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Autism - Education or Not

Expert: Sharon A. Mitchell - 10/26/2009

Question
Hello, we have a 21 year old son who has failed one college and now is failing community college. He did excellent in high school because we kept on pushing him and the IEP helped tremendously. Now he has trouble holding a job. We don't know what to do for him. He will be 22 soon and still living at home without income, without friends or girlfriend and just staying in his room with the computer. How do these young adults make it in the real world?

Answer
What a worry for you. It's a lot harder when a child grows up, when so much is no longer under your control.

I'm working on a Ph.D. in autism and my main interest is in why some high functioning young adults with an autism spectrum disorder (ASD) go on to lead independent lives but many don't. I know this is not a popular view, but I think that far too many have been "over-helped". It's done out of kindness and trying to be helpful, and while it does get such students through high school, their success stops there.

Or it might. It does not have to.

I'm rereading what you said about your son. He did well academically in high school you say because of the IEP assistance and because you pushed him. It's great that he complied and went along with the efforts of the adults in his life. Having a high school diploma is so very important.

But what happens now? Unfortunately you can't go with him to his college classes and the accommodations offered through his IEP may not be available now. But some still are. The kind of accommodations colleges might offer to young adults with disabilities are:

- tutoring
- extended time on exams
- a quiet place to write exams
- a reduced course load
- technology such as computers, voice recognition software, programs to read texts to him
- counseling

To learn about what might be available at his college, contact the office of disability services. This office is called by slightly different names at some colleges but there should be some advocacy group on campus to assist adults with disabilities.

But this service is only available to the student. Generally such office will not speak with the parent other than in a very general way. They see college students as self-determining, with a right to privacy. If you went to the office with your son and he signed a waiver allowing them to speak with you, then you might be able to be more involved.

This is pre-supposing that your son WANTS to be in college. Does he?

I don't mean to sound harsh, but sometimes it is our dream as parents to have our children college-educated. At the post-secondary level this doesn't work when it's our goal. While it may be possible to get a student through high school on his parents will-power, seldom does it work with people in their twenties. College is hard work and without the interest and motivation to be there it is very easy to drift off. Unlike high school, no one checks up on you or rides you about assignments.

Another drawback to college is that it takes a long time to complete. Four years can seem like forever or even the two years to complete an associate degree. The time-frame is even longer if the student takes just a partial load.

Let's look at that. College requires a complex set of skills. Not only is there the academic rigor and knowledge to be picked up but in order to attend class, do the independent reading, keep track of multi-step assignments and meet all deadlines the student needs to have developed sets of skills. Executive functioning is a weak area for most people with ASD, so college presents a whole host of challenges. Not insurmountable challenges but it will definitely be harder than for a typical learner.

Think about how many students enter college each year but drop out early. Many. They get overwhelmed by the work load, miss assignment and exam dates, get behind in classwork, get discouraged and feel it is just not worth it.

A normal course load is often five classes per semester. For some kids, this is just too many things to juggle at once. This is especially true when you consider that a kid with autism is likely working far harder than anyone else in his class to pay attention, to ignore all the distractions (both internal and external), to find the correct room, to deal with the jostling crowds and any social interaction and to hold it all together.

At some institutions, a student is still considered full-time if taking just three classes per term. And students with disabilities may be allowed to take just two each semester. This may be a more manageable work load even if it does take a long time to complete the degree this way. Perhaps slow, partial success is more important than getting through quickly.

Many people with autism have interests in certain areas, but for a liberal arts degree you are required to take a sampling of subjects in many areas, areas that may have no bearing on what really interests the student. For a kid with autism, this may make no sense and be harder for him to persist with topics that have no bearing on anything he might ever like to do. Often the variety of subject required are ones that are taken in the first year or two of school and it's not until the upper years where the student gets to concentrate more heavily on what really interests him.

Does your son have a goal? If he has a real passion for say engineering, then he may persevere and take whatever he needs to wade through to reach his end goal of getting a job in engineering.

Is he not doing well now because college holds little interest for him? Or could he be having trouble at the community college because he is discouraged? Is he overwhelmed? Is he taking a partial load? Does he even know that he can?

You mention that he's home without friends or a girlfriend. Is that something new for him? Did he have friends and a girlfriend while in high school?

He's spending time on the computer. Is that a real interest of his?

