Would you like to give advice to psychiatrists?

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First off is to read Congratulations! Your Kid is Strange, and honestly to hand it out to parents. It is a far better guide to what AS is and how it impacts us than anything the medical community has really put out. I am being honest, and engineer on the spectrum better explained everything that is involved.

One of the biggest issues I have is gendered expectations. There is a failure to recognize how autism impacts women on the spectrum and diagnosing it because much of the understanding of autism is from "the men only" perspective. My advice is that doctors need to recognize how it impacts people with regards to both genders and recognizing the differences. That just because somebody is a girl does not exclude them from being on the spectrum, and being on the spectrum may look a little different and the difficulties with socialization may happen at different times (for boys it is in early childhood, for girls it is usually closer to puberty and adolescence). Right now there is alot of failures to recognize it in women because of Cohen's extremely flawed theory of "extreme male brain". The reality is autism looks different for women, not that its really any less frequent. Right now the profession is significantly under diagnosing women on the spectrum, and more often misdiagnosing them. There are some useful resources such as the Asperger and Autism Womens Chart.

I was about to criticize the new definition of Autism Spectrum Disorder, but they just revised it again to better reflect replacing "lacking social emotional reciprocity" with "deficits in". Deficits is better language and what should have been there to begin with. The new ASD diagnosis for the DSM-V is actually very strong.

My other advice is just because there is a deficit does not mean there is a total lack of functioning. For example a person on the spectrum may communicate fine in an interest related activity, but be completely clueless in a foriegn social setting. Being autistic is often VERY subtle, especially into adulthood, and I don't think many psychiatrists understand that.


My last advice is coming from my own personal experiences with therapists. Group therapy is not recommended for people on the spectrum. Because group therapy is highly dependant on "Theory of Mind" issues. Individual therapy can be helpful if done correctly, but group therapy can act counter to it. It is a waste of our time.

Hello DrWilson,

I don't have much to ad that you might find constructive, but when evaluating people who are on the spectrum psychiatrist might try avoiding this question:

Why do you think you are/have Asperger's?
And using the answer as a method of evaluating us. Or may, if they do ask, look to our inability to answer such a question as a clue.

I am quite sure some people with Asperger's could answer that question, but not all of us can. It is not that we don't recognize the symptoms, cause we do. But when asked this question many of us can't come up with those reasons, or at least I can't.

I have a hard time describing my feelings, and giving detailed answers to such a general question... and if I could I likely wouldn't be on the spectrum.

Give me a list of 'symptoms', one at a time, and I can describe what it is that I do that matches that question. But give me the general question "why do you think you have Asperger's" and so many things come to mind that I can't sort them out well enough to even give you even one example.

And I believe that because of this the doctors are presuming I don't have symptoms, because of my inability to articulate them.

Maybe if posed that question in writing we might have an easier time. I know I would. I can go into great description on paper. Just not verbally.

You have permission to publish.

Last edited by creature1001 on 04 Mar 2011, 12:31 pm, edited 1 time in total.

HI - I posted the article below, but forgot to mention that you have my permission to use it:
Posted: Sat Mar 05, 2011 2:58 am Post subject: a Canadian Aspie's advice to psychiatrists

and I also have a follow-up comment, which you can include too. When first diagnosing someone with AS (or counselling someone who's already diagnosed), the subject may appear bewildered that so few people actually pointed out his/her odd behaviour to him/her, and so may be inclined to logically conclude that this is just "a few people's problem". I refer to this as the 90/10 rule, only about 10% of people will _directly_ point out an Aspie's eccentric behaviour to them, the other 90% will let it go, call attention to it obliquely in a way that the AS subject will miss, or gossip amongst themselves. So this should be clearly explained to the Aspie who might be wondering "why did nobody ever call this to my attention, I just _suspected_ something was wrong the whole time, but couldn't tell for sure."

'
No offense Kfisherx, you are a brilliant engineer, but I don't think you grasp the demography. It is not that autism increased per say, but rather there has been better clinical recognition and shifting understanding of the autism spectrum disorders to understand exactly what they are. The rate of people with classic autism, or infinitile autism, that 15,580, which is like .05 in 1000 (it may be smaller to be honest), has not changed. What has changed is the inclusion of AS and PDD-NOS and a broader understanding of autism spectrum disorders. Basically, a large % of that increase is not from autism increasing per say, but rather the diagnostic criteria changing.

Like I said, I am a demographer. I look into the numbers just a bit more to see what is actually going on. Basically, people in the psych field have gotten better at recognizing things, and that takes awhile to trickle down to the mental health field. There is actually a statistical phenomenom with regards to changing diagnostic criteria and the period of time it takes to be fully implimented and understood. Even now alot of diagnosticians do not fully get it, and the standards are still changing, so looking at the statistical information to say "autism is growing" kind of has a false pretext. The reality is "we are recognizing this neurological condition better". Remember the autism definition of 1982, is very different from the one in 1992, and will be very different from the one in the DSM-V. The spectrum and the understanding of what autism is has increased significantly since then.

Go become a real doctor

You are free to use my comment.

I am 38 and a female recently diagnosed with Aspergers.

I would say please, please, please find out about what Aspergers really looks like in females. It doesn't look like what you think it looks like.

