What is diagnosis for? What does it mean?

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I have been reading Tony Attwood's Complete Guide to Asperger's Syndrome and I am now very confused about the meaning and purpose of an AS/ASD HFA (Aspergers) diagnosis.

On the one hand there are ideas like this: "Some girls and women with Asperger’s syndrome, and adults of considerable intellectual ability, can be more difficult to diagnose due to an ability to camouflage their difficulties."

This suggests that a diagnosis of Aspergers may be appropriate even if the person being assessed has the ability to conceal their differences from NTs.

And also: "The diagnostic assessment should not only examine areas of difficulties, but also areas of ability that may be attributable to the characteristics of Asperger’s syndrome. For example, the child may have achieved prizes and certificates for his or her knowl- edge regarding a special interest, or demonstrated academic skills by winning a mathe- matics or art competition. The person may draw with photographic realism or invent computer games. Parents can be asked for the endearing personality qualities of their son or daughter, for example being kind, having a strong sense of social justice, and caring for animals."

This seems to indicate that positive qualities of Aspergers can play a role in assessment--The diagnosis is not just an official recognition of a group of pathologies and disfunctions.

But then:
"Some adults referred for a diagnostic assessment may have the signs but not the clinically significant impairment in functioning necessary for a diagnosis using the DSM-IV criteria of the American Psychiatric Association. Problems with social understanding may be reduced to a sub-clinical level with the help of a supportive partner who provides the necessary guidance in the codes of conduct and explains or repairs comments or actions that may appear confusing or inappropriate to other people."

OK, so if you compensate well an have good coping mechanisms, then you don't have Aspergers?

But:
"However, should the person experience a divorce or unemployment, the signs may become more conspicuous and then warrant a diagnosis. It is perhaps not the severity of expression that is important, but the circumstances, expectations, and coping and support mechanisms."

And

"The qualitative impairment in social interaction or social relatedness is central to the diagnosis, but there is no weighting system for the other characteristics to help decide whether, on balance, a borderline case should have the diagnosis. The ultimate decision on whether to confirm a diagnosis is based on the clinician’s clinical experience, the current diagnostic criteria and the effect of the unusual profile of abilities on the person’s quality of life."

I don't understand. I thought this was either you have it or you don't--not you don't have it when things are going well, but then do have it when things go badly and you fall apart. I am totally confused now.

Not sure that it matters, since my wife is finding the descriptions of it helpful in understanding me and our children… but I really do wish this was a clearer picture.

Is the diagnosis a means of discovering a fact about a person's wiring? Is it mostly about treatment and accommodations? Can it come and go with turns of fortune in a person's life?

From what I've read, generally speaking only people that are experiencing difficulties due to whatever their symptoms are supposed to be diagnosed. You know how sometimes idiots say things like, "BUT IF YOU LOOK AT ALL THE STUFF IN THE DSM, EVERYONE CAN BE DIAGNOSED WITH SOMETHING." That's true in the sense that even healthy, happy, relatively normal people might show some slight tendencies towards one disorder or another. But while someone might be a bit of a neat freak, it's not really full blown OCD until it's causing them distress and interfering with their ability to have a happy life. Similarly, everyone's got their ups and downs, but you're not bipolar unless you're swinging wildly between manic states and depressions and having problems as a result.

That's my understanding, anyway. So given that, the bits you quote before and after what I quoted are maybe the important bits of what's tripping you up.

What it's saying is that the underlying brain wiring that presents as autism is always there. However, whether it warrants a diagnosis depends on whether it's "clinically significant," ie: whether it's a really serious problem for the person in question (or perhaps was a problem for them in the past before they learned coping mechanisms).

Also, while the underlying brain wiring is always there, it may not always be apparent to the person looking for signs. Little kids get diagnosed when it becomes apparent that they're having social troubles, or sensory issues or whatever. But people that make it through to adulthood without a diagnosis for whatever reason... Some people learn to hide their difficulties, which can make determining the real prevalence of autism's symptoms more difficult. Other people have someone in their life that helps them and they're mostly doing okay. But in other instances, a traumatic event (divorce, death, whatever) can really interfere with or destroy those coping mechanisms.

That's how I understood the bits you quoted when I read the book.

