Susan's Blog

Tuesday, February 21, 2006

Is Autism the New Gay?

I came across an excellent blog and post today, courtesy of my ever-industrious, web-surfing husband Ned. “This Mom” talks about a list she found, of all kinds of famous people who had/have Asperger’s. As I scrolled down and saw the names, some of whom did not surprise me, like Einstein and Ludwig Van Beethoven, my all-time favorite classical composer (for his Archduke Trio, his Piano and Cello Sonata op. 69, for the Pastorale, and for the second movement of the 7th Symphony). Anyway, also listed were Woody Allen and Keanu Reeves!

Come on. I will grant you Einstein. I will grant you my Beethoven, I studied him in college, I know about the whole “Immortal Beloved” thing and his difficulties relating to people, his mood swings, his savant-like skills (he composed when he was deaf??!!). But Woody Allen and Keanu Reeves? Here are my questions: 1) Why Woody and Keanu? 2) What evidence is there?
3) Who diagnosed them?

But the bigger question here is, what is going on in our society that is making autism so much the catch-all problem, the designer diagnosis of the decade? And don’t tell me that Woody and Keanu had too many vaccines! [JOKING]

Seriously, this list reminds me of that list that circulated not too recently, outing all the supposed gays in history. Or Adam Sandler’s excellent, funny Chanukah song, which outs Jews. This Mom’s newest list illustrates that autism has made it officially to being A Trend. I used to wish for this, years ago, when I felt all alone with our diagnosis and no information, no good way to help my Natty. I remember envying the AIDS Action amalgam, with their ubiquitous red ribbons, the breast cancer pink people, wanting so badly for their to be some recognition for what I was going through (but when the puzzle piece ribbon finally made its debut, I have to admit I cringed, though, purely from an aesthetics perspective: the glaring primary colors, the canary yellow next to the royal blue and the fire engine red, made me sick. I hate those colors! If you look, you will see nary a primary puzzle ribbon on my site; only one puzzle piece, in Restoration Hardware green).

Now autism has its recognition. And it’s almost too much. I hear about some people who are “on the spectrum” and I think, “yeah, me too.” Some of them simply are not! Like those who “de-auticize” upon trying a new diet (this is my friend NancyBea’s brilliant word), a new this, a new that. It is kind of a mystery as to why some lose their diagnoses. Could it be that many are misdiagnosed because autism is the new ADHD? Could it be that there are many different disorders that present as autism when the kid is 18 months old, but clearly become what they are (something else) as the child develops? Could it be that some children develop differently, end of story? I am not saying that these people have no issues; I am saying that perhaps they do not have autism. Or perhaps autism should not be lumped in with Asperger’s? Just a thought.

The problem with too many people on the autism spectrum? It draws away resources — financial and yes, perhaps even compassion — from those who truly are. I’d like there to be infinite money and love in the world to encompass my Natty, Woody, and Keanu, embracing them in their struggles, but there just is not. And I don’t want Nat to get less of anything because Woody and Keanu have sopped it all up for themselves, only for people to then look at them and say, “Autism/Asperger’s? Big deal!” It is a big deal. My guy struggles daily and will always struggle just to survive in this world. He needs all the help he can get. Woody and Keanu? Maybe they need help but it’s a different animal altogether.

There needs to be new definitions, new words for what these other people “have.” Or maybe we can go back to some of the old words. The polite, respectful ones, that is.

38 comments

Hi,

I don’t know if autism/asperger’s is being overdiagnosed. Certainly there is a sort of provisional diagnosis that is usually given to children under 3 because something that looks a lot like autism might disappear and then it wouldn’t be autism, by definition.

I know that Dr. Ozonoff, (I don’t think she’s gay or Jewish or autistic) from the MIND institute described a woman who brought her child to the MIND institute basically demanding an Asperger’s dx for her child. To some people Asperger’s sounds like the equivalent of genius (though I don’t know how widespread that thinking is). The girl’s proper diagnosis according to Dr. Ozonoff was bipolar.

It’s possible to be both AS and bipolar, but Dr. Ozonoff is very experienced with AS, even with AS in girls. I trust her dx.

As for Woody Allen and Keanu, it’s possible. One trait of autism is the ability to act, maybe all autistics don’t have it, but there’s the prodigious memory and echolia and echopraxia that allows some autistics to go into acting, literally, the rest of us use it to varying extents to “pass” for normal. Hence the title of the book, “pretending to be normal”, (“Passing for normal” is an interesting book about Tourette’s and OCD in a woman who desperately hopes she doesn’t look autistic.)

Stephen Spielberg and Dan Akroyd both have “outed” themselves. I think Spielberg is Jewish, I don’t think either are gay. They both have state that they havve Asperger’s.

It’s not that cool to say you have Asperger’s in real life. You can lose your job. Bill Gates came “out” momentarily and went back in when someone went for his throat saying that he was like diseased or something… per a friend who knows the situation.

If I were Keanu Reeves and found out my name was on that list and I didn’t have AS, I’d demand that they take it off.

Just because someone appears to have a successful job doesn’t mean that they don’t have a serious handicap. Some people fall into all the right situations, they get really lucky.

Look at Andy Warhol. Not Jewish, but gay and way out there autistic. He got lucky. His obsession was able to fit in where he was and he was accepted for his weirdness, some of which he capitalized on and some of which he wished he could make go away but coulndn’t.

Andy Warhola born in another time with slightly different talents would have been killed for being so weird.

So anyway, yeah ASDs might be getting overdiagnosed, but the best epidemiology says that 1 in 166 people are on the spectrum and that’s the historic number as well as the current number.

I’m not sure about Beethoven, maybe. Certainly, Einstein (Jewish and not gay), and Tesla (probably not Jewish or gay), Newton (not gay though some think so, and not Jewish, I think), Nabokov (not gay, not a child molester and might be Jewish…), Michelangelo (not gay though said to be, and not Jewish), Glenn Gould (not gay, not Jewish… I think), Lenny Schafer (well, could be on the spectrum, not gay and is Jewish…).

