Saturday, February 13, 2010

Angry Aspies, Please Go Away

Seriously. Michael John Carley says he is "going to have a very hard time calling [him]self autistic," since some others with the same label may wear adult diapers and head-restraining devices. "Hard to swallow," Mr. Carley? What I find difficult to digest is the idea that there are people out there promoting pride and dignity for people diagnosed with Asperger syndrome, while denying other disabled people the same. It makes an easy target of those of us who happen to share (well temporarily, until the new DSM V is completed) your label, but who stand for the basic human rights and dignity of all people. And, oh yeah, it's just plain wrong.
I am autistic, Mr. Carley. I have always been autistic, and I have never been ashamed of having this in common with people whose needs are greater than my own. I worry, though, that people might think I'm like you. I'm not. I know that having a disability doesn't make anyone less of a person.
Did you write this vision statement for GRASP, Mr. Carley?
"At GRASP we envision a world where all individuals on the autism spectrum are respected, valued, and fairly represented; where appropriate supports and services are readily available to those in need; and where people on the spectrum are empowered to participate in policy and personal decisions that affect their lives."
And if so, what did you mean by "respected" and "valued" and "all individuals?" Because I'm not getting it.
Another well known "Aspie," Liane Holliday Willey, weighs in on the topic here. " 'Grouping Aspies with people who have language delays, need more self-care and have lower IQs, how in the world are we going to rise to what we can do?' Willey said." If this "rising" means someone else needs to be pushed down, no thanks, I don't want any of it.
I don't like to call out other autistics by name, and I rarely do that here. I'm making an exception for these two; this is too important to let go without comment. There are too many people out there claiming that "neurodiversity" means selfishly promoting the needs of the "super high-functioning" and "barely autistic" at the expense of people you have now publicly disrespected.
Once the DSM has removed Asperger syndrome from its pages, there will still be plenty of "autism advocates" to tell me I'm not really autistic. Of course their opinions won't make any more or less difference than they did before. I'll still be what I am and they will still be what they are too. Why don't you guys over at GRASP just keep the "Aspie" label for yourselves then? I am already autistic, you see; I really have no use for it.

85 comments:

  1. This really does sort the sheep out from the goats doesn't it.

    Goats who only cares for a lable if it has street cred and is cool enough to write books about and lecture on.

    Welcome to the concept of Stigma folks, you don't like it do you?

    Well neither does any body else, which is why some folks stand for the dignity of Autism, all of it.

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  2. Bev: You and I may disagree on many different things, but on this topic we are in 100% agreement.

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  3. Well written, important words. Bravo, Bev. It needed to be said.

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  4. I feel like these authors must be who a regular troll to hub blogs must be talking about--she complains endlessly about how we think AS is a "cutsie club," but I don't know anyone on the hub like that, just these authors.

    What's disappointing is that Carley's book, Asperger's from the Inside Out, is excellent and really helped me when I was first being diagnosed. I don't like to promote his work when his public comments aren't nice or helpful to the neurodiverse movement at all.

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  6. Yes, yes, thank you!

    And you're right about the hole marketing thing. I hadn't considered this angle before, but it makes a lot of sense. These public figures associated with "Asperger's" have a vested interest in maintaining the label. Unfortunately, ableist sentiments such as these aren't limited to "Asperger's" celebrities.

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  7. ::applauds::

    One of the things that irritated me most about the old scale is how arbitrary it was. Age of speech onset really doesn't say a lot about one's abilities later in life.

    I'm officially diagnosed with Asperger's because I had no speech delay. But I know people who were diagnosed with autistic disorder, speech delay and all, who as adults are much better at communicating over the telephone-- and comprehending muffled speech, for that matter-- than I am. I know people who were diagnosed with autism who can drive a car much more safely than I can.

    And it really irritates me that people don't take me seriously when I do mention the issues I have because I'm 'merely' an Aspie.

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  8. Thank you, bev, for writing this. I feel insulted on behalf of my son on reading that first quotation from mr. Carley.

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  9. Carley needs to read Joel Smith's blog, particularly the post about how adult diapers simplified his life.

    From my off-the-spectrum perspective, this reminds me of infighting between "masculine" and "feminine" gay men, or "dark-skinned" and "light-skinned" African-Americans. In fact, "are Aspies truly autistic?" strikes me as the same kind of question as "is President Obama truly black?"

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  10. Applause.

    While I don't fit enough criteria for an ASD diagnosis, I see this happen in the nonverbal learning disorder community, too--although, oddly enough, I see it more in parents than in NLDers.

    They'll say stuff like: "These kids all have high IQs" (no--our IQs run the gamut, actually, and the NLD profile is found in some people with genetic syndromes that cause intellectual disability, like Williams Syndrome or Fragile X Syndrome). Or how we are all financially independent and able to live on our own, and if we aren't, we really have something else. (No--though that's just from one person who always bases everything she says on her own children and *only* her own children, who are still quite young).

    Or how we're all capable of awesome, amazing things, with the implication that our worth as people is due to us being able to accomplish awesome, amazing things. (Ugh).

    Thanks very much for this, Bev.

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  11. Very well said. These Aspie supremacists need to get their heads out of the sand and stop stomping other autistics into the dirt just to make themselves look better. It didn't take me long after my diagnosis to recognize the fact of disability; but apparently, there are a lot of people still in deep denial about it.

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  12. This is so good!

    Like The author said,it's stigma. I don't know how people think they can avoid that.

    What I often read is that autistic's can be sexy, autistic's can be smart,autistic's can grow out of autistic behaviors, (or have those behaviors "treated"), autistics can have relationships, autistics can have good jobs....when they do they rise to royal title of "aspie".

    Of course autistics can do all those things but who does saying that imply can NOT do those things. Even more importantly, what purpose does the implication that they can't serve.

    Anytime one group receives the title of better, it's at the expense of another group being considered worse and both groups lose as a result.

    Until or unless any of the labels are in keeping with the attitudes that will encourage and create better opportunities for everyone concerned, they are not just worthless, they are hurtful.

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  13. Wonderful, Bev! This is a conversation that has to be had, and the "sorting out" is something that just has to be done. We can let them go their own way, while we stay and fight for the rights of everyone.

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  14. Yes, thank you for this.
    From a 57 y.o. undiagnosed autistic woman. We all deserve being treated with dignity. The stupid infighting does not help anyone or anything.

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  15. Bev
    While I respect your opinion. I think you and others are wrong. Carley is an idiot and his objection to the proposed change is disgusting.

    The seperate category for Aspergers in the DSM-IV has been a force for good. It allowed the identification and acceptance of those who are clearly different to those who are passing(can pass for NT mostly). And allowing them to (carley/grasp exception) to work with and be integral part of the advocacy movement with those who fitted under other diagnostic categories.
    I dont think the autistic advocacy would be where it is today without that "breakout" in the DSM-IV.

    It allowed an emphasis on part of the autistic spectrum that would have been otherwise ignored. And mark my words this change is done precisely for that reason. To remove the voice of those who do fit under a diagnostic category like Aspergers. It will at first seem negligible but then more and more Asperger adults/children will be cut off from services and be not able to part of the debate. The very academics whose voices were being silenced by those with "Aspergers" will be able to take back control in a firm and commanding way not seen in years.