Personally, I think the 'clinically significant distress or impairment' bit, for lifelong conditions, should count past distress or impairment even if you're doing well now. I mean, if you're a college student with AS, and you get along fine with your classmates in engineering, but you were bullied constantly as a kid, that should count. Particularly since someone like that is likely to run into more trouble when they graduate and start looking for a job.

I'm not a psychologist, but I'd be really surprised if it didn't. For autism/asperger's, they're interested in what you were like as a kid (to the point where they want info from a parent or someone who'd know). And also, the effects large and small of that sort of thing can be pretty long lasting, especially if it was particularly vicious.

In talking to my wife, I am beginning to suspect I am not as successful at being NT as I thought.
My personal oddities seem to fit the pattern quite well, despite all my efforts.

In any case, thanks for your replies--I still find some of the details a bit confusing in that they seem somewhat self-contradictory, but perhaps I will resolve these matters during diagnosis.

That is a pile of crud basically.

How on earth can having a partner who is helping you, change the fact that you have an ASD that needs diagnosing?! If you need the partner to help you then clearly it is a problem.

To compound this by saying:



Is even worse. You cannot measure how autistic someone is by their personal circumstances in that way. Someone could be married but totally dependent on their partner, but they are still married, so are then not autistic enough to get diagnosed? That same person in different circumstances, having to rely on support services because they did not marry and have that support, would then be eligible for a diagnosis. No, that's rubbish. You can be in a miserable marriage because your partner doesn't understand Asperger's or you made a bad choice of partner due to not understanding whether that person had the right characteristics or something.

That's like saying, someone who had a heart attack that fit all the classic symptoms gets the bypass, but someone else who presents differently (apparently women often do not present with the same symptoms with a heart attack) doesn't appear to be having a heart attack so they don't get the surgery. I know that's an extreme example because it's life or death, but I'm fed-up with minimisation of the effects of Asperger's just because it's an 'invisible disability'.

A diagnosis like AS should provide the opportunity to receive a form of "help" that is usually suited to some of the needs of people diagnosed with that diagnosis and that is usually not available (due to financial or other reasons) to people without a diagnosis or with a different diagnosis.

I always thought of diagnoses as a guidepost (metaphorical) that in my case says something like "okay, hello stranger, nice to meet you and just so you know, this person here by the name of Sora differs from the majority of the population by exhibiting some traits to "extreme" degrees and those traits, abilities and impairments lie in that direction titled "autism" -somewhere over there approximately".

Basically, if I got to deal with someone who hasn't yet gotten to know me, my diagnosis should take away some of the surprise about my autistic behaviours and should help to avoid that he starts misinterpreting perfectly normal autistic behaviours for symptoms of other disorders or for intentional actions.

But even if someone knows your diagnosis of an ASD and even if that someone knows about what autism can be like, there's no guarantee that they don't misinterpret autistic behaviours for something else or that they misinterpret normal behaviours for autistic behaviours. A diagnosis usually isn't very self-explaining. That's why I prefer it when people ask me about why I did something I did.

I feel like you're being overly harsh based on a few tiny snippets out of context. Like the thing about having a partner, or some traumatic personal life experience making symptoms more apparent isn't "minimizing" anything. It's just saying that it can be harder to diagnose those who have coping mechanisms that are currently working for them, but that some things that stress or upset people can make those coping mechanisms break down or stop working the way they used to.

Actually, I found the book to be a pretty good general overview. Or at least it was helpful to me when I read it. While he's not autistic himself and so that maybe limits complete understanding of what it's like, the book is generally written from a very compassionate perspective with regard to the difficulties people with asperger's can face in life.

I agree with whirlingmind. No one could have diagnosed me when I was younger because there was no such diagnosis. I was just a bit wierd and learnt to cope very well in life but when things were very bad I did not cope well. If I had known that I had AS, I could have understood why I was not coping during those bad times and hopefully learnt techniques to manage difficult situations. Now I know what is happening and I have some insight into my behaviour I will at least be able to make more rational choices instead of going into some sort of massive meltdown. Or at least I hope I will!

I realize you were responding to whirlingmind, and forgive me if this quotation is also taking your words out of context, but:

That is not actually what Attwood is saying. It's not that 'it can be harder to diagnose' those with effective coping mechanisms and support structures, but rather that the efficacy of those support frameworks makes the symptoms subclinical and means a diagnosis should not be given. Only if the framework is removed (in the event of work or marriage trouble, for example) and the individual becomes less functional may a diagnosis be given.

