Autism Bulletin

Insights for Parents of Disabled Kids from Nobel Laureate Kenzaburo Oe

2011-11-06T21:54:00.004-05:00

Kenzaburo Oe is a Japanese writer made famous in 1994 for winning the Nobel Prize in literature for work that “with poetic force creates an imagined world, where life and myth condense to form a disconcerting picture of the human predicament today.”

He is also known as something else: the father of a son with serious disabilities, including autism.

That he could make such critically-acclaimed, universal art inspired by his life experience—a number of his works, like the novel A Personal Matter, confronts the issue of having a seriously disabled child—interests me. Reading his work, learning about his biography, I want to know: How does he fashion a life of meaning from these circumstances? Where does he find the stamina to carry on as a parent every day and to also delve so deeply into these experiences? Apart from his writings, what is his attitude to parenting, and to life? What can others learn from him?

These are big questions for a blog post and you will find only the beginnings of answers here. But I ask these questions because I see committed parents of kids with autism and other special needs struggling with the demands of their devotion. It takes so much time, effort and resources to set up services. Parents need to monitor the quality of those services, track results, and make adjustments. They have to advocate with government agencies and other service providers to obtain more effective, different or additional services as circumstances change. It takes time to manage behavior plans and individualized education plans. And that’s in addition to going to work, paying the bills, managing a household, caring for others in the family. For many (depending on where they are in the autism journey), these considerations can limit thoughts parents may have about other aspects of life, such as participating in community activities and religious life. Or simply making time to have fun.

And yet, given all this, it is natural for parents to ask themselves, time and again: Can’t we be doing more?

The song of the water rail

I was curious to know more about Kenzaburo Oe and when I learned he was speaking at Tufts University on November 3, I went to see him. What I learned was both basic and inspiring. At 74, Oe is a writer, a political activist, as a husband and a father who remains on high alert for moments of meaning. He described his political activism to close nuclear power plants in Japan after the Fukushima disaster, for example.

When it comes to his disabled son Hikari, the moments of meaning he experiences give him both joy and strength. He draws sustenance from his son, both from Hikari’s achievements and his individuality as he has learned to express it.

Oe recounted how his son (Hikari means “light” in Japanese) did not speak until he was six years old. Hikari’s parents provided tapes of song birds, narrated by a radio actor. A bird would sing, and the actor would identify it. Tweet. “This is a sparrow.” Warble. “This is a nightingale.” And more. Hikari would listen to these tapes for hours. And his parents could tell by watching him that he was listening, but his reactions did not involve intelligible speech.

One summer when Hikari was six, Oe and his family spent time at a country cottage. “I was walking with my son on my shoulder,” he said. “Always, he was silent. Then some bird, a water rail, made a sound.

“My son, he says, ‘This is the water rail’ in the accent of the radio announcer.”

Oe continued: “I couldn’t believe that I heard my son speak.” But it soon became clear that his son could name that bird’s song and others. They continued listening to the bird song tapes for one year, then began listening to classical music. Mozart, Chopin, Bach. “He was charmed by the music,” Oe said of his son. “He abandoned listening to the old [bird song] tapes.”

Then when the radio played in their home, Hikari began to identify the composers. He would say, “It’s Bach,” or “It’s Mozart.” Over time, Hikari began to study piano, but his physical disabilities prevented him from manipulating the keys. His study of music continued, however, and he eventually began to create his own compositions which were recorded on CDs.

Encountering Oe from a distance among hundreds of people in a university auditorium, it was clear that Hikari’s disability played a central role in the family’s life together, and in his work as a writer. (Oe chronicles this story in A Healing Family, a collection of essays about his son’s role in his family which includes his wife and Hikari’s two younger siblings.)

Two aspects of Oe’s humanity emerge:

First, Oe celebrates the moments of joy in the life of his son and his family. It’s not that he pushes aside life’s difficulties. If you read A Personal Matter, you witness doctors advising new parents of a child born with brain damage that their infant should be allowed to die—an experience which echoes the author’s own. When you hear Oe in person, it is clear the pride he takes in his son’s achievements in spite of his challenges.

Second, Oe appreciates the person that his son, now 48 years old, has become. Oe recognizes the times when his son has asserted his own identity. Such a moment occurred when Hikari was still a teenager. Oe said there came a day when Hikari told his mother and father to stop using a childhood nickname, Pooh, and to call him by his real name instead. This moment of personal advocacy must have been a memorable event for Oe to recall it three decades later.

Oe’s his alertness to meaningful moments in his son’s life includes not just the happy achievements. As Oe noted in his Nobel lecture, he found his son’s music also captured deep feelings of sorrow:

“My mentally handicapped son Hikari was awakened by the voices of birds to the music of Bach and Mozart, eventually composing his own works. The little pieces that he first composed were full of fresh splendor and delight. They seemed like dew glittering on grass leaves. … As Hikari went on to compose more works, I could not but hear in his music also ‘the voice of a crying and dark soul’. Mentally handicapped as he was, his strenuous effort furnished his act of composing or his ‘habit of life’ with the growth of compositional techniques and a deepening of his conception. That in turn enabled him to discover in the depth of his heart a mass of dark sorrow which he had hitherto been unable to identify with words.”

All of this is to say that parents of kids with disabilities can learn something from Kenzaburo Oe’s family experience: As we continue on our quest to make the best lives we can for our children, we can take stock along the way. Be open to moments of meaning. Be alive to the glimpses of achievement. And be alert to the people that our children become, their personal expressions of individuality. There can be moments of joy in the act of discovering more about these people we love, even when there is sadness in their hearts. We can find sustenance in their meaningful acts of expression.

“Joy” versus “happiness”

On my drive home after the lecture, I heard more about this concept from the Israeli novelist and writer Amos Oz, who was the subject on a recent segment of the public radio show On Point. The interviewer asked Oz whether he believed different cultures around the world have different conceptions of happiness. Oz asserted that human emotions and experiences are universal to the human condition, and added:

“I don’t believe in everlasting happiness. I believe in joy, in passing joy. In Hebrew, we don’t even have a proper word for ‘happiness.’ The Hebrew word asher, which only translates as happiness, means receiving positive feedback from others. There are six Hebrew words for joy because there are so many kinds of joy, whereas happiness is an abstraction. And everlasting happiness is a nonexistent experience. I believe in passing joys, in coming joys, which come and go and come and disappear. I don’t believe in everlasting happiness, in arriving there and leaning back and enjoying yourself forever.”

Hearing Oz’s answer after Oe’s talk had the effect of witnessing two voices in captivating conversation. For me the experience reframes the questions at the beginning of this post. Should we be doing more for our children? Is it ever enough? Yes and no. But we also need to make room for witnessing moments of meaning. The times when we experience joy with our children should feed us, strengthen us. So that, as we carry on in challenging times, we can be ready for the next moment of joy, however fleeting.

(Photo of Kenzaburo Oe, taken in 2005 by Amao via Wikipedia.)

Useful Article to Explain Autism Diagnosis to Kids

2010-10-18T21:51:00.006-04:00

The Interactive Autism Network has posted a clearly written article designed to help parents discuss an autism spectrum disorder diagnosis with their child. The article, ASD Diagnosis: What Do We Tell the Kids? uses sensitive language and explanations that outline how kids with autism have many different profiles. It has information for siblings, too.

These elements all make the article useful for families who are looking to understand how to communicate with their children—and also makes it potentially valuable as a tool to help explain what is going on in your family to others, from grandparents and extended family members to friends who may have trouble relating to what's going on in your house.

The article explains:

"Each individual with ASD is different. Some are diagnosed at 2 and others at 12. Some are spending their day in a protected special education environment, and others are out in typical elementary, middle, or high school classrooms with some level of assistance, or none at all. Some are intellectually disabled, and some have IQs in the normal or even gifted range.Regardless of intellect, emotional maturity generally lags behind that of typical peers. All of these factors, and more, will influence a parent’s decision about when to inform a child about the ASD diagnosis."

The article encourages parents to "assess what your child already knows and is ready to hear" and to explain the news at the right level, to be positive about a child's capabilities and, overall, to tailor the information to a child's own situation while explaining that autism is "a different kind of disability."

"People have a disability when something isn't working quite right, and they need extra help because of it. For example, a person who is blind may need a seeing-eye dog. People with ASD have a different kind of disability. They can see just fine, but they have trouble with other things. Sometimes they get 'stuck' on a behavior or topic, and they have a hard time understanding how other people think and feel—that's why sometimes it's hard to figure out what people want, or how to make friends. People with ASD need extra help with these things."

This article includes a list of references to research articles and additional resources including other articles from the National Autistic Society in the U.K., from the Autism Society of America, as well as links to resources for families, adults looking at what kinds of information to disclose to employers and others, the well known Sibshops support group for siblings of people with disabilities, and publishers who specialize in books about autism.

This is the kind of article, even if you are not ready to discuss anything, will help you lay the groundwork to study the issue so you can make informed decisions later. Take a look.

A Note About Autism Bulletin on Twitter

2010-07-08T21:06:00.006-04:00

If you are reading news and information online, you undoubtedly have heard something about Twitter, the online information service where users share short messages of 140 characters each. You don't have to post your own messages on Twitter to find it useful, but you do need to sign up for a free account to follow what others say. I recommend it as a good way to keep up to date, because many media outlets, organizations and bloggers -- including this one -- are posting information on the service.

Autism Bulletin's Twitter feed is here: http://twitter.com/autismbulletin. I post links several times a week to items in the news, information about events, information from advocates for people with autism and other disabilities and other information I find useful as a member of a growing global community of citizens who care deeply about people with autism spectrum disorders.

Some recent examples:
* There's a conference, Advancing Futures for Adults with Autism, including a July 15 briefing for members of Congress, happening in Washington D.C.

* Another conference is coming up, August 7 and 8 in Greenwich, Conn., for people who have siblings with disabilities. Find more information at the International Sibling Conference website.

* The Lovaas Institute has posted a partial list of iPhone, iPod Touch and iPad applications designed to engage young children with autism using the principles of Applied Behavior Analysis (ABA).

* The Autism Society of America, in advance of its conference this week, recently recognized six advocates for people with autism and their families. Read more about the 2010 Autism Champions.

If you follow Autism Bulletin on Twitter, the messaging service pushes these information microbulletins out to you automatically. I also have posted a box on the home page of Autism Bulletin which lists these messages, or "tweets" with the latest one on top of the list.

That's the information part of Twitter. What's interesting about what observers and participants in this web publishing world call social media, and what's interesting about Twitter in particular, is that there's a loose sense of community that builds among participants. If you sign up for the service, you can "retweet" or re-broadcast messages you find interesting; you can send messages to others on the service. Or you can observe what happens when you share information.

Notice, for example, the list of more than 2,000 "followers" of Autism Bulletin on Twitter (that's a tiny number compared to the more than 100 million users who have registered worldwide, according to Wikipedia). Even in this small community, you will find:

* Parents
* People who have an autism spectrum disorder diagnosis
* Educators who work with autistic kids, including some who are working to start new schools
* Advocates
* Doctors
* Siblings
* Grandparents

There are people from many countries who speak many languages. Some are veterans of the autism community, while others are newcomers to having this diagnosis in their lives. It's another reminder, among many, that you are not alone.

Health Care Reform and Autism Coverage: Some Holes, Notes Autism Speaks

2010-03-24T20:48:00.006-04:00

Autism Speaks, a major advocacy group, has a helpful post explaining some details of the health care reform bill signed this week by President Obama. In essence, the group praises the direction of the health care policy embodied in the bill and cites some direct benefits for families who are seeking services for people with autism. But the article also notes there are holes in specific coverage options, and cites these holes as reasons to continue to seek reforms.

On the plus side: the new law will end the practice of insurance companies denying benefits based on pre-existing conditions, including autism spectrum disorders. But the law won't mean that insurers must provide behavioral services such as Applied Behavior Analysis. From the article:

Not all insurance plans will be required to cover behavioral health treatment. That’s because only certain types of health plans will be required, beginning in 2014, to cover the list of essential benefits, including behavioral health treatment. The types of plans included under this provision are: (1) plans offered by state-based exchanges, through which individuals and small businesses can purchase coverage; and (2) plans offered in the individual and small group markets outside the exchange. Existing coverage, plans offered in the large group market outside exchanges, and self-insured plans (plans under which an employer assumes direct financial responsibility for the costs of enrollees’ medical claims, or sometimes referred to as “ERISA plans”) will not be required to provide the essential benefits package. This last exception is especially significant because 57% of workers who are currently covered by their employers’ health benefits are enrolled in a plan self-insured by the employer.

See the article by clicking here: Health Care Reform: What does it mean for the Autism community?

The White House has links to information about the health care law and a link that leads you to the text of the law known as H.R. 4872, Health Care and Education Affordability Reconciliation Act of 2010.

A Survey for Parents of Kids with Autism to Help Design Parenting Courses

2010-03-07T20:05:00.008-05:00

At Lesley University in Cambridge, Mass., educators are planning a set of courses specifically designed to help parents of children with autism spectrum disorders. Elizabeth Stringer Keefe, the coordinator of the Severe Disabilities Graduation Special Education Program at Lesley, has posted a survey for parents to fill out online. It's anonymous, takes about 10 minutes to answer 10 questions, and the responses collected about the kinds of services children are receiving, and what concerns parents have, will guide the course designers.

Click on this link to take the survey.

I learned about this survey after writing to Elizabeth to ask about a day-long program on April 10, 2010, at the university, Realizing the Full Potential of Students with Asperger's Syndrome. The program is for special education administrators, teachers, occupational therapists, speech and language pathologists, psychologists, other educators as well as parents. The fee for the event is $65 and proceeds go to benefit the Asperger's Association of New England, an important advocacy and education group based in the Boston area.

The program includes four speakers, including Ellen Korin, a special educator and author of Asperger's Syndrome An Owner's Manual; Stephen Shore, a professor at Adelphi University and author of Beyond the Wall: Personal Experiences with Autism and Asperger's Syndrome, among other works; Karen Levine, a developmental psychologist and instructor at Harvard Medical School who co-founded the Boston Children's Hospital Autism program; and Ross Greene, associate clinical professor of psychiatry at Harvard Medical School and author of The Explosive Child.

This Asperger's program is the third annual speakers event Lesley has organized. Here is what Elizabeth explained to me in an e-mail:

Having been a classroom teacher, a consultant (I still consult to schools in the area of ASD) and now a university professor, I realize more than ever that training for those who work with children with ASD must go beyond standard teacher licensure. This is an area of specialty that cannot be covered to the extent necessary in teacher licensure programs, unfortunately, and requires a specific skill set and understanding. So, calling for specialized training for those working with kids with ASD is one initiative of my program.

In recognition that the cost of training is sometimes an impediment to teachers, parents and other professionals, I made a second initiative of the program the commitment to provide low-cost professional development for anyone working with this population.

And lastly, a third initiative of my program is to support our non-profit community partners, who support families and professionals outside of school settings. In my view this sets a good example for both the teachers that leave my program and for other colleges and universities. So, the last 3 events I have hosted for the series are charity events for a non-profit, with 100% of proceeds going to support the organization (my time is donated as well). This year I also asked Ellen Korin, and Drs. Levine, Greene and Shore to donate their time and they graciously obliged.

One consequence of the rising incident of autism spectrum disorders is an increase in the number of parent education opportunities. Finding the time to attend one of these events can be difficult—but it's essential to check out the opportunities near you, if only to understand what's going on. Especially in challenging seasons as the parent of someone with autism, it helps to see that these events are happening because it demonstrates that you are not alone, that there are people working to provide information, ideas, approaches to help.

One last point about educational events: if it costs money to attend, make sure to check out the source who is providing the information, to see if it is reputable. Or, simply seek out an event that's free of charge to attend (for it's possible you will have to pay for child care, already).

How the Bernard Madoff Ponzi Scheme Affects People with Autism: One Anecdote

2009-03-14T10:01:00.004-04:00

When I was a reporter at a local daily newspaper, our staff spend great energy researching and writing about issues around the world—events like the first Gulf War, say, or budget battles in Washington—and figuring out how to explain those events and how they influenced people's lives where we lived and worked. Finding the right connections took a lot of looking around. It seems like nowadays that one doesn't need to go looking: the events come right to you.

Such is the case with one of Autism Bulletin's readers, a family who is losing a chunk of its respite help for an autistic child because of the infamous Bernard Madoff Ponzi scheme. Madoff, 70, pled guilty in court this week and was sent directly to prison to await sentencing for a scheme in which he bilked thousands of customers of more than $50 billion by promising healthy returns on fictitious investments. The assets that went in were real. But most of it appears gone, as government investigators and lawyers for the clients continue their hunt.

That much you may learned already through the media. The way this affects the family with an autistic child is a simple chain reaction of financial losses, a supply chain of scandal that takes away the respite services. It goes like this:

1.) Madoff's Ponzi scheme bilks investors.
2.) Among the many investors is the Carl and Ruth Shapiro Family Foundation, founded in 1961 as a philanthropic organization, which "supports Arts and Culture, Education, Health and Hospitals, Jewish Causes and Social Welfare programs in Greater Boston and Palm Beach County, Florida."
3.) The Shapiro Foundation announces it will suspend grants for 2009 as a result of its losses in the Madoff scheme.
4.) Among the grant recipients was a community center south of Boston, which provided the respite care. Without the grant money from the Shapiro Foundation, our Autism Bulletin reader reports, the respite program shuts down.

Autism Readings, Resources from Around the Web

2009-02-28T10:08:00.002-05:00

I found these articles, resources and related items of interest for families of kids with autism spectrum disorders. I have found the web application Twitter to be a useful way to share interesting items online (at a higher frequency rate than I recently have been able to post articles on this blog). Below are links to the items, which you can also find at Twitter.com/autismbulletin. Below is a sampling from the past two weeks:

Autism Society of America: copy of E-mail newsletter
Autism Society of America: national conference, St. Charles, Ill., July 22-25
President Obama includes funding for autism in his FY 2010 budget proposal, via Autism Speaks - read more here
Alabama Autism Task Force report, recommendations here.
Agenda for Flutie Foundation for Autism conference April 7 in Norwood, Mass., read here.
Easter Seals campaign: Urge Congress to support families living with autism today: read here.
New from Newsweek: Autism: How Childhood Vaccines Became Villains
Toronto Jewish community holds disability awareness and inclusion events.
U.S. National Institute of Mental Health say stimulus spending to be guided by this strategic plan: read here.
Autism Speaks calls for $200 million for National Institutes of Health autism funding from U.S. stimulus package
RT @UKAF: The London Guardian recently featured the UK Autism Foundation.
Nevada considers autism insurance bill, news item via KRNV.com
Latest edition of Positively Autism newsletter with ABA-related articles.
New Hampshire Walk for Autism has set up website for event Oct. 4, 2009
From Change.org, college programs for autistic students
Wrightslaw newsletter on special ed funding in federal stimulus package
Autism insurance coverage advocates in Kansas continue to press case in state legislature
Autism programs take a hit, Boston Globe article on special ed budgets
Mass. events calendar for families with special needs kids
A journey of love and discovery as sibling of an autistic sister, from Portland Oregonian newspaper

Third Annual ABA Autism Event February 6-8 in Jacksonville

2009-01-27T22:53:00.008-05:00

The Association for Behavior Analysis International (ABAI) is holding its third annual autism conference on Feb. 6-8 in Jacksonville, Florida, with the theme, "Research to Practice: Making Real Changes in the Lives of People with Autism."

Founded in 1974, ABA International is the professional organization for behavior analysts, a group that has seen demand for its members' services rise with the population of diagnosed children with autism spectrum disorders. (See the organization's website, including this page with information for parents.)

Choices about what kinds of approaches to use for helping children with autism spectrum disorders abound, and information about alternative therapies, diets, treatments and medicines circulate around the web and among parent discussion forums. Applied behavior analysis—backed by research and evidence that when trained therapists with expert supervision deliver services, they help people gain important skills—has gained important support among autism experts, educators and the medical community. See more about ABA in the Autism Bulletin archives.

As a parent, I have found it valuable to attend educational events; it's a way to connect with both professionals who are doing research about autism and meet up with other parents. It's a way to know you are not alone. I attended the ABA International conference when it was in Boston several years ago and came away impressed by the experience and knowledge of the presenters.

This year's event will address topics such as adults with autism, ABA school programs for children, Florida's autism legislation and ways to implement successful treatments for autism. Below is a brief overview of the components of the conference.

This year's conference, "Research to Practice: Making Real Changes in the Lives of People with Autism," will host 15 distinguished ABA experts presenting resources and information that teachers, therapists and parents can use to improve the lives of those living with an autism diagnosis. Presentations will focus on a variety of topics relating to three common themes important to the future of ASD treatment methods:

· Treatment Developments - A summary of the latest progress in behavioral intervention methods and how applied behavior analysts are helping to integrate people those with ASD into the community.

· Success Stories - Using science to guide autism treatment taking a look at the most recent and reliable case studies to help determine the future of those living with ASD.

· In Their Own Words - Personal observations and recommendations from professionals and parent advocates who are most closely affected by ASD.

See below for a rundown of speakers, provided by ABA International:

ABA Autism Speakers Summary

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Massachusetts Considers Autism Insurance Bill

2009-01-26T20:48:00.004-05:00

The Massachusetts Legislature is taking up a bill that would require private healthcare policies cover autism services such as Applied Behavior Analysis, physical and occupational therapy, diagnostic and other services. You can see a copy of House Bill 67 below. Rep. Barbara A. L'Italien, a Democrat from Andover, and Senator Frederick Berry, a Democrat from Peabody, introduced the bill earlier this month.

Advocates from AutismVotes.org, an initiative of the advocacy group Autism Speaks, have set up a website for this Massachusetts initiative. It's one of several efforts around the country to raise awareness of the issue of autism insurance, and to press for increased coverage.

The autism insurance issue has been a key legislative effort for autism advocates for quite some time. As awareness about the prevalence of autism spectrum disorders has increased, so have calls for ways to help families who are thrust into finding ways to help their children, with early intervention services and special education programs. (Calls to help young adults and adults have not been as loud, but one can anticipate they will grow as the cohort grows and matures.)

In state after state (see Autism Bulletin archives for articles on South Carolina, Texas, Pennsylvania and other states), the battle shapes up to be one where families and advocates point out the need for services and the health insurance industry argues the cost is too high. Massachusetts is among those states where we can expect to see that conflict play out this year.

Below are two documents (e-mail readers will see links, and blog visitors should see an image of the documents embedded in this article). The first document is a copy of House Bill 67, which calls for insurance coverage for autism services. The second document is an Autism Speaks advocacy paper, prepared in 2007, outlining the reasons for supporting this type of legislation.

MA HouseBill 0067_001 - As Introduced Jan 2009

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Below, find the Autism Speaks document that lays out an argument in favor of autism insurance coverage.

