Why do some autistic people refuse to get a diagnosis?

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As with most fads and momentary "me too"-ism, I believe that the instantly self-identified tend to wake up one morning, say a few weeks or months after their enlistment among the autistic ranks, and forget that they had once believed it so strongly.

In other words, their self-identity doesn't have staying power. They lose interest quick and move on to the next Comic Con event or back to their television.

Those of us who stuck with it for months and years as self-identified are different. We tend to get diagnoses eventually that prove our prior self-identification. Let's not combine the two camps into one monolithic group of selfish and self-centered individuals. We aren't that.

As long as there is so much gender bias, ageist bias, confusion and ignorance amongst the diagnostic community, self-diagnosis will continue to be an important and sometimes life-saving device for the many people on the spectrum. It should also be borne in mind that the much changing diagnostic criteria in the DSM is not well anchored in definitive research and is derived from opinion which changes with each edition. This topic has already been extensively covered on WP (sometimes viciously). Here are some references from the past which elaborate the issues again:


http://neurowonderful.tumblr.com/post/8 ... s-pros-and

Also see (via Google):
Abnormaldiversity- Accuracy of Autism Self-Diagnosis
The Myth of "Official": autism and self-diagnosis skeptics

So far, the only people I know of who have used autism or Asperger's as an excuse for their poor social skills or quirkiness are celebrities like Jerry Seinfeld and maybe Dan Ackroyd, who can get away with a higher level of eccentricity. Remember:
Rich person = eccentric
Poor person = weirdo

Celebrities will wave around the Asperger self-label in some off-the-cuff remark about how they always felt different as a child, and how it influenced their Art, and then withdraw it real fast when someone points out what the diagnosis really means. These guys know practically nothing about the symptoms, and are just playing at being the rebel/outsider.

For the rest of us, there's no advantage in going public as an autistic. It doesn't excuse our oddities, and tends to make people treat us like freaks, idiots, children, or dangerous psychos. I have told doctors my diagnosis only to have them start speaking to me in baby talk. Then I trot out as many three-syllable words as possible and discuss my neurology, genetics, and pharmacological regimen. I'd quote Latin at them if I thought it would help. Most doctors look like they just heard a monkey start quoting the Bhagavad Gita.

For those who have been researching the subject for months, it indicates a serious dedication and obsessive interest that would certainly qualify as an autistic "Special Interest." I personally don't know anybody that claims autism in real life without an official diagnosis, except at autism support groups, and these people seem pretty autistic to me.

Great citations, B19! I liked especially the statement that "...self-diagnosis is self-advocacy."

Thank you AspieUtah.

I have strong feelings about the unnecessary promotion of division between people on the spectrum, which seems to particuarly stem from threads dealing with the diagnostic topic (but which rarely if ever address diagnostic validity and reliability issues) because both groups have a huge lifetime experience of being invalidated. WP as a website founded to promote inclusivity has done both a great service. The relationship of continual invalidation to depression and anxiety is a no brainer to me, and so sensitivity is called for whenever this topic rears its contentious head again..

This undiagnosed woman's account is particularly heartrending, I think:

http://www.mamamia.com.au/i-may-have-as ... -syndrome/

Wow. What an amazing story! So much of it could be my story ... actually, all of our stories. I hadn't ever thought that anxiety itself might be a reason that some autistic people refuse to get a diagnosis. Self-identity in this case would make profound sense. In this case, unless there is a governmental or educational reason to get a diagnosis, one shouldn't necessarily be sought. Indeed, self-identification becomes much more important.

Thanks again, B19!

There are other issues related to this topic too. I frequently read blogs by apparently well-qualified practitioners who misleadingly describe - even in Psychology Today for example - Aspergers Syndrome as "mental illness". It is understandable - to me anyway - that this would deter some people from ever seeking a formal diagnosis. (AS is not a mental illness, as we know, it is a neurological difference).

Until the stigmatising attitudes held by many professionals (who should know better, IMO) diminish, many people will be content to recognise their status on the spectrum without exposing themselves to further prejudice; it is something that everyone on the spectrum has usually experienced more than enough of already during their lifetime, even those younger members of WP.

