Would you like to give advice to psychiatrists?

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I'm a professor of psychiatry in Oregon. I write a column in a newsletter which is read by most of the psychiatrist who practice in the state. My topic this month is about how to work with adults who are on the autism spectrum. I would like to include comments from Wrong Planet members, since you are the experts on what makes a visit to a psychiatrist go well for you, and what turns a visit to a psychiatrist (or other doctor) into a disaster. Psychiatrists need to hear these things from you. My submission deadline is in about a week. I am not paid for writing the column and I have no financial relationship with pharmaceutical companies.

I hope that the column will consist of a brief introduction, followed by a selection of your comments, which I will have briefly edited, mostly for length. I will select the comments that seem to best capture the concepts that are presented. I will cite the comments as being from a member of Wrong Planet, but will not give your use name. I would like to cite your gender and age.

I will only include your comment if you state that I may use your comment. You may respond on the list or send me a message privately. PLEASE include in your message something like "you have my permission to use my comment in your column."

It would help if you could state your desires in positive terms, since positive statements are more likely to result in productive change in the behavior of psychiatrists. For example, a positive statement might be "talk to me like and adult," whereas a negative statement of the same concept might be "don't talk to me as if I were a child." However, feel free to give your advice in any way you wish.

Thank you for your assistance.

Recognize that functioning well (being happy, succeeding at the goals you set) is more important than looking normal. In fact, looking normal isn't particularly important at all unless you want people to think you are normal, and while there are times when that's useful, it shouldn't be the default. You should probably rephrase that if you're going to use it, the way I phrased it kind of sucks but I think you know what I mean, right?

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

I think it is important to explain to the patient the logical reasons for different social conventions as well as the logical reasons why they should try to be more normal. I am saying this based on my own experience, as a physics graduate student, and now a post doc. But the logic behind this rather specific example is also valid for other, non-academic, situations that people with Asperger might face.

In my case, I have been told multiple times for the duration of few years that if I want to have successful academic career I have to put some energy on socializing and not just a research. However, I simply didn't believe that was the case, since my experience as an undergraduate was telling me that professors only worry about academic performance of their "students", and nothing else. When I was told I was not a "student" any more and the rules have changed, I simply assumed that others were exagerating things and didn't believe what they had to say.

What changed my mind about this was my own realization of where I went wrong after I continued neglecting socialisation for several years, which kept putting me at worse and worse "academic" situations. At first, I didn't see the connection between "social" and "academic" aspects. Only later I realized that the connection is obvious: in light of the fact that physics research is very diverse, no one would have time or energy to understand my work, let alone participate somehow (such as either help me along the way or provide favorable evaluations) unless some personal relationship has been established.

At the same time, however, being "told" this very thing never worked since back when I was undergraduate the evaluation of my "homework" was independent of personal relationships. I believe, however, that if I had circle of friends at different levels, I would have seen from their examples that "the rules" do change when you go on higher level and then I would have believed what I was told. In other words, what I needed is "real life" example of the connection between socialization and career. Due to my isolation, the only "real life" example was my own experience; but that, of course, was produced at the expense of ruining several years of my career. These years would have been saved if I were to learn about other people's experiences, either through socialisation or through the therapy.

This brings me to a more general point I would like to make. In light of the fact that people with Asperger's are independent thinkers, they might not take advice seriously if it doesn't seem to be confirmed by their own experience (which might often be quite limitted). This might be true not only in academic environment but with other aspects as well,, such as finding job, making friends, getting married, and so forth. For that reason, I believe it is important in a therapy to supply patients with the examples of experiences of other people that might confirm the message that the therapist is trying to give.

It is also important that at least some of these examples describe neurotypicals. That way the patient will see that the advice is good "for everyone"; this would prevent possible rebellue by a patient that a therapist "assumes" they are less functional than they really are which means that htey don't have to follow that advice. At the same time, naturally, it might also be important to provide the examples of people on the spectrum as well, since their situation might be more similar to the one of the patient. Probably the best approach is to furnish the patient with a range of different real life examples, which includes both neurotypicals and patients with Asperger, and leave it to patient to decide for themselves which ones are more applicable to their situation. This would probably increase the chance of patient learning what is to learn without rebellue standing in a way.

Once again, you have my permission to use my comment in your column.

Don't force your autistic clients to give up on their special interests.

Where I live, the method of psychiatry is to destroy the personality in order to build a "good" one. The patient is expected to have complete faith in the psychiatrist and to be dependent on the psychiatrist. If this is the case, then the psychiatrist should diagnose, prescribe, sign the government forms, and refer the patient to a psychologist and a social worker. A psychiatrist is trained in the workings of the brain, which isn't very useful in daily living.