    The AsMan

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  16. The problem with Aspies is most of them ARE morons socially so they are bound to say the wrong thing.

    I can say that because I have Aspergers as a diagnosis and would be more than happy to be thought of as high functioning autistic and on a spectrum of autism at the more able end.

    Why?

    It sounds better to normal people.

    It is more tangeable.

    I speak a different language to neurologically typical people and I am in the lucky position of being able to understand something of both worlds.

    I can say - see that bloke there in the head restraint, think of you (NT person) as 0% that.

    Think of me as 10% that.

    Not in an I am better than way, it is a meaningful explanation. I mean what DOES Aspergers MEAN?

    Think of it like this, high functioning autistics are like stars at the edge of a black hole.

    We have a myriad of complaints related to the black hole (where full blown dysfunctional autism maybe at the centre).

    While my complaint - complaint X, may not be the same as your complaint - complaint Y - in relation to the black hole our condition makes sense and it treatable.

    SLUG x

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  17. Thank you for reporting on this, Bev. I find Carley's attitude repulsive. ALL of us deserve dignity and respect by virtue of the fact that we are human, and his remarks do not reflect this shared humanity.

    Littlewolf

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  18. In response to this beautifully written post and some others, I wrote this one of my own. I also find Michael John Carley's attitude to be bigoted, divisive, and hypocritical to boot, considering that he claims to be promoting acceptance.

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  19. Thank you. I don't know you Bev, but I like you!

    I read those two articles previously that you mentioned here and I was appalled, but nothing beats hearing it from someone with AS!

    I am the mother of a 9 year old third grader who is not an Aspie- she has HFA (PDD-NOS) and she has been kicking a** for the last five years. The changes have been dramatic and she is truly amazing...I wouldn't trade her for the world. One sad thing is that she is now extremely aware of the differences between herself and some of her peers who are not as "indistinguishable" as she is- and I noticed that she appeared to be suddenly reluctant to have people know that she has autism. She doesn't want others to associate her with peers who are not indistinguishable.

    I found this to be devastating. I've raised her to think of having autism the same way others regard their peanut allergies, asthma, etc- not something to be ashamed of OR brag about- basically, "It is what it is."

    So we had a big talk (on a third grade level of course) about how everyone is different- even typical friends- but on the inside there are more similarities than differences, and we do not judge others on the spectrum who don't look the same as us, or who don't do the same things as us b/c on the inside, all kids are the same and want basically the same things.

    She "gets" it and seems to have relaxed a lot. I feel better b/c I am not a fan of this elitism/class warfare that seems to be popping up with this DSM-related chaos...I hear ignorant statements all of the time from uninformed people who are not on the spectrum and I am weary from correcting people (i.e. "They aren't testing her for autism- they're testing her for Asperger's"), but it's especially offensive to hear it coming from Aspies!

    Thank you again Bev for being a voice of reason.

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  20. just found your blog from jen shrek's. i have a son who was diagnosed with AS and ADHD but who is much more HF autistic than AS. since he was diagnosed his dad and i have realised we too are on the spectrum. i hate this divisive thing - the whole thing about a spectrum is it varies. my son has friends who are non verbal who he relates far more to than to non-autistic folks.

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  21. This was magnificent! I had been tooling my own little treatise on this topic but your words were so sharp and wonderful that I have decided to put down my pen and just applaud.

    Arrogance and denial are a wicked meld. It's that same type of 'us and them' mentality that the entire push for neuro diversity is attempting to eradicate.

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  22. Hooray! Great post. You took the words right out of my mouth. I have been shocked (shocked!) by the nasty stuff I've been reading from some in the Asperger's community. True colors are showing, I guess.

    I'll tell you, nobody has been able to agree if my son has Asperger's or if he has "high functioning autism." Since there is apparently no way to differentiate, how can anyone say autism and Asperger's are different? Some people say, "Oh if there's speech delay, that's autism, not Asperger's." But my son was speaking at 10 months and by 20 months had the vocabulary of the average 4-year-old. Doesn't stop people from suggesting he has so-called "high functioning autism" and not Asperger's. So, come one. If nobody can agree on which is which, they just need to be the same thing.

    LBC

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  23. The diagnosis of Autism Spectrum Disorder is, by nomenclature alone, inclusive of Asperger's Syndrome. As an Aspie, I have no problem being in the same diagnostic boat with people who share the diagnosis. Besides, segregation went by the wayside a long time ago. Man-up (or girl-up) about it.

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  24. I absolutely agree with what you have written - the disrespect for other autistics is unacceptable. So is one autism better than another now? I didn't realize we had all become so precious about a label.

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  25. I am reposting this from Liane Holliday Willey at her request to remove an error in the comment:

    It is with sadness I write this. Your comment beneath my quote makes it sound as if the word 'rise' implies 'better than'. Keep in mind when a person is asked for a sound bite they don't have hours, much less minutes to come up with the precise language they are trying to convey. By rise, I mean 'reach your full potential', not 'go up or down in quality of life'. Every human being has the right to ‘reach’ his or her potential. If I had said 'reach' her potential in the quote, would that have led you to see what I mean is simple: if my child had not been put in an all-inclusive classroom, she would not have reached her potential. Because the only option beyond all inclusive was autism intervention classroom, I choose the former. If I had chosen the autism intervention classroom, would that have given the all-inclusive advocates the assumption I think my kid is too good for their classroom? This is a ridiculous way to ridicule the choices I and many other people on the spectrum make for ourselves. You are taking a very complex issue and turning it into a simple case of discrimination, which it is not, at least not to me.

    How sad this kind of debate continues. A label is not the problem. The problem is services and how they can be best matched to each individual.

    To those of you reading this epistle of mine- I humbly ask you to believe me when I say, I do not in any way shape or form ever mean to imply I am better than any other living human being on this planet, and the name Aspie does not define my humanity, only the characteristics of my differences.

    I may be reached for continued dialogue which I am honored to have with anyone, at aspie@yahoo.com

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  26. Bravo, Bev! I have been struggling with this issue for some time, and your post gave me the impetus I needed to move past my Asperger's label.

    I'm autistic, and the name of my blog now refers to autism, not Asperger's.

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  27. As I've said on the cover of my book, "Autism Is My Universe", I do not see an issue at all here. I'm autistic. Always have been. Yes, I was diagnosed as Asperger, but, so what. It didn't suddenly change my accomplishments as a multi-platinum record producer that's performed at the Grammys, on Oprah, at the MTV Music Video Awards and making the cover of an international music periodical for my self-taught ability to play synthesizers and piano.

    I could care less if Asperger is absorbed back under the title of autistic. It's not going to, in some magical way, lessen who I am now. The stigma of it all depends on those of us who are autistic. I care more about human rights than a label. It's sad that some have hijacked the word Asperger as if it's some elite label reserved for high-functioning autistic folks like me. I'm embarrassed by those folks. Being black, I hate this kind of condescending attitude. A blind person with special musical abilities may have a better opportunity to make a good living for themselves, but, that doesn't make him/her any better than a blind person that doesn't possess those talents or skills.

