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Autism - Education or Not

Expert: Sharon A. Mitchell - 10/27/2009

Question
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

---------- FOLLOW-UP ----------

QUESTION: Expert   Sharon A. Mitchell
Subject   Education or Not
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.

He has received a lot of help from us due to his eating situation. He has Celiac disease and is severely allergic to the normal foods. So you are right, he has been over-helped.

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:

These are all available to him at his Community College but he refuses to take advantage of them because he doesn’t want to seem different.

- 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.

When he was at Northern Illinois University, a signed letter from him allowed us to email teachers with questions. One teacher went as far as to email me and tell me they were concerned because he hasn’t been in class and the last time he saw him he did not look well. This was from not eating properly. He had trouble catching the bus to go to the grocery store so he just decided not to eat.

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

I couldn’t answer this truthfully without asking him and he said he wants to be in college but it is too hard with a job as well.

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.

This became very evident at NIU where he became overwhelmed and just stayed in his room.

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.

In order for him to continue on our insurance they insist that he carry 12 hours.

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?

I asked him and he said his goal is to be successful and support himself.

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?

Yes, it seems that a part-time job and school is too much. Is he taking a partial load? Yes, he is only taking 4 classes. 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 had two friends, one of which he is still friends with. No girlfriends.

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

Computers are his life right now. When we put him in computer classes though he did very poorly and we had to pull him out with a medical course load reduction.

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.

I would like to hear about some of those please.

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?

The IEP states that there is a consideration of needs, goals and support services required. A special class, separate schooling or removal from the regular education environment is required because the nature or severity of the student’s disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.

Post High-School goals: Jason hasn’t defined a formal career goal at this time, but is considering a job in the computer or technology field. He plans to enroll in community college, purse competitive employment and establish his own residence.

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.

This has been a huge struggle. Even learning how to feed himself with Celiac disease and take his calcium are daily struggles.

I wish I knew in which state you reside
(IL)
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.

This is very good information we were not aware of that. Thank you.

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.

This sounds just like him however he is adamant about getting his own place.
Do Asperger’s young adults have trouble with holding on to their money and learning how to budget?

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?

He is responsible for taking out the garbage and recycling on Sunday, Vacuuming and keeping his room and car clean.

Does he pay for his own internet usage?

No, but if he goes over his established limit, we then bill him for that.

Does he earn any spending money he might require?

Yes, he works 4 hours, 5 days a week.

Does he pay you something for his room and board?

Not yet, he barely makes enough to pay for gas.

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?

He is currently on Risperdal and Focalin. The doc doesn’t think he is depressed just frustrated with the way things are turning out.

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.

If we were to push him gently toward being on his own, how would that be handled? He can't make enough money for rent and all the other things that go along with an apartment. Do you go through Social Security, Disability, Welfare…we are very confused and there seems to be little help for them once they need to be on their own.

Thank you so much for your time and insight. I look forward to hearing from you again. Good luck with your book.

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.

I apologise, this was done in word with all my answers in a different color however when I pasted it, the colors don't show up. Your information was excellent.

Answer
There are so many things involved in living away from home, aren't there? Even think about taking the bus for groceries. Buses can be smelly, crowded, swaying vehicles that overwhelm the senses. An alternative to cooking for yourself at college is staying in a dorm where the cafeteria prepares all the meals. But dorms present a whole other set of problems with all the social complications of being around a group of people. Some students with Asperger's do all right in dorms; others prefer the quiet and privacy of solitary space.

Leaving high school with all its structure and familiarity, moving away from home plus trying to learn how to succeed at college is a lot of cope with all at once. Is there a way your son could remain living at home with you yet attend classes locally? Then the worry about grocery shopping or eating properly for celiac's would be eliminated.

I can see why your son felt that holding down a job and going to school at the same time were difficult. Many typical students would feel the same way. Perhaps he would be able to handle one or the other but not both. That involves a lot of juggling and time organization. Plus, since holding it together and concentrating appropriately are difficult tasks for people with ASD, he might require more down time than the average person. His job might not have allowed him sufficient breaks from his work load.