I would like to avoid psychiatrists altogether. The only reason we need psychiatrists is government demand. I don't know why Asperger's is in the DSM at all, since the only truly valid diagnosis is by autopsy. I can tolerate diagnosis by psychiatrist if I must (and I have), but I don't accept any psychiatrist's orders about stimming, for example. I don't believe psychiatrists are qualified to tell me where and how to live. Psychiatrists have too much power and no training in matters that more properly belong with a social worker or psychologist. Diagnosis might more properly be done by neuropsychologists.

You have my permission to use this in your column.

Welcome to Wrong Planet DrWilson and thank you for your question. I just wanted to say that and I will ponder what input I want to give later.

You may freely use this posting.

One thing to remember is that autism is an active field of research, and that the causes of autism are not fully understood. It is important for professionals to stay current, because our best understanding is constantly changing.

Remember that although autism is most commonly studied as a childhood disorder, children grow up to be adults. Autistic traits do not go away when a child becomes an adult. Many older individuals never had a chance to be diagnosed because the diagnosis did not exist when they were young. Many such individuals learned how to cope, how to blend in, because that was the only way to survive. Just because someone learned how to blend in does not mean that they have no need for help. Just because someone has managed to hide the symptoms does not mean that the symptoms are not there.

This.

I am writing this from a French perspective, you will decide if it is applicable in your country. You may use it as you see fit.
Psychiatrists here have a close relationship to psychology, in fact psychology has entered popular culture so much that it is seen as a science in France. While some aspects of it may be worth exploring regarding neurotypicals, I do not think most of it is applicable to people on the spectrum, and making assumptions about what could be the "real" thoughts of an autistic patient while they are explaining in clear language what their thoughts are and why they are is bound to make them defensive, which could get in the way of the trust needed between a patient and his therapist.
The relationship should be one of trust, not only from the patient, but from the professional too.

I would like to share my view on neuro-diversity which clashes with what a lot of psychiatrists say, you can use any of it if you like in your column or anywhere else.

There are many people who feel that neuro-diversity is actually fully intended which makes logical sense when you consider that humans are a group species and if we all help each other work towards our individual strengths and compensate for each other's weaknesses neuro-diversity is a huge asset to the group. Society is actually incredibly intolerant, demanding, uncompromising and conformist and so many forms of neuro-diversity are unaccepted and given derogatory terms. An example of societies intolerance is the fact that nudity in public is illegal, people can't tolerate their own bodies and something that isn't naturally wrong is given a derogatory term "indecent exposure" much in the same way neurologically diverse people are given derogatory labels "aspergers syndrome, autistic spectrum disorder". Many "mental illnesses" could actually be called "neurological differences" as the person's brain is actually working 100% as designed and intended by our neurologically diverse species. For some people higher up on the autistic spectrum problems are caused not by their own minds being deficient but by incompatibility with a deficient society that doesn't cater for them, we could easily be living in a world where most people have aspergers and NTs are classed as having a mental illness. That's why personally I find terms such as "aspergers syndrome" and "autistic spectrum disorder" unacceptable. Yes there are weaknesses in some areas but not everyone has a label defined by their weaknesses. It's a really good thing that there is a label grouping me with people I can relate to as I was having problems in areas of my life I couldn't explain until I understood myself by learning about aspergers and the autistic spectrum however the label is still derogatory, it's hinting that there is something wrong with me and I dispute that.

That's longer than I thought it was going to be. I guess the message is that I have no respect for anyone telling me I have a disorder or that there is something wrong with me, I would have respect for someone who is open-minded about neuro-diversity and who knows there are specific problems caused by an incompatibility with my mind and other people's minds and that many problems are caused by living in a society built by NTs for NTs, not a problem with my mind and I don't want to waste my time learning to socialise with people I dislike (why would anyone want that) or learning to become more of a conformist to a society I dislike.

hi professor,

thanks for your question, you may use my reply like you want.

1.) autism not not well researched yet, so there might be many theses which are wrong out there. But the theory of "intense world syndrom" seems to be one, on which a large part of also the people with this traits do also agree with, though not all of them agree that it covers all aspects. But it certainly would improve the underrstanding on your side if you would study the implied thesis in there. I know some people who even studied psychology here, but when they found out i got AS, they just knew the stereotype, thought that I dont have much feelings and would not like to have any relationships with others, but just want to spend my time on my interests.

2.) AS is no syndrom, or disorder, its just human evaluation. Centuries ago the western culture found out that there are also other cultures out there, and that they are different. They found the indians and soon, and they used their own values and attitudes to evaluate their behavior and way of living, and came to the conclusion that their own culture is better and more advanced than theirs. Today people think less then in the past, that any culture is better than another one. Today, it has been found out that there do exist different minds, the people with the most popular mind see that the behavior of AS people are much different, and use their own values to judge their behavior, coming to the conclusion that their mind is better, and the AS people have a syndrom, a disorder.

