Sunday, September 26, 2010

Aspie Bigotry at Autism Speaks Blog

Earlier this month, an opinion post appeared on the "Autism Speaks Official Blog" that talked about the differences between Asperger's Syndrome and Autism. The opinion post was written by one Hannah Fjeldsted, a college senior who has Asperger Syndrome. The entire post was about how the Ms. Fjeldsted feels that grouping people with Asperger's (aka "aspies") in people with autism is somehow an insult and degrading to them.

I guess the irony of being an advocate for the acceptance of people with Asperger's while at the same time bashing their less fortunate peers is somehow lost on her.

With this rant, Ms. Fjeldsted joins the growing ranks of aspie bigots who think that they are better than the rest of the people on the spectrum and should not be lumped in with "them". Like other bigots before her, Ms. Fjeldsted is laboring under the false impression that Asperger's Syndrome is currently a separate condition from the other types of autism and that the upcoming DSM V is going to force people with Asperger's to be lumped in with the rest of the spectrum.

Nothing could be further from the truth.

Asperger's is already, by definition, a form of autism. It is included in the current DSM IV under the pervasive developmental disorder category along with autism, pdd-nos, Rett Syndrome, and childhood disintegrative disorder. It is this group of conditions that make up what is typically called the "autism spectrum".

So sorry Ms. Fjeldsted, if you have a diagnosis of Asperger's you are already one of "them".

Factual problems aside, the rant is quite entertaining in its own way, with some breathtaking statement of intolerance such as -
As someone with Asperger’s, I am strongly opposed to this proposal and I firmly believe that autism and Asperger’s should continue to be classified separately. This proposal will do more harm than good because it will further perpetuate stereotypes and misunderstandings about Asperger’s, it will serve as an insult and a mockery to those who are severely affected by Asperger’s, it will cause further confusion and ambiguity in diagnostics, and it will attack the identity in which many Aspies, like me, take pride.
and
First of all, many Aspies already suffer enough from the negative stigma and stereotypes society holds against them. To call Asperger’s “high-functioning autism” or “a form of autism” will only contribute to this stigma. The label of Asperger’s at least gives observers the impression of intelligence and ability. But, when most people think of “autism,” they think of someone who should be institutionalized and cannot live independently. Therefore, if people with Asperger’s are merged under the autistic group, brilliantly gifted and capable individuals could be unfairly stereotyped as incapable and unprofitable.
You really have to read the whole piece to get the complete picture, these snippets cannot do it justice. The overall tone is elitist and the whole thing is one big insult and stereotype aimed squarely at people who suffer most from autism.

I am not the only one who found this post insulting and, in what is probably a record for the Autism Speaks blog, there are 74 comments on the post, the overwhelming majority of them being highly critical.

I am not sure what I find to be more troubling here - the fact that there are so many aspie bigots like Ms. Fjeldsted out there or that Autism Speaks gave one of them a platform for their bigotry.

To its discredit, Autism Speaks did respond to the angry comments with a comment of their own -
It is noted that these words are the opinion of the author, not necessarily representative of Autism Speaks. We aim to present a variety of opinions from members of our community. The author’s viewpoint is simply that – her opinions.
So their response was a very lame "we didn't say she did". While I can understand that people have a variety of opinions, Autism Speaks should not be in the business of giving a platform to an opinion that is insulting and demeaning to the group that they are supposed to be serving. Autism Speaks needs to grow a pair and take a stand against stupidity like this. Bigotry against people who suffer from autism is not a valid viewpoint.

I wish I could say that opinions like Ms. Fjeldsted's are rare, but they seem to be becoming increasingly common. I think the neurodiversity movement is in large part to blame for this with their absurd notion of autism being just a difference. It is one thing to accept people as people, limitations at all, but completely another to romanticize a medical condition like autism. Autism is a very serious development disorder that causes major problems for those affected. It is a medical condition that requires treatment and a cure, not some civil rights movement.

So Hannah Fjeldsted, if you want to take pride in being an "aspie" and want think of it as you "identity" and don't want to be lumped in with those others, you know, the ones that belong in institutions, here is my suggestion.