Arguments for Private Insurance Coverage

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Autism Insurance Legislation Updates

2009-01-20T21:21:00.005-05:00

There's been a lot of activity around the country on the autism services and insurance legislation front. The chart and map below is an uploaded copy of a PDF assembled by Autism Speaks, a leading autism advocacy organization. It shows the status of insurance legislation as of December 17, 2008.

If you are receiving this by e-mail, you can find the chart by clicking here. Green states—Arizona, Florida, Illinois, Indiana, Louisiana, Pennsylvania, South Carolina and Texas—have passed laws that "require private insurance companies to cover autism services, including Applied Behavior Analysis (ABA)."

Red states—Michigan, New Jersey and Virginia—are considering bills endorsed by Autism Speaks that reform autism insurance coverage.

The map also shows other states—most, that is—which are in some fashion starting to work on an autism insurance bill.

There have been some updates since Autism Speaks published this chart. These include:

•Washington State, where advocates today issued a press release on pending legislation. From the release:

Washington lawmakers are getting ready to consider two companions bills, HB1210 sponsored by State Representative Brendan Williams (D-22) and SB 5203 sponsored by State Senator Steve Hobbs (D-44), that will require health insurance plans to cover diagnosis and treatment for autism spectrum disorders, including services like Applied Behavior Analysis, for individuals up to age 21.

The bills, referred to as "Shayan’s Law," follow the recommendations of the Caring for Washington Individuals with Autism Task Force in their Executive report to the Governor (December 2007). The report lists health insurance coverage of autism-related treatments within Washington State as its number one priority recommendation.

The grassroots organization, “Washington Autism Advocacy”, made up of parent volunteers, has up to the minute information about the bills on its website www.washingtonautismadvocacy.org.
Both bills were introduced in the legislature the second week of January. Once passed, they will require private insurance companies to pay for diagnosis and evidence-based treatment of Autism Spectrum Disorders, including Applied Behavior Analysis. In addition, they will remove unreasonable visit caps that have left thousands of families facing autism uninsured or under insured. Autism is a neurological condition that affects 1 out of 150 children.

51 State Representatives and 29 State Senators, who recognize the debilitating impact the autism epidemic is having on children, families and schools, have signed on as cosponsors of Shayan’s Law.

•Wisconsin, where autism advocates report: "Wisconsin's new Legislative session has begun and in it is this introduction of a Bill for Autism Insurance dated January 8th, 2009. It has been read for the first time and was referred to the committee on Health, Health Insurance, Privacy, Property Tax Relief, and Revenue on the same date." According to an analysis by the Wisconsin Legislative Reference Bureau:

This bill requires health insurance policies and self−insured governmental and school district health plans to cover the cost of treatment for an insured for autism, Asperger’s syndrome, and pervasive developmental disorder not otherwise specified if the treatment is provided by a psychiatrist, a psychologist, a social worker who is certified or licensed to practice psychotherapy, a paraprofessional working under the supervision of any of those three types of providers, or a professional working under the supervision of an outpatient mental health clinic. The coverage requirement applies to both individual and group health insurance policies and plans, including defined network plans and cooperative sickness care associations; to health care
plans offered by the state to its employees, including a self−insured plan; and to self−insured health plans of counties, cities, towns, villages, and school districts. The requirement specifically does not apply to limited−scope benefit plans, medicare replacement or supplement policies, long−term care policies, or policies covering only certain specified diseases. The coverage may be subject to any limitations or exclusions or cost−sharing provisions that apply generally under the policy or plan.

• Kansas, where advocates report:

Kate's Law was filed with the Kansas Legislature on January 12, 2009 and assigned Senate Bill Number 12 (SB 12).

It has been referred to the Senate Financial Institutions and Insurance Committee (Senator Ruth Teichman, District 33, chair). Kate's Law must pass out of the Senate FI&I Committee before it can be considered by the body of the Senate. If it passes the Senate, then the process starts all over again on the House side.

Our first goal is to get an early hearing on the bill. To see how you can help, please check the KCAL website and your email regularly.

See the map below. (Thanks to the Washington-based autism advocates for sharing it). If you have updates or news to share about this issue, please don't hesitate to e-mail me or post a comment at the end of this blog post.

As 2009 State Initiatives12.17

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Autism Bulletin Twitter Feed

2009-01-17T09:56:00.002-05:00

I have created an Autism Bulletin Twitter feed to share more information with people interested in news and information about autism spectrum disorders.

Twitter is a service that allows users to post short messages (up to 140 characters long) on the web. It is an easy way to share news and information and website links with interested people. I receive a lot of information—more than I can post in the short essays here—and I hope this will be a means of sharing more information with you.

I have created a box on Autism Bulletin, at the top right, for you to see the latest Twitter posts, also known as "tweets." If you already have a Twitter account, you can receive these posts in your personal Twitter feed by following http://twitter.com/autismbulletin.

Please let me know if you find this useful. And as always, keep the suggestions and articles coming. If you do share articles with me, it's very helpful if they come with a website link as well as text. Thank you for reading Autism Bulletin.

U.S. Version of "The Transporters" Video Series Designed for Autistic Children Arrives

2009-01-12T00:01:00.007-05:00

The British autism researchers who recently made The Transporters, a series of animated videos to help young children aged 2 to 8 learn to recognize emotions and facial expressions, is unveiling a version of their DVD for the U.S. market.

The DVD, which has a series of 15, five-minute episodes and contains quizzes for viewers to review facial expressions from each episode, costs $57.50 with a portion of the proceeds going to autism research groups and charities including Autism Speaks. The DVDs are available starting January 12, 2009 at The Transporters.com.

There are quite a number of autism-related products aimed at families who are, of course, desperately interested in finding ways to help their kids make gains in communication skills, among other things. You won't find many product references or endorsements on Autism Bulletin because I don't want to recommend you spend precious dollars on anything.

The Transporters is interesting because when it first came out, about a year ago, it was a project supported by the British government, working with the Autism Research Centre at the University of Cambridge's medical school. The UK government supported the development of this video series and made it available to thousands of families at no cost.

I've asked the public relations company for The Transporters if they know of any plans to distribute this DVD to public libraries or other places where parents who can't afford the price may borrow the video.

The other reason this project is interesting is because the champion of The Transporters is well-known autism researcher Simon Baron-Cohen. In developing this project, researchers are leaning on the popularity of cars and trains among young autistic children (does your little one like Thomas the Tank Engine?) while embedding within the front of vehicles people's real faces and expressions. The episodes cover emotions like happy and sad, excited and angry, as well as more nuanced feelings like sorry, proud, surprised, unfriendly, tired, grumpy and worried. The researchers assume that there will be repetition involved in playing the short videos, to reinforce the impressions and messages.

In a press release accompanying the release of the U.S. version of the DVD, Baron-Cohen states:

"Imagine you're the parent of a child with autism and your child doesn't look up at your face, doesn't respond when you call their name, doesn't interact in the normal way. It can be really heartbreaking. The Transporters addresses this challenge by helping children with autism look at faces and recognize feelings. We've found a way to reach children with autism by bringing the social world to them rather than expecting them to come to us."

There are examples of the British version of The Transporters available on YouTube. You can see an example of The Transporters in this YouTube video clip, about five minutes long:

Also see this four-minute video with researcher Simon Baron-Cohen, and a clip showing a child answering questions from the quiz on the video.

Also see from Autism Bulletin archives:

Videos from British Autism Researchers Teach Children to Recognize Emotions

Support Group for Siblings of Disabled Now on Facebook

2009-01-06T21:31:00.004-05:00

The Sibling Support Project, a Seattle-based non-profit group that works to help siblings of people with disabilities, has started an online group on Facebook, the huge social networking website. You need to join Facebook's free service to become a part of the group. Learn more about that by visiting the SibNet on Facebook page.

This is clearly more of a benefit to the adult siblings of people with disabilities. It's a valuable reminder for families of children with autism spectrum disorders that the needs of siblings continue on as kids grow up.

If you pay attention, there's a stream of media coverage that gets at the issue. National Public Radio broadcast a piece on January 1 about Marissa and her younger brother Andrew Skillings, who is 11 and has Asperger's, a form of autism. You can read, see photos and hear about their relationship by clicking on "Coping with an Autistic Brother" at npr.org. Here's a quote from Marissa:

"Sometimes, if I get really frustrated, I just wish I could change everything: Sell him to the zoo and buy new parents," Marissa says. "But then the times when I'm actually appreciating things and I'm not in the moment when I'm steaming mad, I do appreciate what I have."
"I don't think I'd change anything, 'cause this is my life and this is what I'm used to. Andrew wouldn't be like the Andrew I know and love if he was different, because autism is his whole personality."

You can find more articles related to siblings on Autism Bulletin.

Autism Advocates Scheduled to Meet with Obama Transition Team

2008-12-17T21:50:00.003-05:00

A small group of autism advocates are scheduled next week to discuss disability and health care policy with President-elect Barack Obama's transition team, according to one of the advocates invited to the event.

Ari Ne'eman, president of the non-profit organization Autistic Self Advocacy Network (ASAN), has communicated with other advocates for people with autism that he was invited to speak with members of Obama's team, and said he seeks input from others in the community. In an e-mail message distributed by The Autism Acceptance Project, Ne'eman, wrote:

Early next week, the Autistic Self-Advocacy Network (ASAN) has been invited to give input to the Office of the President-elect at two meetings relating to disability policy in the upcoming administration. The first meeting will focus on autism policy issues specifically while the second will focus on health care policy from the disability perspective. The meetings will be small, intimate and include representatives from several other autism and/or disability organizations as well.

I'd like to take this opportunity to invite people to give their thoughts as to what issues matter to them in relation to Autism Policy and Health Care Policy in the upcoming administration. We've been asked to take 2-3 policy priorities into the first meeting and will want to represent some of the specific needs of autistic self-advocates in the second. As an organization that seeks to represent the needs of the community of autistic people and to fight for the rights of ourselves, our families and our supporters, we want to hear from you.

The Autistic Self Advocacy Network is based in Washington, D.C., and was founded by Ne'eman, who explains in his website biography that he's a student at the University of Maryland-Baltimore County. Ne'eman, who has been diagnosed with Asperger's, runs this group along with others with autism spectrum disorders. The group's website notes: "ASAN's public policy initiatives involve advocating for greater support and understanding for adults and children on the autism spectrum."

What priorities would you advocate? Here's the contact information for Ari Ne'eman via e-mail: aneeman@autisticadvocacy.org.

Also see:

Autism Society Urges Families to Voice Concerns to Obama's Transition Team

Autism Society Urges Families to Voice Concerns to Obama's Transition Team

2008-12-11T20:42:00.004-05:00

The Autism Society of America, a leading advocacy group for parents and families, is urging its members to post comments citing the need for autism support services and full funding for the Individuals with Disabilities Education Act on President-Elect Barack Obama's transition team website, Change.gov.

The Obama team has continued its use of web-based technologies honed during the election campaign, both to inform and engage voters and raise record amounts of money. During the transition between presidencies, Obama has used Change.gov to speak directly to voters through video and other means—and engage citizens on ideas that are important to them. (Here's a New York Times article discussing this feature.) With the floor open for discussion on a range of issues, the Autism Society says now is the time to join the online meeting to discuss healthcare policy, which is titled, Health Care — Of the People, By the People.

The Autism Society has posted a web page with suggestions for submitting comments. The substance of the Society's suggestions are below:

Start off with a brief explanation why you are concerned and want things to change.

I am the parent of a child with autism and I want my child to have happy and productive life just as any parent would want for their child.

Provide some facts such as:

Prevalence

1 in 150 U.S. children is diagnosed with autism. Boys are four times more likely than girls to have autism.
1.5 million Americans have an autism spectrum disorder

Diagnosis

Less than a decade ago, the disease was diagnosed at age 3 or 4. Now it is routinely diagnosed at 2.
Symptoms range from mild to severe. Many people with autism display rigid routines and repetitive behaviors.

Cost

Lifetime cost of caring for a child with autism: $3.5 million to $5 million
Annual U.S. cost: $90 billion

The explosion of autism spectrum disorders (ASD) and related disorders in the United States constitutes the largest health care crisis in our nation’s history. It has been estimated that 1 in 150 children will be diagnosed with ASD, with recent data suggesting that as many as 1 in 67 boys are now affected.

Autism is the fastest growing disability in the country, now affecting an estimated 1.5 million individuals - more prevalent among our children than pediatric cancer, diabetes, and AIDS combined. There are approximately 24,000 new cases of autism diagnosed each year. Every 20 minutes another child is diagnosed with autism in the United States.

The alarming increase in autism spectrum disorders must be considered a national health emergency that requires the allocation of significant resources, aggressive research toward effective treatments for those affected, and rigorous investigation into causation for the protection of future generations. Equally important is to ensure that individuals affected by autism receive help TODAY.

Offer solutions, such as:

Legislative Agenda

Please support Expanding the Promise to Individuals with Autism Act. This bill would provide adults the services they need to lead a productive and meaningful life. The Autism Society of America works to ensure that adults living with autism have access to appropriate employment, housing, and services. ASA chapters have been instrumental in developing job training programs and creating independent living or residential services opportunities for adults with autism. This act will allow these programs to grow and serve more adults nationwide.

Please support Full Funding of the Individuals with Disabilities Education Act. Federal funding is $10.5 billion short of full funding this year leaving thousands of children without services.

Autism is the most costly disability confronting our public education system. The federal government should provide local education agencies the resources they need to serve children with autism.

The Autism Society of America is experiencing an explosion of information and referral requests from teachers. Teachers are clamoring for additional training - and ASA has met their demands by hosting a training conference for teachers - but much more needs to be done.

Kansas Advocates Say State to Consider Autism Insurance Bill

2008-12-09T21:06:00.008-05:00

Kansas lawmakers are getting ready to consider a bill that would require health insurance plans to cover diagnosis and treatment for autism spectrum disorders, including services like applied behavior analysis to cover citizens of the state until age 21. The proposal also calls for an exclusion for small businesses who would not have to offer such services through their health plans.

The proposal, referred to as "Kate's Law," follows the establishment of the Kansas Autism Task Force, a panel of citizens set up by the state in 2007 to look into the needs of people with autism.

The Kansas Coalition for Autism Legislation has lots of information about the proposal on its website and its special Kate's Law web page.

The bill itself has not been introduced officially in the legislature, but the outlines of it are slated to include the following, according to the Kansas Coalition for Autism Legislation:

• Health insurance policies must provide coverage for the diagnosis and treatment of autism spectrum disorders
• “Treatment” includes any therapy prescribed by the attending physician and includes applied behavior analysis, speech therapy and occupational therapy
• Coverage for applied behavior analysis shall be subject to a maximum benefit of $75,000 per year through age 21
• Small businesses, i.e. employers with 50 or fewer employees, may “opt out” of these provisions
• Health insurance companies cannot deny coverage on an individual solely because the individual is diagnosed with an autism spectrum disorder

The Kansas advocates for this bill, who are gearing up for a public education and awareness campaign, have posted a couple of YouTube videos explaining the medical, social and financial implications for a family that received an autism diagnosis. The first video is below, or if you reading this via e-mail subscription, you can find the 7-minute clip here.

Watching Obama's Stimulus Package and How States Receive Federal Aid

2008-12-03T21:38:00.010-05:00

President-elect Barack Obama committed himself to helping state governments deal with economic problems and budget shortfalls in a meeting in Philadelphia on Dec. 2. Assuming the new Obama administration can win support after taking office in January and start implementing its plans, this is good news for many who care about services delivered at the state level.

While this issue clearly goes beyond services for people with autism spectrum disorders, it will be important for advocates to watch how state-level budget discussions progress. Most state governments—41 out of 50 as of this week, The New York Times reported— are forecasting budget deficits this year.

In Massachusetts, Gov. Deval Patrick told WBUR radio in Boston that Obama and governors shared a strong consensus that a new stimulus package will focus on "job creation, to build roads and bridges, restore rail systems, install green technology, refurbish public buildings." Patrick added that governors told Obama states need help with rising demand for services like Medicaid, food stamps and unemployment benefits, which are rising as state revenues fall.

Update: WBUR posted the audio clip of the interview with Deval Patrick at my request. Here it is:

Those points are clear: new federal money for roads, bridges, buildings, new environmentally-friendly fixtures and technologies. Help for people hurt by the recession.

What's not clear so far is how operating budgets are faring at the state level, and at the level of cities and towns, where our kids go to school, for example, or other important services get delivered. Those are the decision-making processes that bear close scrutiny, and likely, some advocacy.

If you have information about goings-on in your state, please feel encouraged to post a comment below this post.

Below is a video of Obama's remarks at the governor's conference on Dec. 2 in Philadelphia, via Yahoo video.

President-elect Obama and governors tackle the economy @ Yahoo! Video

The Grandparent Autism Network of Orange County, California

2008-11-15T10:17:00.005-05:00

One thing I have learned from experience and from networking with other parents of kids with autism spectrum disorders is that grandparents have the potential to be difference makers. Grandparents can serve as a sounding board for the myriad decisions we have to make about our children. They can provide both all kinds of support—emotional, respite, you name it (assuming they are in a position to help).

That's why it's so encouraging to report on the growth of the Grandparent Autism Network of Orange County, based in Tustin, California. Bonnie Gillman, founder and president of the Grandparent Autism Network, said she believes the group is the only nonprofit support group set up exclusively for grandparents in the United States. Its members include more than 500 grandparents in 34 cities in Orange County in southern California, and its website, www.ganinfo.org, has people all over the world seeking information from it.

Here is a list of pilot projects, which Gillman notes welcomes the participation of all adults, whether they are grandparents or not, and which her California group hopes can be replicated by others in other locations:

• The Special Needs Acceptance Book Project will increase awareness and peer support for children with special needs to prevent bullying. This book and accompanying Teachers' Guides for K-6 grade classrooms and Christian and Jewish settings will be introduced to elementary schools, youth groups, churches, synagogues and libraries in the 34 cities of Orange County. Interactive educational and character building activities help children to understand more than 20 different developmental disabilities. The project teaches that everyone is special and everyone deserves to be understood and accepted.

• A Job Opportunities Committee will assist job vendors contracted by the Regional Center of Orange County to identify prospective employers for people with special needs. There are several ways volunteers can help to develop a broad range of new work opportunities. The Orange County group plans to share information about this initiative at a statewide meeting in February 2009.

• Two informational videos designed to broaden awareness: "The Impact of Autism on Intergenerational Relationships" and "Autism Research: Fact and Fiction."

We have seen a growth in awareness in the United States in the past few years about the need for autism awareness and support of people with autism spectrum disorders. The establishment of an organization like the Grandparent Autism Network is a reminder to parents who may feel they are stuck in the midst of IEP negotiations, or coping with daily living challenges and trying to help their children, that we are not alone.

More Autism Resources for the Presidential Election for Voters

2008-10-23T20:19:00.004-04:00

The Autism Society of America today publicized a presidential election resources page, with statements by Republican John McCain and Democrat Barack Obama. Find the page here, with the candidates' full statements:

Statements on autism by the presidential candidates.

Excerpts below.

From McCain's statement:

As you know, autism is a "spectrum disorder" that affects individuals differently and to varying degrees. Because of this, there is no single approach to resolving the many challenges of individuals with autism and their families. That is why I have supported a range of activities to improve the diagnosis, treatment, education, and lifespan needs of individuals with autism.

The first issue is to ensure that children with autism are diagnosed early -- when the condition is most treatable. All research indicates that children who receive comprehensive therapies can have dramatically improved outcomes. Federal efforts must support research to improve early diagnosis, intervention and treatment. I cosponsored and worked to enact the Combating Autism Act of 2006, which is helping to increase public awareness and screening of autism spectrum disorder, promotes the use of evidence-based interventions and created autism Centers of Excellence for Autism Spectrum Disorder Research and Epidemiology. ...

We must also strengthen our educational system, so that our schools can meet the needs of children with autism. Well-trained special education teachers are essential to the health of the public school system and speak volumes to our ability to ensure basic civil rights. I have often stated that our nation’s children deserve an equal opportunity to succeed. This opportunity should not stop short of children with autism, or any other developmental disability.

From Obama's statement:

As diagnostic criteria broaden and awareness increases, more cases of ASD have been recognized across the country. I believe that we can do more to help Americans with ASD and their families understand and live with these conditions. That's why I am committed to increasing federal funding for autism research and treatment to $1 billion annually by the end of my first term in office. I also believe that we should increase funding for the Individuals with Disabilities Education Act to truly ensure that no child is left behind.

I also support the adoption of a comprehensive plan designed to provide lifelong supports and resources to Americans with ASD and other disabilities. This plan would ensure that their needs are met by:
• Reclaiming America's global leadership on disability issues by becoming a signatory to -- and having the Senate ratify -- the UN Convention on the Rights of Persons with Disabilities;
• Providing Americans with disabilities with the educational opportunities they need to succeed.
• Ending discrimination and promoting equal opportunity
• Increasing the employment rate of workers with disabilities, and
• Supporting independent, community-based living for Americans with disabilities.

More importantly, as you have all gathered here today to discuss, access to health care is a pressing need – one that we can no longer afford to ignore. As President, I will make high quality, portable health care plans affordable to all Americans, including the self-employed and small businesses.

Links to the candidates' websites:

Obama's homepage, and the campaign's disabilities page and a statement about autism.

The McCain campaign's website includes lots of information about the candidate's policy issues, including healthcare and education and this statement about autism.

Why This Parent of a Special Needs Child Is Voting for Barack Obama

2008-10-22T21:58:00.013-04:00

There have been a number of essays and editorials about the presidential race, considering in depth the positions of Republican John McCain and Democrat Barack Obama, which I would recommend: The New Yorker and The Los Angeles Times are two that endorse Obama which clearly lay out the case—in general, for a change in direction for the United States, and specifically for Obama's leadership.

I cite those examples for two reasons: First, I don't decide whom to support based on one issue, whether it be autism or something else. And second, this blog post is going to hit just a few highlights. Still, when it comes to this blog's readers—mostly parents and family members of people with autism spectrum disorders—there are several reasons to add Autism Bulletin's voice to those supporting Barack Obama for president, and Joseph Biden for vice president:

1.) The Role of Government in Our Lives

No one I have met in this journey as a parent of a special needs child plans to use government services more than anyone else. We became parents, and then we learned that we had a special needs child. It happened, and most of us have learned that no matter how hard we try, we need help. It's not our fault we need help, but we do.

The government can help, in many ways: through the work of educators teaching our children new skills, in early intervention programs, in school settings and at home; through supporting healthcare programs that augment those school- and home-based services; for autistic adults who require support to live in our communities.

We're in tough economic times, certainly, and it is difficult to imagine a great expansion of social services in the coming years. But listening to Obama and McCain during the campaign, the conventions and the debates, it is clear to me that a Democratic administration would be better for our kids and our families.

