Whose Planet Is It Anyway?

Thursday, June 07, 2007

Our Problem with No Name

Published in 1963, The Feminine Mystique, by Betty Friedan, described a sense of unease among American women. Even if they lived in comfortable middle-class suburban neighborhoods and had caring husbands who worked diligently to provide for their needs, many women still felt unhappy, although they often could not articulate why. They had a general sense that there ought to be more to a woman's life than keeping the house clean and the family well-fed, but they were uncomfortable discussing these thoughts with their husbands, who might feel unappreciated and resentful, and who probably wouldn't understand anyway. Betty Friedan called this predicament "the problem with no name" because there was so much silence surrounding women's lack of meaningful life choices.

In the autistic community today, we are confronted by our own problem with no name. Caring parents, in accordance with experts' recommendations, are spending large amounts of time and money to provide a variety of services for their children. Despite all their efforts, however, their children's options in life are severely restricted by a society that does not respect or value neurological diversity. When autistic adults speak out about their desire for greater acceptance and opportunities, some parents feel unappreciated and resentful. Some autistics have the attitude that parents, no matter how supportive, can't possibly understand their feelings and needs.

What's being overlooked amidst all the misunderstanding and resentment is that there is a crucial difference between the autistic civil rights movement and other historical struggles for equal rights: Autism is a very recent cultural construct. It's not like gender, which always has been seen as a major and immutable human difference (except as to the small number of intersexed and transgender folks, who still are far from achieving full social acceptance). It's not like race either, because society's racial categories have existed for hundreds of years and because the vast majority of parents are categorized by society as belonging to the same race as their children.

Some autistic activists contend that neurodiversity is solely a matter of disability rights and that parents who have no diagnosis are not part of the autistic community. I strongly disagree with that point of view. The current autism spectrum categories, which became part of the DSM-IV in 1994, are extremely vague and arbitrary on how to identify an autistic person. When making a diagnosis, psychologists look at characteristic childhood behaviors such as hand-flapping and spinning. Because such behaviors are less likely to be observed in adults, it is often difficult for a psychologist to determine whether an adult is autistic without detailed information about his or her childhood development. Also, because useful services for autistic adults are few and far between, adults often have no reason to seek a diagnosis, even if they recognize the possibility that they may be autistic—and, of course, there are many who do not recognize it.

The inevitable consequence of all this diagnostic ambiguity is that, although there are parents who had behavioral patterns and cognitive traits quite similar to their autistic children when they were growing up, most of these parents have not been identified as autistic themselves. They may—or may not—have enough autistic traits to fall within the DSM-IV criteria, but they and their children have significant neurological similarities. In my view, these parents and their autistic children are part of the same genetically related minority group—the same "tribe," so to speak. To that extent, society's prejudice against autistics is a form of racism, and the parents who want to join the struggle against this prejudice should be welcomed as members of the autistic community, whether or not they are perceived as having a disability.

The term Broader Autistic Phenotype (BAP) sometimes is used to describe individuals who have autistic traits that are not deemed to be clinically significant. For lack of any other term, I'll use BAP in this post to refer to the "tribe" of families that have multiple autistic and close-to-autistic members.

Because BAP families do not have obvious racial characteristics such as skin color, it's all too easy for the parents, most of whom grew up thinking of themselves as "normal," to be persuaded that their child is suffering from a mysterious affliction and that they must defer to the experts' advice on what to do about it. They are taught to mistrust their own instinctive knowledge of how to raise their children, as well as the familial wisdom passed down through generations of BAP ancestors, and to rely instead on therapists.

A while ago, Joey's Mom wrote a comment on one of my posts describing how some parents can communicate with their autistic children in ways that often go unrecognized by modern society:

I've always wondered about the "autistic communication" thing. I know my son has a terribly difficult time with language, but even when he wasn't pointing or speaking, we still understood him and had understanding with him. We now know it wasn't the "normal" kind of communication people have, but it was definitely there, and is still there—little body movements, cues, clues.

Some parents of autistic children have an innate understanding of their children's feelings and needs. We should not be treating these parents as outsiders or adversaries; instead, we should encourage them to see themselves as part of our community and to take an active role in the process of defining our "tribe."

