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Dan Burns on The Reality of Autism at Age 22: When The School Bus Stops Coming

Abandoned-vehicles-old-abandoned-school-bus 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/.


Dr. David L. Holmes is the author of many books, including Autism through the Lifespan: The Eden Model. He is on the psychology faculty at Princeton University and is a licensed school administrator, principal, and teacher. I asked him about the challenges facing young adults with autism.

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

danburnsbenatdallashigh.JPGBURNS: 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."

danburnsgraduationhat.JPGBURNS: 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.

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Amy: nothing beats the scenario Chew recently detailed when the car they usually use was going to be fixed so she took the other car to drive the kid to school and when he had a meltdown because his rigidity is so bad he wouldn't tolerate the change she called the husband to quickly have him bring the other car asap. Caved right in to the kid. I really wonder if there is any BCBA advising this woman for the kid's sake.

http://www.telegram.com/article/20101214/NEWS/12140391/1116

If parents don't take off those rose colored glasses this could be the result once they reach their 20's.

ObjectiveAutismDad, I agree that most individuals on the spectrum do not understand what they are doing when they act out, but the most important thing for parents and caregivers to do is to determine the antecedent to behaviors, give the communication required (whether that be intensive verbal intervention or use of augment. devices) to reduce frustration and then follow through with reducing the existing behaviors. The wrong thing to do is to avoid confrontation and mold the child's world into some rote routine and not expect them to deal with the realities of life. Pay now or pay later as the saying goes and some will be paying later for sure.

I have an 18 year old daughter with PDD Autism and am experiencing many roadblocks that I just can't get through all the paperwork and the doctors thinking that there is nothing different cause she is on her best behavior when consulting with them.No one knows what these young adults have to go through except themselves and their parents and still where do we begin? I look to the the blogs and other posts and websites from Parents and get more information and answers than alot of doctors and counselors I have had to talk to and appreciate everything that you guys say because only a Parent knows their child the best and we all want to help out Special Kids.

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"...We've got to deal with this behavior and hold him accountable if we want him to be successful in life." My son doesn't understand what he's doing when he acts out. I think this is the case for most children with autism. I'm certain that "holding him accountable" in whatever fashion would be a huge waste of time -- because he doesn't have any understanding of what he's done.

Age 22 scares the h-e-double-toothpicks out of me.

Having worked for 8 years directly supporting people with Severe Autism, I have seen firsthand how adults languish on thin ice when not given the amount of support they need. The situation in Indiana is now dire since they have announced historic funding cutbacks, reducing the services even more and placing a greater burden on caregivers like myself who will now be charged with caring for up to three adults with Autism, instead of one or two. And these are the people who have the greatest behaivoral issues. I did have one issue with Dr. Holmes statement that violent outbursts by Autistic children towards their parents is assault and battery in real life. If a person's Autism is severe enough that they have no demonstrable comprehension of knowing right from wrong, then isn't it a legal impossibility for them to be charged with a crime? I would certainly hope so.It's hard to see any light at the end of the tunnel working in this field right now. Leading medical ethicists seem to agree that as a society we do a lousy job at providing the resources necessary to care for those with disabilities like Autism. And the ice is getting thinner.

The elder of my two autistic sons turns 18 this month and we are petitioning for conservatorship. The special ed teacher who volunteered to help parents through the process commented that she used to get a few requests a month but now gets at least two a week. The deluge has begun.

The future is what keeps most of us up at night. Who will be there? What will they do? Will they sit at home despite years of expensive therapies and education? We must plan for their futures even when they are young.

BTW, I agree 100% with the Chew observation. Stomach troubles, he's tired, he's too smart for his own good, he needs yet another bike ride that day, let him wear a bathing suit in 20 degree weather to avoid a melt down. What is this all teaching him? The excuses never end and he rules the house. She will be in for a rude awakening when he is 22!

We need to plan for our kids' futures at the most practical level - financially. Regardless of family income level. It's never too soon, and it's not as complicated as you think: http://www.blogher.com/absolutely-critical-planning-future-your-child-special-needs

This is something a lot of parents have nightmares about. My husband has a cousin who suffers from depression and has never been able to care for herself. She is a nice, friendly seems to be perfectly normal person but completely unable to make responsible decision. She's now on disability and living in some sort of nursing home type place. Here's somebody without any learning or behavior type challenges completely unable to cope with the real world. What the H*ll is going to happen with kids with autism. Most can't even get themselves dressed in the morning. Oh God, It's too awful to think about....

Very informative. Dr. Kristina Chew and her minions should read this. No one has more excuses for her child's behaviors and wears bigger rose colored glasses than she does. I feel for her child and his future. Parents like her need to wake up and start planning and stop making excuses for extreme behaviors.

when my son was in highschool, the school put him vocational rehab program when he got out. They told me that they were doing me a great favor!!! They told me that this was a big deal, and not to lose contact with this sate runned program.

Of course he went on to a community college, but I have still kept in contact with them.

They have also gotten us 28 sessions with a psych too. We have wasted 6 of them, but now I am trying to make a list on things that my son needs to work on and the psych I hope can give us suggestions.

One is keeping him out of his room so much. She said to do a graph to let him see how much he is in his room and then do rewards and lots of suggestions.

I think the next go around that would help him in the work force is to find suggestion of how to train him when he makes a mistake. At home when he makes a mistake he gets defensive and angry. At the same time I do not want to teach him to take blame for something that really is not his fault either. Something that happens in the work force - and a person must defend themselves, but it is not to get mad, embarrased and frustrated.

What else would be things to do?

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