As someone who spent many years around the qualified psychology community, I can assure anyone who hasn't that as a discipline it is very far from being free of the prejudices found in the lay community - you find the same prejudices and they are disguised behind the obscuring veil of professional objectivity in not a few cases. Unfortunately critical theory is not yet a standard part of the training, and psychology and psychiatry have been (and still are) very greatly affected by political attitudes and myths from their inception.

Yes. This includes misdiagnoses of autism as something other than autism. Over six or seven years when I was a teen-aged kid, I received no less than five diagnoses for various depressive disorders because it was the closest diagnosis of my autistic characteristics (preferred solitude, few or no friends, autodidactic knowledge; clearly depressed!). I have read that this mistake persists today.

The thing is that no one has to know that you have any disorders,of course they will find out you are different once they get to know you but there is no benefit for the person suffering to share it.People in the real world could care less if you have autism or a psychological disorder. All they care about is how your behavior affects them personally.My whole family suffers from mental ailments and there is nothing worse than not having anyone stable to lean on.

Stigmatisation of any kind of neurological difference is very real and very well documented. The high rate of bullying perpetrated on people on the spectrum and other forms of discrimination are also very real. "People could care less..?"
Nearly every thread in every forum of WP for years testifies to the opposite of what you assert there, unfortunately. If people could not care less, I doubt there would even be a need for WP. To live in a world without profound structural discrimination against autistic people is probably every autist's deepest wish...I know it is mine.

I think you misunderstood DonTrump's last post. I believe he meant that in general people won't be more understanding of any problematic behavior just because they know you're autistic or you have this or that.

Anyway, I agree with whoever said we shouldn't be questioning the validity of people who are questioning, like myself. I have a related question. If a diagnosis can be received in a timely enough matter...is it worth it to try to get one to participate in a job readiness program?

I got a diagnosis specifically to receive help and support for problems associated with autism, so that I can be successful and have a normal life.

Many programs aren't available without a diagnosis, so if a person wants help specifically for autism, I'd say an official diagnosis is worth it. I'm focusing on finishing a degree and getting a decent job, while learning to be more responsible. Improving social skills is also on the list.

I feel this way too, i know a lot of people in real life that have autism TRAITS but definitely dont qualify for a diagnoses and probably fit better in the social anxiety, OCD, ADHD, and Introvert category, and some people out there who i swear are autistic but end up not having it or being diagnosed with something else entirely.

maybe its because i never suspected myself to be autistic and actually didn't even realize my symptoms were symptoms of anything. Like i didn't KNOW i couldn't make eye contact, read body language or take things literally, i had no concept of eye contact and body language before the age of 13. I also had no idea the level of sensitivity i felt was sensitive, i knew i became overloaded in places like malls and school but i thought EVERYONE did it, i thought EVERYONE felt like crying walking next to a busy street, i thought it was normal that i had meltdowns when a plane would pass by.

Everyone here knows that Don Trump is a self-admitted malignant narcissist, right? Not a person with ASD.

The benefit, as I see it, is that one can form community with others who have ASD. We are a people who don't normally form social connections or community easily. We are natural loners, and this is often not our choice. We are the perennial outsider, the weirdo, freak, last one picked for the team, out of step with the rest of humanity. On WP and in real life, we can find other people who FINALLY understand us and what we are going through. It's not really important what the rest of the world thinks, only that we are able to understand and be understood.

I think in a lot of ways, this yearning to find connection for the first time in our lives is unique compared to other mental conditions like schizophrenia, bipolar disorder, depression, or, (I presume) narcissism. People with other neurological conditions or mental illnesses may seek out support groups, but I don't think they form the kind of community identity that NT minorities like Deaf society or an ethnic group might form, for socializing and political awareness and advocacy. Many people with mental illness are still capable of being a part of society, and still know how to socialize and appear to be normal. Being autistic sometimes means that hiding our condition is not an option--certain things are beyond our ability to conceal or change.

I've been researching asperger's/asd for at least 6 months and I heavily suspect that I have asperger's. Someday I do want to get a diagnosis, but money and fear keeps me from doing so, at least for now. I'm afraid I won't be taken seriously, or that I'll get diagnosed with social anxiety or something similar. I'm also afraid that maybe I am not on the spectrum, because then what would explain all the things I have such a hard time with? But then after I spend a good 10-20 minutes plugging my ears whilst rocking back and forth because I couldn't handle the sound of someone breathing in their sleep, I'm reassured that I have to be an aspie.