I have lost count of the number of professionals I've seen over the years and not one of them spotted that the real problem was autism. I had to discover that for myself and cried with relief when it was finally confirmed.

Oh, and a surprising number of "universal" truths about the human mind don't apply to us. Off the top of my head I can't remember which ones, though.

Consider yourself free to use my comments

Firstly bear in mind that you are dealing with a different culture, try your best to treat autistic culture with respect and also aim to follow the highest moral standards when working as a doctor, conducting research and at all other times.

Next bear in mind that we have our brains wired differently, sometimes an aspie will have a very different value system to your own but never stereotype. It is equally possible that your own value system will be very close to that of the next aspie you meet.

It is important to bear in mind that people with autism are not all the same, never assume that I am a copy of Temple Grandin, Amanda Baggs or someone else you have heard of. It would be equally stupid of me to assume that you are a carbon copy of John Wayne or Mel Gibson.

you have my permission to use my comment in your column." 

The phrase “do you think your special” to differentiate schizophrenia from ASD, is a negative and causes suspicion and low self esteem in ASD individuals.

You have my permission to use this in your column.

The best advice I can give is just to listen to your patient. Everyone on the spectrum experiences life a little differently. What may be true for one patient may not be true for another. You won't run into any one patient that is exactly the same as another. Take each person case by case. Remember that we are all human here.

Most people, though, should respond to logic. Tell them what you kind of information you need from them and clearly explain what is expected of them as a patient. Don't let anything go "assumed". Have them repeat back any instructions to you, preferably in their own words. If they have trouble communicating or describing their symptoms to you, ask them to write them down for you. Have them do this at home or in a quiet environment, if need be.

This is a very useful series of posts. Please keep posting.

By the way. I messed up the title, it is Congratulations! Your Child is Strange
Here is where the book can be found:
http://www.asdstuff.com/grats.html

Truth be told, it is probably filled with useful advice for psychiatrists as well, and while it was written for parents, it is does cover adulthood aspects as well. To say this book is a must read for parents and professionals is an understatement.

You have my permission to use my comment in your column.

Asperger's Syndrome is not defined correctly.

Calling it only a social disorder is not completely accurate.

The social dysfunction is a trait of someone with Asperger's Syndrome.

It is a sensory disorder as well.

If someone read the threads on this board, that would be clear.



************************ I edited my post. It did not convey my feelings accurately ********************************

You may use this in your article if you wish.

Encourage parents to accept repetitive behaviors (such as rubbing or twisting an object or watching the same video a ridiculous number of times) in their children and not try to eliminate them unless they are truly interfering with the child's functioning. These behaviors can be very comforting and enjoyable to a child/adolescent who leads a very stressful life (due to impaired social abilities) and are usually innocuous. Many parents find these behaviors very upsetting for some reason and criticize children very harshly for engaging in them which just adds to the child’s stress

I have made some checks on Dr Wilson, a prof with his name does exist at Oregon Health and Science University. He has published 16 academic papers according to a search of the serious literature. I used name = Wilson WH and I limited the search to addresses which contained the words "Oregon" and "Psych*". His output is largely about schizophrenia.

As he has published some serious papers I think that he is more of a "man of science" than some people who like to dress themselves up as serious researchers. However the act of publishing a paper does not change a person's moral state or ensure that they are morally upright.

You have my permission to use my comment in your column.

Here's your web page:
http://www.ohsu.edu/xd/health/services/ ... ?WT_rank=1
I didn't research any of your published articles, sorry.

Besides writing this column, are you sharing this information with your residents?
Some of the psychiatrists I have seen in the past were residents and attending physicians at the university near me. They were some of the best.
Hey why not take a sabbatical and write a whole book.
There is enough information to.

First off, I'm assuming that someone is in your office due to co-morbid issues.
If they have Aspergers and are otherwise well adjusted than no treatment is needed.
Autism Spectrum Disorder by itself should not need to be treated with medication.
They are probably best off seeing first seeing a psychotherapist, if they are having trouble with social or sensory issues.
So, if they are in your office you must be evaluating them for other issues as well.

I will share two of my experiences very briefly to understand how things can be difficult as a patient. I will keep it brief and not rant.

Please Listen to Your Patients and Don't Be Afraid to Second-Guess a former diagnosis
Please, please tell me you can tell the difference between the negative symptoms of schitzophrenia and autism related difficulties. This was in the early '90s hopefully things are better now, but my life was ruined for years because of this. I was misdiagnosed twice. I have never had anything remotely like a psychosis. I tried to explain written and verbally, instead I was told I was incorrect. Even though I don't tolerate anti-psychotic meds that's all that was offered. This was my introduction in psychiatry.

Please Read Anything a Patient Gives You
Please, please have patience with me, when I am having depression the combination of alexithymia and anhedonia, is really dysfunctional. I barely made it to the appointment and I really want to die, I am hurting so bad. My autistic traits are kicking in, I just can't talk--literally. I spent the night before writing several sentences explaining myself, but the doctor didn't read it and put it in his file. I am not sure what's wrong with me. I'll have to try again next week.

Anyway best of luck on your column. Will we be able to read it here, Can you post a link.
Anyway I said everything I could possibly think in my last post.