Well Being

What Else Can We Talk About If There’s No Autism Epidemic?

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On reviewing the topics of my ten most recent posts, I have detected a common thread:

See it?

Even though whether autism is an epidemic appears to be the autism topic du jour, this post will not be on this subject.

This post is about the experience of parents of children with autism and, even more, about an experience common to more than a few of them:
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Some parents’ lives take such extraordinary turns that they cannot remember the kind of person they were before they had a child with autism.

Together, parents of children with autism are more responsible for the progress that has been made than any of them, individually, realizes…..There is Lidija Penko in Croatia, whose husband is a fisherman and away from home much of the time, who takes care of her daughter Nina by herself, yet manages to run a local autism center……….Monica Mburu, in Kenya, has single-handedly helped rescue autistic children from abusive treatment and started Kenya’s first autism society. ……..

Autism shatters many lives and it changes everyone. But many turn the hardship of raising a child with a disability into something positive, even if it means their futures are different from what they expected, or from what their families and culture wanted. (p. 199)

This description of how the experience of raising a child with autism changes parents and (in the cases of Penko and Mburu, and indeed of many more), transforms parents “possibly for the better, and certainly for good” (p. 227) opens “Igloos in India,” the ninth chapter of Unstrange Minds: Remapping the World of Autism by anthropologist Roy Richard Grinker. “Igloos in India” is the second chapter in the second half of Unstrange Minds; in the previous chapter, “Isabel in Monet’s Garden,” Grinker narrates the story of how he and his wife, Joyce, were able to turn his daughter’s fascination with a book, Linnea in Monet’s Garden, and its main character, a dark-haired girl named Linnea, into an opportunity for her to grow and cultivate long-lasting interests, rather than an obsession with one single text or topic. The Grinkers travel “to Paris and Giverny to help Isabel make the leap from the restricted world of a book’s finite words into a world of other subjects, like Monet’s life and work, impressionism, and French language and culture” (p. 194). On their return to the US, Isabel becomes interested in art, attends French class (with her father at her side), and is no longer afraid of dogs.
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“Call the trip extravagant and indulgent, but it made a difference,” Grinker writes (p. 195): Which of us parents of autistic children have not made gestures, if not purchases, “extravagant and indulgent,” in the deep hope of stoking some interest in the world, some change even, in our children? For several summers, Jim and I have rented a beach house on the Jersey shore for two weeks, to indulge Charlie in the extravagance of life a block from the ocean, the sand he sifts his long fingers through, the powerful waves he walks straight into or ducks under as he swims his way out into the deeps, not to mention regular take-out meals of shrimp and French fries—Charlie always seems to come into his own when we are at the ocean.

There has been more than a little media coverage about Grinker’s argument for why there is no autism epidemic. As a review in the January 15th Library Journal indicates, Unstrange Minds is about much more:

Grinker examines the broader historical context of autism through the work and lives of key figures Leo Kanner (who first identified autistic children) and Bruno Bettelheim (who worked extensively with them). He also addresses the autism epidemic by pointing out that many people with autism were not seen as autistic before. Third, the text addresses autism in a larger global context, explaining how cultures in Africa, India, and South Korea cope with the condition. These three elements combine to create a book that ranks with Uta Frith’s Autism: Explaining the Enigma as one of the great general books on autism.

Grinker’s argument about why there is no epidemic of autism needs to be seen within the context of Unstrange Minds as a whole. Unstrange Minds is about how a complicated interplay of “key players….. raised the visibility of autism and made it a cause worth fighting for” (p. 171). “[S]cientists, clinicians, parent advocates, philanthropists, educators, speech therapists, psychologists, and behavioral intervention specialists, among others” (p. 171) are listed. I would also include autistic persons and self-advocates and parents, both here in the US like Maureen Fanning of New York, mother of two autistic sons, and Merry Barua of the National Center for Autism in New Delhi, whose stories and struggles for their own autistic children and to make a difference for all children with autism are chronicled in Unstrange Minds.

“Sometimes in the panic of the ‘epidemic,’ however, we forget how lucky we are in North America—lucky to have a label that doesn’t stigmatize the way it used to,” writes Grinker in his book’s last chapter, “Beyond the Curve.” He mentions Jason McElwain, the autistic teenager who scored seven baskets in the closing four minutes of his high school team’s basketball game in February 2006, and who has been the reason for both celebration among the autism community and also the source of critique, as some have noted that the media coverage is great, but there are still those children with “severe autism” who are “low-functioning” and who point to why a cure for autism ought to be found.

We’re lucky that we are finally getting more accurate prevalence rates, that we have medication and treatments that help people with autism, and that we can now imagine positive and productive futures for them. The children diagnosed with autism throughout the 1980s and 1990s have already grown up and are being treated more humanely than autistic adults were in the past. (p. 290)

Just as Simon Baron-Cohen noted earlier this year that “it has never been a better time to have autism,” Grinker in Unstrange Minds offers a message of optimism about how the world (whether we know it or not) is changing to be a place for autistic persons. Grinker offers a message of hope that is rooted in the efforts of parents of autistic children and of autistic persons themselves to change, grow, and learn from their experiences.

In other words, there is a lot more that Unstrange Minds: Remapping the World of Autism has to teach us than that there is no autism epidemic. Seeing how Grinker presents his argument about how our expanded understanding of autism has resulted in the highest prevalance rates ever for autism is certainly a good reason to read Unstrange Minds, but his portrait of the bigger picture of autism around the world and of how parents everywhere have found ways to help their autistic children is why his book is compelling reading. Grinker’s argument for why there is no autism epidemic is just one facet of a book that quite literally moves discussions about autism into new territories, and towards new answers.