My therapist knew I had Asperger's but didn't tell me

Post Reply New Topic

Has anyone here asked a therapist/psychologist/psychiatrist/doctor/etc. whether you had Asperger's and found out that he had long felt that you did, but didn't tell you?

I'm 20 years old. I have been seeing a therapist (social worker) and a psychiatrist (referred to by the social worker) since I was 12. At that time I had severe social anxiety, to the point that I was not able to attend school. Since then I have been on an SSRI and have also been treated by several other mental health professionals (e.g. a psychologist specializing in behavioral therapy). I have also had episodes of major depression.

After years of wondering about my sexual orientation, I recently came to the conclusion that I am asexual. On the forums of the asexuality web site AVEN I noticed that a lot of the members are on the autistic spectrum. I found a link to an article from the Guardian by Simon Baron-Cohen describing his empathizing-systemizing theory of autism, and his tests for the autism spectrum quotient, empathy quotient and systemizing quotient, with which many of you are probably familiar. My scores were:

* Autism Spectrum Quotient: 44 - very high (average male score 17, average AS/autistic score 35)
* Empathy Quotient: 4 - very low (average male score 42, average AS/autistic score 20)
* Systemizing Quotient: 54 - very high (average male score 30, average AS/autistic score range 40-50, three times as many people with AS/autism score above 51 than without)

I took the tests out of sheer curiosity, not expecting to find much. I expected that perhaps I would get scores somewhat more toward the autistic range than average, but I hardly expected my scores to be so extreme, since I assumed I didn't have Asperger's or autism. I assumed that I could hardly be more than a borderline case - I have seen so many psychologists, psychiatrists and so on that I assumed if I was any more than that, someone would have noticed and said something.

After being shocked by my scores I read up on Asperger's and I found that it described me almost perfectly. I had traits that I'd never even thought about before (example: extreme sensitivity to bright light) that turned out to be possibly related. At this point I was rather confused since I seemed pretty certain that I fit the description, and yet I'd been exposed so many people who I figured should have known if I really did have Asperger's, and none ever said anything.

So I brought my scores and the Baron-Cohen article to my bi-weekly appointment with my therapist. (I see my psychiatrist much less frequently.) When I showed them to him he said he didn't even need to read any of it - he knew where I was going with it, and that he had known for years that I fit the criteria for AS, but he never felt the need to tell me, since he didn't think it would make any difference in my treatment, and there was a possibility I might have reacted negatively.

I was rather surprised to hear that and I am wondering about others' opinions. I am certain he had my best interest in mind but at the same time I question his judgment in not saying anything. I also am now in the position of wondering who else knew but didn't say anything... I have to see my psychiatrist next week and I'm totally unsure of how to approach him with this.

PS: Sorry, I can't post hyperlinks to articles etc. since I haven't been registered for five days.

from my own experience and from what i have read here on wp, it is usually a relieve to know. he should have told you. reading up on asperger's, i have also discovered traits i had never thought about before. i have always been different from others and it has been a big surprise to find out that actually every single one of my differences are explainable by asperger's.

In my opinion your therapist has acted in an unacceptable manner. You have a right to make informed decisions about your health care and you cannot do this if you do not have all the facts. I am disturbed that your therapist appears (in my opinion) to have usurped your autonomy in this patriarchal manner.

Its made worse by the fact people with aspergers which you might be hate people keeping secrets and arent really good at reading people so cant tell when they hold secrets from them. This may result in a complete lack of trust now you know that they will keep things from you.

It may be cynical of me, but they can be greedy these people. If a name for your 'problems' is found perhaps that would be the end of your need for couselling.

I don't know who's paying the bills, if it's your parents they may have preferred it that way. Some parents don't want their kids labelled, they feel you can 'live down' to the label or limit yourself. I suppose you'll have to ask (if they are involved).

Must be a big shock for you.

Welcome to the site.

Based on what you describe, it doesn't sound like they acted responsibly. If they suspected it, they should have tested you for it and then told you if you were positive. Not only that, but the treatment for aspergers is often NOT pharmacological, so SSRI's are not always the answer and don't always work.

Incidentally, I'm also asexual and have AS. I didn't know either until about 2 years ago. However, I did spend several months in denial once I found out that it was a type of autism.

========EDIT
PS: A psych doctor or therapist will seldom tell you what he is testing for because that can throw off the results.

The old psychiatrist I saw, thought I had Asperger's ever since seeing him; it was two years later when I brought it up that he told me (I stumbled upon Cohen's AQ test). He thought the OCD was the main point, and treating such was what was needed; once that was successfully treated, I was still having all of these "problems", and CBT wasn't working for them (this is what led me on the search for what was wrong with me).

It turned out I actually had Autism-proper, and all of my problems stemmed from such (even the OCD manifested due to such as I was anxious from the Autism).

Some people are just STUPID and/or greedy. The OCD like symptoms make AS more livable, and keeping AS people in the dark means the psychiatrist can give them "therapy" forever!

Hi there,
Welcome Dougn,
I think the therapist's behaviour is very wrong. What do your parents, friends or others think of this? I think it's outrageous. How can you trust the man now.
And for how long you've been on SSRI? I'm not an expert but that stuff doesn't really work for autism, maybe it's even contraproductive. And the list of contraindications is long and severe.
Hey high-functioning fellow members, what do you think of this?

