Finding Answers in Disability Limbo

A few months ago, I wrote a post about my need to belong somewhere within the disability community and my possibly intruding upon communities I don’t belong to. One such community is that for brain injury patients. As far as I was concerned, “brain injury” was always followed by “sustained after birth” or preceded by “traumatic” or “acquired”. Yet brain injury can occur at birth too. Only then it’s not called brain injury, right?

Since my autism diagnosis is being questioned again, I’m feeling an increased need to figure out what exactly is wrong with me. In part, this entails putting a name to what I have. Are my motor deficits diagnosable as dyspraxia, mild cerebral palsy, or are they not diagnosable at all? Am I autistic or not? Then again, putting a name to my disabilities is but one of my quests. As I’ve experienced, most communities are open to those with an uncertain diagnosis, so it’s not that I need to have a diagnosis to fit in with a support group.

Back when I was diagnosed with autism, I didn’t want a specific ASD diagnosis. The psychologist, who ultimately gave me an Asperger’s diagnosis anyway, said he wanted to do an assessment of my strengths and weaknesses. I don’t know whether a quick DSM-IV interview amounts to that, but to me, a lot of questions remain unanswered.

It could be my slight neuropsychology obsession, but I want to know why I have issues I do have. I want to understand, in a way, why I can’t function at the level I’m supposed to given my intelligence and verbal abilities. Is it normal to be unable to load the dishwasher but able to write a lengthy blog post? I don’t think a diagnosis, whether it’s autism or brain injury, will answer this question per se, but what will? It is most likely that I have quite bad executive dysfunction, but can this at all be validated? Should it?

It isn’t purely that I’m overanalytical and want to understand my every bit of brain function. It’s more that I’m struggling terribly with being seen as more “high-functioning” than I am in daily life. Not that I want to reinforce the stereotypes surrounding the Asperger’s diagnosis, but my mere existence won’t defeat them either, and I’m sick and tired of having to prove myself.

7 thoughts on “Finding Answers in Disability Limbo

  1. I am sorry you’re struggling a little bit to see where you fit in, but that just means you’re unique 😉 In all honesty, I think eventually you’ll get the right diagnosis and will find exactly where you belong!

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  2. I don’t think there’s anything wrong with being driven to find out what caused your problem. Having a disability of any kind is so hard. I’m blind in my right eye – I was born that way – and it caused me various issues through out my life, but most people don’t believe me because I don’t have enough visible issues for them, I guess.

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