Why Do People Hate Self-Diagnosers?

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Why is there a lot of hatred towards people who self-diagnose themselves with Aspergers or autism?

I've gone through a few posts on the forums and have noticed a lot of hostility between some people who are diagnosed and some who are self-diagnosed.

I think in very 'black and white' way, so I find it hard to understand that someone can be 'self-diagnosed'. I always think you either have it or you don't. You can't think you have it but not have it diagnosed... It feels strange to me but that's because I think in a very rigid way. So don't take my view personally. <- [I don't know what this smiley face mean but I assume it means that my opinion is stupid or something.]

What I fail to understand is why self-diagnosers don't try and get diagnosed once they believe they have autism. Once you're diagnosed you get a lot of access to things to help you. Once I was diagnosed I got a lot of therapy and went to a private special needs school.

I'm 18 now (so classified as an adult) and get seen to by the adult mental health clinic who come out a lot to check that I'm okay, to help me and to see if I need anything. I get a visit once a week by person who arranges different things for me like outings and such. In college I get special help like an LSA who looks after me throughout the day and special arrangements for tests and things. I get a card that allows me to bring a carer (usually just my mum) out with me to places like the cinema, London eye and stuff without having to pay for them as they are my carer. I get arranged transport so I don't have to take public transport... Lots of different things that so many adult autistics can access.

If you are an adult who believes they have autism, wouldn't you get a diagnosis so that you can access stuff that can help you?

Especially if you are currently unemployed or in case you lose you job as you can then receive disability benefits which is lots more than normal benefits.

So what I want to know; What's with the hate between the diagnosed and the self-diagnosed and why don't the self-diagnosed get officially diagnosed so that they can receive help and special arrangements?

Well some people WANT to has AS or ASD as some people think it would make them special. A self-diagnosis can be subject to bias and the results can be manipulated. Therefore an official diagnosis is far more credible. Some people also seek a diagnosis simple because of welfare or disability pay. I am saying some people because you will find fakers and scammers anywhere. Therefore once someone has an official diagnosis, they are more likely to actually have AS than a self-diagnoser. The self-diagnosis people have a chance that they might have something different too. So if you actually are completely aware of autism, then you can more likely differentiate it from PDD-NOS and schizotypal disorders.

I've been here since 2010 and I am self-diagnosed and I've never seen any hateful messages towards me.

It depends on the motivation for the self diagnosis and how often they bring it up. Self diagnosis is something that can be easily be abused by anyone with even a hint of social awkwardness and that can be grating quickly, especially considering there is no professional opinion to back it up.

There's nothing new to be said on this topic which has been extensively covered on WP in the past, and the threads have a way of turning very nasty, marginalising and divisive - as last year's jihad on the self diagnosed did. Those threads are still available and some members left because the vitriol was hateful.

It can cost thousands of dollars in the US for one to get officially diagnosed.

Autistic people don't have as much access to services as they do in the UK.

It is very difficult for somebody with Level One autism (per DSM V) to get approved for disability. It was difficult for people diagnosed with Asperger's Syndrome under the DSM IV to get approved for disability.

All very valid reasons.

Additionally, I didn't "figure it out" until I was over 30...for some reason, the older you get, the harder it is to get an official diagnosis. Plus, I was already working and had just earned my Master's degree, so I figured that getting one (if I could) would probably do me more harm than good in the long run....

Everyone's situation is unique. For me, having a "why" for all of my issues and problems gives me some personal validation, and tells me what to look for when symptoms get troublesome (shutdowns, withdrawing, feeling especially socially inept on days when I'm tired and/or ill, etc.).

I have never had any "hatred" directed at me either. I really don't think any of the self-diagnosed people on here are "poseurs."

Finally, regarding "you either have it or you don't" - well, yes, it's just that some people are able to figure it out on their own and know themselves as well (or better) than a diagnostician would.

$1500 and I figured it was kinda late when you have been working at the same place for 25 years!

They are already pretty laid back at work--yesterday I realized there were rain shows rolling through the area, so I rushed home to dry off some stuff, and came back to work 2 hours later. Then I stayed late to make up the time, and went right to the grocery store to get some raw tortillas, as I knew that I be going home late enough to avoid rush hour traffic! Today I figured exactly how to cook them--didn't get the grill hot enough yesterday--tasted OK, but much better when you cook them just right.

Maybe because they whine and go about referring to differences in opinion as hatred?

Lie by implying that lack of money or qualified doctors forced them to self-diagnose?

Pretend that their self-diagnoses are no one else's business, then seek out other people to talk to about their self-diagnoses?

Adults with autism in this generation are a bit lost. Diagnosis is done in childhood now, but when I was a kid no one new much about autism. If you were in public education like I was no one gave s**t if you had problems. Getting an adult diagnosis is hard. Took me several suicide attempts before I was referred to someone who could diagnose me.

Not sure what causes the diagnosed to be rudely exclusive. It perplexes me.