I say this having heard the pledge by Sarah Palin, the Republican vice presidential nominee, to be an advocate for special needs children in the White House. But I have trouble reconciling that pledge with a historic position by the Republican Party to want to eradicate the Department of Education. I have trouble seeing how a Republican administration would support government research dollars going to help people with autism, when John McCain promises to cut spending across the board. (I also recall stories like that of Mike Bernoski, a parent who was thrown out of Republican Joe Barton's Congressional office when Bernoski sought to discuss the Combating Autism Act.)

And, more importantly, it's clear that Obama has both education and social services at or near the top of his agenda. When he has to make tough choices, he has indicated that he will prioritize education and healthcare goals. He is a better choice.

2.) The Healthcare System in America

Advocates for people with autism spectrum disorders have done heroic work in recent years around the country, state by state, to win more health insurance coverage for our families. There's more work to be done.

John McCain's healthcare proposal seeks to apply free market principles to the nation's healthcare system. It would allow people to shop for health insurance across state lines, which leaves in doubt state governments' requirements to cover citizens according to state laws. At the least, it would appear to undercut the role of states and appears to threaten the gains the advocates for our families have won.

In a market-based model, there are always winners and losers. The question then comes up: what role will the government play when people all over the nation, including people with disabilities, are losing?

During the debates, a moderator asked the candidates whether healthcare in their view was a right or a responsibility. McCain said he sees healthcare as a responsibility. Obama said he sees healthcare as a right for all Americans.

I have read and heard media reports which suggest Obama's healthcare plan projections are rosy, that they won't work exactly as he says by expanding the existing employer-based system, and that the economic meltdown will throw his plans off track. Those points make sense. But I come back to the principle: Obama is right that our government needs to find ways to care for everyone. McCain is wrong to trust the market to solve the problem.

3.) The Role of the Courts

Parents of disabled children have brought cases to the federal courts, seeking for example, the right to advocate for an autistic child when they can't afford a lawyer. We should expect more cases, as questions about what our society should do to treat people with disabilities, to allow them to live, learn and work in our communities and nation as full participants.

The president's right to appoint judges, to the Supreme Court, and to other federal benches, is another reason I am supporting Obama. I trust him to appoint judges who will be open to the fact that in today's America, we face issues, challenges, medical conditions and disabilities that require careful consideration and fair treatment.

4.) Awareness Is Not Enough

I have been astonished by the degree to which politicians have mentioned autism during this campaign. John McCain, Barack Obama, Bill Clinton, Hillary Clinton—each has spoken about it, citing the need to support families dealing with its challenges. It feels like autism advocates have won an important awareness battle.

But awareness is not enough. It's not enough to say you know about the problem. You have to be willing to do something about it. Obama's domestic priorities of education and healthcare come closest to addressing the issues that parents of kids with disabilities face.

No one, especially in these uncertain economic times, can predict what is going to happen. But after listening to these candidates, studying their histories, watching how they conduct their campaigns, noting their choices of vice presidential nominees, advisers and prominent supporters, I have concluded that Barack Obama is the best choice for president: for our country, for our families, for our future.

Rooting for Melanie Roach, Olympic Weightlifter, Autism Advocate, Mom

2008-08-06T20:43:00.005-04:00

If you see Melanie Roach in one of those made-for-TV profiles of Olympic athletes in the next couple of weeks, believe her when she says that it's a world-class victory for her to have made it to Beijing at all.

Roach, 33, is on the United States women's weightlifting team that is due to compete when the summer Olympic games start this week with the finals scheduled to be held on Friday, August 8. As reported in The New York Times and NPR, Roach has battled for the past three years—after having three kids, including one with autism spectrum disorder—to return from back surgery to train, compete and finally, make the Olympic team.

Roach told NPR that having a son with autism has taught her to focus on the moment, and the things that are possible, rather than the long term and what is not possible. From the story:

Roach's Olympic quest has been both complicated and enriched by her son Drew, who is autistic. Not long after Drew was diagnosed three years ago, Roach went into a near depression.
A devout Mormon, she prayed her son would get better. When he didn't, she went to her bishop in tears. He told her to stop focusing on what Drew couldn't do.
It was, she says, a turning point. She began to truly embrace who Drew was — living in the moment with him and not dwelling on the past or the future.
"I really feel like that concept of enjoying the now and not worrying about the future is what my coach has been trying to teach me for 14 years — and that is what has made me such a different athlete 10 years later, and that is what has made me strong enough mentally to make this Olympic team."

If you have about seven minutes, check out this video The New York Times did earlier this year profiling Roach, visiting with her and her family and watching her train. She is matter of fact about her 5-year-old son Drew having autism (and her husband Dan being a state representative in Washington, and owning a gymnastics business). She says Drew is challenging, and you can see some of that in the video.

Roach voices what many parents of kids with autism spectrum disorder feel:

"It's difficult to let go of the expectations you have for your child. You have to kind of come to the realization that the things you thought he might become, or the experiences you think are normal for your children, sometimes don't happen for a child with autism," she says, adding that for her, "It was about letting go, and finally embracing who he was and to not think too much about the future and just enjoy who he is now."

"People look at me funny when I say that weightlifting is the easiest part of my day, but it's true."

She also adds: "I would trade every minute in international competition for a cure for autism."

(Photo from melanieroach.com.)

Great Teachers of Kids with Autism Deserve More Than Gratitude

2008-07-08T21:04:00.010-04:00

How do you say goodbye and thank you to a teacher who has made an important, positive, lasting impact on your child's life? On the lives of your whole family?

This is an important issue for families who have children with autism spectrum disorders because special education services are an essential component of enabling a person with autism to learn and develop skills—in the classroom, at home, and in the community—that will form the building blocks of a better life.

And parents I've met rightly focus on not just the person doing the teaching—let's stipulate you have to be a kind, patient person to want to be a teacher of kids with special needs—but also on the person's qualifications, training and experience. (Good supervision also makes for superior teachers, but that's a topic for another post.)

The point here is: When you find a great teacher, you know it. You not only experience your child learning new things, you get to see data that tracks such learning. You not only see a child who enjoys seeing the teacher, but you as a parent get to learn new things about how to support and enhance your child's development. You get to ask questions, make suggestions. If you read someplace that it takes a village to raise a child, it can feel like it takes a town to raise a child with autism; and the teacher is a leading citizen in that town. A great teacher is a gift, something you can't quantify in terms of value. You know you have a great teacher because you dread having to say goodbye.

So how do you say thanks, how do you show your gratitude to someone whose work has been a gift? Here are some thoughts below. You are encouraged to add your own.

1. Don't wait until the end of the school year (or teaching cycle) to say thank you.
Offer positive reinforcement early and often. Learn what kind of praise resonates most with a teacher. It could be a written note, a donation to charity in her honor, a letter of commendation to her school, her supervisor.

2. Be a good partner.
Because teaching kids with autism requires a commitment by parents to complement what is going on at school, listen to the teacher's good advice, work with her on behavior plans to develop them and carry them out. Demonstrate you are not only an expert on your child's needs, what motivates her to do well, but that you also are a good listener, interested to learn more from skilled educators.

3. Look for ways to support educational institutions for kids with autism, which are training more great teachers.
If your great teacher is affiliated with an educational institution or school district, there could be a way to volunteer to help them, or become a contributor.

4. Ask other parents for their thoughts.
Other parents you meet along the way to figuring out how to make a difference for your child with autism can help you answer many questions. How do they show their appreciation for great teachers?

Also see:

Autism Specialist Market Heating Up; How Do You Thank Your Autistic Child's Teachers?

Autism Legislation Advocates to Meet in September

2008-06-30T21:22:00.009-04:00

A group of autism advocates from around the nation are planning their third annual meeting in September in Kansas City to discuss strategies for influencing public policy and state laws to help people with autism. The meeting dates are September 26 and 27, and the location is to be announced.

The group includes parents and other advocates working on such issues as health insurance coverage for autism services. Those attending this meeting in past years have led successful efforts in South Carolina and Texas to pass state laws requiring health insurers to cover autism-related services for children.

Lorri Unumb, a law school professor and advocate from South Carolina who organized the first two advocacy meetings and was a leader in the legislation effort in her state last year, said in an e-mail to fellow advocates: "I started organizing these “summits” a couple of years ago as a forum for parents and professionals who are interested in autism legislation and policy to get together and share ideas." The agenda, she said, includes sharing information, strategies and arguments to help broaden coverage for people with autism.

The meeting would be valuable for advocates and parents who are working in their states to pass such legislation and raise awareness. For more information about the event, send an e-mail to Lorri Unumb at lunumb AT sc DOT rr DOT com.

Also see:

• Autism Legislation Meeting Planned (2007)

Reprise: Why Families with Autism Need to Celebrate Mothers Often

2008-05-11T08:00:00.002-04:00

Last year for Mother's Day, I posted this piece on Autism Bulletin: Why Families with an Autistic Child Need to Celebrate Mother's Day Frequently; Plus Some Suggestions. Click on the link to read the piece.

In short, parents, and especially moms, work long and hard to help their kids. It's important to take time off, away from this demanding life, so you can rest, recharge and get back to it. Respite helps you help your children.

Some respondents to this piece explained, understandably, that getting time away from the family can be difficult to arrange. An unscientific survey on this blog showed that most parents took no time off at all.

When was the last time you took a break, for at least an hour? And what did you do? Walks count. So do coffee shop meetings.

Please feel encouraged to share your thoughts.

Caring for Siblings of People with Autism

2008-05-10T10:27:00.004-04:00

A young man wrote to Autism Bulletin recently to express his frustration about his adult sister's life. The details I will keep private, but the gist is that he feels that his sister, though employed, is capable of much more than the duties of her entry-level job. In addition, he is frustrated that she continues to demonstrate a narrow set of interests in her life.

A few things struck me about this note, and I want to share them with you and then ask for your comments and advice for siblings.

1.) Parents need to pay attention to the emotions and needs of siblings of our kids who have an autism spectrum disorder.

Of course we don't forget about our typically developing, or developed, children as we spend so much energy on our children with autism. It's a good idea, though, to add to our long to-do list: look for ways to meet siblings' emotional needs.

There are support groups for siblings available in many areas. Sometimes those groups are designed specifically for siblings of people with autism spectrum disorders, and sometimes they are for siblings of people with various disabilities.

You may find it useful to do other things, like special outings, activities geared specifically to the sibling's interests and passions. The key is to set aside time for this.

2.) The sibling's needs don't stop after childhood.

As this young man noted, he is thinking a lot about his adult sister. He consults with his parents, but he has his own ideas, wishes for his sister and frustrations.

3.) There is something good going on here.

This young man was very frustrated and took the time to write to me about it. When I wrote back to this young man, I started off by telling him that his sister is a very lucky person to have a brother who cares so much about her.

That good fortune is a blessing, really, for all of us. It shows that people who grow up in a home where the family is a group of caring people can make a difference. I know that my outlook on life, on the world, on people has changed since my family began learning about autism. I can only hope that we find more people with the capacity for compassion and understanding as we continue along. In that sense, this young man's e-mail to me made my week.

Also see:

Ideas for Finding a Sibling Support Group

More Info: Support Groups for Siblings of Kids with Autism

More on siblings on Autism Bulletin

How to Find Autism Health Insurance Information

2008-05-03T20:32:00.000-04:00

In the United States, insurance coverage for autism services such as Applied Behavior Analysis (ABA), speech therapy and other services, varies by state. A number of Autism Bulletin readers have written recently asking how to find information about health insurance coverage in their area. Here are some tips:

1.) Get in touch with autism advocacy groups in your state.

There are power in numbers when advocating for public policy changes, and advocacy groups such as the Autism Society of America and Autism Speaks have chapters in many areas around the nation. Even if the chapter in your state or metropolitan area doesn't have any one working on this issue, you can ask them if they know someone who is.

There is an active national network of advocates working on this issue and it pays to tap into their experience. For example, a group in Arizona has been advocating for autism insurance coverage and worked with Autism Speaks to create a document listing the reasons it makes sense, both economically and from a public policy perspective.

These groups can also help you understand what the state law is right now in your state. Some states, such as South Carolina and Texas, have passed laws that require health insurance plans to provide some coverage for autism services. You can read about a number of these states by looking at the Autism Bulletin archives on health insurance issues, or using the search box.

2.) Check with your health insurance provider about specific policies and terms that apply to your family's claims.

You should understand what coverage you have now, and what limits there may be for that coverage. For example, some health maintenance organizations may limit the number of occupational therapy visits a patient is allowed to claim; once you reach that limit, payments for every visit after that could need to come out of your pocket.

Side note: while you are waiting for policies to change, you can check to see if your employer offers an arrangement called a medical flexible spending plan. This is a federal tax policy which allows you to set aside money from your paycheck, up to $5,000 per year, for medical expenses. You can use this "pre-tax" money to pay for autism services. The effect is to stretch some of your dollars to pay for these services. The Internal Revenue Service has an information page here. And make sure to review with your tax adviser what using this money means for your income tax returns.

3.) Call your state representative and ask what's going on.

Armed with information from advocates and your health insurance policy, get in touch with your state representative or state senator to let them know you are interested in what's going on with insurance coverage for autism.

Understand that a number of states have set up special commissions to study the issue of autism spectrum disorders, as a first step to figuring out what to do. So you can ask if your state has done one of these studies, and where to find a copy.

Some states have legislators who have personal experience with autism spectrum disorders. Every state should have lawmakers who care about healthcare, special education, and/or people with disabilities. So if you find no help at your state representative's office, figure out who may give you a more sympathetic hearing. Just be aware that insurance companies and people who disagree with you are doing the same thing.

Project Vote Smart has a very helpful website that helps you find your elected representatives by your Zip Code.

4.) Be an engaged citizen and participate in our democracy.

All of these steps involve paying attention and being willing to get involved in a political discussion. It's easy to feel like there's not much any one family, any one parent can do, to help move the global or national needle on autism services. But as the saying goes, many hands make a big load lighter.

So read the news. Ask questions. Find others who care about this issue and talk about it with them. And see what happens.

Observers of this issue also will note that while representatives of the insurance and business lobbies have lined up to oppose more insurance coverage for those with autism in states like Pennsylvania and Texas, this is not a partisan issue. All you have to do is read about South Carolina, where a Republican lawmakers overrode the governor's veto in 2007 to pass autism insurance legislation. And who led the charge, to get them to do that?

Three families, led by three moms.

A Reflection on Autism Awareness Month, 2008

2008-04-22T20:58:00.007-04:00

A confession: Years ago, when my family first began to learn about autism, I didn't think much about "Autism Awareness Month." It seemed like an innocent gesture, but also a naive wish for good will and public recognition for a condition that wasn't well understood. And, it seemed to me back then, it was one effort (among many) to grab a spotlight for a public tired of such things.

I have changed my view. This month, in the midst of some demanding times at work (which have left me fewer chances to post to Autism Bulletin), I didn't have much time to think about autism awareness. And yet the issue found me, as I took a walk near my home yesterday and saw a sign hanging at the public library proclaiming to passersby that it is Autism Awareness Month.

I realized this Autism Awareness Month is an essential symbol, and, potentially, a supportive lifeline to parents who must know: You are not alone.

You are not alone when you struggle with a challenging behavior problem, at home, at a family gathering, a house of worship or at the mall.

You are not alone when you find yourself sitting with people who have trouble understanding what you are going through—be they friends, family members, educators or health care professionals.

You are not alone when you have to make difficult choices, be they decisions about finances or careers, or just about how you would spend family time—choices that many other families are not put in a position to make.

And you are not alone when you find creative reasons to celebrate. Good behavior? Celebrate! Avoiding bad behavior? Celebrate! An advance in swimming, reading, eating, sitting at a table, brushing teeth, pretend play, peer communication, [fill in your favorite here]? Celebrate!

And so we are not alone when we recognize that it's Autism Awareness Month, and give credit to the efforts of advocates around the world who have not only elevated the profile of autism as an urgent public policy issue but have helped us understand we are not alone.

Some examples, from my e-mail in-box:

• April 2 was World Autism Awareness Day, an effort involving Autism Speaks, a leading advocacy group. Organizers scheduled events in more than 20 countries and at the United Nations in New York to discuss autism spectrum disorders, remove the stigma associated with the diagnosis and build societal supports for families.

• The head of the Autism Society of America rang the opening bell at the NASDAQ stock market on April 3.

• Toy retailer ToysRUs continued its efforts in past years by highlighting products that are suited to kids with disabilities. They worked with Autism Speaks to create the list. Clearly, this is geared to make sales for the retail chain, but they did choose to create this list which you can find here.

Those were just some of the events. Maybe you noticed them, or maybe you noticed media coverage about them.

Then again, maybe you didn't because you have too much to do, and you barely have time to do much of anything except to keep your life going. That would be understandable.

Just know that there are people like you doing the same.

Audio: Interesting Show on Autism at "Studio 360"

2008-03-31T22:35:00.006-04:00

"No matter how hard he tries he knows he can't fit into the NT [neurotypical] world."

That's how radio producer Tamar Brott describes Jonthan Mitchell, a 52-year-old writer who has Asperger's. He is very high-functioning on the autism spectrum, and he writes stories that delve into his feelings of alienation, longing, obsession and rejection of special education programs. A profile of Mitchell is the first five-minutes of an illuminating hour-long public radio program on the arts and society at Studio 360 with Kurt Andersen.

A key reason you might want to listen to the program is Andersen's conversation with Blythe Corbett, assistant professor of clinical psychiatry, at the M.I.N.D. Institute, University of California at Davis. The Institute is a leading venue for autism research, and Corbett discusses in very clear language how scientists are examining research trends in genetics, environmental and other threads of inquiry to help them understand the origins of autism spectrum disorders. (The gist is that researchers are in the early stages of their work, and they are looking at a combination of factors that could include genetics, environmental factors, parental age and more.)

Below, find an audio clip of the first 11 minutes of the episode, which profiles Mitchell and introduces the rest of the show:

Other parts of the show discuss an art project organized by the M.I.N.D. Institute, and discussions of Amanda Baggs, a well-known autistic video blogger and neurodiversity advocate, and the film Autism: The Musical.

Find the Studio 360 website with a writeup of this episode by clicking here.

Information About "Autism: The Musical" Documentary on HBO

2008-03-22T21:41:00.005-04:00

The documentary "Autism: The Musical" is scheduled to appear on HBO starting March 25 at 8 p.m., and run various times through April 27. The documentary, directed by Tricia Regan, follows a group of autistic children and their families as they prepare to participate in a musical production in Los Angeles.

Tricia Regan gave an interesting interview with an online video program called The Alcove with Mark Molaro, in which she discusses her experiences filming the families and kids in this documentary. She explains how she saw how having an autistic child changes the lives of parents and their families, and how she came to see these families as heroic.

I found Regan's comments to be sensitive and interesting and so I have embedded a copy of the 18-minute video interview below. (If you have trouble seeing it you can also find it here.)

Also see:

Film Review: Three Reasons to See "Autism: The Musical"

McCain Says He Believes Vaccine Preservative Is Factor in Autism's Rise

2008-03-05T21:36:00.005-05:00

Sen. John McCain of Arizona, the presumptive Republican presidential nominee, has gone on record as saying he believes that a mercury-containing preservative that was used in vaccines administered to young children is behind the rise in autism spectrum disorder.

The statement has created much buzz in the blogosphere because it taps into a raging controversy in the autism community about the causes of autism spectrum disorders and whether thimerosal, a mercury-containing preservative that is used in some vaccines, and used to be more widely used in routine shots very young children get, is a factor. While there are passionate advocates who believe there's evidence for this, there have also been a number of scientific studies published in recent years which have failed to establish this link, including a study published in January (see: California Study: Autism Cases Rise In Spite of Vaccine Changes).

McCain's statement came in response to a question at a forum Feb. 29 in the days before the Texas primary, according to the ABC News Political Punch blog. Here's a snippet from the coverage:

At a town hall meeting Friday in Texas, Sen. John McCain, R-Ariz., declared that "there’s strong evidence" that thimerosal, a mercury-based preservative that was once in many childhood vaccines, is responsible for the increased diagnoses of autism in the U.S. -- a position in stark contrast with the view of the medical establishment.

McCain was responding to a question from the mother of a boy with autism, who asked about a recent story that the U.S. Court of Federal Claims and the National Vaccine Injury Compensation Program had issued a judgment in favor of an unnamed child whose family claimed regressive encephalopathy and symptoms of autism were caused by thimerosal.

"We’ve been waiting for years for kind of a responsible answer to this question, and are hoping that you can help us out there," the woman said.

McCain said, per ABC News' Bret Hovell, that "It’s indisputable that (autism) is on the rise amongst children, the question is what’s causing it. And we go back and forth and there’s strong evidence that indicates that it’s got to do with a preservative in vaccines."

McCain said there’s "divided scientific opinion" on the matter, with "many on the other side that are credible scientists that are saying that’s not the cause of it."

The ABC News article goes on to cite a number of studies and statements from the medical establishment refuting McCain's view.

There is great interest among parents and families of people with autism spectrum disorders in this election year, and for good reason: the next president will have an influence over federal research dollars devoted to autism research; what kind of approach the Department of Education (and its experts on special education) will pursue in administering special education laws; how much federal aid to devote to education; what kinds of actions to take (or not take) in addressing the needs of disabled Americans; what kinds of judges to appoint to make decisions in cases involving disabled citizens including those with autism; and more (like whether to make autism an issue at all).

It's no wonder that more than half of Autism Bulletin readers who have voted in an unscientific poll cite "autism services" as a key issue in their vote. (See, Where Do Autism Services Fit Into Your Views on the Presidential Race?)

So McCain's views are interesting on this issue, and have raised hackles in the scientific community, as this post from The Chronicle of Higher Education indicates.

So far, this is McCain's only statement so far relating to auitsm during the campaign. A search on the McCain for President website using the word "autism" turns up a blank.

If you know of more statements by John McCain relating to autism, that involve more than the vaccine issue, please post a comment here.

Also see:

• Obama Unveils Disabilities Plan, Includes Autism in Agenda

• Autism Makes Ripple in Presidential Race as Clinton Promises to Spend $700 Million Per Year

• Where Do Autism Services Fit Into Your Views on the Presidential Race?

More on Colorado Autism Insurance Case: Q&A with Tappert Family's Lawyer

2008-02-23T10:20:00.009-05:00

R. Craig Ewing is managing partner at Ewing & Ewing, the Englewood, Colorado law firm which represented the Tappert family, who recently won an arbitration case for their health insurer to cover autism-related services for their young daughter Abby. Mr. Ewing last month agreed to respond to some questions I sent him via e-mail.

You can read more about the case in this article: Colorado Family Wins Insurance for Autism Services. A related article cited in the transcript below is here: After Colorado Arbitrator's Decision, More Information About Lovaas Model of Applied Behavior Analysis.

