This post is cross-posted from my individual blog Shaping Clay. - MSMjr
It doesn't take long in this community (the autism one) to develop a sense of the divide between parents and adult activists. It also doesn't take long to develop a sense of the difference between adult activists who are
working for social justice change and those who are asserting their identity and looking for community with others like themselves. The two groups aren't mutually exclusive by nature, and as we as participants in the community seek to find our place, we start to see who is doing what in each of these communities. This is natural; this is fine.
I'm not here to complain about it.
It's also true, though, that there is a rift between the people who are attempting to increase access needs and to work on civil rights and a group of people who want to focus *exclusively* on identity. The latter group tends to be privileged in some way, either due to a combination of race and socioeconomic status or because they received attention and guidance that allowed them to assimilate into the larger culture. They often feel lost and alone, not understanding why most of the people they surround themselves fail to identify with them. They need community.
I'm not here to complain about that, either. Those of us that are diagnosed as adults often have long histories of isolation and depression that we have not shared with others. Even when our surface scripts have allowed us to attain a degree of professional success, we often find ourselves sacrificing family or personal relationships to do it. When we are finally diagnosed, late in life, we drink in the community that we find deeply and we seek nourishment in it. This is natural; this is fine.
Unfortunately, though, there is a tendency to divide "us" from "them" in our community. Many parents view "Aspies" as something apart from their children, not something that their children could one day grow into. They assume, because we are articulate and we have learned the rules, that we have "overcome" challenges. This is a ridiculous and dangerous assumption. No doubt there are some members of the community whose personal challenges are greater than others. No doubt there are members of our community who do not fully grasp the extent of the challenges faced by others because they themselves have not faced them or known members of the community who face them.
This is to be expected, to some extent, but the solution is not to divide our community into two camps. Nor is it to dismiss "Aspies" as having some other identity. To do this is to further disenfranchise a group who has already faced social disenfranchisement for their entire lives (even if they have not faced political disenfranchisement). It creates a kind of disability ghetto where any remaining challenges to their success are the individual personal failing of the "Aspie", who is assumed to be assimilated into the allistic hegemony and therefore "successful." Such a division is neither helpful nor useful. It is a way of directing resources toward one demographic at the cost of another, and it falsely assumes that the current presentation and status of the "Aspie"s symptoms, traits, or whatever you want to call them--let's just settle for characteristics--it's the assumption that the presentation of those characteristics in the adult before you is the static.
This is a dangerous and false assumption, too. One that does not take into account the complex and difficult journey that is life for all of us, autistic or allistic. It is an assumption that fails to acknowledge the basic fact that autism is a developmental disability--a difference in the rate and kind of growth a person experiences over their life. It's not a developmental halt.
It's dangerous because it denies adults access and it leads parents to deny that their children will one day be autonomous decision makers, guiding their adult lives with only the supports they choose and achieving goals that they set for themselves.
If you're reading this and you just said, "but my kid won't have those things, you just don't understand because you haven't seen him," then you're part of the problem. It is true that there are members of our community that will always need some form of assistance, that can not live alone. This does not mean that they can not live independently or that they will not be able to make their own choices.
I'm not saying that your child does not have challenges, though. And I'm also not saying that your child absolutely will achieve anything. Just that the assumption has to be there that, given the right supports and tools, it will be possible. It will definitely not be possible, though, if that child is immersed in an environment that assumes that successful autistics are not them. I'm saying that supporting autistic children requires showing them Autistic adults who are saying "We Are Like Your Child".
It requires more than that, though. It requires those of us that have achieved our goals to speak out about the challenges we have faced along the way, including those that we still face on a daily basis. It requires us to acknowledge the non-autism traumas we have experienced because of the differences in our emotional and cognitive developments, including the times we were excluded, abused, or marginalized by authority figures.
It also requires us to stop holding ourselves apart. Parents of children with extreme challenges and/or co-existing conditions are not the only ones creating this divide. The term "Aspie" has come to be a way for those of us who want to talk about our experiences to separate ourselves from "those" Autistics. It allows us an identity that has been sanitized for our allistic audience--a way of performing eccentricity instead of disability, of showing we are "like them" but "still employable".
This is disgusting.
I realize that not everyone who throws out the term "Aspie" means it in this supremecist way, and I realize that not everyone with an Asperger's diagnosis is comfortable with the Autistic identity. When I was first diagnosed, I had two opinions I was weighing--one that ignored my synesthesia as a "neurological quirk" and diagnosed me with Asperger's, and another that asserted that my synesthesia was an extreme sensory processing issue that "increased" my diagnosis. For some time, I looked at my ability to finish my schooling and my track record of providing my own basic means of survival and I said to myself that it would be appropriative or demeaning for me to seize upon "Autistic" for myself when so many other people had such greater challenges to face.
