Tuesday, July 1, 2014

Awareness, Acceptance, Accommodations and ....

Autism Awareness ... Acceptance ... Accommodations ... and

I was recently reading a great blog post by Meriah Nichols called Coming to Terms with Disability in my Life and it got me thinking about all the buzz in the autism community about whether we should be trying for "Autism Awareness" or "Autism Acceptance".  Personally I have always said "both" but after reading this blog post, I got to thinking that we need to add at least another one -- "Autism Accommodations".

First off, we DO need to be aware that autism is out there.  Despite all the fanfare and promotions that Autism Speaks provides (personally I have some issues with them, but still think that they have done some good) there are still a LOT of people out there that are not aware what autism looks like or how different all those folks are from each other.

For this reason, I do not think promoting Autism Awareness is wrong.  I think it is still necessary.

And yet, so many higher functioning folks out there just need to be accepted as they are.  They have learned to cope with their brain wiring.  Temple Grandin has said that she would not get rid of her autism if she could.  I don't blame her.  She has come a long way and accomplished so much with her gifts.  For her, autism has been a gift.  Albeit she had some serious difficulties to overcome, but she did overcome them.  Why should she change?  She should be accepted as she is.

For this reason, I applaud the Autism Acceptance folks. 

I still think a lot of the neuro-diversity (ND) movement is inherently wrong.  I don't think that just having autism insures that you are "gifted".  For every Temple out there, there is at least one Joe (who struggles to find a minimum wage job with a coach just so he can have a modicum of independence) and probably one Alan (someone who will never be able to live independently and will need round the clock care from someone or most likely several someones).

For this reason, I think we need to add Autism Accommodation into the mix.

Joe needs accommodations.  For him, this will most likely mean a coach to help him get the hang of a menial job.  But once he gets the hang of this job, he will probably do it happily and without assistance for years to come.  We need menial labor.  Like it or not, a society that is composed entirely of college graduates unwilling to do menial labor will not survive. 

Even if ever single one of those college students works as a dishwasher/busboy/waiter/clerk/bagger during school, there will not be enough.  And there will always be those that financially do not need to do the work or are unwilling or unable to work in those type of jobs while in school.

But what about the Alans out there?  What about those kiddos that cannot hope to live independently?  Can we hope for more than accommodation for them?  Is it so selfish on my part that I still want a "cure" for Alan. 

  • Note that I use the term "cure" in quotes.  I do not believe he is diseased, but I do firmly believe that there is some fundamental bad wiring in his brain.  I use the term "cure" because it is easier than typing out "correcting whatever is wrong with Alan's brain through whatever medical or therapeutic or pharmacological means become available in his lifetime" every time I want to express this feeling!!
What can we use for a buzzword for the Alans out there?  We need something for them too.  They are the ones that suffer the most with autism.  But because they can't get online and blog about how they feel when they can't express themselves, adult autistics assume the Alans of the world feel as they felt growing up.  How can they be sure?  I am pretty sure Joe doesn't think about his autism the same way Alan thinks about his.  I can't be positive of course, but considering that I think about my childhood differently than my siblings and we were all "neuro-typical", I think it is safe to say that two boyz with similar but not identical diagnoses will think about things differently. 

So why are folks in the ND movement convinced that they know what my child is thinking better than I do?  I am the first to admit, I have no clue what Alan is thinking most of the time.  I know that he is thinking.  I know he is processing his environment and trying to adapt it to accommodate his wants and needs. 

There is so much that needs to be changed to accommodate him that I can't help but think it would be easier to change him.  Not to mention, even if we could change every aspect of his environment to accommodate him, it still wouldn't be enough.  He cannot live alone and I can't help but think that is a very lonely way to grow up.  If that means that ND folks think I am trying to change the essence of him, then so be it.  I don't completely understand why the ND folks are so convinced that because I want to "cure" him, it means I don't love him.

14 comments:

  1. I think it is because you love him, and Joe, that you advocate for awareness that not all people with ASD are the same and that accommodations need to be thought of and implemented. Yet that accommodation will in fact have to be different and modified for each individual. I always wonder if the mother whose child has cancer or MS is accused of not loving her child because she wants to cure them.

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  2. Cancer can literally be excised and/or cured, if caught early enough. MS effects motor planning. Neither is an integral part of who an individual is. So having autism is fundamentally different from having cancer or MS.

    You cannot separate the kid from the autism, because they are one and the same. Saying you want the autism cured/excised is basically saying you don't love or want the kid you've got -- you want a completely different kid. One that isn't autistic.

    Have you read Andrew Solomon's "Far From the Tree"? It's non-fiction, about parents who are raising a kid who are very, very different from themselves (with autism, DS, who are gay or musical prodigies, etc.) and the concept of horizontal identity which is beautifully explained here:

    http://m.newyorker.com/arts/critics/books/2012/11/19/121119crbo_books_heller?currentPage=all

    It more or less boils down to the fact that, very often, what a loving, devoted and well-intentioned parent sees as their kid's tragedy -- autism, deafness, homosexuality -- their kid sees as their identity, in a GOOD way. The gay kid sees his/her gayness as an integral part of who they are and doesn't want to be straight (not that it's even possible).

