The Not-so Ominous Increase in Autism
An article in the October 29th Providence Journal entitled Ominous Increase in Autism suggests in rather alarmist language that
Like the canary in the coal mine, the increase in autism maybe [sic] a warning to the world of the potentially disastrous consequences of poisoning the environment in which life developed, and upon which life depends.
Ominous Increase in Autism is by Gerald Groden, who is the co-director of the Groden Center in Providence, RI, which is (according to its website), the largest provider of services of autistic persons in Rhode Island.
In the Providence Journal article, autism is referred to as a “frequently devastating disorder.” Groden refers to some of the autism research and treatment presented back in July at the 37th National Conference of the Autism Society of America (ASA) in Providence, such as the keynote address by Dr. Martha Herbert, a neurologist associated with Massachusetts General Hospital and Harvard University. Herbert suggested that autism is a “chronic disease” involving both the gastrointestinal and the allergy/immune systems:
…autism may not be the result of specific genes producing autistic symptoms. Rather, she believes that autism may result from a combination of certain genes that are particularly vulnerable to environmental insults, such as chemical toxins…….
……
If confirmed through further research, her findings could serve as a dire warning to humanity.
The research about the causes of autism cited by Herbert is not unfamiliar to the autism community; neither is the use of “devastating” to describe autism, or the suggestion that some environmental agent is lurking in our midst and potentially causing the “dramatic increase” in the numbers of persons diagnosed with autism. I much appreciate Groden’s description of the research from the ASA meeting and the longtime work of the Groden Center, but do not think it very positive only to refer autism in such terms.
Life with autism is often not easy. Hungry after being woken early to drive to Manhattan with us to pick up Kassiane, drive her to the airport, ask her for a lollipop, and wait most patiently this morning, our son Charlie screamed and back-arched long enough to turn a few heads and send us on a search for gluten-free items at 10am after we had said good-bye to her. But the presence, the fact of, more or simply many autistic persons ought not to be thought of as some “dire warning to humanity.”
Speaking about autism and autistic persons in such tragic terms and such a negative tone was precisely what was not the point of the October 27th Autism and Advocacy Conference. Indeed, “the causes of autism” and “treatments (biomedical, educational) for autism” were not the focus of the conference, as they are at most autism conferences.
The majority of the audience and the speakers at the conference were not autistic; the hope is that next time (whenever that might be) such an event occurs, more autistic persons will and can be present. The presence of those who are autistic at the conference (including those who spoke as official presenters and from the audience, and those who did not necessarily self-identify as autistic) made, not unsurprisingly, the greatest impact.
If there is an increase in autism, it need not simply be seen as “ominous,” but as the result of us understanding what autism is better; of us having more precise epidemiological instruments to count the number of autism diagnoses; of better services existing to teach autistic children, as Roy Richard Grinker argues in Unstrange Minds: Remapping the World of Autism (forthcoming February 2007):
I am not so sure why people are so resistant to the idea that true autism rates may have remained stable over the years, and that there is no real epidemic……If there is no real epidemic, we might just have to admit that no one is to blame. Their desire is understandable. But we cannot find real solutions if we’re basing our ideas on false premises and bad science. (p. 171)
As Grinker writes near the end of his chapter on “Autism by Numbers”:
The prevalence of autism today is a virtue, maybe even a prize. (p. 170)
Imagine that: An increase in the number of autism diagnoses as a sign of something potentially positive rather than as a negative, and not “ominous” at all, but a sign of a deeper acceptance of diversity and human difference, and of understanding.
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5 opinions for The Not-so Ominous Increase in Autism
Autism Vox » The Difference a Diagnosis Makes
Nov 11, 2006 at 1:59 pm
[…] Some may see the diagnostic confusion that led to an autism diagnosis for Evans’ son as the most appropriate explanation for his needs and, too, as the best way to provide him with the services he needs, as further evidence that autism has become a sort of “trendy diagnosis” to get one’s badly behaving child, as Katie Grant wrote in a much-commented-upon article on May 14th in Some ‘autistic’ children aren’t ill, they’re just badly behaved. Consider instead Grinker’s position on the autism epidemic: The prevalence of autism today is a virtue, maybe even a prize. (p. 170) […]
Cynthia Whitfield
Nov 12, 2006 at 5:33 pm
Well I certainly can’t speak for everyone, but for my family, autism has certainly been a “devastating disorder.” Maybe his diagnosis is wrong and he just has some autistic characteristics, because it sure as hell has caused extreme negative consequences for him and the family. See him struggling to talk, being upset at not being able to play video games like his brother, wanting to read something but not being able to make it out, etc. There were many times we couldn’t do things as a family because he’d run away, or destroy things, etc. He’s not so destructive anymore, and the tantrums have died down, but to say this experience was any less than devastating would be a lie.
If I were the type I guess I could retionalize it all and say it really wasn’t (isn’t) that bad, but I’d be lying to myself. But sometimes rationalizing helps people to go on, so I guess that’s fine for them. I tend to have a need to see things as they really are, even when it’s not so pleasant.
Cynthia
Kristina Chew, PhD
Nov 12, 2006 at 11:28 pm
Cynthia, honesty has proved the best and only policy for us….in being able to talk about what Charlie actually does and how life is indeed not easy. And how there is suffering and how one indeed can feel…..really awful…… for myself, it has been necessary to see that there is some good, or light, or whatever one might call it, whatever happens in a day. Time and again, it is only when we have been thoroughly honest about whee Charlie is at that we have been able to begin to help him.
Clay
May 7, 2007 at 10:41 am
Cynthia,
Not that you are ever going to see this, but, I’m glad to hear that your son’s tantrums eventually went away. I hope that the same happens for our Edith Rose.
However, having an autistic child, with all of the difficuties that come with raising him or her,
and I can definately relate to some of your experience, (Edith is too little to read, and doesn’t show much interest in video games, or toys for that matter), is not devastating. Having your child suffer and die of something like cancer would be devastating.
If, God forbid, one of Edith’s seizures was to kill her, then we would be devastated. I can live with her autism and all of its challenges. I can’t live without her.
Kristina Chew, PhD
May 7, 2007 at 11:24 pm
Clay, Your last two sentences say it all—-I had a hectic day but soon as I saw Charlie getting off the bus all was right.
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