Missed Diagnosis: What the Doctors said to patients

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I love your sig, Noca. It gave me boost.

Apart from receiving multiple diagnoses for depression (a common mistake in the 1970s and 1980s when autism was largely mistaken as depression) which I challenged and denied, I have written elsewhere on WrongPlanet.net that my first assessment of autism was a train wreck in several ways.

What stands out about it was that my diagnostician told me in the first five minutes that "when anyone shows up at our clinic wanting a diagnosis of this or that, we usually just diagnose them with anxiety. It seems to satisfy them." Well, two weeks later, she diagnosed me with Generalized Anxiety Disorder and Obsessive-Compulsive Personality Disorder. She said to me (and wrote in my written assessment report) that I couldn't be autistic because she hadn't seen any evidence of it, though she quoted several of my autistic descriptions and described her own notice of my autistic behaviors and characteristics.

Nineteen months later at my second assessment (at a university ASD clinic), my diagnosticians actually apologized for the previous diagnostician failing to see the obvious, and named several examples in her written assessment report that should have screamed an autism diagnosis. For me, the best part of getting my diagnosis right was because I was previously dismissed despite the evidence.

Oh, I should mention what my recent therapist said; 'but you have great eye contact'. I told her that's not always the case. She also believes that all autistics are tidy. Fortunately, she is aware that's she's not an expert, so she's reserving judgment. Considering that psychologists usually know more about autism than doctors, I think a lot of doctors should follow her example.

I grew up with lots of support from my family, peers, parents, teachers, and pastors. No one knew that I had autism or that what they were doing was exactly what I needed growing up. It was just so natural. So,

I made it to ~20 years old before I had my first bad autistic burnout. I saw a psych doctor (or psych student?) at my university's mental health services, once. He was not very helpful.

I was able to push myself to continue until ~25 years old when I had my second, worse, autistic burnout. I saw a psychotherapist for several sessions before I realized she was not going to do any testing and I had done enough "self-reflection".

Finally, at 30 years old, I found a whole team of specialists to do comprehensive neuropsychological testing over several months. They diagnosed me with Autism.

Later I went to see another doctor about something else. He was not a specialist; I was not asking about autism or anything autism related; he met me only once for a minute or two; during this short time, I made no eye contact, did not speak (my sister spoke for me), and stimmed constantly. He said I could not possibly have autism, because I could not possibly have gone 30 years without being diagnosed!

Sadly some of the doctors responses were not wrong. There is little or no support for diagnosed older adults and the stigmas of bieng openly autistic can harm you in the working world and in some cases will be used against you in a custody case. The prevoius statement in no way implies that I agree that people should be dismissed if they want to be diagnosed.

Ironically some of the clinictions that implied or said you are probably autistic but a professional diagnosis is harmful or worthless are justifying self diagnosis.

It behooves us not to criticize people or groups for how they decide to act on thier suspicions and make the best of what is often a no win situation.

After moving, I went out to find organizations who offered autism services in my area. During an interview with one, they told me that they could not help me because:
they only helped autistic children...
or adults with mental illness...
and, "besides, you are pretty."

What does being pretty have to do with this situation?
What?
I am pretty, so I cannot have autism?
OR
I am pretty, so I cannot need services?
OR
I am pretty, so none of it matters?

Anyone here never not been told by a doctor they couldn't be autistic?

I have never had a doctor question my diagnosis to my face.

In the last few years it has become fashionable to criticize people for congratulating people for receiving an autism diagnosis. Even if you think autism is a curse it is ok to congratulate somebody for overcoming all these obstacles to get a diagnosis. Instead of congratuations you get accussed of doctor shopping or having a factitious disorder or wanting to be trendy. Many times it takes behavoirs that mimic people with factitious disorders in order to get a correct Autism diagnosis.

Priceless

Appalling, unprofessional and sexist.

Do we know what percentage of these answers came from people who don't have a diagnosis but only self-report to be autistic? Cos....that might make most of these doctors right, no?

