News Alert: College-Bound and Living With Autism

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College-Bound and Living With Autism

Darren Hauck for The New York TimesJudy Endow, an autism consultant, learned that she had autism only after a doctor noticed the condition in her son; she is among those featured in Patient Voices: Autism.

Several readers of the Consults blog recently had questions about the long-term course of autism, including succeeding in college and beyond. Our experts Dr. Fred Volkmar of the Yale Child Study Center and Dr. Lisa Wiesner, co-authors of “A Practical Guide to Autism,” respond. For more on this and other topics, see their earlier responses in “Ask the Experts About Autism,” and The Times Health Guide: Autism. The authors also teach a freeonline course on autism at Yale University, which is also available at iTunesU and on YouTube.

Q.

Are you aware of any longitudinal studies of occupational outcomes and successful (independent) living for high-functioning autistic adults? Where would I find those? Are there particular strategies that should be pursued in high school or college to enhance the likelihood of success in these areas?
Kathy Patrick, Houston

Q.

Can you tell us what the distribution of children and adults on the spectrum looks like, i.e., what percentage of autistic children and adults are nonverbal, college-bound or college graduates, of below-average or above-average intelligence, etc. There are so many stereotypes, from dot-com entrepreneurs to self-injuring children, that it’s difficult to grasp what autism “looks like.”
Rob, Oakland, Calif.

A.

Dr. Wiesner and Dr. Volkmar respond:

Several readers had questions about the range of adult outcomes in autism and how treatments may affect outcomes in individual children. This is a very interesting and complicated — in a happy way – topic, because it seems like things are improving on balance, though not for every child.

More and more individuals with autism are now able to function independently as adults. This is a major change over past decades, probably reflecting earlier diagnosis and more effective treatments. There is a very good summary of this in a chapter by Patricia Howlin in the Handbook of Autism (2005, Wiley).

Unfortunately not every child gets better. Sometimes the outcome seems to relate to the severity of the autism in childhood. Individuals whose disability is more profound continue, as adults, to need considerable support and help. It is unfortunately the case that for this population, services are often minimal, research is sparse and resources are lacking. The federal government has identified this as a priority area in autism work, and rightly so.

But even when we are fairly optimistic about an individual child, he or she may not do well as an adult. This is one of the reasons those of us who have been in the field for a long time are very careful about predicting the future to parents. We can only talk, in general, about what on average are good or bad prognostic factors.

For individuals with autism who can go on to college, a number of resources are available on the Yale Child Study Center Web site, including books and links to programs. Options range from small and very supportive programs specific to individuals with autism and related disorders, to traditional colleges and universities. Our book, “A Practical Guide to Autism,” also has a chapter on the topic of adults and discusses college services.

Daily living and adaptive skills, along with organizational skills and abilities, become even more important during the college years. It is important that students and parents realize, though, that changes in the law (the Americans With Disabilities Act  now applies to such children) mean that college is not a right, and that those with autism can and do get expelled. Issues relating to sexuality and apparently inappropriate behavior are frequent reasons cited.

Q.

I have a daughter with Asperger’s. She is currently a college senior. She wasn’t diagnosed until she was 16, teachers and school psychologists having told us over and over that she was “eccentric” or “different” because she was so smart. (She has a near-genius I.Q.) Once the diagnosis was made, however, and a combination of medication (antidepressants), therapy and in-school social instruction were put into place, all the difference was made.

But knowing was a big boost her her self-esteem. She knew she was different, but she didn’t know why. To commenter No. 21, we made the decision to tell her teacher and some of her classmates. That made a huge difference for her as well. They understood why she said and acted the way she did. You have to take on the responsibility of many things for your child. Be proactive. Insist on things being done. Do your own research. Be a strong advocate for your child and don’t back down. Public schools have too many kids and not enough time or money. But she needed the socialization, so it was definitely better for her to stay in school and not be home-schooled.

Now we face a whole new struggle. Once she graduates, how does she get a job? People can’t help but be prejudiced, legal or not, if she tells them before she’s hired about the Asperger’s. But she definitely has to let them know, because they must be blunt with her. No hints. She’s very black and white. How does she deal with a potential employer? She has all this knowledge stored up, all this intellectual ability, but who is going to help her socially? Her I.Q. is so high, the “normal” channels refuse to help. But she’s 22, she can’t live with us forever. (Nor does she want to.) What does an adult person with Asperger’s do?
proegge, Kansas

A.

Dr. Fred Volkmar responds:

Your question raises several important points. Individuals with Asperger’s sometimes do receive a diagnosis much later than children with autism — a point Dr. Asperger himself originally made. Better verbal skills “mask” the other areas of vulnerability, including social, organizational and nonverbal cognitive. As noted, often when the correct diagnosis and a sensible treatment plan are put into place, people do much, much better. Sadly, also as noted, the issue of what comes after college is not well addressed in the literature.

Paradoxically, there is rather more work on the much more cognitively disabled students. As a general rule, one should try to find a vocation that is a good fit for the person. For example, jobs stressing skills that are fact-based, structured and rule-governed, with explicit rules, and that minimize social interaction can be ideal. Computer-related, science-related and similar fields can be a very good fit.