What does Diagnosis *Really* Mean? [sorry, slight rant]

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Diagnosis is really just an assertion of probability at best, right?
When I was diagnosed, my mother said that it made sense. In fact her recounting of my early childhood was part of what led to the diagnosis.

Years later she said, "I don't think you have that" and "that was just something they said so you could get extra help in school". So, medical fraud then? If it was just a B.S. diagnosis for "free help", why aspergers? Why not something more "catch-all", yet less specific-sounding like PDD-NOS? Or maybe there's some generic diagnosis that equates to "hey, your kid is a 'numb-skull'".

I've tried for years to find a binary yes or no to the validity of the diagnosis, but just don't know.
Perhaps I'm the butt of a joke. Welcome to limbo.


Has anyone else on WP experienced this situation?

I would have to agree with the "probability" aspect.

Something like "high-functioning autism" just does not have as much objectivity as something like tuberculosis.

There is no objective test which would conclude one has high-functioning autism, unlike tuberculosis.

Yeah, I'd like to see an objective test with numerical values. I'd like to know definitively who and what the hell I am. If I'm merely a dunce, so be it.

Anyway, thanks for replying Kraftie.

<joke>I think your diagnosis was accurate</joke>

I know exactly what you mean, and I do very much agree with you.

An ASD diagnosis is indeed quite different in nature from typical diagnoses in other areas. For example, that fact that one of the criteria for a diagnosis concerns the extent to which the person is impaired by the condition. If someone has a broken bone, the doctor would never say something like "well, I don't think you are significantly impaired in your everyday life by that broken finger bone, so therefore it isn't broken."

Likewise, the fact that a diagnosis can depend upon impressions and recollections provided by third parties (such as a parent or guardian), and their possible conscious or unconscious biases, adds to the variabilities and uncertainties.

It would be very interesting to know if extensive studies have been done in which people were independently assessed for ASD by different clinicians, to test the reliability and repeatability of the diagnoses.

I do understand your point, but must point out that there is a large degree of impairment discrepancy between a green fracture and a compound fracture. Of course, in those cases it's quite discernible with the machinery.


That's true. In my case, as far as I'm aware, I was never evaluated based on suspicions of anything other than depression. My mom told me stories, and I remember, being much more sensitive to sound when I was younger. I spent a lot of time learning to suppress the startle reflex from loud sounds because as a guy it's "uncool".

Of course that could be caused by other factors, as could the texture sensitivity. It's very nebulous.

Yeah, it would. The thing that makes me doubt my mother's claim is that the doctors were telling me things relevant to the diagnosis that I was doing before she came along with her dismissal. I had, and have inconsistent eye-contact for one. Yet again, it could be something else at play. Argh!

https://www.medicinenet.com/amyotrophic ... _sclerosis
No one test can provide a definitive diagnosis of ALS, although the presence of upper and lower motor neuron signs in a single limb is strongly suggestive.

According to this web page there is no definitive test for ALS either, yet the Social Security administration will expedite your case if you are diagnosed with it so can get your benefits before you pass away.

John Elder Robison seems to think that it's not too far off, he talks about it at the end of his book "Switched on".

There have been times when I’ve questioned my diagnosis. I received it as an adult after a thorough neuropsych evaluation. I do have a lot of the symptoms, but sometimes I wonder if they’re due to other things like having a very sheltered childhood - I was homeschooled and was by myself during the majority of my adolescence.

I don’t know. My struggles are very real, so perhaps just having the symptoms amounts to the same thing.

This is just one reason why I will never get myself officially diagnosed. I just feel that it is a waste of time and money as I feel very much that I could "trick the system" enough to vary the outcome. That might sound pretty big headed of me but in fairness I feel like I have "tricked" various systems my whole life so I am highly doubtful not only about the accuracy of diagnosis but also about walking away believing in the diagnosis. I would perpetually doubt it, so it seems pointless.

My biggest fear is that my "symptoms" - mainly, exhaustion from social interaction, some repetitive behaviour and sensory issues - are due to some other medical reason that I am meant to go to the doctor and get sorted out. But then given the ebb and flow of these issues they feel much more like something pervasive that is part of me rather than something else.

