Asperger's Syndrome: A Special Report (Parts One and Two)

Asperger's Syndrome: A Special Report (Part Two of Two)

In one of our most important programs to date, this second of a two-part special report on Asperger’s Syndrome offers a groundbreaking and extraordinary look at Asperger's in children and young adults. We meet Anders, a 17-year-old boy with Asperger’s, and his mother Carol, who talks about her surprise when Anders suddenly began speaking like a professor and using four-syllable words.  We also speak with film producer Robert Lawrence, about his forthcoming film, Mozart and the Whale, starring Josh Hartnett and co-written by "Rain Man" screenwriter Ron Bass, which tells the tale of Donald and Isabelle, two "Aspies in love." Dr. Stanley Greenspan, founder of the DIR/Floortime approach, explains how children with autistic disorders can significantly build their capacity for emotional understanding and interpersonal connections through intensive play. Dr. Richard Howlin, a psychologist who works with teens with Asperger's, talks about the special challenges it poses with family, school, peers and especially dating.  Finally, summing up the two-part series is commentator and visionary Howard Bloom, who reaches back to his childhood in Buffalo, and even further back to the dawn of man, to examine the lessons each of us can glean from our own handicaps and weaknesses.

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Asperger's Syndrome: A Special Report (Part One of Two)

“Let’s not use the word ‘cure’ if you don’t mind… When you talk about cure you imply that we’re broken. I don’t feel broken.” So says Liane Holliday Willey, a woman who not so long ago would have been described as a “victim” of Asperger’s Syndrome. It’s been more than 60 years since the Austrian doctor Hans Asperger identified the condition that bears his name, but it has only been in the past decade or so that we have begun to understand its broader implications. Asperger’s Syndrome may be a part of the autistic spectrum, but that doesn’t necessarily mean that an “Aspie” can’t function in the world.

In this, the first in a two-part special report on Asperger’s Syndrome, we hear from Dr. Simon Baron-Cohen, a researcher at Cambridge University, on recent advances in recognizing the condition. We meet Dr. Michael Fitzgerald of Trinity College, Dublin, Ireland, a child psychiatrist who’s made quite a stir diagnosing Asperger’s Syndrome among the dead. Then, in a panel discussion, three adults – Liane Holliday Willey, Stephen Shore, and Michael John Carley – talk about growing up as loners with Asperger’s. Now they celebrate their membership in the community of “Aspies.” Finally, in a commentary, Dr. Arthur Caplan, head of the Center for Bioethics at the University of Pennsylvania, asks, “If you could go back in time and stop the birth of the world’s most famous nerd, would you have done so?”

Comments

[Phil S.]

I'm an Aspie. I've been an Aspie for 47 years. I didn't know it until eleven months ago.

I've been certain all my life that there was something different, and 99% certain that somehow, there was some secret method of communication that everyone else casually used without even thinking about it, but to which I was completely blind - almost as though everyone in the world was secretly telepathic, except me. It was only last year, at the age of 46, that I was formally diagnosed and learned that I was right - there really IS a whole layer of communication that almost everyone else uses instinctively, but which I'm barely even aware of.

Being an Aspie is different, yes. That doesn't mean it's necessarily bad, true. But it doesn't mean it's all good either. Yes, there are people out there who say that Asperger's is wonderful, a gift that they wouldn't trade away. There's a word for that: "Denial."

It has good *aspects*, certainly. My memory for things like numbers can be astoundingly good. In the testing that finally exposed my Aspergers syndrome, I achieved the highest cognitive scores my specialist had ever seen in thirty years of neuropsychological testing. Like many Aspies, I can hyperfocus on a problem for days, even weeks, until I solve it, and sometimes I can solve complex problems with leaps of deduction I can't even figure out a way to explain to anyone else, because I can't find a way to break it down into chunks small enough for them to follow.