Get the hell off the spectrum and go find some other group of disabled people to insult.  People with autism and their caretakers have enough to worry about without having to deal with your bigotry.

37 comments:

  1. This is pathological 'high functioning' autism in the wild.

    They live in the same dustbin as the 'low functioning' autistics.

    ReplyDelete
  2. yes, ironic, people like mike carley and John Robison want to be in the same category as autistics to help sell their books and get publicity for their cause and to perpetuate the myth that autism is related to "geek success" yet at the same time don't want to be put in the category of lower functioning autistics.

    This sort of guest post is probably par for the course for autism speaks which has become a collosal joke from its funding of laurent mottron, to put on an autism in the workplace dog and pony show without employing any autistics in their organization to the inconguity of having John Robison on their scientific advisory boards with all of those M.D.'s and Ph.D's.

    All I can say is boycott autism speaks and donate money to them until they can get their act together.

    ReplyDelete
  3. Autism speaks have actually done there work rather well in portraying autism as such a terrible state of stigmatised being that no-one would want to be lumped into that category. Now there is an irony, they have created a situation of division, such that younger people diagnosed with a "more socially acceptable (and there is irony in that phrase diagnosis)wish to dissociate from the wider implications of that in terms of where it fits.

    Anyway I don't take well to being lectured by opinionated high school seniors who have a lot to live and experience yet. I'll listen to there opinion and try and change it, while there is still time.

    ReplyDelete
  4. It is necessary for everyone to have a voice and an opinion. Otherwise we take away "Free Speech".

    But, I'm not surprised... but I am curious, once the V comes into publication, how many of these - I don't need services - "Aspies" will either cling to their "label" even though it no longer exists or, finally give up their "cutsie club" and join the "NT" one. I don't think this group helps those "Aspies" that need services... the new dx, making it clear they have autism... should clear up the misconception that true Asperger's is a disability that requires services.

    ReplyDelete
  5. "true Asperger's is a disability that requires services".

    Indeed (from dsm iv:

    "The essential features of Asperger’s Disorder are severe and sustained impairment in social interaction... ...and the development of restricted, repetitive patterns of behavior, interests, and activities... The disturbance must cause clinically significant impairment in social, occupational, or other important areas of functioning...

    The impairment in reciprocal social interaction is gross and sustained. There may be marked impairment in the use of multiple nonverbal behaviors.... There may be failure to develop peer relationships appropriate to developmental level ... There may be a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people.

    Lack of social or emotional reciprocity may be present.. ... the social deficit in Asperger’s Disorder is severe..."

    ReplyDelete
  6. Hi MJ -

    There is absolutely nothing to be gained, and lots to be lost with a continued association of "aspies" and people deeply afflicted like my son.

    I think that you and I are on the same page regarding the inappropriateness of having Ari Ne'eman a board giving input on research regarding autism. The ever expanding spectrum has put him there. If you want to see research dollars slashed, a sure way to get there is for the public to think we are spending tens of millions of dollars to help someone like Ari.

    The spectrum is a useful textbook tool, but without utility in the real world, when, for example, we would classify Ari Ne'eman and Hanah Polling as having the same condition. On the opposite side of the coin, other than following the semantics of a DSM definition that we all agree fails to capture large components of autism, what is to be gained by the spectrum definition?

    Hannah Fjeldsted is right, just not for the reason she thinks she is.

    Let them go and rejoice in their absence.

    - pD

    ReplyDelete
  7. Then of course passionless, you will have to discount a number of Kanner's originally patients, especially Donald, who, still alive has recieved some publicity of late, as never having had autism at all, because it doesn't fit with what you require for complex cultural and sociological reasons you have never considered, to be autism.

    One could observe two people with cerebral palsy and observe every degree of difference that you might in Autism, would you make the same arguments there.

    (I expect you would if you were the parent of one child observing the success of a CP PhD)

    Even if you rigidly put clinical categories on anything, experience should teach you that an identical and well established clinical entity, such as Polio, or Multiple Sclerosis can produce vastly different results.

    I am really fed up with people who only argue by what they know close to them, who are prepared to and are afraid to engage what they don't like, and that goes for Hannah Fjelsted and Passionless Drone, yes you are alike the pair of you.

