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

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Hello all.

My premise is this:

Aspergers experts are not able to RELIABLY diagnose experienced adults without developmental info unless their traits are really obvious or severe.

They may get some right, some wrong but there is no reliable diagnosis for ALL aspies.

To support this:

1. Aspergers is a extremely new area of research, it is still very contentious even amongst professional experts who often disagree. So we are in the trial period.

2. The absence of developmental info is a major problem with DX for experienced adults.

3. It seems that along with tests a lot of diagnoses are made on the `gut` instinct of the doctor and may differ one to another.

4. Masking (or `scaffolding`) of symptoms by adults who may have spent 20, 30 or 40 years learning to pretend to fit in will confuse diagnosticians into thinking the client is coping well.

5. The tests are written solely by NT`s

6. Test Q`s are often vague or irrelevant...I can often answer both yes and no to Qs....
eg. would you prefer to go to a library or a theatre?
A. depends what is on at the the theatre?, How large is the theatre? the day of the week; my mood & stress level on that day etc...

7. Even the DSM is not sure where Aspergers sits in ASD ... expect more change in DSMs to come.

8. Severity level is used to diagnose measured on impact in everyday life.
If the impact is not severe enough and support is not required = No diagnosis given.

I receive support from my family and the aspie community, I don`t need `medical`support ....so therefore I may not officially be diagnosed as having Aspergers?
(I am just about holding down a good job, I have a very tolerant and loving wife and appear superficially quite `balanced` until you spend a little time with me . But it has not always been this way, my past is littered with social disasters, people at work think I am a bit strange and I still cannot maintain friendships to this day.
Also it is really challenging and stressful work for me to hold myself together day to day, this affects my whole existence.

9. My symptoms only leak out at certain times, often under stress, which the Doctor may not witness at all.

10. Theoretically contentious current issues like are many aspies actually hyper-empathic not un-empathic. Complicated co-morbidities.

Basically I am proposing that if you are mostly (superficially) coping, and are at the more `chronic` and overall less severe end of the spectrum, if you like many of us have a lifetime of experience, then diagnoses will not be consistent or reliable within even a small range of different practitioners.

I know they may be trying their best, but do the experts really have a reliable enough set of tools in this very new area as yet ? to reliably diagnose experienced, skillful, smart adults; can they reliably do this in the absence of external or developmental information within a short assessment slot?

Does anyone think the new-ish AAA test for adults is any more reliable?

Last edited by Peejay on 30 Jul 2015, 9:21 am, edited 1 time in total.

The answer to that, in my opinion, is "sometimes."

It's better to go to somebody who specializes in autism spectrum disorders, if at all possible.

Yes Kraftie, thats exactly what I mean ......` sometimes`.

(p.s. I am not saying this is not useful or helpful to many people, but a missed or wrong DX can been really unhelpful to many others)
PJ

Psychology/Psychiatry are voodoo sciences at best. When something can have easy-to-miss signs of being present in a person, the doctors are guessing at best...unless they can have a long period of intense observation of a subject...which is prohibitively expensive for most everyone.

I did that for years and ended up breaking down quite severely. I don't think it's healthy to mask all the time. I suggest actively trying not to. There is nothing wrong with natural autistic behaviour.

No they don't.

I think there are many experienced diagnosticians who can quickly identify autism by observation alone. They may want some confirmatory details or details useful in differential diagnosis, but they pretty much "know it when they see it." I have been told this by five different diagnosticians in almost identical language.

There are edge cases which are harder and there is an error rate--I think this is almost universally acknowledged by diagnostic professionals.

I don't know about the AAA--is it used much? Have the issues it was designed to address changed in the context of the DSM 5 ASD definition and supporting language among ICD users?

Until the etiology of autism is better understood and there are blood tests or brain scans that can reliably diagnose autism, the interviews, questionnaires and expertise of diagnosticians will have to do.

The theatre and museum questions were vexing for me too and some of the others.

Try not to focus on the questionnaires too much - they are only a tiny part of a proper diagnosis. Afterall it would be easy to fake the "correct" answers it's not rocket science!

I agree with the OP. I would also add to the reasons why the DX is unreliable:

11. A large part of the procedure is pure self-assessment, and this info isn't usually checked.

12. Diagnosticians don't always care if they get the answer wrong, because they don't usually get into trouble for it, they still get paid. Even when a diagnosis is overturned by a second diagnostician, there's no investigation into who screwed up.

