The Perils of Un-diagnosing and "Curing" Autism

May 24, 2019

I'm fairly certain that if I was a child today, someone trained would have diagnosed me early on. I did not acknowledge my mother when she called my name and cried every time she combed my hair and attempted to put my socks on because both morning rituals caused excruciating pain. I spent hours sifting water and sand through my hands or obsessively painting black spots. I would have been seen standing next to Harrison Elementary School waiting desperately for recess to be over so we could get back to class while the other kids played chase or house together. I could correctly identify doric columns and flying buttresses as well as ethnic clothing from any known part of the world. I could also tell the difference between Crow, Blackfoot and Arapaho beadwork at an age when other kids were identifying Wile E Coyote or Fred Flintstone from Saturday morning cartoons.


And spinning. I loved to spin. Even at thirteen I spent a significant amount of time spinning. I got on well with adults and younger children but was terrified by my peers when I wasn't completely annoyed at them for breaking the rules or testing the limits. I was quick to correct them and spoiled more than one childhood reverie for my classmates including Santa Clause. I did not make eye contact, did not know how to ask questions or request help and the other girls referred to the language I did have as "stuck up". Experts would call it formal, idiosyncratic, pedantic.


I could go on but you get the point. As a child- I stood out.  As an adult, I've been called intense and slightly eccentric by some, but most people don't really notice anything too unusual about me and no one would look at me and say "that lady is autistic."


Is it because I've been "cured" or somehow grew out of my autistic tendencies? The answer to that is a loud and unequivocal "NO". I have learned from my experiences, people's responses and through sheer hard work how to "fit in and fake it" when the occasion calls.   It helps too that one of my special interests (autism) is also my career. I can obsess about my favorite subject in a way that society finds acceptable.


While I've learned neurotypical customs and language so that I can "pass" pretty darn well this does not mean my mind is wired to function like a neurotypical and that really is the problem when people talk about autism "cures" or undiagnosing someone. It assumes that the person suddenly can function in a neurotypical environment with the same ease as a neurotypical person when the truth is that fitting in can ta