Undiagnosed but diagnosed???

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My doctor is truly phenomenal, and when she was helping me with my mental health of course she asked if there were other concerns. I mentioned that I had a younger sibling who had been diagnosed autistic, and as I learned more I started seeing more and more red flags for myself.

However she quickly dismissed the idea at first, saying I communicated way too well to be on the spectrum, and it was more likely my other mental health issues having autism-like symptoms (if that makes sense?)

I let it go until I read *alot* of other people were told similar things, and just like me were only good at communicating because they either practice and rehearse beforehand, plan for multiple conversational outcomes, or any number of what I now know are called "masking" techniques.

I brought these and other "oddities" about myself to support myself. She gave me a few assessments, both of us agreeing that if the results came back suggesting ASD we would pursue a diagnosis.

They came back "very likely" and "highly likely", so I started contacting doctors for an official diagnosis and maybe learn how to cope better.

Its been a year, and fifteen doctors have refused to speak to me. They won't return calls, emails, nothing. One doctor and I even got so far as to start planning a "chat" feature with our video calls to accommodate my hearing impairment. Then they vanished on me and didn't reply to any other contact. I have no idea.

My doctor encouraged me to keep trying, and frankly I told her I just couldn't take any more rejection/ abandonment. It just doesn't work like that for me- I can't keep coming back for disappointment over and over again. I don't do "hope" (NOT as depressing as it sounds please understand)

In lieu of that she told me to start reading self help books related to autism and coping with diagnosis and use my job's free counseling services.

I know I'm obsessive when it comes to getting the truth, so this is quite a bit frustrating.

Am I "unofficially" diagnosed? Am I autistic? Did I bully my doctor into getting what I wanted? How would I be able to tell? Can I identify as autistic and start using what I learn without a diagnosis or am I just another attention-seeking nobody?

Advice, anecdotes, even telling me straight up I'm a poser is totally cool- at this moment truth is infinitely more important than my feelings. The limbo is maddening. Thank you for your time and sorry I talk so much.

Welcome to Wrong Planet.

It is disgusting the way you have been treated with the exception of that one doctor who is not giving up on you. Neither the phenomenal doctor nor us are qualified to give you a diagnosis.

What we can do is make you further suspect you are autistic to the point that you can move forward under the assumption you are autistic(or not). As you interact with us if you find yourself often saying things like “I feel exactly like that”, “I never knew there are others like me” etc. you can make that assumption.

I know the above is not what you really want and it is not optimal. I hope you can get a proper diagnosis but in lieu of that “self diagnosis” can and has been helpful.

I am on a list to be assesed and have been on this list for a while. The questions one wants answers to... Not an easy yes or no to answer. I wa ted an answer there and then and I did not realize I needed to be assessed.
But in the waiting I have discovered a whole lot about myself that I did not know.

Thank you, and I have been lurking (I'm not creepy I swear ) and the more I read other people's experiences I do see so much of what I've experienced and felt.

Im curious though how to avoid feeling like a liar and carrying around that guilt and shame without a diagnosis. I just want to understand and move on. It feels offensive to everyone else to self diagnose and carry on like I belong. Less dramatic than it sounds, but those are the best words I have to explain.

@Mountain Goat
Yeah... I'm tied between letting go and being as-is, but not knowing just what on earth "as-is" even is.

OccasionalSeagull,

The process of getting an assessment to happen is different in the U.S. (my experience) vs. the U.K. (Mountain Goat's on-going experience). I'm not suggesting you give detailed location information but if folk knew what country you were in then someone more familiar with your country's bureaucracy might be able to help.

Now, here comes so uninformed, clueless wondering...

I don't know if the assessment must be done in-person. Certainly my assessment benefited from me (and my bride) being able to go to the Psychologist's office and talk in person. I don't know if the Pandemic is hindering assessments because it is a disincentive for doing things in person.

You mentioned a hearing impairment and video calls. That would seem like it would hinder the assessor's ability to observe you carefully. Long, long ago I had a deaf friend (his hearing aid was close to useless). He lost his hearing when he was about 8-years old and even as he approached 20-years old you could hear traces of an 8-year old in the way he spoke. I know the Psychologist who did my assessment used listening to me in conversations to help form a diagnosis. Do you know if your hearing impairment is causing the doctors to balk, perhaps because they're not sure whether it would impair their ability to do an assessment?

I have the wonderful privilege of suffering through the US medical system. Love my doctor, hate the system.