    It's a fuzzy world, get used to it, because it is the world that you have to live with because your thinking about it won't make any division as certain as you would like.

    ReplyDelete
  8. pD, is an 'aspie' someone with Asperger's Syndrome?

    If so, you are talking nonsense (from a clinical and scientific point of view).

    ReplyDelete
  9. pD,

    I am not sure how I feel about dividing the spectrum into multiple groups.

    On the one hand, it does make a great deal of sense to make a distinction between those who ability to function is impaired and those who have traits that they have either managed to compensate for or overcome. On the other, is it really fair to say that the second group should have any diagnosis at all?

    I tend to be of the opinion that if your issues don't get in the way of living your life or you have found ways to compensate for them that you should not call yourself disabled and you certainly should not put yourself forward as speaking for and/or about what autism is about.

    So is it better to tell the functional "aspies" to grow up and just accept the fact that there is nothing really wrong with them - or perhaps I should say get them to accept the fact that everybody has strengths, weaknesses, and issues that they have to deal with - or to give them their own label?

    Right now I am leaning towards the former and keeping one "autism" diagnosis. I think that we might be saying the same thing, just in different ways.

    But regardless of where we draw the functioning line and split the spectrum, there are always going to be those who can function better than others and I find it problematic that one of the higher functioning ones would be so degrading to the less fortunate.

    So while I may possibly agree that Fjelsted was right in dividing the spectrum I still think the way that she made her points was very wrong.

    ReplyDelete
  10. Socrates,

    I think "aspie" is a separate term from aspergers and most people who call themselves aspies are as far from a "typical" aspergers case as aspergers is from autism.

    It is all a matter of degree, and that is really the point.

    ReplyDelete
  11. Hi The Author -

    Then of course passionless, you will have to discount a number of Kanner's originally patients, especially Donald, who, still alive has recieved some publicity of late, as never having had autism at all, because it doesn't fit with what you require for complex cultural and sociological reasons you have never considered, to be autism.

    I could care less about Kanner. OK, lets discount them. So what?
    Furthermore, you don't have a clue what I have considered or not.

    One could observe two people with cerebral palsy and observe every degree of difference that you might in Autism, would you make the same arguments there.

    Well, I guess it would depend on if someone who was very mildly affected with CP was taking pride in that fact, and proclaiming they did not want to be associated with someone very seriously affected. And more, if the person who was very mildly affected was actively opposed to finding a cure for CP, then, yes, I would take that position.

    At least, however, both CP and autism are medical conditions, so at that point, your analogy manages to water.

    It's a fuzzy world, get used to it, because it is the world that you have to live with because your thinking about it won't make any division as certain as you would like.

    One person, such as Ms. Fjelsted, has mastery over the English language and all that this entails, understands the concept of the Internet, has formed the opinion about organization taking a stand that she disagrees with, and a galaxy of other abstract concepts that most people (including you?) take for granted.

    Another person, like my son, does not appear to understand that the voice on the phone is a person, the concept of more versus less, or, indeed, how to answer a question like 'show me where it hurts'.

    These are fundamental and simple to understand, qualitative differences between these two people in terms of the ability to function independently. No amount of wordsmithing will change this. If you don't think these divisions are crystal clear, I think the only thing you can see is the fuzzy.

    - pD

    ReplyDelete
  12. In other words Passionless, you have practically admitted to deciding that you are the ultimate arbiter of what autism is from your own observations. But hang on a minute, where did you get those parameters you are applying from in the first place?

    Kanner and Asperger both were working on observation, interesting thing is that they observed somewhat more than someone proceeding from a primed and fairly heavily biased observation as what ought to fit what they want it to be.

    The true scientist does not reject something that appears later but does not fit the original thery, they either modify the thery (if the black "swan event" can be accommodated ) or reject the thery if it cannot, what they do not do is decide that a black swan cannot be a swan because it is not white.

    I take nothing for granted about autism, or for that matter the other constructs with the current DSM, that is the outcome of researching the phenomenon from a proper grounded perspective.

