Clinical biases which affect diagnosis accuracy

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What a wonderful interview that is! Thank you so much for finding and posting it for me. How delightful Attwood can be - down to earth, not pompous, not bound by reliance on professional jargon, warm sense of humour, deep and genuine affection for his special interest (Aspergers Syndrome), independent thinker who doesn't solely rely on the received version, and very much committed to disseminating through every venue he can some reality-based and balanced information, not in dull clinical terms 'othering' terms but as in the lived experience of AS people in daily life.

Hmmm perhaps I have an intellectual crush on Attwood! The one your comment brought to mind was my tremendous admiration and affection for a teacher of immense gifts - a former Jesuit (they excommunicated him for too much independence of thought.. despite the traditional Jesuit respect for intellectual endeavour) and I still count myself extremely fortunate to have been taught, encouraged and inspired by him. There was no likelihood of this being misinterpreted (as Attwood says it often is) as he was decidedly gay and I was not; he too developed a similar intellectual crush on me, (perhaps he was HFA, I knew nothing of that possibility at the time, neither would he have). We just really liked and rocked to each other's minds.. what Attwood so mischievously refers to (with a smile) as an 'intellectual orgasm'.

I can certainly see how this can get misinterpreted though. I can recall the occasional mature female student seeming to have a similar crush on me, though not expressing it until the end of the course year when they were leaving; though perhaps this was because I was easier age-wise for them to identify with than the much younger students who made up most of the class.

Another issue in this fascinating interview (thank you especially for this bonus) was what T.A. had to say about variation to the usual pattern of normal distribution (Bell curve) in terms of Aspergers populations. The idea that the Bell curve explains every population is generally entrenched - a sacred cow; yet here is Attwood saying that from his observations, the tails at the ends of the curve (which usually contain only small numbers of subjects - ie as in height, the extremely tall and the extremely short in normative populatoions) are different for AS because the tails contain much larger numbers - this would mean that the fundamental dynamics of the population are intrinsically different from the ideas in 'received knowledge'. Well you have made my day APOM! I frequently think of your recovery, hoping you are progressing really well and it is great to that you sound as buoyant as ever.

IMO, certain biases and assumptions will always go along with an ASD DX (or ruling out of ASD as a DX itself), as there is no physical/chemical test for ASD. Even within the specific criteria, those criteria are generally based on observation and/or input from the individual him/herself and on the part of others (i.e. teachers, parents). This input will certainly influence how the diagnostician sees the patient as fitting into the (sometimes vague) criteria, or not.

In fact, this can even happen with conditions for which there ARE chemical tests, but assumptions are made regardless. For example, my littlest son had an ongoing cough with a specific sound to it. The doctor said he had pertussis and did not need a blood test. I argued that my son was up-to-date on his pertussis vax and boosters. Her counter-argument was that a certain percentage of vaccinated children will get pertussis regardless of the vaccination, and that all his clinical markers matched.

Oh dear - it is obvious from what happened on this thread yesterday and today that when I post a reply via the "reply with quote" tab, my reply comes on as a continuation of someone else's post.. the mods don't know why this has happened, and I am really sorry for any confusion it has caused.. I will stop quoting posts on this thread and that hopefully will end this annoyance.

Thank you for that useful advice Eloa, I will certainly do that now. The net is sometimes a very humbling experience for me (that's probably a good thing) because sometimes the obvious and simple solution (such as your suggestion) doesn't immediately occur to me.. the contrast: I can be quite able in some areas of life and so challenged in others.. ah, the human condition!

This post of mine was wrongly attributed to a post by ThatGuyWhoWearsEyeliner earlier today:


One thing that the formally and informally diagnosed have in common is a lot of unhealed shaming in the pre-diagnosis past. (NB: I don't want to debate lexicology in this thread and have no intention of doing so yet again). Shame is the most difficult past, stored trauma to heal because generally, people are ashamed of having been shamed and too ashamed to reveal the depth and intensity of those powerful and heavy feelings. Any kind of validity which mitigates those internal feelings and memories of past shaming is likely to be fiercely asserted and defended.

The sad thing is that when people bury unhealed wounds of great intensity, they tend to do to others precisely what was done to them, though the topic or context may be different from the original. I think you could fairly safely say that nearly all people on the spectrum whatever their status have experienced very significant levels of past shaming compared to neuronormative populations, with one exception perhaps being children who grew up in daily punitive shaming religious families who believe that children are born evil and it must be purged out of them from the start. Kindness, validation, acceptance and understanding heals old shame. I wonder what the effect of past shaming is on clinical encounters and the outcomes of these.

For those who were too lazy (as I was until now), to click that link...

You make very interesting points Apple.

Re your last point: as I have intimated in a post on this page, I have areas of high function and others of low function - so does everyone else, and that's one of things that Tony Attwood also takes issue with, this rigid dichotomous labelling of people as high and low function. I also take issue with neuronormatives being rigidly categorised into positive or negative groups - ASD people certainly don't seem to have the corner on black and white thinking!

Yesterday I was watching a video of a young woman named (I think) Carly Flieschman (?spelling) who was basically written off in infancy as being so low functioning as to have no life prospects at all, who blossomed in astonishing ways at age 11 showing remarkable ability that had been completely missed by the clinicians up to then...

What happened to me is ridiculous, actually.

I finally got diagnosed. But...
First I self diagnosed. Then I went to autism specialist with a 20pages long essay about my symptoms and she said I indeed have Asperger but she cannot diagnose me (what the hell?).
Then I went to a psychiatrist. He thought I am attention seeking and didn't believe me (according to my mom - I didn't see anything odd in his body language) but it didn't stop him from asking me if I want some medicine (what the hell?).
Eventually he send me to a familiar psychologist. Ignoring the opinion of autism specialist and a few psychologists I talked with before.
BTW: They didn't diagnose me with anything other than "high inteligence" and "immature personality" (what the hell?).
The psychologist said he knows what Asperger is but he failed to ask me things directly related to diagnostic criteria and when I mentioned stuff that were classical examples he asked me if it is related to Asperger anyhow (what the hell?). Eventually he decided I have Asperger based on my inability to correctly answer "How are you?" question. Apparently I was the only patient he ever had who had no idea what to say. My mom said he was probably learning about Asperger after meeting with me, using "dr. Google".
I returned to the psychiatrist having psychologist opinion. He read it and said "You have to wait till next meeting because I am not allowed to diagnose you after 1 visit but you are going to get the confirmation about Asperger next time.". And soon he added "Want some medicine?".
WHAT THE HELL?

How am I supposed to trust a diagnosis like this? And the medicine... is a doctor supposed to ask me if I want some medicine? He should decide if I need it or not! I doubt mental health drugs are supposed to be something patient wants-patient gets...