More Autism Resources for the Presidential Election for Voters

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

Statements on autism by the presidential candidates.

Excerpts below.

From McCain's statement:

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

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

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

From Obama's statement:

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

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

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

Links to the candidates' websites:

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

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

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

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

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

1.) The Role of Government in Our Lives

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

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

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

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

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

2.) The Healthcare System in America

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

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

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

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

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

3.) The Role of the Courts

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

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

4.) Awareness Is Not Enough

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

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

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

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

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

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

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

Roach's Olympic quest has been both complicated and enriched by her son Drew, who is autistic. Not long after Drew was diagnosed three years ago, Roach went into a near depression.

A devout Mormon, she prayed her son would get better. When he didn't, she went to her bishop in tears. He told her to stop focusing on what Drew couldn't do.

It was, she says, a turning point. She began to truly embrace who Drew was — living in the moment with him and not dwelling on the past or the future.

"I really feel like that concept of enjoying the now and not worrying about the future is what my coach has been trying to teach me for 14 years — and that is what has made me such a different athlete 10 years later, and that is what has made me strong enough mentally to make this Olympic team."

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

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

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

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

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

(Photo from melanieroach.com.)

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?

Autism Legislation Advocates to Meet in September

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

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

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

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

Also see:

• Autism Legislation Meeting Planned (2007)