When I see the long lists of famous autistics I usually agree with most of them. I don’t think there’s much evidence for Van Gogh, he’s been diagnosed with every known disorder.

I hope that there is always funding to help autistics who need it. Some of them might even have successful careers and then crash and need help.

Oh, and lots of autistics seem to have non-standard sexual preferences, so being gay is something that is a tip-off to me to look to see if the person is also on the spectrum. The two things are not synonymous.

David Kirby? No, not autistic, he’s just a bozo.

— added by Camille on Tuesday, February 21, 2006 at 11:44 am

Thanks, Camille! You are right: all of the above may need help at some time or other and should be able to get it. Sorry to be flippant or disrespectful. I hope there is, otherwise, no evidence of harm in my post!

— added by Susan Senator on Tuesday, February 21, 2006 at 11:51 am

thanks for the link, susan, and for adding to the discussion. i think the issue is that having Asperger’s (which may or may not be a version of autism, that debate is still raging) or having autism brings with it some very real challenges and hardships. i never doubted the intelligence of anyone on the spectrum, their worth, their contribution, their right to respect. i just worry that if we tout this list (it was longer–i edited it for the post) then there may be a flip side to the valuable realization that ASD may bring with it a particular unique and important perspective and ‘mind’ and that is that for every Warhol and Einstein there are many hundreds (or more) who fall through the cracks, who never leave home, who have no friends and no meaningful work, who feel outcast and overwhelmed much of their lives. that is what worries me. is it possible to embrace all people without glamorizing, without paying attention to very real difficulties? for the person with ASD? for the families? is it possible to move toward strengthening the weaknesses without being accused of not accepting the person? i talk about my son’s aspergers a lot. there is no stigma attached to it for me. and there ought not be for anyone with ASD.

— added by kyra on Tuesday, February 21, 2006 at 3:04 pm

Hi Susan,

I didn’t think you were being flippant or disrespectful to anyone. I can understand your concern with autism becoming too glamorized and simplified. My own child gets some aid from the state, but only because of xyr physical disability. There is no real help (not without fighting a huge battle, possibly involving lawyers) for people with PDD,nos or Asperger’s, usually, here in California.

That’s awful.

Probably people like your son need more help than Asperger’s or PDD,nos people, (though I don’t know if that’s been looked at closely), and so the more money should be available to them, that’s logical.

I’d like some help, might benefit from some help, but not like my child would (especially if I wasn’t here).

I really think though that autistics who can’t/don’t talk or not fluently, probably need more support than those who do, on the average. If only because of the kind of prejudice that is waged against them.

I hope your son always gets what he needs without a fight.

I don’t know if the Dan Akroyd interview is still online. He was interviewed on Fresh Air, I think… some radio program from NPR.

He seemed to be grateful to dispell the rumour that he had been schizophrenic as a child. (He has Tourette’s and Asperger’s and was misdiagnosed…. heh… yup)

🙂

— added by Camille on Tuesday, February 21, 2006 at 3:51 pm

Stellar reply, Camille. Actually, I could write a whole lot about this … but just can’t. One thing I can attest to with absolute certainty: Acting skills can take one a very long way — in a variety of settings. Thank-you for bringing this up, Camille. BTW, I have had my own aspie/autie “list” before ever seeing any of the on-line lists (and this one discussed today I saw a long time ago). Anyway, there are many people on ‘my’ list who I still don’t see on any of the regular lists ; ) AND, a big BTW, some of us have always depended upon “the kindness of strangers.”

Note: In editing this, I see Camille has added a second reply. This reply of mine is in ref. to Camille’s first reply/post here.

— added by hollywoodjaded on Tuesday, February 21, 2006 at 4:00 pm

Those lists have been in circulation for some time and historical studies have been done tracing autism to the 18th century, the start of the modern world. Autism is a civil rights issue and we all have a lot to do in fighting the good fight.

— added by kristina on Tuesday, February 21, 2006 at 7:50 pm

PS. Newton was deeply religious—he wrote many theological texts, as analyzed here:

http://unfailinglove.org/science_religion/theology.htm

— added by kristina on Tuesday, February 21, 2006 at 7:54 pm

Hi Susan!

“Could it be that there are many different disorders that present as autism when the kid is 18 months old, but clearly become what they are (something else) as the child develops? Could it be that some children develop differently, end of story?”

That’s a lot of ‘something elses’. I guess not many people know of the nature of autism, so there are many mistakes. EG Ozonoff and bipolar, even though rapidly cycling bipolar can be told as early as 18 months (according to Donna Williams who has it as a comorbid).

When I was a girl 1 in 500 is a lot. I haven’t got my head around the new figures nor what they mean.

You’re right about finances and compassion, of course. I do not really approve of autism as comorbidity.

— added by Bronwyn G on Tuesday, February 21, 2006 at 8:48 pm

I mean COMMODITY in my last sentence.

— added by Bronwyn G on Tuesday, February 21, 2006 at 8:48 pm

Hi Susan,

Yes, there is a move in the autistic community towards positive identity and pride, and assertion of the right to be different in ways that will require the surrounding society to change. (But do not succumb to the pernicious false dichotomy that claims that that assertion is a denial of the need and right to acquire skills and overcome obstacles: those are words that others, who fear sharing power with us, put in our mouths.)

And yes, our community is going through the kind of identification of well-known historical predecessors that the gay community has gone through. (My daughter’s best friend is gay; they joke that my daughter gets Einstein and Glenn Gould, and her friend gets Alexander the Great and Tchaikovsky. Happily, they are delighted to share Andy Warhol and Alan Turing…)

I think that historical identification process is a natural part of the community’s coming into its own. For some of us (but not all), it provides role models; for all of us, it provides people that the larger mainstream society will recognize in a positive manner.

