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By Brenda Kosky-Deskin

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Autism Choices: Safety vs Stigma; Content vs Conspicuous

May 2, 2013   Comments (1)

Advocacy & Awareness Advocacy Advice General Interest

    

adults with autism, autistic, autismWe all have to make choices in life. In doing so, most of us go through a similar thought process of identifying and then weighing the pros and cons of our options to arrive at a decision that makes the most sense.

As Autism Parents, my husband and I have had to make more than our share of decisions with respect to our son, Michael, and his Autism. These have ranged from what type of therapy he should receive, to what medications he should take, and the list goes on. Some of these decisions have been easier to make – "no brainers", if you will – and others not so simple or straightforward.

One such contentious issue focuses on Michael's attachment to his doll, Kiki, to his cherished "blankie" and to Barney the dinosaur and other plush toys that he loves but that are traditionally associated with those much younger than my 18-year-old son. Yet Michael continues to adore these treasured items and takes great comfort in having them with him. Many professionals have suggested that my son is too old to be carrying around such items – especially in public – and that we shouldn't allow it. They encourage us to instead focus on introducing him to more age-appropriate items and interests.

While I am almost always 100% on board with our consultants' advice, when it comes to this issue, I just can't be swayed. Here are my reasons...

  • I'm all for trying to expand Michael's horizons, but more often than not, he's simply not interested. Let's face it... people with Autism don't like change. And if we are once in a while able to get him onto something novel, it's after months have gone by to give him enough time for the necessary repeated exposure. So, by the time he actually likes something new, it's already passé as his 'age-appropriate peers' have already moved on to something else.
  • Do I get looks when my son is out in public with a doll? Of course. Do I care? No. There used to be a time when I did care – a lot – but I've moved beyond this. Life is too short. If people can't deal with it, it's their problem; not mine.
  • It's not like Michael is on the cusp of being 'normal' (as much as it pains me to even use this word), and that carrying these things is the only thing that sets him apart from those who are neurotypical. Michael is significantly impacted by Autism and I've come to terms with that. Liking juvenile toys is just one of many, many things that make him different from other 18-year-olds.
  • In fact, the sight of a six-foot-tall young man holding a Barney doll is something that I personally believe is actually helpful in garnering understanding from a mostly uneducated public. Many might not recognize "Autism" from one of Michael's sudden yelps, his insistence on walking around a planter in the mall three times, or his refusal to sit on a bench in a restaurant. (He'll only sit on a chair.) But, most will realize that 'something's up' when they see him clutching a doll. And it is my hope and my belief that this in turn promotes greater understanding and encourages people to be more accommodating.

Yet another decision we have had to recently make for Michael has to do with some new compulsive tendencies that are causing him to suddenly bolt away so he can can satisfy his almost constant urge to re-touch things – even if it means rushing into traffic, walking on the edge of a bridge or doing something equally hazardous. Our behavioral consultant came to the rescue with what I thought was an ingenious solution... Teach Michael to respond immediately to a specific word we come up with so that when he hears it, he instantly freezes on the spot and counts to ten. So, we came with the word – "freeze" – and began to teach Michael the drill. The good news... he actually likes the routine and learned to comply with it very quickly. The ?bad? news... every time he reaches "ten" he blurts out an emphatic and enthusiastic "blast-off" – his own personal touch, most likely echoing something he has seen in one of the many videos he watches. So the upshot is that while the treatment seems to be effective in helping keep Michael out of harm's way, that blast-off is firmly ingrained into the risk-reducing routine...  talk about social stigma!

Is our "freeze program" the right thing to do, knowing it is pretty much guaranteed to raise some eyebrows from curious passersby when Michael is out in public? I weigh all of the facts and ask myself the more important question, "What's best for Michael? In the end, I choose safety over stigma, just like I choose content versus conspicuous by allowing Kiki to accompany him on outings. Because that's what's best for Michael.

May 2, 2013   Comments (1)

Advocacy & Awareness Advocacy Advice General Interest

Christian said on July 03, 2013

This article is very interesting, To be completely honest, if anyone came up to me and said that understanding of Autism has significantly gotten better. I would literally laugh in their face. I was diagnosed with autism at around 13/14, quite low on the spectrum. The doctor sent the report to my school to let them know.Once that happened, My school life went to hell. Teachers were incredibly patronising. They would do silly things like come over to me after they had explained work, look down on me and start repeating what they just said! It even happened in my family. I’m still treated like a kid and have told people countless times to treat me properly. I now wish to be alone most of the time because I’m sick of people treating me unfairly, which, ironically, makes me look more autistic. I wish I never agreed to head to hospital that day. Biggest regret of my life.

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