Adult diagnosis: do doctors really know what they are doing?

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Excellent idea. I would bet dollars to doughnuts that the diagnoses would be widely different. I already know of one client who had two diagnoses for AS, one emphatically negative, the other emphatically positive.

But if I'm right, the government might respond by stopping all ASD benefits on the grounds that their diagnoses were invalid, and setting up an inquiry seeking a solution to the problem, which would never reach any conclusions.


I don't think it would matter. It would make sense to include people who believed or strongly suspected they had ASD, and people who had already been diagnosed with it, but what we'd be testing would be the reliability of the DX, so if a few NTs were accidentally included, it would still show how (un)repeatable the DX is.

This seems like excellent advice. It's hard to see when you are on the other side, wanting to know, because you obsess over all these details and go through this autobiographical review, asking "if these kind of things are attributable to ASD, then what does that mean about these incidents in my life?" This is personally emotionally significant, but not important for the doctor.

I thought of the many pages of documentation from work that I brought to my assessment as additional detail, but I suspect the information in those annual review reports, etc. might have been more significant to the doctor.

I also believe that what is reported here is probably more realistic than gathered statistics

I have read dozens of comments on here doubting diagnosis and criticising its efficacy (in spite of many doctors being obviously well intentioned). I could probably multiply by 10 or 20 an estimated number the critical posts that I have not yet read on WP as the site has a good long history now.
Could we begin to question the diagnostic paradigm? as a community do we actually have faith in the diagnostic tools and the diagnosticians overall?

Q. what trust would we have.?..

.....perhaps 3/10? should they know? is this not important for the professionals to know this if my estimate is true.

Should we do a survey and feed back to the experts how we actually rate their attempts at diagnosis? surely this would be really useful to them to know the perception of the community if nothing else. If we have a pro or anti perception surely they need to address this?

Last edited by Peejay on 10 Aug 2015, 6:26 pm, edited 3 times in total.

I am coming around to this sad conclusion myself too. That if you cannot show tangible impairment at the moment of assessment then you will not get the diagnosis. the 3 legged dog who gets around fine and has essentially unimpaired mobility will not be diagnosed as a 3 legged dog. The dyslexic with the spellchecker app will not be diagnosed as dyslexic from the written essay submitted.

If your Aspergers is mild yet chronic (affecting you for a life time_ not sever and acute then you do not warrant a diagnosis,

A serious assessment should really be over a much longer period of time )a couple of seperate days at least) to be reliable. However a triage system is usually used to give attention to the most immediate need.

I wonder about this myself. For me, the “amount” of “impairment” most definitely ebbs and flows?

Things seems OK when:
a) I have a job. The work does not require social niceties. I can control what I am working on and the pace at which I work.
AND
b) My relationship with my wife/family is “OK”.

Things seem to fall apart otherwise. Though, I assume that is common for everyone.

For myself, I was diagnosed during one of those “valley” periods. Would I be diagnosed today? I have no clue.

It's more of a case of them doing the best they can with what they have.

Right now the biggest problems are with dealing with adult diagnosis:

1) Lack of research into adults with ASDs. No one has really invested resources and time into doing research into this area.
2) Nearly all resources and help is targeted at children and minors. You lose most of it when you turn 22 in most states.
3) No clearly defined standards for diagnosing.
4) Most adult physicians aren't trained/educated in ASDs
5) Most researchers, psychologists, psychatrist, and others aren't focused on adults with ASDs
6) Government funds in EU, U.S., Canada and other countries haven't been permitted for adults with ASDs, for a variety of reasons
7) There is decent opposition and denial from the public on giving resources and money to fund stuff regarding adults with ASDs.
Adults are very reluctant to get screened for ASDs and other stuff due to reason 9
9) Getting an ASD diagnosis as an adult in many cases leads to family abandoning them, being fired, divorced, and/or losing all friends (this happens with other non ASD diagnosis).
10) Patients aren't comfortable and struggle to explain what's happening leading to a harder time getting diagnosis
11) All of this put together makes it that much harder to properly diagnosis and treat an adult with ASDs.

In my case, I was quickly able to get diagnosed with Asperger Syndrome by my psychologist during my near complete break down after 25 years of falling through the cracks.
Getting the right treatment has been quite hard as I've gone through the prescription roulette.
Finding resources in my state has also been a long hard road too, because nearly everything is geared at children and the adult stuff that exists not many people know of it including my doctor.

Though I do understand that many of the core traits aren't exclusive to ASDs, which can make diagnosing harder.

I think many people want autism to be an identity-based diagnosis when it is an impairment-based diagnosis instead.

^ For several decades I found it difficult or impossible to have 'normal' relationships to other people, and to relate to society and the world generally in what most people would consider a 'normal' way. It is extremely likely to me that this is due to my being somewhere on the 'higher functioning' end of the autistic spectrum, though I don't have a diagnosis.

