Autism and the transition to adulthood: it’s not a sprintOct 20th, 2011 | By Caryn Sullivan | Category: Autism Spectrum Perspective, Recent Blog Posts
I sat down at the table for our 2 p.m. meeting and looked up at the clock. We were about to design my son’s last IEP (Individualized Education Plan) – the roadmap for his final services from our school district. Minutes passed before I realized the hands on the clock had stopped at 1:50. Oh, how I wish that time was truly suspended, I thought. Because as hard as I have worked since my son was diagnosed with autism in 1993, he doesn’t appear ready to be discharged from the system that has supported him since he entered the birth-to-three program so long ago. But, of course, it is only that clock on which time is suspended. In the real world, it’s moving forward, too quickly for my comfort. Tick tock. Tick tock.
As we discussed the options available to prepare him for employment, I thought about how much emphasis is placed on early intervention. Hurry up and secure services, we’d been told. Time is of the essence. So we invested incalculable time and large sums of money to position him for the best possible life. I’d operated under the illusion that the give-it-my all approach would wind down, even cease, at some point.
Outside our meeting place, the world was unraveling. City by city, country by country, citizens were gathering to protest. Things are not as they should be, they proclaimed. People are unemployed or underemployed. They are losing their homes, their retirement and college savings. It is a time of great discontent.
Against that backdrop, we discussed the future of my son who has scattered skills, elusive motivation and ongoing challenges, as well as an intellect that is often underappreciated. The people gathering around the world to voice their dissatisfaction are presumably more readily employable than he. How will he spend his days? How will he find something that gives him joy or satisfaction in his life? Could we have reached this juncture at a worse time?
To get ready for a real job, I was told, he could work four hours per week at a light industrial concern doing cleanup. A job coach would help him to develop strategies to address anxiety or anger issues. He could also volunteer at the library for an hour per week as part of an adopt-a-shelf program. Seriously? Four hours per week emptying garbage? That is the end game, after the scorched earth attempt we made to socialize and educate him, at great expense to taxpayers and ourselves? He has skills and brainpower. He figured out how to establish his own Amazon.com account (and used it). He writes beautiful stories. He once spent 30 minutes giving me a tutorial on the differences between mythological characters from different cultures. Surely there are greater, more fulfilling, options awaiting him.
As I left the meeting with my son by my side, I had more clarity about my own future than I did about his. Unlike most mothers of 20 year olds, my responsibility is not winding down. Instead of taking him to speech or occupational therapy as I did a decade ago, it seems I will be investigating and trying to secure volunteer, employment, or training opportunities that will match his interests and potential. In order for my son to have a busy, purposeful life, I will continue to be engaged, as his researcher, advocate, and cheerleader – for many years to come.