Self-Dx'd Aspies: How Do You Help Yourselves?

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I was giving this matter some thought this evening, and was curious about what those of you with self diagnoses do to help yourselves with autism, given that you don't have official services available, or an "official claim" to the autism label, as society sees it. I remember for the 2+ years of my self-diagnosis, I didn't get much beyond understanding my sensory issues, and adapting my surroundings accordingly, but I realise now that it would have been beneficial if I'd done more to put supports in place for myself where I could. I didn't get an autism wallet card or medical bracelet until after my diagnosis, because I didn't feel I had a right to use the title, but it didn't change the fact that, had I been in an emergency, my undiagnosed reactions to stress (shut-down, stimming, going non-verbal) would need as much explaining as they do now that they have an official label. I was also reluctant to advocate for my need for accommodation in social situations, like having idioms or jokes explained, or being able to leave when the sensory overload became overwhelming. I was afraid that if I asked for these things, and other people asked why, my telling them, "I think I have autism" would make them laugh derisively and ignore me. Equally, I was concerned that if all I said was, "I have trouble understanding non-literal language", or, "too much socialising wears me out" without mentioning the autism, they'd dismiss it as me overreacting to a personality quirk, and still ignore me.

So, my question for those of you who self-diagnose is, do you experience similar problems, or do you treat your diagnosis with the same weight as a doctor's and use it as such where it's needed, such as in social situations or emergencies? What have the reactions of those around you been like? Do you find support, or do people tend not to believe you?

When you test as high as you can go for talent
and as low as you can go for social and communication skills,
you don't get a whole lot of sympathy.
Picture a Q trying to fit in with and be accepted by mortals
and live to tell about it ...

This year I plan to spend more time creating art,
something which I'm successful at ...
and less time beating my head against a brick wall
trying to make friends with people who claim to follow IDIC
but who feel intimidated, threatened, insecure, inadequate, and scared
at the first sign of someone who's different,
no matter how hard I try to be friendly
and all the things I do in an attempt to prove myself.

Star Trek fans in clubs who hold the rank of Captain or above?
Tend not to like me much ... all I have to do is show up
and they seem to feel challenged.

I do tend to get along well with
people with exceptionally high IQs,
and artists,
as far as good conversations anyways.

I had a best friend who knew I was Aspie.
I think she was one too, but I lost her to heart disease.

I have a couple of more casual NT friends that I've told ...
non-Star Trek fans, very normal and down to Earth.
It's taken them awhile, but they seem more accepting now.

Pretty much though I'm inclined to head back to the Continuum.

...

I had a lot of self-doubt during my year of self-diagnosis. Was this real or not? It wasn't helped much by the fact that my regular psychiatrist laughed in my face when I brought up the idea. I fired her, and the second wasn't much better, but at least she was willing to refer me for diagnosis. I didn't reach out to any support groups outside of the internet until I was diagnosed, because I was afraid of rejection. I just felt really fragile. Before the diagnosis, I tried telling my boss that I wasn't forgetting to follow the rules on purpose. She didn't believe me--she thought I was being defiant. It wasn't until I got the diagnosis and disclosed it that she started taking it seriously.

Before my diagnosis in 2015, I self-identified (self-diagnosed) after my screening in 2014. So, I self-identified longer than I have been diagnosed. Admittedly, I am, as one of my diagnosticians described, “very, very mildly autistic with high intelligence.” So, my experiences might not comport with those of others.

Immediately, family members and friends accepted my screening-test results as probably accurate given the tests’ statistical accuracy. They were already aware of my sensory sensitivities. They also understood and accepted my diagnosed co-morbids of GAD and OCPD. Apart from my social approach severity, my characteristics and co-morbids are manageable without professional intervention.

Because of my physical disabilities (spinal and central-nervous), I was already receiving Social Security SSI and Medicaid benefits. Nothing there has changed for me. The services I need after my ASD diagnosis are no different now than they were then; in other words, nothing specific.

During the time that I self-identified, I attended a small local Asperger Support Group, and acted on my belief that I was autistic in the ways I described herein. For these few accommodations, no one ever questioned or doubted me. I didn’t intend to deceive or pretend to have been diagnosed when I wasn’t. But, I stated the facts: I had been “screened with autism” and was “pursuing a diagnosis.” These statements were true. Some individuals asked me for more detailed explanations, but were satisfied when I answered their questions.

