Dan Burns on The Reality of Autism at Age 22: When The School Bus Stops Coming
Posted Dec 13 2010 12:00am
Managing Editor's Note: Few in the media are tacking the harsh reality of what's coming as teens with autism head toward "aging out" at age 22. Dan Burns ran this entry in the Dallas Morning News MomsBlog . Nancy Churnin runs this blog and she has gathered a wonderful group of writers speaking candidly on autism. Please support her work and add her to your favorites http://momsblog.dallasnews.com/ .
BURNS: My 23-year-old son with autism, Ben, did well in school, at least according to his report cards. He graduated with honors but could not get a job. Tell me about autism through the lifespan. What are the challenges for families of autistic students after the school bus stops coming, and why is that important?
HOLMES: Seventy-five percent of a child's life is going to be as an adult. Yet when a child has autism, there is often little if any planning for the adult years. Report cards for kids with autism are typically filled with hyperbole and are all but useless as a measure of success. They make everyone feel good, but that good feeling is not related to functional, practical capacity in the adult world. So parents are led along for 21 years and then dropped off the face of the earth. Too often in my consulting work I'm looking at a 20-year-old young man who is receiving educational services. He's doing the alphabet or counting from one to twenty but he still can't tie his shoes. That young adult will enter the workforce unprepared. Not underprepared. Totally unprepared for anything except adult day care. The parents, shocked and disillusioned, will try to pick up the baton and train their son or daughter for work, but they are now more elderly and less capable than when the child was first diagnosed. He's eligible for community services, but no longer entitled.
PHOTO: Dan's son Ben at North Texas High School
BURNS: What is the difference between entitlement and eligibility?
HOLMES: The educational years are called entitlement years. Johnny may have some serious language or social or behavioral challenges, but he can always go to school, and that's good. But the entitlement years end at age 21 or 22, and now we enter the eligibility years. Eligibility, at the end of the day, means stand in line. We have waiting lists for community services. In Texas it's a 10-year wait or more. That's enough to wipe out any progress the young man or young lady has made.
BURNS: You've spent decades watching the struggles of parents. What have you learned?
HOLMES: Never come between a mama bear and her cub. Mothers especially are hugely protective of their children. Often they wear rose colored glasses as a coping mechanism, viewing serious behavior in a positive light. They'll say, "Well, my son is very active young man. He gets a little frustrated when things aren't done just the way he wants them. And then he gets upset. He'll punch me. He'll pinch me, or bite me. But every time he comes back and he's remorseful, he didn't mean it. He can't talk but he hugs me, and he smiles at me." And I look at that mom and I say, "Listen, Mom, I fully understand what you're going through. But in the real world that's called assault and battery. You've got to take your rose-colored glasses off now. We all get frustrated. But if I kicked holes in my house every time I got frustrated, somebody would call the police at some point and I'd find myself in jail. You don't want that for your son. Read the literature about spousal abuse. You are living the same kind of life. It's a threat/placate kind of life, and we're going to have to change that pattern. We've got to deal with this behavior and hold him accountable if we want him to be successful in life."
BURNS: What has changed in adult services over the past five years, and what needs to be changed?
HOLMES: There is a growing a sentiment that we have an epidemic of autism in this nation. There are tenfold increases of children being diagnosed on the spectrum autism, and we know that they are going to become adults. Yet we still have not ratcheted up our adult services programming to secure their future.
BURNS: If nothing changes?
HOLMES: Until government at the state level focuses specifically on the needs of adults with autism, only those kids whose parents have exceptional physical, fiscal, and emotional resources are going to move forward in their adult years. The majority of adults with autism will languish. They'll be living life on ice.
Dan E. Burns, Ph.D., is Adult Issues Liaison for AutismOne and the author of Saving Ben: A Father's Story of Autism . Get the full story HERE . Burns is developing the Autism Trust USA, modeled on The Autism Trust (U.K.) and focused on the creation of new campus communities where adults with autism can work, live and improve their skills and talents in a creative and supportive environment.