I cant even speak to any of the doctors to find out *why* they won't speak to me. Some won't even return my inquiries whether they even have openings. Its literally like I don't exist.
I went so far as to send the doctor who actually did start speaking to me a message 2 weeks after they vanished on me a message just asking 'why'. I informed them like I have here that they were the 13th (at the time) and I was willing to *just* get an assessment and leave- I wouldn't bother them with any therapy or needy anything after that if that was the issue. I was willing to cut down to asking for bare minimum because I know im alot and times are hard for everyone. I can handle myself but only if I have a clear, straightforward understanding of what on earth is going on.
I got nothing in response.

My hearing impairment may be making them wary (moderate-severe loss in one ear, moderate in the other), but my time in the deep south has taught me how to hide alot of my inconvenient features, so I've made sure to let them know I can accommodate them. They don't have to worry too much about rushing to fit *me*, I can more or less fit them. Im not really sure how to make anyone feel more comfortable around me. Thats a very small part of the reason I've stopped actively seeking a doctor. Im so very tired.

“Self Diagnosis” is controversial in this community as well as on the outside so some will take umbrage. When reading this criticism it is natural to wonder if you are faking yourself. While there is nothing wrong with questioning yourself and skepticism, like with most other things too much is destructive. As much as we do not like conflict or offending people at times being selfish is a necessity. The skeptics have not lived your life and won’t be affected by your deciding you are autistic.

Think of self diagnosis as a workaround. It may not be real thing but it will get you going forward. Even if you are not autistic the tips on to how to cope with autistic like traits can be useful.

It sounds very frustrating. I'm also in the U.S. and the biggest frustration I hit was my insurance company--their heart was in the right place but their head was apparently deeply up their intestinal tract. But I did this without the complications of a Pandemic and a hearing problem (though my bride would probably say I don't listen!)

Regarding self-diagnosis...I think I agree with ASPartOfMe that it might be a workaround...though I would hope it was only needed to be a temporary workaround. No official diagnosis is needed for WP! After I got my formal diagnosis I told my other healthcare providers about the diagnosis...they all took my word for it and did not ask for documentation, but they pretty much ignored the diagnosis when dealing with me. (Though I think it motivated one Cardiologist to honor my request to put things in writing!) I was retired by the time I got the diagnosis so I have no idea whether or not a workplace would require formal documentation if you requested special accommodations from them.

I hope you have found the following:
----Autism Spectrum Quotient Test (AQ)
----Aspie Quiz ^{Registering is optional!}
They could reinforce a self-diagnosis.

On the off-chance there is something you'll find interesting or useful, here are some observations from my experience getting a formal Adult Autism Assessment, in the U.S., at the age of 64. If my notes below don't interest you, of course, just ignore them!

----After I concluded I was probably a High Functioning Autistic I learned from the Internet that I would need an Adult Autism Assessment.

----My insurance provider's web pages seemed to say I could just find a provider on my own and the assessment would be covered. To be cautious I called the insurance company and on the phone they told me I needed to have my Primary Care Provider request a referral! Months later I concluded what the insurance company meant to say on the phone was: You can go directly to a network provider and it would be covered, except we have no suitable network providers anywhere near you so you'll have to go off-network, and to go off-network you need your PCP to request a referral.

----My PCP didn't hesitate or question when asked to request a referral. She did it immediately. Less than two weeks later I received a referral in the mail. This is when things started getting frustrating.

----I called the provider in the referral--and they did not do Adult Autism Assessments. I called the insurance company and they gave me some more possible providers but a quick look on the Internet persuaded me that none of them were suitable. Finally the insurance company said I could find a provider myself and they would give me a referral to them--but they did require that the provider had to be a Licensed Psychologist with ABA credentials.

----After considerable Internet research I determined that very, very few Psychologists have ABA credentials and none of them were on-network. But ABA credentials seemed to be directly related to Autism so I started calling in-network ABA providers in my area even though they were not Psychologists.

----A nice person at the second ABA provider I called spoke with me on the phone and told me that for an Adult Autism Assessment I would want a Psychologist but ABA credentials were not needed--ABA was related to treatment, not assessment!

----I used the National Register of Health Service Psychologists "Find a Psychologist" to find Psychologists in my area, used my state's web pages to confirm they were licensed, and the Psychologist's web pages to see if they (a) worked with Autism and (b) worked with patients my age. However, none of their web pages said they did Adult Autism Assessments! I believe Adult Autism Assessments must be uncommon enough that the Psychologists see no reason to mention it on their web pages! You have to contact them to find out.

