Getting an ASD diagnosis as an adult, some tips!

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ok, hope i don't get int trouble for this thread, it is not a thread for tricking a doctor into giving you a diagnosis. it is simply addressing the difficulties people have getting diagnosed due to psychs/doctors/whoever being uninformed.

ok, most people know that the majority of professionals are downright crap at diagsosing ASDs, they have a pre-formed opinion in their brains of what autism/autistics is/are. and this is where the trouble seems to start.

adults who have been without diagnosis no longer fit into this pre-formed opinion as far as the professional can see, so they say "no you can't possibly have AS cause of la la lala la rubbish." and the poor person is left thinking "yeh but but but..." but no real way too argue.

the way around this is to take the time to learn not only what makes you think you have AS NOW, and not only why you thought you had AS as a CHILD, but how they CONNECT. the doctors are too, i dunno...silly, lazy...whatever, to make these connections. so you must go in prepared to make them for them.

an example, the eye contact thing, i've seen many people around here say "the psych said i can't have it because i have good eye contact". yeh ok, that'd be fine if you were talking about a 5 year old....but a 45 year old aspie has learned to accomodate (as we all know). you may think that telling the professional that this is the case is enough, but they will likely fob it off and ignore it. you need to MAKE THE CONNECTION.

when they say "no you can't have it, your eye contact is too good", make them hear the whole process as to how it became good and any discomfort that it still causes you. i'll use my own experience of learning eye contact as an example.

i would tell a shrink who says my eye contact is very good that "yes it is very good, it had to become very good! for many years i got in trouble for being rude because i would not look people in the eyes, it just made me feel uncomfortable and unnatural. but after many years of being taunted for it i started to force myself to maintain eye contact as best i could to avoid trouble. i got pretty good at it, though now i sometimes have the opposite problem of not looking away from people, it seems like even though i can look in peoples eyes, i still can't find that natural balance. and on top of that, i still don't really like looking into peoples eyes anyway, i just learned that it's what is supposed to be done."

long winded i know, but that makes the connection for them, it shows them HOW and WHY the criteria still applies to you even though they might not see it.

of course your story might be different, the above is just my own experience of eye contact. a friend of mine who is on the spectrum and he is also considered to have great eye contact, his strategy is to look for as long as is bearable, then dart away for what he considered an acceptable amount of time (usually about 2 seconds) then he will get back to eye contact. it is still a conscious physical effort for him, but he still passes the eye contact thing with flying colors. what you see is not always what you get!

..

and this strategy can be applied to almost any symptom of AS for the simple reason that as aspies grow, they learn to cope our of necessity. they learn to stim in a less noticeable manner, excessive hand flapping may become simple foot tapping, but it is still the same symptom. the professionals need to be told how the process of the symptom-evolution occurs...not just that it occured.

so for anyone going for a adult-DX, really take the time to consider your evolution from childhood symptoms to your adult ones, and how and why they have changed, otherwise you are at risk of being told an ASD diagnosis is impossible, when it may be correct.

and that's the gist of it i suppose. i don't know if it will really help anyone or not, but i hope it can. i know it seems unfair that the patient should have to do more work than the doctor, but on the positive side, at least you will be giving someone a better understanding and a less close-minded view of adults with AS.

holy crap, thank you so much. i have been thinking for a while why i do the things i do, which helps. but also the fact that my parents used to teach me, or drill me, or keep reminding me or whatever, to smile, maintain any semblance of eye contact...to brush my hair and the like. (it helps having easy hair.)

one thing for the doc, though, they really haven't a lot of info to work with. "well, i have this this and this. also this happens." "ok...? what else?" perhaps my lack of ability to communicate gets in the way of my needs, which has definitely happened in the past. like you said, they need the how and why to draw up the conclusion. as a student of anthropology, i could look at an artifact or perhaps a bone and think of an answer to a question, but without context, I draw bad conclusion.

not long winded at all, but informative, so thanks for sharing your story.

Good post. I would like to add a bit. It's also a good idea to give symptoms and experiences that are beyond "oh this patient talking to me has a low self esteem that explains all his/her social problems". I talked about sensory issues and missed social queues first. I'm not talking about making stuff up. I'm saying to present the real experiences and difficulties you've had that caused social problems that aren't explained by self image or mood disorders first. For example I explained to the doctor how I've never recognized, at any point in my life, that someone was flirting with me. Then I gave a few examples of when I found out that someone did have to hots for me and had to verbalize their feelings because I was missing the non verbal queues.

I'm not a big fan of the psychoanalysis stuff. I spend way too much time thinking to not be aware of what my subconscious is up to. Maybe this isn't the case for most people, but I'm very aware of my own intentions and motivations, it's figuring out other people's that's tough. For something as important as finding out if my difficulties are explained away and not my faulted because of AS, I'd rather stick to factual information that I can backup. I prefer it to having someone trying to figure out a silent inner me that's pulling puppet strings. Me and inner me are tight, let's stick with the facts please doc.