    And oh yes there are people with varying degrees of Cerebral Palsy who do take pride in that, because that is the way they are which they have grown up with and it is better to take pride than see it as a source of perpetual misery and envy, it is such people who have taught me to take a pride in myself for all my "imperfections"

    ReplyDelete
  13. I'm surprised to see Naseem Taleb crop-up here given his take on autism - and given his patent colour-blindness.

    pD, your ignorance concerning the pathology of Asperger's (or in Larry's eyes - the Aerogel of the confabulation of the societally ignorant psychiatrists) is quite profound.

    The 'show me where it hurts' issue frequently crops-up in the Asperger's part of the Spectrum, although I haven't the patience skilfully weave the multitudinous threads of this argument - Larry can do it since he's the professional here.

    MJ., In that case the "aspies" need to fuck right off. I mean really, they need to fuck-off and leave the grown-ups to get on with the important business at hand.

    Their propaganda has done as much harm as Autism Speak's - two bunches of tossers talking crap.

    ReplyDelete
  14. Author,

    I don't think that pD is attempting to set up himself up as the ultimate authority about autism is or isn't. He is simply talking about distinctions between the different severities of autism.

    I happen to agree with what he is saying.

    You seem to be confusing the ideas of scientific inquiry with the specifics of a clinical definition. You can't say that someone isn't being open minded about a clinical definition - a definition is what it is.

    Now, you might be trying to say that the clinical definition of autism is only an approximation of what autism "really" is, but that is really a just an excuse to do exactly what you are saying pD is doing - defining what autism is or isn't. And saying that you take nothing for granted is the same as saying that you want to be able to say anything and everythinag is autism. At that point, you might want to start using the proper terminology and replace the word "autism" with "human".

    Autism is a useful label to describe a set of behaviors , it is not some abstract thing to be "discovered" via the scientific process. Some people have more of these behaviors than others and some of these differences can be quantified. As pD said, there is a large quantifiable difference between a child that has problem with very basic communication and someone like Fjelsted who takes to the internet to pontificate about why she is fundamentally better than the ones who can't talk.

    As for taking pride in having a medical condition like CP, I just don't get that. I can understand taking pride in who you are, what you do, or what you have managed to accomplish but to take pride in the fact that you have a medical condition? That makes no sense.

    People are people, not medical conditions.

    ReplyDelete
  15. Hi the author -

    In other words Passionless, you have practically admitted to deciding that you are the ultimate arbiter of what autism is from your own observations.

    No. I am merely stating that there are profound differences in functioning that make the application of the same label preposterous. I really could care less about the label autism per se, but the reality is that the public at large has time to understand simple stuff; autism is about as nuanced as they can get. Given that, it makes no sense to group people with such wildly different capacities together.

    Maybe children like my son need a different label. In that case, people who are proud to have Aspbergers can do all the crooning they want about how great it is, it won't effect how dollars and attitudes are shifted towards someone who faces the challenges my son faces.

    I could care less about Kanner, Asperger, labels, which DSM we are on, which DSM we will have later, and the rest of that.

    As for the rest of your post, I honestly can't tell if you were addressing a point I tried to make, or were just typing stuff.

    - pD

    ReplyDelete
  16. No MJ you would not get the bit about CP and pride, that is because never mind the autism, that's irrelevant, it is different worlds, the world of disability and impairment as normality and what you are used to.

    I am blessed by living with alternate humanity, never mind all the misconceptions about autism you really need to start listening to disabled people and disabled culture, it's an eye opener, and in fact it could be your own salvation, because consider it, you are only temporarily able bodied and of so called sound mind. It is the riddle of the sphinx.

    If for example pain is so fearful for you, you are not going to cope very well if it hits you.

    I was considered disabled before I was diagnosed with an ASD.

    Autism is only one small part of the experience of "disability."

    I don't think a lot of posters really ever consider where they actually stand, and look with such security on what is mere illusion.

    Passionless I don't think you really know much at all beyond your projection about levels of funtioning and the complexity of it all.

    I have been in that different world for longer than most parents have considered themselves to be.

    It's not an alternative or choice it's what I have lived, mine and others impairments and the relationship of that to one an other and survival.

    I don't think you would really want my life, but then none of have any choice and that is the point, nothing to argue about, get on with it.