    Let's not make this a bigger deal than it is. Hans Asperger originally concluded in the '40's that 400 children he observed were like "little professors". His terminology? Autistic. He didn't separate the highest IQ's from the lowest. He called them ALL autistic. Many years later is when some other 'so called' smart medical professionals started monkeying around with trying to encourage this separation of IQ. Leave it alone! I, for one, am happy to see things go back to the basics. If there is a stigma to this, it will be completely individually self imposed. I wouldn't do that to myself and I hope other autistic people will choose to speak for themselves, too. Anyone can become successful with the right environment and encouragement. Let's concentrate on making sure as many people as possible get THAT opportunity, ya know?

    Peace & Music,

    Michael Buckholtz/CEO
    Aid for Autistic Children Foundation, Inc.
    Georgia

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  28. I concur, most emphatically and enthusiastically!

    I used to think I was "somewhat strange" and "socially awkward" with "weird obsessions." I'd rather be just more or less autistic, ya know? Snork!

    Sorry about that. People do vary, one from another, and the variance comes in degrees.

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  29. If only there were a word that told people that you can be very intelligent AND very autistic and dispel every other myth and misconception. Thank you Thankyou (one of us, one of us!)
    xx

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  30. lisadom,

    How about a word to explain that even if one scores poorly on standard intelligence tests, that person is equal to the rest of us and worthy of being included in all of life's endeavors? That might be worth something to me. Of course there is no word, there is only the experience, and many people lack this due to exclusion and segregation of those deemed less capable.

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  31. Liane Holliday Willey,

    You are right that there are very complex ideas to be considered here. And I also agree that this single sound bite should not be presumed to represent all or most of your thoughts on the issues at hand. I, too, believe that everyone should be provided the supports needed to reach her full potential.

    On the other hand, there are several problems. One is whether anyone deserves to be placed in something called an “autism intervention classroom.” Another is the idea that somehow sharing a diagnostic label with persons who are in such a classroom would damage the educational opportunities of those now called “Aspies,” Asperger autistics or people with AS. It seems very unlikely that these students would suddenly be re-routed into special education services that are not needed.

    The reason I included your statement here had nothing to do with the word “rise” and everything to do with the idea that certain people might be held back from reaching their potential by sharing a diagnosis with others who have performed poorly on standardized tests. What about the potential of these others? How are they being held back? To me, these are the bigger concerns. There is an opportunity to bring these into view at times like these, when those with more status and privilege are threatened by the possibility of their own status being lowered. Why not abolish the hierarchy instead?

    I am sorry that you were hurt by my comment on your statement, which was not in the same league of offensiveness as the statements by Michael John Carley. However, I did not ridicule you or your choices. I quoted you and added a thought of my own. Your rewriting of the sound bite did not address my true concerns, some of which I have noted in this comment.

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  32. Just so you know, I go by ASpieboy instead of... say... Autieboy purely for phonetic reasons. (And I get to do that cool thing with the first two letters.)

    @ Liane Holliday Willey:

    I think that if re-labeling Asperger's as autism is really going to make a difference in the way we aspies are treated, we shouldn't simply 'save ourselves'. If you believe that being called autistic will stop you from reaching your full potential, then there is stigma associated with the diagnosis. We all know that we are not the only ones who perceive this stigma. Distinguishing between Asperger's and Autism only serves to increase this stigma. If you don't want to be called autistic, there must be something wrong with being autistic. Not flawless logic, but that is the argument you are inadvertently making.

    I, for one, don't want to slide by on the fact that I can pass for normal when others cannot. I want to help gain respect for all autistics, not distance myself from them.

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  33. Hi again,

    I only deleted my first comment b/c it was more emotional and all over the place, heh.

    Anyway. I'd like to point out to other older ASD adults here that being an ASD adult WITH an ASD child is a bit of a double whammy, especially if you were just trying to sort it all out in the mid to late 90s when a lot of this stuff was still unknown to the general public.

    It may sound inconsistent, but I applaud Bev for this article and think it is necessary. And, on the other hand, I don't want to see Liane unfairly lumped in with that yahoo in the other article.

    Here's the deal, when it came time for my son to be 'labeled' after all of his testing 15 yrs ago or so, the counselor said he was really quite borderline between LD and AS. So what did I do? I asked her to put him in the "LD" category. For a number of reasons;
    -the times
    -I wanted him to grow up and decide on his OWN label (he didn't really embrace ASD until he got into college, where it was more progressive and accepting than his high school)
    -being an ASD single parent and having the fear he'd be taken away from me.
    - I was just beginning to talk about with those who knew me about my own ASD, sort of paving the way for him, in being comfortable with it and ourselves.

    So -- on a whole other level, I can understand Liane having perhaps this protective tendency - as we do as parents - and it's often instinctual. I.e; was I being autism politically incorrect by letting my son go with an LD instead of ASD label? Probably so. But for THAT TIME, in THIS place, and MY situation, that was what was decided, and I make no apologies for it.

    Now -- I'll be deleting this entry by the end of the day b/c I didn't get prior approval from my son to mention this, and I feel strongly that his story is HIS story to tell, not mine; but since it's so intricately wrapped up with my own, I felt it a good example for this particualr situation.

    Bev, you're making a great contribution here on your blog.

    Liane is making a great contribution also in her own way, especially in terms of ASD women who've been invisible most of their lives and inadvertantly walked into situations of violence and abuse.

    In essence, just want to sum up and say, ALL stories need to be told.

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  34. This sounds more like a media spin on difference in general. As an Aspie, changing the external designation to Autism isn't a big deal, in the least. If anything it is an interesting development which may be looked at as brining a closer realization that "normality" is nothing but a delusional construct. That underneath the fears of others is a truth that everyone, NT's included, fall on the spectrum. We are all people and all human, something much more important.

    The media wants to divide those of us who are proud to be different and to do so they use those who might not have embrassed their unique attributes. Our battle is one of human rights. We must stand together.

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  36. Awesome as usual Bev! I couldn't agree with you more. Thanks for getting this out there.

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  37. I keep writing a rambling post that basically is a statement of truth. Lots of it. I am Autistic. I fit with the Asperger's criteria but I was diagnosed with Autism instead. I have a friend who is an Aspie, and he has longed for a change like this because he feels saying he has Aspergers sets too high of an expectation for him. I function more freely than he does.

    I communicate well with "normal people" because I had to learn or die. Yet, I am still labelled Autistic. I am proud to be an Autie and not an Aspie...

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  38. The title of this post bothers me "Angry Aspies, Please Go Away." It reminds me of when I was involved in other movements in the past. Inclusiveness is always the most important thing that everyone talks about most indignantly, but don't anyone dare disagree, or we won't include you! (Despite the fact that you are one of us.)

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  39. That is a good point, Alison. And I was plenty angry when I wrote it, so I suppose it's doubly ironic.

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  40. Hi Bev,

    A thought-provoking post as usual but bigoted comments aside, I can't really figure out whether merging the two labels will have a positive or negative effect.

    Ultimately, "whatever will be, will be" and the DSM will change with or without our input. We'll all still be the same people.

    The (secret?) primary purpose of the DSM is to pigeonhole people into specific categories for assistance/funding purposes. Such funding would obviously be much more effective if it were allocated on an individual case-by-case basis but even then, there's potential for subjective evaluations and rorting.

    Some aspies and HFA's have much better coping mechanisms than others. As such, they have a lesser need for funding. My biggest concern about the changes is that "levelling the field" might result in a redirection of funds from those who really need them to those who are more able to cope.

