Autism, Children's Health, community, family, Parenting, The Invisible Moth

Mind the Gap

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Note: As usual with my more serious discussion posts, I have attempted to soften the blow with some very lovely pictures.

Do we all know what “mind the gap” means? When you step onto a train, and there’s a space between the edge of the platform and where the actual floor of the train car begins? And they have signs and warnings, “Mind the gap,” because they don’t want anyone to accidentally get hurt?

The reason I chose that title for this post came from thinking about things where there are major gaps between one issue and another, gaps that really need to be bridged if we’re going to get anywhere.

So, when I was a young mother, and had a primary-grades child diagnosed with autism, I heard a lot about how autism was “bad.” It would create major obstacles for him in school, in future life, in trying to get a job, get married, have a career, function on his own in society.

And, feeling an immense amount of society-induced guilt, I tried my hardest to get my child to change his natural behavior. Encouraged him not to stim (even though it cut back on anxiety), forced him to try to conform, insisted he not spend too much time alone.

After a couple of years, I saw that none of this was working. And more than that, it was beginning to dawn on me that I was reliving a dangerous pattern.

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When I was young, I behaved differently than my peers, and I was told not to. Teachers felt my desire to play alone, to engage in solitary pursuits, was harmful. I was instructed to read less and take up more interactive hobbies, try a sport, join a club.

So I tried. And I was miserable. I couldn’t understand some of the social cues, and that made me sad and mad, and that led to worse inner experiences, because I couldn’t understand or deal with all the emotions I felt.

So I gave up trying. By the time I was a young adult, I just wanted to be left alone to behave how I wanted to.

Then White Fang’s father — and a bunch of other stuff — happened. Not only did it change my life forever (because White Fang was born), but it also started me on a path of self-discovery.

Having a child that shares the same spectrum I inhabit, but doesn’t rest on the same space I do, and only occasionally visits, has made part of this path more complicated. One of my first questions was — if it was so easy to diagnose him, why not me? What’s the big difference?

It turns out there are many, many women who are now adults that either were suspected of being ASD as children and weren’t diagnosed, or were considered “in an introvert or geek phase,” and therefore passed over for diagnosis. 20 years ago, most psychologists in North America were looking for autism based only on a very specific set of criteria; so if a female child wasn’t showing significant language delays, or regularly made eye contact or was able to tolerate social interaction, they were deemed “probably not autistic.”

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This idea was totally wrong.

Mind the gap…

Though we’ve entered a new age of research regarding autism, I truly don’t think we’re yet at a new age of how we approach and understand ASD. Quite honestly, it concerns me. I want my kids to grow up in a world where differences from the norm are accepted, where ways they perceive and react to life is just viewed as part of the whole grand human experience.

I don’t want my son to be told he can’t go to this or that church because he’s an abomination that “needs to be cured”. I don’t want him and his future wife to be told that, since they “run the risk” of having a child on the spectrum, they should engage in pre-natal genetic testing that may “help” them decide whether or not to bring this life into the world.

Mind the gap…

I don’t want Muffin coming of age in a culture where he has to constantly shout into the void that his brother is not a freak. I don’t want to live out my remaining days surrounded by neighbors and acquaintances that keep giving me funny looks, or determine my value as a person by how many public events I attend. I want to know that the struggles and achievements of Temple Grandin, Cynthia Kim, myself, mean something good for the future.

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Most of all, I want to know that for whatever purpose God put me on this Earth, with autism, it has been served.

“Sometimes even shooting stars find wishes that missed their marks… But when the night gets too dark, and the road home seems too far… We’ll see the sun come up again… We will climb higher than we’ve been… We’ve got a fire that burns within” — Dragonhearted (by Try Hard Ninja and Captain Sparklez)

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4 thoughts on “Mind the Gap”

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