Saturday, February 23, 2008

Asperger's as illness - one psychologist's view

This afternoon, I spoke to a psychologist who had a surprising interpretation of Asperger’s and the DSM Guide. I will paraphrase what he said:

You, John, manifest many signs of Asperger’s as listed in the DSM. You have trouble with eye contact, you exhibit some repetitive movements, you fixate on special interests. You obviously meet many of the criteria.

When you were a kid, reading your description, I’d say you had major social issues and you were not able to function in school. Reviewing this data I can say, as a kid, that you met the criteria for Asperger’s as that illness is described in the DSM.


Excuse me? Illness?

Yes, he said. Illness. The DSM is a manual of disorders. Disorder is another word for illness. Now, when I look at you today, I’d say you are cured of Asperger’s. You are obviously successful in your work. You have a wife and a kid, and you talk about having friends. Given those improvements, you no longer meet the criteria in the DSM for Asperger’s. You did as a kid, but now you’re cured.

Really?

So let’s compare that to a drunk and AA. Say a fellow had terrible trouble with liquor, and almost drank himself to death but then joined AA and kicked the bottle. Twenty years later, he still goes to meetings. The meetings keep him connected, he says, and many people in the program find his continued sobriety an inspiration.

But if I’m hearing you right, he’s not an alcoholic anymore because he’s not drinking and he’s not drunk. Is that what you’re saying?

Yes, that’s right. He’s cured.

Well, that’s gonna be news to millions of people in AA programs all over the world, I thought. And my Asperger’s is cured too! What to make of that?

I felt like a scientist feels when he runs into a creationist in the lab.

Asperger’s is a way of being. People like me are the way we are because our brains are different. A course of therapy is not going to change the structure of my brain cells. There is no smoking gun in my past that made me Aspergian. It’s not a result of childhood abandonment, molestation by my uncle, or beatings in school. I was born this way.

If you accept that premise – that Asperger’s results from brain differences we are born with – then there is no cure via psychology. Once an Aspergian, always an Aspergian. But there is moderation of symptoms and learning to cope. I’ve said that right along.

The words “disease” and “illness” suggest a condition that one catches. If you catch something, you should be able to un-catch it, or get cured. I never thought of Asperger’s – which is how I am at a very basic level – as a curable condition and I certainly don’t see it as a disease.

What do you make of that thinking? And what is the role of psychology in dealing with Aspergians? For me, the "cure" has come from understanding how my thinking differs from nypical people's thinking. I could then change my behavior to look more nypical myself. My underlying thought processed never changed.

That's a very different process than the typical therapy session.

Would conventional therapy have helped me reach that goal?

35 comments:

Peter Weiss said...

"Conventional Therapy" would have to first be defined. But I'd agree than many common types of mental health therapy may have not led you down your path.

Good therapy (in my opinion) increases awareness of ourselves, then helps us to make decisions on how to be in the world based on this increased awareness. (which sounds a lot like the process you went through)

Aspergians aren't unique in needing to figure out why they think/act/feel the way they do - all humans are faced with the same questions at some point. What is clearly a common struggle with folks with Asperger's is that the latter half of this idea of therapy (what to do about this awareness) - is complicated by social struggles. So the, "How do I BE in the world?" question is one that possibly takes more time to find answers that work. And the therapist must be able to connect and understand at some level the Aspergian filters than make social interaction difficult.

admin said...

I think your psychologist friend can be helped but only if he achieves greater insight. It is highly likely that high up on the list of differential diagnoses he suffers from a little recognized malady known as NT. NT, or Neurotypical syndrome, is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity.

It is a serious condition and should not be ignored because it can just get worse. It may take him many years of therapy before he can even acknowledge he has a problem. With love and patience he may do well. If all else fails he should undergo aggressive behavioral therapy and sedating medications.

ChristineEldin said...

That psychologist is offensive. Maybe he needs therapy to learn better social manners.