    ReplyDelete
  17. Hi Socrates -

    pD, your ignorance concerning the pathology of Asperger's (or in Larry's eyes - the Aerogel of the confabulation of the societally ignorant psychiatrists) is quite profound.

    Spare me. What I am not ignorant of is whatever the pathology of Asperger's, the challenges faced by someone who can come up with phrases like the 'confabulation of the societally ignorant psychiatrists' are orders of magnitude less profound than the challenges of someone whose ear drum bursts because they do not understand the concept of communicating their state in ways other than crying or biting.

    Any nuanced and poignant response you write will simply prove my point. From a hierarchy of needs perspective, one can only worry about a 'of the societally ignorant psychiatrists' if you understand those concepts. Those are the problems I wish my son could be able to understand.

    The 'show me where it hurts' issue frequently crops-up in the Asperger's part of the Spectrum, although I haven't the patience skilfully weave the multitudinous threads of this argument - Larry can do it since he's the professional here.

    Jesus Christ, you guys are so interested in the fuzzy and the confabulations it's no wonder you can't comprehend the problems of someone who truly cannot communicate. I've got news for you, Socrates. You can communicate. It's true. If you had an ear ache, you could find a way to let someone know before your ear drum burst. You'd probaby could write a multitudinous, and bitingly sarcastic blog posting about it. You likely could point to a picture of what hurt if someone put a picture of a body in front of you, or point to your ear if someone asked you where it hurt, or maybe you could nod your head if someone said, 'does your ear hurt?'.

    Asperger's is hard. OK. But the challenges faced as undescribably less severe than a child who truly does not understand abstract concepts like the ability to nod their head yes or no to a question. If you don't believe this is the case, you might reconsider the wisdom of throwing around accusations of profound ignorance.

    - pD

    ReplyDelete
  18. pD.,

    "are orders of magnitude less profound".

    *sigh* I have been examined/humiliated/ignored by the finest of Cambridge's autism clinical fuck-wits.

    In their infinite and ineffable wisdom they have placed me in the same bucket/dustbin/dumpster as people like your son.

    This is not an "orders of magnitude" difference. It is just next door on a linear scale.

    ReplyDelete
  19. pD.,

    "are orders of magnitude less profound".

    *sigh* I have been examined/humiliated/ignored by the finest of Cambridge's autism clinical fuck-wits.

    In their infinite and ineffable wisdom they have placed me in the same bucket/dustbin/dumpster as people like your son.

    This is not an "orders of magnitude" difference. It is just next door on a linear scale.

    ReplyDelete
  20. Hi Socrates -

    I have been examined/humiliated/ignored by the finest of Cambridge's autism clinical fuck-wits.

    I can remember reading one of your earliest blog postings, it involved the valkyrie and a highly attractive doctor, if I remember correctly. But this doesn't speak towards much other than the failings of people. And again, you understand the concepts of humliation, and being ignored.

    It took me a long, long time to grasp the idea that my son didn't understand this level of abstract conceptualization. Once I came to this realization, however, my perceptions changed quite a bit.

    I'm still not sure if you understand the degree to which this colors every aspect of living; the inability to understand abstract concepts.

    To my mind, it is the most difficult thing for my son, for without that ability, entire layers of thought are unavailable. You understand the concept of the past, or the future, the idea that in three days you have an appointment to be ignored by a psychiatrist, you understand that a bus costs less money than a taxi, that money can be exchanged for items and a million other concepts that extend from the concrete.

    In their infinite and ineffable wisdom they have placed me in the same bucket/dustbin/dumpster as people like your son.

    Again, this speaks to my mind towards the problems with the DSM, and I have no love for psychiatrists. I'm not sure on your point here, honestly. Do you think this is a good thing, a bad thing, or just that the folks at Cambridge aren't smart?


    This is not an "orders of magnitude" difference. It is just next door on a linear scale.

    If you think that the inability to discern that the number fouris 'more' than the number one is next door towards the ability to be concerned about 'confabulation of the societally ignorant psychiatrists', I guess we just aren't going to see eye to eye on this.

    - pD

    ReplyDelete
  21. Heaven's To Betsy! pD.,

    I'm a bona-fide freak-of-nature. A slow-boy with am 100,000 word vocabulary. I should be in a home. Deal with it.

