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Not disability, just different

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By Glen Jennings

 When I was young – too young to remember how old I was – I was diagnosed with Asperger’s Syndrome.  At the time, it was such a little-known condition that the psychologists I worked with couldn’t recognize it and initially said I had ADHD.  

Now, people know a bit more.  

We’re about halfway through the month of April, which has been designated as Autism Awareness Month.  Autism Speaks, the most well-known autism advocacy organization, usually puts on quite a show for the month, kicking it off with a campaign they call “Light It Up Blue.” On April 2, they encouraged people to light their homes and places of business with blue bulbs, reflecting their official color.  The campaign reaches far.  This year, even the Empire State Building shined blue lights into the sky.  

However, even with the rising number of diagnosed cases, there are still a lot of misunderstandings about the condition as well as a lot of ill-advised commentary about it. Comedian Jerry Seinfeld declared that he was on the autism spectrum in November of 2014, then backpedaled almost two weeks later. A White House internal communication mockingly referred to a socially awkward prime minister as “Aspergery” a little more than a week before.  

Sometimes the commentary takes a more malicious turn.  I remember shortly after Sandy Hook in 2012, some news outlets picked up on the fact that shooter Adam Lanza had been diagnosed with Asperger’s.  When those headlines started showing up on my screen, I was genuinely afraid of what it would do to public perception of me and others like me.  

Would people start walking on eggshells around me?  Would people genuinely be afraid of me?  

That wasn’t something I wanted, and yet the mere fact that news outlets reported Lanza’s diagnosis implied a connection between Asperger’s and the tragedy that unfolded. To be fair, many later dismissed the connection after talking to Lanza’s father, and CNN published a story about the responses from schools, parents and experts to combat harmful misconceptions Lanza’s diagnosis may have fueled.

Autism, which is primarily characterized by difficulty with social interactions, has now been reported in 1 in 68 kids, according to the Centers for Disease Control and Prevention.  Autism is what is known as a spectrum disorder.  It is not just one condition, but rather an array of different ones that all share similar characteristics.  Asperger’s in particular has a few specific quirks including narrow areas of interest, repetitive actions and a diagnosis that sounds like it got its name from a particularly unkind restaurant critic at a dive bar.  

Growing up with Asperger’s, I could tell that something was different about me.  It was blatantly obvious in that I just couldn’t interact easily with other kids my age.  I knew it.  I didn’t understand why, but I could see the disconnect clearly.  

There were a few other oddities.  I used to have trouble with recognizing people.  Faces are easier for me now, but back when I was a kid, I’d have to try and recognize characters in movies by hair and clothing.  A noisy cafeteria would feel louder to me.  More than a few lunches ended with me sneaking away to read a book in a library, where it was quieter.  

Most of what people think about autism comes from stories like that – kids who have trouble connecting with the world around them and who just can’t interact with people, but there’s another side to the story that is often overlooked.  

I’ve always had a strong memory and an ability to recognize patterns quickly.  I latched onto language early and it’s come naturally to me since.  I naturally look at things differently from other people, sometimes catching things they miss.  I learn skills fairly easily.  I feel like I can credit all of these attributes to Asperger’s in some way.  

So like many things, the truth about autism is not so easily separated into black and white.  In fact, due to autism’s status as a spectrum disorder, it may be even more complicated than most things.  

For example, there are people with nonverbal autism who are unable to speak.  There are those who have it in conjunction with other conditions, including intellectual disabilities.  

As for me, I don’t feel disabled.  I feel that the worst thing about having Asperger’s is dealing with people who don’t understand it.  The condition itself presents challenges, but I’d face challenges if I didn’t have it, too.  Social interaction is a skill just like math, music or writing.  It comes easily to some, but others need to work harder to build it. I just needed to work to develop the skill.  It did take work and I still have a few quirks that others consider unusual – for example, eye contact still does not come naturally to me – but for the most part, I’ve learned to communicate much more effectively with a lot of help and practice.  

In fact, astute readers may have noticed that I didn’t once refer to autism as a disability and mostly avoided the term disorder in the more than 800 words preceding.  That’s because in many cases, including mine, I don’t think it is.  Some people with autism do have a genuine disability, but since autism is such a wildly varied umbrella term, many don’t.  

After a long time, I became content with that part of who I am.  It’s not that it doesn’t define me, because it does, but so do many other things.  I have Asperger’s Syndrome, yes, but I also am a musician, a journalist, a writer, a movie buff, a Christian and so many other things.  To disown my Asperger’s would be to disown a part of who I am, and I don’t want to do that.  

Within the autism community, there’s a lot of debate about how to handle certain issues.  Do we want a cure?  Does Autism Speaks best represent our interests? Are we really disabled?  What causes our condition?  

Autism in its many colors is a relatively new condition. News-Medical explains that the term autism was first used in 1908 to describe schizophrenic patients and first used to describe what we now know as autism in 1943. The first big leaps to our current understanding came in the 1980s, but there are still a lot of unknowns. However, people with autism are starting to advocate for ourselves and understand ourselves and each other better.  

So how can a person without autism observe Autism Awareness Month?  I suggest taking the time to learn and listen to people with autism.  We have a wealth of stories to share and there’s still so much that other people have to learn.  There are also a number of authors and bloggers who write about their experiences with autism.  In particular, I got a lot out of reading John Elder Robison’s memoir, “Look Me in the Eye.”  

It would also be smart to do some research from multiple sources to see what different ideas people have.  And most of all, treat us with respect and dignity.  

Sometimes we don’t come off like we intend to, but from my experience, we truly do want to connect.  All we need is a little bit of practice and some people who are willing to understand.