Michelle O'Neil said...

The psychologists we have seen have been more harmful to my daughter than helpful.

Autism is not a mental illness.

Roy Gage said...

Hi John. I understand what your saying, and agree with you. I will point out though that for years we have been told that alcoholism is a disease.

Maybe predisposed to it would be a better term?

momof3feistykids said...

Our society is falling into a trap. As we make baby steps toward better understanding the neurological basis of certain differences, that gives the "experts" carte blanche to lump everything -- including Asperger's -- under the disease model. Also, this psychologist is using some really poor logic. It's a diease *because* it's in the DSM??? And I suppose if asked why it's in the DSM, he'd say "because it's a disease." That argument goes in a circle and says nothing.

My daughter was diagnosed with Aspergers in 2002. After considering her "symptoms," and my own history, I realized I am Aspergian, too. (Yes, I adopted that term after reading your book. *So* much better than "Aspie.") I'm guessing I am among thousands of parents who have come by an unofficial diagnosis this way.

I have a family, I work, and I have a "normal" life. It would never occur to me to think of myself as "cured." Just more comfortably adapted to myself and to the world. A challenging task for all of us, "neurotypicals" included.

http://tribeofautodidacts.homeschooljournal.net/

Erica said...

I think classifying Asperger's as an illness that can be cured is very misleading and no professional psychologist should do this. Not that giving hope is a bad thing, but you were very lucky in that you were able to find ways to use your gifts and protect your struggles/weaknesses. I don't think you are ever completely cured of Asperger's or Autism, as it's technically a brain issue, that would be rather impossible.

Having worked with Autistic's and Aspergian's I have been able to see improvements when outlets were met that helped to keep them level, but to say cured is a long stretch.

To say that you are cured is to imply that something was wrong with you before. Aspergian's aren't wrong, just different.

To me, throwing around "cured" when dealing with anyone on the spectrum is just unprofessional.

Rock on John! I am inspired by you and your brother.

Polly Kahl said...

Scary.

Yes, your "cure" has come from being able to mimic "normal" behaviors, but it's also come from your deciding to change or modify your behaviors to those that are more likely to win friends and influence people. Like an alcoholic is always an alcoholic even when sober, you'll always be an Aspergian. And like an alcoholic, you have nothing to be ashamed of or feel stigmatized about. (I know you know this. I'm just sayin'.)

Please allow me to briefly go into teaching mode. Alcoholism is considered a disease because it's progressive and incurable. Asperger's is considered a syndrome because it involves a cluster of symptoms. Modify those symptoms and you haven't overcome the syndrome, but if you apply yourself you might be able to run a successful business, build a beautiful home and family, and write a bestselling book. This is why you, John, are an inspiration to millions.

MomOf3 is right about the DSM. The DSM-IV is published by the American Psychiatric Association and it is their opinion only. It covers "disorders" that interfere with human functioning on some level, including diseases, mental illnesses, addictions, and syndromes. They are not all illnesses by any means. Psychiatrists are only a small percentage of all treatment professionals and are trained as medical doctors who specialize in pharmacology, not as mental health counselors. The DSM assists them in determining which medications to prescribe. The DSM also assists some non-psychiatrists in identifying conditions so that we can attach the most effective non-medicinal treatments to them. It's not the be-all and end-all.

I'm really glad you're speaking at the APA conference. The psychologists in attendance will benefit from your being there.

Polly Kahl said...

This post has been on my mind so I'm adding a p.s. There's no answer to this question "Would conventional therapy have helped me reach that goal?" because there's no such thing as conventional therapy. Therapists can't be pigeonholed any more than any other group can. There are many approaches and each therapist then uses each approach in his/her own way. The best thing is to find a therapist who fits for you as an individual to create an effective team on your behalf.

sex scenes at starbucks said...

How sad. I suppose it comes from "labelism" and "diseasism" that seems to be sweeping the country. (A drug for everything--even "conditions" and "diseases" we've never heard of!) I saw it all the time in the schools.