    I'm not autistic, so I've no idea what it feels like to be autistic. But every single autistic adult was once an autistic child -- so I'm inclined to take an autistic grownup's word for it when they object to trying to "cure" autism.

    How loved do you think a gay kid feels when his religious parents, with the very best if intentions, adopt a Hate the Sin (gayness), Love the Sinner (their son) approach? Do you think that kid feels loved if he knows his parents are trying to pray-the-gay-away with the best of intentions, to spare him Eternity in Hell?!?

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  3. Since my older (verbal) son has told me that he wishes he didn't have autism, I think it is safe to assume that my younger, nonverbal son (with so many more difficulties because of autism) feels the same. My primary objection to the ND folks is that they assume EVERYONE feels the same as they do and they are all different -- so why can't some other autistics feel different?

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  4. In your analogy you are assuming that the parents and children are at odds. If Joe were to tell me he likes his autism despite his difficulties, I would never try to cure him. But since he is unable to live a full life (in HIS opinion), I will continue to try to help him.

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    1. I didn't mean to suggest that parents are always at odds with their autistic kid -- Joe's absolutely entitled to want help and you're 100% right to do everything possible to ensure he gets it. It's impossible to know what a non-conventionally communicating kid like your younger son feels about his autism. And, you're right, surely there folks with autism who'd prefer not to have it.

      Admittedly, I come with a bit of a bias – I grew up as a faculty kid (half my parents’ faculty colleagues would probably be diagnosed on the spectrum, had they been born 20-40 yrs earlier; half their current grad students are), have a nephew on the spectrum and a kindy-aged girl whose BFFs are on the spectrum (her cousin, and a Montessori classmate, K). Around rather a lot of people on the spectrum who struggle but manage, as nobody’s trying to force them to be something they’re not.

      The way K is treated kills me. If my kid wants to spend all day in the play kitchen or decides to skip snack, it’s fine – she’s exercising free will. If K wants to spend all day in the play kitchen or not eat snack, he’s “non-compliant” and his aide MAKES him leave the kitchen/eat a snack. ABA pullouts are Skinnerian conditioning bordering on torture. (I’m pretty sure that if somebody attempted to make my kid sit in a chair and touch her nose 20x times for a Skittle, she’d do it a few times and wander off due to boredom, tiredness, dislike of red Skittles or because she’s FOUR. Make her do it 15x more? Epic tantrum, maybe she’d push the therapist out of the way, throw the Skittle, etc. K’s a sweet kid and so far as I can tell, his frustration and aggression is justified. His parents are thrilled he gets several hours of ABA a day, fully aware that he hates it. I'm guessing this sort of thing that results in angry autistic adults).

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    2. You are absolutely right Jane and I abhor that kind of ABA. When Joe was 3 we did a casual home therapy for him that was sort of ABA but they didnt worry about "mastery" as much. It worked like a charm for him and was totally sold on ABA and then I saw the way it is frequently done (as you described) and hated it. Not too surprisingly the younger son didn't do as well with ABA.

      I just have a hard time with most adult autistics telling me I must hate my son because I want him "cured". I just want him to have a life. I don't think watching videos, barely leaving the house, not talking and maybe someday being institutionalized because my hubby and I can no longer care for him is much of a life.

      Sorry for sporatic replies -- internet is down and I'm doing it all on the phone! aaaaarrrrrrgggggggghhhh

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  5. I think what you've highlighted here is that every child and adult with autism is an individual and has different needs, some are happy the way they are, but some are not, some live fulfilled and independent lives, while others need a lot of help, and some do better if their difficulties are alleviated. Not necessarily their autism, but the problems associated with it: like severe anxiety x

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    1. Yes, thank you, Looking for Blue Sky. That is exactly what I thought the original blog post said.

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  6. I have one son with autism that will never live on his own or hold a job and one that might with some accommodations made. So I totally understand. So much to think about. I know you and I love and advocate fiercely for our guys and that is proof for anyone of deep love. Blessings!

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    1. Thanks, Susan. I know you get it.

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  7. I am in the process of reading Temple Grandin's book "The Autistic Brain". It is fascinating and addresses some of the issues you mention in this post. New brain imaging and other tests are able to figure out the answers to some of your questions, but they aren't available to the public just yet! It's exciting to think about improvements that could be possible for understanding our kids in the near future

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  8. Great Post! Isn't it insulting to autistic people to assume that they don't want the same things out of life the rest of us do? Everyone I know wants the ability to live independently, a way to meaningfully participate in their communities, a job with a reasonable salary, deep friendships, an ability to communicate and a romantic partner. In many cases (and I emphasize not all cases) autism itself is the barrier to those things. All the acceptance and awareness in the world will not allow a person with severe autism those things by which the rest of us measure quality of life. So if I want my daughter to have a good quality of life how could that means I don't love her?

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  9. Thanks Sylvia and Shanti. Sylvia, I need to get that book. I have a hard time reading non-fiction -- too much like "reality TV" for me! ;-) -- but I do like and admire Temple. Yes, Shanti, that is exactly what I was trying to say!

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