Getting an AS Diagnosis at 20

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After having a barrage of peculiar unanswerable questions about my inexplicable life and after learning about AS and just how much thinking from that framework made everything click for me as well as, after thinking my case was unique for so long, finding a bunch of people who have led very similar lives to mine along those dimensions, I'm satisfied. However, I know that self-diagnosis is not respected by many people, both in AS and NT circles, and although I would have no problem arguing my case to everybody who challenged me on it, I think things would be far easier for me and would provide me with that extra little bit of validation and reassurance if I simply got an official diagnosis.

My question is this: Does anybody have any advice on how to go about this? Should I talk to my general practitioner and get myself referred, and if so, what type of psychologist should I see? I know that most work towards diagnosing AS is geared towards children, and my location is a relatively small and isolated place so my options are somewhat limited to begin with. Another obscuring factor could be that my abnormal IQ (~140) has allowed me to detect and consciously modify certain symptomatic behaviors (or lack thereof) consistently and constantly through sheer conscious effort, and it is only now that I am beginning to realize the amount of mental effort I have been putting into some things is not required by most people, but with the end result being that I appear "normal" in some ways, although more often than not even then the behaviors seem forced, delayed (as I consciously decide to do/not do them) and otherwise robotic.

Basically, I'm worried that I may be misdiagnosed as having something else or simply told that due to one or more things the psychologist perceives (and possibly that I know for a fact are wrong) or other outlying factors such as my IQ (which could possibly invalidate some of the evaluating tools. I have an uncanny ability to see through trick questions and the like and thus invalidate the tests; such things have happened before.) will not be given a diagnosis at all, either by saying that I have nothing or by giving a verdict of 'inconclusive'. Is there anybody more familiar (perhaps having went through this themselves) or otherwise knowledgeable about this process that can give me any advice on what to do or how to go about doing it? Should I claim to be going in for just a psychological 'checkup', or should I be upfront about telling the doctor that I think I have AS? Will that bias his evaluation one way or the other? There is an arsenal of records from my childhood that I could bring in that support my theory that the evaluator is going to want to see eventually anyway, but obviously preparing them beforehand could make him think that I was 'stacking the deck' to get the diagnosis I wanted, so to speak.

Any thoughts, or am I simply overanalyzing this way too much?

All that being said though, the diagnosis is pretty much for convenient explanation purposes and a sense of personal comfort that helps me be at peace with the bad things that have happened in my life despite of how much better off I should be. The last thing I want to do is to use it as an excuse for anything or have my personality be labeled as some stereotype or substandard to the norm, because it's not. My worst fear is that people would use it against me in order to assume that I am wrong about certain things I disagree on 'due to AS', when I would say that my different perspective is what is helping me perceive truths that they cannot.

So, my second big question is this: *Should* I even pursue a diagnosis, or should I be content with self-diagnosis or even refraining from identifying as an Aspie?

Last edited by BobTheMartian on 02 Mar 2009, 8:39 pm, edited 1 time in total.

I've posted my "diagnosis story" many times, but the gist is this: Get a board certified MD or neuropsychiatrist (preferably) who also specializes in autism. Bring your baby book, bring letters from your family attesting to the fact that you had few or no friends growing up and you showed autistic traits. That's what I finally did.

I had two diagnoses of NLD only, one of NLD with AS traits...

I didn't give up after three failed attempts to learn the truth though!

Finally, I did what I described above, exactly.. came back with

(1) a diagnosis from a board certified MD autism of moderate high functioning autism.

(2) a diagnosis from a psychologist of Asperger Syndrome (free, was done co-currently at a voc rehab center.)

(3) two years of treatment at a neuropsychiatry clinic that agreed with the AS diagnosis.

Finding a neuropsychiatrist who specializes in autism will likely require me to fly out of province to even stand a chance of meeting with; I'm not sure if it's worth the time, effort or money to be honest when I'm already pretty sure of where I stand. I'll see what I can do; perhaps I'll have to keep getting referred up or something. The baby book shouldn't be a problem; and I'll actually be able to bring in my mother herself to provide some insights into my childhood behaviors, so that could work out as well.

One thing I absolutely do *not* want, however, is any sort of 'treatment'. I'm perfectly content with who I am and have no wish to change anything other than, perhaps, some superficial quirky behaviors for vanity purposes, and even then I'd rather do it under my own power. I think that seeking treatment for something I don't even view as a disease gives off the wrong impression.

Thanks for the advice, though. I'll take that all into consideration, although I won't really know what to do or what the extent of my options are until I've had at least a preliminary meeting with whatever professional I choose to open with.

If you can't find one that specializes in autism, find one that specializes in schizophrenia, depression, anxiety disorders and personality disorders. Because getting those ruled out is almost as good as an autism diagnosis in my opinion. The whole reason I chose to get diagnosed was to make sure I wasn't schizophrenic, and it was a big sigh of relief to find out I was only PDD-NOS.

I would recommend seeing one who specializes in AS or knows a lot about it.

don;t just go to your GP and ask for a referral. do your own research and find a specialist in AS or Autism Spectrum Disorders and then go to your doctor with the name of the specialist or clinic you want to go to.

don't bother listening to anyone who is not an AS specialist.

And yes, recognize that AS is your strength, not your weakness. Just make do with what you have now:)

I went to get the diagnosis at age 18 (turning 19 at that time too). I thought that a valid reason to get it was that I needed treatment for my ASD.

Yes, I'm content with who I am, I like myself and I do not want to change, but I needed and need a lot of help with understanding other people, learning about unsaid social rules, with routines, language, with overloads and meltdowns and this weird world that's just not quite my place to be. Nothing about changing me but helping me to be me and do what I want to do by overcoming disabling aspects.