A key issue in this case was that the arbitrator's finding that Applied Behavior Analysis (ABA) is not an experimental therapy, but in fact an early intervention best practice for children with autism spectrum disorders—and a service the insurer should cover. With advocates around the nation seeking to win support for legislation expanding such insurance coverage, Mr. Ewing suggests this arbitration decision could shed some light on what it takes to win support from organizations who may seek to deny such benefits.

The following is a transcript of his responses to questions:

1. How important is the arbitrator's decision?

We believe that the arbitrator's decision is quite important in that it recognizes that ABA therapy is medically necessary when children with autism engage in self-injurious behaviors. We also believe that it casts doubt on many other insurer's medical policies (also known as clinical guidelines) that equate all forms of ABA therapy with "Lovaas therapy."

I note with interest the letter from Scott Cross and Vincent J. LaMarca, BCBA on your website [see the letter here]. The arbiter's comments regarding Lovaas therapy are based upon the expert testimony of Dr. Phillip S. Strain and his review of Anthem's medical policy. I am attaching Dr. Strain's affidavit as well as Anthem's medical policy for your review. As you will note in reviewing the same, Anthem (as well as many other insurers) deem ABA therapy to be experimental and investigational because of the scientific criticisms of Dr. Lovaas' research. Thus, it is important to distinguish pivotal response training and other forms of ABA therapy from "Lovaas therapy" in order to defeat the rationale advanced by many insurers.'

To the extent it is not confidential, I am very interested in sharing the information I gleaned through discovery on the Tappert case with Mr. Cross, Mr. LaMarca and others at the Lovaas Institute for the purposes of working with them to rebut the position taken with respect to Lovaas therapy by many insurers/third party administrators in the United States.

I am also enclosing United Healthcare's medical policy. As you will note, it relies on the criticisms of Dr. Lovaas' research as a basis for deeming all forms of ABA therapy "experimental and investigational."

2. How far-reaching might the Tappert's victory be?

The Tappert's victory opens the door for coverage for ABA therapy of the type Abby Tappert receives for Colorado residents who purchased the Anthem policy at issue. This is a major breakthrough for this subset of people.

While the Arbitration Award (opinion) is not direct legal authority in the same sense that a decision from the Colorado Court of Appeals or Colorado Supreme Court would be, it is written by William G. Meyer, a highly respected former Denver District Court judge. The opinion is thoughtful and well reasoned and no doubt it will be used by attorneys to support their clients' claims for autism coverage.

In his opinion Judge Meyer's states: "It appears both from the greater weight of the references and credible testimony that ABA therapy is the standard of care in treating autism." This statement should resonate with any judge or fact finder who confronts these issues.

3. What role did Colorado state law play in your advocating this case on behalf of the Tapperts? How does the law as it stands now in Colorado help or hinder your efforts?

The fact that the Tappert policy was not subject to the Employee Retirement Income Security Act of 1974 ["ERISA"] made the case easier with respect to the standard of review employed by the arbiter. In terms of Colorado state law, Colorado's common law that requires ambiguous terms of an insurance policy to be interpreted in favor of coverage was helpful in this case.

4. Have you been following developments in other states, notably South Carolina and Texas, that have sought to pass legislation to require insurers to cover ABA and other autism-related services? There are other states which are considering similar moves, and I am wondering if this arbitration decision gives advocates of autism services coverage any points they may use to argue in favor of their efforts?

Since becoming involved in this case, I have become very interested in the legislation regarding autism in other states. Given that approximately 1 in 150 children have been diagnosed with autism, funding for treatment must be addressed. It is my opinion that a neutral [party]'s recognition that ABA therapy is the standard of care for the treatment of children with autism may be useful to others seeking to enact legislation to require insurers to cover this expensive, but much needed treatment. I am hopeful that with more decisions recognizing the efficacy of ABA therapy, legislators will be more inclined to find ways to fund this treatment.

One last note: Mr. Ewing declined to say for publication on this blog whether he saw how insurers who study the Tappert case might try to bolster their efforts to deny coverage of ABA or other autism services.

Special Series of Articles for Parents, Families New to Autism Diagnosis

2008-02-18T11:00:00.003-05:00

BabyZone.com, a website for parents of young children, has just published a four-article series I wrote to help parents and families who are new to autism spectrum disorders—what autism is, what it means for their families, how to find ways to help their children. You can find the links to all four articles below:

What to Do When Your Child Gets an Autism Diagnosis
When your child receives an autism diagnosis, there are many more questions than answers about what it means and what you need to do. Here's how to start the effort to help your child grow and develop—and how to make sure you take care of everyone in your family (yourself included). More

Understanding Autism Spectrum Disorders
Experts like to point out that no two children with autism are quite alike. While that lack of clarity can be frustrating for parents, it demonstrates that researchers and doctors continue to refine their understanding of autism. Here is brief description of the places on the autism spectrum. More

A Basic Guide to Well-Known Autism Therapies

Because autism is a serious disability, and early intervention so important, families tend to do as much for their diagnosed children as they can fit into their lives and budgets. Here is a guide to the most well-known treatments and techniques for helping young children with autism make developmental gains, along with advice for evaluating these approaches and resources to find more information. More

Autism Spectrum Disorders: Finding Support & Resources
If your child was recently diagnosed with an autism spectrum disorder or you're just looking for support and advice from families in similar situations to yours, read on. More

Interesting List of Blogs by Parents of Kids with Autism

2008-02-17T22:36:00.001-05:00

When I asked for suggestions for interesting blogs by parents of kids with autism spectrum disorders, I received dozens of suggestions. You can see the original post here, complete with comments.

Here is a list of the most popular nominations I received:

Autismville, by Judith Ursutti
Autismvox.com, by Kristina Chew
About.com’s Autism blog by Lisa Jo Rudy
The Family Room by Susan Etlinger
Susan Senator's blog, the author of Making Peace with Autism
Whitterer on Autism, by Madeline McEwen-Asker

Parents noted their wide range of reasons for sharing these and other blogs, including the real-life experiences these parents share about raising their kids who have autism spectrum disorders; others noted some of those cited above share their sense of humor through this challenging parenting experience. And still others find value in the information they share.

This is by no means an exhaustive list. As the comments field on the previous post shows, new parent blogs are starting up every day. You can find many more autism-related blogs, including a number of blogs by adults with autism. You can do a search for autism at places like Google Blog Search and Technorati. You can find special autism blog directories, too; a big one is called Autism Hub, based in the U.K.

In one sense, the sheer number of blogs can seem overwhelming; so much to scan, so little time to do it. But there's also a reassuring note to all this activity; you're not in this alone, you can tap into what other parents are going through. Chances are, it's some of the same things you are facing, and they may have some insights to share with you. The web is a great medium for that kind of expression.

A Basic Guide to Well-Known Autism Therapies

2008-02-16T19:49:00.002-05:00

BabyZone.com, a website for parents-to-be and parents of young children, has published another article I wrote to help parents and families who are new to navigating the world of autism services.

You can find the article here: A Basic Guide to Well-Known Autism Therapies. The article notes:

Because autism is a serious disability, and early intervention so important, families tend to do as much for their diagnosed children as they can fit into their lives and budgets. Here is a guide to the most well-known treatments and techniques for helping young children with autism make developmental gains, along with advice for evaluating these approaches and resources to find more information.

The article includes information on many services families consider to help their kids, with links to other articles and organizations which can provide more information on each kind of service. The article's sections include:

Please note that people have written books about each of these subjects above; this article is designed to provide families confronting an autism spectrum disorder diagnosis with useful information. It's an effort to help families get started on their efforts to help their child.

Research Finds Families of Kids with Autism Try Five Simultaneous Treatments on Average

2008-02-10T21:03:00.000-05:00

Parents of children with autism spectrum disorder don't try just one thing to help their children: they tackle multiple approaches, research from the Interactive Autism Network shows.

On average, children with autism undergo five simultaneous treatments, according to preliminary data published last month. The data comes from surveys filled out by more than 4,000 families.

As you will note from the list of most common treatments below, researchers define the term "treatment" broadly: it can mean services delivered by educators, therapists and medical prescription; special diet; treatment can also mean social stories, which use pictures and symbols as well as words to tell kids with autism what to expect on a family outing, dentist visit or other situation; social skills groups; and weighted blankets or vests.

The Most Common Approaches

Based on the survey data, the most common treatments are listed below:

1. Speech and language therapy
2. Occupational therapy
3. Applied Behavior Analysis (ABA)
4. Social skills groups
5. Picture Exchange Communication System (PECS)
6. Sensory integration therapy
7. Visual Schedules
8. Physical therapy
9. Social stories
10. Casein-free diet
11. Gluten-free diet
12. Weighted blanket or vest
13. Risperdal
14. Melatonin
15. Probiotics

What the Researchers Notice So Far

The list above accounts for more than half of the treatments that families filling out the surveys list, though researchers emphasize that they have to do a lot more analysis of their data to get a clearer picture of what's going on. See a public notice about the research here.

In fact, trying to get a clearer picture of what's going on is a main thrust of this project. The researchers note:

Hundreds of autism treatments are currently in use. In many cases, there is little or no scientific evidence to support their effectiveness. Parents of children with ASD, driven to help their children and knowing time is of the essence, are unable to wait for answers. They find themselves making all sorts of choices and trying all sorts of remedies, often in the absence of adequate information.

So many parents have gone through this: researching, agonizing, choosing, evaluating, dropping treatments, adding treatments... and trying to find a combination that keeps their child stable, healthy, present, and able to learn and grow. Most would agree that going through this process is a nightmare.

Parents need answers. Too many have participated, unwillingly, in the great autism treatment experiment. By collecting data on families' treatment experiences, IAN hopes to contribute to the effort to identify effective treatments, as well as to guide decision-makers prioritizing which not-yet-proven treatments to study.

That last note suggests that these researchers are seeking to apply some rigor to understanding parents' testimonies about what they see happening with their children—what works and what doesn't—so they can influence research directions in the future.

As for this survey sample, the researchers note that thousands of survey respondents reported that their kids are taking vitamins, minerals and prescription drugs. More specific data about this and other findings are due to be released at an unspecified future date.

Who is the Interactive Autism Network?

The Interactive Autism Network is a web-based project of the Kennedy Krieger Institute, a research and educational organization in Baltimore that specializes in developmental disabilities including autism spectrum disorders. The organization received funding from Autism Speaks, the major nonprofit group, to start the project in January 2006.

Letter to Autism Bulletin: A Window into Autism Services in North Carolina

2008-02-09T10:12:00.000-05:00

Dr. Mark Carroll is president-elect of the North Carolina chapter of the American Academy of Child and Adolescent Psychiatry. Dr. Carroll wrote to share some of his observations about the autism services needs of people in his area near the Blue Ridge Mountains after reading an article I wrote called "Understanding Autism Spectrum Disorders" (see the article here, and a short synopsis here).

Dr. Carroll said the North Carolina Council of Child and Adolescent Psychiatry, is pursuing a new advocacy initiative this year to raise awareness about the need to better serve people with autism spectrum disorders. He gave me permission to publish his letter while emphasizing that the views are his alone, not those of his group. (Note: TEACCH is an approach to delivering autism services that stands for Treatment and Education of Autistic and related Communication-handicapped Children.) Here is the letter:

I am a child and adolescent psychiatrist practicing
community psychiatry mainly in the rural communities
from Winston-Salem, N.C., northwest to the Blue Ridge
Mountains. We are fortunate to have a Developmental
Evaluation Clinic at Wake Forest University and a
TEACCH office in Greensboro.

Still, most of the local treatment options for autism are in our
schools. The state has a Community Alternatives
Program for developmental disabilities and for
autism, but it has become underfunded with a waiting
list of up to seven years. Many families have no
services at all once the school day is over. Our
state has been privatizing mental health services,
meaning that employers are smaller and more fragile
with a resultant "brain drain." There are fewer and
fewer therapists and skilled workers. For the past
ten years, I have been the lone child and adolescent
psychiatrist serving two counties with a combined
population of nearly 150,000.

Those of us providing professional mental health
services try to keep up hope. There is an election
for governor this year, and a new website
www.votencmentalhealth.org designed to inform voters
about candidates and mental health issues.

As you might imagine, it has become a challenge
helping families sort out information when the
internet can seem so much more accessible than local
professionals who may seem not only busy but spread
so thinly. I plan to refer families to your blog,
hoping they will find it to be a balanced and
helpful resource. Who knows, you may even get an
e-mail or two.

Thanks again for your interest and dedication.
Regards,
Mark B. Carroll, M.D.

Another Source for Presidential Campaigns and Autism Policy

2008-02-01T19:56:00.000-05:00

The Autism Society of America has assembled some more references to the candidates' statements on autism spectrum disorders and government policies.

You can find that website page here.

Also see:

• Obama Unveils Disabilities Plan

• Autism Issue Makes Ripple in Presidential Campaign as Clinton Promises to Spend $700 Million Per Year

Obama Unveils Disabilities Plan, Includes Autism in Agenda; Other Notes for Super Tuesday Primaries

2008-01-31T22:51:00.000-05:00

Sen. Barack Obama's presidential campaign on January 29 held a teleconference to highlight the Illinois democrat's agenda for Americans with disabilities. You can find more information here, including a short video from Obama in which he specifically cites the need to screen children around age 2 for autism.

You can find Obama's nine-page position paper on helping Americans with disabilities is on his website here.

Obama's platform on disabilities integrates autism supports into overall plans to provide universal healthcare coverage for, better educational services through full funding for the Individuals with Disabilities Education Act. It also includes incentives for employers to hire people with disabilities and plans to support community-based residential options for people who can't live on their own. Interestingly, it includes an explicit pledge to appoint federal judges who are sensitive to the needs of disabled citizens.

Near the end of the position paper, at the bottom of page 8, comes this statement about autism:

Supporting Americans Living with Autism Spectrum Disorders: More than one million Americans live with an autism spectrum disorder (ASD), a complex neurobiological condition that has a range of impacts on thinking, feeling, language, and the ability to relate to others. As diagnostic criteria broaden and awareness increases, more cases of ASD have been recognized across the country. Barack Obama believes we need to research treatments and search for the causes of ASD. He has been a strong supporter of more than $1 billion in federal funding for ASD research on the root causes and treatments. Obama believes we must work to guarantee that Americans with ASD can live independent and fully productive lives and to assure that their families understand and are able to support a loved one with ASD. Obama will fully fund the Individuals with Disabilities Education Act to ensure that no child with ASD or any other disability is left behind. Obama will also fight to assure that the government and our communities work together to provide a helping hand to people with ASD and their families.

Obama has a long record supporting people with ASD. In the state senate, Obama sponsored legislation that became law to create the ASD Program - a systems development initiative designed to promote the implementation of evidence-based practices. And in the U.S. Senate, Obama is also a cosponsor of a measure that would expand federal funding for life-long services for people with ASD, authorizing approximately $350 million in new federal funding for key programs related to treatments, interventions and services for both children and adults with ASD.

As the field of presidential candidates shrinks—Democrat John Edwards and Republican Rudy Giuliani bowed out this week—it's notable that the two major Democrats left in the race, Sen. Hillary Clinton, and Obama, each have issued important pledges of support for people with autism. More coverage on Clinton's autism advocacy is below.

I have been looking for coverage or position papers by Republican candidates related to autism, but have failed to see anything from the campaigns of Mitt Romney, Mike Huckabee or Ron Paul. The group A-Champ (Advocates for Children Affected by Mercury Poisoning) has issued a statement hailing Sen. John McCain of Arizona for requesting a Senate hearing on autism including the issue of mercury in vaccines.

If you know more about where the Republican stand on this issue, please post a comment here.

Autism support is an issue for parents and family members of people with autism to think about when they vote for president, according to a poll posted here on December 17. More than half of those who participated in the survey identified autism services as the most important issue influencing their vote—ahead of the Iraq war, the economy, and education. It's a small, self-selected sample, but interesting for what it's worth.

Also see:

• Where Do Autism Services Fit Into Your Views on the Presidential Race?

• Autism Issue Makes Ripple in Presidential Race as Clinton Promises to Spend $700 Million Per Year

• Autism Bulletin's 2007 Advocates of the Year

Which Autism Parent Blogs Do You Like?

2008-01-23T22:03:00.000-05:00

When I told a colleague of mine that there are many parents of children with autism spectrum disorders who discuss their experiences in blog posts, she asked me to compile a list.

I have some in mind, but am looking for more. So I am asking Autism Bulletin readers for your suggestions. Please answer this question:

Which blogs by parents who describe their experiences raising children with autism do you find helpful? Why?

Please also share the website address of any blogs you choose. You can post your suggestions by adding a comment to the end of this post, or you can send me an e-mail message at michaelsgoldberg AT yahoo DOT com. I will share the list I compile in a later post.

Understanding Autism Spectrum Disorders

2008-01-22T22:46:00.000-05:00

BabyZone.com, a website for expectant and new parents, has published an article I wrote entitled, "Understanding Autism Spectrum Disorders." You can find it by clicking on the link here.

This article is a primer for people such as parents and grandparents who are just learning about autism and who may not know much about the diagnostic criteria doctors and other child development specialists use to tell if a toddler has an autism spectrum disorder. It lays out the criteria for the different places on the autism spectrum while pointing out how difficult this whole process can be for parents:

It's common to hear autism experts say that no two children who receive the diagnosis are exactly alike. One person with autism may not be able to talk, while another will talk a great deal, nonstop, about subjects that interest him intensely. Some people with autism display very high levels of intelligence, while others may have mental retardation.

This lack of black-and-white clarity can be frustrating for parents and family members new to autism who seek to understand what's going on with their very young child and try to assess how this diagnosis will influence not just their child, but everyone in the family.

The article includes one important piece of new information: the American Psychiatric Association, the body that publishes the Diagnostic and Statistical Manual of Mental Disorders which defines autism, plans to update its published definitions in 2011, according to Autism Speaks and this tentative timeline from the association itself. That will be version 5, or DSM-V.

Other links that Autism Bulletin readers may find interesting:

• A preview version of the DSM-IV-TR (version 4, text revision), is available online via Google Books Search website, with some pages missing. Click here.

• The American Academy of Pediatrics paper, "Identification and Evaluation of Children With Autism Spectrum Disorders" in the journal Pediatrics, November 2007

• The Centers for Disease Control autism site

• The National Institute of Mental Health autism spectrum topic page

• The M.I.N.D. Institute at the University of California at Davis, a leading research site for early diagnosis of autism

• Unstrange Minds: Remapping the World of Autism (Basic Books, 2007) by Roy Richard Grinker, an anthropologist and father of a daughter with autism who writes an interesting discussion of Leo Kanner's work. Kanner was among the first doctors to document autistic traits in his patients.

• An interactive timeline charting the history of autism, by Jane Lytel

Also see:

What to Do When Your Child Gets an Autism Diagnosis

Request for Information: Researchers Compiling List of Autism Advocacy Groups in California

2008-01-17T21:44:00.000-05:00

Researchers at Columbia University who are studying autism advocacy efforts under a grant from the National Institutes of Health are seeking information from the autism advocacy community to help them build a directory of California-based groups.

The researchers are looking into all the possible factors they can study to help explain why the prevalence of autism continues to rise. They plan to make the information they collect available to the public. They put out their request for information on Jan. 11, and are seeking this information by February 15, 2008.

You can learn more about the "Project on the Social Determinants of Autism" by clicking here. You can read an Autism Bulletin article on the project here: Study of Social, Environmental Factors in Autism Subject of High-Profile NIH Grant.

Here is the text of the request for information:

We are a group of researchers at Columbia University who would like to compile a list of autism advocacy and nonprofit organizations in the state of California into a comprehensive directory. We are interested in organizations of all sizes, types and locations. We hope to make this directory a publicly available all-inclusive resource serving the autism community, in addition to helping us answer some of our research questions related to understanding the autism epidemic.

This research is funded by the 2007 NIH Pioneer Award, to Peter Bearman.

If you work for or participate in an organization or group in California we would very much appreciate it if you could send us the name of the group and any contact information you may have. Once we build a complete list, we will contact those organizations directly.

To write us, please send an email to autism-iserp@columbia.edu. For further information on the project please visit our website at http://www.iserp.columbia.edu/centers/autism.html. Thank you in advance for your time and assistance in accomplishing this project.

More About the Research Project

Background from the group's website:

Since 1965 advocacy and nonprofit organizations have played a priceless role in thrusting autism into the public eye through working with local communities, lobbying on national legislative levels, and pushing for funding of autism research. The parent-researcher-advocate triad model was and continues to be critical to the evolution of the autism advocacy movement.

In our project, we are aiming at a better understanding of the diverse roles and scope of activities of these organizations , how efficacious the autism advocacy movement has been and its role in disseminating information about autism and autism spectrum disorders to the public.

Researchers Identify Genetic Flaw in One Percent of Autism Cases Studied

2008-01-09T21:47:00.000-05:00

Researchers at the Boston-based Autism Consortium today said they had discovered evidence that a genetic flaw appeared to play an important role in about one percent of 1,500 autism cases studied. While the findings, called a chromosomal abnormality on chromosome 16, represent a very small portion of the autism population, scientists hailed them as a promising clue for more research into the possible causes of autism spectrum disorders.

The New England Journal of Medicine published the study (titled "Association between Microdeletion and Microduplication at 16p11.2 and Autism") on its website, which you can find here. The Autism Consortium published a press release about the research here. And The New York Times posted a useful summary about the research in an article "Study Says DNA Flaw May Raise Autism Risk."

The Times story includes this quote: “This is a fantastic study, in that it points us toward a path, gives us an idea of where to look,” said Thomas Lehner, chief of the genomics research branch at the National Institute of Mental Health, who was not involved in the research. “However, it also shows we have a long way to go to understand what is a very complex disorder.”

The researchers said the analysis they performed indicated that, the chromosomal flaw, "was de novo, a newly occurring change in the DNA that the affected individual did not directly inherit from either parent" in the majority of cases studied. This chromosomal flaw leads to a susceptibility for autism spectrum disorders.

About the Researchers and What Happens Next

It takes a lot of high-powered researchers and costly information technology to administer DNA tests and process genomic research; that much is clear from reading materials provided by of the Autism Consortium. One goal the researchers have is to reduce the costs of these tests so they can collect more samples.

The Consortium statement adds:

Future plans of the Autism Consortium include further analyses to identify additional genes involved in ASDs, research to understand traits that may be associated with specific genetic differences and the mechanisms at work. The ultimate goal is to better understand the efficacy of current treatments available and to develop new treatments.

Eric Lander, Director of the Broad Institute of MIT and Harvard said “Our collaboration with the Autism Consortium is changing the face of research in autism spectrum disorders. We are beginning to develop a full understanding of the autism spectrum disorder genome, which in turn leads us to understanding the different types of autism, the etiology and effect of each type, and ultimately, will lead to the discovery of treatments that have the greatest promise.”