I remember a teacher in preschool once wanted to label my son as having sensory disorder. I told them "He doesn't have sensory disorder. He's got four-year-old-itis." I mean for crissakes, anyone who's spent time in the company of four year old boys knows they're all weird (I used to teach preschool, and I say this with love and fondness).

Disease, indeed. That just served to make the psychologist comfortable and put Aspergers in a realm that he could understand and deal with. Sheesh.

kevathens said...
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kevathens said...
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kevathens said...

I guess it's true there is no cure. All it takes is practice, practice, practice. I say that literally, not sarcastically: I'm still practicing, and I'm "curing" myself (but yes I'm getting help from people who have a fresh idea of what autism is).

Dawn Colclasure said...

We live in a world of labels and brandings. It's sad, really. What's worse is that, if we are not like everybody else, society thinks there's something wrong with us and we need to be "fixed" or we need to be "cured." I say this as a deaf person who has seen people try to "fix" or "cure" my deafness with hearing aids, implants and other devices. It's frustrating, but we cannot allow this ignorance to throw us off course. It would seem that you know a little bit more about Asperger's than this psychologist. You KNOW you do't need a cure; Asperger's is not a disease or illness to be cured. All you seek is greater insight, which you obviously seem to have more of than someone with letters behind their name.

Kanani said...

Illness is a loaded word, yet for a lot of people the symptoms are exactly that.

I'm not sure the context under which the shrink was talking, but perhaps as a clinician who gets lots of people who come for him for "solutions" he might look at these as a "cure." And cures are what one provides for an illness.

I think of illness when someone isn't coping well, like if they have such high anxiety they have full blown panic attacks, or if they respond violently, or have self-injurious behaviors, or they're so depressed they can't get up.

Cutting is a symptom of a mental illness, suicide is another.
I'm just not so quick to dismiss the issue of illness, because for many there is a way to cope. Anti depressants, therapy, understanding what it is that ails them. These are steps, I think.

I think while Aspergers is a way of being, that you're very lucky you haven't suffered what some of the people I've met have been through.

anonymoose said...

Oh good, maybe next they'll come up with a cure for being tall, and blue eyes -- maybe they can cure that too!

JoVE said...

I'm a sociologist. We tend to read things like the DSM as socio-cultural texts. There are lots of things that used to be in the DSM that are no longer (homosexuality comes to mind). Psychologists thought of those things as diseases. People argued with them as you are doing about this. They changed their mind and took it out. Some psychologists still think homosexuality is a disease and will offer therapy to "cure" it, but they no longer have the DSM to support their thinking.

Keep fighting. Keep raising these issues. History shows that they can and do change their minds and take stuff out of the DSM.

And I love the commentor who talks about Neurotypical disorder. WTF is "typical" anyway.

The Anti-Wife said...

You are not your condition. You are John Elder Robison. Aspergers is simply a condition you have, but what you are is what makes you special - not what conditions you have.

piglet said...

i love the way you used AA as a comparison.

as a recovering alcoholic who is active in meetings, i've been asked over the years why i still go to meetings. some even offer that i could probably drink now and i'd be ok. yeah, right for about a day.

usually i don't try to explain b/c it's a hard concept to understand.

i just keep doing my thing knowing that my disease will always be a part of who i am. i will never be "cured" and frankly, i don't want to be. being sober in AA has given me a life i never believed possible.

people are silly.

Jill Elaine Hughes said...

The DSM also used to call homosexuality a "disease"----as recently as the late 70s, in fact. We of course know better now.

Or do we?

I know first-hand the kind of destruction that psychiatry and psychology can wreak upon people's lives if it is not properly administered, and this is a perfect example. Asperger's is not a "disease" any more than homosexuality, or shyness, or being creative is. Unfortunately, the psychobabble industry has gotten so completely out of control that we have a whole generation of kids being needlessly over-medicated and pulled out of mainstream education, just because they are "different."

