Self Dxers Who Don't Want a Diagnosis; Why Not?

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If I spent $1500 on an official diagnoses in 2010 instead of putting it a stock fund I'd have $5000 less in my retirement account. Having enough money to retire reduces stress when you are over 50.

I self diagnosed just this year. I had surgery in 2018 for an illness that impaired my thinking, and during my recovery I noticed how different my thinking was compared to before my illness (I am now more "normal"). In reading about autism I finally found the words explaining the confusion and stresses I've felt my entire life. I am still emotionally stunted but I am a little better at understanding people now. I don't think I would be diagnosed autistic if I was tested today (I've modified my behaviour too much) but I am positive I would have been diagnosed as a child if they knew then what they know now about females and masking. Even now I score 32 on the autism test, and only 11 on EQ test.

I don't want a diagnosis because I don't think I'd get one now, and what good would it do. I've read enough to be pretty certain I have asperger's and, I feel much better about myself now. I finally have the words and can now reason things through rather than just feeling unsure and anxious all the time. I finally understand that I am not broken, and there are others out there like me.

I've experimented with turning off the masking when posting here. Aspies seem to prefer my "masked" presentation.

It's not just the US, it's pretty much the same here too. If you have a job, there are literally no services available and the condition is very little understood, even more so in adults. Therapists with a good understanding of the condition are a true rarity and those who don't have it can actually cause a lot of harm.

The only reason I'm diagnosed is because I was never identified. I knew very little about autism before my son was diagnosed and they spotted me during the process.

If this wasn't the case, I wouldn't have bothered. I have no intention whatsoever of telling my employer (it would do more harm than good) and my experiences with telling people were a very mixed bag, leaning more towards negative.


I still consider it a disability, even if I'm doing very well compared to some. The amount of effort, sometimes support from others and workarounds I have to find to be able to deal with "normal" situations regarding work, home-life, social interactions and sensory overload are nowhere near "normal". Spoon theory applies 100% and that was meant for people with chronic illness or disabilities.

Those who function reasonably well and can hold down a job will also sooner or later have to deal with burndown. Mine was more of a massive break-down and it could have destroyed my marriage and career if I didn't have the rare luck to be supported both financially and emotionally through it by my wife. I wasn't diagnosed yet and therapy was completely useless, not only they didn't spot me as being on the spectrum, but they also dismissed the whole thing as "midlife crisis"

I still need a lot that "normal" people don't from others: my wife shields me a lot both in social or sensory-loaded situations and others make allowances for my eccentricities only because they need me and my skills (at work). And I still have to do a lot of masking that's exhausting and always requires very careful planning of my emotional and mental resources.

Things are slowly improving and I hope we'll see an increase in trained professionals who understand the condition and also more professional training programs for people on the spectrum, that would really make the financial and bureaucratic effort of getting a diagnosis worth it.

I have been told over the years by several therapists I have it but very mild. The guy that just put it on my formal diagnosis pointed out several traits I had but said "I'm really high functioning" so what's the point in going through the "full" evaluation? I already get disabled benefits for being bipolar which is far worse now. As a child I think my autism severity level would have been higher.

That's interesting. There are different kinds of "masking," of course. What kind of masking are you referring to here?

For all of us here in an online forum, it's probably NOT a good idea to just quickly type whatever pops into our heads and them immediately click "Submit." If re-reading what we wrote to make sure we didn't say anything unduly offensive constitutes "masking," then, yes, in that sense, we need to mask even here.

However, some kinds of masking are more arduous than others. Simply trying to be considerate towards other people is one thing. Conforming to arbitrary social norms, just to pretend that your nervous system works differently than it does, is something else.

In a more autistic-friendly world, or in an autistic-friendly subculture, we would still need to learn to be considerate towards other people, but we wouldn't be pressured to imitate culturally mainstream NT body language, eye contact rhythms, etc. We also would not be pressured to pretend to like foods we can't stand, etc.

I have already had 2 mental health professionals tell me I'm really likely on the spectrum. I just don't want a formal diagnosis because:

1. It's expensive
2. I fear it'd exclude me from some types of jobs.
3. I'm not sure what I'd have to gain from a formal DX besides peace of mind. I function well enough that with group and individual therapy (which I can already afford) I am pretty much okay in my day-to-day life without disability services. I just assume leave those kinds of funds for people who need it more badly than I do.

Appearances are the benchmark by which the normative world judges our abilities, yet in the ASD community we know this outward presentation comes at a great cost, to undermine this cost is to take a normative approach, validating and even worse again regurgitating the ignorance.

