• Sun, Jul 15 2007

You Don’t Need an Epidemic to Do the Right Thing

When I started blogging over two years ago—in June 2005—I stuck to recounting our daily life in “Autismland” with our son Charlie. This gave me plenty to write about: Like many families with an autistic child, getting through a day of happy times, of wild times, of worrisome tough moments, was enough. It was good to focus on the present—on what Charlie needed right now and on what we might do; if I did think to the future, it was often with stress and anxiety about what would happen to Charlie in his adulthood—although, as I realized today when my dad noted of Charlie “he’s almost as tall as you!”, the future is here.

Worrying about the future is something that parents of autistic kids do a lot, I have to say. Christine Collinson, who has two autistic teenagers, worries about it, as noted in a July 15th Independent article on Dr. Andrew Wakefield’s disciplinary hearing before the General Medical Council this upcoming Monday. Worrying is also something that grandparents of autistic children do a lot. As Charlie, iPod in hand (he has been walking around with his earbuds firmly in place and an easy swagger in his step of late), ran ahead at the mall with my dad following, my mom noted that she thinks a lot—worries a lot—about “what will happen” for Charlie when he is older. We talked about all of my California cousins, many of whom have children who are of Charlie’s generation; they do not see Charlie much, but they would like to and, while there is some understandable hesitancy, they seek out ways to get to know him: I was especially glad when one of my aunts took all of us to a Buddhist temple in San Francisco back in December and Charlie, holding fragrant sticks of heng, bowed to Yeh Yeh, my dad’s dad—-a big-hearted man who passed on 32 years ago, and who Charlie is named for.

Seeing family make such efforts to truly include Charlie makes me very hopeful for the future. I don’t know if Charlie will be able to have a job, or where he will live, or if he might start to have seizures, or if he will keep on liking school. I do hope that he can find his place in the world, and that the world can open itself up for a boy like him.

Worrying about the future sometimes fuels alarmist pronouncements about an impending “health care crisis” due to the rising numbers of children identified as on the autism spectrum; about an autism “epidemic,” the autism “tsunami,” the autism [insert natural disaster of your choosing]. It can spur parents to seek a cause for autism and then to attempt various treatments to “remediate” it. I understand why some might want to proclaim that there is an “autism epidemic“: Saying that there are rapidly rising numbers of autistic children can and has been used to get school services funded and dollars raised for autism organizations. I do think that the school services are necessary (and then some!) and research needs funding and awareness to be spread. But not because there is an “epidemic of autism,” but because autistic children need the services and programs—need to be educated.

So reports of autism rates going up or going down need to be presented with care and honesty, but recent media coverage has played into fears of autism “spreading.” It was all right for The Observer to report last week on a “big surge“—a prevalence rate of 1 in 58—that was leaked to the paper, as Stephen Pritchard writes in a July 15th article that is a sort of apologia pro sua ephemeris. He notes that “considerable controversy” was caused by the story:

Some said it would stir up alarm on the eve of the General Medical Council’s disciplinary hearing into the case of Dr Andrew Wakefield, who faces charges relating to his conduct during an MMR research project in the 1990s, and, it was suggested, the two ‘dissenters’ quoted in the piece were not ‘leaders in their field’ as claimed by the paper.

Furthermore, both had received payments for expert evidence offered at a now-abandoned court case against MMR manufacturers and one was currently working for a US clinic associated with Dr Wakefield, who had given an exclusive interview in the same issue of the paper to the same reporter.

Indeed: Reports on the rise or fall of the prevalence rate of autism are near-guaranteed to be noted and debated and worried over, not to mention quickly promulgated via the internet. The study cited by The Observer was unpublished, and the diagnostic tool used to identify autism in the children in Cambridgeshire was not originally referred to; readers were thus confronted with a puzzling statistic without sufficient explanation. Pritchard notes that the reporter

……agreed that lower, less alarming figures of one in 74 and one in 94 found in the report should also have been in the text.

Also noted was a charge that The Observer had “conflated” two issues, a very high prevalence rate for autism and the MMR debate: “The leaked document dealt in statistics, but not causes, as the story made clear, and yet the paper had reported the private views of two of its authors, both of whom were experts in autism, but were not vaccinologists.” Pritchard defends the reporting on the “1 in 58″ rate while noting the mention of the MMR issue was not necessary (and was referred to rather abruptly, as I posted). This is Pritchard’s final statement:

the leaked story of the apparent rise in the prevalence of autism was a perfectly legitimate and accurate story in its own right, which did not need the introduction of the MMR theory.