Best of luck to you, Dougn
Ceesjan

[quote]
Simplex Sigillum Veri

i have a friend who has aspergers, were both in high school. year 11 in september. but anywho. iv thought he had aspergers for a long time. i confronted him about it last year. in year 10. he told me that he did have aspergers but he only knew about it from the school year before that. year 9. after an incident occured where he was recorded on mobile phones acting inapropriatly then uploaded onto youtube as "spacker 1" and "spacker 2" (none autistic teenagers are the soul meaning of evil, dont you think?) . after his parents found out about that from the school after they found out about it. the kids who did it wern't punished (talk about enforcing the rules) and his parents finally told him he had aspergers. he tells me his brother has aspergers too but he doesn't know.. i really dont think its fair that he had to wait till he was 11 to find out he had aspergers whereas i have known all my life. i have no idea when i was told infact. its just second nature to me. still. in the same way i think its wrong that you were kept in the dark untill you were 20! thats just disgracefull. no disrespect intended to you or those whom decided not to tell you. so yeah. im with you on that buddy. that was wrong

Daniel is typical example of what can happen.

I think these sorts of people are badly misguided and self important at best. There is some science behind not delving the past when dealing with trauma, as it is can actually make things worse and not strictly necessary to treat. However in the case where they have diagnostic information about you, they have a duty to tell you. Also their opinion is only worth so much. Example: I have cognitive problems that the majority of psychiatrists would know nothing about frankly, and this is not just coming from me. So therefore cagey shrinks may be inclined to form their own conclusions based on their limited knowledge, then do f**k all about it and not even give you the opportunity to find someone who might be better placed to help. I have been used to these kinds of time wasters. I wouldn't be where I am to do without my own efforts. Best thing to do is to tell them the score form the start. No caginess will be tolerated whatsoever. If not, they are implying that they know more and are better placed to deal with all of your problems then someone else, which is a dangerous thing IMO.

I also had a different experience: A shrink thought I had it and wanted to tell me. However, she tried telling me quite subtlety, which kind of confused me. She mentioned the Silent Incident of the Dog in the Nighttime, and I was bemused as that is nothing like me. I was also a bit angry at the time. So she left it for six months when I was a lot better, and told me straight up. I think she did the right thing in that instance. Also she was aware of her limitations. It wasn't her that diagnosed me, she wasn’t sure.

Next time you have a session feel free to show them this. Personally, being proactive has been more successful for me. Obviously you can only do that with the benefit of hindsight. I always say I'm a straightforward person so only respond to straightforward communication.

People are not the same, somethings just don’t work on people. The same shrink, who incidentally I thought was excellent and helped me with many things including desensitising my eyes to direct gaze, tried things that didn’t work on me. One of them was not talking at the beginning of the session until I talked. I think once she tried for a good ten minutes. She tried this for weeks then eventually gave up. While I can say greetings and some brief things, I usually need to hear someone else’s voice for a while, and then I can talk nine to the dozen.

I took this report (I have researched Aspergers and suspect i have it, but have not been diagnosed) and my scores are as follows:

Autistic Quotient - 44
Empathisizing Quotient - 4
Systemizing quotient - 76 (and I'm a girl)

Crazy. I'm glad I took the test. I haven't talked to anybody about them, but I wanted to say thanx for the info about the tests being on the internet. It helps me in my research and in knowing what I am about, I guess. Hard to explain. NO good at explaining anything.

Your therapist's attitude is just another variation on "I know better than you do what you need." It's also a control issue. Otherwise, why would he withhold information that could be helpful to you? And what's with the "you might have reacted negatively?" It isn't cancer, after all. Isn't it part of his job to help you through any negative reactions? Maybe that statement reflects his own feelings about autism, which may also mean that he doesn't really know that much about it.

Last point: there is no "treatment" for Asperger's, but there are ways to adapt to and modify the parts of it that are a problem for you. He denied you the chance to learn about them and find out how to make use of them.

he sounds like a pompous idiot. i would be way beyond ANGRY if i was in your situation. knowing someone had the answer to all the confusion, could have relieved the pain and frustration of thousands of hours of me trying to work out what was WRONG.

f**k symptoms. f**k just treating the "symptoms". once i know the reason for something, i can let it go. never before.

once i discovered AS, i never had the desire to talk to a therapist again. the only reason i ever went in the first place was to find out exactly that answer-- the what am i? where do i fit? i didn't need them to tell me what i ought to be doing- i KNOW what i ought to be doing, i just never understood why i couldn't DO it.

so yeah, the psycho prob didn't tell you, because then you might not feel any need for "therapy."

Wow, there are some very strong reactions here... Keep them coming.

I still feel very conflicted about this. I really do think he felt that he was doing the right thing. I also feel that he did the wrong thing by withholding this information for so long.

I'm not sure exactly how long it has been since he has known or suspected this, but I was probably pretty young at the time. My parents would have had to have found out then, and I don't know if I'd have wanted that to happen. I don't know if I want them to know now, either. (Then again, maybe they have suspicions... I have no idea.) I think he probably had a professional obligation to say something as soon as he was certain I fit the profile for Asperger's, but at the same time I don't know if I'd have wanted him to say something. I know I'd have wanted to know, but when I was much younger it would almost certainly have resulted in other people knowing, who I'm not sure if I'd have wanted to know.

On the other hand, I am an adult now, and I certainly would have wanted to know. I should not have had to bring it up myself. It is not my job to diagnose myself.

I am left in the position of questioning what everyone thinks or knows, and what I should say to various people. I know I have to say something to my psychiatrist. I don't know who else I want to tell or don't want to tell. I am extremely confused at the moment. School starts in a couple of weeks and I just don't want to be bothered... I have too much on my mind right now. GRR.

Oh, the SSRI... I've been on it since I was 12 or 13. So that's seven or eight years now. I am afraid to go off it because I know it is physically addictive, despite the fact that this isn't (and certainly wasn't then) routinely disclosed in the US. The last thing I need now is to become physically sick from drug withdrawal.