Why do some autistic people refuse to get a diagnosis?

Post Reply New Topic

It may or may have not have been a fad diagnoses in the 1970's but it was called by the more accurate term "manic depression" in the 1970's. In the late 1960's Jimi Hendrix wrote a great song about it.

Last edited by ASPartOfMe on 02 Mar 2016, 1:39 pm, edited 2 times in total.

More probably in denial

Autist are happy to understand why they do not fit among NT, quite happy to know what they should change to fit in.

I'm a happy autist, NTs, they are saaad, aaangry, ...

Not everyone is the same,denial is a pretty common psychological response to stress.

I expect that these are the reasons, even if they are currently unfounded (at least in the US, don't know about elsewhere). Medical diagnoses are kept private because of doctor-patient confidentiality and HIPAA medical privacy laws. People may not like President Obama's healthcare plan, but one thing he did add was a clause that makes it so a pre-existing condition is still covered if you change insurance plans. Having a chronic condition might have prevented one from getting health or life insurance before this, or at least prevent treatment for that condition for one year. Laws like the Americans With Disabilities Act and Equal Employment Opportunity are meant to protect one from employment discrimination, although this often does not work out in real life. Some jobs do require the disclosure of mental health conditions if they require a security clearance. Personally, I'd be happy to have 10 autistics doing classified work (at least as analysts, we'd probably be rubbish at field work).

HOWEVER, before we think people are being paranoid about whether this could get back to their employer or insurance, keep in mind that laws can change. A conservative Congress may decide that the ADA is too much a burden on Business, or the Supreme Court may decide that mandating health insurance for pre-existing conditions is unconstitutional. Also, the privacy of our records is not guaranteed. Every two or three months, I read some story about the medical records of a major hospital or the employment records of a large institution like the Office of Personnel Management being hacked.

I'm not saying, "don't get a diagnosis," but I can understand those who might be reticent.

Not for autists learning their diagnosis, no denial! For autists, the diagnosis eventually "explains everything". That is what i felt when diagnosed. What they all feel, sorry. We autists, take the diagnosis as a compliment because we know what it really means, a lot of qualities (honesty, sensitivity, gift for analysis, eye for details and often other gifts,...) and explanations of the crazy NT world we live in.

Diagnosis is the best moment in our life, it is freedom and understanding. NTs can’t understand that this diagnosis makes us happy because NTs haven’t been diagnosed “liars, insensitivity, low ability for analysis, superficiality, and few gifts,...)

It was a very positive moment for me but reading posts here for 2 1/2 years has taught me it is not positive for plenty of people. There have been posts where it had taken years even a decade to get over the denial. Others get very depressed because it is a lifelong condition thus squelching any remaining hopes of being normal.

By comparing themselves with others.

There's nothing about autism that makes it impossible to self-diagnose it. In fact, my own research shows that self-diagnosed people don't substantially differ from officially diagnosed people, suggesting that it's actually a particularly easy condition to accurately self-diagnose.

Last edited by Ettina on 04 Mar 2016, 6:22 am, edited 1 time in total.

I have never heard anyone claim that not all aspies have bad social skills. Can you point to an example?

As for reading body language, that's only one part of social interaction. A person can be good at reading body language and still have social features that meet criteria for autism, such as poor theory of mind, aloofness, etc. Eye contact, too, is not universally affected. (Incidentally, I don't have any theory of mind issues, and I have an official diagnosis. My social impairment comes mainly from difficulty reading nonverbal cues and reduced feeling of embarrassment.)

Lastly, an official diagnosis doesn't solve these issues. There have been psychopaths who have been officially misdiagnosed as aspies. If you're a skilled liar and manipulator, it's not really that hard to convince a clinician that you have whatever diagnosis you want to have. And clinicians can also misdiagnose on their own accord - my brother saw a clinician who misused several ADHD measures and flat-out made up some others to claim my brother had ADHD. Which he clearly doesn't - he has no trouble paying attention to anything except homework.



I've benefited from telling people about my autism (officially diagnosed, but I self-identified before then). I've found many people are less likely to take offence and more likely to explain things clearly to me once I tell them I have trouble reading nonverbal cues. In university, beyond the services that I get only because I have an official diagnosis, I've also found that if I tell university profs 'I have trouble with X, Y and Z because I'm autistic, and you could help me by doing A, B, and C' they will very often do it.