Over the last few years I have chosen to withdraw from the world of social relationships and careers, and participate in life as an 'observer'. This is not ideal, but I think it may have helped preserve my 'sanity', such as it is. Would an assessor consider me to have 'impairments' in my present situation, given that I can cope with it fairly well?

The identity "element" when it was somewhat in vogue was a self treatment technique in lieu of little else for available for adults. Now in the DSM 5 era the "identity" idea with the exception of separatists/supremacists has largely been de emphasized. A possible promising opportunity wasted.

This is an interesting distinction. I did some questionnaires recently by sociologists that used that sort of identity language. I found it troubling.

It may be that social groups construct some kind of identity around autism and project or impose this on autistic people. It may also be that autistic people construct some kind of identity around autism and imagine themselves in relation to that identity. But autism is not a social product, it's a neurological pattern with a basis in genes and gene-environment interactions.

The idea of "constructed" identity bothers me because it puts autism in the realm of literary critical theory that I think of as largely BS (e.g., semiotics) and undermines the idea that there is any real meaning behind the label.

The idea of an impairment based diagnosis also seems wrong in some way because it says that the underlying physical reality is not as important as its impact. I can understand the practical necessity for this, but it seems unhelpful in trying to understand reality. Since the goal of healthcare providers is practical, it makes sense that they use these standards.

It seems inevitable that the full genetic and epigenetic basis of autism will become known and blood work will replace behavioral inventories as the primary diagnostic tools (which will end a lot of the "do they know what they are doing" situations,) but the question of "who needs services" will still be based on impairment.

Autism is currently defined mostly through behavior and diagnosed based on behavior and impairments.
The next step to define autism by cognition and brain function.
There is a smaller gap between understanding of behavior vs. cognition/brain, compared to the larger gap between behavior vs. bloodwork.
In order to help autistic people develop, it is cognition/brain that must be targeted to develop cognition/brain for adaptive functioning in the world, esp. in HFA, which is not caused by any single mutation like Rett or Fragile X and does not have intellectual disability.
The behavior/cognition/brain profile of HFA is a continuum into the general population, so it is the people who have more and stronger traits to cause impairments who would be diagnosed for support and accommodations instead of people who have less and milder traits who don't have impairments.
I think autism as identity is not good, perhaps people who use it have a weak identity to begin with and need some other thing like autism to identity with.

Interesting. I had the impression that post-GWAS gene interaction studies were progressing faster than understanding of cognition, and gene screening might be coming sooner than brain scans/cognitive tests as reliable indicators. It's good to hear that work is going well in behavior/cognition/brain studies.

I really believe there are multiple causes for autism (even without another co-morbid genetic/chromosomal element).

Eventually, as the research proceeds, I believe there will occur a type 1, type 2, etc" sort of situation.

One, say might be caused by a mutation which leads to an enlarged amygdala. Another might be caused by a mutation which leads to accelerated brain growth from 0-2 years of age. Another might be accompanied by digestive symptoms.

The problem with genetic studies is that genetics of autism is based on behavioral definition of autism, which is too broad and includes too many different things lumped into one. There may be lots of genes identified as linked to autism, but it is hard to replicate these findings in other populations used in other studies. It is unlikely that genes and bloodwork will be used to diagnose autism in near future, because the findings are too shaky to apply to individuals. Genes are even less useful in HFA not caused by single mutation. Brain/cognition is more likely, as more specific definitions/subtyping of HFA can be made using brain function instead of behavior.

What is an "identity-based diagnosis" ? I always thought the diagnosis was based on impairments, with points deducted for good coping skills to facilitate the denial of benefits and services.

If you can't get a referral from your GP you need a new GP. Where I live, over the last 10 years, that's cost between $300 and $500 a pop, with it being a coin flip as to whether the next one was going to be a dud, as well. "We can't tell you anything until you come in. (And that's going to cost you $350)."

I know this due to having to pay that much 10 times over about 15 years for problems that didn't get better until I figured them out and pushed for the right tests. I was lucky to be able to entice a cardiologist with paying everything out-of-pocket because I couldn't get a referral to one. (And yeah, the EKG proved me right.)

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I didn't say anything about identifying or relying on untrained people. My point is you can't really rely on anything. You want a kind of certainty that I don't believe exists. When I was younger (teens) I had a very hard time with ambiguity and uncertainty. I wanted absolute truth, but came to realize that outside of math & religion it rarely exists (and is often really expensive). I've had no choice but to get comfortable with not knowing "for sure" about many things. That's just reality.


Yes, it's good idea, especially since you have nearly no other choice than that gateway to access assistance. But if you think things like (as I've seen people on this board suggest) that you should never question them, or even volunteer symptoms(?!), or wonder if they're not f*cking up in some ridiculous way that you would never allow yourself to if you were them -- then you're a fool. You can't count on them that much. If their truth and your truth match, then great. If they don't, then maybe your wrong, or maybe they f*cked up. Who knows.