For many adults, an ASD diagnosis would yield few accommodations for them (in the United States, at least). Of course, there are some educational and corporate accommodations available to adults, but not many. For most adults who have spent a lifetime learning to adapt to minimize the characteristics of ASD, a diagnosis would do little except confirm the personal awareness that an individual might have. That is important, of course, but diagnostic assessments are expensive, geographically distant or conducted by professionals who have little or no experience in assessing adults with ASD. All these facts make it difficult for adults to get diagnosed affordably, within their own communities and by knowledgeable professionals. After trying and failing once or twice, few pursue the matter further.

I'm self diagnosed. I'm reasonably certain of my diagnosis. I have no interest in telling anyone else about it. My reason for self diagnosis was trying to understand why I'm the way I am. For years it was something I was ashamed of and have only recently come to accept that I probably do have an ASD. I have a somewhat vague official diagnosis of mood disorder, for which I take lamotrigine. Based on my own research I think that is either a misdiagnosis or more likely just a part of something larger.

I haven't really come across much hate through reading the forum. There is certainly some, and some people have very strong views about it, but there is plenty of acceptance too.

My potential problems with getting an official diagnosis would be : -
1. I'm fifty one years old.
2. I'm female.
3. I have developed a lot of coping strategies over the years albeit at some cost to my mental health.
3. I appear to most people to be a reasonably well functioning adult. Nobody really sees the personal costs of maintaining my coping strategies over a long period of time. That may change if I reach the stage where I can no longer sustain that.
4. I've been doing the same highly responsible job for twenty five years.
5. I live in the UK. Theoretically I could be diagnosed for free through our National Health Service. In reality there is nobody in my area with experience of diagnosing adults with ASD. My GP would have to refer me to someone out of the area. I might get lucky with persuading my GP to do that or 1 - 4 above might work against me.
6. There are no support services in my area for adults with ASD.

None of those problems are insurmountable but it would require me to expend a lot of effort and/or money to get past them. In return I would get a piece of paper confirming something I'm already fairly certain about. There wouldn't really be any practical benefit to having that piece of paper given my current circumstances. If my mental health were to deteriorate though and I were to lose my job, my opinion would probably change.

Depending on your region and what your exact struggles are, it may not give you much access to anything useful.

I'm currently self-diagnosed and pursuing a professional diagnosis, but it's mainly for sentimental reasons (or something like that), not because I'm expecting practical benefits. If I try to weigh the pros and cons of an official diagnosis in my particular situation, it actually seems like a pretty irrational decision. Well, I'm going through with it anyway, but I can understand why someone else would make the opposite choice.

This sums up well the reasoning those have self diagnosed or defended those that self diagnosed have given.

Speaking of expensive assessments I will add this Insurance usually does not cover adult autism assessments in the USA. Geographically distance that was mentioned adds to expenses. Many people trying to find an explanation/what is wrong with themselves are under or unemployed just can’t afford it.

When many adults especially the older ones grew up and well into their adult lives with what we call “mild” or “high functioning” autism was almost completely unrecognized. Adults who grew up in that era report several mis-diagnosis and do not place more trust in professionals then they do in themselves. Even today there is still self reporting about going to multiple clinicians because of clinicians with dated understanding of Autism. This is expensive.

As you see above I am a defender of self diagnosis but will try to give some reasons why those that are against self diagnosis have given. I am sure those against will add/correct me. Self diagnosis contains the risk of self confirmation bias. The idea is that the self diagnoser wants an explanation will sub consciously find reasons why they have autistic traits. More generally it is felt an outside observer can be more unbiased observer of yourself then you can. And of course a professional has years of training the self diagnoser does not.

In the last 15 years have been fictional television portrayals of high functioning Autistics/Aspies ’s as socially awkward funny geniuses. This has led to a feeling there are many Aspie wannabees. People that read a few things about autism on google decide they are autistic because they think it is cool or trendy or to use Autism as an excuse for bad behavior. This is felt to causes credibility problems for people trying to explain the complicated difficulties involved in being Autistic. Further adding these credibility problems have been self diagnosed/identified celebrities that have said they are on or might be on the spectrum and backed away from it or have changed their story( Actors Jerry Seinfeld and Dan Ackroyd, “Aspergirls” author Rudy Simone).

As far as personal attacks people directly saying you are not autistic because you self diagnosed I have found that rare. There have been times particularly after Jerry Seinfeld said he might be on the spectrum then retracted it where there multiple threads where the validity of self diagnosis was hotly debated. Self diagnosers have reported feeling invalidated and bullied during these times.

As for my humble opinion if you don’t have access for financial or geographical reasons to a competent clinician and you need an explanation do your research thoroughly and if at the end of the process you believe you are autistic, proceed as autistic. There are professionals that have stated a large majority self diagnosed have done so correctly. So I view self diagnosis as a good workaround. If you do have access to a specialist in Adult Autism get the diagnosis. If things financially are ok get it for insurance. Things can and do go downhill and when you need a professional diagnosis you won’t be able to afford the price or time involved

It's for people to make their own choices. That's part of being an adult.

Autism is a rather convenient way to explain savant skills or peculiarities.

NTs don't clear their yard of dandelions by pulling every single one of them.

Or locate obscure references with very systematic memory organization system--sort of like star hopping.

If I do have something else, to the average NT, it would be indistinguishable from Aspergers.