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“Honey, an ABC News Film Crew is Coming on Monday …”

This post is written by Liz Bell, mother of Tyler Bell, who was recently featured in an ABC World News Today segment on preparing adolescents with autism for adulthood. Liz is married to Peter Bell, Autism Speaks Executive Vice President of Programs and Services.  They have two other children, Derek and Avery. Liz is a member of the Autism Speaks Family Services Committee and was the primary author of the School Community Tool Kit. In addition, she serves on the Parent Advisory Committee for the Autism Speaks Transition Tool Kit which is under development and scheduled to be launched this fall. Liz is also a representative on the New Jersey Governor’s Council for Medical Research and Treatment for Autism.

Great, we might share the intense teaching and planning required in making the future of a young man with autism a little less uncertain. We can highlight the variable needs of this growing tide of soon-to-be adults with autism.

But “yikes!” How will my 17-year-old son behave in front of complete strangers with a camera in his face all day? What if this complicated message gets garbled, highlighting the challenges but not the gifts, the needs but not the opportunities?

Thankfully, Tyler greeted that camera with a grin on his face, and followed the flow of a familiar daily schedule in his hard working, innocent way. The ABC team turned eight hours of filming into a three-minute segment that helps to profile the needs of young people like Tyler, and hopefully initiates consideration of their place in the world. Now online, the story has sparked a conversation, which is a great thing.

But we need to keep talking. Some online comments outline the variable needs of the autism population – from college graduates who have trouble keeping a job to complex children with no language and few functional skills. We need options for all individuals on this broad spectrum. Other comments offer traditional ‘solutions.’ He can get Medicaid, sign up for get SSI, set up a special needs trust. True, these programs may provide some money, until it runs out, but how do you maximize its ability to provide a meaningful life, to establish supports that will take over once we are gone? You can place him in a sheltered workshop or a group home. Perhaps an option for the handful of individuals for whom there is space and funding, but this old model of isolated care won’t accommodate all of our kids…or be what they want. And that is the part of the conversation that we really need to move forward. How do we create the systems, opportunities and community mindset that will allow all individuals with autism the right to be safe, but also engaged, fulfilled and happy?

During that day of filming, while the rest of us were self conscious, for Tyler the camera was superfluous. But the cameraman was not, quickly noticing that, despite how hard it clearly is for Tyler to learn, he exhibits pride in accomplishment. For him, competence breeds confidence, so we teach him skills that make him feel useful and valued. We strive to fulfill his needs for humor, exercise, beauty, and joy. We want to develop a future that will allow Tyler to grow, not just to be taken care of, and to flourish.

Visioning this is a lot of responsibility for a parent, so we employed group brainstorming in a MAPS session, expertly facilitated by Dave Hasbury of Neighbours, Inc., where we explored Tyler’s strengths, likes, and possible opportunities, to keep us working in what we hope to be the right direction. We are heartened by a team of people who now have a shared perspective of where he might go.

But it is still mostly up to us to make it happen. We learn as we go. We build on strengths and we layer on, tiny step by tiny step, experiences and skills that help to create more independence, more joy. We immerse Tyler in the world and build a community that better understands him. We look to what motivates Tyler, and find ways to use his gifts to provide meaningful contributions to society and a sense of belonging. We reach out for help.

Last year, we asked the friendly owners of our local Rita’s Water Ice store if Tyler might have a volunteer job. We explained that job sampling is a big factor in strategizing for Tyler’s future. Since they had already opened their hearts to Tyler as a frequent customer, they gave him a Rita’s hat and the chance for us to work with him, as he worked for them. This year, it’s a paid job – just an hour or so a week, but an opportunity to punch a clock, have a boss and be ‘professional.’ Does he do the same work as the other teenagers there? No, but they value his smile, the fact that he joins them in dancing when they are so moved, and that he doesn’t pull out his phone to text in the middle of his shift. Yes, these are gifts, as is the perspective of Tyler’s Rita’s bosses, who recognize and celebrate his contributions.

And so Tyler earns a paycheck, the most important predictor of paid work after graduation. But he doesn’t work for that – it’s his favorite Cotton Candy water ice that compensates him for a job well done. And his pride.

After the filming, the rest of our family decided that we aren’t cut out for reality TV – life is complicated enough without having to turn off a mic to use the bathroom. But we would like to continue to be part of this conversation, in visioning meaningful lives for all families living with autism. After all, our children have a right to an amazing future.

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  1. Megan
    August 18, 2010 at 4:55 pm

    Thank you so much for sharing this. As a mother of a young child with autism I often forget the struggles people with autism face throughout their lives. We need to do more to make sure they have a bright and joyful future. The Bells dedication to their son and desire to help him feel connected, happy, and confident is an inspiration to all parents of children with autism. The community they live in is a blessing in Tyler’s life and hopefully we will see more communities with members willing to help out like this as the autism population grows.

