Critical of self diagnosis - you shouldn't be

Post Reply New Topic

Who said anything about requiring self-diagnosed people to identify as self-diagnosed?

I wish the diagnosis status was still there. I looked at those often just for my own information and understanding and am uncomfortable with people not being able to see on my profile that "I am not sure if I have it or not". Now I will have to work that in for my posts, at least the ones that might matter that way. I don't want someone to have no choice but to assume that because I am posting here that I am professionally confirmed and diagnosed. Maybe I'll just make a permanent attachment.

I guess I did.

I want that too.

I want people to feel comfortable coming here to talk about their experiences, regardless of what diagnostic label they may or may not have. I don't think the diagnostic labels need to be such a focus here. Many people here have other disorders comorbid to an ASD, and some have other disorders without an ASD. Some have been diagnosed with another disorder but think they really have an ASD. Some think they have been misdiagnosed with an ASD or other disorder. Some people have had so many different diagnoses they are not sure which one is correct, and some have not been diagnosed with anything.

But the point is the label doesn't matter as much as being able to talk about our experiences and how our lives are impacted, and to be able to do that without being scrutinized for how they label themselves, or how they have been labeled by professionals. Many people really need to be here to help figure these things out for themselves, and need to feel comfortable asking for help.

Many are struggling, vulnerable, downright broken by years of not knowing for sure what they have, being given the wrong medications or treatment, and not being taken seriously by professionals, and probably the absolute last thing they need is to come here and see people invalidating the very concept of self-diagnosis because that may be the only option they see for themselves at present.

Maybe what we need to figure out here, is this site primarily meant to be a public representation of the thoughts of officially ASD diagnosed people about autism? because that seems to be the underlying thrust of some of the complaints about self-diagnosis, that it is going to somehow mislead other people about what autism is if undiagnosed people are misrepresenting autism.

I think if we want people to be transparent about not having an official diagnosis, the culture has to be accepting of that transparency. That doesn't mean being accepting or approving of the practice of self-diagnosis, but it means accepting the use of the label, which is already well established here.

I think it's important for this to be a place where people can come learn about autism, from people who ARE diagnosed, because that's the main reason why I initially came here and it has helped me tremendously.

But I don't think everyone who calls themselves autistic is obligated to give an accurate representation of autism to the public.

I think the burden is on other members to not assume that, because there is nothing about this site that suggests that every single member is professionally diagnosed.

Being undiagnosed myself, my own technique in terms of participation is to simply not post on the topics that seem to require an official diagnosis. If I have something to contribute that I read in a research paper or other source, I will word my comment in such a way as to make it clear that I'm not talking about my own experience.

Spot on.

I questioned the validity of my first official diagnosis, and eventually requested a re-evaluation under DSM-V. The result was a diagnostic shift from AS to PDD-NOS, since some issues were not fully addressed in the initial diagnosis.

This is a practice that is inherent to the Scientific Method -- even when you seem to have a reasonably sound conclusion, you still question it, even to the point of having it vetted by the peer review process. In my case, the peer review committee consisted of three other members of the same research group that included the individual that rendered the first diagnosis. So far, a total of four PhD types have "placed me on the spectrum", metaphorically speaking, with the only conflicting opinion being where.

Did the first person give a valid diagnosis? I think so, although it was based on just a few interviews and a mail-in questionnaire that my mother filled out (she thought it was to obtain a security clearance. I did not try to disavow her of that assumption.). While I did not question the validity of the diagnosis, I did question its accuracy -- thus my request of a more in-depth evaluation. I feel comfortable with this process.

Here's an analogy to consider: How many self-professed Christians, fully confident in their righteousness, have turned out to be not-so-Christ-like when the full scope of their private lives were revealed?

So too is it likely that a self-professed Aspie might very well turn out to be not-so-Aspieish upon closer examination by people who are trained to know exactly what to look for.

This is my advice: if you think that you may be on the Spectrum, then please consult at least one real expert on the matter -- in person and not through the anonymity of a social website.

For many people in various places, it's really an issue of affordability.

My official Asperger's diagnosis was expensive. The sad thing now is that I've got the type of doctor that would give me one for free. What's sadder is that doctor wants to give me that diagnosis. I'm diagnosed already. Twice in fact. Once by that doctor.

I went down the whole self-diagnosis road and it was a journey of self-discovery for me. I'm glad I went down it and didn't just have a doctor spring that dx on me. I'd probably be less accepting of myself as autistic if that were to happen.

It has been helpful though because I've been allowed services that take the stress off me from job searching and I could get other services if I wanted to, like if I decided to study. And gosh I need all the help I can get. I'm going back on ADHD meds because there's a bit of pressure on me to study.

I'm personally fine with self-diagnosis. An official diagnosis does also change the way people look at you. There's always this element of doubt when one is self-diagnosed. I even had that before my official diagnosis. I was fine (eventually) with Seinfeld saying he could be on the autism spectrum. It actually helped me keep an open mind to people with a milder type of Asperger's syndrome. In the past I have been a bit of a snot to those people.

My friend was told by the same doctor I have that she may have Asperger's. Now because I've known her for years and I can compare her symptoms against mine, I've always doubted she had AS, but now...she's just come out of this seriously suicidal state, and all I can think now is maybe knowing she has AS is enough to help her heal. Because once I was diagnosed with AS my social anxiety just vanished.

So was I! (glad that you were there), you will never know how much you helped me, and how stressful this "conversation" (and the following ones in other threads) had been to me. And I thank you again for your understanding and kindness, it is very appreciated.

If someone thinks that the concept or process of self-diagnosis is invalid, then they can say so on wp, just like if someone thinks that the concept or process of official diagnosis is invalid. This way, different perspectives can appear on wp.

Yep, if somebody - *cough*dianthus*cough* - wants to say that they think an official diagnosis is invalid, it wouldn't bother me at all. In fact as far as I'm concerned, they could make a whole new topic about it. I'd probably be more likely to stay out of it than I would yet another thread banging on about self-diagnosis.

I don't believe anybody on WP believes that official diagnosis is invalid.

What's questioned--rather frequently and with at least some justification--are the qualifications of the people doing the diagnosing. As stated by many within WP, there are psychologists/psychiatrists who have an old-fashioned view of autism.

The rather subjective nature of the diagnostic process for adult ASD's--which is at least somewhat akin to the process which is performed by "self-diagnosers"--is also questioned by some.

and there is no test yet standardised on older populations.

I might think that specific official diagnoses are invalid, depending on the process involved, and regardless of whether or not the clinician had impeccable professional qualifications. Qualifications only affect the likelihood that the diagnostic process will be valid; a qualified and knowledgeable clinician can still perform a poor assessment. Ultimately, the sorts of tests given during the assessment, their relative weights, and how they are interpreted determine diagnostic validity.

I agree. I think it was a mistake to remove not only diagnosis status, but also age and gender from the profile. I used to frequently look at people's profiles to get a better understanding of "where they were coming from".