Allowing our community to be defined exclusively by psychologists forfeits the ability to define ourselves as other minority groups do. When some of us argue that the autistic community should consist only of diagnosed autistics, so that we can be in charge of our own destiny, what they're really saying is that we can be autistic only if a psychologist tells us we are. They're so worried about parents having any influence in our community that they'll happily turn over complete control to the psychologists, while deluding themselves that this will result in greater self-determination. I've noticed that even people who voluntarily choose to identify with the autistic community often use the term "self-diagnosed," meaning that after comparing their behavior to the DSM-IV criteria, they decided that it matched. There is no recognition anywhere that we have a right to define ourselves as part of a cohesive social minority group. If the diagnostic criteria were to be changed tomorrow, many of us would meekly go and visit a psychologist and ask if we were still autistic. That is the complete antithesis of self-determination.

Our cultural heritage is being taken from us, our children are being denied equal rights and taught self-loathing, our governments are openly targeting our community for genocide—and we don't even know who we are.



  • Are you talking about the people who said that autistics ("diagnosed" or not) should be the ones making the decisions in this community (which should consist of more than autistics)? (Which would be, say, Larry, Joel, etc., as far as I can tell, with various variations depending on personal philosophies.)

    Or are you talking about the sort of people who want to restrict the definition of autistic people -- and those who can 'speak for' autistic people -- to those who are diagnosed by professionals? (I can come up with people who fit one or the other half of this sentence, I'm having real trouble coming up with people who think both, although they might exist.)

    By Blogger ballastexistenz, at 4:07 AM  

  • I think we all speak for ourselves because at the moment we try to speak for someone else we will always get it wrong to some degree.

    You brought up some interesting ideas about particular parents having a sort of connection, empathy, call it what you will with their autistic children.

    It is interesting also that you bring of this book of Betty Friedans. I guess we cannot forget all the women who worked during the wars such as the women called "Rosie the rivetters" who worked on the war ships.
    I came from a family of women who worked outside the home and my great grandmother born in 1800's worked and raised two daughters by herself. My grandmother worked most of her life also and worked at the state capitol of california.
    And she is now 97.
    My grandmother always had a room for my Uncle Jack who was independent and yet very unusual as he had myotonic dystropy that was not diagnosed until he was 50. He had autistic like traits that the family just accepted as him.

    By Blogger Vicky, at 8:36 AM  

  • Amanda: I'm talking about both groups, actually, and this post isn't meant as a response to Larry or Joel or anyone else involved in the recent argument. I've been trying to put these thoughts into words for a very long time.

    Yes, there are two groups of people who say that autistics should be the ones making the decisions; but whether or not the definition is restricted to those who are officially diagnosed, it still has the same practical effect because the self-diagnosed autistics have been using the psychologists' criteria to decide whether or not they are autistic.

    We haven't been defining ourselves in terms of a cultural and/or ethnic community... that's the central problem I see. We don't have people who, after becoming familiar with our community, identify themselves as autistic because they want to be part of our culture (such as what happens in the gay community, for instance). And I haven't seen many people who compare their particular characteristics to those found in the autistic community, without reference to the psychologists' criteria, and decide that they are ethnically autistic.

    I don't see how we can be a viable minority group as long as the psychologists are the gatekeepers to our community.

    By Blogger abfh, at 9:38 AM  

  • I think we all speak for ourselves because at the moment we try to speak for someone else we will always get it wrong to some degree.

    Very well said, Vicky... thanks.

    By Blogger abfh, at 9:40 AM  

  • So, you're saying a mercury parent who feels autistics should be cured should have the same voice as a parent who accepts their child, at least when some reporter interviews and asks "What does the autistic community think?"

    Or are you saying that an autistic who wants a cure shouldn't have as much of a voice as one who thinks that there should be a cure?

    Or what?

    By Anonymous Anonymous, at 9:56 AM  

  • Uh... "...or shouldn't be a cure..." at end of second paragraph - forgot the not originally.

    By Anonymous Anonymous, at 9:57 AM  

  • Anonymous,

    These people have had their say and will continue to have far more than their share of media attention. That is precisely the problem.

    Only autistics, self-identified or otherwise, can speak for autistics. Our allies can speak for us as parents or concerned and reasonable citizens.

    The problem we need to be addressing is how to get the mainstream media to listen to either autistics or true allies beyond seeing us as a novelty or kook faction.

    I still say, toward that end, the more voices being heard the better.

    Sure, there is going to be disagreement among us, and that's fine. We do not have to say the same things; what matters is that we keep insisting that autistics have the right to be involved in the mainstream discussions of autism. Right now, we are losing that battle.