I was a participant in an academic conference on the representation of autism in the media, in the arts, and in social thought last fall (see [http://www.case.edu/affil/sce/Representing%20Autism.html]). One of the conference organizers has a severely handicapped now-adult autistic son. His son’s behavioral maladaptations have made life often very hard and isolated for him. I think a significant factor in the development of those maladaptations is the fact that back when his son was little, there was far, far less information and support, including far less firsthand information from autistic people able to communicate their experiences. He and his wife literally had no idea about how to establish the beginnings of *reliable* means for their son to communicate distress and desires. Establishing that lifeline absolutely has to be Job 1 for any autistic person (and family) who does not naturally acquire such means, whether through the acquisition of speech or otherwise. And even the state of the art in those days proved clueless about how to help make that happen, for most people.

Despite the difficult life the conference organizer has led, he nevertheless quite pointedly reached out to those of us on the spectrum with skills his son does not have and without the severe handicaps he does have. He said to me that he firmly believes that a rising tide lifts all boats — that wider public acceptance and removal of barriers pertaining to those characteristics of autism that are handicaps primarily because of lack of societal accommodation will benefit his son as well as those less severely handicapped.

This underscores a fallacy that I think is just as pernicious as the one I identified above, if not more so: the zero-sum-game fallacy, the notion that there is a finite pie of societal attention for autistic people, and that if those on the spectrum who do not have handicaps as severe as those of one’s own family member somehow get more attention, it will be at the expense of one’s own family member and family. That is simply false.

I am thoroughly *against* somehow naming the less severely handicapped folks on the spectrum “something else”, whether that “something else” is “Asperger’s”, “shadow syndrome”, or some other label. I think that, more than any purported zero-sum-game of attention or even of resources, leaves the more severely handicapped in a permanent underclass with a pernicious catch-22, a sort of perversion of Groucho Marx’s famous quip about restricted country clubs (“I wouldn’t belong to any club that would have me as a member”): if any member of that underclass acquires the skills to meaningfully self-advocate, they are then excluded from the underclass by definition. That is what the Lenny Schafers of the world would have us believe.

The truth is that the more we learn, the more we *listen to the people capable of describing their experiences*, even if they are not as severe or intense as one’s own family member’s apparently are, the more we are able to *help* our own family members to communicate distress and desires, to mitigate handicap, to acquire vital skills, and to replace maladaptation with constructive adaptation.

And I think any attempt to draw a line somewhere on the spectrum that separates “truly autistic” people from “Aspies” or “shadow syndromes” or whatever you want to call the spectrum region on the other side of the line is going to fail, because there are too many people who defy any simplistic attempt to define “low functioning” and “high functioning”. And an individual’s position on the spectrum is a moving point, as s/he develops and acquires skills. That process does not stop unless it is starved through loss of hope. Because of that motion, that fluidity, that *life force*, the spectrum really is a continuum; there is no single rigorously identifiable point of discontinuity.

What I really think we should do is simply say that anyone who shares autistic characteristics — primary among them *sensory* atypicalities, which are the thirteen-ton elephant in the middle of the cocktail party, at least the figurative cocktail party at which the DSM and ICD diagnostic definitions of autism were written, which astoundingly make no mention of them, despite the fact that sensory atypicalities of one kind or another are the characteristic shared most universally across all regions of the spectrum — is, well, *autistic*, and that different autistic people have different mixes of concomitant handicaps and strengths. We should be allocating resources to identification and mitigation of autistic *handicaps*, with resources allocated on *that* basis. We should destigmatize the notion of being autistic per se, so that people who share autistic traits but are managing to get by in life without a diagnosis, and do not want the stigma of a diagnosis, can come forward and strengthen our community with their presence.

This is no pipe dream. Herzl: “Im tirtzu, ein zo agadah” — if you will it, it is not a dream. It will take a lot of pressure and a lot of work, but I really do think that if we — and all our potential allies — unite around getting society to stop differentiating between “low functioning autistic” and “high functioning autistic”, and to *start* differentiating between autistic ways of being, and *handicaps* concomitant with autism and present in varying degrees among individuals, and to allocate resources on the basis of the latter, and to accept the former as valid ways of being, we can make it so. I’ll conclude by paraphrasing Beethoven (whom I love too, particularly for the late sonatas and string quartets), with a dash of hutzpah: “*unser* Zauber binden wieder, was die Mode streng geteilt” — our force will make whole, what convention has divided.

*That* is what I work for, as a parent and simultaneously a self-advocate: the day when it will not produce cognitive dissonance in the average Joe to hear people like me, *and* people like my son, *and* people like your son, all described, without stigma, as autistic — yet when it will also be clear that the *needs* of those different autistic people are different, *and when those needs will be met as a matter of course*.

— Phil Schwarz
(Jeremy’s dad)

— added by Phil Schwarz on Sunday, March 12, 2006 at 4:51 am

Thanks Phil, for articulating the social justice issues that are at stake.

As the mother of a child that is on the edges of the spectrum — moving in and out of the formally diagnosed category — I’m disturbed about Susan’s framing of these issues as a competition for limited resources among “real” autistics and “fake” autistics. Divide and conquer is always the way groups are kept down.

If we were to look at the full complexity of these issues, we’d also have to include the clear economic disparities that allow those of us with financial, cultural (including educational), and social capital to secure greater resources for our children, regardless of their level of ability or disability.

— added by MothersVox on Sunday, March 12, 2006 at 3:37 pm

Hey all –
Thanks for making me think, and rethink, my biases here. You, Phil, and Mothers Vox, make a great point: this should be an issue that is about all of us, about a pie that is not big enough, rather than about deciding who is and who is not autistic. Why should I (we) get bogged down in that? There is so much sh&* already in this world to fight (for)!

BTW, Mothers Vox, I hope you come see me when I read at the Barnes and Noble in Union Square, March 21!

— added by Susan Senator on Sunday, March 12, 2006 at 10:17 pm

Do you have a child that’s autistic? I have a 5 year old who was diagnosed with PDD-NOS with autistic tendancies. He is now 5 years old and I still haven’t had a conversation with him. He talks, but he doesn’t converse and there are many things about “language” use that he doesn’t understand. His comprehension and processing of language is still deficient. He also doesn’t socialize much, or lacks the correct skills for making friends. He’s completely independent with respect to living skills and he’s just about main streamed. I think he’s going to do alright as he gets older. But just because he’s not classical autistic does not mean he isn’t or that his diagnosis is bunk or a result of “overdiagnosing” our societies’ children. It might be that many autistic children slipped through the cracks of diagnosis because they weren’t severe enough.

