College Bound and Living with Autism

New York Times (April 20, 2011)- 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 free online 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.

To read the entire article about living with autism long-term click on the title.