Category Archives: asperger’s

Spectrum or Different?

Autism Spectrum Disorder is pretty broad. I met a young woman today who has been diagnosed with Autism Spectrum Disorder. She seemed totally like every other neurologically normal person I’ve met in terms of motor, speech and social skills. Maybe I’m missing something she suffers from, but why on earth do we have the same diagnosis?

If I get a paper cut and you amputate your leg, people don’t say we have a Laceration Spectrum issue. But it’s worse with autism because autism is so many different issues lumped under a huge umbrella.

I have written my opinion previously that I believe that my autism and Asperger’s Syndrome are different neurological conditions with the same name. This confuses people. Temple Grandin is unable to read people, thinks visually, speaks, and needs no 1:1 support to get on with her life. I am her opposite. I have great insight into people, think in words, can’t speak to save my life, and need 1:1 help.

Somehow the brilliant minds looking into autism haven’t noticed that the opposite symptoms might be different conditions, not a spectrum. Her condition may primarily be a neurological difficulty reading people while mine is primarily a mind/motor disconnect, though both of us may have problems of self-regulation and sensory challenges.

Would it make sense to call a heart problem and asthma a spectrum disorder because they both lead to shortness of breath? Not possible because doctors identify heart issues and lung issues medically. Brain issues are the most unknown, so doctors look only to the external behavior. That’s observational, not medical.

Temple Grandin has poor eye contact. Me too. She talked late. Me too—to the point of still not talking. She has some things similar to me, but they are superficial similarities, in my opinion. So, I have decided to help out the professionals. I am happy to abandon the diagnosis of autism and give it to Temple Grandin and those with similar symptoms since it really isn’t the most helpful term to give people an insight into my medical problem. In fact, maybe we can have a contest to come up with a new name for my kind of autism. I have a few ideas:

Severe Motor Dyspraxia

Mind/Motor Communication Linkage Disorder

 Self-Regulatory Motor Control Disorder

You get the idea, no? Maybe a new name would lead to a better understanding and treatment of this neurological condition.

 

Understanding Autism

I correspond with a neuroscientist about autism. He asks me questions about things regarding autistic behavior to help explain what we think on the inside. I find many interpretations are incorrect but few experts ask me or people like me to explain. I guess it is hard because we often can’t communicate so they have to get information from doing trial and error or interviewing Asperger’s people. I feel both have led researchers astray.

Observations may show the result but miss the cause. Asperger’s is also a trial. It isn’t my trial, however. Recently I was interviewed by a filmmaker with Asperger’s. He was surprised at every answer I gave. This tells me that autism like mine and Asperger’s like his are fundamentally different in so many ways, and if researchers turn to people like him to explain the way people like me act they may interpret my behavior for his condition.

I am so grateful to be part of the solution now and to help researchers think differently about why we autistic non-verbal people act as we do. The worst frustration is to be misunderstood and I hope my book will shed light on what autism is for many of us.