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 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.
Recommend
Comments (11)
Beautifully stated. As an autistic adult these attitudes are the ones that dampen World Autism Day activities for me. Autism Day needs to focus on the lives, experiences, needs, and expressions of those with autism, and the perpetual public portrayal of us as pre-pubescents does everyone a disservice in the long run.
I have to say that I agree with the first comment posted on the article you linked. That person stated that it's pretty much terrible that those who have Asperger's or HFA speak for all autistic people. That is very frustrating to me. My daughter is not on the high functioning side of the spectrum. She does not speak, she spends a lot of her time screaming in frustration/pain/who knows what else? I can fully accept differences and claim to not want to fix who she is as a person - that's one thing. But to help her make her way and acclimate herself in this world is a huge challenge that we will one day overcome. That doesn't mean that I hate autism, but I do hate what it has done to her. It essentially put her in a fog where I can't reach her.... if that makes any sense.
Again, if you've met one autistic individual... you've met ONE autistic individual..... not ALL. Comparing someone with Aspergers to someone on the low end of the spectrum is appalling.
@Morningstarrising@xanga - Well Said!!
When people say, "it's not about you" to a parent of a non-verbal child it feels like that person is saying "shut up", trying to silence the only voice and advocate their child has and quite possibly ever will have in this world.
I find it fascinating that a post about acceptance, appreciation and accommodation of individuals on the spectrum manages to elicit responses that have not a thing to do with the content of the post itself.
I'd encourage you to actually read the post. While we as parents may be on the journey with our children, it is they who do the heavy lifting, who face the greatest burdens. Reminding parents that it is indeed about the children and their needs is not in anyway a suggestion that you "shut up" but that you remember in your advocating who it is you advocate for and that you listen to what others who have already paved the way (the autistic individuals themselves) have to offer about that journey. Some of those autistic individuals were nonverbal (and some still are incapable or have tremendous difficulty with speech). And some of us parents a little further along the journey have raised nonverbal, severely impaired children into adulthood, seen them move from nonverbal to verbal, seen functional levels go from severely impaired to less impaired.
What a shame that the last two commenters missed the point.
@counterageofautism - Pretty sure I read you loud and clear because quite frankly you are not that clever.
@P1AutismMom - I'm not at all certain you do if you think I was attempting to be clever. I'd have gone for sincere, heartfelt, but not clever. When I do clever, I tend to go snarky, and a snarky that can't be mistaken for anything else.
Perhaps you can explain how your comment reflects on the content of my post? Or how I ever suggested that parents advocating for their children should shut up? How does this manage to offend: "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," exactly?
It really is impressive when you think about it. Perhaps they've named the month wrong, then? It isn't about raising awareness of the challenges that individuals on the spectrum face? Instead, are you suggesting perhaps a better name would have been Sympathy for People Dealing with Autism Month? (see, snarky, and an attempt to be clever, half-hearted, certainly, but there you go)
There's absolutely a place for having empathy for what parents face. We have inadequate support systems, an often uncaring, unfeeling community, inadequate resources, and a lack of good information on what treatments can help. We're inundated with pseudoscience and snake-oil salesmen peddling the promise of cures. We deal with a frightening future for our children; what will they do, where will they live, how will they be cared for when we are gone? And so, yes, a part of raising awareness is not just for what the individual on the spectrum deals with, but how those struggles impact their families.
However, I've read far too many parents out there who make their child's autism not about the child and not about what the child faces, but about the parents' themselves. If a parent's focus is continually on what autism costs (in whatever manner) the parent and not on the difficulties it creates for the child, then the parent has lost sight of who should be the focus: those with autism. If a parent feels the need to continually assert that autism is evil without taking stock of the fact that children and individuals with autism are going to hear that and take that to heart as calling them evil, then the theory of mind issue is certainly not on the child/individual's side.
From your post which I actually had read: along with your previous post.
"to gently remind them that this isn't about them" No need to be gentle, tell me what I as a parent should do, expert that you are.
"Autism isn't something that's done to you. It is an inseparable part of
the person's neurology"
You have stated that you believe autism is genetics mixed with trauma in utero which is a bias that forces you to discount a large number of parents who have watched their children reach developmental milestones and then for reasons yet unknown regressed into autism.
You have even gone so far as to call yourself "counterageofautism" If that isn't confrontational, I don't know what is.
From your first reply:
"I'd encourage you to actually read the post" Assurtion that we had not read it or more likely that we do not grasp the heavy intellectual content.