But one thing is certain. WITHOUT this diagnosis, my son would lack the services he needs to succeed and become mainstreamed into his classrooms and into society as a productive adult. It is not to imply that he wouldn’t be otherwise. It’s just to say that these services (speech, occupational therapy, specialist in the classroom with him) will give him the boost he needs to help him excel at a quicker pace.

— added by Anonymous on Saturday, February 23, 2008 at 11:26 am

You know, some of us Autistic folk don’t need any ‘help’ at all, but understanding would be good. My wife and I as Aspies, tend to give help.

— added by Paul Wady on Tuesday, February 26, 2008 at 5:19 am

More money would be available to help people with Autism (all forms), if so much of the money weren’t spent on eugenics. Instead of funding our elimination they could use that money to do things that actually help us. Funding studies on ways to “cure” me, doesn’t help me. It doesn’t help me get a decent paying job. It doesn’t help me pay my rent. It doesn’t do anything useful to me at all. So lets stop treating autism as an epidemic and national emergency. Lets stop funding the elimination of autistic people. Lets spend the money on things that genuinely help autistic people.

— added by PurpleMutant on Thursday, March 13, 2008 at 3:57 pm

While I understand your concern regarding potentially wasted resources, you should consider that Keanu and Woody indeed suffer from Aspergers but that they received the help they needed as children to adapt in the world given their difficulties and as such, are living the relatively balanced, normal-seeming life that you obviously desire for your child.

— added by Kelly on Saturday, March 29, 2008 at 8:19 pm

Hi,

My name is Lauren, and I thought that your blog was wonderfully refreshing. I am replying in particular to one of the comments, which stated that you could “loose your job” as a consequence of stating that you have AS. I find that to be an act of outright discrimination. And in fact, it is against the protocols enumerated in the Americans with Disabilities Act. So if you state that you have Asperger’s, you will not lose your job. However, I do believe that people will treat you differently. Society is one of the cruelest and most discriminatory entities in existence. There is very little room for deviation in the business world. And I really do believe that difference needs to be appreciated. After all, one of the facets of Asperger’s Syndrome is brilliance; they have an unusual proficiency for comprehending abstract ideas, and an unrelenting capacity for knowledge. I myself was diagnosed with the syndrome when I was 17, and I know that it was a misdiagnosis because I have always been very social and have always had the ability to relate to people and empathize with them. My psychiatrist even thinks that I don’t have it. It is her contention that I was misdiagnosed, that I was one of those kids who, as you had mentioned, was just “different”. I just marched to a different beat. After all, ‘difference’ doesn’t imply a syndrome. I’m really tired of the new-age philosophy that every deviation from the “norm” somehow has to fit neatly into a syndrome. It’s stupid, and it’s really narrowing. I think that rather than trying to attribute someone’s differences to a ‘syndrome’, we should instead embrace these differences. This is why I look at some of the names of people listed as having autisic tendencies and honestly laugh. I sincerely doubt that Keanu Reeves has Asperger’s Syndrome. So the guy’s a little quirky?? Does it ever occur to people that this is simply an aspect of someone’s personality?? I mean, seriously. Not everything fits neatly into a diagnosis. And this is precisely why things like Asperger’s Syndrome are misdiagnosed. This is also why I feel I was misdiagnosed with it; I think I was just different. That’s all.

I don’t, however, refute the fact that I have autistic tendencies. I’m very OCD, and I tend to fixate on a problem until I solve it. But I think that these are merely behavioralistic aspects of my personality, and not something which can be attributed to a neurological disorder such as autism. The difference is that my behaviors can be controlled, where as the behaviors in autistic spectrum disorders cannot. However, as was pointed out in one of the comments, one’s diagnosis along the autism spectrum is not fixed. It is pivotal. One caveat I would like to issue here, though, is that it is much harder for those who are more severly affected to excoriate these behaviors and adapt to their environments. This is why I think that there should be a distinction made between autism and Asperger’s. While autism is marked by more acute social and cognitive deficits, Asperger’s Syndrome is merely a behavioral condition. Therefore, the behaviors of those with Asperger’s Syndrome can be modified with relative ease, whereas those with autism often cannot adjust to their environments without additional assistance. I strongly believe that Asperger’s Syndrome is something that can be outgrown. In fact, I have had the experience of working with people with the syndrome, and 9 times out of 10, I have witnessed a complete transformation with their behaviors. Overall, these people have experienced a high rate of success with adjusting socially and cognitively, and more often than not, they are fully capable of leading functional, successful lives.

I still wonder at the people who are misdiagnosed. More often, people are misdiagnosed with Asperger’s than with autism. Because most people with Asperger’s are so highly-functional, it is a rather ambiguous diagnosis. And more often than not, the people who are misdiagnosed are the ones like me, who had gone through a rough time during the adolescent years and are simply “different”. So I greatly question the validity of the diagnosis. I have communicated with others who have been misdiagnosed or are suspected to have been misdiagnosed, and what I often find is that they are perfectly socially-adjusted individuals who are just slightly abberant from the norm.

The crux of this is that these misdiagnoses are really doing people a disservice. And this not only goes for Asperger’s, but for other diagnoses as well. I think that it is a scam on the part of pharmaceutical companies, just so that they can lure unsuspecting clients into believing that they have a diagnosis, so that they can spend thousands of dollars on medications a year, while the proceeds go directly to the pharmaceutical companies. It is all a hoax. And this is why I greatly distrust the psychiatric industry. I think they are all after out pocket. And if they were truly auspicious, if they were truly after humanitarian motives, they would appropriate more money toward neurological reserach and funding for such research, rather than developing new-fangled formulations to treat diagnoses that may or may not exist. And if they were truly working under the auspices of helping people, they would improve their diagnostic practices. They would change the way in which they test and treat mental disorders, such that the people who truly need help can receive the proper treatment. The problem with all of these misdiagnoses is that it is robbing the people who truly have the syndrome from receiving the proper treatment, while at the same time it is burning a hole in the pockets of those who do not, in fact, have such conditions. So I think that our pharmaceutical practice is in dire need of reform. And it needs reform now!! It should not be about money, but about curing psychological illnesses such as austism, bipolar, and schizophrenia, and providing care and services to the people who need it most. Our health care system needs reform, and it needs to start now!!