I was very pleased this week when the New England Journal of Medicine published the results of clinical studies that the pharmaceutical industry has long suppressed---that antidepressants don't work any better than sugar-pill placebos. Maybe when more of these kinds of studies are done, so much of the corrupted psychiatry and psychology industry will be exposed for what it is---big business that makes money off of labeling people as "ill" when they are not.

Connor Glynn said...

that seems very strange that a psychologist would say asperger's is an illness.
"different doesnt mean dammaged."

Connor Glynn said...

also, i enjoy knowing very much about a certain subject like palentology or computers and if that was taken away from me i would be very upset

Lisa said...

I agree with your analogy about alcoholism. There are many, many -- now I'm afraid to pick a term -- conditions? that require an awareness and then a lifelong approach to management so that people can live happy, satisfying lives, but there is always a challenge. I come from a long line of alcoholics and most ended up in recovery eventually. Some didn't and one died from it. There's no such thing as an ex-alcoholic.

Jerry Waxler said...

Your experience proves that people can grow in amazing ways.

anonymoose said...

If we abandon the disease model in favour of a difference model, we quickly see that comparing AS/NT is comparing a LR Defender to a Jag X12. The comparision is flawed.

anonymoose said...

PS - 'Conventional Therapy' can help huge -- thing ESL training for immigrants. We map new language, we don't correct an incorrect old one.

Don't Mess With Her said...

Checked your book out of the library weeks ago. Finally was able to begin reading it and had to recheck it. My schedule has gone out the window as I cannot put it down! I told a friend about it. Her 11 year old was diagnosed as Aspergian last year. She just told me they are able to go to the Monarch School in Houston on March 4 to meet you. Wish I could come. I provide what is called "SHL" (Supported Home Living) for an Autistic 14 year old boy. I quit using the term "with autism" some time ago. I agree with the idea of increasing his awareness of himself, teaching him how he learns, and helping him to reach his goals by learning how to "act" around other people. One of my sons commented about how odd it would be if Isaac "got hit on the head and started acting like the rest of us." To my son, that would be a sad day.

Livinia Redlips said...

How do you feel about children who have been disgnosed with Asperger's being told of their disorder? Do you think it would be beneficial, or a hindrance?

My ten year old son was recently disgnosed with mild and high functioning Asperger's (along with two learning disabilities), already knows he's a bit different from his classmates (attends occupational therapy and tutoring), and I'm not sure giving him the 'words' as to why he's different would be beneficial for him at this age.

What do you think?
Other's opinions?

Thank you.

TerryB said...

As someone who was born with more than one, I prefer the term "congenital issue" to birth defect. It's something you're born with and as you said, not something you get or can get cured.

If an alcoholic in recovery was to start drinking again it would (most likely) be uncontrollable. If you were to forget that your thought processes were different than other peoples' and assume everyone you spoke to thought the same way and saw the world the same way as you did, then you would exhibit more outward signs-as you did when you were younger.

As far as conventional therapy--no! I've been laboring under the assumption that I have a social anxiety disorder due to the amount of teasing I took as a child and in spite of all the signs (you are my TR!) several therapists missed the correct diagnosis completely. Even with someone familiar with Aspergers, unless they have it themselves or can be available 24/7 to answer questions on social situations, I don't think they would be much good. They would be good for the basic fact of finding out that you have a condition and living with it (generic condition) and perhaps any depression that is a leftover from days gone past.

I have recommended your book to my family and am counting on my sisters' support in the future. I know I can call them up anytime or that they will point out something I'm doing wrong or have done wrong in the past. It is that kind of day to day assistance that I believe would be the most helpful.

k said...

Hi John--

As you know, I usually don't reply to these. But, I couln't resist:

1) I agree that Asperger's is not an "illness"

--it is defined by "behaviors"---i.e. it is a behavioral diagnosis.

