Dan Burns, on Autism and What to do after the Bus Stops Coming

"Let the school take care of him until he ages out, and save your money for his institutionalization."

That was not the graduation scenario Dan Burns had in mind for his son, who, at the age of three, was diagnosed with autism.

In his book, Saving Ben: A Father's Story of Autism, Burns talks about the struggle and the journey ─ the challenges, breakthroughs, disappointments, acceptance and his love in raising Ben, his severely retarded and autistic son. Ben is now 22 years old.

Here, Burns talks about the difficulties he faced, after the school bus stopped coming:

"For decades I’d worked hard to build a bridge to a better future for my son. He’d once been labeled by the school system as severely autistic, profoundly retarded, and untrainable.

But after years of ABA training and biomedical interventions, Ben was a healthy, happy kid who had a decent attention span and could follow instructions. He spent his high school years in a pre-vocational work/study program: setting tables at Luby’s Cafeteria, folding pizza boxes at Cici‘s, stocking the video shelves at Wal-Mart, sweeping the aisles at Ruibal’s Plants. And he had great expectations.

During the weeks leading up to graduation, Ben carried around his Jobs People Do picture book, imagining himself, I suppose, as a farmer, doctor, or pilot, like the kids in the book. I knew those careers were far beyond his capabilities, but at least he seemed to be on the path toward a job.

When Ben graduated, his one-on-one school aide, Sharon, stayed behind. All his pre-vocational experience had been under her supervision. She had organized the work, guided and praised him, and kept him on task. Ben’s mom and I, lulled by his work/study experiences and academic progress reports, were unprepared for the magnitude of the challenges he would face in the real world.

An hour into Ben’s first solo job interview, with Goodwill Industries, the interviewer called me into the room and sat me down. 'I showed him a spoon and fork and asked him to hand me the fork and he did nothing,' the interviewer said. 'Same with the spoon.' I knew that adults with autism often interview badly, but I was stunned. 'There is no point in continuing the interview,' he said. I agreed. Ben had totally shut down.

Weeks later, a letter from the Texas Department of Assistive and Rehabilitative Services, addressed to Ben, summed it up: “Because of the severity of your disability, an employment outcome cannot be achieved. You are not eligible for rehabilitative services.”

That was a major blow.

As his mom and I saw it, a job was Ben’s link to a life beyond the one we had constructed for him. We felt that we were at the edge of the cliff. I know that Ben deserves a place in this world as a vibrant young adult: healthy, happy, and hopeful. His mom and I will find a solution for our son. We have trial jobs lined up for him at two sheltered workshops in the Dallas area ─ the Metrocrest Rehabilitation Center and the Citizen's Development Center ─ sorting and bagging components, as he’d done in class.

Our cliffhanger with Goodwill Industries, though, made me think. What about other young adults with autism? What are the job prospects for them?

According to a Florida study conducted in 2008 by The Center for Autism and Related Disabilities (CARD), 74% of the young autistic adults surveyed wanted to work, but only 19% were currently working.

The numbers are likely to get worse.

A recent prevalence study by the Centers for Disease Control and Prevention shows that Autism Spectrum Disorder has increased almost one hundred-fold in the last decade, from 1 in 10,000 in the year 2000 to 1 in 110 today. According to a report prepared by the Organization for Autism Research, 80% of these kids are under age 22.

What will the Department of Rehabilitative Services say to this tsunami of citizens with ASD when they “age out” as young adults? Where will they work and live? Where will they find friends and supportive communities when we, their parents, have passed on? Ben is on the crest of this tsunami.

The shock of the Goodwill interview got me thinking about opportunities that his mom and I had missed in preparing him for the working world.

Here are five lessons I wished I’d learned before the school bus stopped coming for Ben:

1. Institute a rigorous program of household chores and savings.

2. Consider a summer job for your ASD child instead of summer school.

3. Work with the school system to create internships in competitive employment and/or sheltered workshops.

4. Participate in weekend work retreats with your ASD child.

5. Resist school system-induced dependency. Among other, more useful achievements, school taught Ben to sit down, shut up, and wait for orders. That’s not enough in the workplace. Teach your child to advocate for himself: speak up, hold his ground, ask questions, oppose unfairness, see a need and fill it.

No doubt you can add to this list, and I hope you will.

Whether our children are school age or adults, we are in this together. We need a national agenda for living and learning with autism, an agenda that will address our children’s needs for jobs, homes, and supportive communities. As we enter the new decade, here are some resolutions we can work on:

• Create a service movement like Teach for America or AmeriCorps that employs young people as life coaches to work with ASD kids.

• Connect with Advancing Futures for Adults with Autism (AFAA).

• AutismOne – Get involved.

Once again, we as parents can ignore, accept, or fight. Ben summed up my choice in three words: Don’t give up.

For more on Dan and his book, check out his recent interview on DTV (Denton TV).