    An individualised approach would be so much better.

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  41. My two cents on the change:
    The U.S. pharmaceutical industry is one of the most profitable industries in the history of the world, averaging a return of 17 percent on revenue over the last quarter century. Big Pharma is a business, governed by the motive of selling products and making money.

    Financial Ties between DSM-IV Panel Members and the Pharmaceutical Industry
    http://www.tufts.edu/~skrimsky/PDF/DSM%20COI.PDF

    I have no issue with regards to the Asperger/Autism change but I do worry about the motives and implications of medicating for profit.

    I worry that the Autism community is missing the implications of the changes. We understand the spectrum but the 'professionals' are woefully misinformed by the medical community. What types of medication errors are going to occur with the change?

    An enlightening view of the reasoning behind some of the changes. http://abcnews.go.com/WNT/video/diagnosing-mental-disorders-9802221

    If the medical professionals are struggling with providing a correct diagnosis, why is that not being addressed and resolved?

    (I cut and pasted my comments from this blog posting on Facebook.)

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  43. "...the idea that somehow sharing a diagnostic label with persons who are in such a classroom would damage the educational opportunities of those now called “Aspies,” Asperger autistics or people with AS. It seems very unlikely that these students would suddenly be re-routed into special education services that are not needed."

    --Bev, excellent framing of what I think is really a big part of the heart of this topic. Thanks

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  44. My brother is in his twenties.. very LFA but he does not have a head restraint and he does not wear a diaper. The guy who said that is an ignorant bigot and would help us more if he just stfu. For years I have been trying to get help for my brother and just recently I had a speech therapist respond to my enquiries of him being taught some literacy skills (which he was never taught by his schools- they never even tried) that "autistics do not typially respond to those teaching approches only sign language etc". she was implying "there's no point" even though she had only ever worked with 1 autistic child in her life and knew nothing. the UN charter says ALL children have a right to education yet some disabled kids have NOT recieved that right because people have presumed they have no potential when they do. Those schools need to be more than creshes. If aspies and auties are seperated; auties will again fall through the cracks and be looked on as hopeless cases. Don't let that happen and please do not be ashamed that you share the same label with those who are completely imprisoned by it. My brother cannot talk but he does have a mind and he has a brain.. just because people can't get to know him does not mean he should be denied help. "Head brace and diapers"? Sounds like he wants the institution days back.

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  45. Great. Now all of current "genius" "Aspies" will now call themselelfs "auistic" while the average autistic Joes, like me, and those much more disabled, will still be here.

    The "genuises" will become the new face of "autism" and we will be forgotten about.

    Goodbye.

    Stephanie - I am hoping it's the other way around... they will go and those that need the services, the understanding, that goes with the diagnosis will remain.

    I have one that "passes for normal" and still requires OT and accommodations for his LD of poor short term memory. I suspect he won't need them forever, but at 10 they are allowing him to succeed, not fail.

    I have one that will always require services. Although, he too is doing amazing... and I'm proud of him and whatever his accomplishments may or will be.

    I don't care who's LFA or HFA that gets services. Since my LFA and HFA both do.

    But I want it to stop being a "cutsie club" (yes, that's me) and I want it to go back to being a diagnosis for those that need help to get the most out of this life.

    I've been griping about those "elitists" for years... so now I can say "I told you so".

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  46. FW2,

    Yeah, I guess there's nothing elitist about demeaning people by calling them a "cutsie club." Hmmm... Anyway, if you bothered to read this post before commenting on it, you know that I don't agree with MJC at all, nor do more than a couple of readers who have commented, so what's your point?

    As for Stephanie Lynn Keil, she's the one who has stated she has "high intelligence;" she's clearly closer to the genius designation than I am. That has nothing to do with whether or not she needs services. She has says that she does and I believe her. There's no reason not to; genius doesn't mean anything like "requiring no assistance."

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  48. Maybe one of my "savant" abilities is driving :D

    Actually, when you think about it, driving is in line with other savant abilities: art, music, visual/spatial abilities, etc.

    I'm very good at all rigt-brained activities and I'm pretty sure driving is a righ-brained skill.

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  49. It does not really matter how smart someone is. That kind of thinking kind of makes the whole "acceptance" message go to moot. It's expanding the circle of normality to accomodate those right outside the outer edges while those farther away are still excluded. My younger brother who is 13 appears totally non-autistic and is great with executive function, but needs assistance with the learning process. I appear more "severe" because I have a speech impediment, am socially inept, have some difficulties with executive function, and don't make eye contact, and yet my IQ has been clocked in to be 163 and I have read 13 Shakespeare plays and 2 by Marlowe. So "genius" is not really synonymous with not needing assistance. Not only that, but intellect was once a standard for judging if a person was fit to reproduce and live, as I posted about here.

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  50. There is a reason why so many of us learned to hide our differences when we were young. There was no help available, and our pattern of strengths and weaknesses is complicated. As long as the diagnostic tools are crude, and myths abound, any kind of generalization (of labeling) is likely to be a step backward. It is already hard for parents of low-functioning autistics to acknowledge that Aspergers can make life difficult for someone, when their own children need so much more help. Many children (especially girls) miss being diagnosed because of generalizations about the "little professor" prototype, and those missed are often being "medicated" for the problems arising from social thinking deficits. If these differences in wiring were purely visual, no one would argue with measuring each for a fitting treatment. Instead, many of those who have social thinking deficits will be expected to cope by taking a "happy pill" instead of being fitted with a correct lens through which to see the neurotypical world (and they will continue to stumble around like a half-blind person because they can't process accurately the lay of the land).

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  51. Bev,

    this isn't the first time that a post by farmwife2 reminded me of this cartoon:

    http://3.bp.blogspot.com/_1vPB2M2IMiI/SyzQUYS7LqI/AAAAAAAACg4/VtfmgY7X8Lc/s1600-h/disclaim.jpg

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  52. If we wanted to be a "cutsie club" we'd dress up in cutsie puzzle piece outfits and make autistic children our cutsie "team" mascots. But we don't do that. Autism $peaks does that.

    Soccer moms don't object to cutsie clubs. They object to not being invited!

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  53. On this issue I agree with you and can I just say on a side note that, the article written done by AP is the worst article I've ever seen a news wire put up. I mean "some autistic people?" I know you mention some people but... come on.

    As for the whole autism diagnosis changes there's one thing I might keep on using Aspergers for and that's a "weird and wonderful" thing called "posterity" which is rather harmless. On the serious side I mean I "fight" for the rights and debate the issues that relate to all disabled people. By the way that includes autistic people on all parts of the spectrum not just one shade of it. So it makes no difference what I'm called or what people on the spectrum are called. The issues will remain the same across the spectrum.

    And as for implications let's see what exactly the drugs companies come up with if they really want to to be attached with their own stigma of being total control freaks.

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  54. Thank you, Bev.

    It needed saying and you said it so well.

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  55. Thanks. I wrote my own post on the matter recently myself.

    People who object on the opposite grounds are just as mistaken, and if they think there were never early-speaking high-IQ college graduates considered autistic before they need to take another look at Kanner's original patients, some of whom would have been called AS until now and most of whom would be called high functioning by one measure or another, including the girl who couldn't speak.

