Wednesday, December 17, 2008

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:

Also see:

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

Thursday, December 11, 2008

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,

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 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:


  • 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


  • 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.


  • 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.

Tuesday, December 09, 2008

Kansas Advocates Say State to Consider Autism Insurance Bill

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

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

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

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

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

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

Wednesday, December 03, 2008

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

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

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

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

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

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

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

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

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

Saturday, November 15, 2008

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,, 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.

Thursday, October 23, 2008

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.

Wednesday, October 22, 2008

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.

Wednesday, August 06, 2008

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

Tuesday, July 08, 2008

Great Teachers of Kids with Autism Deserve More Than Gratitude

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

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

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

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

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

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

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

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

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

Also see:

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

Monday, June 30, 2008

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.

Sunday, May 11, 2008

Reprise: Why Families with Autism Need to Celebrate Mothers Often

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

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

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

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

Please feel encouraged to share your thoughts.

Saturday, May 10, 2008

Caring for Siblings of People with Autism

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

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

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

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

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

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

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

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

3.) There is something good going on here.

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

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

Also see:

Ideas for Finding a Sibling Support Group

More Info: Support Groups for Siblings of Kids with Autism

More on siblings on Autism Bulletin

Saturday, May 03, 2008

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.

Tuesday, April 22, 2008

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.

Monday, March 31, 2008

Audio: Interesting Show on Autism at "Studio 360"

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

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

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

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

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

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

Saturday, March 22, 2008

Information About "Autism: The Musical" Documentary on HBO

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

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

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

Also see:

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

Wednesday, March 05, 2008

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Also see:

Obama Unveils Disabilities Plan, Includes Autism in Agenda

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

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

Saturday, February 23, 2008

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

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

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

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

The following is a transcript of his responses to questions:

1. How important is the arbitrator's decision?

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

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

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

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

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

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

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

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

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

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

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

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

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

Monday, February 18, 2008

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

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

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

A Basic Guide to Well-Known Autism Therapies

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

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

Sunday, February 17, 2008

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:

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.

Saturday, February 16, 2008

A Basic Guide to Well-Known Autism Therapies, a website for parents-to-be and parents of young children, has published another article I wrote to help parents and families who are new to navigating the world of autism services.

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

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

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

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

Sunday, February 10, 2008

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

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

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

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

The Most Common Approaches

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

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

What the Researchers Notice So Far

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

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

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

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

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

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

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

Who is the Interactive Autism Network?

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

Saturday, February 09, 2008

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

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

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

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

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

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

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

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

Friday, February 01, 2008

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

Thursday, January 31, 2008

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

Wednesday, January 23, 2008

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.

Tuesday, January 22, 2008

Understanding Autism Spectrum Disorders, 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