This is a guest post from Mark L. Olson in response to the New York Times article, ‘Navigating Love and Autism.’ Mark lives in Henderson, Nevada where he is the only parent of a 16 year old daughter with autism; Chairperson, Community Living & Employment Subcommittee, Nevada Commission on Autism Spectrum Disorders; and, President & CEO, LTO Ventures, a 501(c)(3) nonprofit company developing live/work/play communities for adults with autism.
I read with mixed emotions the December 26th New York Times article “Navigating Love and Autism” about Jack and Kirsten, a young couple with Asperger’s Syndrome discovering how to have a relationship with each other. The romantic in me found their story inspiring and hopeful. But as the only parent of a teenage daughter with autism, another part of me felt frustration about the lack of attention to and help for autism’s “fly-over” population — the huge group of teens and adults who are often nonverbal, may never expect to live independently, yet deserve the chance to choose the kind of life they want to live.
“Fly-over” is a term I heard often growing up in the Midwest and attending University of Kansas. It refers to the majority of the US between the East and West Coasts that airline passengers look down on when they fly over. It also refers to a mindset in the media that the most valuable audiences are located in New York and Los Angeles, and to which their programming overtly caters.
Autism is a broad spectrum disorder just as the U.S. is an expansive land mass and melting pot. A favorite expression in our community is that “if you’ve met one person with autism, then you’ve met one person with autism.” Our community and efforts to help persons with autism benefit from all the awareness we can generate, but sometimes it feels like that attention falls largely onto two ends of the spectrum.
At one end, thanks to organizations like Autism Speaks and others, kids as young as 18 months benefit from more research dollars than ever directed toward finding the cause of and a cure for autism, while insurance mandates are in effect in the majority of states that emphasize funding for ABA therapy and early intervention, diagnosis, and treatment.
At the other end of the spectrum are the Aspies and HFA teens and adults like Jack and Kirsten who are the focus of media coverage, movies, federal programs such as Medicaid and the President’s Year of Community Living. They are also the primary beneficiaries of the Protection and Advocacy (P&A) Network created by Congress and self-advocacy organizations bent on eliminating all barriers to living and working exactly the same lives as “typical” Americans.
But what about the fly-over population? My daughter is one of them and we live this struggle every day. (I also run my own 501(c)(3) nonprofit company developing live/work/play communities for adults with autism and chair a subcommittee for the Nevada Autism Commission on community living and employment.) I see this issue from many perspectives and I’m increasingly disheartened by the chasm of resources and choice expanding between our community’s newest affected and our most capable.
My daughter is 16 and nonverbal, although she can hear and understand some of what is said to her. She’s not high-functioning enough to enjoy true independent living, and diagnosed at age 12 she was too old to benefit from aggressive early intervention protocols. I expect she will stay in her special needs school until her IDEA eligibility runs out and we are planning for guardianship now. But I’m also 39 years older than her and while I like to believe I’m immortal, I’m pretty sure I’m not. So that means planning for where she is going to live, what kind of work she might do, and what chance at a social life she can expect.
Let’s start with housing options. My daughter deserves the right to choose any residential setting in which she wants to live. It is estimated that 85% of adults with autism live with parents or a family member until they can no longer be taken care of. As with many kids with autism, there are daily living skills she does well, and others (bathing, feminine hygiene, house cleaning) that are a challenge. Some disability self-advocates argue her only option outside of my home should be in her own apartment or home no closer than 1000-1500 feet from any other disabled person.
She can’t live alone in a scattered site apartment because she doesn’t know how to cross a street safely, or how to avoid neighbors who might bully, exploit, or abuse her. It’s a ludicrous notion to expect her neighbors to be her “it takes a village” safety net. She can feed herself, but she cannot use a stove or microwave to prepare a hot meal. A setting where she could go to eat or pickup meals of her choosing would be ideal.
A planned residential community optimized to accommodate her autism such as a disability-based campus or farmstead would be a great solution. Unfortunately, Medicaid, certain self-advocacy groups and the P&A Network are doing everything they can to deny her freedom of choice and impede development of innovative settings. (Read more at “Choice v. Olmstead“)
Now let’s talk about work. My daughter is blessed with exceptional physical strength and decent gross motor skills. With supervision she can do fine motor projects and follow multi-step instructions…for a while. But she cannot speak, read or write. She will never be able to pursue competitive employment on the open market, but that doesn’t mean she can’t earn a minimum or higher wage. A work environment created to accommodate and develop her abilities would be ideal. But again the same forces are at work to eliminate these optimized settings as discriminatory.
Would she like a social life? A relationship like Jack and Kirsten? I don’t know. I do know she is highly sociable and enjoys the company of affected and typical kids and adults. A setting where she could freely walk around, meet up and hang out with persons like her and enlightened members of her surrounding community would be ideal. But transportation, availability of programs, and lack of funding marginalize anything except a public park or shopping mall.
Jack and Kirsten’s story is informative and heartwarming. But as we enter 2012, I implore the autism community, media, government and especially those self-advocates who resist progressive thinking and innovation, to not forget the impact they have on our “fly-over” population. Their story deserves to be told too. They deserve the right to choose how they want to live.
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This blog post is written by Peter Bell, executive vice president for programs and services for Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division. Peter and his family reside in New Jersey, his oldest son Tyler has autism.