— added by Lauren on Saturday, April 26, 2008 at 1:43 pm

To respond to Lauren’s comment that Asperger’s is merely a behavioral condition, I would like to state that Asperger’s is not something that can be outgrown. When a person truly has Asperger’s Syndrome (and has not been misdiagnosed– and it is much more common for someone to be misdiagnosed as not having Asperger’s than to be misdiagnosed as having Asperger’s)it is a life long thing- not something someone matures out of. Life skills that one acquires over time may help, however. Early intervention in the form of things like taught social skills definitely can help. As someone who has Asperger’s and has a close relative with severe Autism I really do believe they are on that same continuum. I am higher functioning, but I am not as highly functioning as a neurotypical. I cannot become neurotypical and no amount of hard work will make me that way. The lack of services is something that affects people on all points of the spectrum. Unless a person happens to fit just the right slot for an existing service (and good luck with being on the waiting list and paying for such a service)then there is typically nothing. There is always some new cure and some new breakthrough. In reality, change is slow and back breaking work for all involved. I have worked before with individuals on the spectrum. They will always be on the spectrum, and it was difficult and intense work for me, but I was good at it because I understood in a way others might not necessarily be able to. To me, that is the biggest puzzle of all. How do we create this understanding when it seems like we aren’t always even speaking the same language– all these different groups wanting so many different things?

— added by Anonymous on Monday, April 28, 2008 at 5:45 am

ASPERGER SYNDROME JOB FAIR FOR COLLEGE STUDENTS AND ADULTS. Parents are welcome to. Please come to the job fair to learn about get a job and
get interviews from some of the businsses. Plus to learn about the housing program from Allies INC.

THERE WILL BE DOOR PRIZE

ASPEN-ADULT ISSUES OF HUNTERDON COUNTY. OPEN TO ALL STATES IN USA.

There will be a $5.00 entrance fee for non member of Aspen membership to aspen will be available.

Bring your resume’

June 22, 2008 From 3P.M. to 5P.M.

HealthQuest

310 Highway 31 North

Flemington NJ 08822

908-782-4009

GUEST SPEAKERS WILL BE AT THE EVENT.

A representatives from Allies, Inc will be present to talk about job coaching and housing program and tax incentive information.

Patty Kowalchuk from thr ARC of Hunterdon also will talk about upcoming support. For more information please call Matthew or

Caorlyn Loscialo at 908 236-6153 The event is being sponsored by Artworkglobalgallery LLC

And aspergerfriends We hold monthly meeting on the 3rd Sunday of the month. It is a support group for parents and college students

and adult. We have outing each month. This a great time to meet with other college students and adults with asperger syndrome at the job fair.

Parent can come and talk with other parents who have a son or daughter with asperger syndrome.

ASPERGERFRIENDS WEB SITE HAS LOT OF INFORMATION ON ASPERGER SYNDROME.

ASPEN HAS SUPPORT GROUPS.

JOB COACHING AND THE HOSUING PROGRAM AND THE TAX INCENTIVE.

CALL MATTHEW OR OR CAROLYN LOSCIALO FOR MORE INFORMATION AT 908 236 6153

— added by Anonymous on Saturday, May 31, 2008 at 4:49 pm

I dunno…I’m still skeptical. Asperger’s is INDEED something that you can grow out of. I really think that Asperger’s Syndrome is really overdiagnosed, and that AS is actually high-functioning autism. I think that people CAN get off the spectrum, they CAN change their behaviours. So people who have been diagnosed with the syndrome (and not misdiagnosed, as I have and some of my friends have) can change their behaviors such that they do not have it, and it does not influence their lives. Look at what John Nash did with his schizophrenia?? He told himself that those delusions and hallucinations were not real. So he was able to conquer his schizophrenia and regain sanity. We have an amazing amount of power over our minds. And the human mind is fluid, it is not static. We are comprised of a million different identities and personalities. It isn’t dissociative identity disorder or anything, it is just that there are myriad aspects of our personalities, and we can change. We can change everything about our behaviors.

I really do think that people with Asperger’s either have to have the autistic behaviors extremely, or they don’t have it, and are misdiagnosed. In that case, I only had slight difficulties, but they were merely separate disorders such as OCD and ADD. I also developed slightly differently, and it took me a little longer to learn certain things, but once I learned it, I mastered it. I was a perfectionist, and I mastered everything I focused on. I was also multi-faceted in terms of my abilities, and also very musically-inclined, and extremely athletic, with excellent coordination (which does not comply with autistic spectrum disorders, as many of these people have dyspraxia, and have poor motor coordination). I also have excellent social skills, and the problems which I had after I was initially diagnosed with AS were psychosomatic. After being diagnosed, I read about it, and I started developing poor recognition of social boundaries and OCD behaviors which I hadn’t had before the diagnosis. And I unlearned these behaviors once I discovered I was misdiagnosed. So the human mind is fluid, and you can change your behaviors. YOU CAN CHANGE.

My contention is that I really do think that Asperger’s Syndrome is really a composite of several different disdorders, and therefore really isn’t a disorder. And people can unlearn it; they just have to work on it. So I wish all of you the best of luck — remember, YOU CAN DO IT!! And I am here for you (:

Most Sincerely,

Lauren Farmer

— added by Anonymous on Wednesday, August 27, 2008 at 9:43 pm

A composition of disorders? My ass! I know it comes along with different disorders, but dont lie to yourself becuz it is a disorder and you CANNOT cure it and grow out of it, you just learn to HIDE it.