I was wrong. I was wrong then, and the well-meaning people who think the same way I did four or five years ago are wrong now. It is precisely because there are people who need supports that we must seize the Autistic identity. We can't stop there, though--if we did, we would only be a supremacist faction within the community. We have to accept that We are like your children. We have to come to terms with the things that we did to ourselves and the things that were done to us, and we have to put forward a collective effort to create a community where there is outreach, where we don't simply assert that children will be able to grow into autonomous decision makers, we show how it happens.
Each and every one of us should be proud to be Autistic, and we should be mentoring Autistic children ourselves. Not necessarily working with them professionally--not all of us have those talents--but at least finding the Autistics in our lives and our communities and connecting with them. We can be Big Brothers/Big Sisters, we can be involved in church programs (those of us who are religious), and we can simply connect to and share our stories with the people in our families who have Autistic children.
Leaving the Aspie label behind is not just a matter of altruism, either. "Aspie" is a diminutive form, and it diminishes us to accept it as an identifier. It reinforces, through its connotations, a sense that we are somehow naive about the world or that we lack something that we just won't ever develop. Even as it sanitizes us and presents us as "employable" or "no longer disabled", it provides an avenue for others to view us as highly specialized children with adult work efforts (at worst) or sexless workaholic nerds whose interior lives are dominated by narrowly tailored hobbies and not the business of adult life (at best). We should accept neither.
I want to close this essay by directly addressing a few objections that people who know me might raise. I am not writing this to blame parents, I am writing it to discuss ways in which all of us might improve. If you're currently part of the problem, I'm not mad at you, I just want you to change. Similarly, if you're doing a lot of things right, like protecting your child's privacy until he/she is able to write zir experiences for zirself, good. If you doubt that your child will ever be able to read at the level you're writing at but you stay your hand just in case, then I think that maybe you're a pessimist, but your behavior shows that you are on the side of the angels in this debate. If, however, you read this and went "You just don't know because..." or "I'm not like that, I just...", then I can only say this:
Don't you dare "Aspie" me. I know who I am and I know what I had to do to get the skills necessary to perform your "eccentric but functional" perception of me. It is a performance, though. All of this is (the blog, my books, personal appearances). It is held together with duct tape, anti-anxiety meds, and frequent trips to a dark and quiet room.
Don't presume to know my past or the range of my obstacles.
Tomorrow: The Myth of "Overcoming"
I completely agree with literally everything in this fabulous, fabulous piece, but still have a lingering (personally-relevant) question/issue:ReplyDelete
I'm guilty of preferring to use "Aspie" instead of "autistic" when talking to NT people, especially adults and authority figures. But it's not because I prefer the term. I feel that, for me, "autistic" is a more personally, socially, and politically appropriate label. But in situations where I have to deal with NT people, I know that I read relatively "high-functioning," "verbal," even "sociable" to them. And I find that if I verbally identify as "autistic" in front of/around most NT people, they usually assume that I'm "exaggerating," or even completely mistaken about my life/self/disability. But if I identify myself has being/having Asperger's, people's reactions are completely different, and usually much less suspicious/argumentative.
Obviously, this has to do with inaccurate and discriminatory ideas of what it means to be autistic, and intellectually, I'm all for messing with people's assumptions about who autistic people are. But emotionally, I often just don't have it in me to either completely justify my entire diagnosis to random fuckers, or to sit back while they tell me how I "don't count" as autistic (something I've had to work hard to stop telling myself).
I feel uncomfortable just walking around using labels I don't like, that perpetuate stereotypes and oppression that I despise, and that have direct negative effects on my quality of life. But I honestly have yet to figure out an alternative; when I get stressed and pressured by other people, I lose language and meltdown, and I'm especially prone to this when people question my identity/disabilities. I don't think, in those situations, I am even capable of speaking coherently enough to change anyone's mind about what "autistic" means. But I want to be able to call myself who I am. So I don't know what to do. Any and all suggestions/advice welcome; I've been puzzling over this in my head for a while, and this post made me think real hard on it.