Very good post, 88BK and very helpful. Thanks.

Great post, just only now...I have to prepare more harder for a dx....geez its like going for a driving test.

Informative read.

Thanks 88BK,

Richard

I think it makes a big difference who does the DX. They're likely to ignore anything outside their areas of particular interest, so I'd go for somebody whose track record shows they've spoken at AS conferences or written about the subject. Just google their names and you should find those details. If all they've been involved with is schizophrenia, they might be happily overdiagnosing people as schizophrenics and filling them up with unnecessary and dangerous drugs. AS is so subjective that it's very easy to pretend it's something else, if the motive is strong enough.

It's worth going through the diagnostic criteria beforehand, and thinking of examples which show most clearly that you meet them.

I'd also tend to ease off on any coping strategies (you might want to take a few months out to observe yourself and identify what they are, if you've spent a lot of your life unaware of AS) - a good diagnostician will make allowances for the fact that you're an adult, but you might get one who's in a hurry and not being all that careful. Don't try too hard to make perfect eye contact - you're right that it will tend to mask your condition if you do.

Great tips! I am not getting any dx anytime soon, but this has made me think....getting that dx means he/she will be observing my every word, how i say it and will be watching me constantly to observe my eye contact, body language and how i present myself. It almost seems more stresssful than a job interview!

really good post 88BK.

my theory that I have AS was initially dismissed because of eye contact. when I explained that I took the initiative to learn it as a result of a specific complaint by a specific person, I got an "oh really" and a closer look.

you also have to tell them about sensory issues, stimming, special interests that you had as a child. as the neuropsychologist explained to me, the interest might be considered a "normal" childhood interest but it's the depth and the exclusivity of the interest that matters. she said lots of little girls love horses but their interest doesn't lead them to exclude all other interests, as it did for me.

This reminds me of the first time I attempted to get treatment for Adult ADD...
I spent a lot of money to go see this Adult ADD specialist at an Adult ADD clinic...only to get this awful frosty treatment from this as*hole glassy-eyed yuppie doctor who made me fill out reams and reams of questionnaires and then treated me as though he thought I were lying...He gave me a trick question and I got the trick question wrong because I was nervous...but I knew it was a trick question...after the fact...but I couldn't go back and fix it...also I was not making much eye contact (I did long enough to notice what I perceived to be glassy eyed-irritability that made me wonder if the doctor was on meds)..and I was sitting all curled up...and I touch my face a lot....so I have have wondered in retrospect if this added to the reasons he must have thought I was lying...and he said that often they do make a diagnosis/prescription in the first visit...but in my case he wanted me to take the tests that would cost thousands of dollars...and his clinic does not accept insurance...and he gave me this big stack of questionnaires for my friends and family to fill out....
Funny..the response to my statement of having struggled with ADD symptoms for my entire life...."And what would those symptoms be?" the doctor asked....
I ended up taking my forms home and then writing an angry letter on the back of them...that I never sent....

Just like the last doctor I tried to get treatment for ADD from....His one-liner was "Well, you seem to be paying attention right now"...
He gave me a script for Wellbutrin, which makes me feel crazy and confused...

He was a lot more comfortable agreeing that I had an ASD than that I had ADD....

^^ sounds a lot like a psychiatrist I saw before I started seeing my current one.. treated me really horribly and like I was lying, and wanted my old report cards from elementary school.. because apparently a first-grade teacher with a class of 30 kids would have known more about me than the math professor who actually taught me..

He was asking weird questions like you said, like I'd be talking about symptoms (of course he wasn't listening) and then afterwards, I'd say something, and he'd ask a random "and what was that?" type question, like what you just said. I mentioned that I'd been on buspar, and he asked what that was prescribed for.. there aren't even multiple things it can be prescribed for anyway. And he kept doing that.. I'd already told him what I had issues with, and when I mentioned medications I'd tried, he'd keep asking what they were prescribed for. It didn't make any sense. And he also told me that 2+2 didn't equal 4.. I mentioned having been on adderall xr before having to switch to the immediate-release kind because keystone mercy didn't cover xr, and he asked how I took it.. I said I took 40mg in the morning (weird question, as I'd already told him how much I was on, and you always just take XR in the morning) and then he told me that that didn't exist, and asked if I'd been on 30mg. Because he apparently came from an alternate universe where 2+2=3..
I guess he thought that since he was managing his own add so well without medication, everyone else should too. He literally didn't let me talk for more than 30 seconds before interrupting me, the entire appointment.

And of course, the more flustered I got, the more I couldn't think of the right answers to his questions, or really look at him as I tried to explain something and he interrupted me to argue..