What happens to young adults with AS/HFA?

Is there anything a parent can do to develop personal motivation in a teen with Asperger's? My 16yo's focal interest is playing video games (specifically Pokemon and Kirby). Despite our best efforts, he's not interested in learning to program or work with computer hardware. He sleeps in class and doesn't turn in his homework. His test and quiz grades are excellent, but he's not passing some classes because of the sleeping and missing homework. That's jeopardizing his chances of being accepted by the school's vo-tech program anyway. He cries over the situation and is depressed enough to be talking about suicide, but doesn't change.

My feeling is that he's about 10 or 11yo emotionally and behaviorally, and that we're trying to demand a level of personal responsibility from him that he just isn't able to achieve. But chronologically, he's nearly 17 and facing a need to transition from the educational system to real life. (I am delaying that for as long as possible by arranging for him to stay in high school for more than four years.)

This chronological/emotional age split has been a problem all along. I keep hoping that, since he's still making progress, he'll eventually get to the point where he's capable of more maturity, but I'm not sure whether that's just wishful thinking on my part. Do kids with Asperger's/HFA actually get to the point where they're functioning like older teens if you wait and work at it long enough?

What happens to kids like my son? He's not functional enough (and he doesn't have an appropriate focal interest) to become the absent-minded professor type, but he's way too intelligent (IQ above 145) and functional for programs that support adults with classical autism. Everybody tells me that there's a niche in life for everybody, but I'm having a lot of trouble figuring out what his niche could possibly be. It looks to me like he's going to need somebody to take care of some of his needs indefinitely. I wish I knew for a fact that somebody or some program will be there for him at some point.

Sue

Hi Suetois.

You are definitely not alone in your worry for your soon-to-be-adult son on the spectrum. As the thousands of children diagnosed these past years grow up, there is mounting concern over these issues. How are adults with any kind of ASD going to find a place in the world, and lead productive lives? What outcomes are possible? Expected?

There is good news and bad news to be had. First, the bad news. There have only been a few studies to follow up on adult outcomes of children with ASDs throughout the world, and especially little has been done so far in the U.S. The studies that have been done have shown that many adults are struggling and need substantial support (which they often don't receive enough of). Even those with IQs in the normal, or even superior, range are not guaranteed success, as their social deficits handicap them greatly in the workplace and otherwise.

The good news is: awareness of this is growing, and advocates are taking action. In the U.K., the National Autistic Society recently published their "I Exist" report. Although it painted a grim picture of the situation for adults with autism in the U.K., it also spelled the launch of a huge campaign to raise awareness and change the situation:
http://www.think-differently.org.uk/About%20I%20Exist.aspx

There is growing awareness in the U.S., as well, with an increasing focus on adults by advocacy organizations such as Autism Speaks and the Autism Society of America. At IAN, we're working to include adults in the project. Data we collect will likely be useful not just for researchers, but for advocates, because it will help to document the situation of adults with ASD in the U.S.

As we work to design the adult version of IAN, I have been consulting with adults with ASD. One common theme that emerges in conversations among high functioning adults is difficulty in the workplace. College is possible, especially with support from an Office of Disability Services, but the workplace is much less accommodating. Said one 26 year old with Asperger's: "I have learned that I have to work in some kind of government job. The protections for workers with disabilities are not being enforced in the private sector, and I just get 'laid off for personality differences' or 'for not being a team player' with no way to protest. In my current federal job, the law is respected so I can succeed even if I am different."

Paid employment is tied to a lot of other things, like health insurance and living independently, so the adults I spoke with saw this workplace issue as key. Together with this, was a strong focus on supporting "neurodiversity" -- working towards the acceptance by society in general of those who are "wired" differently. An additional issue was making sure other conditions that could interfere with success -- such as ADHD, depression, or anxiety-- were being managed.

Part of what is difficult at the transition to adulthood for higher functioning individuals is just what you pointed out: social-emotional maturity is way behind intellect. There are likely many cases where "IQ" might indicate the teen should be heading for a university, but social-emotional status may indicate that community college will be more than enough challenge for awhile. Extending high school, as you have, makes sense in light of this gap in maturity. Motivation, as you also pointed out, can be another issue. There are many reasons motivation may be a problem, and it may take some professional evaluation to figure out if it's just growing up that is necessary. Is there depression involved? ADHD? A need to somehow tie in a special topic to whatever is being asked? Something else? Or is it just a teenager not ready to come to grips with higher levels of responsibility? This can be tough to figure out.

Connie, many thanks for the time, effort, and thought you put into answering our questions. I really appreciate it. I'll be very interested in the planned research with ASD adults when it's available. The first step in obtaining services is documenting the need. Research into what life is like for adults with autism is critical if today's children are going to be able to access the help they're probably going to need as adults.

I'm also interested in this and we are in same situation. After many years of seeing PDD daughter progress slowly but surely, we are realizing that she isn't going to "grow" out of this. Especially now she's out of elementary, it's a big difference that is plain to see compared to others her age.

Daughter is 15 , but looks/acts like she's 10 (she's small). We are homeschooling now; left after 5th grade in public because she seemed to get further behind in the LD class, which was packed with kids. She's doing better now; she's slow but needs one on one instruction.

I didn't want to have her in middle school; she's very naive. She's really happy doing school at home. No interest in friends, but I hope to get more involved with ASD groups here in town so maybe she can meet others. She has 3 siblings, too.

The good news is she is growing up and getting different interests, which I wondered if she ever would. She didn't really fit Asp. profile of genius with intense specialized interest. For a long time there were no interests except walking around in circles or playing video games. She's a big fan of Dr. Who, pretty decent video game player, loves to watch Ghost Hunters/ Haunted History-type shows,and has an unbelievable Pokemon card collection that she loves to count.

The bad news is, while she has some talents in organizing & cleaning, I can't see her off on her own. She's just not that "with it". We are looking to try to find a home with an apartment in the back yard for when she is on her own.

When we were in public school, our LD teacher had a son who wasn't diagnosed til 6th grade with HFautism. She had him in a group home (he was 24 years old by then). She said he could not live on his own; he had no concept of safety (opening doors to strangers, etc.)
I would never feel comfortable with a group home for my daughter.

There is a book I am reading called Autism Life Skills by Chantal Sicile-Kira that seems quite practical. She also has written a book Adolescents on the Autism spectrum, which provides a lot of advice as well as a list of resources.
There is a lot of inspiration to be found in the book Born On A Blue Day.
I hope these books help.
Personally, I would like to add the reminder to look at your child's abilities, strengths, and what makes them unique. I'm sure there is a lot to build on there.
Stay Positive!