My heart is heavy today. A few hours ago, I learned that one of my favorite disability advocates passed away on Tuesday. His name was Matthew P. Sapolin and he was the commissioner of the Mayor’s Office for People With Disabilities in New York City. He lost his fight against cancer, a disease he had been battling most of his life. He was only 41. But cancer wasn’t his disability. He was also blind. According to his friends and colleagues, his blindness informed his life, it did not narrow it. As a dad of a young man with autism, I like that description. The New York Times published a wonderful article about Matthew’s life, his accomplishments and the mark he left on the disability community. I would like to dedicate this tribute to the mark he left on me.
I first met Matthew at a disabilities housing conference in 2010 at the Federal Reserve in Washington, DC. We sat next to each other and although we didn’t talk much, I was impressed with his ability to navigate all aspects of his life. I did get to know his service dog quite well. He was kind and gentle just like his owner.
In April of that year, Commissioner Sapolin hosted a special ceremony at City Hall to commemorate Autism Awareness Month. He personally attended the event, which honored several advocates from the autism community, and spent considerable time talking with the attendees. He also delivered a speech that made it clear he understood the many challenges people with autism face. His compassion for others was palpable.
Two months later, I joined Autism Speaks co-founder Suzanne Wright for a meeting at City Hall where we talked with the Commissioner about our awareness initiatives and family services programs designed to help people with autism in New York City and beyond. He listened, gave us advice, showed that he cared and importantly offered to help. Exactly the kind of meeting one would like to have with every administrative official!
My fondest memory of Matthew, however, was spending time with him on the South Lawn of the White House in July, 2010. We were there to commemorate the 20thanniversary of the American Disabilities Act (ADA). It was a beautiful day, not a cloud in the sky. Temperatures hovered close to 100 degrees, most of us were sweating profusely. We talked about how fitting it was for the occasion. When it came time for President Obama to walk a line to shake hands with the attendees, it was obvious that only a few would be able to personally greet the President. Suddenly, we were in a “disability mosh pit” vying for our moment of fame.
Matthew’s beautiful wife Candra was at his side but they got separated as the President made his way to our section of the line. I was in the front row and about 30 seconds from my chance to meet the President of the United States. But suddenly I decided that it was more important for Matthew to meet the President than me. That day was about him more than it was about me (or my son with a disability who couldn’t be there). So I turned around, gently grabbed Matthew by the shoulders and guided him to the front of the line where he got his 15 seconds to personally talk with President Obama. I wish I knew what they said to each other.
As soon as they were finished, Matthew swung around and had the most incredible look of joy on his face. I can still see that expression now, it will never leave my memory. He didn’t know where I was standing; he shouted my name and when I told him where I was, he gave me a big ol’ hug. Candra handed me a camera (or maybe it was a phone) and asked me to take a picture of them. Shortly thereafter, I managed to get my Blackberry to snap a picture of the President (see attached) as he made his way down the line. It was a surreal moment for all of us and one that will probably last with me forever. And Matthew Sapolin was a part of it.
I haven’t seen or talked with Commissioner Sapolin since. I didn’t know that his cancer had returned. I knew Autism Speaks was working with his office on some autism awareness initiatives but his death came as a complete surprise to all of us. His passing is a huge loss to our community. Not just to Autism Speaks, or the autism and disability community but our community at large. He represented all of us. He showed us how to live courageously as well as compassionately. He stood for those who can’t always stand for themselves. I learned valuable lessons from him and hope to carry these forward as an advocate for the disabled. Thank you for modeling these qualities for us. Rest in peace, Matthew.
With the release of the first major report of the Autism Speaks Baby Siblings Research Consortium, the world learned that the autism recurs in families at a much higher rate than previously estimated. For perspective and guidance, the national media turned to our director of research for environmental sciences, Alycia Halladay, PhD.
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Autism Speaks’ Alycia Halladay, Ph.D., provides perspective on NPR’s All Things Considered. To listen to the segment, visit here.
The CBS Early Show aired, ‘Study suggests link between Autism, siblings’ that can be viewed here.
For Siblings of Autistic Kids, Risk Is Far Higher Than Thought (TIME)
Autism runs in families to a much greater degree than previously thought, according to new research that has tracked the younger siblings of children with the developmental disorder. Read more.
Chance of having more than one autistic child higher than thought (MSNBC)
Siblings of kids with autism have a higher risk of being diagnosed with the disorder than previously believed, suggests a new study. Read more.
Autism Risk for Siblings Higher Than Expected (The New York Times)
Parents who have a child with autism have about a 1 in 5 chance of having a second child with autism, a far greater risk than previously believed, new research shows. Read more.
Autism Speaks Chief Science Officer Geraldine Dawson wrote a letter to the New York Times in response to an editorial entitled “Autism Fraud.”
To the Editor:
Re “Autism Fraud” (editorial, Jan. 13):
The latest British Medical Journal paper about autism and vaccines, which provides evidence that the initial report linking autism and vaccines was fraudulent, and the media coverage that ensued, miss an important point: Until science discovers the causes of autism and explains its dramatic increase, parents will continue to reach their own conclusions and desperately try a wide range of treatments, whether there is evidence to support them or not.
The answer is not to look to the past and look for blame, but rather to look to the future. We need increased research financing directed toward rigorous science that can provide the answers that parents are looking for and deserve. Until this happens, we will continue to wallow in controversy, and people with autism and families will continue to struggle with autism on their own.
Chief Science Officer, Autism Speaks
New York, Jan. 13, 2011