Does the community approve of self-diagnosis?

Post Reply New Topic

It has not happened much lately but until recently it was pretty common for a member to ask other members if they think they are autistic. Often when that happens we will throw in the caveat that we are not medical professionals who can't diagnose just to make sure there is not a misunderstanding which there usually is not.

There are good reasons why a lot of people remain undiagnosed.

- In the UK, a diagnosis is available on the NHS (public health service) but the waiting list is very long - several years in some counties.
- In the US and other countries, it can cost a lot of money.
- Around the world, it can still carry the stigma of 'mental illness' and prejudice people's chances of employment, promotion, acceptance in society in general.

Speaking only for myself - someone who went self-diagnosed for about seven years before choosing to get a formal diagnosis - anyone who identifies as autistic is autistic, as far as I am concerned.

People can identify themselves what they like, however many people surf mental health symptoms online and autism is so subjective many jump onto it as a reason for their problems...until they are diagnosed not autistic.

Its the same with all health problems it used to be said the scariest book in the world to a hypochondriac is a common medical book & symptoms .

I hope I'm misunderstanding that, because that implies that the cure to autism is just not diagnosing anybody. If access to evaluation services and the reliability of the evaluations were better, that would be just fine. But some of us missed out on diagnosis purely based on a technicality and getting that mess fixed isn't always easy. In some cases it's not even possible.

I suppose in theory that would be the case, there are many in gov who would like the financial burden to go away, though that wasn't the point i was making.

Diagnosis opens up services for help & financial support, (which is why autism will always & needs to remain a medical disorder) if they just gave that to anyone who couldn't be bothered to work giving the excuse they had a disability the whole system would fall apart leaving the most vulnerable real autistics destitute & the country would go bankrupt.

So its ok self diagnosing up to a point, but sooner or later the question will come up why you was never diagnosed if you suspected you was autistic.

Of course there are huge waiting lists but using that as a reason only goes so far.

In Connecticut services stop when you turn 18. This is also true for those disabled by other mental disorders, according to a lady I spoke to who had her services cut off at 18. When I first joined this group a diagnosis cost $1500 and wasn't covered by insurance.

I had a stroke decades ago and could have gone on disability and received a nice check every month as I had worked enough quarters as an engineer to qualify. Instead I made a full recovery. I can now play golf!

I also did well financially, saving enough money to retire early!

I have a very unusual situation with regard to diagnosis. Some autistics are misdiagnosed as transgender.
Had I spent the money, I'm sure that as transgender I would have been diagnosed as on the spectrum!
I think I have pre-wired feminine body language that screws up my social interactions when presenting as my birth sex.
This goes away when I present female!

TBH, I'm not even sure where to start because none of this really makes sense. Most autistic adults don't receive any services, so most of this doesn't really make any sense on that basis. We don't get services, so the government isn't going to care, and since we are able to make it without services, that kind of implies that maybe we shouldn't be pushing this view that all autistic people need formal support services and assistance that are being funded by 3rd parties. Nothing in the diagnostic criteria requires that the support come from other people, or even cost much money, a bunch of alarms, ear plugs, tax rides and having an organizer in all qualify as support and those vary in terms of how external that is. A lot of the things that we need were created and popularized for use by NTs.

As for the last bit about people asking, people already ask. If it's not why haven't you been diagnosed, it's why are you so odd, or if you have been diagnosed, why it took so long or are you sure that it's even an accurate diagnosis? Even with a formal diagnosis, there's a lot of issues in terms of the reliability and validity of the diagnostic criteria in large part because there's a fixation on the externally visible experience and on the alleged epidemic of over-diagnosis rather than the real epidemic of misdiagnosis.

That doesn't surprise me, there is a lot of trans and non-binary folks that are autistic and vice versa. And unlike some other diagnoses there is no rule that says you can't be both.

I think that services for kids are sometimes excessive.
A kid gets diagnosed and they push all sorts of therapy to make them "normal."
Is that really necessary? They get burnt out trying to do too much because the therapists get paid.
So maybe there ought to be some moderation but we all know parents don't do that.

I don't really see my diagnosis as an explanation of anything, tell me my symptoms are a result of this gene mutation that did this disruption to my brain and ill really take it as a real diagnosis / explanation of something.

Those with more severe autism get diagnosed as little kids or even teens & adults and it unlocks help & welfare that i understand the need for, but older people who are just a bit odd but can function ok, live independently and in employment. What benefit does it really bring?

You satisfy the 4 paragraphs of the paper DSM so you have this unidentified umbrella condition that we don't know the cause of why your brain does what it does and how that differs from others like you who have the same temporary label but likely will have another label in the future when more causes are known, is that really helpful?