We still don't know what is going on in the brain to cause the "aspergian' behaviors.

2) We have some kids with autism who, after intensive early intervention, walk out of this school looking like a regular kid. They play like regular kids, complete grade level work in school without help, and people cannot pick them out in a crowd. I don't know if they still have autism "underneath."

My mentor, Robert Koegel, always believed that with new learning, new pathways are formed in the brain--So, it is an open question whether the "underlying Asperger's" can be changed with early intervention--

Kathy Dyer

fractals said...

John
Thanks. Just finished your book. Am 51 and just diagnosed as having Asperger Syndrome. I am not "ill", and I am not "neurotypical". Psychologists are welcome to their views, that's what keeps the economy growing! I like the idea that you can trade off increased emotional intelligence at the cost of a little fading of the brilliance.

Connor Glynn said...

this is somewhat like the docters that said that "you can grow out of ADHD" you can learn to deal with it, but you cannot "grow" out of AHDH, i would know my sister has ADHD

Writerjax said...

John, did you make sure to rub up against him before he left, or maybe cough on his briefcase or lick your hand before you shook his?

Because then, he'd have Asperger's too!!

;)

mikegee said...

thank you so much for this post!

I had come to realize 2 years ago that i have aspergers. I always knew there was something different about me, but i didn't know what it was; i thought i was just "quirky" or a bit eccentric; different. Interestingly enough, i was studying autism becuase my nephew is autistic, and that's when i read about aspergers. It was the missing piece of the puzzle of my life. I took online tests, and scored very high as aspergian. I was relieved and overwhelmed. I went to my family to tell them of what i learned. My sister and my mom told me they felt that's what they have also! here's the most interesting thing: my father (deceased) had many more symptoms than I, he was a very "typical" (haha sorry, i know that sounds ironic!) aspie. and here's the best part: he was psychologist his whole life; a workaholic, kept to himself, spoke with a curious accent, waved his hands about vociferously while speaking, avoided eye contact, wrote for hours daily, read too, and now i wonder, he being a psychologist, if he knew he had aspergers, and chose not to announce it to the world. if he knew, he propbably knew i had it too, but never spoke of it. all my uncles on both sides of my family have similar symptoms, as did both of my grandfathers. they are and were very successful men in their fields of work. we all integrated ourselves the best we could in society, and without conciously knowing of aspergers, or being labeled or ostracized for speaking publicly of the label, we adjusted and grew and succeeded in life.

in summary, this may seem to you like "typical" (i said it again! haha) aspie ramblings, but in essense, what i am trying to impart, is that in my opinion, i feel aspergers is quite hereditary in nature, can occur under the radar, where people are not or were not even aware of articulating this "difference" from "normal" people. I'm quite intelligent. i think differently. i reserve this difference in my art; music and songwriting. in the real world, i put on the act i learned on my own, to relate better to others, particulary NTs. when i meet a fellow aspergian, i feel it's a special time to realte to someone more like me, and i cut the act, and act more like myself.

the main issue with aspergers, and people that have it, isnt aspergers itself; it's the ability to interact with the majority of society that doesnt have aspergers. for this very reason, aspergians will probably always be labeled as a syndrome by NTs, because we are a society of conformism, and labels, and relating to others. I think aspies have bent over backwards trying and succeeding at relating to NTs, i think it's timme for NTs to start to meet us half way, and realize were not weirdos or sick, but a different kind of human being that has many positive, unique qualities, skills and unique insights to world we live in. in essense, we are holding up the mirror to NTs, and showing them we are different, and maybe neither of us is weird or wrong, but simply, different in nature.

thanks,

mike george
myspace.com/mikegeorgemusic

VA on the Bay said...

A friend told me about about your book and I found this blog. My son is 9 and has high functioning autism, I totally agree with what you are saying. Robin in Robin, he thinks differently to us he can't be 'cured' of himself and who he is. If you are interested in his story go to http://explosious.blogspot.com/