    ReplyDelete
  22. Author, Socrates -

    Before you two get up on your high horses about your life with disabilities and the challenged and perspective that it brings, please remember that other people have experience with autism as well. Yes, having a disability can make life more challenging and having bad experiences with clinicians that don't understand you can be a pain in the ass.

    Now try being a parent to three children on the spectrum. I have had almost 16 cumulative years of experience with autism, concentrated down into 6 years and have the grey hair to prove it.

    You haven't seen an autistic meltdown until you have seen three of them going at once, all feeding into each other. And if you think managing one set of sensory aversions and rigidities is challenging, try balancing out three conflicting sets of them at once. You get it wrong and meltdown city here you come.

    If you think that advocating for your own needs with medical professionals who won't listen is bad , try it on behalf of your children. Now it isn't just your future that is affected, but you your children's future. I have to deal with medical professionals interacting with my children on a daily basis. I am lucky in that most of the team working with my children are knowledgeable and know what they are doing.

    But even still, my wife and I need to be experts because we are the ones who have to call the shots and advocate for what our children need - sometimes in direct opposition to what the "experts" think is best. Having to do that takes parental responsibility to a whole new level.

    So please spare me the "you don't understand" riff because I really don't think that you can understand what it is like to be a parent to children with moderate autism.

    We all have lives in which we have had to deal with autism and we are all entitled to have our own opinions about what we think about it. Just because you have a certain experience does not mean that your opinion is anymore correct that anyone else's.

    ReplyDelete
  23. I'm not talking about autism when I talk about experience I am talking about the experience of spending most of my adult life caring for severely physically disabled relative.

    I think when people try and lecture me how hard it is to be a parent of a child with x, y, or Z they should realise that the challenges of care are challenges of care, and you can spend more time looking after a parent than most parent's will spend looking after there children.

    I'm not just talking about pushing her around in a wheelchair, I am talking about every physical activity from morning to well into the early hours of the next morning.

    During that time most of my social contact was with other disabled people with a variety of different impairments in what is loosely termed the disabled peoples movement. Like I say, that is where I get my pride from, it's a different world and a different set of attitudes and one the autism world has a lot to learn from.

    As for meltdowns, well I have had to handle more than one at once,and I am talking fully grown adults here, I do know how one person's sensitivities can be set off by another's rituals and it all has a certain Shakesperian inevitability in the denouement.

    Of course you have to experience one yourself to understand what it does to you. Do you think I have never had spectacular and public meltdowns, to the extent that the cops have been called? It's something I have had to live with, and also to live down as someone who is all very well aware of the consequences afterward.

    ReplyDelete
  24. I think you are still missing part of the point. It is one thing to take care of people as a job, you eventually will get to go home and get a break. It is something else entirely when you live it 24 hours a day, 7 days a week for years and years.

    Talk to me about experience when you have been up all night dealing with children unable to sleep and unhappy about it. Then go to work the next day with less than an hour sleep only to have to come home and do it again. Now repeat that everyday for 3 or 4 weeks straight.

    Regardless, we all have experiences with autism, and trying to claim the high grond because yours are more profound is just a little silly.

    And none of this is really relevant to the idea that there are different functioning levels in people with autism.

    ReplyDelete
  25. MJ, Try living with an autistic brain for more than 40 years and you'll know what woe is.

    ReplyDelete
  26. MJ you really are missing the point,

    I did care for my mother 24/7, there was no work for me to go to in the morning, that was my work and I lived on the premises.

    It is actually hard for me to recall now at this distance just how tough that was, nowadays I cope with rather different stresses.

    Resistance to change is not a feature of the autistic spectrum that is doled out to one "colour" only, it exists across the whole range, and it was adapting to the major change in my life without my mother that led eventually to my diagnosis.

    ReplyDelete
  27. So your mother had autism then?

    ReplyDelete
  28. pD, It looks like a few of your earlier comments from yesterday got stuck in blogger's wonderful spam filter. I released them and they should have appeared by now.

    Sorry about that.

    ReplyDelete
  29. Are you being deliberatly misunderstanding here. Caring for anyone is tough, no matter what the cause.

