Difficulties with the diagnostic proccess.

Post Reply New Topic

Hello,

Sorry about the length of this post. I am currently seeking help for problems that may or may not be due to Aspergers Syndrome, and am finding the process very confusing, distressing and frustrating. I was wondering if anyone here could offer me some advice, or had experiences similar to mine. My Mother is convinced I have Aspergers Syndrome due to my inflexability in day to day life and my behaviour as a child. Every professional I have spoken to dismisses the possibility immediately. I don't know if I've got it or not. I can communicate with people very well about my work and interests, and am very good at making formal presentations. I do well at job interviews if I am interested in the job. Socially, I can talk to people for a short period on a one to one basis with few problems unless they are upset, angry or having a go at me.

Throughout my childhood I was always more interested in the world around me than the people around me. I had impressive collections of various objects and an obsession with dinosaurs. I was also very clumsy and was unable to perform some simple activities such as tying my own shoelaces until I was about eight or nine years old. I had extreme difficulty interacting with other children and making friends (only ever had one friend at a time), but I excelled in all my subjects except sports, maths (can't do mental arithmetic) and handwriting. Many of my teachers liked me despite my appalling behaviour in the playground. I was always subjected to bullying, which got worse as I got older.

As I grew up, my behaviour improved as a result of parental discipline and a strong desire to fit in. I still had no success, became lonelier and lonelier, and eventually left the school I attended due to bullying. I was assessed by a psychiatrist, who attributed my problems to bullying and sent me to family counselling. The counselling improved my self esteem greatly, but when I started attending another school I had the same problems I had before. At university I had several very bad experiences with people which left me extremely wary of other people, to the extent that my parents say my personality has changed dramatically.

I sought help just before I left university, but I had a very bad experience with the university psychiatrist. I mentioned that my Mum thought that I might have Asperger Syndrome. He dismissed this out of hand saying that there was no way I could have it as I am capable of making eye contact, do not appear to be emotionally blank and have sufficient life skills to support myself financially and live without assistance. At the time I was very nervous, and he spent the rest of the time questioning me about my parents' divorce. I was so busy trying to placate him that I wasn't able to ask him for help figuring people out, which was what I wanted. He told me I was a neurotic student and that my problems would go away eventually. This left me very frustrated and upset, and I didn't go back.

Nearly a year later I again sought help, this time at the university where I am doing my PhD. I went to the student counsellor, which also went very badly. I went along, she introduced herself, sat me down, sat herself down, and stared. And stared. And stared. I had no idea what I was meant to do or what she expected of me, and found the sessions frightening. She wanted me to tell her what was "on my mind" at the time and point blank refused to give me any practical guidelines on how to interact with people and spot untrustworthy ones, saying that "problems with relationships are best solved in a relationship", although there was no way I could actually form a relationship with her. It was like talking to a brick wall. She wouldn't talk to me except (rarely) to ask me a question, stop me going off on a tangent or occasionally to tell me one of her conclusions, which made no sense at all. I left after four sessions.

A couple of months later my Mum contacted the National Autistic Society (UK), who were extremely helpful, gave me some information on social interaction and recommended that I try talking to the university doctor about it. I did this, and she interviewed me and sent me to see their psychiatrist, who she said had experience with Aspergers Syndrome. He came to the conclusion that I am withdrawn from people due to my parents divorce and to the bullying I received as a child, and has enrolled me for Freudian psychoanalysis (which I am dreading). This makes no sense, for until I went to university I wasn't withdrawn in the slightest (which caused me a lot of problems). He has also enrolled me for assessment at a local universities' department for genetic psychiatry which he says should find any biological factors, which he reckons will help me move on from the idea that my problems have anything to do with autism.

I'd be very grateful if anyone here could answer any of these questions:

* Is it actually likely that I have Asperger Syndrome or something similar?
* Are any of these experiences similar to your own?
* What's the best way to deal with counsellors and psychiatrists?
* What is the assessment at the department for genetic psychiatry likely to entail?
* Is this assessment likely to be enough to
* What is freudian psychoanalysis likely to entail?
* Does freudian psychoanalysis actually work, and is it's action on Autistic people different to it's action on Neurotypicals?

I don't expect people to answer all of these questions as there are quite a lot of them and this has been a very long post. Thankyou very much if you have,

All the best,

R. M.

"He dismissed this out of hand saying that there was no way I could have it as I am capable of making eye contact, do not appear to be emotionally blank and have sufficient life skills to support myself financially and live without assistance."

I am so angry that there is a professional out there who would base his diagnosis on such a stereotypical description. People with AS can have reduced eye contact, but I have known at least one person with AS who actually made too much eye contact, so it differs for everyone.