But at the same time, every conversation is a struggle for me. Technical conversation isn't as bad, because I can focus on the technical aspect, but social conversation verges on terrifying. I get tense and anxious, my heart races, it's a constant struggle to know when is the "right time" to say something. It's difficult enough that a lot of time, after a few abortive attempts, I'll just listen without trying to add anything, or give up, wander off and go find something else to do. I can only take it for just so long anyway, before I need to go away and find a quiet spot to decompress. And that's casual social conversation with nothing on the line. If there's an added factor, perhaps I'm attracted to someone and trying to figure out whether it's mutual, it's even worse. I spent most of my life alone, and most of the rest in bad relationships that I didn't know were bad, because I was oblivious to the signs, never knew when someone was flirting with me, didn't start to learn myself how to flirt back until I was nearly 30, never had any good relationships to measure the bad ones against, never had any baseline to know what was good and what was bad.

Aspies face other problems, too. Neurotypicals get mad at us because we never understand when we're expected to tell the "little white lies". Those awkward moments when someone asks a loaded question expecting a particular answer, and you're in deep trouble if you answer honestly, are like land mines to many Aspies, because it doesn't occur to us to answer any way *but* completely honestly. Why would anyone ask a question except to get the correct answer? Asking a question in order to be told what you want to hear, true or not, just doesn't make sense.

Liane Willey says she doesn't know any Aspies who feel they need to be cured. Maybe she just doesn't know enough Aspies. Not all Aspies are alike; not all of us have the same experience or function in the same ways. It sounds like Liane's Asperger's is pretty easy for her to live with. I'm happy for her, but mine isn't. If there was a "cure" that would enable me to function socially like an average neurotypical, give me the ability to recognize when someone's flirting with me, enable me to talk to people I don't already know well or to take part in a conversation without feeling like a trapped animal, allow me to flirt with a pretty girl without being terrified I'm going to screw up (and without inevitably screwing it up because I miss the non-verbal cues and put a foot wrong), I'd take it.

[Angelika D.]

How can anyone who calls normal people "neurotypicals" expect us to be attracted to them? The writer above, and the interviewee who said on the radio show "Sorry you neurotypicals don't have it like we do," must be intelligent enough to realize that preventing others from calling you names does not usually come from calling the people you are addressing by an epithet first.

I would encourage Asperger's Syndrome people not to use the term unless they can do so without seeming to cast an ASPERsion--doubtful that they could do that if they speak in monotones (although not all Asperger's people do, I realize).

Another point of semantics (does that mean I have Asperger's too? No, because Asperger's people do not have a corner on vocabulary or definitions or grammar.) A person who called himself an "aspy" got away with it with a friend of mine for weeks because she thought he meant having to do with liking snakes. The "y" spelling seems to allow the condition to slip by unrecognized.

Why not use a fuller form of the term, such as "I have Asperger's Syndrome," and deal with the matter up front? Some people would still want to be friends with them. Wouldn't bringing up the matter frankly at the outset help forestall misunderstandings?

As to the size of the head, of the people I have known, the one with the largest head had the most empathy and surely no Asperger's, whereas the one with the smallest head was the most self-centered and noncompassionate. Of course my sample size was very small, but . . .

The social fears seem to be just an extreme version of what most men experience. If they would clue in "neurotypicals" to expect their gestures to be as useless as they would be with a blind person, if they would explain ahead of time, if they would even hand out lists of tendencies to people when they first meet them, it would let those "neurotypicals" who want to try to interact do so more effectively. Even "neurotypicals" often have misunderstandings and have to explain themselves.

Since people with Asperger's seem to be so linguistically gifted, I would urge them to explain themselves to others sooner instead of later, thereby preventing many misunderstandings and troubles . . . Maybe they would find many "neurotypicals" willing to make allowances and ask clarifying questions more readily if they did so.

[rana]

"Neurotypical" is not an epithet. It just means "neurologically typical" -- in other words: normal, typical, regular. It's not a bad thing, and it is not meant to be a bad thing. (I am frankly amazed somebody took offense! I am neurotypical, by the way.) People with Asperger's syndrome are therefore "atypical." Which, you must admit, sounds better than "abnormal," eh?

[mjw]

Most good, serious neurologists will tell you that AS is *vastly* over-diagnosed. It has become the fibromyalgia of personality disorders.

Just like climate change, AS is now a field that garners lots of money and attention, which virtually guarantees that it will attract "specialists" who down deep know next to nothing.

A prerequisite for a valid differential diagnosis would be a clinician with a solid foundation in psychodynamic psychiatry. Not a cognitive. Not a behaviourist. Somebody who can carefully pick their way through the family minefield that "just happens" to be co-morbid with AS in so many cases.