    My mother had severe rheumatoid arthritis, asthma and COPD, the combination of which killed her eventually, but that was not till after she had not survived a burst appendix with peritonitis, septicemia and cervical cancer at one time or another. A tough lady who needed a lot of care, nursing care from me and she would have died a lot sooner without it.

    Of course the ability to care for someone else renders on automatically non autistic, rather like marrying or doing a PhD doesn't it?

    If I'd have got proper support during those years instead of having to support someone else, who knows what I might have become, I'm making up for lost time.

    ReplyDelete
  30. Lovely, lofty, engaging - but let's cut to the chase here: get rid of the cursed gate-keepers! Really!From the system according to it's abilities, to the person according to their needs, to paraphrase.

    Yeah, I get disgusted because -people think my son doesn't need extensive support because their experience is limited to f/k/a "HFA' or "Aspie" populations. . . -the other side: people who deny support to those who really need it because of verbal ability, eg.

    This is reminding me of the framentation various social movements went through in the 80's: for example, Women's Lib v. divorcee's rights, v. lesbian rights... well, we can hang together, or they'll hang us one by one.

    ReplyDelete
  31. I think a lot of people misunderstood what the author was trying to say. If they simply read what the article PLAINLY says, they would realize that there’s nothing offensive about it. This statement seemed to generate a lot of anger, “The label of Asperger’s at least gives observers the impression of intelligence and ability. But, when most people think of “autism,” they think of someone who should be institutionalized and cannot live independently. Therefore, if people with Asperger’s are merged under the autistic group, brilliantly gifted and capable individuals could be unfairly stereotyped as incapable and unprofitable.” But, the author DID NOT say she agreed with that stereotype, she simply said that it existed. How is stating that a stereotype exists the same thing as agreeing with it? It’s not! She already thinks it’s unfortunate that people with autism are unfairly stereotyped and she just doesn’t want those stereotypes extended to people with Asperger’s. What’s so offensive about that?
    “Imagine how much worse this stereotyping will get when people with Asperger’s are placed under the same category as severely autistic people who never learn to speak, who never learn to independently tie their shoes or brush their teeth, and who need assistance with every aspect of their life.”
    This is NOT a stereotype of autistic people. If you just read the sentence carefully, you should notice that she didn’t say ALL autistic people never learn to do these things. She said SEVERELY autistic people never learn to do these things. She recognizes that Autism has a wide spectrum. All she’s saying is that if people with Asperger’s are grouped with the autistic people on the SEVERE END of the spectrum, society might wrongly assume that people with Asperger’s suffer from the same infirmities as people on the SEVERE END of the autistic spectrum.
    “I don’t think it makes sense or does any good to put a strongly verbal Aspie with an advanced vocabulary in the same category as autism when some autistics never learn to speak.”
    Again, she didn’t say ALL autistic people never learn to speak. She said specifically SOME autistic people never learn to speak. Big difference!

    I honestly don’t understand how people can come to these false conclusions about the author’s intentions, when the BASIC TEXT says that the author clearly had good intentions and DID NOT stereotype or demonize autistic people.

    ReplyDelete
  32. By the way, I strongly encourage you to read Cordelia's comment, the last comment, on the original blog post.

    ReplyDelete
  33. Anonymous,

    I went back and reread the original post and I have to say that I still disagree with you. The entire piece can basically be summed up as "we don't want to be associated with them".

    It doesn't really matter that some of the comments are phrased as "the stereotype is this" because, inevitably, the next statement is "and we don't want to be grouped in with that".

    If the author felt that the stereotypes were unfair then she should have said that. She should not have presented the stereotypes and then said (or implied) that while other people with autism might be that like, aspies aren't.

    And actually, the phrase that I found to be very offensive was this one -

    "This proposal will do more harm than good because it will further perpetuate stereotypes and misunderstandings about Asperger’s, it will serve as an insult and a mockery to those who are severely affected by Asperger’s"

    That statement alone makes my entire point and renders all of yours about "she never said that" moot. She said, in plain text, that grouping people Asperger's in with people with autism would be "an insult" and a "mockery" to those with Asperger's.