In addition to medical researchers and geneticists at a group of 14 Boston area hospitals, the research involves the Autism Genome Research Exchange (AGRE), a program of Autism Speaks, which officials said seeks to share genetic data with the scientific community in what sounds a bit like an open source software project. The project allowed researchers to scan genetic data from more than 3,000 people, including 1,441 diagnosed with an autism spectrum disorder.

In addition to the genetic database information, the AGRE database included information on traits and behaviors of the individuals. The Autism Consortium team took advantage of a new gene scanning technology from Affymetrix, a Silicon Valley company that provides analytics tools for genetic researchers; and deCODE Genetics Inc. in Iceland, a biopharmaceutical company that studies genetics so it can produce new drugs.

The Autism Consortium itself includes 14 leading universities and medical centers in the Boston area. Here's more from the press release description:

The Consortium includes families, researchers and clinicians who have joined together to radically accelerate research and enhance clinical care for autism spectrum disorders. A private nonprofit, funded entirely by donors, the Consortium is ground-breaking in a number of ways. We focus on families, linking them to the resources they need and supporting them in participating in research studies to understand and treat autism spectrum disorders.

The Consortium brings together the best minds across Boston, from Beth Israel Deaconess Medical Center, Boston Medical Center, Boston University, Boston University School of Medicine, Broad Institute of MIT and Harvard, Cambridge Health Alliance, Children’s Hospital Boston, Harvard University, Harvard Medical School, Massachusetts General Hospital, Massachusetts Institute of Technology, McLean Hospital and the Floating Hospital at Tufts-New England Medical Center.

California Study: Autism Cases Rise in Spite of Vaccine Changes

2008-01-08T21:16:00.000-05:00

California public health researchers have found that the prevalence of autism spectrum disorders in young children has risen, even after doctors stopped using a mercury-containing preservative thimerosal in the vaccines babies receive.

The study, "Continuing Increases in Autism Reported to California Developmental Services System," is published in the January 2008 issue of Archives of General Psychiatry. The journal has made the full text of the article available online here.

The study asked: Since people are concerned that the mercury preservative used in vaccines causes autism, what happened after 1999, when the government and doctors recommended the nation stop using vaccines containing thimerosal for infant inoculations such as DTP (diphtheria, tetanus and pertussis) and hepatitis B?

Instead of seeing a decrease in autism diagnoses, the state Department of Developmental Services (DDS) saw an increase in the estimated prevalence of autism cases. For each quarter from 1995 through the end of 2003, the prevalence of autism increased from 0.6 to 2.9 per 1,000 live births. (The prevalence for all developmental disabilities including autism also increased, from 5.4 to 8.9 per 1,000.)

The study authors continue: "From 2004 through March 2007, when we estimate exposure to thimerosal-containing vaccines during infancy and early childhood declined, the prevalence of children aged 3 to 5 years receiving services for autism continued to increase from 3.0 to 4.1 per 1,000 lives births."

The authors report in their conclusion:

Infants and toddlers in the United States were exposed to more of the ethylmercury-containing preservative, thimerosal, after recommendations in 1991 for universal administration of the hepatitis B virus and Hib [Haemophilus influenzae type b] vaccines.

They have been exposed to less thimerosal since at least the national recommendation in 1999 for its removal from childhood vaccines. If thimerosal exposure is a primary cause of autism, then the prevalence of autism would be predicted to decrease as young children's exposure to thimerosal has sharply decreased to its lowest levels in decades. We have instead found that the prevalence of autism in children reported to the DDS has increased consistently for children born from 1989 through 2003, inclusive of the period when exposure to TCVs [thimerosal-containing vaccines] has declined.

Moreover, since 2004, the absolute increase and the rate of increase in DDS clients aged 3 to 5 years with autism were higher than those in DDS clients of the same ages with any eligible condition, including autism. These time trends are inconsistent with the hypothesis that thimerosal exposure is a primary cause of autism in California.

Context for the California Study

This is the latest in a series of published research articles that fail to find a causal link between thimerosal and autism. There have been numerous media reports, analysis pieces, opinion articles, and books urging parents to trust the research and get their kids vaccinated.

Meanwhile, a special court in Washington is hearing a series of cases arguing that evidence shows that vaccines harmed their children and demanding compensatory damages.

But while ABC News reports today that the latest California study "may be the latest nail in the coffin of a theory that draws a link between the mercury-containing vaccine additive thimerosal and autism," the controversy is likely to continue.

The same day as the research report came out, the advocacy group SafeMinds.org, which supports research on the "potential harmful effects of mercury and thimerosal," had posted this note about the California study:

SafeMinds arrives at a different interpretation of the findings, showing that the data can equally support a primary causative role of thimerosal if autism causation is multifactorial. Vaccine components and environmental mercury, as well as other toxicants, are additional likely candidates. Deficiencies of the DDS data and imprecise thimerosal exposure assumptions make determination of the contribution of thimerosal to autism rates difficult. The increase in autism cases reported by Schechter and Grether since the 1980s highlights the urgency of the autism epidemic and the need to institute a rigorous and comprehensive environmental factors research program.

Also see:

* Autism: Why the Debate Rages, an article by CBS News correspondent Sharyl Attkisson.

* Scientists Raise Voices Against Parents Vaccinophobia

* Medical Journal Traces Vaccine Controversy to Moment When Doctors Failed to Communicate Clearly About Risks

* Special Court to Hear Autism Case

One More Resolution to Make This Year: Attend an Autism Educational Event

2008-01-06T09:56:00.000-05:00

Getting through each day can be challenge enough for parents of children with autism spectrum disorders.

There's the schedule of activities, services to track. For many, there are also a child's behaviors to manage, whether that means avoiding a tantrum, redirecting stereotypical behaviors (such as hand-flapping) or encouraging positive behaviors on a community outing. There are jobs to do at work, bills to pay, other family members who need attention. And sleep is a good idea.

So why suggest attending an autism event? Isn't there enough to do?

Yes there is. But the benefits of getting out of the house and attending a lecture, movie, or other informational gathering are potentially important. Learning more about autism spectrum disorders in general, about approaches to helping people with autism, about the history of autism, about advocacy efforts—all of these activities allow you to understand more about what's going on with efforts to help people with autism while making you feel less alone when facing the daily challenge.

Where to Find Information About Autism Educational Events

You can start finding information about events by checking with other parents about lectures or other events they may have attended. Some events cost money to attend, but many events are free and I would recommend you start by attending a free event. Other places to look include:

* Local chapters of advocacy organizations like the Autism Society of America (which holds an annual convention with many lectures and presentations) and Autism Speaks. There are often other groups in major metropolitan areas besides these two big ones, so ask other parents.

* Universities with medical schools and scientific researchers who are doing research studies on autism.

* Professional organizations such as the Association for Behavior Analysis International, which holds regular meetings in the United States and other countries and attracts top researchers and educators to give presentations. While educators dominate the attendee list, I was among the klatch of parents who attended the 2007 conference in Boston and it was very useful. There is a big conference in Atlanta coming up Feb. 8 to 10, 2008.

* Schools that specialize in helping students with autism. The New England Center for Children, located outside Boston, this year is starting a series of informational sessions for parents. Topics include: transition planning for adult placement (Jan. 16), trends in autism research (Feb. 12), strategies for managing challenging behavior (March 12), feeding problems and solutions (April 15) and toilet training strategies (June 18). These lectures take place from 7 to 9 p.m., at the school in Southborough, Mass., and cost $30 for one person and $50 for two. Click on the school link above for more information.

* Local school districts may have a special education parents group that organizes free lectures and presentations. Contact your school district's special education office to see if they do.

* Trade associations that organize educational and marketing events also can be useful places for parents to learn what's going on. There is a conference Jan. 8 and 9 in Washington, D.C. for first responders to learn about helping people with disabilities during an emergency situation. You can read more about the "Disability and Special Needs Technical Assistance Conference" by clicking here.

Another example of a trade association is the American School Health Association conference. At last year's event, they had exhibits on technologies that help with communications challenges.

* The web has resources available, too. The online bulletin board assembled by The Schafer Autism Report which you can find here.

These are some examples. You may have more to offer. If anyone knows of other online bulletin boards or constantly updated events calenders, please post a comment at the end of this post or e-mail me at michaelsgoldberg AT yahoo DOT com.

Also see:

Why Families with an Autistic Child Need to Celebrate Mother's Day Frequently

What to Do When Your Child Gets an Autism Diagnosis

2008-01-03T21:49:00.000-05:00

BabyZone.com, a website site for parents of very young children, has published an article I wrote to help parents new to autism spectrum disorders understand what the diagnosis is about and what first steps to take. You can find the article here:

What to Do When Your Child Gets an Autism Diagnosis.

Take a look. While regular readers of Autism Bulletin and veteran parents of people with autism probably won't find any surprises, I would hope this article will help not just parents new to the subject but also grandparents, other relatives and friends.

Related Subject: Where Do Parents Find Support?

On a related subject, for a future Autism Bulletin article: I am very interested in sharing information about ways for parents and other family members find support for each other as they work to help their children with autism spectrum disorders. If you have suggestions for finding that support, please post a comment, or drop me a line at michaelsgoldberg AT yahoo DOT com.

Autism Bulletin's 2007 Advocates of the Year

2007-12-30T20:59:00.000-05:00

The past year saw important news for the autism community, including a big push by the American Academy of Pediatrics to make its members more aware of the need to diagnose autism spectrum disorders early, and big wins in South Carolina and Texas by advocates seeking to get health insurance companies to cover autism services.

Autism Bulletin's 2007 Advocates of the Year list includes the people and organizations behind those big events. It also includes other people and groups who made a difference—including a number of individuals nominated by readers. Thanks to everyone who shared their thoughts on these individuals' important efforts. Here are the picks for Autism Bulletin's advocates of the year:

The American Academy of Pediatrics.
It was big news in the fall when the American Academy of Pediatrics issued a call for doctors across the United States to offer routine diagnostic screenings for autism spectrum disorders. The group that has 60,000 members also published papers to educate its members about autism and what treatments offer important help for people on the spectrum, and a special package for doctors to educate themselves about ASD. The move is important as an awareness campaign, but its impact could have larger repercussions as it firmly legitimizes therapies such as Applied Behavior Analysis (ABA) which some insurers, school officials and medical professionals considered "experimental" and provides concrete baselines for service levels (25 hours per week, 12 months per year) for such therapies.

The South Carolina Parents Who Won "Ryan's Law."
There were tears, hugs and celebrations in the lobby of the South Carolina capitol building last June, and they were justified: the state Legislature had just overridden the governor's veto to pass legislation that requires health insurers to cover services for children with autism up to age 16. Not only did these parents and other advocates led by Lorri Unumb (Ryan's mom) and Lisa Rollins work tirelessly to educate state lawmakers about the need—and relatively modest costs—for such coverage. They have organized advocates from around the nation to share strategies and tactics to work for similar legislation in others states. We saw legislation pass in Texas and have been watching as advocates working in Michigan, Arizona, California and Florida, among other states, seek to follow South Carolina's lead.

Sandee and Jeff Winkelman, Who Argued for Parents' Rights (and Won).
The parents of Jacob Winkelman of Parma, Ohio, fought and won the right for parents across the nation to argue on behalf of their disabled children in federal court. In a 7-2 decision in May, the U.S. Supreme Court ruled that federal special education law grants parents "independent, enforceable rights" separate from their children and therefore they can pursue those rights in court—without a lawyer if necessary—so they can advocate for their child to receive a free and appropriate education. Other parents of autistic children understood the Winkelman's plight: when you have to pay tens of thousands of dollars for autism-related services and schooling, who has the money for a lawyer to fight for services in court? The Supreme Court said they didn't have to be lawyers to fight the good fight.

Senator Hillary Rodham Clinton.
Clinton, the New York Senator who is in a dogfight for the Democratic presidential nomination, this year demonstrated a willingness to be a front-and-center advocate among policy makers in Washington D.C. for people with autism and their families. In March, Clinton and Sen. Wayne Allard, a Colorado Republican, filed legislation that would expand autism services and research. Then this fall, on the campaign trail, Clinton made the loudest call for increased spending on research, education and support services for people with autism, pledging to spend $700 million per year if elected. Yes, it's that time of the political season when we hear lots of promises. And other candidates (only Democrats so far) have noted the need to do something more for people with autism. But no one else has made such pointed, specific proposals for autism. At least not yet.

The Asperger's Association of New England.
It was almost a year ago that a murderous stabbing in a Lincoln-Sudbury High School bathroom in the Boston suburbs shocked the region where I live. It turned out that the 16-year-old who allegedly killed a fellow student has an Asperger's diagnosis, a fact which his lawyer has made central to his defense. The Asperger's Association of New England took it upon itself to invite the public to discuss the diagnosis and assert that physical violence is not at all typical of people with the condition. The group's leaders fielded many media calls and sought to enlighten the public and spread awareness about Asperger's. A footnote to the tragedy: local media have reported the special education program which the Asperger's student attended is no longer hosted at the high school.

Angela Mouzakitis, BCBA.
ABA needs more voices like that of Angela Mouzakitis. Mouzakitis publishes the blog Applied Behavior Analysis: Current Topics, and is a board certified behavior analyst (BCBA) who teaches in the graduate special education program at City University of New York's Queens College. Her essays are always professional, sometimes technical and academic—but throughout she conveys a passion for helping kids on the autism spectrum, for creating new educators who share her passion. Along the way she demonstrates an open-minded approach to practitioners of other kinds of therapies.

Parents and Siblings Who Teach Others About Autism

Karra Barber is the mother of a teenager with Asperger's Syndrome who has brought energy to her advocacy work in California. Her website has a useful list of Asperger's support programs in California, among other resources. A reader writes that she was a leader in the founding of a summer camp for film-making for kids who have trouble communicating at Saint Mary's College in Moraga, Calif.

Morton Ann Gernsbacher, a psychology professor at the University of Wisconsin at Madison and past president of the Association for Psychological Science, has made understanding autism one of her research priorities since her son received an autism spectrum disorder diagnosis. An Autism Bulletin reader notes that Gernsbacher's work to make therapists aware about autism and to battle prejudicial perceptions of people with ASD is essential.

Renee Henderson, a Philadelphia-area mother and advocate, has established a group called Autism Sharing and Parenting, which organizes support groups and parent workshops in Philadelphia and Montgomery Counties in Pennsylvania. A reader writes that Renee, who started the group three years ago, spends many hours helping families make daily picture schedules using Boardmaker, and providing a helpful and supportive ear, and adds: "She is making a difference by teaching parents how to become better advocates for their children, by providing parents with the information, tools and resources needed to improve their quality of life."

Nicholas Lombardi, who is now 12, was in the mall with his younger brother Joey and his mom when Joey took off his shoes and started running. "As the people stared I found my self very angry," Nicholas writes in an essay published on the Autism Speaks website. "Not at him, not really at them, but maybe at autism. I wished there could be a way… to have people understand. A voice." Nicholas decided to create a button for his brother and other autistic kids to wear that says "I'm not misbehaving, I have autism. Please be understanding." Sales of the button in English and Spanish, has raised more than $8,000 so far at Autism Speaks online store.

Recognizing Continued Advocacy Efforts

As noted in the 2006 list of advocates, there are a number of organizations who deserve credit for their ongoing efforts on behalf of people with autism and their families. These include advocacy organizations like the Autism Society of America (which this year announced a partnership with Easter Seals to improve access to services), and Autism Speaks (which merged with Cure Autism Now). Though both groups are large and as such, have their critics and controversies, they are amassing the resources needed to make a national impact.

Others who have continued and expanded their worthy efforts include:

* The center builders, such as The Friends of Children with Special Needs in Fremont, Calif. and the Autism Center of Pittsburgh, an outgrowth of the advocacy and support work at AutismLink.

* Medical researchers. The projects funded by public and private sources, both in the United States and abroad, are aimed at new understanding of autism's potential causes and treatments. See "Large Children's Health Study Cites Autism as One of Key Target Areas" and "British Researchers Unveil Brain Imaging Center" as two examples.

* Educators. This year, Autism Bulletin started an autism schools map project to build a directory for parents seeking options. The map is filling up with examples of organizations committed to helping kids, from the Claremont Autism Center in California to the Connecticut Center for Child Development to the Florida Autism Center for Excellence (FACE) School in Tampa.

Others Worth Noting

* Ivan Corea and others at the National Autistic Society in the United Kingdom, whose advocacy and awareness efforts included a meeting with former Prime Minister Tony Blair.

* Writers who shared their experiences as parents, including Roy Richard Grinker and Portia Iverson. And Tim Page, who wrote movingly of growing up with Asperger's.

* The British author Nick Hornby, who uses his success to sustain the TreeHouse school in London he helped to found, and even from time to time, uses his book reviews in The Believer to spread awareness, though his own experiences, when he writes about autism.

* IEP Advocates like Barbara Ball of Newton, Mass., upon whom parents rely for advice and support.

Thanks to all of these individuals and organizations for their efforts.

Government Panel Seeks Input on Autism Research Priorities

2007-12-28T14:10:00.000-05:00

What should the nation prioritize to advance research on the treatment of autism spectrum disorders (ASD)? On the diagnosis of autism? Risk factors for autism? The biology autism? Or other areas?

The National Institute of Mental Health has issued a request for information to members of the autism community asking for information on what community members believe should be the priorities for autism research.

The deadline for submitting information is January 4, 2008. The Interagency Autism Coordinating Committee established by the Combating Autism Act of 2006 will use the input to develop a strategic plan. The request is aimed at people with autism spectrum disorders, their families, advocates, scientists health professionals, therapists, educators, state and local programs for ASD, and the general public.

You can read the request for information here. An excerpt from the document explains:

The Combating Autism Act of 2006 (Public Law 109-416) re-established the Interagency Autism Coordinating Committee (IACC) and requires that the IACC develop a strategic plan for ASD research. The IACC includes both Federal and public members who are active in the area of ASD research funding, services, or advocacy. In its inaugural meeting on November 30, 2007, the IACC approved a process for developing the strategic plan that includes multiple opportunities for stakeholder input. This RFI is a first step in receiving broad input at the beginning stages of plan development.

To identify research priorities for possible inclusion in the strategic plan for ASD research, the IACC will convene several scientific workshops in January 2008. The responses received through this RFI will be collated, summarized, and provided to workshop participants. The scientific workshops will be organized around four broad areas of ASD research:

Treatment – includes ASD treatment, intervention, and services research that aim to reduce symptoms, promote development, and improve outcomes. This area includes the development and evaluation of medical, behavioral, educational, and complementary interventions for ASD. In addition, this area includes research studies that evaluate the effectiveness of treatments in real world settings, disparities in ASD treatment among specific subpopulations, practice patterns in ASD programs and services, and their cost-effectiveness.
Diagnosis – is concerned with the accurate and valid description of ASD (phenotype) both at the individual and the population level. The public health impact of ASD can be better understood by such studies. In addition, this area concerns itself with the diversity of what constitutes ASD and the characteristics of the condition over the lifespan.
Risk Factors – has to do with investigations of the factors that contribute to the risk of having an ASD in a given person or population. This includes genetic studies of clusters or sporadic occurrences of ASD, studies that focus on environmental factors, e.g., intrauterine events or exposure to toxins, which could lead to ASD, and the interaction between these factors that concentrate risk for ASD.
Biology –studies the underlying biological processes that lead to developmental and medical problems associated with ASD. This includes research in the area of neurosciences but does not confine itself to neurosciences. Therefore, research on other organ systems, interactions between organ systems, and/or other disease processes are included in this area.

The development of the strategic plan is expected to take approximately six months and will include several additional opportunities for public input.

Send your ideas to the Interagency Autism Coordinating Committee at iacc@mail.nih.gov. Please read the guidelines before doing so, such as the need to mark proprietary information and the requested two-page limit for comments.

Also see:

* Advocates, Parents Among Those Appointed to Autism Committee at National Institutes of Health

Autism Speaks Pushes Health Insurance Coverage in Florida, California and Michigan

2007-12-27T14:01:00.000-05:00

Advocacy group Autism Speaks today announced it would work to pass legislation in Florida, California and Michigan to require health insurers to cover autism services such as ABA.

The group's leaders Bob and Suzanne Wright said they plan to meet with Florida Governor Charlie Crist and legislative leaders in what they hope will be a bipartisan effort to pass legislation requiring health insurers to cover autism-related therapies like Applied Behavior Analysis (ABA) "and other structured behavioral therapies, which are the most effective forms of treatment and have the best outcomes, both in human costs and in long-term economic benefits."

"It's time for insurance companies to step up and assume some of the financial burden now shouldered by families and school districts," said Bob Wright. "The autism community is mobilized and determined to go state-by-state state and knock on every legislator's door until these unreasonable insurance laws are changed. It's time to remove these barriers to care."

The announcement cites the fact that so far, Indiana, South Carolina and Texas are the only states which require insurers to cover autism-related services and asserts: "Nationwide, few private insurance companies or other employee benefit plans cover Applied Behavior Analysis and other behavioral therapies. In fact, most insurance companies designate autism as a diagnostic exclusion, meaning that no autism-specific services are covered, even those that would be used to treat other conditions."

As part of this advocacy effort, Autism Speaks posted a paper citing arguments in favor of autism insurance coverage. You can see the PDF document here. It's the same document that advocates in Arizona published on their website. For more on that, see "Arizona Advocates Prepare for Autism Insurance Push."

The choice of these big states is interesting as we enter a presidential election year in which health care is an important issue. So far in the campaign autism has been mentioned briefly, if notably, by Democrat Hillary Clinton. (See "Autism Issue Makes Ripple in Presidential Race.") Autism Bulletin readers responding to an online poll posted Dec. 17 identified autism services as the most important factor in their presidential choice.

It's an election year at the state level, too, and that's where the autism insurance battles will be fought. Autism Speaks said it plans to continue advocating for passage of a bill in Pennsylvania that was pending earlier in 2007 and faced opposition from business lobbyists.

Autism Speaks is one of the nation's biggest autism advocacy groups, and funds research and education initiatives as well as advocacy efforts. It was founded by the Wrights who have an autistic grandson. Bob Wright is the former CEO of NBC.

Also see:

* Michigan to Hold Hearing on Autism Insurance Legislation

New on Autism Bulletin's Sidebar: Special Education and Disability News from PatriciaEBauer.com

2007-12-22T14:23:00.000-05:00

Readers new to Autism Bulletin should check out what I call the "sidebar" which is the column on the right side of this website that has lists and links to other resources. I've added a new one today.

PatriciaEBauer.com is the blog and website providing news and commentary on disability issues authored by Patricia E. Bauer, a veteran journalist and editor. She notes on her website bio that she and her husband helped to establish the Pathway Program at UCLA, a post-secondary program for young adults with intellectual disabilities. They are the parents of two young adults, one of whom has Down syndrome and is a survivor of leukemia.

Note for e-mail subscribers: other resources in the sidebar include autism news via GoogleNews, links to reports and books I have found useful, recent court decisions involving special education law, other resources and some how-to articles such as how to plan a community outing.

