Why do some autistic people refuse to get a diagnosis?

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It isn't like the diagnosis changes something in your brain. If you are autistic a piece of paper/a doctor telling you you have it isn't going to make physiological change in your brain. Autism is not a contagious disease transmitted by knowledge. I almost feel like people that get diagnosed are higher functioning than those that do not. Atleast the people that get diagnosed are trying to figure themselves out so they can develop better coping mechanisms.I also dislike the people that self DX when they could potentially be schizoids,avoidants,social anxiety ect. Autism is not a disease or a psychological disorder,it is a neurological disorder.

1. Price
2. Distance from an able diagnostician
3. Misdiagnosis based on ability of the diagnostician
4. Lack of self awareness/motivation

Some people "refuse" to obtain an official diagnosis because they can not afford it. Either their insurance does not cover the testing, or they have no insurance and no money to get it.

Others may fear that an official diagnosis would contradict their own self-diagnosis.

Still others believe that self-diagnosis from reading Wikipedia and taking a few on-line tests is more accurate than consulting with a person who has earned a doctorate in clinical psychology or psychiatry, with specialization in autism spectrum disorders.

How is a true autistic person going to diagnose themselves if they have no conscious awareness of what it is like not to have autism. Diagnosing yourself sets a very dangerous precedent and the consequences are detrimental.A psychological disorder can be mitigated with CBT while a autism DX is a lifelong impairment that should NOT be treated lightly.

Lots of reasons, I suppose.

1. One might be refusing to believe it because of the stereotypes associated with the word, thinking it's like "Rainman" or some badge of shame. It was easier back when "Asperger's" was a diagnosis in the US. It had fewer negative connotations.

2. It is REALLY hard to find someone qualified to do the diagnosis. I very much wanted to get diagnosed, and it took months to find someone who could do it, who was covered by my insurance, and then I was put on a waiting list. The whole thing took 8 months.

3. Price--a lot of insurance companies don't pay for it, and it costs over $1,000 US

4. What will the neighbors think? This is a big concern if one is older. Lots of people come from a generation in which going to any kind of psychologist/psychiatrist meant you were sick, messed up, weak, and "airing dirty laundry" or talking about family secrets. They seem to have this idea that their diagnosis will wind up in the local newspaper.

5. What will the piece of paper help, exactly? Since I got diagnosed, I've had a really hard time finding anyone qualified to treat autism in adults. The diagnostician referred me to two therapists that didn't take adults. A lot of clinicians won't take adults, and many more know nothing about it. Last month, a psychiatrist told me I couldn't have autism because I had a job, a spouse, was too articulate, and not weird enough. And this was after talking to me for only 15 minutes. AND I ALREADY HAVE A DIAGNOSIS. What. A. Jerk.

I was "self-diagnosed" (we prefer the phrase "self-identified") as autistic for 19 months immediately before my wildly successful "official" "professional" and "clinical" diagnosis at a large university. The research that I did about myself and autism during those 19 months was so accurately described in my own published paperwork that the diagnostic staffers offered to refund some of the $1,000 fee because I had "done so much of the work" they were prepared to do, but didn't because it was done for them.

Sometimes, just sometimes, self-identified autistic people really, truly are autistic. It isn't rocket science. I joked with my diagnosticians that "if someone spends 19 months research themself and autism ... they already have it." The diagnosticians agreed.

Last edited by AspieUtah on 01 Mar 2016, 8:17 pm, edited 1 time in total.

It's not an identity though,it is a neurological disorder. It isn't rocket science,but how do you know you are not a schizoid for example. I just think it is extremely dangerous to diagnose yourself when there are too many disorders that match similar symptoms. There is simply too much overlap. Autism is not something you identify with because when you have it even if you don't identify with it you still have it.

Because I have a university's clinical diagnostic report saying that my personal report was an influential part of my diagnosis. They quoted from it liberally.

By the way, I did NOT "diagnose" myself.

People who do not seek diagnosis may not always be autie tourists (I hereby claim copyright on autie tourists) .

I was once a suspected and not yet diagnosed too, as were many of us.

I got the point though, and it's legitimate, but try to have a little more compassion.

It appears to me that this topic is merely to have a debate about self diagnoses. If so, it is in the wrong sub forum. Try moving it to Politics, Philosophy, and Religion.

My reply was to OP and not you, sorry.

So was mine. Sorry to confuse things.

Good.

I agreed with you.

Thank you. It is just that, for too many Wrong Planet users, they believe that their own diagnosis is legitimate while others (however received) must have flaws. They stick their noses into the business of others, demanding "papers" and other proof of similarly legitimate diagnoses. This argument has been raging at least for the last couple years. Now, it seems that, failing any good arguments lately, they have resorted to baiting the question.

Well, my own experience seems to have trumped their opinion of self-identified autistic individuals.

The problem arises when people say,not all aspies have bad social skills. Not all aspies are bad at reading body language. If these people aren't properly diagnosed they are undermining people with real autism. If someone is good at reading people,good at making eye contact,good at lying,DX'd themselves they are essentially using the autism label to forgive their own personality flaws. Being a difficult person does not mean the person is autistic. Imagine someone without autism claiming they have it just to excuse their bad behaviors,it completely undermines the poor people that truly do suffer from the disorder.

I agree.with aspieutah that is.

We need to welcome those who were once us, try and remember that wonderful feeling of belonging the first time you read about autism/asperger's/spectrum whatever.

I think we are a tribe.