Saturday, November 16, 2013

Neurodiversity Autistics fling the Kool-Aid and hurt their own

Autism Speaks dared to put up a piece written by Suzanne Wright, a parent of a child with autism, HERE.

And "dared to" is the word, based on the appalling comments that followed the piece...from those supposedly in the autism community.

Wright dared to write about the daily reality that her family and many families like hers face when dealing with a child who is on the severe end of the autism spectrum. It's not a pretty sight, that life. I have only ever had a glimpse of it from other bloggers, and from individuals in my own neighbourhood...like the man whose son only crawls (and that "boy" is now 20+ years old), is non-verbal, does not acknowledge anyone's presence, wears diapers, and requires full general anesthesia a couple of times a year so that they can get into his mouth to clean his teeth.

Yeah...that kind of autism. 

But damn...the comments!!! Unbelievable. And I thought our severely intellectually and physically disabled kids had it bad within the disability community. Nope...walk in the park by comparison. 

Autism has been high jacked by the high functionning types who roam far and wide singing it's praises as a gift, a benefit, another way of thinking, based on those very few with some savant abilities, or with a few quirks that they manage to sell as "endearing qualities" rather than challenging sensory issues or behaviours. For heaven's sakes, Asperger's syndrome even made it on Arthur, that once-funky-now-turned-preachy kid's cartoon.  Of course, Brain's uncle had autism too and he was a genius....of course. It was so predictable, because nothing offends the neurodiversity bunch more than talk of "intellectual disability", "self-abusive behaviour", "stimming", "meltdowns", "aggression", "seizures", and other realities that a significant percentage of those with autism suffer from. 

Oh god, don't say SUFFER!! Autism is a total party you know! Not a neurological condition! Good heavens no!! I mean, one has to be diagnosed by a doctor as autistic, but it's not a medical condition...really...it's a gift! A lucky happenstance! Kinda like Jesus, Einstein and all the other geniuses. And, incredibly, some comments refer to this honest article as ableist propaganda against "autistics". 

Neurodiversity pot calls the kettle black.

Those whose children suffer from severe autism are my kind of parents...the kind who deal with severe disability. It galls me that the neurodiversity ideologues (very much like the full-inclusion bunch) make no distinction between their experiences as individuals mildly affected by autism and their brothers and sisters who are not so fortunate. I am shocked that their head in the sand attitude toward autism realities on the far end of the spectrum allows governments to dance around the need to set up supports that directly benefit families and children dealing with this neurological disorder. I grow increasingly tired of reading glowing reports of "successful autistics" that insist the only "cure" needed for autism is an attitudinal one. It is incredibly disheartening to read so-called autistics...and even parents of children with autism...blame the parents for their child's severe challenges, accusing them of not loving or understanding their children. It's a disgrace that individuals who are working so hard to get proper supports in place have a battle for recognition to fight first within their own community.

Like Harold Doherty, I applaud Autism Speaks' "brave" move to publish an honest portrayal of autism as many families experience it: a neurological disorder that hurts their child and by extension, the family that deals with it day by day.

19 comments:

  1. Thank you for writing this, Claire. I confess to sitting stunned and speechless as I scrolled through those comments and even the ones all over my Facebook page. I am so glad that you wrote this and will share it.

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    1. I've been nailed by the neurodiversity bunch before but what occurred on that site was nothing short of despicable.

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  2. I've had my own disagreements with the "neurodiversity" crowd in the past (and the people who think they speak for everyone with a disability), but I agree with them on the matter of Austism Speaks. The main reason the adult autistic community mistrusts Autism Speaks is not only that they do not give *them* a voice but only really parents of very severely autistic children -- or rather, those willing to toe *their* line -- but that their publicity relies heavily on fear. If you make people afraid of a condition, you make them afraid of people with that condition, much as is the case with mental illness (and when you spread baseless rumours about the infectivity of certain other conditions). As the term Asperger's syndrome is being phased out in favour of plain autism or ASD, this means everyone on the Spectrum is affected by the stigma. As is also fairly well-known, AS spends very little money on services, either for severely or mildly autistic people or their families; they spend far more money on "research for a cure", which means a pre-natal test.

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    1. Matthew, as always, thanks for the thoughtful comment. I am no fan of Autism Speaks either. But most comments on the site directly and personally attacked the writer and her family, and typically touted autism as a special gift that should be celebrated. The neurodiversity people are bullies, for the most part. Furthermore, it is the voice of those individuals who are struggling with severe autism that needs to be heard...the neurodiversity ideologues are doing quite well promoting their view of autism as a gift that requires no research for cure or treatment. Harold's blog at Facing Autism in New Brunswick is the better site for details in that regard. As far as I'm concerned, the only stigma that really bothers the ND crowd is the one that might suggest they aren't all geniuses. In any case, what happened on that site was inexcusable and points to the fact that severe autism's worst enemy is actually the neurodiversity autism crowd.

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  3. Thanks for this. Was having a rough day with my son with autism and even though he's not severe--more in the middle--we have days where the "gift" of autism is nowhere to be found.

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    1. I have had the opportunity to work with a few children whose autism was less severe. They still struggled with so many things! And yes...there are good days and bad days...and there isn't always a pattern is there?