A race to the bottom mindset causes segregation invalidation and censorship. Its counterproductive, I see it as a red flag signalling the externalisation of internal issues with a cavalier attitude to those caught in the consequences of this approach.

A loved one is on the spectrum too and he masks when necessary, at a cost, it's not just a female phenomenon... for a long time, to my embarrassment I admit to thinking that women done it more, so therefore the cost to women was more significant.

Yet that's taking the same type of normative ignorance and applying it to our own neurotribe as such. The cost of masking is relative to each individuals situation and environment... you've met one person with autism type reality.

If masking ability is the benchmark used for what differentiates difference from disability then from my perspective the person truly needs to educate themselves more on Autism, but not at the expense of other peers.
Or experience one of those life changing curve balls that shatters the supportive bubble they take for granted, that works quite effectively from personal experience.

You know... you touched something important in me.
Yes, I'm afraid of it but not as much on the level of overall diagnosis as on the level of denying my particular symptoms.
I have grown up in a culture of denial with a typical scenario:
magz: Mom, I have a problem.
mom: No, you don't have a problem.
magz: But...
mom: You don't have a problem!
magz: But I...
mom: You don't have any problems! People during WWII, they had problems, not you, you selfish, narcissistic scum!
magz: I just...
mom: YOU'RE HARMING ME! YOU ARE EVIL NARCISSIST TO HARM ME LIKE THAT!

And, you know, after growing up like that, it's became extremely hard for me to open up about my problems / difficulties / symptoms (a bit easier online) and fear that they would be met with denial is a very serious issue.

Someone in the next generation of my extended family is taking ADHD medication, and she seems to be benefitting.

The only thing I might add is that since many of us in the spectrum are sensitive to medication, maybe start with halfies. Now, many of these medications take weeks to start to see the therapeutic effect and this does complicate matters. And often, the side effects do settle anyway. I still think halfies at the beginning is a viable option.

Telling the obvious truth. Lying or shading the truth works better, even here.

Most people don't want to know what you would do. They want you to reassure them that what they intend to do is best.

I have a job and everything----but I doubt that I am where I "should be" based upon me as a person. I'm a data-entry clerk. I feel like I should be a "leader" in something. But there's something in me that's preventing me from being a leader in anything.

I feel like I'm eminently disabled in at least one aspect: being able to be a teacher to a class of students. I just can't do it. There are many people who don't seem to "have it on the ball" who do really well in managing a class of students, and inducing learning in all these kids.

Thank you. Yes I'm a halfie or even a quartery person with meds! I was pleased that my ADHD neuropsychiatrist was aware of the fact most autistic people benefit most from very small doses of their prescriptions. I sense he's going to overhaul my medication regime when I get my official diagnosis at the end of the month. He's a big believer in low doses if they work best.

You're a teacher here though. How many have benefitted or been enriched from your wisdom? In our cutthroat ambitious society goals are taught to us from a young age. It is woven into us that we are to 'do well for ourselves', achieve great things, climb the highest mountains, make a boatload of cash, and strive to higher and higher authority/position. You are a leader however Kraftie. You lead your household. You have a wife. That is immeasurable success to me. Your writing style is complex and very intelligent. You have been elevated to sainthood.

I've made minimum wage and I've made 100 g's per year. It is all absolutely completely meaningless. What you have in your life are true riches.

And the field of psychology itself is a crappy field.

The word “narcissist” is an example of the Freudian theory basically just coming up with a meaty, harsh insult, when it’s supposed to be a non-judgmental, scientific description.

And the whole Freudian theory is an example of a castle built in the air. It’s a very complex theory, but without a lot of connection to actual facts. And instead of embracing or at least finding interesting the areas in which facts contradict theories, the believers tend to deprecate the facts (the theory might be bigger in Europe than here in the States).

Freudianism really should have 2/3’s faded away, keeping one third because it’s interesting and is sometimes, occasionally kind of true.

PS I’m sorry your mother was such a work of art. She certainly sounds like such! ! !

I have a high-paying job, husband and children: I have ASD. If I was able to validate myself, I would have. But I am not, so I chose to get diagnosed because my internal experience is complete chaos and I have a stress threshold (high, but critical) that I reach where my BAP appearance is out the window and Autism is IN. I am sick of folks telling me I am "fine". I was DX'd with "mild to moderate" ASD. Plus I am VERY nervous around police and medical situations b/c I have had traumatic events related to my outstanding outward appearance giving way to misunderstandings (to say the least). Just as someone with severe ASD might be misjudged in areas where they are moderate to mild, so too are those with mild ASD misjudged in areas where they are moderate to severe.