    People just plain need to get over the idea that being in the same label as people really different than them is (a) horrible for some reason, and (b) something that never existed until the DSM. (You think there aren't people diagnosed with AS who have low IQs, academic problems, self-injury, incontinence, etc.? You think there arent people labeled autistic who are the opposite? Then you don't know enough people with each label.)

    As to Carley, as I've said a couple times now, he knows perfectly well I use diapers and a helmet but thinks I am good enough to use my writing both with and without my permission. So he has no problem using my writing to further his goals but has a problem sharing a diagnostic label with me. The people saying these things aren't ignorant of our existence, they're just elitist. And I have never yet seen a situation where elitism is okay. (LFAer-than-thou is just as elitist as HFAer-than-thou.)

    There have always been huge differences between people sharing the same labels and huge similarities between people with different ones. That's why they're connecting them together now. The different ones just don't make sense, especially if you understand that all the traits people freak out about being so "different", are the most superficial traits of autism. Anyone who looks deeper into either the science or the lived experience knows that certain very internal aspects of thinking and perception are the central experiences of being autistic. People whining about diapers and academic records and helmets are determinedly looking at things that can be very different on the outside about two people who are exceptionally similar on the inside.

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  56. Thank you for writing this post. I feel the same way.

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  57. Thanks Bev, that is what I meant. Not the standard intelligence test IQ, but the unmeasured abilities of everyone on the Autistic Spectrum. I don't agree with standard intelligence tests which are biased against people who might understand language in different ways, or find it difficult to comply with a structured test, or find the person examining them aversive.
    It's all about respect. And if you have that from the beginning then it is a lot less likely that some will be "written off" while others struggle through an unfair system.

    And you have taken a huge step towards engendering that respect on behalf of the entire autie community.

    xx

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  58. I said the same thing a year and a half ago on the Hub list serve and I don't remember anyone, including you Bev, siding with me. In fact, I was completely alone in saying it. Its part of the reason my invitation to leave was quickly accepted by the administrator.

    I said the same thing on ASAN's listserv and I was booted. Somehow, you're getting credit and I was booted. Hmmm.... perhaps I said it a bit more harshly and to the point. My style is just as legit an autistic form of communication but it seems the same social rules apply to autistics as the general populace. We still have a long way to go.

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  59. I don't give a damn what people call me -- as long as it stops at senseless name-calling. If it goes beyond that, I intend to use every fibre of my being to fight it.

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  60. Kent,
    I almost never comment on listservs. In fact, I usually don't read them; I just don't have enough time. I am doing well when I can keep up with this blog.

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  61. I've been thinking a lot lately about the term "high functioning" lately, and I'm curious about whether or not it's a very...fraught term? I write about disability and am non-neurotypical (though not diagnosed on the Autism Spectrum). And I've started to feel that the term is a bit...demeaning. It seems to dichotomize people with disabilities in ways that I think are too...simplistic. I am very high functioning in some ways and not at all high functioning in others, and I start to wonder if the phrase is just one more means of dividing and regulating people with disabilities (i.e., "I've been classed as high functioning, and these are the things I'm supposed to be able to do neatly and without making anyone feel uncomfortable."). Feel free to ignore me if this is too much of a derail--I'm just curious whether or not there's actually something to my squick with the phrase or if it's just me. Or what purpose it really serves (other than to further marginalize people who are not coded as "high functioning").

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  62. Kristin,

    See this for my views on it.

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  63. And I have been saying the same thing in various forms since the very early 2000s. When a pattern exists, many people will comment on it. It's not for any one person to claim credit.

    As to what Kent alludes to: I tried to say I didn't have the time or energy to evaluate the very specific situation Kent brought up on the listserv, and then reply to it, and that a lack of replies was probably due to that and other autistic communication problems. (I especially thought it would be understandable to not want to jump in denouncing something until I knew what I was denouncing.) Lots of people verified that this was precisely why they hadn't replied. Kent began to list off people by name and demand to know why we hadn't replied, and refused to take our reasons seriously. I explained (despite being conscious that Kent was becoming outright hostile to anyone who dared have the spoons to reply to something else but be unable to rapidly evaluate the very specific situation Kent brought up. Kent became more and more insistent until the moderator jumped in and told him to lay off, at which point Kent began to accuse me of putting pressure on the moderator, and refused to believe me even after I complied with a request to reassure the list that I had not gone running to the moderator. Then he began to refer to the explanations of why people might not be able to reply (especially under pressure) and the requests to stop pressuring us to respond, as abuse, and told me in private that I was a fraud.

    So the problem was never that Kent had a problem with elitism, or that he denounced it in a style people didn't like. It was that he demanded a rapid response even after receiving explanations as to why this might not be possible, and the pressure he put on people (even after explanations of why pressure makes it harder for many autistic people to communicate)caused a chain reaction that made replying even harder. Then if he got responses from anyone who had said they couldn't communicate under pressure, he would refer to it as if such people had attacked him in some way.

    In other words it was one of those mailing list clusterfucks that happen sometimes. It was not (as Kent would know if he had seen how often many of us had done so) that people on the list were ever shy of denouncing elitism. Many on the list had been denouncing elitism for years, and sometimes taking huge amounts of crap for doing so (or, yes, even doing so bluntly -- although by the time Kent brought up that aspect he had forbidden me to respond saying I had had that problem, so i didn't, even though as many on the list knew I used to be infamous for a communication style many regarded as "angry"). It was that Kent brought up a specific situation and before any of us had time to evaluate it and respond he was already pressuring us for responses, even after repeated explanations of why it was hard for us and why pressure made it harder.

    Cont'd

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  64. ThIs is the first time I have ever taken matter from a mailing list off of it in this manner. But since I have been called an abuser and a fraud (by Kent) in direct connection with this, and since he accused me of bringing in the moderator as if the moderator couldn't see for himself what was going on, I figure it is better to explain just this once what happened.

    The sad thing is that I remember musing, once the smoke from the clusterfuck had died down, that if Kent had just backed off after the requests for less pressure, he might have found that people started agreeing with him, once we had time to evaluate the situation he had brought up, and come up with words to respond to it. I'll never know at this point because reading the incident he asked to evaluate has become irrevocably tied with intense pressure and the stress of finding myself defamed. But I have never hesitated to denounce elitism when I have found it, nor have others on that list, so if we had been permitted to find it in our own time we would quite possibly havedenpunced it. It's hard to know by now though because I know I am not the only one who has associated that incident with extreme stress and pressure (at a time when I had too much work on my hands to blog more than occasionally, let alone evaluate others' blogs, which I wasn't even reading at the time he began demanding that people read and evaluate a blog entry really rapidly).

    So the problem wasn't that he was harsh or blunt, nor that I and the list members who had the same problem as me had no experience of being considered too harsh or blunt even by other autistics (would that Kent could have seen the messes another listmember and I used to get in on the Autreat planning list over... harsh denouncememts of elitism that pissed off more people than anything). Nor that he denounced elitism (the public record of what many listmembers have said on that subject speaks for itsel, go take a look through Joel's and my blogs for some of the easiest to findf). It was a matter of stress and pressure that blew up much bigger than it would ever have if we'd all been taken seriously when we said "We can't do this right now and pressure makes it worse." I otherwise apologize for bring list matters up in public but given the awful things that have been said, people should know there were two sides to this. I do expect since I am yet again the one speaking up (despite being again far from the only person this happens to) I might again het more of the blame than exists, so be careful in interpreting this as between just two people, because it wasn't. It also wasn't a situation where Kemt denounced elitism in general, which is easy to agree with, but an individual instance of it, which takes time to figure out.