    I have stated this in such a way as to imply your question is not meant to provoke or misdirect. Benefit of the doubt for now. But really, enough of this already. It's quite tiresome.

    By Blogger Bev, at 10:14 AM  

  • We don't have people who, after becoming familiar with our community, identify themselves as autistic because they want to be part of our culture
    To some degree, I have been looking for a right to my ethnic autism, because I DO feel so connected to my nonverbal 6y/o. I want to help other parents to look for shadow traits in order to accept their ND child, rather than fix him.
    I don't believe that I'd by dxed Aspie, but my brother most certainly could (if there were any reason, other than Aspie Pride).
    BAP fits me. It explains a lot of my "personality". I DO wish to be part of the culture, but how I use that connection is likely to be more local, than global. In other words, I don't wish to speak for anyone more capable of speaking for themselves, but when it comes to my kids, at this point they need me to decide what is "best" (certainly NOT JBJr) and they need my to speak up when Grandpa says push him harder, or the teachers ask why we haven't done intensive ABA.
    I need to have access to the community (as at the Hub) to sort of check myself. How is my way seen by autistic adults? Am I on the right track? I tell you what, I get the feeling my personal style is more acceptable than what professionals would have me reading and doing.
    When dealing with a spectrum, it should be much easier to embrace the varied shades. It doesn't give a minority much power to exclude people because they're not (black) enough
    which also opens the can of worms the anon poster brings up... what about ASD adults who DO want a cure? Are they autistic enough to speak for the community?

    By Blogger Suzanne, at 10:16 AM  

  • I'd put anyone who wants a cure in the same category as gays who hate being gay and want a cure. Although they can (and do) speak for their own sad little corner of the community, it's generally understood that they are not speaking for anyone else.

    By Blogger abfh, at 10:32 AM  

  • As it happens and it just goes to show how I am being misunderstood.

    I have long spoken about Autism being a social construction, and about the right to define that culturally from within (one more reason for this being "our thing")

    My DVD called whichever way you look at it it's still autism deals in part with the issues of different groups defining it in different ways to suit what they want it to be.

    That is where the concept of neurodiverity comes in, because it is not a rigid medical definition for anything that you will find in any dictionary telling you who is in and who is out. Autism in its many differently defined variants alters from the perspective you look at it, and so you cannot say where it's borders are because you have to define what you mean by those borders. Just because for instance I don't have a diagnosis of Tourettes at the moment does not mean I am not tourettes. Theres a few who would say I am. (it helps explain my outbursts more easily than autism)

    The borders of these things are so badly set up that they make little sence

    I never said only diagnosed people can speak for autism, from way back I never said that and have opposed that strand of opinion where I met it. I am for peer validated self diagnosis, a concept I first saw advanced by Martijn Dekker.

    One key important thing is still important to me still is the fact that parents if they are not wearing there own "autistic hat" at the time, do not speak for autism.

    Even an autistic individual if they are speaking from a perspective of autism which is essentially self denying, that is to say a medicalising perspective, are not effectively speaking as the voice of a progressive autism movement.

    Incedentally to put a spanner i the works has anyone ever looked up the History of Mezz Mezzrow, he was white but insisted upon being defined as black when sentenced for drug dealing because he was culturally more attuned to black culture.

    He got his way as well.

    He was not so much a wannabe black, a privileged white boy speaking from a position of privelege for people he patronised, he was prepared to live alongside black musicians in Jazz culture of the day even to the extent of sharing what was probably a harder time than he would have got from the warders as a white by being in prison with them.

    Then there was Archie Belany which is something else.

    I have never been one to say that rights go with any kind of medical diagnosis, it is a case of "if the cap fits wear it" that is to say if an autistic friendly environment, and the kind of work accomodations which tends to suit autistic peopel work for you, then you should have that.

    By Blogger laurentius rex, at 11:26 AM  

  • So, essentially, we're right, they are wrong, if they want a cure.

    How do we know we really are representing our group if we start from the assumption that we must be right?

    It's a scary world indeed when a group can't decide something that is "wrong" in the eyes of others who "know better." Countries get invaded because of that.