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  4. Thanks, Claire! I follow Harold's blog too and my son is somewhat similar to his. He is severely affected, non-verbal and has seizures. I had to log away from that Autism Speaks article because of the poisonous comments that refuse to acknowledge that their viewpoint is a small subset of autism. Frankly, if you can blog about autism and "celebrate" it, then I agree that you really AREN'T disabled in a profound way. But, there are immense numbers who are and cannot speak for themselves. We don't celebrate multiple sclerosis or Alzheimers disease, but we do love the people who have these disorders. Autism is no different. We love our son and have made many sacrifices for him and these people are misrepresenting our son and our life. These autism advocates are opportunists and mean-spirited ones at that.

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    1. I found the comments to be disturbing...far too personal. I am disappointed that AS did not shut down the comments after they saw what was happening. So sad.

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  5. Thank you Claire for writing this. I too was dismayed at the horrible comments made when Suzanne Wright posted that.

    In my house, autism is one gift that just keeps on giving whether we like it or not. Gifts such as severe self injury, a child that barely sleeps, severe anxiety, a child who cannot tell you what is wrong-if they are in pain-how their day went-basics like that. When I post about our "reality" of living with this, I am accused of not loving my son. Not "accepting" him as he is, not embracing this *terrific* disorder. Excuse me while I *puke*.

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    1. It makes me really sad to think that people who struggle with autism are attacked so viciously by these neurodiversity types whenever they speak up. There is no safe place to express the challenges. I just can't get over that.

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  6. Wow. I cannot even.
    My son has epilepsy. The "good" type, the kind that can be 'controlled' (ish) by medicine and doesn't cause brain damage, just ridiculous mood swings and violent tantrums and makes him sick in other ways, but in general leaves him a mildly delayed, very small and very cute 5 year old who is universally loved by adults everywhere.
    I would never, ever, EVER in a million years call the blogs or articles about severely disabled kids with epilepsy "fear mongering", "scare tactics", or "ableist". Instead, I count myself lucky and grateful every day that his seizures don't take him away from us. Every time they get out of control we see what life could be like if we couldn't control them. Epilepsy is not a different "attitude", or an "alternative state of being", it's a really crappy disease that I will always hate.
    But never, ever, ever would I criticize an article written by someone who had a child with more severe epilepsy than my own just because it doesn't mimic my experience, or criticize a movement to end epilepsy because it focuses on the worst that epilepsy has to offer, or because it puts my child into a group that contains children with significantly worse outcomes. We're all in the same boat, just different levels.
    Those comments were disgusting.

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  7. I'm your kind of parent. You have described my son in paragraph three. It's hard enough with "exclusion" from the "typical" - but then to be "excluded" from the autism community as well. What I might suggest is that those with high-functioning ASD do have social challenges as part of the diagnosis... including the deficit in empathetic functioning: for others that are very different from them, I don't know. This separation and anger is just very disheartening to me.

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    1. It really is disheartening. Would that those who could speak, would use their voices to speak honestly and helpfully along with parents who are working so hard to help their kids.

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  8. As a parent of supposedly high functioning autistic children I don't go round praising its gifts because in my experience there are many difficulties. Add severe anxiety, agoraphobia, depression, insomnia, learning difficulties, ADD/ADHD, pathological demand avoidance and sensory difficulties and what do you get - a challenging life for child and parent. It may be different from those with severe autism but it doesn't mean its easy or mild. Unfortunately it seems that some people are misrepresenting the higher functioning side of autism.

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    1. I agree that there is gross misrepresentation of the challenges faced by those who appear to be high functionning. I have spoken with individuals who are incredibly articulate, but face the sorts of problems you mention in your comment. Once again, the bullies in the neurodiversity crowd don't ever talk about such things.

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  9. Just for the sake of accuracy, Suzanne Wright isn't a parent, but a grandparent of an autistic child. She's the wife of Bob Wright, who was among other things the CEO of NBC. They are the founders of Autism Speaks.

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    1. Thanks for that! I just noticed that detail at the end of the piece. Still...same post!

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  10. I'm not that high-functioning, in spite of the fact that I can comment on a blog post. I'm an adult with autism. I know what it means to be treated as an object and a burden, and I *identify with* and *empathize with* (yes, that's right) autistic children who are experiencing the same. The description of the children in the article in question could easily refer to me, 30 years ago. I need support, myself, though I don't get it. I also need acceptance, respect, to be treated as a human being, and so do these kids. We need people to understand the difference between helping us realize our potential and making us disappear, one way or another. It's terrifying that their parents object so strongly to that.

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  11. My eldest now passes for normal and I have always and continue to do so, refuse to allow him to call himself autistic or use it as a crutch. Yes, he was once delayed but no longer is... he is not disabled. Those are the kinds of people that have hijacked it.

    I also live on the severe end. But I'm lucky and I know it. He's no longer ID, he's not behavioural and except when Dh wakes me up by snoring... I sleep through the night.

    Autism is a disability. It is not "a way of being". It in many cases is ugly. Trying to keep that message from coming out won't happen in the real world. Day in and day out the real world deals with the ugly side of autism. It's time the "passing for normal" crowd got on with their non-disabled lives and started living. I suspect the V will make that change for them and the numbers of ASD children will decrease significantly.

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