Tag Archives: benefit

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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benefit or disability?

On an Asperger’s mailing list I’m on, there was recently a small amount of talk about whether AS is a benefit or disability.  One person complained that it seemed the same people who averred that AS is a benefit also wanted to have access to AS disability services, and claimed that it couldn’t go both ways.  That AS is either a benefit or a disability, but it can’t be both.  That is actually a beautiful example of the kind of black and white thinking that aspies are known to have, but that is not the point of this post.

I pondered that a little bit, and I decided that insisting on believing one or the other was too limiting for what AS really is, or what it can be.  Ultimately, I think it is both.

It would be difficult to deny the difficulties that AS causes people.  Autism spectrum disorders tend to be defined by deficiencies – by focusing on what aspies or auties lack.  It’s true, I do lack things.  I have intense difficulties with socialization, and have had those difficulties my whole life.  I faced social ostracizing as early as elementary school, simply because of how different I was, and how difficult I found people to be.  I get overwhelmed not only by people, but by bright lights and noises and smells and the constant barrage of sensory stimuli that happens when I am out in public or in a group of people.  That’s just life for me, and I’ve learned to avoid my triggers.

On the other hand, I think AS is a benefit in some ways as well.  When I say that it is not that I want to claim that AS does not involve difficulties, because clearly it does.  Instead, I want there to be more focus on the good things that AS can involve, on not defining it purely by deficiencies.  While it’s true that my tendency to obsess can cause me problems, overall I rather like my obsessiveness.  It means I can learn things quickly when I want to, and overall it can just be fun to randomly obsess about one thing or another for periods of time.  Lately I have been learning how to spin yarn.  I only actually practice for small amounts of time every day, but I think about it a lot.  A whole lot.  I watch videos, and then I replay those videos in my head over and over and over again.  I ponder how my previous practice spinning went, and play with ideas of how to do it better next time.  I mentally play with how to position and angle my hands to think of new things to try.  And most importantly, I really enjoy all this.  Eventually it will probably taper off and my brain will find something else to work over, but if all goes well I’ll end up with a new hobby to work on, enjoy, and improve.

Much the same thing happened when I first started horseback riding.  For probably around a year, horseback riding dominated my thoughts.  It has tapered off at this point, but it is still something I do every week and enjoy with great intensity.  In fact, now that I think about it, I think ‘intense/intensity’ might be a better word than ‘obsess.’  In general when I do things, I do them really hard, and I like that about myself.  My ability to focus and learn and do the things that fascinate me are all benefits that I hope to learn to better capitalize on.

So ultimately, if a person were to ask me if AS is good or bad, I would have to answer ‘both.’

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Sharing

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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