This is the idea I am having Trouble digesting. Perhaps it's a sign that I have a tendency toward black and white categorical thinking despite my self conception as a very flexible thinker, but it seems to me that if the condition is defined as different wiring, then you have it or you don't and situational factors like your spouse or business associates should have no bearing.

Before reading this section of Attwood's book, I imagined diagnosis was a sort of fact finding exercise about the essential constitution of the patient. Now it seems that all sorts of other factors come in to play and the resulting picture is murky in a way that is esthetically displeasing.

That's not taking me out of context at all, and your rephrasing of Attwood is what I've been trying to rephrase as well. I think we both understand what he's saying to be the same.

I'm not really sure what the roots of the notion of something being "sub-clinical" or why you'd want to hold off on diagnosing someone with something unless/until they're experiencing significant difficulties as a result even if the underlying brain wiring is always present. I'm just a layperson talking about my understanding of the bits you quoted and repeating some things I've heard people with actual training in the field say. That'd be a good question to ask an actual psychologist, I think.

I agree that it's ... messy. I don't really know that it's possible to do better (yet)?

Clinical psychology's been around for, what, 120 years or something? Where physics and biology have been around for much, much, much, much longer depending on when you want to consider them to have "started." I mean, it was just, what, 40 years ago that homosexuality was no longer considered a mental illness? Which is not to say anyone, lay person or expert, should be complacent. But it makes sense to me that things'd be fuzzy given how young the field is, and how little it seems like we know about how the brain really functions compared to some of our other biological systems.

This drives me absolutely nuts. I was told the exact same thing (I don't have it since I have a job and apartment) but when I pleaded with the psychiatrist that I took THREE FULL YEARS to find a job, 29 years old before I could move out and almost 30 before my first girlfriend despite being intelligent, tall and very good looking he said that I might have difficulties but having employment rules out an Aspergers diagnosis. Yes I have coped somewhat for small, familiar situations but try living with me and my Aspieness will be blatantly obvious to you! Of course he had to add it that 'everyone gets bullied' and 'everyone struggles to find work' and of course 'everyone has some autistic symptoms'

I further explained that if I lost my job (extremely unlikely since I'm so well respected but still....), I was pretty much screwed because I have no idea how to find another job and I'm VASTLY overqualified for minimum wage jobs, he said if that were to happen it could be reassessed and I could possibly be diagnosed with Aspergers at that time. I also told him that I already 'receive' necessary accommodations by pure fluke (I have a private office for example and work alone and have an "Aspie-friendly" workplace) but that sailed right over his head. When I was a cashier, I used to have panic attacks just thinking about how am I going to survive a 4 hour shift it was so overwhelming!

Making it more confusing, he said that it's a lifelong condition and you always have it. So, let me get this straight: if I got properly diagnosed as a teenager, I would still have Aspergers Syndrome (or HFA) it but since nobody caught it and I figured it out last year I don't have it? Are you kidding me?


I tried and tried to say this to the psychiatrist and he just changed the subject by saying that Bill Gates and Einstein (who incidentally does a very well paying job!) have Aspergers and that I have the advantages of being able to pick out details that most others miss and to consider it a gift. I do but that doesn't change the fact I HAVE ASPERGER SYNDROME, PERIOD! He then said that he could put down an Aspergers DX but he didn't see the point as it could potentially cause more harm than good at this point, especially with insurance companies. Maybe it's my black and white thinking but I just want a solid yes or no answer.

A diagnosis is for nothing else than to entitle you help.

If you are a kid, enjoy the benefits and the help.
If you are an adult, you get a pat on the back followed by a "there-there", then you get a foot up your ass.

What's this? I don't want to hijack my own thread but I am curious that a medical person would say this. What does it mean? What kind of "harm with insurance companies" could follow from an AS/ASD diagnosis? Did you ask for clarification on what this meant?

If you have trouble working and/or problems at school that are directly caused by symptoms of an ASD, then a diagnosis would be prudent and pragmatic.

Problems with self-help skills would go without saying.

Thank you for pointing out that palindrome is not saying the same thing as I was Adamantium. I think I was crystal clear what I meant, and I gave examples copied from the text as well.