After Colorado Arbitrator's Decision, More Information About Lovaas Model of Applied Behavioral Analysis

2007-12-19T22:06:00.000-05:00

Last month, an arbitrator ruled in favor of a Colorado family which fought to have its health insurance company reimburse them for autism-related services for their young daughter—specifically for Applied Behavior Analysis (ABA) sessions which the insurance company denied. The arbitrator ruled that the insurer, Anthem Blue Cross Blue Shield, improperly denied the family's claims for two years worth of services worth about $110,000.

You can read more background in this Autism Bulletin story from December 9: Colorado Family Wins Insurance for Autism Services. One of the points the arbitrator made in her decision was that "Anthem erroneously equates ABA therapy with Lovaas therapy—an approach which has received considerable justifiable scientific criticism. ABA therapy is based upon incidental teaching and pivotal response training, which Dr. Strain testified is the standard of care when dealing with autistic children."

That quote puzzled me because I had read Ole Ivar Lovaas, now a professor emeritus at University of California at Los Angeles, was one of the founders of ABA. So I wrote to the Los Angeles-based Lovaas Institute, which provides autism services using Lovaas' method, and asked them to help me understand more about them and what this arbitrator could have been talking about.

Below is the response I received from Scott Cross, clinical director, and Vincent J. LaMarca, of the institute's human resources department. Both cite their credentials as board-certified behavior analysts, or BCBAs.

On behalf of Dr. Lovaas and the Lovaas Institute, thank you for your inquiry. I can understand from the blog posting why you would have questions about the relationship between “Lovaas therapy” and ABA.

First, you are correct that in laymen’s terms “Lovaas therapy” is “a type of ABA.” In fact, we are more likely to refer to our program as the “Lovaas Model of Applied Behavior Analysis.” We provide behavioral treatment, based on the principles of applied behavior analysis, researched under the direction of Dr. Lovaas, and replicated by other professionals at other sites throughout the world.

Second, the quote from the arbitrator is somewhat curious. On one hand, it states “Lovaas therapy…has received considerable justifiable scientific criticism.” On the other hand, it promotes applied behavior analysis (ABA) by mentioning the Surgeon General report and the National Institute of Mental Health’s publication. This is curious because, after stating, “Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior,” the Surgeon General report’s next sentence states, “A well-designed study of a psychosocial intervention was carried out by Lovaas and colleagues (Lovaas, 1987; McEachin et al., 1993).” The National Institute of Mental Health’s publication also mentions Dr. Lovaas. Immediately after citing the Surgeon General report, it states that the work of Dr. Lovaas “laid a foundation for other educators and researchers.”

It’s possible that what is really meant in the arbitrator’s decision is that Anthem was wrong in making a decision on applied behavior analysis by only consulting studies associated with the Lovaas Model of Applied Behavior Analysis. Applied behavior analysis is a scientific discipline with a wealth of research. While Dr. Lovaas is honored to have contributed to that research, it is but the tip of the iceberg. One need only peruse the Journal of Applied Behavior Analysis to understand why a claim that ABA therapy is “investigational and experimental” is incorrect. There are a multitude of research articles demonstrating the efficacy of applied behavior analysis in teaching new skills to children, adolescents, and adults with autism.
Finally, it is somewhat disconcerting that the testimony, as depicted in the arbitrator’s decision, appears not only to place the Lovaas Model and applied behavior analysis in opposition (as it shouldn’t), but also to downplay some of the Lovaas Model’s treatment procedures in early intervention. It is an enormous oversight that discrete trial teaching (while not the only ABA instructional strategy) is left out of the testimony as an important component of an ABA program. Consider that all of the multi-site replications have been initially discrete trial based and have explicitly stated so in their method sections.

Behavioral treatment for children with autism is currently undergoing a lot of branding, with Verbal Behavior, the Lovaas Model, and Pivotal Response Teaching as the three names used most frequently. To what extent this is helpful or harmful to treatment is an important discussion in which we at the Lovaas Institute are currently taking part with other professionals. We would agree that there is a need for researchers to clarify the similarities and differences of different approaches as well as to study which approaches are more helpful for which children.

In the meantime, I would point out that while the Lovaas Model of Applied Behavior Analysis may have received scientific criticism, the National Academy of Science report (mentioned by Dr. Strain) also states that the Lovaas Model (a.k.a. Young Autism Project) “has generated the most rigorously controlled early intervention research published to date.”

And since that publication in 2001, two replication studies of the Lovaas Model have been published by independent authors, again demonstrating the effectiveness of our approach (Sallows & Graupner, 2005 and Cohen et al., 2006).

Sallows, Glen O. & Graupner, Tamlynn D. (2005). Intensive Behavioral Treatment for Children with Autism: Four-Year Outcome and Predictors. American Journal on Mental Retardation, 110 (6), 417-438.
Cohen, Howard, Amerine-Dickens, Mila, Smith, Tristram. (2006). Early Intensive Behavioral Treatment: Replication of the UCLA Model in a Community Setting. Journal of Developmental & Behavioral Pediatrics, 27 (2), 145-155.

Sincerely,
Scott Cross, PhD, BCBA
Vincent J. LaMarca, BCBA

Where Do Autism Services Fit in Your Views on the Presidential Race?

2007-12-17T21:05:00.000-05:00

With the Iowa caucuses and New Hampshire primary just weeks away, the question came up at a gathering I attended over the weekend: how important is a presidential candidate's stance on autism services to your vote?

The consensus I heard among four voters at the table was that the issue has to be on the candidate's list of action items. Last month, Sen. Hillary Rodham Clinton of New York made autism an issue in her campaign by pledging to fund $700 million per year to expand research, diagnostic efforts and services for both children and adults with autism spectrum disorders. (See "Autism Issue Makes Ripple in Presidential Race as Clinton Promises to Spend $700 Million Per Year." A number of Democrats—Barack Obama, John Edwards, Christopher Dodd and Bill Richardson—mention support for autism services in their record. I couldn't locate any recent notes online for any of the Republican candidates.)

With so much going on in the country and world, it seems difficult at this stage of the presidential race to isolate autism as a campaign issue—even for those of us for whom it is a constant, daily presence. So I'm asking you, Autism Bulletin readers, to weigh in. I've created a poll below, where you can click on your choice for the most important issue. If you don't see your issue listed, you can post your comment below. E-mail subscribers can go here to see the poll.

Arizona Advocates Preparing for Autism Insurance Push; Group Publishes Autism Speaks Report on Coverage Costs, Benefits

2007-12-13T21:19:00.001-05:00

Arizona advocates for health insurance coverage for autism services are planning to hold a rally Tuesday, January 29, 2008, at 6 p.m. in front of the state Capitol building in Phoenix. The event is part of a campaign to get insurance coverage for autism services in the state for children and young adults under age 21.

Advocates have set up a website, AZAutismInsurance.org, as a home page for news and information about the effort. In addition to keeping Arizona advocates up to date, the group's website hosts an important document that advocates around the country could find useful.

The 23-page document, "Arguments in Support of Private Insurance Coverage of Autism-Related Services," prepared by the national advocacy group Autism Speaks in October, lays out in clear language eight reasons why a state like Arizona should pass laws that mandate insurance coverage of autism services.

The report includes cost estimates based on studies in other states—a few dollars a month added to the average health insurance policy—and benefits: access to services now out of reach of many affected children. The report explains how existing services and government programs, including Medicaid, fall short of what's needed for a growing population of those diagnosed with autism spectrum disorders. And it brings up an argument heard before: it pays to provide services to children, to help them grow and develop, so that it costs less to provide supports later in life.

The following is a rundown of the arguments, excerpted from the beginning of the report:

Argument 1: Mandated private health insurance coverage will provide services that are desperately needed by children with autism, who have greater health care needs than children without autism.

Argument 2: Treatments for autism are difficult to access, often inadequate, and frequently delayed. Denied coverage by private group health insurance companies, parents are often forced either to pay out-of-pocket or forego the treatments their children need.

Argument 3: Mandated private insurance coverage will bring effective autism services within the reach of children who need them. The efficacy of Applied Behavior Analysis (ABA), the centerpiece of this legislative mandate’s benefits, has been established repeatedly.

Argument 4: Government and scientific organizations have endorsed Applied Behavior Analysis (ABA) and other structured behavioral therapies.

Argument 5: To combat the difficulty many families face in accessing Applied Behavior Analysis (ABA) and other structured behavioral treatments through public insurance, three states have passed autism insurance mandates that specifically require private insurance companies to provide coverage of these therapies, thus creating a public-private partnership for the provision of care.

Argument 6: The costs of this insurance reform are small and will have very little impact on the cost of health insurance premiums for the individual consumer.

Argument 7: By improving outcomes for children with autism, mandated private insurance coverage will decrease the lifetime costs of treating and providing services and will actually result in an overall cost savings in the long-run.

Argument 8: Without passage of legislation requiring private health insurance coverage for autism, the costs associated with autism will continue not only to affect families, but will have far reaching social effects as well.

It will be interesting to see how the discussion plays out in Phoenix. A cursory check of the Arizona State Legislature's website indicates that there are no current bills filed relating to autism yet; I will look to update readers when I learn more information.

Also see from Autism Bulletin's archives:

* Michigan to Hold Hearing on Autism Insurance Legislation

* Articles related to health insurance

Michigan to Hold Hearing on Autism Insurance Legislation

2007-12-12T21:15:00.001-05:00

Michigan State Rep. Kathy Angerer, a Democrat from Dundee who chairs the House Health Policy Committee, has filed two bills that would require health insurance companies to cover diagnosis and treatment for autism spectrum disorders. Angerer's House panel is scheduled to hold a hearing on the measures, Dec. 13 at 9 a.m. in Room 519 of the House Office Building in Lansing. Thanks to the bloggers at Autism Insurance in Michigan for passing along word of this hearing and links to the legislation.

The wording of the legislation is below; what's interesting to note is the specific items covered—speech, OT, ABA, PT and early intervention services. The bill does not mention age restrictions as in states like South Carolina and Texas.

"More and more children across our state are being diagnosed with autism, leaving an increasing number of Michigan families struggling to keep up with the high costs of treatment," Angerer said in a statement. "Proper screening and treatment of autism is crucial to a child's development, and experts agree that early diagnosis and treatment is vital to increasing the chances that a child will reach their full potential. Excluding autism from coverage is not only arbitrary and unfair – it sets back efforts to understand and treat this disorder, which threatens to increase health care costs for everyone down the road."

Angerer is the lead sponsor of two house bills, No. 5529 and No. 5527, each of which calls for coverage of autism-related services. The bills have parallel Senate versions (Nos. 784 and 785) sponsored by Sen. Tupac Hunter, a Detroit Democrat (again, noted by Autism Insurance in Michigan.)

Language in the Michigan Bills

Here's specifics on what the House bills cover. Bill No. 5529 states that authorized hospitals, medical facilities, health maintenance plans:

shall provide coverage for the treatment of autism spectrum disorder, including, but not limited to, coverage for therapeutic evaluations and interventions, speech therapy, intensive early intervention, applied behavioral analysis, and Lovaas behavioral therapy.

Coverage for autism spectrum disorder under this section is subject to the same terms and conditions that the insurer or health maintenance organization applies to the treatment of other disorders. However, an insurer or health maintenance organization may confirm a diagnosis or review the appropriateness of a specific treatment plan in order to insure that coverage under this section is limited to diagnostic and treatment services.

As used in this section, "autism spectrum disorder" means a neurobiological condition that includes autism Asperger Syndrome and Rett's Syndrome.

The other bill, No. 5527 has the exact same wording regarding coverage of services, and what autism means, except it applies to "a health care corporation group or nongroup"; in other words, other kinds of health insurance organizations and health care organizations.

Also see in Autism Bulletin archives:

* Past coverage of health insurance

Also, an updated version of the Autism Insurance Map is below (e-mail subscribers, click here if you have trouble seeing it):

Colorado Family Wins Insurance for Autism Services

2007-12-09T20:48:00.000-05:00

An arbitrator in a Colorado family's dispute over whether Applied Behavior Analysis (ABA) therapy is covered under a health insurance plan has ruled in favor of the family seeking reimbursement for about $110,000 over two years of therapy.

Autism services advocates are hailing the decision in the case of Jill and Stephen Tappert who appealed several coverage denials for ABA services for their young daughter Abby by Anthem Blue Cross Blue Shield of Denver, as an important victory.

But a spokeswoman for Anthem told Denver ABC TV affiliate KMGH Channel 7 the insurance company believed Tappert case was a single instance and was not precedent-setting: "This decision is not a broad-based declaration that ABA therapy is 'medically necessary' in all cases. To what extent this type of therapy should be covered...should be made by legislators and/or the division of insurance."

It's not surprising for the insurer to assert a narrow reading of the case. However, families around the country could study the arbitrator's decision which clearly states that ABA is a mainstream, research-based approach for early intervention services for young children with an autism spectrum disorder diagnosis—and rejecting the insurer's arguments that it's not an effective medical treatment.

The case also raises questions for other insurance companies and whether they could use this decision to revise their coverage policies or the administrative rules that govern them.

One thing the Anthem spokeswoman hit upon was a legislative trend. The question about health insurance coverage for autism services such as ABA has, in fact, been a theme of legislative debates around the country as the issue makes its way through state-level debates. Reading different bills, some legislators leave the wording vague as to what health insurers should cover; new laws have passed in South Carolina, which calls for coverage of behavioral therapy, and Texas which calls for coverage of ABA. (Insurance industry and business industry lobbyists, meanwhile, have argued against any additional coverage because of the cost, in states like Pennsylvania.)

The Arbitrator's Findings

The arbitrator's decision document (dated Nov. 20 and issued by Judicial Arbiter Group) which Autism Bulletin received from advocates, provides a window into the health insurance company's policy on autism coverage. Anthem rejected coverage on the grounds that ABA services were not provided in a doctor's office, that ABA was not a medically valid treatment.

Some of Anthem's testimony appears to have been undercut by the fact that administrators and doctors with no experience treating autism cases were making decisions about whether ABA should be covered. Even so, the arbitrator's decision rejects Anthem's arguments and cites the testimony of Philip Strain, an early intervention autism expert and professor of educational psychology at University of Colorado at Denver states:

In his criticism of the Anthem policy, Dr. Strain points out that Anthem erroneously equates ABA therapy with Lovaas therapy—an approach which has received considerable justifiable scientific criticism. ABA therapy is based upon incidental teaching and pivotal response training, which Dr. Strain testified is the standard of care when dealing with autistic children.

According to Dr. Strain, instead of being investigational and experimental, ABA therapy reduces problem behaviors 80 to 90 percent and studies have replicated these results repeatedly.

Finally, Dr. Strain testified that the ABA therapy received by Abby was endorsed by the National Academy of Sciences—the recognized authority in the United States for resolving scientific disputes. Dr. Strain's opinions were echoed b Dr. Huckabee, Abby's treater for autism. Both Dr. Strain's and Huckabee's opinions are supported by the National Institute of Mental Health's publication on Autism Spectrum Disorders: "Among the many methods available for treatment and education of people with autism, applied behavior analysis (ABA) has become widely accepted as an effective treatment. Mental Health: A Report of the Surgeon General states: 'Thirty years of research demonstrated the efficiency of applied behavior methods in reducing inappropriate behavior and increasing social behavior.'"

Remember the American Academy of Pediatrics

The arbitrator's decision in this Colorado also case points out the importance of the recently launched autism awareness campaign at the American Academy of Pediatrics. The full-on effort to educate pediatricians about autism and early interventions to address the condition is likely to lead to more medical prescriptions for therapies such as ABA for young children who are diagnosed with autism spectrum disorders. It will also make it more difficult for health insurers to pledge ignorance about the legitimacy of such approaches.

Also see in the Autism Bulletin archives:

American Pediatricians Make Big Push for Autism Diagnosis, Awareness; Kits for Doctors, Checklists for Parents

Questions and Answers About the Florida Autism Center of Excellence in Tampa

2007-12-06T21:48:00.000-05:00

The Florida Autism Center of Excellence (FACE), which opened August 20 in Tampa, Florida, to serve children with autism spectrum disorders, represents an interesting model for a new school. There's been a great deal of interest among Autism Bulletin readers in how the school is set up to help kids and their parents, and below I am publishing the transcript of an e-mail question-and-answer session with representatives of the school about the FACE program.

First, a bit of background. About one year ago, FACE received seed money ($700,000) from the state of Florida to cover starting costs. Students at the school are eligible for partial tuition grants from a state government "school choice" program for children with disabilities. The school is pursuing a program based on the principles of Applied Behavior Analysis (ABA), which means staff seek to manage the behaviors of children to help them learn, to encourage positive behaviors that lead to growth and development and to discourage behaviors that are obstacles to learning.

In addition, the for-profit Educational Services of America, based in Nashville, is responsible for managing the nonprofit FACE school. With such a model, with a rising demand nationally for autism services and educational programs, it's no wonder that there has been a great deal of interest among Autism Bulletin readers in the school, and the specifics of how it's set up. What follows below is the full text of questions I had, plus those collected from readers, and the answers which the school administration sent on November 29 through Lovell Communications, Educational Services of America's public relations agency.

What kind of training do teachers receive?

Our teachers receive specific, extensive training that begins before they enter the classroom and continues throughout the school year. Topics include Applied Behavior Analysis and specific methodologies for working with students with autism, such as discrete trial, structured teaching, social skill training and other tools to develop individual education and behavior support plans.

Our school calendar requires an additional 150 hours of formal training, which is supplemented by ongoing coaching and support from the clinical program director and from teachers who mentor their colleagues. Teachers are trained to conduct individual assessments, write lesson plans and collect and analyze data so they can make objective determinations about whether a student is advancing academically, behaviorally and socially. In addition, teachers are required to obtain an Autism Endorsement from an accredited university.

What kind of training do one-on-one aides receive?

We staff classrooms to provide the greatest amount of support to promote students’ independence, enhance generalization and encourage relationships with their peers and, therefore, we do not provide one-on-one aides. However, all aides receive the same extensive, specific training the teachers receive.

What direct supervision do teachers and aides receive -- how often, how much time per week and from whom?

Teachers and aides receive a high degree of support and supervision. Several teachers serve as mentors to their colleagues and the mentors hold weekly supervision meetings with classroom teachers to provide ongoing training, support and guidance. The clinical program director meets with each mentor teacher weekly. And the clinical director/behavior specialist and school director review each teacher’s weekly lesson plan. Assistants receive formal supervision from the classroom teachers once a week and on-the-job coaching, support and training all day every day.

What kind of certification of education and training do you require of staff?

Our teachers are required to meet all state standards plus the standards of the Florida Autism Center of Excellence. Our school calendar requires an additional 150 hours of formal training, which is supplemented by ongoing coaching and support every day. In addition, teachers are required to obtain an Autism Endorsement from an accredited university.

How many staff members have advanced training in applied behavior analysis (ABA)?

Educational Services of America, the company FACE hired to manage the school, has seven qualified board certified behavior analysts, including two who provide support and supervision to FACE and conduct on-site training for FACE teachers. The FACE clinical program director earned her master's degree in Applied Behavior Analysis from the University of South Florida and sat for the certification exam in November. The principles of ABA are the very foundation of what we do. For example, our lesson plans include ABA components such as the instruction (discriminative stimulus), the prompt level, the correction and reinforcement plan.

Who is responsible for individual behavior plans for students? If an aide has a problem, where does she go for help?

The teacher, the mentor teacher and the clinical program director work collaboratively to develop students’ individual positive behavior intervention plans. If an aide has a problem, he or she goes first to the classroom teacher, then to the mentor teacher, then to the program director.

How often does your staff visit with students at home to generalize lessons from school, and work on home-based skills?

Our mission is to educate students in a school environment. Therefore, our staff does not go to students’ homes – rather, we communicate with every parent every day and we invite parents to schedule visits to FACE. In addition, we will soon offer parents additional support they can use at home. Our plan called for us to open FACE in Fall 2007 and offer parent and family initiatives such as training, support groups and a parent-teacher association in Spring 2008 – and we’re on track to do that.

What kind of training and education do supervisors have?

One supervisor has a bachelor’s degree in special education, a master’s degree in ABA and sat for the certification exam in November. Another has a bachelor’s degree in business management, a master’s in education and is working toward a doctoral degree in educational leadership. Our lead teachers each have bachelor’s degrees in psychology and seven years of experience working with children with autism. One of our lead teachers has a certification in Exceptional Student Education for students in grades K-12. The executive director of FACE has a bachelor’s degree in social science, a master’s in mental health counseling and is completing a doctoral program in adolescent counseling. He is a board-certified professional counselor and a licensed mental health counselor whose specialty is children and adolescents.

How many board certified behavior analysts does FACE employ on site?

ESA has three board-certified behavior analysts, including two who provide direct, ongoing support to FACE and are frequently on campus. The clinical program director, whose office is on campus, has a master’s degree in ABA and sat for the certification exam this month.

What is the student-teacher ratio?

We individualize our curriculum and behavior intervention plans for each student, so our student-teacher ratio is based on students’ needs. There is one teacher and one aide for every eight children at the FACE Dale Mabry campus, whose students require more intensive interventions. There is one teacher and one aide for every 15 students at the FACE Chelsea campus, whose students require less intensive interventions.

How many students have a one-on-one aide, compared to the total enrollment?

We staff classrooms to provide the greatest amount of support to promote independence, enhance generalization and encourage relationships with peers and, therefore, we do not have one-on-one aides.

The autism spectrum can present as a broad array of needs, from severe communications challenges, to highly verbal children who have a diagnosis of Asperger's Syndrome. Do you serve them all? How?

Our mission is to provide a continuum of education and behavioral services to students anywhere on the spectrum. We do this by providing individualized curriculum and behavior intervention plans to meet the specific needs of each student. Students at our Dale Mabry campus require more intensive interventions; students at our Chelsea campus require less intensive interventions. Class sizes are small and students are grouped by according to their age and then by their level of ability. Our small class size, low student-teacher ratio, highly individualized instruction and two campuses enable us to serve students no matter where they are on the spectrum.

What kind of parent training do you offer? What do you do to help parents learn about ABA?

We will begin offering parents structured training and support soon. Since FACE opened in the Fall of 2007, we have worked closely with our parents and shared our methodologies and philosophies with them. Our plan called for us to open FACE in Fall 2007 and offer parent and family initiatives such as training, and network and support groups in Spring 2008 – and we’re on track to do that. We can help parents learn about many aspects of ABA, such as positive behavior management, that will help parents and students in their daily lives at home.

What other services are available for families from the school?

FACE has partnered with the Boys and Girls Club of Tampa, in part due to a federal grant to establish after school programs for children with special needs. The goal is to provide a comprehensive after school program integrating children at all levels of functioning with a comprehensive academic, social and physical program model. As part of the program, FACE students are teamed with typically developing students from other schools who serve as mentors one day a week. This provides FACE students an opportunity to interact and develop friendships with students who attend other schools.