Whilst there are certainly some silly things in there, not all of them are as bad as you may think. Regarding the "but you do well at life" responses...to be autistic you need to be significantly impaired in some way, if you have friends, good relationships etc then, sorry, but maybe you're not autistic? And while there seems to be a fair few responses where people are being put off seeking a diagnosis you have to remember that a diagnosis isn't a cure. It's not like being diagnosed with a disease that then means you get the medicine. If these are from America it might cost thousands of pounds to get a diagnosis so maybe the doctor is just trying to strike the right balance for that person. Is spending thousands going to be value for money? Ditto there are often few or no support services for adults in an area so the doc may be considering that also. Finally, autism is a developmental disorder so it is much harder to diagnose adults and maybe the doctor is keeping that in mind too.

Something else, we are all denouncing snap judgements where doctors are saying the patient is not autistic, but what about the cases here where a doctor has made a snap judgement that someone is? Is that's just as bad? No-one can give a snap judgement either way so why is one pilloried and one congratulated - aren't they both quacks?

There's a faint hint of "generation me" here, where people do some googling, march into the doctors and demand to be humoured and to be diagnosed with whatever a quiz has told them they have. It's no different from the army of people visiting the doctors every day demanding antibiotics or anti-depressants, or whatever else their entitled little minds think they should have.

Certainly here, where I live, psychologists do know much more about autism than doctors. There is no training in AS for doctors here, in their general medical courses. However psychologists who choose the clinical training option in psychology, after completing Masters, are well informed, at least those trained in the past decade or so. Some choose to practice only with adults, not children, and seem reasonably aware of differences in gender presentations. No doubt there are some duds, but that is always so in any field.

I have heard reports from AS people here of the same frustrations with doctor ignorance, but none about the psychologists (so far).
The psychologists practising with children tend to be behaviourists, unlike the other group.

I've had a similar experience around ten years ago when I saw a psychologist for several months. The initial snap diagnosis was social anxiety which I wasn't comfortable with as I didn't fit the DSM symptoms fully and felt that there was more going on. We discussed the more serious disorders and I mentioned that autism spectrum disorders felt like the best fit for me but the psychologist basically laughed at the suggestion and said I was far too verbal to be autistic.
After further research myself I was fairly convinced I was either mildly autistic or had schizoid personality disorder but didn't pursue a diagnosis at the time.

Ten years later and my life skills are still weak enough to worry me now that my parents are getting old so I pursued a diagnosis. The local GP was very helpful and didn't question my concerns and happily referred me after asking some basic questions. I was just recently diagnosed with ASD level 1 social communication and level 2 repetitive behavior along with moderate inattentive ADHD.

In hindsight, ten years ago I wasn't really self aware enough to express what difficulties I was having or how different my behaviors were from a NT person so I answered all the basic screening questions with NT type responses. Part of the problem is also how these questions are asked, for example do you have unusually narrow interests or repetitive behaviors? My answer was no as I had no way of self assessing what was unusual, to me it was normal.

Because you don't look like 10 miles of bombed out Michigan freeway, no you don't count. Lol....

If you do live in Michigan, my husband tried to get help from a group that has the same/similar mission statement. (SE Michigan).

He was told there was no help because he could do all his activities of daily living. For mental illness to be covered, you almost have to be barking at parking meters.

Basically, if you can eat, dress, wipe your butt and remember to change your clothes once a month, you need no help.

I am struggling with transitioning into an adult.
I am 19 now and tried to seek out a formal diagnosis when I was 14. The psychologist I saw said I might have high functioning autism but it wasn't worth a formal diagnosis and i was told it was social anxiety and depression. I do not want to use a diagnosis as an excuse, but more to have comfort in knowing what is going on. I have tried to change over the years to fit in more and nothing has changed. I have not gotten a second opinion since. I have had developmental issues and delays since I was a child and my parents have always just said I am strange. I've tried to get help since and I don't know where to start.
I feel like I should try harder to be normal and suppress everything, but it's hard..

A possible solution for the clinicians that think I am not going to give you a diagnosis because it will do you no good and may do you harm and self diagnosers that fear consequences of professional diagnosis is what I call an "unofficial diagnosis" . The clinician says in my proffessional opinion you are autistic but nothing is written up. With this method you get confirmation and validation sans potential risk.

The down side of this approach is if you run into to trouble later you are eligible for no benefits and services and might need to get it official at a time when you are more mentally and finacially desperate. But if the clinicion that gave you an "unofficial diagnoses" is still around at least you do not have to start completly from scratch.