Where have all the flowers gone, long time passing?
Where have all the flowers gone, long time ago?
Everywhere you turn, you hear about "rescue," "recovery," and "cures" for ASD. There are lots of heartwarming testimonials, and lots of snake-oil vendors eager to sell you their products, but there are no randomized controlled studies of anything, to show that ASD is curable, or to show that the long-term outcome is different from what would have happened via natural history alone.
The most intense features, such as flapping and spinning, echolalia, and panic in response to changes in routine or sensory overload, gradually fade, with or without intervention. Leo Kanner first documented this in 1943. The higher the IQ, the faster and more completely the symptoms fade; this has been summarized in my own research. In order to establish that a given therapy alters long-term outcome, one would need to show that the child is more improved than would have been the case just by passage of time. Nobody has ever done that, for any therapy. Wouldn't that kind of research be unethical? A good question. On the other hand, what are the ethics of promising a cure without proof, and billing a family tens of thousands of dollars? We wouldn't need to have a "no treatment" group. We could compare treatments "A" and "B," or 20 hours per week of "A" versus 30 or 40, and so forth. But it's never been done.
Alas, there is another, deeper problem with claims of cure: Adolescents and adults who have "outgrown" their ASD diagnosis are still plagued by a host of non-ASD neuropsychological disorders: anxiety, depression, bipolar disorder, and the susceptibility to alcoholism. This is not "cure."
The figures show what I'm talking about. You saw the first of these figures in Post 16: a neurodevelopmental "iceberg," with ASD at the tip. These are the children who come to see me in the office, for initial diagnosis. When I look in the family history, I usually find that one or both parents have some combination of the issues that are "below the water line" of that first iceberg; anxiety, depression, or some other mental health issue.
The second figure is based on long-term outcome studies of adults with a childhood diagnosis of ASD, and shows the same disorders. The "tip" of the iceberg (ASD) has been worn away, but all the issues that lie beneath the waterline remain. References for both of these figures are listed in my book.
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Are you an adult with ASD? If so, this thread is a place where you can post your story. But please remember: I have created this thread with a specific purpose: To help parents of children with ASD. There are lots of other places where adults with ASD can get together to chat.
If you are an adult with ASD, or a former diagnosis of ASD, please tell us:
1.How old are you?
2.Are you male or female?
3.How did ASD affect you as a child?
4.Do you consider that you still have ASD? If so, how does ASD affect you now?
5.Do you have depression, anxiety, or other mental health issues? If so, are you getting help?
6.Are you in a long-term relationship, and if so, how is that working out?
7.Do you have children? Any of them with ASD or other issues?
8.Are you employed? If so, are you employed up to your full level of ability?
9.Anything else you would like to add?
(PS: I know this is not a random sample of all grown-up children with ASD. But it's the best I can do under the circumstances. Just as we need decent door-to-door prevalence data, we also need decent long-term outcome data, on a representative sample. But this kind of research isn't "sexy," and doesn't get the funding or attention it deserves. Also, in America, right-to-privacy issues interfere with maintaining long-term mental health records on the entire population.)
Thanks.
