Why Do People Hate Self-Diagnosers?

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As someone who was diagnosed as a young child, I don't know what people who are not diagnosed in childhood go through very well, but I don't know if I'd knock 'em for self-diagnosis, judging from the great level of difficulty and often little practical reward of getting a diagnosis as an adult.

In my case I know something is wrong and always has been, but hell am I clueless about it. As a toddler I had almost all autism signs and I still do now so I suspect it's autism, but I can't diagnose myself. Waiting for a professional to do that. I wouldn't be surprised if it was autism, but there are so many things that could have my symptoms.

Just at the moment I want CAMHS to go away. You're in the UK and not much older than me, did you have any experience with CAMHS, Coda?

Is there also perhaps an issue here with the term "self diagnosis"?

In my own case when I say, "I'm self diagnosed", I'm not saying, "Yes I definitely have Asperger's". I'm saying, "I'm fairly certain", or "almost certain" that I have it. I am not absolutely asserting that I do. I use the term "self diagnosed" as a way of saying, "This is my opinion, as opposed to a professional diagnosis".

There are very real reasons as to why I may never be able to obtain a professional diagnosis. I grew up in an age where we didn't have the luxury of diagnostic or support services for Asperger's. Whilst I am lucky enough to live in a country with (theoretically) free health care, I still can't just turn up and demand access to the services I want. There are very real problems with getting past the initial gatekeepers due to funding issues and extremely patchy provision of mental health services across different parts of the country.

As I said in my earlier post, none of the problems with getting a diagnosis are insurmountable, but they do require a lot of effort to overcome. And for much of the time I simply don't have the personal mental resources to be able to make that effort.

Well... I'd feel very lost, I know that. I think I'm starting to understand. Before I was diagnosed, I lived a in a small town in the North (Scarborough) that didn't have a clue what autism was (My joke is that someone could be born with Down Syndrome and the doctors wouldn't know). They labelled me as naughty and slow and left it at that but my mum knew something was wrong and so moved us to London where I was diagnosed the year I got there.

I guess I could imagine myself as an adult living in Scarborough with no job. I would probably have heard about autism and would have noticed all of the similarities; especially the eye contact one as teachers constantly forced me to look into their eyes. Is my parents still alive in this hypothetical scenario? If they are I would still be living with them probably still unable to bathe myself because I wouldn't have gotten help. If they are dead, I'm probably living with a family member...

I don't know what I would have done... I probably wouldn't have been able to afford a private assessment for autism, I wouldn't have been able to move because I hate change. I don't know. It's scary not knowing. I would have probably would have just stayed the same person I was before I was diagnosed. Unable to do anything for myself, constantly having violent meltdowns, unable to communicate correctly...

I just can't imagine myself going on in life without a diagnosis as I'm not as high functioning as a lot undiagnosed people are, they have been undiagnosed and have stayed out of the radar because they were able to get on in life. I'm sure they've struggled but they've been able to sort themselves out. (I hope I've worded this okay. I've read through it and I can't tell if it sounds insulting but I have a feeling it might be, I'm not sure).

I'm starting to understand their predicament though, slowly but surely.

Last edited by Coda on 11 Jun 2015, 5:14 am, edited 1 time in total.

Yes I have had experience with CAMHS. I've been with them since I was 11 years old but I recently switched from them to the Adult Mental Health Serices (because I'm 18 now) which isn't as good but they provide just about the same level of help. I don't know why you don't like CAMHS. They did a lot for me and helped my mum quite a lot with learning how to help me.

Why should I spend a lot of money on a diagnosis when it's not going to benefit me, and there are better uses for the money in my life? Hmmm... a diagnosis, or an old used car (the only kind I drive since I don't have money for better)? Hmmm... a diagnosis, or 1/2 the cost of braces for one kid? Hmmm... a diagnosis or an entire school years' worth of music lessons for one kid? I think the diagnosis is going to wait!

At this point, a diagnosis does me no good. I am too high functioning to qualify for support services. The only way I would need support services is if my husband dies or becomes incapacitated and I have to run the house by myself. That's a pretty bad worst-case scenario so I don't feel the need for a diagnosis is urgent. Perhaps when my kids are grown and out of college I might have the extra money hanging around to get a diagnosis.