    By Anonymous Anonymous, at 11:27 AM  

  • this post makes some really interesting points (especially with the clarifications -and complications- of comments 1, 3 & 10)

    i am going to make a tangent...

    it *is* important to look at other real autistics instead of the textbook, to see what we are (and i have found this a good reminder at other times when addressed by others here, as well as *other* others)... it can be hard when you don't know many real autistics in real life, or if with the ones you know it is hard to see similarities. there are many reasons why a person might know way more autistics online than in real life. that complicates things somewhat, because online everything is being filtered through words, which we all have our different issues with (except in secondlife, where if you are good at scripting you can make your avatar do autistic behaviours, within some limits of technology, of course). i guess what i mean is i wish there were more community offline, yet can't see how that could be easy to happen. especially as some of the people that you would want to have in your community, have great difficulty to even *be* with other people all that much, or *get to places* where they could be with people... many of the autistics "out (t)here" in the real world don't even have their freedom to go hang out with other people, to bring up even another aspect.

    not really meaning to debate here, at all... i guess i am just throwing one more complication into the discussion... maybe just another piece of the unnamed thing?

    By Blogger Natalia, at 12:58 PM  

  • Laurentius wrote: “I have long spoken about Autism being a social construction, and about the right to define that culturally from within (one more reason for this being "our thing")” and
    “I am for peer validated self diagnosis.”

    While I agree with you that autism is a social construct, many autistics seem to think it’s more than that eg that there’s some core underlying “autistic” neurology, or a particular “autistic” way of viewing things, and given this “ideal”, some people are more autistic than others, or worse the “real” autists (as opposed to aspies or people who have come through the mental health system, or even the self-diagnosed or late-in-life diagnosed (because real autists would be unmistakable from birth)).

    I see peer validated diagnosis in online autism communities and I’m not sure I like it any better than professional (ie paid officials like psychologists) diagnoses. Firstly, the criteria in the peer definitions are usually derived from the professional criteria, although they may differ in emphasis. Secondly, the tests are used to rate people’s “autisticity”.

    For example, I often see a test by “rdos” going the rounds of autistic websites. I found many of the questions difficult to answer and so I put “don’t know”. My score did not suggest I was autistic. rdos replied:

    “Getting a borderline score means just that - you have a certain degree of neurodiversity, but not as much as many people with AS.”

    I felt I was being excluded. What really troubles me is that the response from other people, who I thought I agreed with, was not, on the whole, to criticise the test as being misleading or a bad thing, but to say, basically, you’re still welcome, even if you’re not as autistic as the rest of us. This does not reassure me that I belong in the autistic community. Moreover, do I even want to be part of a community that rates people like this?

    By Blogger oscilor, at 1:03 PM  

  • Oscilor I surely know what it is like not to belong to a community, after all that is what I have just gone through with the hub.

    Can't say I get along with some of the attitudes I see on AFF either.

    This is why I think the autism movement has so much to learn from the disability movement, in that these debates have been going on for decades as to who is in and who is out, whether degree of "impairment matters" whether the one eyed man even belongs in the country of the blind.

    Yes I have seen it go on that one category of "impairment" will say that they are more disabled than the other so debate and dissent is necessary else these questions are never resolved

    By Blogger laurentius rex, at 1:49 PM  

  • I don't really see where theres an arguement exactly.
    To put it simple,
    Autistics need to stand in unison and let their voices be heard for any real progress to be made as far as equal rights in the work place and society.
    Parents can partisapate and be by their sides but the Voice needs come from individuals with autism to make an impact in change. Fortunately many disabled goups have paved the way for us and we can learn valuable lessons from the mistakes and sucsesses of other Groups.
    We have a long way to go before we are fully included in society and in the work place.. under employment of autistics is a serious problem as autistics are routinely denied job access. autistics need to keep on fighting in the right directions like the wheel chair users had to do for themselves in the 60's and 70's.

    By Blogger Vicky, at 1:52 PM  

  • "Even an autistic individual if they are speaking from a perspective of autism which is essentially self denying, that is to say a medicalising perspective, are not effectively speaking as the voice of a progressive autism movement."

    You should add

    Even autistics who throw unsupporterd accusations around like so much confetti are not effectively speaking as the voice of a progressive autism movement.

    By Blogger Alyric, at 6:29 PM  

  • Alyric from your posts recently I have no doubt where you stand and it is not with me. Go your way if you will but I think it is in the wrong direction for you seem determined to provoke.

    By Blogger laurentius rex, at 6:33 PM  

  • You got some explaining to do Larry cause I can't see how an autistic can speak as anything other than an autistic,,, much in the same way as one with any other label... unless you say throw out all the labels and then whats the point..?

