REG: Self-Diagnosis is it a valid thing? (questioning psaych

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cfleischmann
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31 Aug 2017, 3:31 am

Fern wrote:
cfleischmann wrote:
what do you think of these people who self-diagnose themselves with ASD or other mental conditions based on one or more online assessment tools that took them 10-60 minutes to complete? I'd say for me the screening tool confirmed what all the doctors who said I had it said along with personal experience. To play devil's advocate here on the part of those who self-diagnose, getting an autism diagnosis in adulthood is pretty dang hard and expensive


Truth be told, I'm one of those people (sort of).
I'm not seeking a formal diagnosis because I'm not sure how it would benefit me, and yes, the costs are potentially quite high. Besides, for me, more beneficial than labeling myself is seeking contact with a community of people who have a shared experience in dealing with similar issues to mine. Maybe if I was lower functioning it would be different. Maybe if I was younger then it would be different. For now it's just nice to know how other people cope with the same issues I face. That is enough for me.



Well... I'm so glad you're here :-) no bad things to say about that and welcome to being part of my online life! Thanks for identifying as such and for doing what needs to be done to help you cope and get insight into you. Glad an "unofficial diagnosis" has helped. Honestly I say self-diagnosis is a double-edged sward on the one side it can help those like you, but on the other hand it can be easily abused by people looking to "gloss over" their personality or other flaws (an ex of mine did it with her PTSD/history of sexual abuse, she used it for sympathy and when she didn't need sympathy turned it off) That girl was a mess for more reasons that that.

So it's not that I have all bad things to say about self-diagnosis, I just would take such with a grain of caution and really do a dang thorough analysis of yourself and then check your understanding because self-diagnosing can also be a dangerous thing if done incorrectly.

Who am I really to say that someone is "not autistic" because they don't have an official diagnosis? I'm not, I don't have that skillset or ability. I take my fiancee as an example her insurance refuses to cover for the level of services needed to get a formal diagnosis and she can't pay out of pocket, enter self-diagnosis by her understanding the words and what they mean, analyzing her own life (past and current events), seeking input from close friends, family, and colleagues; and doing at least 2 different online assessment tools has come to the conclusion that she is on the spectrum. She used her own reading and comprehension skills to understand the criteria, matched that against her own historical and present data set, and then sought external data from others and me. Based on all of the data that was then analyzed by her and me together I'd say that's a pretty good job of self-diagnosis. It's the people that take a single data point and blow that result up bigger than it actually is that I don't have a fondness for. If cost wasn't so prohibitively expensive, I think more people would seek confirmation from a trained professional but since that's a far, far away idealic state... the current state of affairs will have to do and I do welcome sled-diagnosed people as valid. I hope this clarifies my view of things.


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B19
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31 Aug 2017, 3:50 am

It does :)

My own view is that the truly dangerous things are missed diagnosis, (the clinician fails to recognise AS); misdiagnosis (the clinician misses AS altogether and mislabels it as something else) and gender ignorance (the clinician doesn't know how differently AS can present in girls and women).

These are far more damaging to AS people, on the basis of what I have read on WP over the years, than self recognition, self discovery, or other processes that are part of realising one has AS traits to a significant degree.

I have hardly heard of any member here reporting being endangered by their own self discovery. Shock, yes, though shock accompanies the initial discovery whoever recognises it, clinician or the person themselves.



firemonkey
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31 Aug 2017, 7:04 am

I have looked on various websites for information about ASD and NVLD. What I have found is that I probably have significant ASD traits but fit NVLD somewhat better.
In terms of self dxing through online tests I have used the AQ(37),RAADS-R(138 average), and RDOS(133/44). All point to the possibility of autism. With the RAADS-R ,scoring both conservatively and liberally, I score averagely well above the threshold (138) but a little below the average for males with suspected ASD(142.8). To get an outside opinion I asked my sister to do the RAADS-R with me in mind. She scored me 163.
Despite the tests suggesting ASD I am cautious about definitively saying ASD applies. My main problem is long term social interaction difficulties .



Fern
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31 Aug 2017, 10:01 am

I get what people are saying. I can see where you are coming from being concerned about self diagnosis. It's hurtful when I'm talking to someone and they misunderstand me, then they say something like "Sorry! I missed what you were saying. Sometimes I wonder if I am mildly autistic or something. Haha!" It's also dangerous if you think you're dealing with one neurological situation, but you in reality have another.

To me though, these seem to mostly be problems associated with assuming an ASD diagnosis from a set of symptoms without a professional, as you all said.

I technically haven't done this, which is why I said "(sort of)". Do I suffer from face blindness? Yes, I do. Did I need speech therapy as a kid? Yes, I did. Do I get sensory overloads? Yes, I do (when I was a kid I was too afraid of the sound of flushing toilets to use the bathroom at my school). But together are these enough to make me Autistic? I don't really care. Even if I had a diagnosis, these issues would be treated separately and the same way as they are now without a diagnosis. Besides the monetary cost, I've had enough labels over the years that separate me from those around me. I'm not keen to add to the list.



zer0netgain
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31 Aug 2017, 2:39 pm

I see it this way....

1. There are virtually no Autism diagnosticians for adult males in most of the USA. Maybe you're lucky to find ONE in a major metropolitan area. Everything is geared to kids and teens. After 18, you're on your own.

2. Many areas of medicine are often more guess work than science. If they suspect A, they try the treatment for A, and if it works, they conclude you likely have A. If it doesn't work, they suspect B and repeat the process until they either "cure" the problem or at least provide a measurable amount of benefit to the patient.

Hence, when I learned about AS, I read up on it and it sounded like what my life has been like for as long as I can remember. When I tried employing the "helpful tips" I found here on WP to cope with how autism affects interacting with the NT world, I made much progress in improving my life.

Granted, I had a rotten childhood. Lots of ways I can just be anti-social, emotionally scarred for life, serious to severe PTSD...all of which could produce Autism-like behavior and issues, but there are symptoms/traits that are not common in any of those causalities, so I'm inclined to believe that my self-diagnosis is as valid as any "professional" evaluation. To this day, I keep trying to find a qualified professional to get formally diagnosed, and with no luck.



firemonkey
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31 Aug 2017, 2:57 pm

If professionals were that honest in their dislike of people self dxing they would make sure access to assessments, and maybe an official dx, were more readily available. It's a bit much if they complain about people self diagnosing otherwise.



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27 Sep 2017, 2:17 pm

B19 wrote:
Brain chemistry is not static but varies according to food choices, experiences, exercise etc. It can also be altered by drugs (legal or otherwise) as we all know. Character seems to be fairly constant in most people.
,


High Functioning Autism is fairly constant in most sufferers, and it is often interpreted as an entire set of character flaws.


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B19
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27 Sep 2017, 5:08 pm

Of course it isn't!



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28 Sep 2017, 7:50 am

I spent decades in therapy groups for dysfunctional family issues before chancing on a description of AS while trying to help my sister understand our mother. Suddenly, the whole family history made sense, including my eccentric career. My only other major condition was an attachment disorder that arose from parental AS, but the combination was so baffling that nobody had mentioned either possibility. Apparently, there are no general checklists, just a general desire to see others' problems as variations of their own.

Counsellors have had no trouble at all accepting this "self diagnosis." I tried a few tests, which confirmed it, but the history should have been plenty. One shrink wondered if I'd just been a rotten kid, but I'd probably tipped him off that I wasn't there for a prescription. I don't think that diagnosis was even in the DSM.