"What a shame that the last two commenters
missed the point." Condescending at best but more likely calling us dense.
etc. etc. etc.
@P1AutismMom - If it's a bias, at least it is a scientifically-based and scientifically validated bias and one I'm not a bit sorry for taking. You either follow the evidence where the evidence goes, one's best chance at understanding objective reality, or you rely on your own frame of reference and the chances that confirmation bias, availability heuristic and affect heuristic get in the way of getting anywhere close to objective reality. I accept that my perceptions are flawed and distorted, so looking at the scientific evidence available is my best shot at avoiding cognitive errors.
My blog Countering Age of Autism arose out of the censorship Age of Autism engages in and its need to place distorted, inaccurate information out there about autism, vaccines, etc. In addition, it propogates negative coping methods for parents that will ultimately be of little value to either the parents or their children. I'm not a bit sorry about that, either. I'd be happy to rename it any time they cease to put out inaccurate, damaging information. Until then, pretty much everything I do on that blog, whether it is a direct rebuttal of their misinformation or not stands as a counter to them. Countering misinformation is not the same as being confrontational, although if you’re the person putting out the misinformation, it’s certainly the way to interpret it if you’d prefer to settle cognitive dissonance in that way. The other way would be to consider if one’s information was wrong and to accommodate the new information.
Apparently, you decided this screenname and the blog was directly confrontational towards you. Since I don't know you, never heard of you, and to my knowledge never read you before today, I assure you that is not the case. In addition, I did not choose counterageofautism as my screenname here; it was the one given to me when I was asked if I'd like my blog over here. My screenname everywhere else is KWombles (and I actually have that screenname here on another account set up before I was asked if I would like Countering over here).
Obviously, this post hit a nerve with you, and I’m sorry that in hitting that nerve, rather than seeing the message that we should be working to change society so that our children are accepted, appreciated and accommodated, you chose instead to focus elsewhere.
I'd argue that I was neither being condescending nor calling you dense but instead communicating that you had missed the point. That doesn't mean you're dense, so I am sorry if you took it as condescending or belittling of your reading comprehension ability. It simply meant I believed you both had missed my point, a failure to communicate rather a reflection of denseness. Either you continue to miss the focus of the post or you disagree with it, but you'd have to clarify which it is. I was hoping it was the first, because who in their right mind would be against accepting, appreciating and accommodating individuals on the spectrum? Part of my argument was that if even parents of children on the spectrum manage to miss how important this is, then we as a community have a long way to go to get society to value our children.
However, I'd be more than happy to stand corrected that you did in fact get my point but disagree with it. I look forward to your clarification. If that truly is the case, then we can agree to disagree and move on with our lives satisfied that we have identified the other as ideologically opposed to ourselves. I assure you; it won't hurt my feelings at all nor cause me to harbor you any ill will. We all move through this life doing the best we can.
I appreciate that the autism debate is conducted between parents of autistic children and autism professionals and I as someone with autism feel almost unwelcome. However my autism is an integral part of who I am - not bad, not good, just me. It has nothing to do with vaccines and I am not the only adult in my family with aspergers. None of the younger family members who had MMR show any signs of ASDs some of us older ones do.
We do not need non-autistics to speak for us and having a child with an ASD does not give you the right to pontificate on autism.
@Springingtiger - Are you speaking to everyone here?
If you were directing that comment towards me: I'm not speaking for you, for anyone other than my children. It's my job to stand up and speak for them until they can speak for themselves. Until then, I'm going to be vocal on advocating for them, for acceptance, appreciation, and accommodation of all people on the spectrum, including them. I'm going to work towards better support for them and others who need support. I'm not going to do it alone, but instead within an allied network of likeminded parents and adults on the spectrum. You're more than welcome to add your voice to the network.
@counterageofautism - It was directed at - "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." - the parents who think my opinions should be discounted because they disagree. Also they should be aware that their child does not necessarily think as they do but they assume they can read their child's mind and form opinions based on that mind read. They have a definition of normal and refuse to accept those who won't behave according to that definition - just because they played with other kids and hugged their mums is no reason to expect me to. Personally I think the desperate need of some people to have their kids display emotion is probably a developmental need - emotions are largely irrelevant and displaying them unnecessary. Rant over.
Personally I tend to agree with you - largely because I disagree with the closed minds at Age of Autism who want to cure their kids' autism because they - rather than the kids - feel bad or get embarrassed.