----The person who answered the phone at the first practice I called did not think they did Adult Autism Assessments but would ask the Psychologists, just to be sure. Later I got a callback telling me one of the Psychologists would do my assessment! I believe Adult Autism Assessments must be uncommon enough that even the support staff at a practice might not know they would do an Assessment. The Psychologists have to be asked to find out. (And, I think Adult Autism Assessments might be uncommon enough that you need to look for a Psychologist who will do one, not necessarily one who has done one.)

----About a month later I (and my bride) had the first meeting with the Psychologist. By the end of that month I had my diagnosis.

----The Psychologist who did my assessment was not on my insurance company's network of providers and did not coordinate with any insurance company. She sent me a bill and I paid it (happily!). Eventually I got around to submitting the bill to my insurance providers and they gave me partial reimbursement.

And I can easily believe the Pandemic and your hearing impairment might make your quest for an assessment even more frustrating. Also, I had the advantage of being retired so I had a lot of time to cruise the Internet.

I don't know if anything above might be useful to you but I do wish you good hunting on this...even though it might take quite a bit of time. (Oh, though, if you've actually read this far through my lengthy post then you might have enough persistence to ultimately succeed!)

On your profile, there is a diagnosis status option. Among the choices are "Have Asperger's - Undiagnosed" or "Not sure if I have it or not." If you're worried about how you come across here without having an official diagnosis, then simply chose one of those to clarify and display it on your profile.

But, anyway, the fact that such options exist is very telling. Many of us come to the conclusion we're Autistic without an official diagnosis. In fact, I do wonder: How many of us get a diagnosis after becoming aware of Autism on our own vs. those who had no clue they were autistic until a doctor told them. It may be 50/50.

It almost seems as if you have to get lucky, have a doctor who knows what autism is, and is able to correctly spot it in you. Trying to do the opposite has proven very difficult. If a doctor is unaware of the symptoms of HFA, he won't diagnose you of his own accord, nor understand you when you bring it to his attention.

I do have to ask - you said 15 doctors ignored your requests. But what sorts of doctors are they? Are these people who actually specialize in diagnosing adult Autism?

Thank you all so, so much. I dont think anybody has ever listened to me this much.

@double retired- read the whole thing and that is super helpful to know that it's a nightmare no matter who you are. Why does one have to fight so hard for what seems like a pretty basic thing? Especially when you think the people seeking this are typically *NOT TRYING TO GENERALIZE ANYBODY* straightforward and direct- id rather deal with people like that than anybody else! (I ask entirely too many broad questions... my poor husband...)

@ezbzbfcg2- I saw the options but my guilty brain makes me freeze.. so usually I avoid things I worry may offend others even if I dont see how it could, im a horrible judge of peoples feelings. Theyre so fragile and all over the place and I dont want to harm anyone anymore than the world already has (unless you deserve it... then its open season with my crazy little self )
The doctors were all a mixed bag of anybody and everybody in my network, varying from local for in-person visits to out of town for video appointments. Some mentioned autism, but not specifically *adult* autism. In my introductory emails (I know im a dork, but it eliminates confusion before it starts) I explain exactly what I'm looking for and ask if they have experience or are willing to work with me or even have someone in their office who can help. Nobody in my network had "adult autism". Nobody but one doctor replied, then vanished.

Thank you for the quizzes and tests- the first one i had taken before but the 2nd one was new, so I copied the link it gave me after I finished.
Comments appreciated.
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Im not particularly interested in "community"-please dont take it coldly, I love interacting on small, controlled levels like this but im just not looking for a "family" vibe, I like my solitude. I fought very hard for it- but I would like to know im not alone and im not taking anything from anyone else by saying so. Thanks for your patience guys

I'll split a hair--I don't know that I had to "fight" to get my assessment. My bride was the only one who tried to dissuade me, and she didn't try very hard (she agreed I was probably a High Functioning Autistic but was concerned I might not want to officially have the label). What I did have to do was "be persistent". My impression was that I was looking for something uncommon so I needed to be persistent in looking for it. Oh, but looking for it included harvesting information from the Internet and building lists so I thought it was kind of fun, too.

Rhetorical questions regarding your e-mails to Psychologists and Psychology practices... Did you ask them if they could do an Adult Autism Assessment or suggest someone who could. And maybe tell them your COVID vaccination status. And, I guess, ask if they couldn't do an assessment now, could they do one after the Pandemic has receded a bit.

