Autism Fact and Autism Fiction
Laura Schreibman is a professor of psychology at the University of California, San Diego, and director of its Autism Research Program. Schreibman discusses her latest book, The Science and Fiction of Autism in an interview, Sorting autism fact, fallacy: Researcher-author wants to clear up misperceptions. She says:
Be careful about what you read and hear. There’s so much misinformation out there, particularly on the Internet. You need to stick with reputable, specific sites, like the Autism Society of America (www.autism-society.org). Parents get inundated with stories, tales of what vaccines or vitamins do or don’t do. They need to be realistic. There is no cure, but there are behavioral treatments that have been shown to be effective in improving the condition.When parents talk to people, when they’re evaluating services, it doesn’t matter so much what helped another child. They need to ask what is the scientific basis for the validity of this treatment. If something sounds too good to be true, I’m sure it is. If somebody promises too much, grab your wallet and run.
When asked if medical science will “cure autism,” Schreibman responds:
There is no single thing that is autism. It’s a behavior-defined syndrome, with many subgroups. ……
I am optimistic that some day, but not in the near future, we’ll untangle this mess. But any cure is way, way off.
The kind of “behavioral treatments”–ABA–that Schreibman refers to have been highly effective in teaching Charlie many things from talking to riding his bike to reading. However, I am not quite sure what Schreibman means by the word “mess”; I gather that she is referring to the current questions and controversies in Autismland, from the best treatments for autism to the diagnosis of it.
Fortunately, I have an insightful guide in thinking about Schreibman’s book and “this mess.”
James T. Fisher (aka Charlie’s dad and my husband) reviewed Schreibman’s book back in February, Strange New Worlds: Review of Laura Schreibman, The Science and Fiction of Autism in Commonweal Magazine.
Jim writes:
Schreibman’s contention…… that autism “science” and “fiction” may be neatly separated is somewhat misleading, as is her method. She devotes considerable space to debunking long-discredited theories, employing the present tense, for example, to describe psychoanalytic treatments devised by Bruno Bettleheim in the 1960s that were exposed years ago as a cruel hoax. She also largely ignores the interdisciplinary quality of much new autism research, which reflects how deeply this condition is grounded in relationships: between different sections of the human brain; between genetics and the environment; between autistic ritual and narrative meaning.
Schreibman correctly notes that “autism isn’t a disorder where parents can sit back and hope things will just get better or that the professionals will do it by themselves.” That Jim and I have learned to become therapists, teachers, advocates, and more for Charlie is Autism Fact. But I do not understand Schreibman’s claim that, when a parent is looking for ways to help their child, “it doesn’t matter so much what helped another child.” We autism parents need–rely on–constantly learn from—other autism parents (as fellow autism parent Brett Miller’s Autism For Parents displays).
That is definitely Autism Fact, never fiction.
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POSTED IN: Books, Diagnosis, Education, Family, Psychology, Science, Treatment
6 opinions for Autism Fact and Autism Fiction
Joseph
May 24, 2006 at 11:26 am
There is no cure, but there are behavioral treatments that have been shown to be effective in improving the condition.
As I usually point out, the second part of this sentence is not actually true, even though it’s stated often.
Kristina Chew, PhD
May 24, 2006 at 11:48 am
Autism fact and autism fiction sometimes (often?) seem to be one and the same.
Regan
May 24, 2006 at 12:14 pm
Perhaps, since I have not read the book, what Dr. Schreibman is referring to is not taking something that another parent says is working for his/her child entirely on faith, or using it whole hog without careful consideration of whether it makes sense for one’s own particular child.
I read alot of stuff and hear alot of stuff. When I do try something I have to be very objective that I am really seeing what I may think I am seeing or is it something else or even no difference.
Kristina Chew, PhD
May 24, 2006 at 12:32 pm
I do think that is what Prof. Schreibman is suggesting and she has certainly been working in the autism field for a long time and must have seen many treatments come and go. And I do find that, as a parent, it is often, one’s feelings and worries can cloud one’s judgment.
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wendy
Jun 7, 2008 at 4:49 pm
Thank Heaven, somebody has finally dared use the word, Fiction where “treatments” or cures are concerned! My daughter is 29, and we did live thru the “Refridgerator Mother” accusations, and many more that were psychologically based, that tried to accuse us as parents of causing an inborn disability.
Luckily as parents, we had both had a relative, with mental illness wso we came “pre-pared” to accept some differences, and not accuse, as we’d lived thru the diversity that is the human range. That helped a lot.
As for intervention, we had many and special schools, and Medicaid, which paid for extensive programming in a large city, where medical research was taking place. That said: we still had to make constant revisions to what the experts asserted could or would cure or ameliorate symptoms such as severe hyperactivity, self abuse, echolalia, (Arggghh, if that doesn’t work your nerves, I don’t know what does), and many others.
It is a team effort and no more important team members than those who live with the afflicted person. Sometimes it’s parents, or grandparents, sometimes the person is in a group home, for a variety of reasons. I’ve known many kinds of living situations, and seen many different approaches; some rigid, some regimented but consistently kind, others that were intrusive or even abusive.
For us, with our child, good common sense, a full time homemaker who devoted a huge and irreplaceable amount of time and attention, along with good programming, (but not necessarily great programming), and altering the home when needed, my daughter is now a beautiful young woman who attends college classes and an adults only day program. She is happy, healthy, speaks, eloquently very often, she is charming, often engaged with guests, informative, attentive, and talented.
She swims, cooks, cleans even, ice skates, sings and plays guitar a little. She’s an artist and even has political opinions. She’s fun and I enjoy living with her, but don’t make a mistake, she still needs supports, and is not quite safe in the world to a point that would allow her to live on her own.
That will never happen, I can see that much, but she certainly has come light years from the early symptoms of her disability with a lot of help. She is still aware that she is different, and recognizes that she is very stressed as she says, about her daily existence.
I liken it to living in a world where everyone speaks another language, and while you may feel capable and interested, it is hard work to get thru each day for her, and while she learned how to manage, and continues to add new strategies to her repertoire she is still something of “an outsider, in her own land”, and that may be the most salient factor no matter how much she learns or how good she gets at dealing with the world around her.
I wish all of you the very best of luck, time and energy, and for those who have a relative or neighbor or friend who is struggling with a child or adult with Autism, please give them the support they need, in order to serve this person who is trying so very hard to deal with the unfortunate exceptionality.
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