In terms of my daughter - I took her to the supposedly most knowledgeable place in the country working on difficult presentations and female diagnosis. I asked them was there any doubt and also how fast and how obvious it was to spot. They indicated that it was pretty clear cut for them. However, I think she still passes in most scenarios and would most likely be missed by anyone but an expert on female ASC. Saying that, as a mum I can see it and see it all the time. I am pretty sure they got it right.

^^^The "pervasiveness" of your symptoms.....is a hallmark of autism.

Autism is a "pervasive developmental disorder."

This, in a sense, confirms your impression, even without "objective" criteria.

By the way....glad to see you!

Thank you for creating this thread.

Your question on whether or not an ASD diagnosis may be a probability is also one of the reasons that I haven't officially sought a diagnosis. For me there are other reasons as well, including an admitted lack of confidence I have in the mental health field in general and the fact that I would reject any professional recommendation for medication. I'm nearly 50 and my wife's view on me seeking confirmation of a diagnosis is: "What's the point?"

In no way do I think negatively on any one else's decision to seek a diagnosis for themselves. I'm definitely torn on the subject of seeking out confirmation for myself. I do see a few advantages for me if I did receive a formal Dx including a sense of relief/confirmation and also a different level of understanding on the part of my spouse (see, I am actually "different" for a reason) even though she is very understanding to my sensory sensitivities and my minimal eye contact, etc.

If you get the full battery of tests that I got there is no way for you to trick the system. They are designed so that you can't do that.

Yes, you are right of course. The cognitive testing would probably be more definitive. But even so, I just don't get how that alone would amount to a diagnosis. The cognitive testing my daughter did for example put her on high average for everything (some she was very high average like 99 percentile) apart from processing speed where she still came in as low average. I don't get how that by itself would really amount to anything? But perhaps the tests are much different for adults?

I am not meaning to belittle the process I am just saying how I would have a hard time believing in it.

But in the interest of full honesty, I had a life chaining horrific experience of a child psychologist when I was 15 and so there are other reasons why I feel safer not putting myself in the hands of psychologists of any kind again. Yes... i get it... they are not all like that.... but it was enough to freak me out for life.

Good to see you too.

Thank you for your comment. That is what I think too. If simple things like resting up, spending a few days without much social interaction or pressure reduces my symptoms then surely it is unlikely to be an underlying medical issue. I think it is much more likely in my case that I have some level of autism whether it is broad autism phenotype or at the edge of the spectrum and that I should bear that in mind in order to not push myself too much and so that I can carefully limit my social interactions (as they are extremely draining for me).

I just wish there was something I could do for my eyes. And that is what has me wondering if there is something "wrong" with me other than what I assume is just part of who I am. I am considering getting some glasses with clear glass as I feel any layer between me and other people when I am in eye-contact situations would feel "protective" and could make me feel better. As it is my eyes are constantly hurting and feel constantly overworked! Now with summer, I just wear shades all the time and it does make it a lot easier to talk to people face to face.

My mom told me the same thing. She has acted like it explained some things and she never knew why she had to do things a certain way or teach a certain way and she always knew I had something and I remember her telling me she knew I had more going on than ADD. Then she has told me this diagnoses was to help my parents to get power over my school to keep them from putting me in a behavior class. She also told me it was just to get me through school and she said we cheated the system. Now I feel like a fraud.

She said I just have anxiety so I told her "so why couldn't I just get that diagnoses only?" and she said "It wouldn't have made you still qualify for an IEP." I then find out you can still get IEP for anxiety disorder so I told her this and she said it would not have given me the help to the degree I needed. Looking back I can remember my mom saying I have anxiety than using the word Asperger's and I just thought she was mentioning a component of it I have. It's like saying an autistic child has auditory processing issues or sensory processing issues than using the word autism so I thought that is what she was doing, same as with OCD. I only thought she was mentioning the components than using the whole label. She did say OCD and anxiety was part of Asperger's too growing up so I didn't bat an eye.

I also feel my psychiatrist gave me this diagnoses because of all the other labels and problems I had, OCD, dyspraxia, ADD, SPD, my learning style, anxiety, poor social skills, and someone told me online no doctor does that.

But hey I think I have a disorder that has not been named yet and I get if my psychiatrist had more patients like me, he would have studied it and given it a name than having to do a "closest match " diagnoses saying this is the best he can do for a diagnoses and telling my mom Aspeger's is the closest she will ever get to for me for a diagnoses.

But I wonder why wasn't I given the PDD-NOS diagnoses.

Welcome to my club.