I am diagnosed with AS and I can make eye contact. I'm also quite good at public speaking, but I am not so good one on one. In my diagnostic report the doctor refers to my reduced nonverbal expressiveness, such as reduced eye contact, as well as reduced facial expression and/or idiosyncratic facial expression. However, I can make eye contact. My doctor would never assert that I do not make any eye contact. Obviously we all have to make eye contact at some point, otherwise we probably would be sent to live in an asylum. I mean how could you even cross the street if you always kept your head down or how could you maintain the most rudimentary social skills if you always had to look away from people's faces? Think about it, and you will realize how silly that psychiatrist's assertions are about people with AS. Not only do we make eye contact, as part of the requirement of daily life, but ALSO, people with AS have often learned to do quite well socially, just like regular people. It is possible for anyone, including people with AS to compensate for or mask any feelings of discomfort in social interaction and so another person, even a doctor, would not be able to tell whether or not a person has AS just by watching for "eye contact" or other small gestures during social interaction.


I think that if you want a proper diagnosis then you need to find a doctor who has some expertise in diagnosing AS. The National Autism Society might be able to help you find a qualified doctor in your area. Also, there might be someone online in this forum who can tell you where to find a specialist who is properly qualified to diagnosis AS in adults within the UK.

I think the diagnosis is actually supposed to be based on "abnormal eye contact", not just the lack of same. I have read/heard that some people who are diagnosed with AS have *too much* eye contact, which can be just as socially troublesome. The point is that in NT society eye contact fulfills a specific purpose in regulating conversation and conveying subtleties of emotion, and aspies generally don't send/receive the correct signals even if eye contact is present.

The problem with diagnosing adults is that some doctors take the diagnostic criteria as gospel and fail to account for the fact that we usually acquire compensating strategies as we get older. An aspie child will closely resemble the DSM definition whereas adults diverge from each other and from the stereotype, whether it's learning to make eye contact or approaching social situations using scripted behaviors or applying a logically reasoned approach where an NT would be intuitive.

The other problem with diagnosing adults is that we tend to develop comorbid disorders, some of which may overlap with AS. It therefore takes more detective work to sort out which symptoms apply to which disorders. AS presents most of the symptoms of PTSD (but not the other way around) and most adults have a history of bullying, etc. in addition to whatever may have gone on inside the family, so it's not hard for an inexperienced doctor to focus on the traumatic events and diagnose PTSD. A more experienced doctor will start with your childhood development and try to determine whether or not a learning disability was present before you began experiencing the stresses of adolescent or adult life. That's why it's so important to have a parent with you who can explain that "he's always been that way".

Jetson and Anandamide, Thanks for getting in touch. Jetson, I think your suggestion to take an adult along is a good one- my Mum has asked if I want her to come along to the assessment, and I'll ask her to do so. It makes sense to have the input of someone other than the person being assessed when looking for a developmental disorder. Anandamide, your right about the whole eye contact thing. The first psychiatrist I saw didn't seem to have any experience with Asperger Syndrome at all. The National Autistic Society have given me a list of qualified doctors who deal with adults with Asperger Syndrome, but I doubt I'd be able to get a referral, and the private fees are beyond my current means.

I don't know how it is where you are, but the fees can vary greatly. You might try calling around, and you might have to make alot of calls, but you might find that there is a doctor out there whose fees are affordable, as compared to the many doctors who charge an arm and a leg for the diagnosis.

Thanks Anandamide, I'll see what I can do. I'll wait until after I've had the tests at the department for genetic psychiatry- if they find anything I might get a referral for free. Britain's National Health Service is a GOOD thing!

I hope this helps. Canada's health care program is a GOOD thing too.

One failing of our system though is that it only covers trips to psychiatrists, not psychologists. I have found in my experience that psychoanalysis is not the best route to go. The psychiatrist wants to analyse ever aspect of your behavior in depth, and then prescribe pills. Whereas a psychologist does the diagnosis based on the DSM criteria, after ruling out any other disorder based on symptoms. I hope you do not get shoved into treatment with a psychiatrist because I think that is totally inappropriate as AS is an issue of diversity in brain structure, rather than a mental illness.

So do I. I've known three people who have had their quality of life severely impaired by psychiatric medication.



I hope so! I've fancied working in Canada since I was an undergraduate- I have some (step) relatives in Vancouver as well. I've been told that the job prospects for environmental scientists are quite good too. Canada is a wonderful country, with REAL winters. You're lucky to live there!

Hi

I am undiagnosed - moving towards self-diagnosis may be with eventual professional diagnosis

Although I am not a mental health professional, I have some experience through my work as a lawyer and academic, with Freudian analysis. I would recommend that you ask your Dr why he/she is recommending Freudian analysis (I imagine it is because the Dr has decided that your adult distress comes from your childhood experience - which is a classic Freudian analysis) - there are different types of available. Your Dr may not even mean Freudian - he/she may be using it a layman's short hand because everyone knows who Freud is. I believe that Freudian analysis is usually long term.