3.) listen more to those guys who have it, instead of learning from books. They still got too many errors. Even on wikipedia you still can read untrue things about AS people, and the the things psychology people got taught doesnt seem to be better.


best regards,
anton

You have my permission to use this post in your column.

Male, Age 38
jackbus01 (I have a gmail email that is the same if you need to contact me personally)

Well, I have certainly seen plenty of psychiatrists over the years. I have been dealing with all kinds of different problems from age 18-38 (now)
Aspergers (with alexithymia) and Mood Disorders (now bipolar type 2), fun combination-huh!
I feel so strongly that maybe someone will read this I am going to comment.
I actually think time (beyond everyone's control!) is the real enemy here. There is never enough of it.

Positive advice for psychiatrists here:
1. Listen to patients and have a discussion with them. It really is a two-way street. Don't just tell the patient what to do. The best ones I have had play the "technical expert" role.
2. Encourage patients to write down their thoughts about treatment and diagnosis and bring it in. This works great for everybody. My current psychiatrist does this. This also works good who are not as good with their verbal skills.
3. If the patient thinks it is a problem then it is a problem. Explain what you can and can't do about it. Treat the patient with respect.
4. Admit it, psych meds can be real pain, but they are very essential for treating some illnesses--honesty here helps. Remind patients they are one of many important tools to manage their illness, even if it makes them feel weird at first or have side effects.
5. Don't be afraid to second-guess a former physicians diagnosis, if it just doesn't make sense (yes, I have experience here!)
6. If it is allowed by your clinic, have referral numbers for the following in case your patient needs them: Pyschotherapists, Social Workers, Support Groups, among others.
7. Don't forget to tell your patients that their medications will work better, if they are in good physical health. (better than saying exercise and eat right)
8. If you have a patient telling you "could it be...", explain why or why not.
9. Explain what you think the problem might be, or just say you are not sure yet.
10. Explain why you think the med(s) you are prescribing is good.
11. If you are not sure of something say "I'm not sure" (the best doctor I had told me this)
12. Don't be intimidated. Veteran pyschiatric patients know a lot about psychiatry.

Asperger Related Issues:
1. Encourage writing down issues before session. A lot of aspies are not their best in a high pressure verbal situation.
2. 85% have Alexithymia which can make treating depression, anxiety etc. and mood disorders different/difficult. (I have personal experience here)
3. Hopefully you are just treating co-morbids becuase aspergers by itself does not require medication.
4. Aspergers people need to be explained why, if this isn't done then there will be non-compliance.

Realize that it is a frustrating for the both of you sometimes, really
What turns it into a disaster is when communication breaks down. Don't forget the patient really is in charge--really. They can be non-compliant if they don't agree with you.

Disasters From the past (can you spot the problems!):
Me: "I am really having a lot of trouble with lithium because of ....(several reasons listed)"
PyschDoc: "I don't think it is a problem, you could always lose some weight, maybe that would help."

PyschDoc: "I think you need some risperidal"
Me: "I really don't tolerate antipsychotics well. I seem to have better success with ssris"
PyschDoc: "maybe a small dose of risperidal"
Me: "How would that help my anxiety."
PyschDoc: "if you don't want to take medication, I can't help you"


I truly hope there are some pyschiatrists out there that really want to better themselves. It is hard to find one and even harder to find a good one.

Thank You for listening to me Dr. Wilson!

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

Please do not confuse my ability to articulate anything as evidence of an ability to actually function well within this two-dimensional world I just do not understand.

Joseph Lee O., age 60

Don't stop with one column. The issues faced by adults on the spectrum can't possibly be addressed in any comprehensive manner in a single essay. The best outcome would be for your words to convince people that they really don't know as much as they think they do and they really need to "go back to school" as it were. Don't try and illuminate autism. Illuminate institutionalized ignorance about autism. Then maybe some of your colleagues will drop some of their old ideas and stereotypes, suck it up and do some critical thinking and research about the current status of the field and where they can best help.

You can quote me if you like.

This post may be edited and printed...

Dr Wilson,

I am also from Portland area and am a Senior Program Engineerining Manager at Intel in Hillsboro.

http://autismwomensnetwork.org/category ... rla-fisher

First: It is GREAT that you are doing an article on Adults and Autism because in the Portland area, it is still deadly hard for us to find more than 1-2 professionals who have any real experience. If there are more, they are not advertising anywhere that I can find... So first advice is for anyone who is actually versed in the area of adult/aspergers to get themselves out there. And by "out there" I am meaning internet searches of course. Another option is if they want to forward their contact info to me, I work with the adult Apgerger groups in Portland and can pass their info on.

