My own intense world
Why I wish I had been diagnosed with Asperger’s as a child
If the Asperger Syndrome diagnosis had existed when I was a toddler, I probably would have qualified. I began reading at 3 years old; had intense intellectual obsessions and obsessive compulsive behavior; preferred thinking about ideas to socializing; and was overwhelmed by emotion, sensation, and experience.
I banned my mother from singing songs in a minor key because they made me cry. I had a photographic memory and memorized much of the periodic table. I hated being touched—unless I was in control—and I refused to wear itchy fabrics or try new foods. I was diagnosed by a child psychiatrist when I was in preschool as “emotionally labile” and “hyperesthetic”—A.K.A oversensitive, as well as gifted. My parents and teachers saw me as brilliant—but I was also called “selfish,” “bossy,” and “not a people person.”
When I was writing about the Markrams and their Intense World theory for MATTER, I considered including my personal investment in the story, but the editors ultimately decided against it since the story was already so complex and multi-faceted—not to mention long.
Now that I have an opportunity to write about the “story behind the story”, I thought I’d discuss my own “intense world.” I lived the paradox that many autistic people face: we’re considered selfish and distant but are actually primarily just oversensitive. As a kid, this plunged me into self-hatred and, later on, depression and addiction. I thought I was incapable of relationships and irreparably damaged. If I had received the diagnosis, I might have at least understood that there were other people like me, that it wasn’t my fault.
I may have decided that the diagnosis meant that I was even more broken—but I suspect not. I experienced my later addiction and depression diagnoses as a relief because they offered a way out that didn’t involve torturing myself for causing the problem.
My personal struggles with the intense world made it even more fascinating for me to visit the Markrams’ labs in Lausanne, Switzerland and learn how they developed their theory that autism is not primarily a defect of empathy, but a condition associated with abilities as well as problems that result from being overwhelmed by incoming sensory and emotional information. Their warm family interactions and easy inclusion of their autistic son, Kai, were plain to see: they didn’t distance themselves from his difference, or see it as something alien. This was probably easier now that he no longer has many meltdowns, but I suspect that part of the reason he has been able to improve so much is the strong social support that the intense world idea has reinforced.
When you see your child as overwhelmed, rather than self-involved or lacking the ability to recognize you as a separate being, it’s much easier to empathize with him or her. And that can strengthen connections on both sides. For me, this is part of the beauty of the theory.
Because autism (and every other DSM diagnosis) is basically a catch-all based on symptoms rather than a particular and measurable pathology, I suspect that the Intense World theory may account for some—but not all—cases of autism. But I hope the Markrams won’t give up on the idea as they have said they would if it doesn’t hold true in all cases. Given our diagnostic limits, I don’t think any theory of autism can hold up to that standard.
Although autism and addiction seem to have little in common, they share at least one dangerous feature: the abnormal behavior seems like a problem to other people, and a solution to us. Understanding this involves realizing that eliminating the objectionable behavior doesn’t “cure” the issue that is driving it. Recognizing that autistic people and those with addictions are utilizing the best approach they know, again, can increase compassion and improve treatment.
To find out more about the Markram’s Intense World theory of autism, read Maia Szalavitz’s The Boy Whose Brain Could Unlock Autism.
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