13. There's no warranty given with a diagnosis. No warranty usually means that the product / service isn't very reliable, else why not give one?

ASDs are a clinical diagnosis. There can be no reliable test because the cause is not understood, indeed plenty argue that all people show the odd ASD trait here and there. Diagnosis is not about being a member of the "ASD club", it's about is your case severe enough that you need specific help or not? That's all the label is about. This is an arbitrary decision yes, but one I think is not particularly controversial.

Last edited by thewheel on 30 Jul 2015, 1:02 pm, edited 1 time in total.

This in itself is a somewhat aspergian response, I think. A good diagnostician will probably note that.


Given the speed of advances in medical research, now fully involved in the general growth curve of digital and microelectronic technology, rapid change in the understanding of ASDs is inevitable. Nothing is even remotely static now, so the best that can be done is always a compromise between the established but incomplete and sometimes erroneous clinical knowledge of the past and the insights of cutting edge research. It's OK for diagnosticians to their best despite imperfections inherent in the situation.


Support is support, if you discuss the nature of the support you receive, the diagnostician should note this in your records and include it in calculation of the severity. I have heard this from a psychiatrist and a developmental neurologist. There may be some diversity of opinion about this, but they agreed that needed support supplied by family or friends is still support.




Is it possible that your symptoms only become glaringly obvious and undeniable at those My experience and research into this suggests that the signs of autism or aspergers are more apparent to trained observers than the autistic person may suspect. I spent decades unaware of autism and trying as hard as possible not to stand out too much or be too weird, and yet the people I disclosed to were unsurprised by the diagnosis I found shocking. The doctor may perceive aspects of your behavior that you are not aware of.

Yes, I agree with this.

If ASD was overly diagnosed to people who can still 'get on' in life, is there then a danger that people like me will begin to be compared to people who can function relatively normally and be accused of using the label as an excuse not to overcome the problems associated with ASD (at least in public) like other people on the spectrum do? I guess that already happens to some degree, but could this become a real problem if the net was cast too widely?

In my case diagnosis as an adult was reasonably straightforward because I've never been able to hold down a job, I have no qualifications because I wasn't able to cope with the classroom environment (I would walk out of school and go home), I don't socialise at all, I've become estranged from the family I grew up with because they found me too difficult to deal with, and because my gross motor skills are affected I'm not able to drive or ride a bike (I also become extremely anxious about using public transport, so I can only walk to places unless somebody else drives me there). So the impact of the condition on my life is fairly obvious.

It goes deeper than that. I've finally gotten Kaiser to help me with my autism only to have another doctor at Kaiser refuse the drugs I've been using for a long time to sleep. His experimenting with my life has caused me to be unable to follow through with appointments to address my autism. The left hand is pushing the right beyond my reach to the point of making my continued existence perhaps not worth continuing with. I think many doctors believe they know everything and we just need to do what they tell us to do. Medicine needs to be a two way street with serious consideration for the needs of our lives, not theirs.

Answer : NO , THEY DON'T.

As a person who's Dad is a doctor, I know this very well.
Doctor's are some of the biggest hypocrites in today's society.

Doctor/Patient confidentiality ? LOL , that's a laugh.
My dad used to joke with me about stupid patients he had, or even "hot" ones.
You know, guy talk.

But anyways, from my experiences of psychologists (and psychiatrists),
most of them really are full of it. They either mis-diagnose you or
don't acknowledge you have a condition , at all.

Many shrinks (and doctors) are very arrogant, ignorant, and dismissive.
The last one I went to was rude, and would shut me up in the middle of my sentences (when describing sypmtoms to him) like I was his dog or something. That really infuriated me and I defended myself. Of course, that's when bully doctors shine their brightest, and blame you for everything going wrong then shut you down, and then send you a BIG FAT bill for their "services".

Doctors in this modern Socialist Era charge for their TIME, not for giving you medical help.
Not for actual treatments.

100 years ago, people would only pay doctors that actually provided a service.
Like an actual cure, treatment, or excellent diagnosis (of whatever ails you).
But back then it was more of a Free Market, and people couldn't force you to pay for sh***y "service", or rude socialist , top-down hierarchical behavior.

This is supposed to be the Nation of Free , Independent, Free Market, Free Thinkers right ?

ya right ...

not anymore

those days are LONG GONE

sadly

I'm not at all sure.