Do you offer any social worker support from the school?

Through our partnership with the Hillsborough County School District, every student and family has access to social work support.

What do you say to those who are skeptical that a for-profit parent company can run an effective non-profit organization like FACE? How do you balance the need to maximize revenues, minimize costs and still provide a quality program?

Our mission is to help students with special needs develop academic, behavioral and social skills that will enable them to lead more independent lives. Being a for-profit organization allows us to do this effectively, efficiently and with a high level of quality. Organizations, whether they are non-profit or for-profit, have many of the same fiscal realities – they have income and they have expenses. But there are some important differences. Because we do not have to raise money through charitable donations, we have the resources to focus strictly on helping children. We also feel tremendous accountability. We remain in business because our programs are successful and our families are happy with the results their children achieve.

Editor's Note

As always, you are welcome to leave comments about this exchange with the FACE school. No doubt the FACE administration will see them. In addition, I want to publicly thank the school's administrators for participating in this Q&A.

For more background, also see from Autism Bulletin's archives:

New Florida Autism Charter School Opens in Tampa

Florida Awards $700,000 Grant to Start Tampa Autism Center

Autism Schools Map Project

Advocates, Parents Among Those Appointed to Autism Committee at National Institutes of Health

2007-12-02T10:01:00.000-05:00

One theme of the Combating Autism Act of 2006 was to do more to coordinate federal government efforts on autism research and diagnostic screening along with autism services and education programs. Following this directive, Mike Leavitt, the Bush Administration's secretary of Health and Human Services, on Nov. 27 announced 19 appointments to the government's Interagency Autism Coordinating Committee.

The committee's goal is to make sure government agencies are sharing information so they can coordinate their respective efforts on various autism-related programs. You can read Leavitt's full announcement by clicking here.

While the law calls for the director of the Centers for Disease Control to be appointed to this panel, Leavitt instead appointed another CDC official to represent the agency head, Julie Gerberding. (You can read the text of the Combating Autism Act here in a PDF file. For those of you interested in the specific section of the law pertaining to this committee, read to the end of this post.)

The committee chair is Thomas R. Insel, M.D., director of National Institutes for Mental Health. "The committee's first priority will be to develop a strategic plan for autism research that can guide public and private investments to make the greatest difference for families struggling with autism," Dr. Insel said in a statement.

Four Parents, One Autistic Adult Appointed to the Committee

The law calls for the committee to have one-third of its members come from the public at large, and at least one person with autism, one parent and one member of the autism advocacy organization. Levitt's six choices to fill these roles are below, with notes from the government's press release and some associated website links:

Stephen Shore, Ed.D., the executive director of Autism Spectrum Disorder Consulting. See his website at www.autismasperger.net. Shore has an autism spectrum disorder diagnosis. He is an education consultant who is an expert "on adult issues pertinent to education, relationships, employment, advocacy, and disclosure." Shore serves on the board of the Autism Society of America, as board president of the Asperger's Association of New England, and is on the board of directors for Unlocking Autism, the Autism Services Association of Massachusetts, MAAP Services, The College Internship Program, and the KEEN Foundation.

Parent Lee Grossman, the president and CEO of Autism Society of America (ASA), a leading advocacy organization based near Washington D.C. He is the parent of a young adult son with autism. Mr. Grossman is also the chair of the ASA Foundation and a member of the ASA Environmental Health Advisory Board.

Parent Christine McKee is a lawyer who has developed and manages an in-home therapy for her autistic child. She participates in monthly consultations with a Board Certified Behavior Analyst/Speech Pathologist. She applies the therapeutic measures in her daily parenting and childcare routines.

Parent Lyn Redwood is co-founder and president of the advocacy group Coalition for Safe Minds. The coalition is a private nonprofit organization "founded to investigate and raise awareness of the risks to infants and children of exposure to mercury from medical products, including thimerosal in vaccines." She is a nurse practitioner who has 25 years of experience, and began her advocacy efforts for autism research after her son was diagnosed with pervasive development disorder in 1999."

Parent and sibling Alison Tepper Singer is executive vice president of Autism Speaks and is a member of the board of directors. Prior to joining Autism Speaks, Ms. Singer spent 14 years at CNBC and NBC where she served in several positions. She has both a daughter and an older brother with autism, giving her long-term, personal experience with the disorder.

Yvette Janvier, M.D., is the medical director for Children's Specialized Hospital in New Jersey. Dr. Janvier is also a clinical assistant professor in the Department of Pediatrics, Robert Wood Johnson Medical School. Her specialties are autism and developmental and behavioral
pediatrics. Dr. Janvier is a fellow of the American Academy of Pediatrics.

Government Officials on Committee

Secretary Leavitt appointed 13 government officials and researchers to this committee. They are:

Duane Alexander, M.D., director of the National Institute of Child Health and Human Development at NIH. The Institute supports research on all stages of human development, from preconception to adulthood, to better understand the health of children, adults, families, and communities.

James Battey, M.D., is director of the National Institute on Deafness and Other Communications Disorders at NIH. The Institute supports biomedical and behavioral research and research training in the normal and disordered processes of hearing, balance, smell, taste, voice, speech, and language.

Ellen Blackwell is a social worker and health insurance specialist of the Division of Community and Institutional Services, Disabled and Elderly Health Programs Group, Center for Medicaid and State Operations, Centers for Medicare and Medicaid Services where she serves as an expert on policies that affect individuals with autism spectrum disorders.

Margaret Giannini, M.D., is director of the HHS Office on Disability. Dr. Giannini serves as advisor to the Secretary on HHS activities relating to disabilities. She is also a member of the Institute of Medicine of the National Academy of Sciences and fellow of the American Academy of Pediatrics.

Gail Houle, is associate division director of the Research-to-Practice Division, Early Childhood Programs, Office of Special Education Programs, Department of Education where she oversees programs for children with disabilities and their families funded through the Individual with Disabilities Education Act. Her expertise focuses on services for children with autism spectrum disorders.

Larke Huang is senior advisor on children and a licensed clinical-community psychologist who provides leadership on federal national policy pertaining to mental health and substance use issues for children, adolescents and families for the Substance Abuse and Mental Health Services Administration.

Thomas Insel, M.D., is director of the National Institute of Mental Health at NIH. The Institute's mission is to reduce the burden of mental illness and behavioral disorders through research on mind, brain, and behavior.

Story Landis is director of the National Institute of Neurological Disorders and Stroke at NIH. The Institute's focus is directed toward reducing the burden of neurological disease through research on the normal and diseased nervous system.

Cindy Lawler is scientific program director of the Cellular, Organs, and Systems Pathobiology Branch, Division of Extramural Research and Training, National Institute of Environmental Health Sciences at NIH. The Branch plans, directs, and evaluates the Institute's grant program that supports research and research training in environmental health.

Patricia Morrissey is commissioner of the Administration on Developmental Disabilities at the Administration for Children and Families, which seeks to improve services to and assure that individuals with developmental disabilities have opportunities to make their own choices, contribute to society, have supports to live independently, and are free of abuse, neglect, financial and sexual exploitation, and violations of their legal and human rights.

Edwin Trevathan, M.D., is director of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at CDC. NCBDDD is focused on identifying the causes of and preventing birth defects and developmental disabilities, helping children to develop and reach their full potential, and promoting health and well-being among people of all ages with disabilities. Dr. Trevathan is representing Julie Gerberding, M.D., M.P.H., director of the CDC, on the committee.

Peter van Dyck, M.D., M.P.H., is associate administrator of Maternal and Child Health at the Health Resources and Services Administration (HRSA). Dr. van Dyck oversees HRSA's Maternal and Child Health Bureau, which seeks to improve the health of mothers, children, and families, particularly those who are poor or lack access to care.

Elias Zerhouni, M.D., is director of the National Institutes of Health. A world renowned leader in the field of radiology and medicine, Dr. Zerhouni has spent his career providing clinical, scientific, and administrative leadership. He leads the nation's medical research agency and oversees the NIH's 27 Institutes and Centers with more than 18,000 employees.

Notes on This Panel from the Combating Autism Act

The law calls for the committee to meet at least twice a year, in public. Here's what the law says about its goals:

In carrying out its duties under this section, the Committee shall—

(1) develop and annually update a summary of advances in autism spectrum disorder research related to causes, prevention, treatment, early screening, diagnosis or rule out, intervention, and access to services and supports for individuals with autism spectrum disorder;

(2) monitor Federal activities with respect to autism spectrum disorder;

(3) make recommendations to the Secretary regarding any appropriate changes to such activities, including recommendations to the Director of NIH with respect to the strategic plan developed under paragraph (5);

(4) make recommendations to the Secretary regarding public participation in decisions relating to autism spectrum disorder;

(5) develop and annually update a strategic plan for the conduct of, and support for, autism spectrum disorder research, including proposed budgetary requirements; and

(6) submit to the Congress such strategic plan and any updates to such plan.

Autism Issue Makes Ripple in Presidential Race As Clinton Promises to Spend $700 Million Per Year

2007-11-27T21:25:00.000-05:00

Sen. Hillary Clinton of New York, a front-runner in the race for the Democratic presidential nomination, last week issued a plan to help children and families affected by autism. The plan calls for spending $700 million per year to expand research, identify treatments, expand access to services for children and adults with autism spectrum disorders and provide autism-specific training for teachers.

While some other candidates do address autism in their campaign literature and remarks (read on below), Clinton's proposal is the most detailed of any of the major presidential candidates I could find, and follows her filing a bill in March 2007 with Republican Senator Wayne Allard of Colorado to increase access to support services for Americans with autism. (See "Senators Clinton and Allard Unveil Proposal to Expand Autism Services," in the Autism Bulletin archives.)

You can read a press release about Clinton's plan here. Both the Clinton-Allard bill and this plan—issued during this white-hot period leading up to the Iowa causes and New Hampshire primary in early January—include similar ideas around the same broad themes: expanding access to autism services for people who need them, from children to adults; spending more to understand what happens when someone has autism and why diagnoses are on the rise; generating more consensus around evidence-based effective treatments for autism.

Notably, Clinton calls for providing grants to states to increase programs and services for adults.

What Other Candidates Are Saying About Autism

A number of candidates who serve in Congress have records on autism that relate to the landmark 2006 passage of the Combating Autism Act, which received broad support. In fact, Sen. Christopher Dodd, a Connecticut Democrat, was the co-sponsor of the Senate version of the bill. You can read more about his work on that law here and see more coverage of that landmark law here.

Dodd and other Democratic candidates including John Edwards, the former North Carolina Senator and vice presidential candidate; Sen. Barack Obama, Democrat of Illinois, and New Mexico Gov. Bill Richardson, include their ideas about helping people with autism in their health care reform plans. Some quotes follow:

From the John Edwards campaign blog, Nov. 26:

We need to find the causes so we can help protect our children. The National Institutes of Health have concluded that childhood vaccines are not the cause, but many families are not convinced. As president, I will double funding for autism research, issue an all-hands-on deck challenge and follow the results wherever the science takes us.

We also need to take better care of children affected today. My plan for universal health care, guaranteed coverage of autism care in Medicaid and private insurance, and better investments in special education and home health workers will assist families to support and treat children with autism and help children, and adults, reach their full potential.

We should also invest more in recruiting, training and paying sufficiently teachers, therapists, psychologists and others working in the special education field. It's time to finally get on a path to fully funding special education.

From the Barack Obama campaign's health care plan:

Support Americans with Autism. More than one million Americans have autism, a complex neurobiological condition that has a range of impacts on thinking, feeling, language, and the ability to relate to others. As diagnostic criteria broaden and awareness increases, more cases of autism have been recognized across the country. Barack Obama believes that we can do more to help autistic Americans and their families understand and live with autism. He has been a strong supporter of more than $1 billion in federal funding for autism research on the root causes and treatments, and he believes that we should increase funding for the Individuals with Disabilities Education Act to truly ensure that no child is left behind.

More than anything, autism remains a profound mystery with a broad spectrum of effects on autistic individuals, their families, loved ones, the community, and education and health care systems. Obama believes that the government and our communities should work together to provide a helping hand to autistic individuals and their families.

From Bill Richardson's health care proposal:

First of all I am for strongly increased research on autism. The number of children in this country affected by autism is just staggering. [1 in every 150 children] Comprehensive and universal access to health care is part of the solution. I fought for increased funding in New Mexico for outreach, education, treatment and awareness. This is something that I have been talking about on the campaign trail everyday and it will be a priority in my administration.

From Christopher Dodd's health care plan:

Under the Dodd Plan, every child in America will have guaranteed health insurance equivalent to the health coverage Members of Congress have for their children. All children will have access to preventive health screenings including vision, hearing, autism, and other neurological disorders.

Where Are The Republicans?

I researched the online campaign literature and recent press coverage for Mike Huckabee, the former Arkansas governor; Sen. John McCain of Arizona, Rep. Ron Paul of Texas, and former Massachusetts Gov. Mitt Romney. With the exception of a haircut fundraiser that Huckabee attended for autism in New Hampshire, and a Romney campaign volunteer in Colorado who has done some charity work for autism, I couldn't find a mention of autism anywhere.

That doesn't mean it's not there, so if you know of someone in any of these campaigns, write to me or submit a comment at the end of this post. It could just mean that autism hasn't risen to any level of importance in the Republican race. Health care is present, though. Mitt Romney is running on his bringing health coverage to all in Massachusetts. Ron Paul is a doctor. In the past, Mike Huckabee has been on a mission to make citizens lose weight.

Noted: I couldn't find anything on the websites of two other Democrats, Sen. Joe Biden of Delaware and Rep. Dennis Kucinich of Ohio.

Haircut Footnote

Four candidates have taken up a "$400 haircut challenge" for charity, from the father of an autistic child in New Hampshire. Here's an item from the Autism Society of America's website:

Representative Dennis Kucinich made a campaign stop for autism on November 20. The presidential candidate, a democrat from Ohio, was the third politician to take up New Hampshire hair stylist David Holden on his challenge to get a $400 haircut with all proceeds going to ASA.

Though the challenge was inspired by candidate John Edwards’ high-end haircuts that appeared on campaign statements in April, Holden said the challenge isn’t meant as a dig just an opportunity to help a good cause. Holden is the owner of Hair Biz salon in Concord, and the father of a 12-year-old with autism.

Kucinich is the third to take up the challenge. Representative Tom Tancredo of Colorado and former Arkansas governor Mike Huckabee have also participated.

Also see:

Bush Vetoes Domestic Spending Bill That Includes Autism Research, Education Funds

Film Review: Three Reasons to See "Autism: The Musical"

2007-11-24T20:45:00.000-05:00

Written by Carol Gerwin

If you have a chance to see "Autism: The Musical," the documentary directed by Tricia Regan that chronicles the debut of a Los Angeles theater group for children with autism, you should grab it. Even if it means going by yourself (as I did on Thanksgiving night) because your spouse has to stay home with the kids. Here are three reasons I'm glad I did:

1) The film is a moving and nuanced depiction of the huge range of kids who fall onto the autism spectrum and the challenging reality of their daily lives.

Among the participants who write, plan and produce a full-length musical in five months are Lexi, a 14-year-old with a beautifully sweet singing voice who constantly repeats questions people ask her but has trouble coming up with answers; Henry, an extremely talkative 10-year-old with encyclopedic recall of reptile facts whose awkward behavior puts off peers; and Neal, a nonverbal 12-year-old who sometimes acts out aggressively when feeling anxious.

The movie shows the kids at school, at home, and in chaotic rehearsals that eventually lead to a well-orchestrated and emotional opening night. In one remarkable moment, an often ebullient boy named Wyatt describes his frustration with theater group friends who withdraw from others and then suddenly realizes that he sometimes does the same thing, asking, "Why do I go into my own world?"

2) The movie demonstrates the life-changing impact that having a child with autism has on parents—for better and for worse.

Neal's mother, Elaine, started the theater group she named "The Miracle Project" after discovering that music and movement were effective ways to engage her son. Divorced after several years of Neal's sleepless nights and frequent tantrums, Elaine later finds a new love who embraces her son. During the filming, one couple bickers, one separates and another despairs that they can't afford an expensive legal battle to get appropriate educational services for their child. They all struggle to understand their kids and help them lead fulfilling lives—and they worry intensely about what will happen to them after they themselves die. As Lexi's mother, who has suffered from depression but beams through her tears on opening night, says: "Living with her has had a profound effect on who I've become."

3) The film illustrates both the tremendous potential of kids with autism and the relentless nature of the disorder.

In the end, The Miracle Project's musical really was no miracle at all. No one was cured; no one's life was transformed. (Be sure to stay for the biographical end notes, which drive home the point that the ongoing challenges these kids face certainly will continue.) But the experience had value for everyone involved. These kids showed themselves and their community how much they can accomplish when people take the time to accept them for who they are, celebrate their strengths and devote resources to help them overcome (or at least compensate for) their weaknesses. As the kids sing in the musical's opening song, "Take a chance. Get to know the real me." The real miracle would be for this to happen all the time.

Background notes: "Autism: The Musical" has been showing at film festivals across North America and has picked up two audience awards so far. HBO will show the movie in April and it will be out on DVD after that. (For Autism Bulletin's Boston-area readers, the documentary is playing through Nov. 29 at the Coolidge Corner Theatre in Brookline, Mass. Then it's on to Anchorage, Alaska for a film festival screening December 3. Check the film's website for more updates.)

Carol Gerwin is a Boston-based editor and writer who is married to Autism Bulletin blogger Michael Goldberg.

Autism Bulletin Featured on AutismPodcast.org

2007-11-20T23:02:00.000-05:00

Usually at Autism Bulletin, there's an effort to share answers and insights for parents of kids with autism spectrum disorders. So it was an interesting experience to be a guest on Michael Boll's Autismpodcast.org to talk about my work on this blog and also about being the parent of a young child on the spectrum.

You can find the recording of the conversation by clicking here.

Michael Boll is a teacher by training and, like many Autism Bulletin readers, he found himself thrust into this role of having to learn all about autism spectrum disorders, what to do about it to help his son and family, all the while carrying on with other parts of his life.

If you are new to Autismpodcast, the website hosts 61 episodes and counting. They include talks with Andy Bondi and Lori Frost, the founders of the Picture Exchange Communication System (PECS), Steven Gutstein, founder of Relational Development Intervention (RDI) and Alex Plank, creator of wrongplanet.net, an online resource for people with Asperger's.

Additions to Autism Bulletin Resources

2007-11-15T22:46:00.001-05:00

Readers who are new to Autism Bulletin can find links to court decisions, research papers, historical and government documents and other websites to help learn more about autism spectrum disorders. I have added links to two papers from the American Academy of Pediatrics that could have an influence on the lives of many children with autism in the United States. The papers are:

* Management of Children With Autism Spectrum Disorders, by Scott Myers, M.D., in the journal Pediatrics, Nov. 2007.

* Identification and Evaluation of Children With Autism Spectrum Disorders, by Chris Plauche´ Johnson, M.D., Scott M. Myers, MD, and the Council on Children With Disabilities. Also in the November 2007 issue of Pediatrics.

Find these and other resources in the Autism Bulletin sidebar, which is the column to the right of articles that appear on this blog.

Also see:

American Pediatricians Make Big Push for Autism Diagnosis, Awareness; Kits for Doctors, Checklists for Parents

Bush Vetoes Domestic Spending Bill That Includes Autism Research, Education Funds

2007-11-13T20:47:00.000-05:00

President Bush today vetoed a bill that autism advocates say would have increased funding for autism research, data collection on autism diagnosis studies, and provided more awareness and training for professionals working with autistic students. Some autism advocates are calling on Congress to override the president's veto.

The money involved—$1 million at the National Institutes of Health for research, $16.5 million at the Centers for Disease Control for the population studies, and another $37 million for awareness programs—is a relative pittance when compared with the billions of dollars in disagreements you're about to read in the quotes from government leaders that follow. It demonstrates how difficult it can be to get federal funds appropriated for a cause that just a year ago enjoyed wide bipartisan support, when Bush signed the Combating Autism Act into law.

These autism-related items are part of a much larger spending bill that also pertains to education, health and anti-poverty programs.

Partisan Bickering—and the Iraq War

Bush issued a statement saying the domestic spending proposal from Congress, called the Labor, Health and Human Services and Education Conference Report, costs too much and contains too many "earmarks," spending provisions for projects in local Congressional districts. The president's statement said: "This year, the Congress plans to overspend my budget by $22 billion, of which $10 billion is for increases in this bill. Health care, education, job training, and other goals can be achieved without this excessive spending if the Congress sets priorities."

Leaders of the appropriations committees in the House and Senate, both Democrats, sought to point out the relative low cost of the programs designed to make Americans' lives better, compared with the mounting cost of the Iraq war and Bush's tax policies.

Rep. David Obey, D-Wisconsin, chairman of the House budget panel, issued this statement:

“The same President who is asking us to spend another $200 billion on the misguided war in Iraq and is insisting on providing $60 billion in tax cuts next year to folks who make over a million bucks a year, is now pretending to protect the deficit by refusing to provide a $6 billion increase to crucial domestic investments in education, healthcare, medical research and worker protections that will make this country stronger."

Senator Robert Byrd, D-W. Virginia, chairman of the Senate appropriations committee, issued a similar statement, urging the White House to return to negotiating with Congress on the budget.

Autism Society Calls for Veto Override

Since the Bush White House has not developed a reputation for negotiating with Congress, it is not surprising that advocates at the Autism Society of America are urging its membership to contact their representatives in Congress to override the president's veto.

Here's an excerpt from the argument the society is encouraging autism advocates make to their members of Congress urging them to override the president's veto:

This important legislation would provide significant increases for autism research, public awareness, early intervention and education. Specifically, the measure calls for:

* A 3.1 percent increase in research at the National Institutes of Health, a portion of which can be used to expand, intensify and coordinate research into the causes, diagnosis, early detection, prevention, services, supports, intervention and treatment of autism spectrum disorders. This includes $1 million to reinstitute the Inter-Agency Autism Coordinating Committee.

* $16.5 million for the CDC's Disabilities Surveillance and Research Program, which supports data collection, analysis and reporting, so that we can better understand the scope of the autism epidemic.

* $37 million to increase awareness, reduce barriers to screening and diagnosis, promote evidence-based interventions for individuals with autism and train professionals to utilize valid and reliable screening tools to diagnose autism and provide evidence-based interventions for children with autism and other developmental disabilities.

These important increases will ensure that research into improved treatments and interventions can be explored, and that children with autism are diagnosed earlier, can access early intervention services, and are able to receive a quality education.
President Bush's veto seriously endangers our ability to diagnose, treat and serve individuals with autism and their families.

Nominate Your Pick for Autism Advocates of the Year

2007-11-12T22:03:00.000-05:00

Autism Bulletin is seeking your nominations for autism advocates of the year. Please submit your suggestions and nominations for people, organizations, no matter where they have done their work, by submitting a comment at the end of this blog post or by e-mailing me at michaelsgoldberg AT yahoo DOT com. Explain who nominee is, what work they have done to advocate for people with autism and why their work made a difference this year.