This is so well articulated. I know my blog focuses on identity and community and so I'm likely "part of the problem," but I have always felt a weird aversion to the Aspie lingo, and I think you've just described exactly why, in a way I haven't yet been able to explain. Thanks very much for giving me so much to think about.ReplyDelete
Hi, I'm a parent. Your post resonates with me. Thanks for sharing it. My son (5-yrs) has an autistic diagnosis along with some others. His development has been significantly impacted but all means no halted. But that is not who my son is...his diagnoses. He is a boy that loves to be tickled, run, jump and more... But at this time he is non-speaking --- He may not be able to have any functional language come from his mouth BUT with his speech generating device, he is verbal. Now his vocabulary still needs to grow and his desire to communication improved but he has language. We work very hard to provide him with the opportunities and supports to be successful in his environment. This is exactly what I desire for my other two sons too and I don't think any of them will have same "pathway" along life. I'm a parent that is looking for guidance and input. I'd like to limit the judgment that I often read about as it isn't very constructive but then again it can be enlightening too. I recognize adults on the spectrum and hope that we could come together more with each other. I'm looking for experiences of others so that I can help create the right supports for my kiddo. Current on my goal list is to understand how to teach a non-speaking individual how to read....I believe he will and it will probably be a trial and adjust and revise process but having some more insights from Adults in my son's community would be such an asset. Leveraging ourselves together could provide supports across the population. Suggestions on how to make a connection ...I'd love to make one. Thanks again.ReplyDelete
I REALLY liked your blog post. That said, I wish it hadn't centered around the Aspie debate because I'd love to show the whole 'we are like your child' bit to parents of recently diagnosed children, who probably don't even know there is a debate about Aspies (or what the word means, or possibly even that there was a diagnosis of Asperger's Syndrome prior to the most recent DSM). And I think this whole idea of 'my child isn't like you' isn't limited just to Aspies - many people/parents apply it to any successful autistic person.ReplyDelete
I run a website explaining autism and I'd love to link to a version that addresses that issue, of the disconnect between how parents view their children and adults on the spectrum as a whole. Would you be willing to guest write an article, or do you have any other blog posts I could link to that focus specifically on that?
If you do and/or are interested, please email me at email@example.com. Thanks so much!!!
I love this post, thank so much. I feel similarly about autism parents and the way that they often try to call their child "high functioning" as a way of trying to distinguish their child from all those OTHER "more" autistic children. I know many of them arent even doing it consciously, or thinking through what that sort of "otherness" language and mentality does, and I know so often it comes from a desire to protect their children from the judgement that comes from people around the label autism, but its still just not right and I have committed not using terms like high and low functioning with my daughter. When people ask me "what kind" of autism she has or "where she is on the spectrum", looking for those sorts of qualifiers, I instead redirect them and talk about her strengths and the challenges she faces, and remind them that there is now one diagnosis: autism.ReplyDelete
Also, I LOVE that you are encouraging autistic adults to mentor kiddos with ASD- I am hoping to get to know more autistic women who could do just that for my daughter when the time is right. And I guess I must be the odd parent out because I dont read these essays and think, "well, thats not like my daughter", I think, "how blessed I am to have a chance to hear a little more of what might be going on for her". So thanks for sharing!
Great post. I learned I was autistic only after my son was diagnosed. Suddenly there was a framework in which practically my entire life made sense.ReplyDelete
I recently gave a talk at The Warren Center here in Dallas, and the people were hungry to learn what it feels like to be autistic "from the inside." People hear descriptions of autism all the time, but rarely to they get it properly defined, as someone who is autistic can do.
Where is your promised article on "The Myth of 'Overcoming'?"ReplyDelete
I agree with almost all of the post except this part:ReplyDelete
" Leaving the Aspie label behind is not just a matter of altruism, either. "Aspie" is a diminutive form, and it diminishes us to accept it as an identifier. It reinforces, through its connotations, a sense that we are somehow naive about the world or that we lack something that we just won't ever develop. Even as it sanitizes us and presents us as "employable" or "no longer disabled", it provides an avenue for others to view us as highly specialized children with adult work efforts (at worst) or sexless workaholic nerds whose interior lives are dominated by narrowly tailored hobbies and not the business of adult life (at best). We should accept neither."
This sounds a bit prescriptive and victim-blaming to me, like while I don't define myself as an aspie anymore, I still sometimes use "autie" which according to that paragraph, I guess I shouldn't use either, I think everyone should be able to choose their preffered word as self descriptor, as long as they aren't oppressing or dismissing others by this choice of words.
Some of us also like to present in way, or like things that are considered childish, we shouldn't be blamed fot that.
If people consider us child-like for this kind of ridiculous reasons, they deserve the blame, not us.