Why do some autistic people refuse to get a diagnosis?

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I've been a suspected autistic for years, I've had a few teachers agree to that statement. My mother dismissed it (#1 reason I haven't been to a doctor) but I've researched it and what they said makes sense. And I've researched other disorders too not just autism. I haven't fully "identified" (I'll be sure to use that term from now on instead of DX) myself yet but it's just so accurate to what I have experienced.

But as for not getting a diagnosis - from what I've heard, that stuff is so expensive... not to mention the fact that my dad just lost his job. Moreover, my mother is incredibly unsupportive when it comes to mental stuff and I'm terrified of what she'd do or how she'd react if she knew I was autistic. She's very unpredictable and can blow up on me any second, all it would take is one fell swoop and she could use it against me.

I'd love nothing more than to have my suspicions confirmed and to end the self doubt... I'd get a diagnosis if I could. But in my case it's gonna just have to wait.

With all this talk of insurance and diagnoses cost and work THANK GOD i live in canada.

In the past I have been diagnosed as autistic. It helped me when I was a child, and when I was learning to live independently, for people who are autistic but who have no intellectual retardation. My goal: living independently, has been achieved in October previous year. Now I have subsidiced work. I am considered mentally ret*d and not able to learn anything. This is based on biased opinion about autism, and not on facts. Therefore I am underemployed. He only thinks in terms of handicaps and doesn't see my intelligence and how I am doing my current job, and how I would do the job I desire.

So, I think the autism diagnoses is working against me, and I am thinking of getting it destroyed, because I am effectively not autistic in many occasions. Neurologically autism won't suddenly go away after the diagnosis destruction, thinking it would, would be too naive. I think my chances would increase if there is no longer an official diagnosis.

I in the should I shouldn't I camp regarding diagnosis

I am also in the camp of having a light bulb moment when researching Aspergers in relation to my father. I see a lot of that on WP. Someone suspects their child, partner, sibling, parent might be on the spectrum and recognise themselves along the way. A lot of the Aspergers traits my father displayed, I do, to but to a lesser degree.

I am dubious about trying for diagnosis because I am female, rapidly approaching 50, and living independently, all be it some of it is by the seat of my pants because some of my executive function issues make me rather chaotic. My GP dismissed the idea out of hand and only decided the only potential Asperger's sign was when I said I intended to cut my brother off as soon as I could. DNA is apparently more important than disgusting and unforgivable behaviour.

Diagnosis would give me a level of protection from an employment point of view but the due to my current earning level the actual support/therapy I want to help make life better I can pay for myself without resorting to the NHS which would be free but I would have little control over where I was sent.

There are people who will use something like Aspergers as an excuse for bad behaviour but that sort of a***hole behaviour exists everywhere among all sorts of people.

In short what would I get from a formal diagnosis?

I tell people I have Aspergers traits and outline the main sticking points which in my industry are not that obvious as it is a haven for people with Apsergers traits. I have spent time with diagnosed individuals and laugh/sympathise and share a lot of their difficulties doesn't mean I don't have the same ones just because a doctor hasn't told me yet

I don't think a blanket dismissal of the self diagnosed is any more helpful than the raft of stereotypes that exist about Apsergers.

In the US, it's prohibitively expensive for many adults to obtain an autism diagnosis--in the thousands of dollars sometimes.

I have seen, in many publications, that 3/4 of people in the US live paycheck to paycheck. They cannot harvest money from the trees in their neighborhood.

You're lucky your dad is paying for your apartment. You think my dad would even think of that?

With the way the internet has been using the word "autistic" in increasing frequency as an insult, I wouldn't be surprised if that has affected people's will toward getting diagnosed. I also see the logistic issues involved as well... parents not wanting to have to face the diagnosis refusing to let their children get tested (as mine did for a few years), medical costs in countries without a free healthcare system and the effort involved in getting diagnosed in places that don't have the infrastructure to get you tested swiftly.

When I was in sixth-form college I self-diagnosed myself with schizotypcal personality disorder because I thought that was why I was different. I had a friend with Asperger syndrome who I knew online, and though we had startling bahavioural similarities, we also had key differences and so I never linked myself with the disorder. It was actually a teacher at the college who suggested I might have AS as she had a son with the same condition. I can't recall how this came up in conversation, but it might have stemmed from e-mails. Anyway, the more I thought on it, the more I thought "actually, this makes sense"... of course when my parents found out a teacher had said that, they went absolutely crazy mad at me. I kinda concur that it's not a teacher's place to make those kind of judgements, but if the link between my personality and AS hadn't been made, I wouldn't have made it through college... and I don't just mean dropping out. I was in a very dark place back then, and some reason and meaning behind my difficulties was one of the few lights that guided me out of that seemingly endless tunnel.

Actually getting a professional diagnosis took a lot of effort. I neither had the independence nor the confidence to make an appointment with my GP myself, and my parents weren't about to let me either. But the increasing expectations of independence and ability my parents were placing upon me around that time were literally killing me.... heck they even accused my anxiety issues as being laziness in disguise. It wasn't until after I had done 2 years at university that my parents FINALLY booked an appointment with my GP for me to discuss it. Of course, that was where further difficulty came in, because my GP's view on the process of getting a diagnosis was that I needed to see a counselling psychologist first... he referred me to the psychologist he thought would help, but I e-mailed them, and they said it wasn't within their abilities to make a diagnosis or refer me to any diagnostic service. Eventually, my doctor managed to get in touch with the right people and after a looooong wait, I was finally able to get a diagnosis.

So yeah, I both know what it's like to incorrectly self-diagnose AND what it's like to have difficulty in getting a professional diagnosis. My hindsight-driven view is that you can't really say "I have this" as if your self-diagnosis is gospel... one should always treat a self-diagnosis as "I MIGHT have this" (I guess it's not a self-diagnosis at that point, but I'm sure you get what I mean). If someone is certain enough to believe it so strongly and it effects them enough that they need the support or recognition getting a diagnosis brings, they should try to get a professional diagnosis. I never technically self-diagnosed myself with Asperger syndrome, but I believed it so strongly possible that it drove me on. Of course, my family all accused me of self-diagnosing, but I guess they were worried (though with my parents, I suspect more worried about themselves than me, else they'd've supported me in getting tested).

The most helpful thing about getting my diagnosis is that it began to change how my parents treated me. They stopped being so forceful and demeaning and slowly started becoming more understanding and helpful. This allowed me to climb out of the pit of depression I had been stuck in throughout most of my teenage years. And I think this is the value of a diagnosis - understanding and patience. Naturally, it can be exploited either way (stereotyping making it bad for for the person diagnosed, using it as an excuse making it bad for everyone else).

So that's my experience, take what you will out of it.

I think that an "autist" refusing a diagnosis is most probably not an autist.