    By Blogger Vicky, at 6:58 PM  

  • I can understand the political disagreement, but I still don't know what Larry and Joel mean when they imply that parents are trying to be leaders of this movement. I mean, the Autism Hub is only a community of BLOGS, for chrissake, it is not a political party or a formal organization/entity with leaders, executives and such. The hub is just a place that people interested in autism go to get more informed and discuss issues that are important to autistic people and everyone else who loves an autistic person in their lives. The same way I like to read posts debunking the mercury-causes-autism myth, I like to read posts written by autistic people that can help me understand my son better. AND give me hope that one day my own child will be able to express himself as beautifully as you guys do.

    To the general public who comes to the hub, it is not clear that there is a "leader" here. It is just a place where we can find excellent posts about autism. We'll relate more to the blogs that have more in common with our experiences. And that's it.

    By Anonymous Leila, at 6:58 PM  

  • The question isn't about who is a leader. It's about whether non-autistic opinion should carry the same weight as autistic person. Near as I can tell, the hub has little to do with this - what is at issue is parents who insist "I HAVE A RIGHT TO RUN THIS MOVEMENT" (whether they qualify it with "on an equal basis with autistics" or not) versus autistics who say, "Actually, no you don't" (but who probably have no problem with a non-autistic doing work or helping with the movement, it's just setting the direction that is the problem). It's not about apointing a leader of the hub or any other organization.

    As far as I can tell, that's what Larry and Joel are saying.

    By Anonymous Anonymous, at 7:37 PM  

  • ABFH "Autism is a very recent cultural construct"
    Doesn't this go against Neurodiversity's position that Noah was autistic because he perseverated on counting to two?
    Does this mean you now accept the fact that Eli Lilly invented autism 76 years ago?

    By Blogger Fore Sam, at 9:36 PM  

  • ForeSkin: "Doesn't this go against Neurodiversity's position that Noah was autistic because he perseverated on counting to two?"

    Firstly, who the hell said that? Secondly, the social construct may well be recent, but the people on the receiving end of the diagnosis have been around for a long time. Developmental variation may not change much over time but how we contrue it socially certainly does.

    ForeSkin: "Does this mean you now accept the fact that Eli Lilly invented autism 76 years ago?"

    You still perseverating on that old piece of crap?

    No hope for you, Johnny boy... no hope. Beyond redemption, man.

    By Blogger David N. Andrews MEd (Distinction), at 3:03 AM  

  • I'm sure you are very aware that autism is no excuse for being a jackass. Well, neither is autism parenting. I get along with very few other autism parents I know. That is largely because they are jackasses.

    At some point people should just cowboy up and come to grips with reality. But so many won't. Ever.

    By Blogger bigwhitehat, at 12:06 AM  

  • The issue I have, which Larry seems to have also expressed, is with those who wish to be considered part of our community when it comes to having a say, but not when it comes to identifying as one of us.

    I suspect, (although I could be wrong), that some of the ideas expressed lately were inspired by a posting I made to AutAdvo on May 21st, (under the name "TheScaleyDragon" - yes, I'm taking credit for saying it first):

    "Self-identification for autism may raise some issues in people's
    minds, but consider homosexuality: while it's clearly defined, each
    of us has the freedom to self-identify in that regard however we
    choose -- and even to explore different identities, before finding one that fits, (and we rarely make mistakes, unless it's to deny that which we wish not to be true)."

    You see, NOBODY is going around calling themselves gay just because they want to be part of gay culture; they call themselves gay because the label fits. And that label is defined not just by the individual, but by the community of all of the people wearing that label, and also by the larger community of everyone who *uses* the label.

    Homosexuality is a clearly defined, neurologically-based identity. You don't become gay just by calling yourself gay, (and you can't be straight by denying your homosexuality).

    But there is no powerful authority granting permission to wear the label, as is the case with autism. Nobody is saying, "you're not gay until we say you're gay." And that's the difference.

    I'm not in favor of *anybody* calling themselves autistic. In fact, one of the arguments against self-identification for autism is that people will do so when they're not really autistic, because they want pity, or services, or whatever. In fact, practically nobody calls themselves gay for the wrong reasons, and I really don't think it's a danger where autism is concerned either.

    It may take a bit of soul-searching or exploring, but we KNOW who we are.

    BTW, I don't say "self-diagnosed;" I say "self-identified."

    By Blogger Chasmatazz, at 10:38 AM  

  • This comment has been removed by the author.