I am pretty sure I'd get one esp. based on history. I already have confirmation from my mother (a nurse who works with kids on the spectrum) that she sees traits in me. So, the parent testimony would also support my suspicions.

If I don't appear so autistic now, it is because I have worked very, very hard on some things. A few people (esp. my husband) have helped me to see some things I was doing that were bothering people and helped me to change. Some life experiences, like living in a different state for 5 years, "helped" me. Some very difficult experiences, indeed. Also, the lifestyle choices I have made as an adult have helped to reduce (not eliminate) symptoms. At this point, probably people I have casual contact with wouldn't know. But the people I know well and spend enough time with can see it. My husband thinks I am on the spectrum.

So, what is it to anyone on WP whether or not I have an official diagnosis? I'm not going to run out and get one just to satisfy my own mind (or anyone else's for that matter). If that was the only reason for a diagnosis, to me it would be a waste of money.

I'm 18 and still with them. I dunno it's just all the questions I guess, I don't like it. Just they legally have to be involved since I went to hospital when 17 because I needed stitches. I almost got put on a psych ward so they scare me

Self-diagnoser here. And I really don't care if someone hates me for it. Haters have no relevance in my life.

What I will concede, though, is that as such I'm really just saying I THINK I have it because it's the best explanation I've seen so far and makes a lot of sense of the issues I've had all my life. I don't believe in absolute terms it really is the only explanation, and I'm well aware it's not the only problem I have. I suffer from some pretty severe "brain fog," I'm ALWAYS sleepy, and I power through some intense bouts of depression and anxiety. I did have a psychiatrist diagnose me with ADD back in the day, though I'm not certain I actually have ADD, and I briefly took Ritalin. So maybe I don't know what's wrong with me…I just know that I'm not normal.

Thing is, I KNOW that a diagnosis is a bad idea at this time. I mentioned to a "friend" once I thought I might have AS. This person called DHS to investigate my family and take my kids away. The social worker asked me point blank if I've been diagnosed with AS. I answered truthfully: No. As long as I avoid talking to people, I just seem like a normal guy who walks funny.

I'm ok with that.

Hate me for being a self-diagnoser if you want. AS or not, SOMETHING keeps me from functioning and adapting in society as fully and normally as others. I "real" diagnosis simply isn't in my best interest.

DHS investigated you just because this person told them you might have AS? Did DHS say that was a reason to take kids away?!?!

A very worthwhile observation, and one which some of the 'diagnosis hardliners' should pay more respect to, in my opinion.

I am in a very similar situation to the one you describe in the rest of your post.

I say that "I have been screened with having ASD" (using the University of Cambridge Autism Research Centre screening tests) or that "I am an Aspie" (meaning "having or displaying characteristics of Asperger's syndrome" by the Oxford Dictionaries ( http://www.oxforddictionaries.com/us/de ... lish/Aspie )). Both are true, and neither suggest that I have been diagnosed.

Has anyone checked the qualifications of the folks that have diagnosed you as an Aspie?
I thought the psychologist had the best qualifications, but it turns out the ordained minister actually has much better experience.
1) his wife works with Aspies as kids and they come around to his house as adults so he is quite familiar with how adult Aspies behave.
2) case worker for high risk adolescent kids
2) jail counselor and probation officer


Could other Aspies can obtain unofficial diagnosis from people who, while they can't provide an official diagnosis, have a more than enough experience to say yes or no?

This makes some sense. Parents of children with ASD might find a new career in unofficial diagnosing.

One of the problems, I think, is that people only have experience with their own situation. One of the reasons I think my issues went unnoticed is because my uncle has a much more severe case of autism and I'm not that bad off. What is "normal" to my family would be "abnormal" somewhere else. One can easily disregard another person's problems because the person "assessing" is used to presentation that is more pronounced.

The people who would do the best assessing are the ones who have experience with people on a wide range of the spectrum. Those who work at schools for autistic kids would be good candidates. Isolated psychologists who may lack experience with autism are not the most qualified.

Which is far better than no experience at all which is what some individuals face when they can't accomplish a professional assessment. I agree with your other statements.

It's a roundabout way to describe someone who's not all there.
Other examples:
Not playing with a full deck
Bats in the belfry
A burger short of a Happy Meal
etc...

It's very unlikely that's actually what the teacher said about me, though...