Then, and only then, can he/she make statements about neurological deficits in the child/adolescent that have any chance of being valid.

Although Bruno Bettelheim was in many ways laughably incompetent, his case history of "Joey" in "The Empty Fortress" should be required reading for all AS'ers and their doctors.

The above is not meant to minimize the suffering of patients. There are many reasons to consult a psychiatrist. There are many syndromes (like Schzoid Personality Disorder) that can, at first glance, look like AS. The fact that they are not AS does not mean that the patient is well. AS is a RARE syndrome which remained unrecognized for the simple reason that it is hard to find. Be leery of any and all professionals who claim to see it everywhere.

[anonymous]

Dear Drs. Kramer and Howland,

I listened to Part II of "The Infinite Mind"'s special on Asperger's syndrome at first, with interest; then, with consternation; and finally, with anger and disgust.

I am a 39-year-old woman who is very likely an undiagnosed sufferer of autistic-spectrum disorder. I wanted to hear some, any of my experiences reflected in the program. But to listen to the show, you'd think that Asperger's patients were not merely predominantly but exclusively male.

Oh, yes, the words "child/children" and "person/people" were used throughout, but it was telling, Dr. Kramer, that you once used the phrase "a boy with Asperger's" but *never" "a girl with Asperger's."

And, Dr. Howland, when you mentioned the dating problems of "Aspergian males, in particular...", I thought, "Oh, great, maybe he'll say something about the problems faced by women with ASDs" which in many ways are more daunting, because society puts greater pressure on females to be (a) empathetic, (b) identified by their romantic partners, and (c) "sexy."

But no. And then you added insult to injury by writing off the stalking of high school girls as, more or less, a mistake made by those with Asperger's. Um, given how many high school girls (and women) suffer violence and harassment both sexual and physical at the hands of "neurotypical" males, I think it's fair to say that the problem isn't an "Aspie" one it's a larger societal issue of male entitlement to women's bodies.

However, I don't expect either of you to "get" why I was so offended by that part of the program, or indeed to do much besides roll your eyes. (And I'm sure the male "Aspies" reading this will do the same.) More confirmation, in my view, that no matter how highly educated some men become, they continue to believe that male is the "default" of human existence, and us "females" are truly not fully human.

[Jeannette]

I have a cousin that has never been diagnosed but I believe he has Asperger's. He was doing Calculus at about 6 years, but couldn't understand why I didn't want to play the same game over and over and over again or hear him talk incessantly about science or math when we were children. He is now about 35 and has tried to commit suicide several times. He lives with his parents still because he just can't seem to live in the outside world on his own. Is there any connection between Asperger's and Depression? And is there any help that can be offered to him at this age? BTW, his parents feed into his Asperger's in that they encourage his descent into all things Math or Science related and don't try to pull him out of himself to interact with others.

[Mark Salowitz]

Wow,

I was listening this morning to part 2 of the series, and hearing Anders speak about his experiences was striking a serious chord with what I experienced growing up. Rather a straight-down-the-line checklist. I do have some questions I'd like to direct to the Doctors...

Is there any correlation between Aspergers and Tourettes? I 'came down' with TS at age 7 (in 1977), was misdiagnosed as petit mal epilepsy, successfully diagnosed as having tourettes in 1979 at age 9... but due to the serious physical stigma of having visible motor tics, I learned to pretty much 'hate' all the kids I was around.

Fast-forward a few years, I have the same social stigmas, incredibly high intelligence for my age (1320 SAT in the 7th grade, for example) and sit in on advanced programs.

By the time I got out of high school (1988) I pretty much had no use for... well, much of anyone but a few friends who could understand what I was talking about on any given day. I could go on.

As an adult, pretty much any field I get into I excel at... creative fields such as acting, improvisation, or technical things such as advanced unix administration.

So, can TS trigger AS, or vice versa, or are they separate with overlapping symptoms leading to potential misdiagnosis?

Please, I'm dying to know the answer to these questions. It's not every day you hear someone else say the same things you've said all your life..

Thanks,

Mark

[Patrick J. Conway]

Dear Anders,

I heard your comments about loving truth. I too have taken many hits for that passion. It is not a disease! If you would like to see the results of sixty-nine years of research on the subject, visit my website www.realists.org.