    By Blogger Chasmatazz, at 10:48 AM  

  • ABFH wrote:
    "I'd put anyone who wants a cure in the same category as gays who hate being gay and want a cure. Although they can (and do) speak for their own sad little corner of the community, it's generally understood that they are not speaking for anyone else."

    I don't know. If I can accept that a person will seek to change their gender because of something other than hate, then maybe, just maybe, there are times when a person might want to become straight, or become gay, or become non-autistic, or become autistic because of something other than hate.

    Let's be clear: people have a right to make whatever choices they want. What we need to fight against is when these choices are made from without. NO CHILD should ever have "cures" imposed upon them because their parents want non-autistic, (or straight) children.

    And if it ever becomes possible, but people are ONLY switching from gay to straight, or from autistic to non-autistic, then ya gotta ask, what's the matter here?

    By Blogger Chasmatazz, at 11:11 AM  

  • Sorry for all the comments, but I thougt of a better way to say what I wrote before:

    If I can accept that a person will sometimes seek to change their biological gender because of something other than hate, then maybe, just maybe, a person can seek to change their neurology because of something other than hate.

    By Blogger Chasmatazz, at 11:18 AM  

  • Thanks for your thoughtful comments, Chasmatazz; you've clarified some points where I did not express myself well.

    Indeed, straight folks don't go around claiming to be gay just because they want to be part of gay culture. But back in the days when homosexuality was considered a disorder, before a gay culture existed, very few people were willing to publicly identify themselves as gay.

    The point I was trying to make about identifying with a culture was that many autistics are in a situation quite similar to the closeted gays about 50 years ago who didn't have the option of identifying themselves as part of the gay culture. Nowadays, when a person says that he is gay, that's understood to be a statement of both his neurological configuration and his cultural identification. But when a person self-identifies as autistic, that's seen as a medical condition.

    I agree that a person shouldn't be considered part of a minority community (whether autistic or anything else) unless the person identifies as a member of that minority. I'm not arguing that our community should include parents who openly acknowledge that they have nothing in common with their autistic children. I do think we need to be very careful not to exclude anyone on the basis of arbitrary and negative psychological criteria, though.

    You're right, of course, that a person might want to have a different neurology while not hating himself. But even in that situation, the word "cure" would be inappropriate.

    By Blogger abfh, at 3:41 PM  

  • ABFH wrote:
    "You're right, of course, that a person might want to have a different neurology while not hating himself. But even in that situation, the word "cure" would be inappropriate"

    I don't know about that, either. It could be said that sex-reassignment surgery is a cure for transgenderism.

    But I'm not one to split hairs or argue semantics when there is general agreement.


    By Blogger Chasmatazz, at 4:18 PM  

  • Thank you for this post. I think that it is extremely well thought out, and some additional good points from the scaley dragon. I've been feeling lately what a very unwelcoming, nasty place this "community" is. Seems to me that one can come into the autistic blogosphere looking for like minds and community and find nothing but people who want to exclude. I couldn't possibly agree more with Big White Hat.

    Like many, I don't exactly think my kid fell far from the tree, so to speak. Regardless of whether he did, the kind of posturing I've been seeing doesn't make me want to be part of the community. I think that's a problem: not only does this community have a hostile world to contend with, certain members are aggressively involved in pitching out people who are/were friendly. That makes me think that the "movement" they are so interested in controling won't be going anywhere.

    I don't think that anybody thinks the cure mongers should be involved in speaking for anybody. That is probably no different from any radical, small splinter that identifies itself with a group to the general horror of the larger whole. But this whole thing has left an ugly taste in my mouth. Hope the purists like it on the hub by themselves.

    By Anonymous Tired, at 3:29 PM  

  • I think everyone should have a voice, whatever they are saying.
    Currently, only certain types of people with a stake in how autistics get to be listened to, and these people (autistics, parents, professionals, etc) are treated as 'the voice of autism'.
    I am not in favor of taking a voice away from anyone. Period. All of us deserve to be heard, from 'I wish I'd never been born, I hate being autistic' types to 'I'm wonderful just as I am' types.
    My big focus is how people's attitudes affect themselves and those they interact with. I think pro-cure autistics are often very unhappy people as a result, and I encourage them to respect themselves and question society's negative attitudes towards them. I don't say 'you're not allowed to speak', but instead 'please stop hurting yourself'. I also think parents of autistics very often are hurting themselves (as well as their child) with their negative attitudes. I encourage them to see the beauty in their child and listen to their child not only to help their child but also them.

    By Blogger Ettina, at 11:22 AM  

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