Second: I think it prudent that all professionals understand the business side of this picture to stress that if anyone is not yet familiar with how to work with adult autisitcs NOW is the time to learn. The numbers of autistic individuals roaming this planet is increasing in epedemic proportions. In England it is estimated that more than half (60%) of the 60 billion dollars spent per year on autistic services is for adults.

Here is a series of sources that show the prevelence and increase rate of the disorder
From 15,580 in 1982 to 38,0438 cases in 2008!!
As Diagnostic competence and awareness increase so do the cases
Cumulative growth from 1992-2008 is +2039%

http://www.thoughtfulhouse.org/tech-lab ... autism.php


Just in case you do not cover this elsewhere here is basic info

Reportedly 35-60 billion dollars per year price tag and rising!
http://www.hsph.harvard.edu/news/press- ... 52006.html
http://support.autism-society.org/site/ ... factsstats
@1 in 150 children are being diagnosed today (some studies reporting significantly higher rates)
http://www.nimh.nih.gov/health/publicat ... ndex.shtml
CDC reports a 57% increase in Autism rates from 2002-2006
http://www.suite101.com/content/nationa ... 10-a190120
Autism Rates of K-12 children have tripled from 2002-2010 in CA.
Autism represents nearly 10% of all special education in CA
Autism is the fastest growing student disability in the country showing a steady 10-17% annual growth rate
http://www.huffingtonpost.com/2011/02/0 ... 18709.html
http://www.ppic.org/content/pubs/report/R_109SLR.pdf

Third: There area number of things to be aware of when specifically dealing with Asperger clients IMHO.
1. Many of us have troubles abstracting. So talking about very abstract subjects (including how we "feel") may lead to roads of frustration. Take the questioning to more literal places for more positive results and learn to break the questioning level down.
2. Many of us have trouble understanding but we are really good at "faking" it. Make sure that you pause during the session and get the AS client to repeat back to you what they thought you to say.
3. Many of us have troubles with sensory processing. Things to avoid if possible in your office. Noises such as ticking clocks on the wall, Floresent lighting, lots of busy patterns in things.
4. Valerie Gauss in her book CBT for Adult Asperger's Syndrom writes that in her experience it takes approximately 2 times longer with an AS case than with an NT case. This has been my own experience even though my abilities are much higher functioning than her examples. Net is to have the patience and give it the time it needs. AS folks tend to have a different "clock" than the rest of the world.

Some very illuminating comments on here so far. As far as treating & counselling adults with Aspergers, my principal advice is to take what the patient says seriously, as Aspies have a virtual incapacity to lie, and are unlikely to be perverse or passive-agressive when describing problems - if they say that constant criticism from peers is unfair, it is because they genuinely feel that way. Having said that, I truly believe that a psychiatrist's foremost role should be talking the AS patient through unpleasant experiences first, such as bullying, rejection, criticism, to get them to learn from the experiences - as the AS subject has great long term memory, this can come in handy for a strong patient dynamic, as they can conveniently recall less-than-satisfying social experiences (but not quite know why they occurred). Going forward with learnings and unloading of the past, the next strategic step would be to formulate a plan for the Aspie to deal with social situations accordingly. A psychiatrist is probably not the best person to "train" an Aspie, however - this is best handled by speech therapists w/ AS specialization (I went and saw one of these for a few sessions following my diagnosis in my late 20s, and it worked wonders!), physical therapists, and occupational therapists.

I know the emphasis should be on what positive behaviours would I recommend, as per the original request for feedback, but I feel compelled to point out a couple of do-not's based on personal experiences in the late 90s with a youth psychiatrist:

1) Do not use the "litmus test" of showing some of your own facial expressions to the subject to see if he/she can decipher them; this is a flawed method for two reasons, a) it is not in a spontaneous setting, and b) there is no other "channel" conflicting for the Aspie's attention, such as voice tone, words, hand movements, or other happenings in the room. My former psychiatrist used this "test" on me and claimed after that I don't have a problem with body language. So, if anything, just use this test to ensure that they have at least _some level_ of body language comprehension - _but nothing more_.

2) Avoid GENERALIZING statements (these are part of the NT custom of "smoothing things over"). My former psychiatrist told me on more than one occasion to my concerns "well, everyone is different, imagine how boring the world would be if we were all the same." AS people have heard this type of "cliche advice" and find it generally insulting. It is the advice of Joe Smith from the street, but not the advice befitting a licensed professional - so my advice would be to strive for a win-win and give advice of substance, genuinely acknowledging the Aspie's need & want to increase their sense of belonging in society, and you will recognize a difference in their outlook & demeanour. avoid "cliche advice" which both insults the psychiatry profession and the patient.