— added by Bhairav on Sunday, September 7, 2008 at 1:23 pm

The list is a load of rubbish and has been misinterpreted. The original list was of famous people who had displayed traits related to the Autistic Spectrum. Not people who had been diagnosed Autistic or Aspergers. But these traits can also appear in perfectly normal people. Autism wasn’t even recognised before the twentieth century so there’s absolutely no way we can tell about anyone before then. Like Beethoven. We can only speculate. Woody Allen is not Autistic in any way shape or form. He has neuroses. That is not autism and he has been put on the list because he differs from the norm and because of a profound misunderstanding of what the author is talking about. In short, it’s complete bollocks.

— added by Caractacus on Thursday, September 11, 2008 at 4:59 pm

I certainly think that AS is a condition which is being overdiagnosed, and I also think that it is one that popular media don’t really understand. I mean, it’s portrayed as being such a Rain Man-stereotype, when it isn’t. I was honestly misdiagnosed with it when I was 16, and it can easily be outgrown. You can really change certain patterns and characteristics of your mind, and adapt to the world. In fact, as a researcher, I’ve studied people who were misdiagnosed with the condition, as I was, and happened to have behavioral characteristics similar to those associated with AS, but didn’t have the cognitive idiosyncrasies associated with autism. So I think that in this case, what was thought to be AS was actually just people going through an awkward stage, and a lot of these characteristics they later outgrew. The same thing occurred with me; I eventually outgrew the characteristics. So in instances like these, it is a strictly behavioral manifestation. Therefore, if AS is a strictly behavioral manifestation, and lacks the cognitive aspects of autism, it is probably a misdiagnosis. In either case, even if it is HFA, it can be outgrown. I have studied cases in which a 2-year old kid was diagnosed as severely-autistic was observed on the playground talking, laughing, playing on the monkey bars, and interacting with other kids. He even came to his mother when his mother called him. This observation had occurred when he was 6, and he had outgrown all the characteristics which they had attributed to ‘autism’ in a four-year period. So a lot of these things can be outgrown. Even if you have HFA or AS, you learn to adjust overtime – even the most lower-functioning autistics can take adaptive measures and outgrow such characteristics. So it can be outgrown.

— added by jeholsavat02 on Monday, September 29, 2008 at 2:18 pm

I have Asperger Syndrome, and there is something very definite about Keanu Reeves that I can relate to, and seems autistic to me. Not in his acting, but in his interviews – the way he doesn’t look into people’s eyes, the monotone voice, and some of his repetitive movements, and how uncomfortable he is if he doesn’t know what’s coming. And how he seems to be concentrating on what is in his head and he sometimes misses what is being said. Not all autistic people are geniuses like Mozart – in fact those type make up a very small minority.

As for what others are saying about Aspergers, there are differences in the brain, when it comes to processing. There are disruptions between top down and bottom up processing, which have been shown on brain scans in research, and this is definitely something I can relate to. But as one gets older, of course one can learn strategies to deal with differences, and can learn more to pass as ‘normal’ if that is what one wants.

It is diagnosed more because there is more understanding about it now. It used to be more that such people were simply considered eccentrics. Now it is understood that there are specific differences in the brain and these can cause difficulties in a world where people’s brains are predominantly not like that, and the majority rules. And of course, for children, a diagnosis means they can get extra support in school, which helps the teachers out if a kid is not conforming to the norm, so that is often why a diagnosis is sought.

— added by Anonymous on Sunday, November 9, 2008 at 3:44 am

No form of autism is due to behavior problems. If there are behavior problems, they are often due to a genuine neurological difference. One does not outgrow it, merely learn to work around the condition. Whether or not folks like Woody Allen, Keanu Reeves (who are both suspected by many clinicians but not officially “out” with a diagnosis) or Steven Spielberg, Daryl Hannah, Bill Gates, Dan Akroyd ( all who are out with their diagnoses)are successful does not mean they don’t have a form of autism. As a fan of Keanu’s I see lots of signs, such as the fleeting eye contact, wearing the same clothes over and over which are not exactly fashionable, collecting the same bikes, reciting long lines of Shakespeare at random, and even disappearing momentarily at premieres to compose himself after dealing with the noise and lights flashing- but that doesn’t mean he has autism or AS. Whether any celebrity chooses to make their health conditions known is their business and one of the things I like about him is the tendency to not discuss his private life. Alot of NT celebs would be far more interesting if they followed suit.

— added by Anonymous on Monday, March 2, 2009 at 3:59 pm

Gay, Jewish, Autistic. Nice to see people cementing the three worst things that can happen to people. Speaking as someone who qualifies for two, namely here, an Aspie, I wanna know: what about all the people like me who don’t want to give up on themselves? I love hearing about creative successful people who survived in spite of it all, even if they eventually cut their ears off (I am also severely bipolar, Van Gogh’s only logical diagnosis; if you lived that way too, you’d know it when you see it. This in myself I call comorbidity.)
The system won’t help me anyway. Where I live, (I don’t know how far this expands) to qualify for benefits under autism (which clearly makes you stupid) you must have an IQ lower than 70. I do not. Guess I’m screwed. I have lived through this pill generation, just recently in highschool, and I saw insufferable childishness and manipulation excused under Bipolar Disorder, which, if anyone still remembers, often costs people their lives. In the real world I rock rhythmically in my chair or standing and cannot stop, no matter what they threaten me with. Life is fun. I have to go on dates this way. A few select forgive me for it. I hang on to them. Otherwise, all is ostricization. But I (somewhat compulsively) study famous cases that did things that awe me. The world will never forgive me for being born different, I need those high profile cases, you know I don’t find many in life, to keep me inspired, before I start to buy the idea that I am crazy and retarded. They are my hope, Van Gogh, Beethoven (BP), every romantic poet accounted for, and also my company, at least on that plain. Don’t get too defensive of actions that may make people understand what they’re seeing when they see it. It’ll only be exploited so far as everything else on earth.
That’s the position of someone who has it.
It is most definitely a disorder, a reality for many, and nothing relating whatever to a weak character or unmotivated person. Anyone who would imply that here or anywhere is, after all, a God damn blithering idiot.

