Monday, 23 March 2015

6 Things People With Autism Want You To Know

I found this article on one of my regular comedy haunts but it was surprisingly well done.  They interviewed high functioning people with autism to compile the list of 6 Strange Truths About Life With Autism.

6. Pop culture always gets autism wrong.

This is pretty much a given for any complex and nuanced issue.  I will admit that I stopped watching Glee because of the character they introduced with Aspergers, who basically used it as an excuse to be a jerk.  She didn't show any of the signs of having difficulty understanding social interactions or repetitive calming rituals.  Instead she would just be insulting and cap it off with "Aspergers". 

The best portrayal of autism was actually on a House episode "Lines in the Sand" when the team treats an autistic boy.  Granted, the child was fairly low functioning, but it was still much more accurate for what families go through than say, Big Bang.

5. Our largest charity wants to "cure" us.

Again, total agreement from me.  It's one of the reasons I don't support Autism Speaks and Defeat Autism Now.  Aside from their focus on vaccines (which I don't agree with and won't get into here), very little of the funding actually goes to help people with autism and their families. 

Admittedly, I go back and forth between not wanting to call autism a disease and wishing it was something that could be "cured".  But in the end, my kids and husband would be fundamentally different people without autism.  I wish we could focus on figuring out ways to teach them the skills they will need to interact with the world in ways that make sense to their brains.  We don't expect blind kids to pick up a print book and read it, why can't we develop the equivalent of Braille for autistic kids?

4. Sometimes self-diagnosis is important.

This section focused on the tendency for people to equate jerky behavior with autism.  But it raised a good point that doctors still have a hard time recognizing autistic symptoms, which can lead to misdiagnosis and unnecessary (and ineffective) medication.  Granted, I get that doctors have a lot of stuff on their plate and it's hard to remember all the possible disorders out there, but that makes it even more important for people with autism (or who suspect they or their child have autism) to be assertive self-advocates and pursue proper testing.

3. People with autism are not "cold" - We actually feel too much emotion.

I've seen this with my own kids and dozens of others.  They are 100% genuine, expressing whatever emotion they happen to be feeling with no reservations.  I've also seen them retreat into ritual in order to avoid being overwhelmed.

2. We see a different world and speak a different language.

Again, this is why I think we need to concentrate on teaching methods rather than "cures".  There is huge untapped potential for seeing things in a unique way.  Who knows what solutions we could come up with if we worked together.

1. For people with autism, work is a huge hurdle.

This is one of my biggest fears.  That despite all the work I do to help my children navigate the world, they will always be stigmatized because of a label or ostracized because they're "weird".  I want them to have all the opportunities they dream of, not be stuck out of sight because they make other people uncomfortable.

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