Patrick

[Rosie]

I am so grateful to learn about Asperger's so that I can better understand anyone who comes to my support group. This program was a very new, yet extremely informative for me. Thanks.
RS

[Sophia]

About a month ago, I was asked if my now 19 year-old son was ever diagnosed with Asperger's. The only exposure I ever knowingly had to someone labeled as such was the character of Jerry on Boston Legal, so I looked it up on the web. Much to my astonishment, my son seems to be firmly on the spectrum.

This week, he will begin treatment with the therapist I was referred to by the Orton Society originally to help my dyslexic son with his social awkwardness and inability to appropriately respond to non-verbal social cues. This is the person who asked if he was ever diagnosed with Asperger's and her experience with spectrum and other developmental disorders is pretty extensive, so now he’ll be properly diagnosed.

I love my son and wouldn't change anything about him, but to seriously consider the possibility of his being affected by this condition has been both heartbreaking and a relief. Heartbreaking in that I die a little bit every time he has a problem in social situations. He almost got killed 2 years ago when he was jumped by 7 kids because he was beginning to date a girl who was well acquainted with those hoodlums, and he was being chivalrous when they were becoming abusive to the girl and her sisters. Support for him came pouring in and with his broken jaw, he cried to me that before this happened, he thought that if he died, no one would care. On the other hand, it's partially a relief because now he can hopefully gain the tools he needs to bridge much of that gap. To be honest, this now explains alot about his father who I divorced well before my son was talking.

It was encouraging to hear this program about Asperger's and I was heartened to learn that there are many successes. It was also wonderful to hear about Dr. Stanley Greenspan's Floortime therapy approach for young children. My question is, how can this approach or something more than rote learning be geared toward adolescents and adults? How can my son benefit from this research? My son is my first of two gifts from God and the one who has challenged and taught me almost as much as being the child of a mother with paranoid schizophrenia, whose father who died when she/I was four. However, the more I learn and speak with people in the know, the more I realize how many more people are needed to help those who have conditions that are not blatantly obvious. Unlike those with physical disabilities, people with developmental or learning disabilities look normal and are alienated because they are not "normal." Hopefully as I also resume therapy, I can learn how to stop putting my whole life on hold because my son needs me, and to resume my dream of becoming an advocate for kids/people like him. In addition, maybe now that my son will begin therapy with someone who has more appropriate qualifications, he'll learn how to become his own advocate and become the huge success that since I was pregnant with him, I have always known he was born to be.

[Delia]

What a wonderful program! Thank you for producing it.
My ex-husband is classic Asperger's but refuses to get diagnosed. One of our children has been diagnosed. What an experience this has been. I should perhaps explain that he divorced me. He wanted to be married, have a family, etc. but couldn't handle the emotional needs of a wife and kids, so he bailed. Our child sees a psychologist and a language therapist regularly. I was surprised to hear the term "verbally gifted" on your show -- that has not been my experience at all. The AS people I'm familiar with are good at math, geography, memorization, anything "black and white". The nuances of language and communication frustrate them.
I highly recommend anyone with an AS child to follow Dr. Greenspan's floor time and play therapies. It was a big help to my child. We also treated the "symptoms" -- physical therapy for sensory integration dysfunction (very common with AS children) and language therapy for pragmatics and auditory processing problems. Also psychological help for self-esteem and anxiety issues. Keep them in a small, nurturing private school if possible.
There are some good books out there. One of my recent favorites is "Unwritten Rules of Social Relationships" by Temple Grandin and Sean Barron. Their experiences really show the differences in the AS spectrum.

[neil wilson]

I remember hearing a 2 part series on Asperger's Syndrome a few years ago and it seems like this was a rebroadcast of that show.

I was wondering if it were possible to put the date the show originally aired when doing a repeat.

It would really be helpful to me.

[meep]

1.I was surprised to hear the term "verbally gifted" on your show -- that has not been my experience at all. The AS people I'm familiar with are good at math, geography, memorization, anything "black and white". The nuances of language and communication frustrate them.

Actually, I am a woman with Asperger's with a master's degree in linguistics.I found others in both my undergraduate and graduate programs with various kinds of language difficulties. I think this is related to people,like aspies, wanting to systemitize and make a study of that which they do not understand to make sense of it. I stared at novels just to look at the shape and "texture" of the words from 8 months old and I scored off the charts in language ability. I love math but am quite bad at geography actually.