Why not just accept the difference without a label

"You can go to this therapy that will charge you x$£ to talk about how you feel about that" "come again each week".

Looks like a cash cow for the psychiatric industry more than anything else, but I'm just thinking out loud, if others found it helpful good for them.

Precisely.
I identify with the latter, although I resent being older (not being called older... actually being there...it sucks)
I self diagnosed last century, but could see no point in diagnosis then.
My dysfunctions were fairly insignificant, so I needed no assistance. My adopting the autistic mantle was purely to explain my history, and shape better ways to interact with the world.
I was reluctant to even try self diagnostic quizzes in case I disrupted my world view.
I felt community in WP when I felt peripheral to the communities in which I was actively involved.
Peripheral....hah... that ought to be my middle name
Yet when offered a confirmation of my self diagnosis, I refused.
I have not yet come up with a reason why. I've put the hard yards in to fake normality, perhaps I see having something in writing being a threat to that. (I'm not sure what the government security vetting service would have made of my diagnosis)
What I CAN say is that I appreciate having somewhere I can unburden and I REALLY appreciate the courage of everyone else who has bared their souls in public. I have learned so much about myself thanks to comparison with the array of opinions presented in the forums.

So...many thanks to WP...but thanks even more to ALL of you.

Agree very much. I do believe self-diagnosis is OK. I prefer to be independent and work things out myself. There is nothing to gain from official diagnosis in the United States that I know of, at least for an adult, that is. I don't see any upside. If there is one, I don't know about it.

I thank God for Wikipedia's article on Asperger's, when I read it, and continued researching online, and took online tests, it was like unlocking a mystery about my life, everything fell into place over time. You see, I had always thought that I was a failure because of my choices in life, and that I could have controlled everything, but in reality, there are things I can't control, limitations I have to wrestle with in my life. It helped knowing the reason for things, for why I did not have friends, and why I could not form relationships with others easily, and why people found my odd and eccentric.

Now that I know the reason why, it makes me feel a lot more accepting of myself, and also very humble. I am not so egotistical anymore, thinking I am better than others. Instead, I am less than others, in some ways, the social ways. Accepting that is very comforting, it explains failures. It also offers clues on what to do in situations.

I just accept that people are going to misread me and judge me, that is my fate. I have to make extra effort to pacify others and explain to them that I am OK, and I am not trying to be rude or aloof. I go the extra mile to be nice to people. I never ever hold grudges, because I know half the stuff that happens is probably the result of my being different. So I just have low expectations, and I like to exceed expectations when I can... I try... if I fail then it is par for the course, you just have to accept that.

Very well put, i recognise all of this in myself

The earlier somebody is diagnosed the less of an explanation a diagnosis is going to be, because there's likely less unusual stuff that requires an explanation. There's also likely a lot less subtle stuff that isn't clear. For those of us that didn't figure it out until we were in our 20s, 30s, 40s or older, there can be a lot of stuff that a diagnosis, even if informal, can explain.

It's certainly a valid thing to think about. The main reason why self-diagnosing exists is as a way of describing your base line and it's one of the reasons why the previous system of having more labels was better. I do get that there's this perception that people using the term AS are wanting to separate from those who were previously diagnosed with autistic disorder, and that proably does happen. But, it's also a separate condition that doesn't follow the same developmental pathway and if we're starting in the position where we're all "autistic" and then having to explain where precisely we are within that space in order to get help, that just causes problems due to the inherent communications difficulties that we have.

It also makes it a lot more challenging to find resources and strategies that might work, I've personally lost track of all the things I've tried to do to get me where I wanted to go, only to find them mysteriously failing. I know now, that most of them were never going to work, and the ones that did were going to require some adjustments, but without a label of sorts to put on it, it makes narrowing things down a lot harder.

I'd also point out that just because i haven't got a formal diagnosis doesn't mean that the psychiatric industry hasn't made a lot of money off me. If anything, they've made far more money by handing me a bunch of wrong diagnoses and wasting my time with pills that don't address the problems that I've got.

So curiosity finally got the better of me.

AQ 39
RAAD 149

Do I feel different? Nope

Thanks to my parents I was accepting that I different. What the explanation did for me is make me realize that the “traits” associated with autism are not because I am a weak person.

I honestly am barely functioning. And I'm "level 1"/"high functioning".

Knowing I'm autistic and ADHD, is accepting that my failures to be an adult are not my fault.

I have a job, and I'm even successful at my job. But... I have multiple, consistent problem areas. I have been threatened with write-ups if I don't "get my act together", and the only reason they've put up with the problems this long is cuz I'm otherwise an excellent employee.

I also am unclear on whether I can live independently or not. Unsure if my current living situation (in house w mom) is just.... living in a s**t economy with a job that doesn't pay enough, or if my mental disorders are to blame.