As far as I am aware although Freud is still considered the father of psychology many of his theories are, in more contemporary times, discounted. In fact Jane Ussher (Lecturer in Psychology Sussex University UK) suggests that students of literary theory rather than psychology are more likley to study Freud - I think Freud remains more popular in the US than the UK. This trend is rising with the increase in female mental health professionals who are less willing to accept his arguably patriarchal viewpoint (eg 'Penis envy'). Freud's case study of 'Dora' highlights some of the problems. Dora father's friend attempted to seduce her and she reacted with disgust. Freud comments:

"I should without question consider a person hysterical in whom an occassion for sexual excitment elicited feelings that were preponderantly or excessively unpleasurable".

I don't think it is an unnnatural reaction to find find you father's friend coming on to you disgusting...and Freud here seems to have no comprehension that a woman is able to make up her own mind about whether she is sexually excited or not and is not sexually excited because a man is. Blaming Dora for her reaction can be seen to be a way of controlling women. However, I read Freud with a distinctly feminist analsysis and as a non-mental health professional...and this is just my opinion.

Like Freud, in the above case - your Dr does not seem to be listening or communicating with you and I wonder whether you should seriously be considering obtaining a second opinion. As far as I am aware often mental health professionals recommend obtaining second opinions.

What ever you decide I wish you luck and hope you get a diagnosis that helps.

Jelly

Hi Jelly, I agree with you about Freud! As for second opinions, it doesn't seem to matter who I see, they always dismiss the possibility of Asperger Syndrome, possibly because I don't conform to whatever stereotype they have in their heads (I don't think being female helps, either). I'm going to try to see someone who actually specialises in Adults with Asperger Syndrome, although I don't know if that'll be easy.

Thanks for your comment, and I good luck with your diagnosis.

You commented that you were not withdrawn until university. You said that you ran into difficulties for being the exact opposite of withdrawn. Not all aspies are socially withdrawn. I live with a diagnosed aspie who is very outgoing and gets himself into trouble for it. It is true that many doctors have stereotypical views about Asperger's. You seem very aware of all the pitfalls for obtaining a diagnosis and I hope you find the right doctor.

[quote="anandamide] Not all aspies are socially withdrawn. I live with a diagnosed aspie who is very outgoing and gets himself into trouble for it. [/quote]

Thanks Anandamide, In a way, I think the withdrawn ones may be the lucky ones. I have a doctors appointment today, so I should get to know when and where my assessment is.

I think the eye contact problems people with Aspergers often have is more unessential eye contact, although whether it's because I'm Aspie/NLDer & my judgement of what is unessential is "the norm" or not, I don't know. I feel it's pretty unessential to have eye contact with a cashier at a till but feel NTs think this is pretty essential unless in great hurry. I feel eye contact when an acquaintance is introducing you to a friend of a friend whom you'll prob. never see again is annoying & nonsensical but still do it out of "common courtesy", whatever that may be! I think it's also about uncomfortable eye contact when "forced" into mixing with several people at once (a crowd or a party gathering), I think that's when I feel least feel like eye contact. To be honest though, even day to day acquaintances sometimes make me feel uncomfortable when they are trying to engage me in conversation & eye contact at same time (I cannot take in what they're saying most of the time).
Bye the way, have you ever had an IQ test done? Has anyone mentioned Nonverbal learning disorder? Not sure whether this & Aspergers are one & same but the difficulty with shoelaces (motor skills) & maths (visual/spatial skills) ring a few bells for me.

The criteria for non verbal learning disorder doesn't include obsessive interests, does it?

Hi Mullion, Nobody's mentioned Nonverbal learning disorder, I'll look it up. I did have an IQ test done when I was 10yrs old. The overall result was above average, but there were huge differences between the scores I got in certain areas (my Mum can't remember which ones). The social worker who gave me the test had over 20yrs experience at the time and said she'd never seen more uneven scores.

I know what you mean about eye contact. I don't mind the "common courtesy" stuff, as I try pretty hard to be decent to people. I've worked as a casheir and know it's a good thing when you get a customer that's polite. I think I'm ok on a one-to one basis, but in a group I tend to "zone in to" and focus on one person, so I have difficulty switching between people or realising when someone else has started talking/ is trying to join the conversation. Because I am aware of this, I try to anticipate

I have looked up Nonverbal learning disorder, and the many of the symptoms definately do "ring a bell", but my difficulties are not as severe as the accounts of it I have read. I will definately mention it when I go for assessment. Does it have a spectrum of severity like Aspergers and Autism?

Re. nonverbal learning disorder, severity is normally classed as 20 or more points difference between verbal IQ & performanceIQ on a standard IQ test (Normally a Weschler). Not sure if worth having done unless affects jobs or for children (v.relevant for school age). My daughter has 40 points between verbal & performance IQs, which along with lack of eye contact I am told is Aspergers or severe NLD whatever you want to call it. I think Asperger is more appropriate really. Another Mum I've become acquainted with has son diagnosed with Asperger & NLD & he has approx. 30 points between the two IQ scores. My daughters' a carbon copy (neurologically - not personality-wise) of me so I think if I was tested I'd be somewhat identical in profile.
I am in UK so only have no relevant leads for US - perhaps someone else can help with the nxt step to a possible Aspergers referral.