— added by Anonymous on Sunday, March 15, 2009 at 3:48 am

Most practitioners who are familiar with the true spectrum of the Autism Spectrum agree that Keanu has ASD characteristics. Doesn’t mean that he is on the Spectrum, but one may have several characteristics and not be on the Spectrum. Identifying SUCCESSFUL people as role models is a good thing. The only true signs in his acting are his over-preparation for roles and meltdowns on set when things don’t go the way he planned. These meltdowns are documented, some on film, such as with behind the scenes footage while filming the Matrix Reloaded. He has been described as polite to a fault but also alarmingly honest. Both can be AS traits. His eye contact has been observed to be quite fleeting at times as well as very intense- both AS characteristics. Other people have commented on other characteristics.
What’s the freaking big deal, though? AS has always been around but only recently identified as a diagnosis. It doesn’t mean someone isn’t going to be successful. And it isn’t a freaking behavioral problem, it’s a neurological difference. Which one cannot simply OUTGROW, but which one can compensate for with proper treatment.

— added by Anonymous on Tuesday, May 26, 2009 at 3:30 am

I don't know about Autism as a whole, but aspergers is a label that is quickly given to any children who may just be a little eccentric or perhaps had bad parenting and never learned social skills. I know many people who actually have aspergers. I also knew people who were diagnosed with aspergers but turned out to be a case of DID and bipolar. I have also met sociopaths who go around claiming to have aspergers. All in all I think some Docs are just telling the parents what they think they want to hear in many cases. I have also heard that misdiagnoses is decreasing as doctors are becoming better at recognizing aspergers. I would say get the right doctor, and don't demand a diagnosis or shop for more opinions if you don't like the fisrt one. A label such as aspergers (or any other dissabillity) can harm a child emotionally and socially , especially if they are being mislabeled. Now all that aside I would like to remind people that Psychiatry and psychology are both largly based off of "theory" about the brain rather than cold hard facts. I also want to say please go easy on your kids, if the first doctor says he or she is alright, please don't drag them to other doctors for another opinion and more testing, they will end up hating you for it.

— added by Anonymous on Sunday, July 12, 2009 at 6:10 pm

Hi,

I was just recently diagnosed with Asperger's, but the fact that I was an outcast, a failure in integration and a flop at all forms of social conformity was well established by then. My life never had a guiding hand, my difficulties never had a name. I wish that people had tried to pay some attention to the problems people like me were having when I was a child. Perhaps I would have been able to find a way to deal with people and living in society and found a way to successfully exist in this world.
These days, I have a name for my illness, but nothing else. I am 33 and considered a write off.

— added by Anonymous on Thursday, November 12, 2009 at 1:32 pm

Lauren writes:
"it is much harder for those who are more sever[e]ly affected to excoriate these behaviors … "

To "excoriate" means — if this Aspie can trust a dictionary —

"1. To tear or wear off the skin of; abrade. See Synonyms at chafe.
2. To censure strongly; denounce: an editorial that excoriated the administration for its inaction."

Did you really have that in mind, Lauren?

— added by KateGladstone on Tuesday, December 8, 2009 at 8:49 pm

aspergers is probablly overdiagnosed. the diagnostic criteria has changed to include more people since hans asperger described it. now it describes anyone with autistic traits and todays defination is pretty much pdd-nos. I have been diagnosed with aspergers myself and i think some of the symptoms can be learned to improve such as learning better social skills but some things are always there. i have learned to socialize better over the years but I still do not understand other people. I think the most simple difenation of autism is being born without instincts. most people are born with natural instincts. they have done studies to show that babys that do not have the instincts that other babys do are more likely to be later diagnosed with an autism spectrum disorder.

— added by carl on Monday, October 25, 2010 at 6:21 am

In many primitive, egalitarian tribes there are no mental disorders. Why?

Because mental disorders aren’t just the result of a difference in the brain, it’s that brain’s interaction with society.

In societies where everyone is accepted and everyone is encouraged to follow their interests and these interests are put to good use for everyone you don’t have “mental disorders” because you don’t have the phenomenon of alienation.

Some aspects of a given disorder would be there but would not be problematic even without alienation, other aspects would not exist at all, and many traits would have a completely different expression in a different time and place that does have alienation but where this is manifested differently.

I bet many of the first rulers as well as the lowliest slaves were on the autistic spectrum. The former had strong interests related to gaining power, the latter had strong interests that according to the powerful were less valueable than theirs. What ultimately decided who was on top or on bottom? The fist. As a result as hierarchical societies first emerged you would likely see the rulers claim to rule based upon their status as a good hunter or great warrior since they would be more physically powerful compared to someone who was a good herbalist or good at sowing seeds.

If you think about it Asperger’s can easily just be seen as a personality type:

Routines/Special Interests=Bit of an Addictive Personality, Strong Passion
Bad Social Skills=Weird, Tactless, Independent-Minded(Social skills are automatic for neurotypicals so they often don’t question social norms or are even aware of them on a conscious level. When Asperger’s people learn social norms it’s more often conscious. The same “empathizing” ability that picks up and imitates things from social situations is also going to “empathize” better with newscasters, talking heads, lying politicians, cult leaders. We’re more likely to analyze it and draw their own conclusions.)
Resistance to Change=Contemplative, Critical, Stubborn

You put it that way and sure the individual is a little flawed but it doesn’t sound that bad and in some ways meritorious.

If Asperger’s was in the majority Neurotypicals would be said to have a disorder involving an excessive tendancy to “herd mentality” and indeed there are some very social people who are also very naive because of too much of a tendancy to follow the crowd. We can be naive as far as not picking up people’s intentions but we’re stubborn when it comes to our own views and opinions(not that we’re not open-minded you just have to present a rational, convincing argument, we don’t usually change our minds just to impress people).

And both can help each other. A neurotypical might point out that an Aspie missed some nonverbal cue that reveals ill intentions. An Aspie might notice that some popular thing a neurotypical is doing is ridiculous and with patient reasoning save the neurotypical from making a terrible mistake.

