The dangers in trying to define the “face of Autism”

I’ve found over the years that the real trick in raising Autism awareness is in describing what it is to people. It’s such a diverse and complicated subject that we can find that we end up contradicting ourselves, confusing our listeners or worse, simplifying it (dumbing it down) so much that it really doesn’t do it any justice.

In my opinion, ‘spectrum’ isn’t nearly vast enough to explain all of what Autism can encompass… perhaps Autism Universe Disorder would have been more accurate. I actually read one time where some doctors said that “cloud” is more accurate than “spectrum” since it suggests a 3 dimensional range of possibilities.

Anyway, I digress…

The real problem with it being so varied is that for most of us, our own loved ones (usually children) are our point of reference. We watch the movies, read the books and do the research but the one we care about, right in front of us, is the true face of Autism in our world.

From there, we branch out to become supportive of each other, to share stories and advice and prove to be quite successful in that endeavour but ultimately we all eventually find that one person that sees Autism in a very different light than we do.

Whether we find our children to be amazing people with limitless potential or we see our children as being extremely low functioning victims of a life long paralysing disorder… we’ll find others out there that see Autism quite differently.

The real danger in this is that one will feel pity for the other, or resentment, or jealousy, or… well, you get the idea. A conflicting opinion of something of such epic importance in our lives can make for a very heated discussion if not handled with care.

To illustrate this point, I bring up a well known video that Autism Speaks once produced, where it tried to paint a picture of what Autism is.. giving it not just a face, but a rather eery voice:

httpv://www.youtube.com/watch?v=HDdcDlQVYtM
http://www.youtube.com/watch?v=HDdcDlQVYtM

Now, if you have a child that is doing well with Autism/Aspergers, or you have Autism/Aspergers yourself, you will likely be quite angered and even offended by that video. However, if you have a child that is severely low functioning due to Autism, there’s a good chance that it strikes an all too familiar chord with you.

The real tragedy in this video is that it ever tried to put a face on Autism in the first place.

The good news is that for some of us, myself included, hard work can actually help you go from agreeing with that video to not agreeing with that video as your child progresses… my son, Cameron, went from non-verbal at 2 years old to being one of the brightest and most social in his class at school.

You see, 3 years ago, I would have watched that video and understood quite well what they were attempting to do… but today, for me, this is the face of Autism that I see:


http://www.youtube.com/watch?v=zrbtWr6oVf0

I do my utmost best to not offend people as I understand how hard it can be if your child is unable to talk to you or show that they love you but I can also understand if your child is memorizing Pi to 20,000+ places. It’s a very wide spectrum… a universe wide!

The next time someone asks you what Autism is, do your very best to explain it clearly, concisely and without bias. Not for my sake, but for your own as well as the people that might hear/read what you say.

Our children are not a victim of a scary voiced predator nor are they endowed with super powers making them superior to the rest of us. But they are somewhere in between… and it’s a pretty big space in there.

The face of Autism is as unique as the face of the person that you see it in.

About Stuart Duncan

My name is Stuart Duncan, creator of http://www.stuartduncan.name. My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.

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2 Responses to The dangers in trying to define the “face of Autism”

  1. Jessica December 17, 2010 at 7:05 am #

    Great post and so true, my daughter is similar to your son in that she has gone from the chid described in that movie to an amazing teenager, with some bad days here and there 🙂 and I often hear people say “she doesn’t LOOK like she has autism.” I’m not sure what autism “looks” like but if people understood that it is as different as every child with the diagnosis life would be easier for all of us.

  2. Alysia December 17, 2010 at 11:29 am #

    Great post and so true – especially the last line. Each child is so different, with different manifestations of the disorder.
    I also liked what you said about it being hard for some people to celebrate the successes of others when they are struggling in their own home. Sometimes I hesitate to write about our success stories because I know they don’t ring true for everyone. But we have to have hope for all of us, and just as each kid is different, our progress and successes will be different too.
    thank you.

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