The “1 in 58″ figure and the unpublished study cited in The Observer are referred to in the July 15th Independent in the aforementioned article about Dr. Andrew Wakefield facing the General Medical Council; the “1 in 58″ figures is referred to along with the theory that the MMR vaccine may be a cause in autism. Wakefield was quoted as saying last week that “‘”My motivation is the suffering of children I’ve seen and the determination of devoted, articulate, rational parents to find out why part of them has been destroyed, why their child has been ruined.’” I note his concern for “the suffering of children” and his kind words towards parents; I find his references to children “destroyed” and “ruined” quite absolutist and not displaying a very extensive understanding of how autistic children can change and do grow up and can learn. I am frankly puzzled to see an autistic child equated with being “ruined”: My son has many challenges (he has what, in some circles, goes by the name of “full syndrome autism“) and (as I noted above), worrying about him is something much of my family engages in.

But when the going gets rough, if I stay focused on Charlie and his needs—a house he likes, that yellow schoolbus showing up every weekday morning, teachers and therapist who like him, people around him, people who understand him—-it is my worries that are destroyed. I am telling you: This boy can not always talk the talk, but he can walk the walk (as I said, he has gotten a swagger in his step as he tunes into his iPod), he keeps trying and learning and, yes, growing up. And I think I can best provide for his future by not getting stuck on what might have happened to him in the past or by stoking panic and alarm, and by focusing on the boy before me.

The future is now.

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  • http://maternal-instincts.blogspot.com Niksmom

    I agree with you, Kristina. WHile you may not know the specific things Charlie’s future holds for him (and for you and Jim), I am highly confident that it will be sweet and bright. Not that he might not have some rough spots but that he has such a loving, accepting community which you and your family have built/are building for him. How could it be anything other than good?

  • http://www.vickiforman.com Vicki Forman

    Hi Kristina,

    I recently added you to my bloglines, after intending to do so for so very long. This post reminds me of what the executive director of my son’s regional center once said, to wit, “you parents of children with special needs have to realize these kids are going to become adults with disabilities.” That prompted me to seek out regional center board membership so that I can educate myself on my son’s future, as well as advocate for the things he will need long past the time I am gone. Thanks for posting this and all the great work you do.

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  • Lolasmom

    Since Lola’s diagnosis, I have forced myself to live in the moment. For me, thinking too much about the future and all the potentially difficulties that might lie ahead paralyzes me and prevents me from taking any action that might help Lola, both now and in the future. Dwelling on negative thoughts, even if some might call them the reality of autism, is not helpful to me. For me (and I wonder how many others) it leads to too much hand-wringing and not enough pulling-up-my-sleeves to work on the real challenges.

    I’d like to hear more about organizations that are making the difference in the lives of autistic adults, like the Easter Seals Work Resource Center in Cincinnati. Its whole purpose is to create work opportunities for the disabled and/or disenfranchised – those with physical disabilities, developmental disabilities, at-risk youth, and welfare transitioners. I used to volunteer there years ago, back when I lived in Cinci. They do it all, from job training, placement, and follow-up. The facility runs an in-house “packing and fulfillment center” which bids on and completes jobs for local companies. There’s also a computer and technology facility (that may be only for educational purposes, though) and a construction company branch. Its like everyone that the WRC serves has their own employment IEP – they evaluate your needs, work on goals with you, and try to find your best employment match. Some served by the WRC never leave and work solely within the facility, many others find outside employment. They are really a great group – I only wish there were more non-profits like them.

    (www.swohio.easterseals.com/site/PageServer?pagename=OHIN_whoweare)

  • http://www.autismvox.com Kristina Chew, PhD

    It was a big thing for me to start thinking—as we did on Charlie’s most recent IEP—about vocational training. We added folding laundry and before I knew it, mention was made of jobs in hospitals…….We also added teaching to wash the table and vacuum etc.. I never want to stop teaching Charlie academics—-”reading” for Charlie still means flash cards on a board, but we keep at it. But it has become time to teach him other things; to teach him a broad spectrum of skills, and I’m glad I have started to think about this, but once the thought of vocational training was something I just could not think about.

    Great to hear from you, Vicki! Lolasmom, thanks for the mention of Easter Seals—-thanks always Niksmom!

  • Christina

    I provide psychotherapy and run social skills groups for young adults with autism spectrum disorders. I started working with this age group because nobody else was doing so. I did it not entirely sure how it would go. At least in my little corner of the world (Pasadena, CA) I am very encouraged by the emerging independence of “my’ young adults. They are–with accommodations and support–going to college, working, and living more or less independently. There is a developmental leap that does seem to occur between adolescence and young adulthood. Many develop insight into their brain functioning, which allows change and enhanced development. A number of my autistic young adults present with mood and anxiety disorders as their primary diagnosis, as the autism sort of fades into the background. As one 24 year old man told me, “you sort of move on from the autism.” While my clients are a tiny sliver of the population, I am very encouraged and hopeful for their future.

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