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>Not A Day, Not a Week, Not a Month: Acceptance, Appreciation, and Accommodation Begin At Home

April 2, 2010

>Autism Awareness month has begun and tomorrow is World Autism Awareness Day. Some friends on the spectrum out there on the interwebz have expressed their frustration with the whole concept, while other friends on the spectrum have jumped in wholeheartedly, advocating wearing various colors, but celebrating, advocating, speaking out about autism in whatever way we feel best suits us.

I commented to Kathleen that if we really wanted to raise awareness of autism, we’d all collectively agree to show up at our local walmarts at the same time, all 730,000 plus children and families and who knows how many autistic adults (but surely even more than that based on prevalences rates), and we’d raise awareness awfully fast! What a sight that would be, a wonderful display of the incredible diversity of humanity (although to be fair, if you’ve seen People of Walmart’s site, you already know your local walmart is the place to go to see us in our infinite variety).

But back to the serious stuff: even in this, the idea of increasing awareness, there is division. While there are a good number of parents who want to push for more awareness so that there will be acceptance, appreciation and accommodation, there are parents who want to push to create awareness so as to bring about an end to autism.

I read on a facebook friend’s wall a comment about hoping to one day look back and say, do you remember when people got autism? Oh my. My first thought was, what the hell? It isn’t catching! It isn’t something you get! Sigh. I looked at the person’s page and debated saying something, defriending, because, wow, not how I see autism at all and not something I want to really have to see, you know? I ended up saying nothing and not defriending; this isn’t someone I had really conversed with, and when I looked at their page, I saw that they had joined many groups that didn’t indicate a desire to rid the world of autistic people, so I stayed my hand. I thought, hmmm, maybe a bad choice of words? Or maybe we have as much work to do within the community as we do outside of it?

The problem is that even many well-intentioned parents (see Liane Kupferberg Carter’s post at Huff and my comment in a blog from earlier today) just don’t get it. They compare autism to diabetes and cancer; they call it evil and insist they love their children, just not the autism. As if autism  were something that were done to the child, outside the child’s neurology, an add-on, a mistake, something to be avoided. One parent over at Carter’s post opines that you wouldn’t wish an autistic kid on someone, would you? Oh my.

I wonder when I read these things what’s going on with these individuals, how they come to hold these positions. I have diabetes, and I’ve never considered it evil. It’s a disease to be managed. I have other physical illnesses, too, and they are to be managed, as well. Boy, I’d love to not have migraines, but I don’t even think of them as evil. I wonder if it’s semantics. Does evil not mean to these people what it means to me? Have we become so loose with language that it’s tossed around lightly? I don’t think so in this case. I think they mean the same thing by evil as I do, and it makes me wonder if these folks have any inkling of how the human body works? I mean, I have a long ways to go in my understanding of it, but I know enough to know that what happens in our bodies, good, bad or otherwise isn’t evil. Tragic, perhaps.

Autism isn’t something that’s done to you. It is an inseparable part of the person’s neurology. There are, it appears, verifiable differences in neural structures. There is undoubtedly an interplay of environment and genetics, but no reliable scientific evidence to think that this occurs after birth, despite the numerous anecdotes out there to the contrary. We are such fallible creatures, so incredibly capable at weaving narratives that justify our decisions and indecisions, that rewrite our histories without so much as a by-your-leave to our conscious selves. We see what we want to see, and once we believe something to be true, we’ll create a past that’s continuous with our present reality. It’s why politicians (and so many of us) will continue to deny we said something even when shown our past selves saying what we deny we said. Oh no, we’ll say, I may have said that, but what I meant was this…

Too many parents of autistic children read the words not of autistic individuals and what their experiences, perceptions, and feelings are, but the words of other parents who buy into desperation and woo, or just as bad, who conceive of autism as an enemy to be fought. We must, as parents to children on the spectrum, listen to those who have gone before our children, who experience the world in similar ways. We should look at our children and ourselves and see the intersections, the commonalities, acknowledge that broader autism phenotype, and recast autism from a disease, a scourge, a thief who steals our real children away into what it truly is: a neurological difference that at present causes significant impairments to many who are diagnosed with autism. Not all impairments can be removed, even if society shifts heaven and earth  and suddenly sees, accepts, appreciates and accommodates, but the burdens that autistic individuals bear because of an uncaring, unseeing society will be mitigated. Lives will be made better. Pain, bitterness, and despair will be reduced.

On this day, this week, this month, and every other day, we should seek to help, to reach out in compassion, to those who are still new to this journey, to gently remind them that this isn’t about them, the parents. Autism awareness is about the individual on the spectrum, about seeing them, their value, their worth, and appreciating them as they are: human in all its glorious diversity.

