Dear Lenore and Mary,
Thank you, from the bottom of my heart, for your courageous decisions to share your sons’ stories with the world on Dateline NBC’s Special Report on Autism, On the Brink. For myself, as the parent of an adult son with autism spectrum disorder (ASD), I remember those raw feelings of abandonment and desperation after he graduated from high school in 2005; the stark realization that my husband and I were alone in an uncharted world. No one tells you that the first 1-3 years after graduation can be grueling. My family scoured our community looking for that instructional manual only to realize (like you did) that we’d be writing it for our son.
We know that existing state and federal programs aren’t set up to provide long term services for young adults on the autism spectrum after they turn twenty-one. Agencies that do offer related services (ie vocational training/job support) are either understaffed due to budget cuts or are buried under obscene caseloads. Should there be a federal mandate for ASD services? Absolutely. Can any of us afford to wait for this to happen? No.
What will it take for monumental change far greater than any of us can imagine?
It takes what we’ve always had: change at the grass roots level in communities all across the country – change that started 10-12 years ago because moms with young children diagnosed with autism reached out to support each other because nothing else was out there. Informal parent support started with 3-4 moms and a few kiddos all across the country. Groups that dug in and stayed the course, over time created age appropriate programs and services, watched their memberships grow, became not for profit organizations, held fund raisers to support existing and future programs.
Today, many of these organizations are considered to be the autism experts in their communities. I know of at least one such organization actively exploring what programs and services its membership wants and needs for these crucial transition years after high school. Imagine. Autism-specific programs and services for everyone ages 18 and older who needs them.
Imagine outside-the-box strategies. Transition plans are built into educational programs. (Hard to believe, I know.) Let’s get really creative; re-design the final two years of high school to allow for individual students to develop life plans about their visions for themselves. We can do better than what’s currently in place.
Imagine community partnerships/mentoring relationships with community leaders. Local businesses hiring qualified workers who just happen to be on the autism spectrum – businesses receptive to learning about how an individual’s learning style and work habits are influenced by their autism diagnosis. Look around. It’s already happening. We just need to be more vigilant about getting the word out. And we need to do more.
Instead of dire predictions of what we’re fearful about: “chaotic futures” for our kids after high school, convinced that they “ … are at the end of their lives,” we need to deliberately change that language. Imagine, instead, lives of possibilities! Let’s not have our kids “age out” of school. Commit to life-long learning. Celebrate graduations from high school. (You both did that, wisely listening to your sons about what they wanted.) Think of the next 1-3 years as a series of transformational events in which both good and bad things happen. Because that’s life and it’s not all supposed to be easy.
That said, I don’t want you to think I’m a naïve, rah rah girl dancing all over the autism spectrum. I’ve been coaching my son (behind the scenes) in the work place for ten years. Some of what we’ve experienced has been brutal. And the words, when I found them, were as bleak and despairing as yours.
Like both of you, I “dug deep” and managed to pull things together. We’re still at it. Although he works fulltime, he still lives at home. I’m halfway through a leadership program offered through a partnership between Cornell University and The Advocacy Center, in Rochester, NY. The program, Partners in Policymaking, is a national model of leadership training for people with developmental disabilities, parents and family members. The program, started 20 years ago by the Minnesota Governor’s Council on Developmental Disabilities, sends its graduates out into their communities to develop productive partnerships between people with developmental disabilities, parents, family members and those in position to make policy.
Imagine being an effective voice for change when it comes to policies for people with developmental disabilities. Never, in my wildest imaginings, did I dream that I’d want to be one of these voices. The amount of work that needs to be done is staggering. Both of you showed the nation how critical it is that we get started now, this minute, to fix what’s broken, to re-imagine strategies and solutions, to forge new partnerships with individuals and companies, agencies and most importantly, to create opportunities for those who have the most at stake.
Changing policy is where our future lies. Boots on the ground, autism-specific transitional programs and services are almost here. Reach out to an autism parent organization where you live … because you’re right. We can’t do this alone. Know that you’ve already profoundly changed millions of lives with your stories. They’ve become the rallying cry to make sure that none of us will ever be alone again.
With heartfelt thanks,