Tuesday, November 19, 2013

Don't be negative

The whole kerfuffle at Autism Speaks over Suzanne Wright's recent piece has spread to the "venerable" Huff Post with a counter by Linda Mastroianni entitled, Autism Speaks, Your Negativity is Only Making Things Worse. 

Unfortunately AS is not much liked by anyone in the autism community for a number of legitimate reasons. This Huff counter piece is, at least, not the rantings of a neurodiversity extremist. Still, to me, it misses the point entirely: that there needs to be a concerted effort by governments to develop an action plan to deal with the rising tide of autism in North America. That needs to include support for families, both with regards to early intervention strategies, respite support and appropriate out-of-home living arrangements for adults with autism. This is Wright's argument whether you like the way she says it or not. Mastroianni doesn't address that. "I don't ever want my son growing up thinking that he is a burden to his family or to society." Your child is not the burden, but his autism is, and for many, without early intervention programs in place and universally accessible, family and society will indeed pay a price. Wright's point once again.

She also pulls out the tired old line, "If you've met one person with autism, you've met one person with autism", yet, autism has particular characteristics that do indeed make it "autism" as opposed to "Down's Syndrome" or "foot and mouth disease".  I mean....if you've met one person with CP, you've met one person with CP.  Autism is not unique in that regard.  It's a piss poor argument to use in trying to keep all individuals with autism to be painted with the same brush, furthermore, when all references to the negative aspects of living life with autism are viciously attacked as ableist propaganda by those less severely affected by the disorder. In other words, maybe your experience with autism is A OK with you and we all have to accept that, but by the same token, when others face a different reality and attempt to express it, it's not fair to go on the attack.  Mastroianni expresses her delight at the progress her autistic child is making, but fails to acknowledge that for some, progress never comes. "By no means do I want to diminish the struggles that many families deal with on a daily basis with their autistic child", she claims...but you do, madam, you do.

But everyone hates a whiner, yes?  "Instead of instilling fear into families lets instill stories of hope and perseverance", enthuses Mastroianni. Yes, dear readers, here in the land of severe disability we must not be negative.  It offends the sensibilities of the blissfully unaware. We must "persevere", "be strong", "fight the good fight", "keep on truckin'" and "inspire". And when we are tired at the end of an endless day, when words fail us as we watch our children suffer the gamut of neurological storms, when our money runs out, the insurance won't pay, the marriage breaks down, the hundredth diaper gets changed and the help cancels out, we must remain stoic and count our blessings. To cry is weakness, to become angry is selfish, to fall to our knees, capitulation. To ask for help is to further burden an already burdened system, and who are we to claim such rights for our broken children anyway?

I love my daughter with all my heart and soul. I don't think that I have ever come across anyone on this severe disability road who has not expressed the same unbounded affection for their child(ren). But, damn, it's a hard life and there are certain ugly truths to it, both for our kids and for our families. It is by the grace of whatever divine forces there are in the universe that we are able to carry the two realities...the great, life altering love and the sometimes awful pain...in our hearts. To deny the expression of the bad, to smooth over the rough edges all the time does not serve anyone: neither the parent/individual who needs kinship or the world that needs to hear and help.

4 comments:

  1. I finally just read Suzanne Wright's piece. Seems to me if the adjective "severe" had preceded every mention of autism, responses (which I haven't looked at) might have
    been somewhat different... (?)

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    1. The problem is that, for the most part, the neurodiversity crowd choose to ignore/deny the existence of severe autism, or, worse, express the view that the behaviour exhibited by those severely affected is merely an expression of their emotional state and that the parents are not dealing with them properly. It's quite shocking.

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  2. I had a guy, a Behavioral Consultant, say to me during his first visit to our home, "If you've met one person with autism, you've met one person with autism". What's funny is that this was the first time in the almost five years of doing all this that I'd heard it (I don't get out a lot).

    Didn't really bug me. But then, most catch phrases don't. It kind of slipped past one clump of ear hair, through my head, and out past the other. I figured, well, if you met one person, you met one person. What I do find curious, and have never found an answer for, is why the Autism Community has come to use this line so much. Can't quite figure it out. While no other community really went out and made a play to grab on to it.

    Anyway, that's my two cents, probably worth more like one cent in today's market. :)

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    1. Ken!! Love to hear from you. My take on that line is that it's reactionary: at one time, most people, when they heard the word "autism" would fall into stereotyped images of the disorder. I think there was a desire to expand understanding to include those whose symptoms were not "classic"...whatever that means today. It was a good idea back then. It has taken a less than desirable turn, now, as it is the go-to line for those who wish to distance themselves from the severest expressions of autism, the "black sheep" in their neurodiversity ideal of autism = genius.

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