We all have our own strengths and weaknesses. There is no such thing as normal. The increasing diagnosis is related to society trying to enforce conformity. We should be looking for a cure to alienation, not natural human difference.

— added by AspieAgainstAlienation on Wednesday, December 8, 2010 at 5:10 am

[…] due: Senator, “Is Autism the New Gay?” Brown, “Intro” and “Emily Dickinson” […]

“Stephen Spielberg and Dan Akroyd both have “outed” themselves. I think Spielberg is Jewish, I don’t think either are gay. They both have state that they havve Asperger’s.”

Not true – Spielberg has never said he has Asperger’s. Just another internet rumor which continues to be spread by gullible people who believe what they want to believe.

— added by sue on Tuesday, December 13, 2011 at 12:56 am

What is never discussed is how society, social trends and stereotypes influence the way in which we view autism. It seems laughable the way people monitor for signs of autism, sometimes relying on no more than first impressions and appearances. Look at the people on these “autistic celebs” lists, for instance. How did they get in there? Well, let’s see… Steve Jobs was a computer geek, had glasses and was particular about things like how his house was furnished, so clearly he was autistic (as opposed to just having bad eyesight and being a perfectionist). Marilyn Monroe (yes, even she is listed!) looks kind of fay and confused in some of her scenes, so clearly she was autistic (as opposed to being a Hollywood bombshell with a penchant for prescription tranquilizers). Keanu Reeves? Can barely change facial expression, ergo, clearly autistic (as opposed to just a bad actor). Woody Allen? Nerdy and has big glasses, so yeah, clearly autistic (as opposed to just being a nerd with bad eyesight). Do you see how the whole category is disappearing into its own inflatedness? Autism has become such a catch-all that it is being “read” from passing facial expressions, dress sense and taste in music. I have been told I am “on the spectrum” because I read a book on the sinking of the ship Titanic. I read a book, one book, seven years ago, and that somehow qualifies me as autistic. A diagnosis can’t get any more meaningless than that!

— added by Jon on Monday, July 23, 2012 at 4:07 pm

Interesting thoughts here- your blog and the other commenters! A lot nicer place to exchange ideas and opinions than I have been to in the recent past! There seems to be a “radical autism etc” movement out there who want to have their own opinions adopted by everyone, without a discussion! Whenever I try to get anyone to explain the radical autism/neurodiversity perspective I get bawled out as some sort of evil nazi and pathologically “bad” person! In real life I’m a past researcher in the autism spectrum (the whole thing from “barely tolerable out of a locked facility” to international maths genius), ages 3 to 43,with many friends I met during the research plus quite a number of autistic friends and relatives (one Asperger’s cis-gay!). The funding nightmares seem to happen all over the world. In Australia, people are stuck with labels by the school system and by other (often different) labels by the medical profession and never the twain shall meet. Because everyone’s an individual, there are always people who miss out due to one or two traits deemed to be “outside the boundary”. I’ve cried with so many parents, though not many teachers over the years and wonder if health systems anywhere are getting any closer to delivering assistance to the ones who truly need it vs. to the vocal middle class who won’t shut up! Currently the “radical autistic” crowd hasn’t really taken off in Australia, but it seems to be all over the USA and UK, via the internet. I’m sure it’s great for similar people to get together to share their joys and woes, but I wish they weren’t so anti the so-called “neurotypical” among us! What do you think?

— added by Murfomurf on Thursday, July 25, 2013 at 9:26 am

I do believe Asperger’s Syndrome is often misdiagnosed because Asperger’s Syndrome is a hard disorder to diagnose. I don’t believe Asperger’s is a fake disorder; I believe AS is a real disorder. Asperger’s a hidden disability that’s not an obvious disability like ADHD (in some cases), Tourette’s Syndrome, Cerebral Palsy, being blind, beind deaf (in some cases), being in a wheelchair, having speech problems, etc. AS can be hard to diagnose because a lot of non disabled people have Asperger traits. Everyone misinterprets sarcasm at times. People with AS often misinterpret sarcasm to the extreme. Everyone takes things literally at times. People with Asperger’s often take things literally to the extreme. Everyone unintentionally makes social mistakes at times, everyone unintentionally does things socially inappropriately at times, everyone unintentionally misinterprets nonverbal social cues, etc. People with AS often do those things to the extreme. A lot of non disabled people are very routine oriented. People with AS are often routine oriented to the extreme. A lot of non disabled people have difficulty socializing with other people. A lot of non disabled people might be sensitive to certain sounds, tastes, lights, textures, etc, but with people with AS, it’s being sensitive to those things to the extreme.

The definition of a disability is when you’re challenged and impaired in ways non disabled people aren’t. If you have several AS traits and those several AS traits challenge and impair in ways non disabled people aren’t, you have the disability known as AS. If you have several AS traits and those several AS traits challenge and impair your life, you technically don’t have Asperger’s Syndrome. I don’t believe Chelsea from That’s so Raven has Asperger’s Syndrome. Even though Chelsea from That’s so Raven misinterprets sarcasm to the extreme and takes things literally to the extreme, I don’t believe she has Asperger’s Syndrome because taking things literally to the extreme is the only AS trait she has. Chelsea doesn’t have several AS traits, which is why she doesn’t have AS. Taking things literally to the extreme is the only AS trait that challenges Chelsea. There’s a strong correlation (relationship)between AS and being a nerd. Not everyone that’s a nerd has AS, and not everyone with AS is a nerd, but AS and being a nerd are strongly related. On the Big Bang Theory, Leonard, Howard and Rajesh don’t seem to have AS; they just seem like nerds. I strongly believe Sheldon Cooper on the Big Bang Theory has AS because he has a lot of AS traits and those traits challenge him in life. Steve Urkel and Marcie from the Peanuts Gang don’t seem like people with Asperger’s; they just seem like nerds. Famous people believed to have AS are Charles Schulz, Bob Dylan, Woody Allen, Al Gore, Albert Einstein, Darryl Hannah and Robin Williams.

— added by B.J. on Monday, August 19, 2013 at 3:12 pm

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