Thursday, October 23, 2008

Autism speech for Toastmasters, a transcript

Here is the transcript of a speech presented in October 2008 before Toastmasters Club 8731, the Tenacious Talkers in Lake County, Calif. The title of the speech asks, Is There an Autism Epidemic? In it, I argue that expansion of criteria and improved methods of detection account for the increased prevalence of people on the autism spectrum. “We are seeing more cases of autism because we are learning where and how to look.”

Offscreen voice: It's catchy! Speaker: Yeah! SPEECH BEGINS: Various sources [00:00:05] document that in the early 1990s, autism diagnoses [00:00:10] increased dramatically. I found a statistic [00:00:15] on, that between [00:00:20] 1993 and 2003, the number of American school [00:00:25] children being diagnosed with autism increased by [00:00:30] more than 800 percent. The Centers [00:00:35] for Disease Control released a finding in 2007, that nearly one [00:00:40] in 150 eight-year-olds have an autism [00:00:45] spectrum disorder. And a more conservative estimate is [00:00:50] one in 300 people. But are we seeing [00:00:55] an epidemic or have we merely gained a clearer picture  of what [00:01:00] autism is about. This question has personal relevance [00:01:05] for me because in June 2007, I learned that I have asperger's syndrome, [00:01:10] which is on the autism spectrum. And if there is any one key [00:01:15] word that encapsulates what I believe we are seeing [00:01:20] happen, is autism spectrum. it reflects a [00:01:25] substantial, substantial change in the way that autism is diagnosed. [00:01:30] The CDC describes an autism spectrum disorder as [00:01:35]  impacting social interaction, communication, [00:01:40] unusual behaviors and interests. You generally detect [00:01:45] an ASD before the age of 3, and it pretty much lasts for a person’s [00:01:50] entire life. A really excellent history of  [00:01:55] the diagnosis can be found in a book by Roy Richard Grinker. [00:02:00] It’s called Unstrange Minds. He basically tells about how a doctor [00:02:05] named Leo Kanner here in the U.S. in about [00:02:10] 1943 did a study of about 11 children. These children [00:02:15] were in all other respects different,  but they all [00:02:20] shared linguistic and social impairments and he [00:02:25] came up with the adjective, autistic, to [00:02:30] describe what these children were experiencing. Now at nearly the same time [00:02:35] but on the other side of the Atlantic, a doctor named Hans Asperger [00:02:40] did a separate study of 450 children. And [00:02:45] his findings suggested that autism manifested a spectrum of [00:02:50] severities. But his findings just kind of stayed on the other side of the Atlantic [00:02:55] for many many years. Now another factor that was going on [00:03:00] was something called diagnostic substitution. And basically what that means [00:03:05] is that autism wasn’t being diagnosed, [00:03:10] it was paired as an adjective at first with schizophrenia. and so [00:03:15] other labels were being given to people. When I was a child growing up, [00:03:20] my stepmother told me I was retarded once. She actually came right out and [00:03:25] said “You’re retarded,” and you would see more [00:03:30] severely challenged individuals being labeled “mentally retarded,” 00:03:35] “schizophrenic.” So it wasn't until 1991, [00:03:40] a thing called the autism diagnostic interview was [00:03:45] published. And in 1992 the, let's see, the Diagnostic [00:03:50] and Statistical Manual, the fourth version actually had [00:03:55] autism. And the fourth edition actually [00:04:00] gave us a spectrum criteria. For the first time it enlarged the criteria. [00:04:05] There’s a whole bunch of them. PDD, which is Pervasive Developmental Disorder, [00:04:10] they can all be lumped under the term autism. But they reflect varying [00:04:15] degrees of severities. And so basically as [00:04:20] it was summed up by, “In essence it became possible [00:04:25] for someone to be very autistic or mildly autistic.” [00:04:30] Now another really important change that happened in 1990, [00:04:35] was that for the first time, autism became a category under [00:04:40] special education law, where if you had autism, you were guaranteed certain, [00:04:45] certain individually designed [00:04:50] instruction. So now you started ... This eliminated things [00:04:55] like diagnostic substitution instead of autism. [00:05:00] An interesting thing happened though was that a child who might have gotten [00:05:05] another diagnosis but whose traits could be described as autism, [00:05:10] they would apply the label because it got the services [00:05:15] this child needed. And Dr. Tony Attwood, one of the most [00:05:20] highly respected in the autism and Asperger’s field, [00:05:25] even brought up in one of his books, clinicians will give the diagnosis that [00:05:30] will get the treatment the child or adult needs. [00:05:35] Now with the addition of autism as a category under special [00:05:40] education law, schools began documenting autism for the first time [00:05:45] as an educational statistic. Now [00:05:50] up until this point there had really hadn’t been any [00:05:55] record keeping to the degree that it is now. So that when you throw out [00:06:00] a statistic like one in 150, there’s really [00:06:05] nothing to compare it to with under the same [00:06:10] exact set of circumstances. It sort of just has to stand by itself. [00:06:15] And so in conclusion autism has gone in my lifetime [00:06:20] from limited and specific criteria, that eliminated, disqualified [00:06:25] many people, to criteria that acknowledges varying degrees [00:06:30] of severity. We are seeing more cases of autism because we are learning [00:06:35] where and how to look and so the only “epidemic” is in the [00:06:40] sense maybe of critical mass. It’s gotten so much attention [00:06:45] that it’s in the public eye in a way that it has never been before. [00:06:50] But I don’t really see that as an issue for concern. Instead I [00:06:55] see it as a cause for celebration and rejoicing because it means [00:07:00]  more people who may need help may be getting that help, and even those of us who [00:07:05] we might not need help because we’ve learned to cope on our own, our [00:07:10] concerns about previous issues are being assuaged [00:07:15] because now we have an explanation for why we went through some of the things [00:07:20] we went through.

Transcript prepared in January 2015

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