Expert: Ettina - 4/12/2009

Question
Hi Ettina,

I'm a mother of a young man with Asperger's. I'm one of the other autism experts @ AllExperts.com and currently working on a Ph.D. in autism. I'd appreciate your thoughts on two areas, please.

1. My son with Asperger's 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 preventing them from having 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? Are there gaps in the information they can currently find?

Thanks for your thoughts and your time,

Sharon


Answer
In terms of features of high functioning autism, I'd say that it's mainly executive dysfunction that interferes with independent living. Poor sequencing, poor sense of time, difficulty shifting attention, and so on makes it hard to manage all the things you need to manage to live independently. Other things, such as sensory or motor problems, can also interfere with self-care, but the biggest issue is organization.
The lack of recognition of these problems makes it worse. If AS/HFA teens were explicitly taught strategies in time management, organization, etc, they'd be much better prepared to live on their own. As it is, though, many people don't realize these kids don't know how to live independently because they can function fairly well if they have the cues that parents typically give them. For example, I'm prone to loosing track of time and forgetting to eat, but it's hard for parents to notice this kind of issue if they typically eat meals with their child, because a meal being prepared, set out and announced ('dinner's ready') is an excellent cue that it's time to eat. And many parents give reminders to their kids while probably not realizing just how much more dependent an AS/HFA kid is on those reminders than a typical kid.
And there's the tendency to view high functioning autism as if it's a completely different condition from low functioning autism, when in fact they are on the same spectrum. This means that there are autistics who don't fit neatly into either high functioning or low functioning - for example, Donna Williams, an Astralian autistic author and speaker, has said that at best, she typically only understands about 70% of what people are saying to her, which is a significant communication problem. It's possible for autistics to have very significant issues in certain areas, including self-care, and still be considered high functioning. Some of these people may not be able to learn certain self-care skills, no matter how much they try, and yet still be quite intelligent and capable in other areas. Difficulties in nonverbal areas are especially likely to be overlooked, and unfortunately those difficulties are also the ones more likely to affect independent living (if you live alone you could be completely unable to speak and do just fine, but if you can't recognize things visually you'll have big problems).

As for your second question, it seems to me that a lot of money is spent on trying to figure out what causes autism and on treatments to make kids seem less autistic, and not nearly enough on things like how to design an autistic-friendly environment, particularly for adult autistics. But I'm not really sure, that's just what I've noticed in terms of what books are available and what people tend to lobby for.