I have gotten a few negative reactions, but the vast majority of people I've told have reacted positively.

If one day i am diagnosed NT, i will have strong denial, i could never accept the idea of being an NT, too hard...
I could not accept such an insult.

Or perhaps many of those NTs are *not* insensitive, superficial liars with a low ability for analysis and few gifts.

As someone who is self-diagnosed, or at least strongly self-suspects, I have never seen the use in getting an official diagnosis. I know I have many problems. They don't need a name.

Firstly, I have no insurance and cannot afford it. I'm in that lovely gray area of makes too much for help but not enough to afford insurance. I don't qualify for any charity care or sliding scale services due to my income being too high (which is absurd).

I am totally against taking psych drugs, so a psychiatrist is useless to me. I'm not interested in experiencing any of the side effects, and am afraid of what parts of me will be lost as I try to "fix" myself.

I have no one I wish to "prove" myself to as far as needing to justify my behavior. The only person in the world who's opinion I care about, my wife, just wants me to reign in some of my less desirable traits like my persistent negativity and a few others, which I do. I am lucky to be very gifted at introspective analysis. I knwo myself. I can visualize my thought processes in many ways. I may not know what all of these things are called clinically, but I don't care. My only goal is to find contentment in life. Slapping a label on me will only serve to limit that. I'm good enough at limiting myself. I don't need any help.

Plus the entire field of psychology seems to be so inaccurate and based way too much on a clinician's opinion. You can't do a blood test or MRI for Autism, ADHD, BPD or any other psych disorder. It all appears to be a lot of guesswork, and the definitions of disorders often contain seemingly so much overlap that individual conditions seem to be hard to discern anyway. If I did get "diagnosed", there's nothing guaranteeing it'll be accurate and could actually be counterproductive. I once was put on anti-psychotic meds (didn't take them but three days) after just one visit. I don't see this as responsible in the slightest. Treating people the wrong way can be worse than getting no treatment at all.

The mind is such an individual thing. I just don't think there are many people who can help me understand it and how I need to work with it better than I do.

I'm 'self-diagnosed'.

There are a few reasons why I don't intend to receive a diagnosis and none are because I don't think I'd get it, or because I'm faking it. Here they are, in summary:

- At nearing 30 I have learned, fairly well, to cope with my situation. Some aspects of being NT I have learned to rehearse and get good at, others I'm always going to be useless at, but the point is that I am getting by happily enough with my lot. I'd say I'm pretty high functioning and there's a lot that I wish I didn't have to deal with, but all in all I am managing very well.

- There is nothing that a diagnosis would do for me, except confirm it as a label. Any support that will benefit me, I feel I'm better off finding in communities like this than in a formal setting.

- A diagnosis can take a long time to get. There is a lot of effort involved, including probably delving into my past which is simply not going to work. It also sounds like a very uncomfortable experience - lots of conversations with people and trying to explain myself, which is the last thing I want.

- There are so many people struggling far more than I am. Younger people, for example, and those struggling more day to day. Resources are already stretched and people that really need the help are waiting years for a chance to get their diagnosis. As someone that is getting by without, I am not going to risk delaying someone else receiving a much needed label.

My self diagnosis is enough. I don't need official support. I don't need to use the label with people that I know and there is no benefit to me doing so, as far as I can see. Strongly believing that I have autism helps me to understand and forgive myself, but I suspect that actually using that term as a label brings a whole host of other problems like people thinking I'm attention seeking if I don't seem autistic enough, or suddenly thinking that I'm 'mentally ill' in some way. As someone above said, I don't need to prove myself to people. They need only know me as me - it doesn't matter why I am like I am.

That's cool by me.

I'm in a similar boat. I'm capable enough as I am that I'm able to get up each morning and get to class and feed myself etc. that the only real formal help I foresee myself needing is just support from the people around me to be my best. The only accommodation I qualified for at my college was longer exam time, and that alone is making a big difference when it comes to my anxiety while taking tests.

For my part, I would really, really like to know, but since from what I have read,
-a diagnosis is still rather arbitrary and uncertain, and
-it also seems that actually getting a diagnosis around here might take years of queueing, and
-there are no obvious gains to get from one, and
-I am not currently in a hard living situation,
there would be no point of trying.