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  65. Amanda: I remember that thread. I stopped being able to say anything at all in it because of being told (in some way, I don't remember the exact words) that I was one of those "fancy language using" autistic people who presumably had all kinds of ease communicating.

    When really I absolutely do not have ease like that.

    Words have always been like throwing lots of patterns at some other pattern I think I see and hoping something sticks and makes sense. I know sometimes it comes out sounding "good" but that is by no means reliable. People see my posts online but they don't see the pages and pages and pages of text I had to type first, and then extract bits from and rearrange, in order to get something coherently communicative out of it. And of course everything I typed, erased, typed, erased, is eternally lost, though I can assure you there are innumerable characters that fall into this set!

    And it just tires me out to be constantly responding to people who clearly discount whatever I say because they're apparently seeing something in my phrasing(?) or vocabulary that doesn't mean what they think it does.

    ...and bringing this back somewhat on the topic of the original post, one reason I agree with a lot of what Bev is saying is precisely BECAUSE of this struggle to communicate I've always had, coupled with the utter terrifying-ness of knowing that using words at all sets me up to have to explain myself further even when I can't.

    Anyway, one consequence of this is that in the future I imagine autistics might be somewhat "groupable" NOT according to superficial "functioning level" (and sure as hell not according to how much presumed value a person supposedly has) but according to things like specific cognitive strengths and weaknesses pertaining to language and other things.

    Frankly I suspect that there's a whole lot of us out there who have something like "receptive language difficulty coupled with good apparent expressive language some of the time, and a tendency to shut down and become unable to use language at all when pressured for a response". But of course that kind of thing doesn't get studied or even acknowledged when you've got this idea in place that "real" disability cannot coexist with "real" ability, or that apparent abilities (or disabilities, for that matter) have to be utterly consistent all the time in all contexts in order to truly exist.

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  66. AnneC: Yeah, as you know if that were a grouping I would be in the same group. And I also have that ton of extra text. And in other circumstances the inability to use language at all, or only use it in abbreviated "telegraphic" form, or ways that mean nothing at all related to my thoughts, or use many of the wrong words, or (gasp) in ways that sound harsher than intended. These things are not mutually exclusive. And the more pressure (including time pressure) the less likely it is to even approach the right form, except sometimes when I am following a common script (the stuff about what pressure does to my expressive language being an exceedingly common script). And sometimes I am just reduced (by pressure) to screaming. So rather than sit there screaming and banging my head I have had to try to learn that past a certain point I shouldn't try to produce language that will never come out anyway.

    I also suspect there is some connection between shifts in language ability and shifts in other cognitive abilities. There are autistic people whose abilities seem to be locked into a very rigid and unchanging pattern. And I find that if they already have some reason they don't want to listen to me, it is absolutely impossible to explain the CONSTANT shifts that are going on to exchange different abilities, and they may assume that I have every ability I have ever had, except all at once instead of with exchanges going on every second or minute or year or whatever. I even had someone once try to explain yo me that my abilities don't really go away when they go away. I think that stare of shifting is really counterintuitive to anyone who is not experiencing it, and hard to fathom. Especially the fact that I have no control over the shifts and that the abilities my brain gives me have nothing to do with my choices or desires, and that sometimes those shifts may become virtually permanent. And that shifts existing don't mean I can call up any random convenient ability. And that even with the shifts there are patterns (like sucky receptive language even at my best). It's even hard to explain the difference between having trouble figuring out which word was said, and having all words sound so meaningless that without (or often despite) effort, language itself might as well never have existed or be a concept I don't have (I get a sense that mishearing words is commoner than whatever my brain does to language, where I can often hear and sometimes repeat the sounds just fine, bit the meaning might as well be in another solar system).

    So especially because I get the sense ours isn't the most common autistic configuration, it can be difficult to explain even to the most willing autistic who doesn't share this pattern. And to those who don't... (shudder) I remember trying so hard to communicate it to an unwilling person once that I spent hours of time on the computer and my pain levels were sky high, only to be told that if I really wanted to I would be able to compress a long piece of writing into something easier to understand. Even though I sacrificed several days worth of energy trying and just couldn't, the person as good as told me I was lazy and doing it on purpose to irritate her. (Which reminds me, trying to explain to anyone that only being able to write things long is just as much a language problem as only being able to write things short, which I should know since if somethings long it's because I can only write it long and exactly same if I can only write it short.) Or even being outright mocked by an autistic person for being "long and repetitive". (Even though to me each "repetition" had a slightly different meaning.)

    Cont'd

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  67. All of which is to say I think our community has a long time to go before every configuration of autistic person is accepted. Including (maybe especially) configurations that have no particular official label to set them apart. Like I know many autistics of all official diagnoses who seem like you and like me, but there is no term for us, and we span every possible official diagnosis and functioning level. While those who share an official label with any of us may be almost entirely foreign. Although I am also hesitant to form groupings without much care, because for instance if there was a group for people who write long things and those who couldn't we would both be in both. One thing is for sure though, the community in general needs to get past an unfortunate tendency to only accept people's explanations of who we are if they happen to like us. I see way too much "I don't like this person so I just won't accept their explanations of their abilities", which ends up pointlessly dividing us.

    And people with less common variants of autism stand to fare the worst in such situations because in order for people to treat us as we are they have to believe we are as we are. And believing us requires understanding that the forms of autism most familiar and intuitive to a person are not the only ones out there. I see many people of our subtype (whatever it may be) facing skepticism from autistic people whose experiences are more likely to be represented in most autistic people's ideas of what an autistic person is like. And that's a shame, and a more subtle symptom of the hierarchies Bev is talking about.

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  68. I think we've brushed against another important issue, of whether the educational and other support systems are ready to deal with a diagnosis system that is on the surface a one size fits all category and on the inside part that few people see is nuanced beyond what most people could really understand. As Gavin Bollard pointed out, the DSM is supposed to link you up with support services that are appropriate to your needs. I recall seeing on the Autism Speaks website once a recommendation that HFA/AS be treated with ABA... So hypothetically I might walk into a IDEA planning meeting with full intent on asking for full blast services in one area and perhaps a placement in a gifted and talented program somewhere else and the school counselor might just look at me and say "are you sure you don't want ABA?". Granted, the school is looking to pay for as little as possible so they'd be happy not to force it on me. However, if inside all they are thinking is "why isn't this idiot accepting the ABA, its the only scientifically validated approach for autism... if they don't know what's good for them why spend the time trying to work with them... I'm certain their kid can't really function in that gifted and talented program because everybody knows autism=retardation so we'll just claim the program is full."

    This really is an argument for fixing the school system and other life support systems and for exorcising from society the stigmas which haunt many of us, not for avoiding scientifically appropriate labels. However I think it still points out a problem that we may encounter with the diagnoses being combined together. We don't know yet if one part of the community will end up dominating the voice and image of the diagnosis. If any one group does, the others will suffer. Instead of taking sides in a fight over who will be forgotten, we should be positioning ourselves to present a nuanced and balanced view to the rest of the world. Towards that effort, thanks Bev for the great post.