  1. April 2, 2010 3:41 am

    >You mention parents who you say think of autism as an add-on that is easily removed. Oddly enough, a lot of people think of autistic people as having something missing. One example of this is this e-mail forward I got once with pictures of autistic children with puzzle-piece shapes cut out of the photographs. This was supposed to indicate that because they were autistic, they had a "piece of the puzzle" missing. It not only made me feel offended, it also reminded me creepily of the Saw movies. In those movies, there is a Jigsaw killer who has a modus operandi of placing victims into traps (also euphemized as "games" and "tests") where they must perform dangerous tasks, injure themselves, or cause harm to someone else in order to escape and survive. If they don't, he cuts out a piece of the victim's flesh shaped like a puzzle-piece because they supposedly have a "piece of the puzzle" missing, which is the survival instinct.

  2. April 2, 2010 7:20 am

    >Couldnt agree more. Well said.

  3. April 2, 2010 11:02 am

    >It's great!!..................................................

  4. April 2, 2010 11:04 am

    >TAHNKS FOR YOUR SHARING~~~VERY NICE.................................................

  5. April 2, 2010 11:50 am

    >Hi, Lenore. You know, when I had read the comment about "when people got autism" I thought, oh, that would be a great day. Maybe it's the people I hang around with, but I read it as when people "got" (i.e. understood what it was) autism, not that it was an infectious disease and caught. Yes, a poor choice of words, especially in the AOA world you work against where autism is seen as a curse, a horrible thing. But, I'm sure as someone who teaches, you encounter those who, not understanding something, have it explained and then say "oh, I get it now" and later go on to say, "I got it when x explained it to me." But otherwise, I agree with all you have to say! Have a beautiful day.(Captcha word: excerso. The description of a horrible exercise – the excerso was so strenuous I hurt myself. LOL)

  6. April 2, 2010 11:59 am

    >I'm celebrating the day and the month because my son is just a great kid and although we have our frustrations I dread what a 'cure' might change of his uniqueness – I also understand those parent who feel otherwise as I see children on a daily basis who society is less willing to accept – and this is hard for families.I changed my blog header so that everyone in my world knows a bit more about why April 2 is Autism Awareness day.

  7. April 2, 2010 5:35 pm

    >You are so absolutely Right! My son's dad had the Asperger Characterists long before anyone know that he 'had something'. He was accepted for his whole self. Our son comes along and had some more distictive characterists along with developmental delays and he is an outcast. I fight for my son to be given the same opportunities as everyone else. Education (it took 5 schools) and job training/opportunities (I wrote about that today). I want to people to stop judging him and assume who he is based on his appearance (in their perception & eyes). Asperger's is part of who he is which includes how incredibly smart he is!! & how kind he is! He would never treat anyone the way he has been treated. I see that everyday with him! This is my 3rd child/son and he has taught us all so much!!! He is so Awesome! Thanks for another Great post! So glad I have finally met other AS and autism mothers. Wish I had years ago!HUGS and Happy Easter! ~ Coreen

  8. April 2, 2010 8:32 pm

    >I still kind of like the Walmart idea…:)I would love to see a fb post that said…"remember back when we didn't respect, accept, and accomodate everyone? Glad those days are over." Yes, every minute..second..of every day we all need to work towards a better place for everyone. Doing what we can, no matter where we are..

  9. April 3, 2010 3:43 am

    >Kathleen, don't tempt me!This is a great post, and I am a bit relieved other people remove "facebook friends" for small infractions such as that. I do try and ask when I am about to, then put a general reminder to not be a buffoon on my page (I am sure you've seen a few) but I wondered if I was just being "overreactive". I like the walmart idea too. SBWG that photo thing IS creepy. gah. The thing those people in the movie, for me, are missing isn't the survival instict but it's the ability to over ride their subconscious desire to avoid pain. That is totally different. Not that it makes the analogy ANY better. My captcha word is honicess. Honicess it's time to stop getting autism like a disease and to get it as a simple way of existence.

  10. April 3, 2010 4:51 pm

    >@textual fury: "The thing those people in the movie, for me, are missing isn't the survival instict but it's the ability to over ride their subconscious desire to avoid pain. That is totally different. Not that it makes the analogy ANY better."I do realize that this plays more of a role than "survival instinct," however, survival instinct is the reason Jigsaw gives to justify his cutting out the puzzle-piece-shaped piece of flesh out of their corpses.

  11. April 3, 2010 8:57 pm

    >My school is selling puzzle pieces this month, and I'm trying to get the Autism Awareness club leader to send the money to non-curebie organizations and just to direct educational support. I'm the only student who takes her club seriously, so chances are she does listen to me and will take my advice. An autism fact sheet will hopefully be posted on the bulletin boards stating that many autistics do not want to be cured and some schools are still using harmful approaches to try to normalize these individuals.

  12. April 3, 2010 9:54 pm

    >@Catatab_Tabimount: I personally disagree with Autism Awareness and the Month as how it's done these days, but I'm glad that you're using the autism awareness club to your advantage.

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