I just went through diagnosis as an adult. It was mostly WAIS-IV and tests of memory. No autism-oriented instruments at all. The opinion (stated to me) was "Those are just questionnaires. I rely on what I can see and observe." Yeah, right, but there' s a lot of stuff you aren't seeing or observing, and aren't asking about, and I'm not remembering to mention until I'm not there. I can sit still for the short time I'm in your office. I try not to rock in front of people anyway, and I'm hardly going to just melt down for no reason in a quiet room with no sound. So after all that, the initial conclusion was well, you're on the borderline, maybe, a little, but -- ...until I volunteered some of those things that hadn't been "observed". Which felt embarrassing and unnecessary. I mean, isn't that what the doctor is supposed to be looking into?

The other thing is -- I'm over 50. This doctor said "If I'd seen you when you were 15, maybe I'd immediately give a diagnosis of Asperger's. But you've developed a lot of coping mechanisms. You just need to work on anxiety, really." Yeah, but that doesn't mean the things I'm covering with coping mechanisms are gone. It means I can pass. (Now ask me if it's tiring and seems pointless sometimes.)

Anyway, in the end I was diagnosed, but I think it could have been much easier for both parties if there had been more credence given to my initial suspicions.

Sad but often true. When I worked in a hospital I used to hear surgeons discussing "hot" female patients they had just operated on.



In the UK we have a free National Health Service, though it's being gradually returned to the free market. My experience of NHS doctors is that they're rarely keen to "waste" time and money. I've also seen quite a bit of arrogance from them. But the service quality is rather mixed. You can end up with a doctor who doesn't give a damn or a doctor who does. Dunno that it's got much to do with socialism though. Despite the gradual monetarisation / privatisation of the NHS, they don't seem to be improving.

I've seen a bit of the USA system, which seems to work via a plethora of insurance policies which have various price tags and benefits. It can be a nightmare for anybody on low income to look for a diagnostician who seems useful AND is willing to accept whatever insurance you happen to have. And even though the doctor gets paid from the patient's insurance, I get the impression that a lot of them still treat such patients like inferiors.

Seems to me that it's always a matter of how wealthy the patient is. In the UK, if you can afford it, you're usually wise to opt for a private doctor and to pay them yourself. You'll not be kept waiting so long and they'll provide services the NHS deems too luxurious. But even then, if you're not assertive and well-informed, they may burn you by pushing services onto you that you don't need, practically deciding everything for you. Opticians are all private now, though the government still pays for basic sight testing. I wear contact lenses, but my optician clearly wants to wean me off them and onto glasses (which would be quite lucrative for him), telling me that I'm too old to wear contacts all day, and that one day I'll have to stop alltogether. The pressure can be hard to resist. My older sister's optician says she can wear her contacts as long as she finds them comfortable, and says he'll sell her glasses if and when she decides she wants him to.

There never was a socialist era. At the most it was half-measure socialism, ordinary people never really got the service that the wealthy got from their expensive doctors. Now that it's in decline and we're returning to a completely free-market world, the non-wealthy will simply lose access to even the bog standard healthcare they once had. There might be something of a minor, transient blip in the USA with the "Obamacare" thing, but I doubt it will achieve anything like the serious, permanent equalisation of access to good healthcare that genuine socialists would like to see. I think all you'll see is a bit of window dressing from politicians who are keen to secure votes from the underprivileged.

I think a lot of doctors "know what they're doing" allright - they're maximising return on invested labour, by whatever means they can get away with. But, like garage mechanics, there are still some who are relatively honest, and some of them are even competent in their technical skills. It's just hard to tell the good from the bad, except by trial and error, which can be expensive, and when it comes to your mind and body, it can be fatal.

Yes, I think this is the point, a diagnosis is NOT about the issues but about whether you need help coping with the issues.

However this is more about provision of services and cost than true categorising diagnosis surely?

EG. I have seen a number of dogs cope really well after losing a leg (tripods), their mobility seems fairly un-impared and they appear to continue to live a full and happy life.

According to the DSM etc they would not be `diagnosed` as having a missing leg because they are coping well and would not rate levels 1,2 or 3 on the severity scale.... Am I missing something?

I don`t want any resources , just to learn more about myself and grow on my personal life`s journey.
Being able to read the right books to learn means I need to be able to look on the relevant library shelf!