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  69. Bev: Agreed -- fully, completely, totally.

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  70. I think it is kind of sad that well-known people with Asperger's are basically publically saying that they wouldn't want to be thought of as people with autism. It seems mean to me! I have Aspergers and lots of times I have found it simpler to say, "I have autism" because more people know what autism is and because autism sounds less like "ass-burger " Maybe the opposite is true... using the word "autism" to cover everyone on the spectrum could mean LESS stigma for people who have always been called autistic!

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  71. I just found your blog. I'm the mother to a recently diagnosed autistic 3.5 year old who is the light of my life. Reading your posts, old and new gives me such peace, knowing that there are so many adults out there fighting for understanding and acceptance of who my child will be for the rest of her life.
    When we tell people she's autistic, I get reactions from "oh really? I thought you didn't vaccinate?" and "oh god. I'm so sorry." to "oh. that's interesting, how can I support you and Ruby?" (the last one is clearly my favorite) My child was not given a death sentence, she's just different. Vaccines don't cause autism (although I do think that in some kids they trigger the regression that wakes up parents). My child is amazing, perfect... she's just different. and it's my job to figure out how to help her achieve her dreams.
    She's 'high functioning' and people say things like 'oh good, maybe she'll get to live a normal life' or maybe it will turn out to just be aspergers. WTF? what is normal? normal is what makes her happy, fulfilled, complete.
    Anyway... my comment really doesn't relate to this specific post, and seems all over the board (maybe I had too much coffee). I just wanted to thank you for your words, your honesty, for being who you are.
    Now I'm gonna go dig for worms with my awesome kid.
    Korin
    www.mamazen.typepad.com

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  72. I know I'm coming late to this dance but here I am anyway. I am an Aspie, one dismayed over the change, not angry. I don't hold with Michael John Carley's reasons but I have reason of my own.
    I was first diagnosed at age 50, self-diagnosed, really. I had never heard of Asperger's Syndrome before, but it made sense out of my life almost instantly and in a way that had never happpened before. I certainly knew about autism, having an autistic nephew, but without the diagnosis I would never have realized how much we two have in common. But without the distinction, I doubt I would have recognized myself. I have no doubt that if the proposed change had been in place it would have been hedged about with may have's, sometimes manifests as'es, does not always require for diagnosis'es, etc., and I would have wound up buried under a thicket of exceptions. Instead, there I was, in crisp black and white.
    How much we have in common, yes, but we are different in many ways. I cannot see our differences as being between "low-functioning" and "high-functioning." The term "spectrum" itself implies that some people with autism are more autistic than others, more "authentically" autistic. I do not see us as being at different points on a spectrum so much as being in subsets of the same class. Let's say that we are both rectangles. There is no rectangle spectrum. There is no rectangle that is more rectangular than any other rectangle. There are squares and rhombuses and parallelograms and irregularly-sided rectangles, all of them different but all falling within the same class of polygon (Of course, my kids would argue that I am a square.). And there are differences in the characteristics that predominate among "Kanner's autistics" and "Asperger's autistics" and all the other definitions that fall on the so-called spectrum.
    I understand the goal of trying to make services more available to all children on the "spectrum", but I think we are throwing out the baby of useful distinctions with that bathwater.

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  73. I have to agree with Old Rockin' Dave on this. Will getting rid of Asperger's mean that some will got without diagnosis and not get the services they need? And to add my own two cents -- should those with autism cheer for the removal of Asperger's from the simply because some Aspies have an elitist attitude? What bothers me the most about the post and the various comments is that on one hand the autistics are accusing the Aspies of being elitist while on the other reflecting a prejudicial view towards Aspies themselves. Inclusion means both sides must learn to get along. We should not hate all Aspies simply because a handful of outspoken ones choose to behave like uneducated jerks. Let's be better than those jerks.

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  74. I'm having quite a bit of a hard time. I was recently Dx'd as having asperger's and was told it was a milder form of autism. I have no problem with the idea, or label, of having a milder form of autism. It makes a lot of sense. I don't understand the idea of asperger's people thinking they're better than other autistics, or whatever their problem with that is. That just is ridiculous to me. I've had problems that are pretty severe, but with no language delays. I did the feces smearing when I was 9, I was not fully toilet trained until I was in 5th grade (both daytime and night time urinary incontinence, and, honestly, I still sometimes have problems with that). I have terrible trouble with balance, coordination, and am very sensitive to certain types of sensory input. Bright or flashing lights cause me to be very disoriented. Many types of sounds are actually painful, that other people don't seem to notice. Light touching is intolerable (like gently stroking my arm), while firm touching doesn't bother me. I can not organize anything, my mother still has to come help me with my apartment (I'm 32!), because when I try I get confused and overwhelmed and end up in tears, curled up in a ball on the floor, because I SHOULD be able to do it by myself at my age. The same goes to figuring out bills and any type of complex paperwork. I have serious trouble tolerating change of any kind (as a child and teen, change equaled a massive tantrum for me, and change is still seriously difficult, though I handle it better). I've no idea how other people figure out what's going on with another person outside of the content of their speech, unless the other person is laughing, crying, yawning, or yelling (those ones I pretty much get). Example: without those things, I can't tell if a person is angry, pensive, tired, or sad. This causes serious misunderstandings, and drives people nuts. I seem to consistently make people angry by saying the absolute worst thing at the worst time, and rarely understand why what I've said is wrong-- I've had to memorize a lot of social rules, but don't understand them. I could go on, but I already have long enough. My problem is that, while I fit the criteria for asperger's, I fear I won't fit the revised criteria (it looks like I will just barely fall outside the criteria). I've had severe trouble gaining and keeping a job, and have now begun working with vocational rehab to move towards real independence. Since I fit the asperger's criteria, I can get help now. When they change it, if I don't fit the DSM-5 criteria, I'll loose all the help and will be back to life without any available services. No chance at independence-- earning a living on my own without needing my parent's financial and practical support. I will be back to having no chance to develop pride in myself, since employment is something I'll only be able to achieve with help. Loosing this chance would be devastating to me. Completely.

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  75. I'm having quite a bit of a hard time. I was recently Dx'd as having asperger's and was told it was a milder form of autism. I have no problem with the idea, or label, of having a milder form of autism. I've had serious problems, but no language delays. I did the feces smearing when I was 9, I wasn't fully toilet trained until I was in 5th grade (both daytime and night time urinary incontinence). I have trouble with balance, coordination, and am sensitive to certain types of sensory input. Bright or flashing lights cause me to be very disoriented. Many types of sounds are actually painful, that other people don't seem to notice. Light touching is intolerable, while firm touching doesn't bother me. I can't organize anything; my mother still has to come help me with my apartment (I'm 32!), because when I try I get confused and overwhelmed and end up curled up in a ball on the floor sobbing, because I SHOULD be able to do it by myself at my age. The same goes to figuring out bills and complex paperwork. I have trouble tolerating change of any kind (as a child change equaled a massive tantrum, and it is still difficult, though I handle it better). I've no idea how other people figure out what's going on with another outside of the content of their speech, unless the other person is smiling, laughing, crying, yawning, or yelling (those ones I get). Example: without those, I can't tell if a person is angry, pensive, tired, or sad. This causes misunderstandings. I often make people angry by saying the worst thing at the worst time, and rarely understand why what I've said is wrong. I've had to memorize a lot of social rules I don't understand. My problem is that, while I fit the criteria for asperger's, I fear I won't fit the revised criteria (it looks like I'll just barely fall outside it). I've had severe trouble gaining and keeping a job, and have now begun working with vocational rehab to move towards real independence. Since I fit the asperger's criteria, I can get help now. When they change it, if I don't fit the DSM-5 criteria, I'll loose all the help and will be back to life without any available services. No chance at independence-- earning a living on my own without needing my parent's financial and practical support. I will be back to having no chance to develop pride in myself, since employment is something I'll only be able to achieve with help. Loosing this chance would be devastating to me. Completely.

