Useful Article to Explain Autism Diagnosis to Kids

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

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.

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

Autism Bulletin Twitter Feed

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.

Support Group for Siblings of Disabled Now on Facebook

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.

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.

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.

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.

Interesting List of Blogs by Parents of Kids with Autism

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.

Another Source for Presidential Campaigns and Autism Policy

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

Which Autism Parent Blogs Do You Like?

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

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

What to Do When Your Child Gets an Autism Diagnosis

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.

Top Stories on Autism Bulletin in 2007

Here is a list of the top 10 stories on Autism Bulletin as measured by readers' interest:

1. Map of State Autism Insurance Laws

2. Texas Governor Signs Autism Insurance Bill

3. 17 States Require Some Insurance Coverage for Autism, Recent Survey Finds

4. Autism Schools Map Project

5. Colorado Passes Early Intervention Plan that Applies to Autism

6. New Florida Autism Charter School Opens in Tampa

7. MTV's "True Life" Features Teens with Autism

8. Texas Lawmakers Pass Bill to Cover Some Children's Autism Services

9. Wisconsin Governor Calls for Autism Coverage

10. Nick News Focuses on Autism


The top five "Labels" readers researched on Autism Bulletin in 2007:

1. ABA

2. Autism Services

3. Asperger's

4. Health Insurance

5. Legislation

Source: Google Analytics

Autism Bulletin's 2007 Advocates of the Year

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.

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

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.

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

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.