Temple Grandin, probably the most famous person with autism, really believes that you need to do what you can to turn the person's special interest into a future career. She also believes that this career will be the vehicle for a social life, working with people who have similar interests.

If your son like computers, that is a fine field to get into. There are computer-related jobs that require university degrees and some that can be entered without that piece of paper.

During your son's last years in high school, what did his IEP say about transitions? What type of future career planning did it involve?

My son has also had computers as his primary interest most of his life and a university degree in programming was his ultimate goal. But that was a big leap when he finished high school so he took a circuitous route. He first attended a community college for a one year program dealing with computer graphics, animation and website design. He finished and earned the certificate. Next he took a two year computer course and also completed that. While the first course involved staring at a computer all day, the second had more varied requirements to wade through. After that he switched to university, taking a reduced course load. He thinks the college experience prepared him for the demands of university and he felt success along the way.

I regularly check in with a lot of online forums for people with Asperger's and high functioning autism. I learn a lot from the articulate adults there and we talk about what helps some to be more independent than others. Interestingly, some of the adults there think that while their life is not without struggles, they think they are self-supporting and have independent lives because they were never diagnosed as kids. (Asperger's diagnoses only became common in the 90s). Without the extra help that such kids now receive, these adults struggled through on their own and developed the skills they needed to manage.

You say, "We don't know what to do for him." Your choice of words is telling when you say "for". I'm not sure you can do anything "for" him now. Instead, you might be able to help him learn to do something for himself.

I wish I knew in which state you reside so that I could give more specific suggestions but you should be able to do some online research to find government agencies that assist with career planning. An online search for "career test" will bring up a host of free tests your son could do to look at what possible job choices might interest him. Try your local branch of the Autism Society of America to find someone in your area who may help.

Once your son knows what area interests him, try to arrange some job shadowing where he could actually go spend some time (if only a few days) watching someone do their job. If the jobs require college education, contact colleges to see if they have a "be a student for a day" program so he could get a sense of what that course involves. It's very hard to persist in college without an end goal in mind.

But what if your son is not interested in a job or in college? What if he's currently doing exactly what he wants to do? Remember that some people with autism have a poor sense of time. Days and weeks and months could go by with him in his room on his computer but he would not realize just how much time had elapsed. He might enjoy the narrowness of his world and lack of demands.

Think about the reasons why any of us go to work. Sure, some people have a job that wholly fascinates them but most of are not that lucky. Even when we like our jobs, many of us have those mornings where we'd just as soon stay in bed. We go to work regularly because we have to. We need that pay check. Other people depend on us. We have responsibilities.

What responsibilities does your son have? Does he pay for his own internet usage? Does he earn any spending money he might require? Does he pay you something for his room and board? While a typical 22 year old might realize that he should not live off his parents, a kid with autism may not even have thought about that. You may need to guide him in that direction. This could mean putting gentle demands on him and making him uncomfortable. You don't want to throw his anxiety levels through the roof but he should know that the status quo cannot remain. He must do something - either school or a job.

Maybe he can't hold down a full-time job but not working at all should not be an option. A boring, menial job can be an impetus to get some kids back into school now that they see what their work life could be like without a college education.

If hanging out in his room alone is new for your son, is there a chance that he is depressed? Does he need medical attention, counseling or possibly medication?

Some people with ASD crave normal social interaction; others don't. Sometimes a parent's idea of friends is not what the child wants or needs. Total isolation is not good but the level of socialization for some adults with ASD differs from what we might see as the norm.

You might find it useful to read some books written by adults with an ASD. Here are few that I like:

- Freaks, Geeks and Asperger Syndrome (http://tinyurl.com/yzlqhd4)

- Developing Talents: Careers For Individuals With Asperger Syndrome And High-functioning Autism- Updated, Expanded Edition (http://tinyurl.com/yz47k5d)

- Your Life is Not a Label (http://tinyurl.com/yzxu6cy)

- Pretending to Be Normal (http://tinyurl.com/yzp7jzc)

- The Way I See It (http://tinyurl.com/yj5ouky)

These books might give you some insight into how others with autism have "made it" in the real world.

I'm interested in your take on this. For my Ph.D. I am writing a book on ways to encourage independence in kids with high functioning ASD. I would appreciate any insights you'd care to share.

All the best,

Sharon A. Mitchell, B.A., B.Ed., M.A., Ph.D. candidate
www.autismsite.ca

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