And, about your Aspie-Quiz results... I didn't even understand my Aspie-Quiz results! The only part I understood was "You are very likely on the broader autism cluster (Aspie)". But you did motivate me to find more information. What I found was: "Interpreting your Aspie Quiz scores". I suspect you will find it interesting.

What I can say about your Aspie-Quiz results:- ^{You are very likely on the Autism Spectrum.}---_Duh!


My Aspie-Quiz results were:

------Your broader Autism Cluster (Aspie) score: 137 of 200
------Your neurotypical (non-autistic) score: 62 of 200
------You are very likely on the broader autism cluster (Aspie)

I apologize for that- another quiz I took did mention I favor the agressive side of things even in my word choice (not always my intention haha), and literally every single person I've ever met agrees. I mean no harm at all- but I am *highly* volatile (I don't mean to be! ) I just aim for the heart, why not?

My goodness the understanding page helped so much and you can bet ill be seeing how well I can camoflage- I think that's what happened actually. I think after my "meltdown" (my PTSD forcing its way forward after years of supression... old diagnosis) I was 100% unable to put on what I always called my "work persona". I never thought about it- it just allowed me to make money and survive day by day year by year. Im more or less *forced* to look inward now. I was never allowed to do that in my youth (says the 29yr old...)

My husband says the SAME THING. he relented of course because he knows my curiosity will slowly push out every other facet of my life unless someone specifically tells me not to *and* gives valid, logical reason why, but thanks to yall I think I'll try one last time to the doctor who actually spoke to me.

I'll try to assume that it was some kind of accident (bull) and move forward peacefully. Ill have my husband call for me, he can hear and he's a fabulous people person.

No need to apologize! I was the one splitting hairs. (Check...did I give you split ends?)

And, yes, from some perspectives (like from my perspective!) it is funny for a 29-year old to talk about their youth. I have shoes older than you! (Well, boots, actually.)

Frankly, before today I'd never seen the "Interpreting your Aspie Quiz scores" page...and never knew how to interpret my own scores. And then when you talked about that explanation article and camouflaging I had to read a little more carefully. Before just now I've never heard of the CAT-Q test; please tell us all what you think of it!

Oh wow... apparently I mask and camoflage way more than the average female. I mean, since joining here and losing my persona (perhaps I should start calling it my Mask?) I kind of hypothesized that might be the case.
The woman that gave birth to me called me a "b*tch" for the first time when I was 4 and stayed afraid of me so I guess you start to learn quick what is and isn't ok to be. (I'm done being angry- like all bad people theyre off living comfortably and happily far from the consequences of their actions so )

I distinctly remember watching all the other girls in elementary. I didn't understand or share one thing in common but teachers wouldn't let me play with the boys, so I did what I thought all girls did- act like everyone else. It was the only thing that made sense. How do they all know the same things? How do they all know the same games?
I also learned *how* you imitate is extremely important. Exact copying gets exiled, but referencing behavior patterns lets you slide under the radar.

...as you can probably guess between my short temper and inability to lie I didn't try to use these techniques more than I had to.

Now they make sense.

Ps- jokes on you I shave my head XD hair touching me is THE WORST texture/ experience. YUCK.

Well...playing with the NT boys might not have been as much fun as you'd guess. By mutual consent I didn't do it a lot.

Shaved top of the head?! I used to shave the front...though we took advantage of the Pandemic to experiment with not shaving it. My bride likes the beard and mustache so now I'm not allowed to shave the front.

It would be polite to not ask me about the top.

Eh, its more an issue of I've never quite understood the actual *difference* between boys and girls (obvious physical differences aside) other than girls are sneaky-mean and boys are physical-mean, and physical-mean is a whole lot easier to deal with. Throw a few punches and kicks and you're good (or maybe that was just my awful schools. Either way)

In the spirit of transparency I shave my head half because it really bothers me and half because my specific OCD (trichotillomania) causes me to pull it out anyway, and no matter how hard I try with all my behavioral therapy tricks and iron will determination I won't know im doing it until someone points it out or I see the pile of hair on the floor or a stripe of colour in the vacuum (very disturbing/funny )

I dont bother with hopeless things. I will make genuine efforts from every angle and then the issue is tossed into the black hole of things I refuse to care about (not *dont* care about- *refuse*, there's a difference. My OCD demands a separation. Its great)

Since your other had things to say about your diagnosis any tips for bringing up what we've shared here with mine? I feel foolish bringing up charts and graphs (wrong word I know, hyperbole) without a *doctor* attached but I really want to share what I've discovered.
I have the willpower to wait if thats wiser