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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We are so thankful for the outpouring of advice that has flooded in for us to share with the Autism Speaks Community. Who better to give advice than you all, the people that know best! We have heard from people on the autism spectrum, parents, siblings, teachers, therapists, and beyond. Your advice has been broken down into categories, and we will post accordingly!
Having a child on the spectrum can feel isolating enough. Don’t be afraid to tell people about your child. Everybody knows someone touched by Autism or Asperger’s! You never know how you might help someone else by simply opening the door. -Heather
As a sibling of someone with autism, the best advice that I could give is to teach the other children or child in your family what autism is and how to be the best support and role model for their sibling with the diagnosis. Ultimately, they can be a wonderful teacher, peer model and friend to your child as they grow up into adulthood and contribute to keeping the family strong through this journey. – Elif
Being a sibling to an Autistic child, especially being the only and oldest (such as myself) I recognize the importance of family relationships. Be honest and involve siblings with all decisions. Offer lots of private time because they do lose out on experiences when bringing an Autistic child to places such as Disney or even having friends over are too stressful. Be upfront about the responsibilities we will someday face but be cautious. I realized at 12 that someday my parents will be gone but small steps ease this realization. An open dialogue and allowing siblings to have a passion or hobby they can be immersed in is helpful. You may sense resentment at times and things may be said but never doubt that we love our siblings and will do anything for them. –Natalie
When our grandson comes to us after school feeling fried and close to a meltdown, I take him aside in a peaceful spot and just hug and hold him and let him know how much I love him. He comes around quickly and is happy again. –Donna
These children require a lot of attention every day but with the help of their parents, schools and professionals they can have a successful life. We are all in it together. –Rebecca
Remember to take time for yourself. A happy, healthy mom or dad is so important for any child, especially one on the spectrum. It’s usually you and your kids against the world, so take care of yourself, so you can take care of them. –Sarah
Don’t treat it like the end of the world, because it is not! It will always get better and easier with the help of family and friends. –Erin
It is not the end of the world. As our world was turned upside down I remember asking myself “why” “why us” where did we go wrong, what could we have done different. The truth of the matter is there is nothing that we could have done different; there is nothing we could have done to prevent this from happening to our daughter. Get together with parents in your community with ASD children and talk, cry, laugh share stores find someone on line that you can connect with DO NOT TRY TO DO IT ALL ALONE!!! –Katie