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  76. CrouchingOwl said: "We don't know yet if one part of the community will end up dominating the voice and image of the diagnosis. If any one group does, the others will suffer. Instead of taking sides in a fight over who will be forgotten, we should be positioning ourselves to present a nuanced and balanced view to the rest of the world."

    I'm pretty sure that this is what we will be up against when PDD-NOS and AS and autism are all under one name. I say so because of my experiences in the world of diabetes.

    There are several kinds of diabetes but two major ones that people know about: type 1, which typical starts in childhood, and type 2, which typically starts in adulthood. Most diabetics (I'd have to look up exact numbers, but something like 80%-90% off the top of my head) are type 2 diabetics.

    Both types experience difficulties from being under the same name. Type 1 get upset about being lumped in with the stigma of being fat and causing your own disease by bad eating and laziness. The whole thing is more complex than that, but since most type 2 are obese and since type 2 can sometimes be controlled through diet and exercise (type 1 requires insulin and type 1 diabetics tend to be very lean) many news stories unintentionally (or intentionally -- I'm not sure) portray "diabetes" (meaning type 2) as a disease of excess, a disease of overeating, a disease of laziness, etc.

    But, generally speaking, the type 1 community is more strongly represented by its members. Most of the big diabetes support groups online are heavily dominated by type 1 diabetics and a type 2 diabetic can feel edged out and even unwelcome. Additionally, parents of type 1 are the strongest lobbiers. They can get money more easily because people are more willing to give money to children's causes and to causes that don't have the stigma of being caused by the sufferer.

    Meanwhile, type 1 organizations count all diabetics and capitalize on the "diabetes epidemic" news stories to get money for their smaller pocket of the diabetic community. Often, even type 2 diabetics are convinced to contribute to type 1 diabetic causes, not fully realizing that their donations won't help themselves personally, sometimes not even realizing that the organization to which they're donating is only for the other disease that they don't have.

    I've often said that life would be easier (at least for me) if type 1 diabetes and type 2 diabetes (which are honestly two different diseases) had two different names.

    (continued)

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  77. CrouchingOwl said: "We don't know yet if one part of the community will end up dominating the voice and image of the diagnosis. If any one group does, the others will suffer. Instead of taking sides in a fight over who will be forgotten, we should be positioning ourselves to present a nuanced and balanced view to the rest of the world."

    I'm pretty sure that this is what we will be up against when PDD-NOS and AS and autism are all under one name. I say so because of my experiences in the world of diabetes.

    There are several kinds of diabetes but two major ones that people know about: type 1, which typical starts in childhood, and type 2, which typically starts in adulthood. Most diabetics (I'd have to look up exact numbers, but something like 80%-90% off the top of my head) are type 2 diabetics.

    Both types experience difficulties from being under the same name. Type 1 get upset about being lumped in with the stigma of being fat and causing your own disease by bad eating and laziness. The whole thing is more complex than that, but since most type 2 are obese and since type 2 can sometimes be controlled through diet and exercise (type 1 requires insulin and type 1 diabetics tend to be very lean) many news stories unintentionally (or intentionally -- I'm not sure) portray "diabetes" (meaning type 2) as a disease of excess, a disease of overeating, a disease of laziness, etc.

    But, generally speaking, the type 1 community is more strongly represented by its members. Most of the big diabetes support groups online are heavily dominated by type 1 diabetics and a type 2 diabetic can feel edged out and even unwelcome. Additionally, parents of type 1 are the strongest lobbiers. They can get money more easily because people are more willing to give money to children's causes and to causes that don't have the stigma of being caused by the sufferer.

    Meanwhile, type 1 organizations count all diabetics and capitalize on the "diabetes epidemic" news stories to get money for their smaller pocket of the diabetic community. Often, even type 2 diabetics are convinced to contribute to type 1 diabetic causes, not fully realizing that their donations won't help themselves personally, sometimes not even realizing that the organization to which they're donating is only for the other disease that they don't have.

    I've often said that life would be easier (at least for me) if type 1 diabetes and type 2 diabetes (which are honestly two different diseases) had two different names.

    (continued)

    ReplyDelete
  78. (continued from part one)

    Now switch over to autism where it really is one condition, not several. But after watching the infighting in the diabetes community, I think it might be human nature for a diverse group under one name to experience division and some parts of the group exploiting other parts of the group for gain, etc.

    All of which is the long way around of say that yes, I think that one part of the community (I cannot predict which part) will end up having a dominating voice and coloring people's perceptions of what autism "really" is and confusing people about what autism "really" is.

    And I agree that we should cut it off before it starts and work toward autistic unity and no shade of the spectrum dominating the discourse. Or the funding. Or the public image.

    I don't want to see anyone losing funding because some other group in the spectrum got funding. I think we need it at all levels. I know that I could sure as hell use some funding to get proper counseling to help me understand why I always got fired two weeks after getting hired and how I can prevent that happening now that I'm working so hard on getting a degree that I would really like to be able to use in the workplace.

    I just need the proper nudge but I can't afford the local asperger's counselor and my medicaid won't pay for her so I'm going to go into my job hunt with no clue as to what it is that I have always done wrong on the job, all my life, and no idea how to try to fix it so I can (hopefully) keep this one.

    I think that's just as valid a need for funding as someone who needs a day worker to come to their home every day to make sure they eat or someone who needs an early intervention therapist to come work with their children. I don't want to get "thrown away" because I'm an adult with "high functioning ability." And I don't want any one else to get thrown away! We're all valuable, we're all human beings, and we all need some kind of help from society.

    I like what Joel says on his blog about how *every body* needs some societal assistance. Some people would starve to death if someone didn't grow food and someone else didn't ship it to the grocery store. Why is a grocery store more important than speech therapy, a day worker, or career therapy for an adult? Just because more people need a grocery store than speech therapy doesn't make one person better or more deserving of society's assitance than another!

    So I agree with CrouchingOwl: the most important thing is to band together for ALL of our rights and needs. The wedge is already there; we can't let something like a name change drive that wedge home and divide our community completely.

    ReplyDelete
  79. MJC's book seems quite good, although there is a lot of controversy about his opinions on things & relationship with Autism Speaks etc.
    It also seems MJC does not struggle with comorbid conditions such as depression which can make comparisons with Einstein etc even more depressing.

    ReplyDelete

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