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?
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?
Comments
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.
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.
Autism is not a mental illness.
Maybe predisposed to it would be a better term?
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/
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.
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.
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.
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.
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.
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.
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.
"different doesnt mean dammaged."
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.
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.
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
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.
Because then, he'd have Asperger's too!!
;)
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