I would say that my understanding of my self identification, and all its various intricacies convinced others. My study of diagnostic criteria, published research studies and my own characteristics and co-morbids increased my ability to convince others. In fact, the knowledge I gained over 18 months aided my diagnosticians who ultimately offered to refund a portion of my diagnostic fees because I had “saved them a lot of work.”

So, for those who wish to self-identify as autistic, doing your own research is critical to your ability to know which characteristics and co-morbids need attention in clinical conditions. While mine didn’t need such attention, others need to know enough about themselves to become and act efficiently as their own best advocate … whether they pursue a diagnosis or not.

Yes, it reminds me of the TNG episode about the new science officer aboard the Enterprise D who didn't realise she was a Q until "the" Q showed up and tried to take her back to the continuum. Hard as she tried, she just couldn't fit in with the mortals, and wound up returning to the continuum in an effort to do some good in the universe.

I sympathize with the fear of rejection/criticism from claiming a problem I'm not specifically diagnosed with. I do occasionally cite the symptoms ("bad at understanding speech," etc.), and less often, I'll say something about "some kind of neurological problem" that is currently unidentified. I am fortunate that I am diagnosed with ADHD, so I can play that card if I need it. It was just from my GP verbally giving me a DSM4-inspired screening test, but it was good enough for them to give me a doctor's note (written statement that I'm being treated for ADHD). A good chunk of my problems aren't established ADHD symptoms, but it's not like anyone knows that.

I haven't sought many accommodations though. My main self-help deals with sensory stuff. I also research a lot of communication/relationship stuff, although that's separate from the self-diagnosis.

With my friends, it doesn't really matter what I'm diagnosed with or if my problems actually are just a personal "quirk."

It's hard to work in a group when you're omnipotent.

Good greetings, Darmok,

I have a bracelet with that quote stamped on it. * grin *

Meanwhile, when one darkens, there are four lights.

Now there are three black holes ...

Q (One of these days, I may have to create a new account)

Good greetings, StarTrekker,

Your words are helpful. Especially since the annual Anniversary Banquet is coming up for the local club aka "starship" of which I'm a member. I intend to go so I can present a Spirit of Adventure award, and it's been rumored that I may win an award. In the past I've hinted to them that Starfleet was becoming a distraction to my creative pursuits, but now that I've had plenty of time for observation, I'm feeling it even more strongly ... to the point where IRL, I've just invested in and set up my own professional art website.

Things would be different if I'd made an actual friend aboard ship ... As it is, people there are happy enough to have me around helping out and seem glad to see me when I'm there, but it seems like any "friendships" I have are pretty much confined to when I'm physically at a club meeting or an event, and don't extend to the real world, beyond the odd e-mail or Facebook like ... Because I live so far away, besides being so very different.

So I suppose (to stay on topic) that I help myself by observing reality and acting on it as best I can to move forward along my path, where I'm the different drummer. What else is there?

the phoenix who is considering creating an account as Q

Before my diagnosis, I did the following:

* (mostly) stopped blaming myself for things I couldn't help because I understood the reason for them

* avoided situations that cause sensory overload

* started volunteering with autistic kids, so I felt less alone

* mimicked the stims of some of the kids I worked with, to reduce overload

* got a watch that beeped at certain times to make me less likely to forget what I needed to do

None of those required a diagnosis, and they all helped me. Even now, the only coping strategy I use that actually requires my diagnosis is getting exam accomodations at university.

Around where I live, it doesn't matter if your self diagnosed if your over the age of 18. There is no help for adults with autism regardless of diagnoses. It's like your cured the day you turn 18. I see a counselor who deals with kids on the spectrum. She does see adults as well, but I'm the only one on the spectrum. When I first started seeing her, she tried finding something or someone that deals with adults, and was surprised to not find anything.

Through this forum I was able to find a support group for adults with Asperger's in a nearby city. They have recommended a couple of books for adults with autism, but I can't make sense of non-fictional material past a few paragraphs. For me, reading books on how to deal with my autism without any form of class, is like the Harry Potter book where they have to read about magic but not practice it. In shorter words, self help books don't work for me.

I'm still trying to figure out what I can do about my autism. Half of what I figured out about my autism, I learned from this forum.