I got my diagnosis of Asperger's 11 years ago this month. As my story goes,my doctor didn't really know what it was and he told me, "good luck" to which I was relegated to looking it up on the "all knowing" internet. The information I got back then was awful. The first site I read stated, "people with Asperger's will never have a job, will never have friends, and will never be happy." Obviously not a good introduction but I've been thinking about what would I feel if I got my diagnosis today? Have we advanced? Has information gotten better? After much thought I am fearful.
Via social media, stories of autism are quickly shared and an autism horror story of abuse, crime, or some other story, be it about bullies, is beyond prevalent. And the thing with these stories are that they don't go away. Should they be shared? I'm not going to say no as today on my Facebook newsfeed was a story about a person with severe autism who was restrained to a bed for 21 days in Australia. Should there be outrage? Absolutely, and yet at the same time these stories, one after another, come out and if someone isn't already affiliated with the autism spectrum the word autism is going to have a major stigma because, per social media, we've either committed a major crime, had a major crime committed against us, or we a target of severe abuse.
On the flip side there are many stories about the exceptional achievements by those on the autism spectrum. These stories, as well, can be helpful or harmful. Harmful? For those already affiliated with autism, our hearts soar when we see a person on the spectrum make a great play on a sports team he always wanted to be on, or being elected homecoming king or queen, or being light years ahead of their peers in school. Yes, this is good. But for those not yet introduced to autism, it's got to be oh so confusing because on one hand there are stories of abuse, neglect, and worse and on the other hand there are these stories of supreme compassion and stories showing the perseverance of the human spirit. Now, had I just seen the superlative stories when I got diagnosed I'd have felt somewhat, well, overshadowed, intimidated, and depressed because all of these stories have told me that I should have been this amazing person with all these amazing accomplishments.
Here's the thing; both of these types of stories, the horror and the great, are going to be shared and maybe societal change will come from seeing the neglect, but for those not yet diagnosed the autism spectrum has to be this puzzling enigma and making heads or tails of it is something that most people won't give five seconds for and what is lost in all of this is the middle ground; the everyday life of living life on the autism spectrum.
Sure, middle ground of anything has never been newsworthy. When was the last time you heard a news anchor say, "Our lead story today was that it was an average day in the city. We go live to our reporter who is in a park where not much has happened today on this average day. Steve, what are people saying in the park about the average day today?" Yeah, that isn't going to happen and that also is why I feel our struggle for not just autism awareness but rather understanding is becoming a much more difficult task. Talking about social anxiety in a crowd, or not understanding the timing of a conversation, or talking about sensory issues isn't going to have that shock value, or that heartwarming story that a person is going to remember throughout their day. However, living life on the autism spectrum is to live in that middle ground. If you are reading this then I'm going to assume that you are already aware of the autism spectrum and understand what I am saying. My concern is those outside this awareness. My concern is the images that those people receive because they are only going to see the extreme good or the extreme bad. The middle ground receives no attention which may make a person have no idea what autism is when they encounter it. Is it something to be deathly afraid of? Or is it something that, in the end, is going to have a heartwarming conclusion? Lost in it all of this is the "normal" person on the autism spectrum who is trying to make it in life and struggles with a simple task such as saying "hello" or a student in a classroom who just can't understand why no one in his class shares his love of cars from the late 1940's.
We must strive onward and yes, there will be more horror stories that will make the rounds, and there will be stories on the opposite end that will warm the heart, but it's in the everyday struggles that life occurs for most people and if the world just sees the extremes the world will forever remained as confused as ever on what, exactly, the autism spectrum is.