Expert: Trey McGowan - 4/12/2009

Question
Hi Trey,
I'm a mother of a young man with Asperger's. I'm also a special ed consultant with a school district and am currently working on a Ph.D. in autism. I'm one of the other autism experts @ AllExperts.com. I'd appreciate your thoughts on two areas, please.

1. My son attends university and lives on his own. Unfortunately I'm not sure this is the norm for young people with high functioning autism and Asperger's. What do you see as getting in the way of more independent outcomes?

2. I also need some help please for one of the classes I'm taking in my Ph.D program. Could you tell me what sorts of things in your experience families, teachers and/or counselors spend money on related to AS and autism? Which books and other forms of services do you feel are bought? What gaps are there that need to be filled?

Thanks for your thoughts and your time,

Sharon


Answer
Hi there, Sharon!

Hopefully you can excuse the delay on this answering. In between an extended cable outage and a busy midweek, I've been scrambling to catch up with a lot of stuff!

As I tend to do, I'm going to go through the questions and answer them in order.

First off, the question about your son. While I wish I could give a clear cut-and-dry answer to this, it's rather difficult for one main reason: there are a number of levels of autism and Asperger's, even among 'high-functioning'. Some children can learn to adapt to specific difficulties. Some of them can't. However, one thing that I have found is that the biggest help toward getting a child with ASD into independence is having a parent who is understanding and willing to support them, rather than shy away from their difficulty. Your own knowledge in being special ed consultant and no doubt the lifetime of studies you've had on the subject (or at least your son's lifetime) has put you in this position, making it a lot easier for you and your son to both adapt to his unique difficulties. So, to make a long story short, in the situation that your son is in, it definitely seems as if it would be 'the norm'.

The second part of your question is asking about the difficulties that can come in between himself and more independence. Some of the most common problems are the social and communications difficulties. The rest of the world (bar a small percentage) speaks a completely 'different language' than the average ASD youth, leaving them feeling very confused, scared, and isolated. Depending on the job that they are considering getting into, this can be crippling. Dreams of working closely with people may become nightmares, for example, and having to speak to or even confront the boss can be too much. In addition, money and value itself can be mystifying for even high-functioning autistics, leading them to financial difficulties. This can be crippling for some, and lead to a great deal of trouble with independence.

While those are the biggest issues toward independence, there are a few other, more minor ones that I can think of as well. For example, among ASD individuals, personal hygiene can be forgotten about for long periods of time. The reactions of other people to this lack of hygiene can be very negative, thus contributing to a low self-image and social awkwardness. Caring for and cleaning up their home and workspace can be similarly impaired. Meltdowns, while usually fading away in older years, can still occur, and can be difficult to recover from if one hasn't got an understanding boss who will let them 'sit it out' for ten minutes.

Now, please don't think I am saying an ASD individual can't live independently! Many of them throughout life have gone on to do great things, despite (or even because of) their unique situations. All of these issues are things which can be worked around, and even if they may not be able to live 100 independently, they can make it through with the assistance of therapists, bankers, cleaning services, or any number of paid assistance that even the neurotypical will turn to to get through their day!

This leads me down to the second part of your question: what teachers and counselors spend money on when it comes to ASD. Not having been a counselor myself, I can only make educated guesses from what I have gone through as ASD, and what I have picked up from research.

The first thing many will spend money on is a library of books to 'get into the heads' of those who are ASD. Textbooks, educational books, et cetera. I don't have any particular titles that I could offer, but not all counselors and teachers have the direct knowledge of these things, so they need to get it second-hand a lot of the time. I understand that you are hoping for more specific books, but I can only give my own personal library, and they are for 'me' reading rather than from the educational system:

http://www.templegrandin.com/templegrandinbooks.html
All of Temple Grandin's books. She is a Ph.D who is diagnosed autistic, and has gone above and beyond that to carry the message to the world. She, as an author and speaker, were recommended to my mother by our psychologist when I was first diagnosed, and her works are easy to read and digest. I can't suggest it enough.

Other important spends are actual teaching aids for students who are autistic. Depending on the age of the students that the teacher expects to deal with, this can be special picture books, pamphlets, computer games, and specific toys. Fortunately, nowadays there are many sites which sell these for a low price, or even give them away for free, so long as one has access to a color printer.

Which brings me to another important expenditure: a computer and good color printer. The main reason for this being just as mentioned above: there is much support all over the world for those teachers who work with autistic children, but without the connection, and the way to be able to print out the activities offered, they can't be properly accessed. This goes for families as well: the children and parents themselves may want to reach these educational sites directly, but can't do so unless they have the connection to it.

Now, I haven't been in school for many years, and so my knowledge of what is paid for and what isn't is fairly incomplete. Thus, while I wish I could help with the 'gaps in education' part of the question, I have to defer to those who have had children in school, or their own personal selves, in more recent years. I can, however, speak from personal experience on a gap for families: educated therapists for adults. There are extremely few who are trained specifically in dealing with older autistic individuals, and while children are getting fairly well-represented, teen-agers and adults with ASDs end up slipping through the cracks without any support or aid. There is an enormous gap for those people who will work with adult autism.

Hopefully I was able to answer all your questions to satisfaction! If there's anything else that you need summed up, or more detail in one of the parts of that answer, feel free to ask. And as always, additional questions, comments, feedback and follow-ups can be directed right here! Now with less cable outage. ;)

Trey