Insights for Parents of Disabled Kids from Nobel Laureate Kenzaburo Oe

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.)

A Note About Autism Bulletin on Twitter

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

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.

Autism Readings, Resources from Around the Web

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:

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

Autism Insurance Legislation Updates

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

Publish at Scribd or explore others: Politics & Governmen Presentations & Slid autism legislation

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

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

Autism Advocates Scheduled to Meet with Obama Transition Team

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

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.

The Grandparent Autism Network of Orange County, California

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

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

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

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.)

Autism Legislation Advocates to Meet in September

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)

How to Find Autism Health Insurance Information

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

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.

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

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

Understanding Autism Spectrum Disorders

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

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.

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

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