The strategy announced last week by The American Psychiatric Association to revise the definition of autism will effectively eliminate the autism “epidemic” simply by changing what we mean by the word autism itself. The APA’s strategy has two paradoxical outcomes. First, it neatly absolves society of the burden of supporting a significant population of people whose needs are not changed in the slightest by the clever redefinition of the label that describes them.
But at the same time, the APA’s strategy also acknowledges how universal this condition we call autism actually is. In a way, the autism spectrum has become so universal it can no longer be considered “special.” But the fact remains that all people have basic needs — for medical care, for education, for employment, for a home to live in, for dignity and respect — and that all people have something important to contribute to the common good. This is true of everyone, regardless of what their particular version of the human condition might be or where they fall on the universal spectrum of attributes of which we are all composed in infinite variety and combination — the human spectrum.
I recently ran across Temple Grandin’s remarkable account of her experience as a person with autism. In her fascinating book Emergence: Labeled Autistic, Dr. Grandin (she has a doctoral degree in animal science from the University of Illinois at Urbana-Champaign) describes her unique way of perceiving the world as an asset that gives her distinct advantages over “neurotypical” people. Dr. Grandin, as she has gradually come to realize, is a “visual thinker” which gives her tremendous advantages as a designer of complex industrial equipment. But at the same time the unique way in which her mind works makes it difficult to understand more abstract concepts like algebra or the complexities of human emotion and relationship.
As a child Dr. Grandin was blessed with a strong family and support system. Like many children with classic symptoms of autism, she “had a violent temper, and when thwarted,” she says, “I’d throw anything handy … [and] … screamed continually.” By the age of three her behaviors had reached such a desperate state that doctors were recommending she be placed in an institution. Yet her parents and teachers continually worked to develop her talents. “Too often,” she recalls, “teachers concentrate only on the deficits and may neglect strengthening the talent area.” Now by any standard Dr. Grandin is a highly successful professional as Professor of Animal Sciences at Colorado State University and designer of livestock handling equipment used worldwide.
The point is not to glorify disability or to understate the daunting challenges often posed by developmental conditions like autism, cerebral palsy, Down syndrome and so on. Rather, the point is to deal with the challenges while focusing on the possibilities — on the unique gift and contribution that every person brings, and on the qualities that are evoked in everyone when people of all abilities are engaged with one another. I have yet to meet a parent in my work who, despite a lifetime of dealing with sometimes overwhelming physical and behavioral challenges, did not in the end feel their child had unique gifts to offer.
I think, for example, of the mother I met recently whose adolescent daughter has profound developmental conditions that include being nonverbal, wheelchair-bound, tube-fed and a frequent long-term guest at Children’s Hospital. The biggest challenge, says her mom, is not the tubes and diapers and medical worries, but rather the lack of play dates. Because her daughter, whose radiant smile in the presence of friends could light a small city, loves other kids above all things. She is not a university professor or frequent talk show guest, but she has this in common with Temple Grandin — her differences, her very challenges, speak to her inherent worth as a human being and evoke wonderful qualities in everyone around her.
We are all on the spectrum, the human spectrum. And this is a good thing because the world needs people of all abilities and the unique gifts we bring to each other.
Tom Everill is President & CEO of Northwest Center. Contact him at inside@nwcenter.org.