2 So, can TS trigger AS, or vice versa, or are they separate with overlapping symptoms leading to potential misdiagnosis?

Some people with AS have verbal stimming (repetitive behaviors to regulate the nervous system or some such) which might be interpreted as TS or the other way around, but I am not a professional just someone who likes to read about this stuff.

[meep]

1.I was surprised to hear the term "verbally gifted" on your show -- that has not been my experience at all. The AS people I'm familiar with are good at math, geography, memorization, anything "black and white". The nuances of language and communication frustrate them.

Actually, I am a woman with Asperger's with a master's degree in linguistics.I found others in both my undergraduate and graduate programs with various kinds of language difficulties. I think this is related to people,like aspies, wanting to systemitize and make a study of that which they do not understand to make sense of it. I stared at novels just to look at the shape and "texture" of the words from 8 months old and I scored off the charts in language ability. I love math but am quite bad at geography actually.

2 So, can TS trigger AS, or vice versa, or are they separate with overlapping symptoms leading to potential misdiagnosis?

Some people with AS have verbal stimming (repetitive behaviors to regulate the nervous system or some such) which might be interpreted as TS or the other way around, but I am not a professional just someone who likes to read about this stuff.

[johnnieboi]

I also had horrible experiences with Aspergers. If there was a cure I would take it immediately. AS has ruined so many opportunities for me, it's a reason why I never had a girlfriend nor did I have friends (not more than 1 or 2 friends in my lifetime - which is 25 years). Without this horrible affliction I would have a normal life.

[spunkykitty]

thx for this wonderful broadcast/article. i hv AS and an autoimmune disorder, doubly "special" that makes me. i m not a whizz with numbers, but i m an artist, musician & writer. i hv faithful friends from childhood, a loyal sibling who doesnt place expectations or rigid limitations upon me, but also my fair share of abuse. i m a mixture of deep sympathy and lack of empathy. i m in constant physical pain due to my autoimmune, but yet i hv little patience with pple who whine and moan abt their physical suffering. i love very deeply, my one repeated mistake in relationships has been being "too intense", so it isnt always true abt having little or no emotions, i guess we aspies know it is actually more a case of deeper feelings but not knowing how to 'package' it all in the same way as others. i hv been known to give to the point of inviting abuse in relationships, i m loyal and faithful to a fault. i hear see touch feel smell more than others, annoying and antagonizing pple, and causing me much grief. i write my thoughts a lot, prolifically, becos i m unable to spontaneously express myself in relating situations. hence i hv 3 blogs. i wld like to meet more pple with AS to share with. pls contact me if u wish to, dunno how this works but probably u can find me thru my blog by clicking on my name here. cheers and thx for this page again!

[Matt T]

Definately agree with alot of points you people have put across. Ive also written some blogs, it really does help to at least partially understand.

beastinblack.blogspot.com

[[email protected]]

I am a woman in my late 40's in love with a man of the same age with undiagnosed Asperger's Syndrome. I say 'undiagnosed' as it has not been confirmed by tests, but my partner has finally admitted that that anything he has ever heard or read about Asperger's Syndrome has resonated with him deeply and it would explain much of how his life has turned out. Sexuality and touch are very disturbing for him and he has virtually 'no sex drive'. As someone who is overflowing with love and affection for him, it is heartbreaking for me....He feels deeply for me too but cannot show this in the normal ways. He gets very upset when I cross his 'boundaries'...these are just the normal spontaneous hugs, caresses and kisses that men and women who love each other share. Sometimes I feel I give so much and it is so unreciprocated... or its just that I dont feel it's reciprocated......Does anyone identify with all of this? I wish I knew how to help him be in touch with his sexuality....or maybe he is not in touch as it just isn't there, nor ever will be : ( Not sure where to go with all of this....but my love is very strong inspite of it all!

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[dental health center]

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[teenage sexaholics]

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[Fußmatten]

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[Account Deleted]

You are truly doing a great job by educating the people about Asperger. It’s really being helpful to people to handle things in a better way without hesitating. Now it’s clear that a person with Asperger syndrome can function in this world and lead a life of his own.