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How out to be

This is something that I have been idly thinking about since my diagnosis (which, granted, was not even a year ago).  At first I was so excited that I had an explanation for my weirdness that I was telling lots of people.  Then I thought that maybe I shouldn’t be so loud about it and stopped telling people.  Now I’m wondering, in a more serious way, just how out I should be.

I have been told that I pass for normal some 90% of the time.  Then again, I have also been told that it is screamingly obvious that I’m a little odd, though it’s not obvious why exactly I am odd.  In any case, the question is regarding that last 10% of the time.  Usually involving something going wrong, a trigger being tripped or my simply being overloaded, and a meltdown or shutdown happening.  That’s bad.  Plus, people don’t always know what they are looking at.  My going elsewhere because I have a dire need to get away from whatever is causing the problem can look to others like storming off in a huff.  Plus, sometimes I need odd things, like how I can’t stand to be lightly touched, or I prefer to not touch people unless I am fairly close to them, and I need to watch my environment to make sure I don’t get overloaded.  I have learned the hard way that people can be somehow personally offended by my needs or think that they are pointless and silly.  Putting them in a context of an autism spectrum disorder could, potentially, really help.

On the other hand, people tend to have ideas of what ASDs are, and what they mean, and what a person on the spectrum looks like.  Those ideas are frequently erroneous.  Putting myself out there means that I will be subject to people’s biases and prejudices, both in my personal life (such as it is) and any potential professional life.  There is some minor possibility that I could educate a few misguided people, but it’s certainly not something I’d count on.  So being out is definitely a risk.

I don’t have an answer, but right now I am learning more towards being open about the fact that I have neurological differences.  Maybe not announce it all the time, but not treat it like a secret either.  Yes, I am on the autism spectrum.  Yes, it has a huge impact on my personality and identity.  No, I am not rain man.

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Just an article I want to share: Changing perceptions: The power of autism.  In a way, it’s personally inspiring.  I will probably never be a scientist, but I don’t have to think that I can never be anything.

A few excerpts:

Since joining the lab, Dawson has helped the research team question many of our assumptions about and approaches to autism — including the perception that it is always a problem to be solved. Autism is defined by a suite of negative characteristics, such as language impairment, reduced interpersonal relationships, repetitive behaviours and restricted interests. Autism’s many advantages are not part of the diagnostic criteria. Most educational programmes for autistic toddlers aim to suppress autistic behaviours, and to make children follow a typical developmental trajectory. None is grounded in the unique ways autistics learn.

Even researchers who study autism can display a negative bias against people with the condition. For instance, researchers performing functional magnetic resonance imaging (fMRI) scans systematically report changes in the activation of some brain regions as deficits in the autistic group — rather than evidence simply of their alternative, yet sometimes successful, brain organization.

I no longer believe that intellectual disability is intrinsic to autism. To estimate the true rate, scientists should use only those tests that require no verbal explanation. In measuring the intelligence of a person with a hearing impairment, we wouldn’t hesitate to eliminate components of the test that can’t be explained using sign language; why shouldn’t we do the same for autistics?

Dawson and other autistic individuals have convinced me that, in many instances, people with autism need opportunities and support more than they need treatment. As a result, my research group and others believe that autism should be described and investigated as a variant within the human species. These variations in gene sequence or expression may have adaptive or maladaptive consequences, but they cannot be reduced to an error of nature that should be corrected.

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