    ReplyDelete
  34. I understand where you're coming from, MJ. But, if you follow the structure of her thesis, you'll see what she meant by "an insult and a mockery."
    "This proposal will do more harm than good because it will further perpetuate stereotypes and misunderstandings about Asperger’s, it will serve as an insult and a mockery to those who are severely affected by Asperger’s, it will cause further confusion and ambiguity in diagnostics, and it will attack the identity in which many Aspies, like me, take pride."
    That's her thesis statement. Each phrase of the thesis is an introductory phrase leading to a body paragraph. The phrase "it will further perpetuate stereotypes and misunderstandings about Asperger’s" introduces the paragraph that starts with this sentence, "First of all, many Aspies already suffer enough from the negative stigma and stereotypes society holds against them." The phrase "an insult and a mockery" leads to the paragraph "Additionally, I also find the DSM-V proposal to be an act of insensitivity toward the adversity people with Asperger’s encounter." In other words, the DSM-V proposal to call Asperger's a "mild form of autism" is an "insult and a mockery" to those "SEVERELY" (note my emphasis on that word) affected by Asperger's because Asperger's is NOT mild. It makes it sound like Asperger's is easy to live with when it's NOT. As an Aspie myself, I completely with that assertion. Like the author, I also get offended when Asperger's is called, "a mild form of autism" because there's nothing mild about the adversity we Aspies endure. Maybe the author shouldn't have used the language "an insult and a mockey," but that statement wasn't intended to put down autistic people. It just meant to say that the DSM-V proposal downplays the seriousness of the hardships Aspies go through. I hope that makes sense.

    ReplyDelete
  35. MJ, you say that the article says, "We don't want to be associated with them," and that statement might sound harsh initially. But, I think the author has legitimate reasons for "not wanting to be associated with them." I think it's reasonable to be concerned about being given a label, like "autism," that carries negative connotations because stereotypes have far-reaching consequences, like being denied opportunities and unemployment, as the author alluded to. Also, the statement that people with Asperger's have strong verbal skills, while autistics don't is a fact, not an insult. Some forms of autism can be so severe that people never learn to speak, but that's never the case for people with Asperger's. Therefore, it's simply illogical to put them in the same category. That DOESN'T mean that people with Asperger's are better than autistics. It just means we're different. I thought this article was just rational, not offensive.

    ReplyDelete
  36. Anonymous,

    I can understand what you are saying but that doesn't change the underlying message. The underlying message is that the author does not want to be lumped in with people who have autism.

    I should remind you that since Asperger's is currently considered a form of autism that what the real message is that the author is arguing for separation - because she doesn't want to be associated with "them".

    That might not have been the author's intent but that is certainly what she said. And as someone who is advocating for the rights of the disabled, she really should have known better. If what you want is to be accepted then what you need to do is demonstrate that in your words and actions.

    You do not point at those who are more severely effected by the same condition and ask not to be associated with them.

    I'm sorry, but as a parent of three of those "other" children, I take offense at the idea that it would somehow be degrading for people with Asperger's to be associated with them. My children and I certainly take enough abuse from the general public and we certainly don't need to hear it from other people on the spectrum.

    ReplyDelete
  37. Hi Robyn,

    It is not necessarily true that people with a diagnosis of Asperger's have "strong verbal skills". The actual diagnostic criteria is no delay in functional communication. You could just as easily see this same lack of delay in a child with pdd-nos. And just because something is delayed doesn't mean that it doesn't develop as the person gets older. I believe there a some number of adults with autism who were less than verbal as a child but can fully talk as an adult.

    The other difference with Asperger's is that the person has to be of at least normal intelligence. But that is not unique to Asperger's either - people with autism and pdd-nos can both have normal to above normal intelligence. (Although in classic autism there is a high degree of ID but whether that has to do with actual intelligence or lack of ability to understand and communicate is up for debate).

    Other than that, there are no real differences between Asperger's and the other types of autism. Or at least not in the diagnostic criteria.

    One other point, and this is just be nitpicking as a parent, just because a person with autism can't speak or doesn't speak well doesn't mean that they are severe. Two of my daughters can barely speak but they are much more social and much less rigid than other children with autism. They make good eye contact and they are very affectionate. If anything, they are on the moderate to milder side of autism - in spite of their problems expressing themselves.

    ReplyDelete