Does your insurance understand that your son has a disability? Did you approach them to see if there are exceptions to the 12 hour rule for dependents with disabilities? Perhaps the Autism Society of America could offer you some guidance or suggestions about this.

Would the Center for Access-Ability Resources have any suggestions for you on ways to get around the insurance restriction? http://www.niu.edu/caar/

Possibly this article would also help: http://www.idfpr.com/DOI/pressRelease/pr08/AutismFactSheet.pdf

What kind of computer classes was he taking? There is a big difference. I described in my previous answer the type of computer courses my son took in his first year of college. His second college certificate was centered around technical issues - repair of hardware and software, networking, etc. It was quite different than his first program (computer graphics, animation, internet design). What he's now taking at university is in the computer programming/software engineer field, different yet again. Even within the programming classes, some he likes far better than others. Some are to be tolerated and gotten through as they're prerequisites to the more interesting classes.

From your description of his IEP, I gather that your son did not attend regular classes with typical kids. If that's true, than the leap to college must have been particularly hard on him, the environment and expectations quite different. It must have felt like the rug was pulled out from under him after having experience only in the more sheltered environment.

Yes, many adults with Asperger's definitely budget their own money. Again, though, it's likely a process.

I'm a bit stumped in what to suggest to you. My person experience has been different from yours. As the special ed consultant in charge of my son's school, I made certain decisions all along the way. Even though he was eligible for services, he never saw a special ed teacher, received no services and was in all regular classes. Yes, it was rough - on him and on us. But we were not concerned with his marks; to us it was more important that he learn strategies to manage on his own. We worked with him at night on strategies but not on homework; that was his responsibility. Were his marks stellar? Not at all. Would they have been higher with extra help and would he have been more comfortable? Likely. But at 17 he was able to drive 45 miles a day into college to complete a certificate course in the regular amount of time. It was scary for us as parents and there were tough times. Living at home made it easier for him as he had only the schooling and driving part that were new. By the time he was 19 he was living alone in an apartment, handling his own bills and money. That did not happen overnight though. And I know that the choices I made for my son's school career are not those typically chosen by parents of kids with Asperger's and autism.

But where do you start now? Well, I'm not sure going to school and working at a job can be done, at least at his current stage in life. One or the other is hard enough.

He sounds motivated. Would it be possible for him to live at home with you and take classes online on his own? Even taking just one class and passing might boost his confidence. I see that NIU has some online courses (http://www.niu.edu/academics/online/index.shtml). There are other universities that offer full degrees online. Here's one that I know of that specializes in computer offerings: http://www.devry.ca/. If you do an online search you'll find many distance learning opportunities for someone who is self-directed and enjoys time on the computer.

I'm afraid I'm not up on social security in Illinois but here are a couple links you could browse:

http://www.disabilitysecrets.com/

http://disabilityblogger.blogspot.com/2006/09/social-security-disability_1159304...

Here are a few other places you could look for information pertinent to Illinois:

- Advancing Futures for Adults with Autism http://www.theautismprogram.org/documents/AFAA%20RegistrationFlyerChicagoFinal%2... (this is coming up Nov. 13th)

- Illinois Center for Autism http://www.illinoiscenterforautism.org/

- Autism Society of Illinois http://www.autismillinois.org/

- The Autism Program of Illinois http://www.theautismprogram.org/

- Autism Spectrum Institute http://www.autismspectrum.ilstu.edu/

Although such organizations serve many families with younger children, these kids grow up and surely some have experience with young people in situations similar to your son's.

Here are some stories of young people with ASDs who are attending college:

- http://www.npr.org/templates/story/story.php?storyId=94429083&ps=rs

- http://www.autismfamilyonline.com/public/332.cfm?sd=2

- http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2009/08/04/EDPN193F67.DTL&type=...

- http://abcnews.go.com/Health/story?id=6433034&page=1

- http://www.services.unimelb.edu.au/edp/downloads/aspergers.pdf

I truly believe that young people with Asperger's can and should become independent, self-supporting individuals. The path they take to get there may look different and the time line may differ from that of others their age, but it is possible.

Best wishes,

Sharon Mitchell

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