Nominations are due by December 1. Later in December, I will publish an article highlighting the efforts of these people and organizations.

Also see:

Autism Bulletin's 2006 Advocates of the Year

"Combating Autism Act" Funding Caught in Legislative Wrangling; Bush Veto of Research, Awareness Dollars Possible

2007-11-12T19:45:00.000-05:00

Millions of dollars in federal funding for scientific research into autism spectrum disorders and for public awareness campaigns is caught up in an ongoing budget battle between Congress and President George W. Bush, who has threatened to veto the spending bill in which these autism provisions are included.

That's the news in an important legislative update provided by the Autism Society of America, a major autism advocacy group based near Washington D.C. You can read a copy of the update at the society's website by clicking here.

The big picture here is that President Bush has decided, in the last part of his second term, to hold the line on domestic spending programs. A November 6 press release from Rep. David Obey, the Wisconsin Democrat who chairs the House Appropriations Committee, outlines how the Bush Administration and the Democrats in the House view a series of labor, health and education issues. Not surprisingly, the Iraq war plays into the politics of the situation. This is the way the introduction reads on Obey's press release:

WASHINGTON - Even as the President is asking for nearly $200 billion to cover the $10 billion a month we are spending in Iraq (paid for with borrowed money), he is trying to masquerade as fiscally responsible by manufacturing a fight over what we spend in roughly 2 months in Iraq ($22 billion) in investments that will make this a stronger and better country.
At the center of that fight is funding for the Departments of Labor, Health and Education. The conference report considered in the House today provides $150.7 billion, $6.2 billion (4.3%) above 2007 and $9.8 billion above the President’s request (roughly the cost of 1 month in Iraq) for the Departments of Labor, Health and Human Services and Education.
What would that $9.8 billion achieve? Here are some specific examples.

Obey's statement goes on to outline the differences between the White House and the majority in Congress on issues including health care, job training, education, poverty programs and medical research. Obey notes that the House wants to spend more money on all of these programs and Bush wants to cut them, including special education funding under the Individuals with Disabilities Education Act (IDEA).

It is the medical research section that the Autism Society says advocates for people with autism should watch closely. The bill for Labor, Health and Human Services spending "provides $37 million for autism public awareness and early intervention—a $17 million increase over last year, as mandated by the Combating Autism Act of 2006," the Autism Society notes, and adds:

The bill also appropriates $16.5 million for the Centers for Disease Control and Prevention to use toward surveillance and research and $1 million to reinstate the Inter-Agency Autism Coordinating Committee, which would develop a strategic plan for autism research at the National Institutes of Health.
President Bush has vowed to veto the bill because it asks for $9.8 billion more than his budget proposal. Unfortunately, there is not a veto-proof majority in either chamber, so additional negotiations will be needed.

This would be one of those times when it pays to be an engaged citizen. It would be worthwhile to educate yourself about where your House member and Senator stand on this funding bill. Because of Bush's staunch veto threat, it would be especially interesting to go through this effort if you have Republican representation in Congress, because those are the votes in the House and Senate which would be tougher to get if a veto override vote becomes necessary. Let's hope it doesn't.

Also see:

* Bush Signs Combating Autism Act

* More Autism Bulletin stories relating to Congress

Ohio House Takes Up Autism Health Insurance Bill

2007-11-08T22:29:00.000-05:00

The Ohio House of Representatives is considering a bill that would prohibit health insurers from excluding insurance coverage for autism services.

The bill is called H.B. 170, which you can read via the state legislature's website by clicking here. Representatives Jon M. Peterson, a Republican, and Ted Celeste, a Democrat, are co-sponsors of the bill. The bill, introduced in April 2007, does not spell out what kinds of services are covered. According to the legislature's website (which warns that it not to be considered an official record), the bill has been resting with the House insurance committee.

The Associated Press published a story Nov. 8 that summarizes a pattern of activity which advocates for autism services will recognize: a growing awareness that autism services for young children can cost families tens of thousands of dollars a year; health insurance doesn't cover any of it; bipartisan support in the legislature generates a bill to change matters; and a health insurance industry representative oppose the idea. It's a pattern that has played out in several states, including Texas (passed), South Carolina (passed) and Pennsylvania, which as I understand it is still pending. (See past Autism Bulletin articles labeled "health insurance" and an autism insurance map for more background on states around the country.)

In Ohio, the Associated Press lays out two views of the debate by quoting an insurance industry representative, who suggests that autism is another in a list of causes some people would like to see insurers cover; and a provider of autism services, who relays the argument that investing in these services has a long-term return:

Insurance officials are concerned the bill would lead to more mandates based on a disease or health condition.

"Each individual has the belief that their cause is the one that the government needs to find the solution to," said Kelly McGivern, president of the Ohio Association of Health Plans. "We believe employers who buy policies should make the decision."

Continuing treatments, involving such things as speech therapy, a psychologist working on socialization skills and home health aides, aren't covered, said Jacquie Wynn, director of the Center for Autism Spectrum Disorders at Nationwide Children's Hospital.

Autistic children, she said, need 30 hours to 40 hours of intervention a week. Wynn said 30 percent of families who come to the center for treatment leave because they can't afford it.

"There's a cost savings in the reduction of aggressive behavior or the self-care skills they learn," she said. "With short-term, early intervention in their early years, you see the payoff in their lifetime."

An Educator Offers Insights into Families of Kids with Autism

2007-11-06T22:03:00.000-05:00

Barbara Firestone is asking some good questions: "What does it mean for a person with an autism spectrum disorder to lead a dignified life? How do parents help their children navigate in a world that isn't always sensitive to individuals with differences?"

Firestone, the author of a new book called "Autism Heroes," is also offering some insights, based on her listening to and learning from a group of 38 families about their experiences coping with with growing up, going to school, participating (or not) in the community—essentially a collection of concerns that sounds like many of the things that Autism Bulletin readers are thinking about. Besides dignity, other chapters in the book discuss themes like hope, opportunity and love.

I emphasize "sounds like" because the book from Jessica Kingsley Publishers just came out and I have only read brief excerpts. Barbara Firestone is making an author tour on the east coast starting November 11 in New York City with stops in New Jersey, Massachusetts, Pennsylvania and Virginia (more information at the author's book site).

For parents and families of kids with autism, there are so many books coming out that it is challenging to keep up. So why focus attention on this one? Well, the author herself is intriguing: Firestone is president and CEO of The Help Group, a non-profit organization based near Los Angeles in Sherman Oaks, Calif., which runs six day schools for students with autism. She also serves on the California Legislative Blue Ribbon Commission on Autism which recently came out with an important set of recommendations for improving the state's autism services, education and awareness. (For more coverage, see this article.) Someone who is involved in both educating students with autism—a key component to helping individuals grow and develop—who also takes the time to get involved in an important public policy mission offers parents seeking answers and insights the chance to learn something.

Below is a brief excerpt. Firestone asks some good questions, and hints that in some respects, conditions for people with autism are improving:

What does it mean to lead a dignified life? How do parents help their children navigate in a world that isn't always sensitive to individuals with differences?

Families recount how insensitive, uninformed, and distancing the community can be. When children, who otherwise look normal, have disruptive or unusual behavioral problems in public, strangers can be very unforgiving. Frequently, onlookers attribute the child's behavioral problems to ineffective parenting or to the child being a "bad seed." They often stand to the side rather than help, their faces full of judgment rather than empathy.

Some parents have told me that, although it's difficult for them to admit, they wished at times that if their child had to be disabled, that the disability had taken a more socially acceptable form. Some parents make the decision to fully participate in activities outside the home no matter what the cost; others modify what they will attempt; while others retreat, saying that it's easier to avoid being ostracized. And of late, parents are beginning to tell me that they sense a greater understanding in the community— a more "How can I help?" rather than "What kind of parent are you and what kind of child do you have?"

American Pediatricians Make Big Push for Autism Diagnosis, Awareness; Kits for Doctors, Checklists for Parents

2007-11-01T20:55:00.000-04:00

The American Academy of Pediatrics, the national group for 60,000 primary care children's doctors, this week issued a major announcement to educate its members about the early diagnostic signs for autism spectrum disorders, and urge them to look for those signs during baby checkup visits.

This announcement, made at the Academy's annual national conference on Oct. 29, is important because it sets some baseline expectations for what pediatricians around the country should understand about autism, including the essential importance of early intervention services. The documents make clear to doctors (and parents, grandparents and caregivers) the importance of milestones for early childhood development and communications skills. The Academy advises doctors to look for these signs at every well-child visit, or baby checkups. For parents and advocates of young children with autism, the documents also could help set the stage for minimum expectations for early intervention services.

Read the announcement by clicking here. It is impressive in its scope. It includes links to two research studies published in the November 2007 issue of the journal Pediatrics: "Identification and Evaluation of Children with Autism Spectrum Disorders," explains the history of autism, summarizes research so far into possible causes for it, lays out specific criteria for doctors to diagnose autism and explains how to help parents look for developmental delays. The second report, "Management of Children with Autism Spectrum Disorders," establishes the importance of behavioral and educational interventions, including structured teaching methods such as Applied Behavior Analysis (ABA) and Treatment and Education of Autistic and Related Communication Handicapped Children (TEACHH) delivered in low student-teacher ratios "to allow sufficient amounts of 1-on-1 time" for "at least 25 hours per week, 12 months per year."

The Academy said it published both documents as an update and replacement for materials published in 2001.

Diagnostic Signs for Autism Before 18 Months of Age

"Language delays usually prompt parents to raise concerns to their child's pediatrician—usually around 18 months of age," the Academy notes. "However, there are earlier subtle signs that if detected could lead to earlier diagnosis." The signs include:

* not turning when the parent says the baby's name
* not turning to look when the parent points says, "Look at..." and not pointing themselves to show parents an interesting object or event;
* lack of back and forth babbling;
* smiling late; and
* failure to make eye contact with people.

The doctors' group notes:

"Red Flags" that are absolute indications for immediate evaluation include: no babbling or pointing or other gesture by 12 months; no single words by 16 months; no two-word spontaneous phrases by 24 months; and loss of language or social skills at any age. Early intervention can make a huge difference in the child's prognosis. "Autism doesn't go away, but therapy can help the child cope in regular environments," said Dr. Chris Plauche Johnson, a co-author of the reports. "It helps the children want to learn and communicate."

A Heads Up to Doctors About Parents' Use of Alternative Medical Therapies

In addition to developmental checklists, specific guidelines for doctors and explanations of the medical literature about autism and therapies for it, there's an interesting secondary theme the Academy of Pediatrics is working to convey to its members about parents' interest in alternative medical therapies. The message to doctors goes something like this: There's a great deal of media coverage and growing awareness out there about autism spectrum disorders and lots of information on the Internet. Engage parents in discussions, listen to their concerns. Don't dismiss their interest in alternative therapies, even as you share knowledge about evaluating whether a treatment option has evidence to show it is valuable.

Here's a passage from the Academy's announcement:

Pediatricians who treat children with ASDs should recognize that many of their patients will use nonstandard therapies. The report says it’s important for pediatricians to become knowledgeable about complementary and alternative medicine (CAM) therapies, ask families about current and past CAM use, and provide balanced information and advice about treatment options, including identifying risks or potential harmful effects. They should avoid becoming defensive or dismissing CAM in ways that convey a lack of sensitivity or concern, but they should also help families to understand how to evaluate scientific evidence and recognize unsubstantiated treatments.
“Many parents are interested in CAM treatments such as various vitamin and mineral supplements, chelation therapy, and diet restrictions. It’s important for pediatricians to maintain open communication and continue to work with these families even if there is disagreement about treatment choices, ” said co-author of the reports Scott M. Myers, MD, FAAP. “At the same time, it’s also important to critically evaluate the scientific evidence of effectiveness and risk of harm and convey this information to the families, just as one should for treatment with medication and for non-medical interventions.”
Although use of the gluten-free/casein-free diet for children with ASDs is popular, there is little evidence to support or refute this intervention. More studies are in progress, and it is anticipated that these studies will provide substantially more useful information regarding the efficacy of the gluten-free/casein-free diet.

All of this information is available for sale ($70 for members, $80 otherwise) in a package for pediatricians called "Autism: Caring for Children with Autism Spectrum Disorders: A Resource Toolkit for Clinicians," including "screening and surveillance tools, guideline summary charts, management checklists, developmental checklists, developmental growth charts, early intervention referral forms and tools, sample letters to insurance companies and family handouts."

California Autism Commission Prepares Legislation for 2008; Recommendations Cover Health Insurance, Education, Services, Awareness, Diagnosis

2007-10-30T20:09:00.000-04:00

The California Legislative Blue Ribbon Commission on Autism has published a report with recommendations for legislative action in 2008. The commission's 93-page report (a PDF file), presented in September to Gov. Arnold Schwarzenegger and the state Assembly, issues findings about Californians with autism spectrum disorders, describes the presence of autism services in the state and makes recommendations in seven areas, from early intervention to post-secondary education, from health insurance to teacher training, for addressing what it calls "the ASD public health crisis."

This is a big deal for parents and families beyond the state capital in Sacramento; I would expect advocates for autism services across the country to follow closely what happens in this effort, and to glean both insights and lessons from the recommendations and resulting changes to autism services in California. Autism Bulletin readers are a busy group, but if it's possible for you, reading the commission's report is a good use of time to familiarize yourself with issues and challenges families need to address as they support people with autism and advocate for them. It's a quick education in how a big state looks at the autism issue, how it organizes to address autism needs, and how it frames approaches to important issues like health insurance and education.

Convened for two years after a 2005 state resolution, the panel's report notes that it has sought and won legislative approval to remain active for another year, until November 2008, so it can monitor the progress of work on its recommendations.

The Commission's Seven Recommendations: What They Cover

As in other states (such as Washington and Kentucky) that have formed important autism study groups, the California panel takes a comprehensive approach to providing support services to a growing number of citizens diagnosed with autism. (The California report also asserts the relative strength of services and research institutions compared to other states in the U.S.) The panel's recommendations call on California to:

1. Expand early diagnosis and intervention. The panel calls for establishing a demonstration project to serve as a model for expanding the state's ability to identify autism cases early. "the demonstration project should focus on distressed communities; ensure the timely diagnosis of and intervention for children with ASD; improve collaboration among providers; provide support to families and caregivers; establish a seamless system for service delivery between regional centers and local education agencies; and promote smooth transitions" from birth to kindergarten.

2. Enact health insurance legislation. The panel calls on the state to pass laws, regulations "and other policies to ensure appropriate and equitable coverage for ASD by private health plans and insurers."

3. Establish a muscular public awareness campaign. The panel calls on California to "implement a statewide public awareness campaign on ASD" tied to efforts by the state's Department of Public Health to improve access to autism services.

4. Increase the supply of trained educators for students with autism. This recommendation refers to teachers, paraprofessionals and other school-based staff who need specialized training to be effective.

5. Address the need to resolve disputes about autism services between families and school districts. The report's executive summary calls on California to "empower families and local education agencies to collaborate in establishing appropriate and effective individualized education programs for children with ASD," adding that the state needs to review the process for resolving such disputes.

6. Expand the educational and employment options for youth and young adults with autism. This recommendation includes broadening existing post secondary education programs and setting up new technical education models that can lead to employment with supports. The panel also urges the state to "expand innovative community-based approaches to supported employment, transportation, social-recreation programs, and housing for the ASD population."

7. Train emergency workers and first responders about helping people with autism in a crisis.

Endorsement by Autism Speaks Chapters, Focus on Health Insurance

The commission published its report in September, as required by law. On Oct. 22, representatives for the Autism Speaks chapters in San Francisco and San Diego issued statements endorsing the commission's report. You can read a copy of the San Francisco Autism Speaks chapter's press release by clicking on the web link. The statement zeroes in on the health insurance issue as a key ingredient of the commission's recommendations:

"Autism Speaks commends the Commission and its staff for reaching out in countless ways to parents and advocates across California and for listening to our concerns about appropriate and equitable health care insurance for children with autism," said Kristin Jacobson, Chapter Advocacy Chair, Autism Speaks California. "We believe that all health plans and insurers should provide a full range of services for children with autism, including intensive behavioral treatment, such as Applied Behavioral Analysis, a highly effective, evidenced-based intensive behavior modification therapy."

Also see:

* Autism Bulletin articles relating to health insurance

* House Bill Calls on Congress to Establish Autism Education Task Force

Resources for Families of People with Autism in San Diego Wildfire Area

2007-10-25T19:43:00.000-04:00

The Autism Society of America today published a helpful list of contacts for people with autism spectrum disorders and their families affected by the wildfires raging through the San Diego area. The society urges families needing support to contact local chapters and announced:

ASA and its local chapters in southern California stand ready to assist families and individuals with autism spectrum disorders in finding the resources they need to help them find shelter or assistance during this crisis. ASA's national phone number is 1-800-3Autism.

See Resources in Southern Calif. for Families and Individuals with Autism for contacts for local chapters in San Diego, Los Angeles, Long Beach, Ventura County, and others. Click on the links below for those specific Southern California chapters:

Autism Society of California
(Los Angeles County)
(800) 700-0037 (Main Phone)
Contact: Greg Fletcher
E-Mail: ca-california@autismsocietyofamerica.org

San Diego County Chapter - Autism Society of America
(619) 298-1981 (Main Phone)
Contact: John VanBrabant
E-Mail: ca-sandiego@autismsocietyofamerica.org

Los Angeles County Chapter
(562) 804-5556 (Main Phone)
Contact: Caroline Wilson
E-Mail: asalamail@aol.com

Greater Long Beach/San Gabriel Valley - Autism Society of America
(562) 943-3335 (Main Phone)
(562) 941-1931 (Other)
Contact: Rita Rubin/Gloria McNeil
E-Mail: ca-longbeach@autismsocietyofamerica.org

Ventura County Chapter - Autism Society of America
(805) 496-1632 (Main Phone)
Contact: Jennifer McNulty & Cathi Nye
E-Mail: ca-venturacounty@autismsocietyofamerica.org

Inland Empire Autism Society (Riverside County)
2276 Griffin Way, Suite 105-194
Corona CA 92879
(909) 204-4142 x339 (Main Phone)
Contact: Beth Burt
E-Mail: ca-inlandempire@autismsocietyofamerica.org

$2 Million Massachusetts Pilot Program to Offer Autism Services to 80 Low-Income Children

2007-10-22T21:22:00.000-04:00

The Massachusetts Autism Division has unveiled a $2 million model program to provide up to 80 low-income children with autism spectrum disorders with home- and community-based services—as much as $25,000 per year for three years.

Children up to age 9 are eligible for the one-on-one services. Families must apply for the program which applies to children under age 9 who meet the income eligibility requirements of the state's MassHealth state health insurance program for low- and moderate-income families. An announcement from the state says:

The funding for this new Waiver Program is limited and the number of applicants that can be served is also limited. The Autism Division expects that up to 80 low-income children will be able to participate at this time. This Waiver Program will provide one-to-one interventions to help children with severe behavior, social and communication problems through a service called Expanded Habilitation, Education. This service is expected to occur in the child’s home under the supervision of trained clinical staff and will use an intervention method as identified by the family and clinician such as Applied Behavioral Analysis (ABA), Floor Time or a Communication Model. The waiver will also provide related support services such as community integration activities and respite.

The purpose of the Waiver Program is to help eligible children with autism to remain in their homes and actively participate in their families and in their communities. The waiver will serve up to 80 children under the age of 9, with an autism spectrum disorder who meet the clinical criteria for the Waiver Program, as well as, MassHealth financial eligibility, which is based on family income. The Waiver Program provides up to $25,000 worth of services and supports, per year, based on the assessed needs of the child. This Waiver Program is for a 3 year period of time and children are reassessed every year to ensure they continue to meet the eligibility criteria for the program. Participation in the waiver program ends, regardless of the start date, when the child reaches his/her 9th birthday.

Massachusetts families with autistic children who meet the eligibility criteria must apply for this program between Nov. 5 and Nov. 16, 2007. More information is available at the website of the Autism Division of the Massachusetts Department of Mental Retardation. Applications are available in English, Chinese, Creole, Portuguese, Russian, Spanish and Vietnamese. Here's an example of the English form. Contact information for the waiver program is available: call toll-free 1-888-367-4435 or e-mail: DMR.autismdivision AT massmail.state.ma.us.

The state also has set up a website for autism services providers to get information about providing services at home and in the community.

One advocate I spoke to mentioned that there has been some commentary on online discussion forums about this program, about how it's a shame that this program is modest and applies only to low-income families. The advocate also mentioned that there were parents who cited the acute need for families of very modest means to access vital autism-related services. Both are right.

Kansas Autism Task Force Looks at Health Insurance Issue

2007-10-17T20:48:00.000-04:00

Advocates for people with autism spectrum disorders should take a look at the work going on at the Kansas Autism Task Force, where a group of citizens appointed by the governor have been working to identify the scope of the autism challenge facing the state and what to do about it. In particular, the panel's insurance subcommittee is worth watching because it is tackling the thorny issue of how to share the burden for autism services by engaging the insurance industry. In a report on its September 20 meeting which you can read here in a PDF document, the group states:

Two important points were stressed at the outset of the subcommittee meeting:

1. Early intensive intervention provides dramatic cost savings over the lifespan of an individual with autism.

2. The intent of this subcommittee is not to suggest that the entire burden of financing early intervention be placed on the insurance industry alone. The magnitude of the autism epidemic necessitates that this be a shared responsibility.

This statement asserts two important ideas for both advocates and policy makers: that it's cost effective to provide early childhood autism services because it saves money later; and that there's a collective responsibility for helping people with autism.

The meeting report discusses related issues, including:

* The difficulty that families can have in getting coverage for autism services (one parent, the chief operating officer of a health insurance organization, had to spend more than a year appealing denial of speech therapy coverage by Blue Cross Blue Shield of Kansas).

* Comments from insurance lobbyists who say that covering autism services would raise premiums.

* Notes from a 2004 report from the Kansas Department of Insurance saying autism services coverage would have "no meaningful impact" on overall health care costs in the state.

Michael Wasmer, a member of the Kansas task force and a founder of the Kansas Coalition for Autism Legislation, has issued a call for more testimony from representatives from the health insurance industry for the panel's next meeting on October 25.

The Kansas panel is tackling not just health insurance, but all the important issues—identifying the people affected by autism, best practices for providing services, professional development for those providing services, school-based services and funding—with a goal of recommending legislation to improve availability and accessibility of autism services. You can visit the task force's website to see a summary of its second meeting by clicking here.

Also see on Autism Bulletin:

* Update from Kansas Autism Task Force

* Kansas Appoints Autism Task Force with Goal of Improving Access to Services

* Report with Map of State Health Insurance Laws

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