  2. K. Donovan
    August 18, 2010 at 6:18 pm

    How can we reach the author to find out more about the “maps session” she describes? I followed the link and it leads to an inclusion site, but I can’t find reference to the maps session.
    Thank you.

    • August 19, 2010 at 5:50 pm

      If you live in IL, we will do the PATHs – Planning Alternative Tommorrows with Hope process for free. It is paid for by the Illinois Council on Developmental Disabilities. Go to our website to read more about it. http://www.iambc.org. Illinois Association of Microboards and Cooperatives, Inc. You can also download help on who to invite to the session. The PATH is a tool we use to help plann that village in the future. It’s all free. You just have to know where to look.
      Same with TN. I believe they do MAPS/PATHs for free http://www.tnmicroboards.org.
      GA http://www.gamicroboardsorg … Just google Microboards. See if they have it in your state.

      A Microboard is a small group of people focused around one person. They use the PATH as a tool.

    • August 20, 2010 at 7:26 am

      You can find more resources about MAPS at this link:

      http://www.inclusion.com/maps.html

      • September 5, 2010 at 10:36 pm

        Yes, it was Jack Pearpoint and Lynda Kahn from Canada and Inclusion Press, that taught us how to do PATHS & MAPS. They will be coming to IL to train again this Nov for anyone interested in learning how to become a facilitator. Check http://www.iambc.org to get more info.

  3. August 18, 2010 at 6:22 pm

    I am a single father of a 14yo daughter with autism. Liz Bell raises a question about residential options that we are tackling in Nevada with the Community Living Subcommittee which I chair, of the Nevada Commission on Autism Spectrum Disorders (http://www.facebook.com/NVAutismCommission.CommunityLivingSubcommittee).

    We are developing recommendations for communities for adults with Autism that will provide meaningful and fulfilling residential, employment, and social/recreational opportunities and choices. Thank you ABC for seeing this as a story that needed to be told, and to The Bells for opening their home to let the story be told.

  4. Diane
    August 18, 2010 at 8:32 pm

    These are the fears that keep me up at night and haunt my days too. My constant worries about who will take care of my boys if something happens to my husband and myself are paralyzing. We can’t even get someone to watch the boys for a weekend so we can get a break .(it’s been almost 4 years since we had a weekend to ourselves) I want….NEED…peace of mind and heart. The outlook for my youngest is bleaker than that of my oldest, who has Asperger’s syndrome. The Doctor says my youngest “might be able to get a job sweeping or ripping newspaper for a pet store”
    . He had just turned 7 when the Doctor told me that….I cried for 3 straight days.

  5. Dadvocate
    August 19, 2010 at 9:37 am

    Great comment Megan. As another advocate once told me, we are so invested in the first 21 years we often underemphasize the next 50! Great job by Peter, Liz, Tyler, and let’s not forget sibs Derek and Avery! Putting a face on the issue is key to getting focus from policy makers.

  6. Liz Bell
    August 20, 2010 at 7:58 am

    The inclusion.com site features the work and resources gathered by the originators of the MAPS concept, which is part of a greater body of thinking known as Person-Centered Planning. For other resources on PCP, check out this link:

    http://www.thinkcollege.net/for-families/person-centered-planning

    good luck!

  7. Teri ashford
    August 20, 2010 at 8:45 am

    Bravo! As rhe mother of a 20 year old- in his last year of High School, I share the platform on this ever increasing need.
    My son has worked for 2 years- sorting cans & bottles for recycling at a nearby college campus. It is a paid job – but his biggest paycheck is his pride in a “good job all done”.
    We have, for the past year, been raising money and seeking funding for an all-inclusive Adult Autism “campus”- complete with homes, a recreation facility and an on-site “workshop”, where we hope to do screenprinting and other jobs.
    So glad that the message is out that there are NOT enough funds to provide our young adults with housing and 24/7 supervision – and that mo amount of money can compensate for the feeling of pride in a job well done.

  8. August 23, 2010 at 11:00 am

    Here in Massachusetts we have recently founded a group called Autism Housing Pathways. Our purpose is to be a clearing-house for research on how families can create self-directed housing. We hope to provide a menu of options appropriate for different levels of functioning and different economic resources. As part of that effort, we are doing research on innovative means of asset development, and hope to launch a revolving loan fund to provide families with down payment assistance.

  9. November 12, 2010 at 12:47 pm

    abc news is of course one of the most reputable news sources these days ‘..

  1. August 21, 2010 at 2:12 pm

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