So I went to get the diagnosis. And got it by my 2nd attempt, too.

The 1st wanted to diagnose me with a PD, but that professional was very keen on diagnosing me as having BPD. Didn't even want to hear about the possibility of an ASD. Also tried to twist my answer and what I said to fit BPD and assuming that I am lying a lot and not telling the truth. Pretty crazy. I'm glad I noticed immediately that being told 'oh no, it can't be as you said it' can't be right and especially because I already had professionals backing me up in my suspicion about having an ASD.

I have no traits of BPD which other professionals attested to. But that professional was on it and dead sure after just the 2nd appointment.

You got to look out for these professionals that want to make you fit into a neat box of their liking.

Though I doubt many professionals would try to diagnose a male with borderline pd, there are probably other as invalid diagnoses for autistic symptoms in males. I hope you're right that you see through those.

Got mine around that age 18-20, been carelessly living on eversince then (Heh, i don't really care anymore). It's just kinda odd how my ailments seem to be piling up -.- Born with ADD from lack of oxygen to the brain... being semi-blind (ok, not that bad, but still) , learning near 14-16 that i'm half deaf, and most recently that i have Asperger's =.= Heh. Maybe i'm just overexagerating the whole thing but most of the days, i just try to live by and not care about whatever i have. =/ The difficulties i encounter often bring those ailments back to my mind though...

Last note about IQ, i think it's a rather poor method of measuring the intellect, IQ has been shown to fluctuate at different periods of time, just as you sometimes feel dumber or smarter, so does your IQ change. =/

Hey Bob the Martian. I do the same as you. I keep track of everything that goes on around me and keep a huge "database" in my mind that helps me to make decisions and act as normal as possible. When I was in school I found this way of living to be exhausting but I didn't know any other way to cope.
I didn't have any trouble getting diagnosed. I just wrote my memories down and shared them with a psychologist. I told him that I was absolutely sure I have AS and he agreed.

Yeah...Newfoundland is pretty "out there". I don't blame you about being hesitant.

If you need to travel out of province, then I really wouldn't bother. You don't want treatment. You don't want accomodations. You just want validation. Thing is, that's one of the bigger problems with psychologists. The validation is pretty weak, because you can often find that three different psychologists might have three radically different opinions about what you 'have'.

In the end, no one knows you better than yourself. If you can reflect upon your childhood, and say with certain honesty that you DID fit the criteria for AS, then it shouldn't matter if you have an official diagnosis or not. If someone doubts you, then they can go screw themselves.

I'm an older ( 28 ) undiagnosed aspie myself. I need to get some kind of help soon. My problems are kind of piling up on me. I have always had ADHD, and since I was 18 I have severe depression, auditory processing problems, math and language problems, and ASD. I think I may also have social anxiety. I don't really like to be around people.

Yeah, a lot of the thoughts going through my head about this were of this nature. I'm wary of psychologists, as I know a lot of psychology is based on averages and discovering general trends of patterns in behavior rather than individual cases. Same with the idea about overcoming disabling aspects. With the high level of success I have in every other area of my life, I really don't have any excuse for my sorry state of affairs. One of the reasons I even joined this board in the first place was because I was interested in making some changes in my life to better it.



That's a good outlook to have, however the one drawback is that it sort of discourages you from trying to do anything to improve your situation. I know that was the case for me. I agree about the IQ thing as well. It, like the Asperger's label itself, gives you nothing even close to the full picture. However, it is a convenient approximation that can be used as a starting point and template to move forward and work out all the unique nuances.



Yeah, that is exhausting sometimes, and I think it's the main thing that keeps me from trying harder to pursue a more active social life. I want to go out more, but when I do I simply don't enjoy myself like I should for that very reason. Usually, even though I know what I should do, I simply don't either because I don't feel like it at the time or because I spend too many mental resources figuring it out to be able to come up with anything worth doing. I was one of the kids who simply went all out with it, did what I felt like and embraced the infamy of being someone who disregarded all social boundaries and shocked everyone with his radical behavior rather than work so much harder to obtain so much less in the social arena. Now, though, the alternative of simply going through everything alone seems equally exhausting, if not more so.

That sounds promising about your diagnosis, though.



I can definitely say that with honesty, and it really is mostly about external validation for me rather than convincing myself of anything. It's simply that with the attitude most people have towards AS as simply an excuse socially inept people conjure up to make themselves feel better, you're not likely to be believed in any situation where you might be inclined to reveal that information. The option to tell these people to screw themselves is always there, but rather than write these people off so easily as I have in the past I'm trying to shift my focus to a more tolerant one. I feel that these kinds of people are the ones who require the most help and patience, so I'll take any advantage I can get in the hopes of being able to get through to them.

Another huge factor that I neglected to mention earlier is the fact that I first learned of Asperger's through my family's suspicions that my father has it. Ironic, considering that most adult diagnoses happen as a result of one's child getting diagnosed. After doing my research and particularly the stuff about it being hereditary, I'm inclined to agree with them. However, my father's symptoms are far more problematic than mine, particularly the stubbornness, as he is dead set that there is absolutely nothing abnormal about him and that the people in his life are all screwed up instead. The only way to knock some sense into him and get him to take our concerns seriously may be to get a diagnosis myself, so that's one of the major reasons I'm looking into doing this. In that way, I guess it's not ironic after all, but poetically fitting.



There's nothing wrong with trying to get some sort of treatment for things like depression, particularly if you understand exactly what is causing it and you know there isn't anything you can do about those causes at the time. I've been pretty depressed myself lately, and pretty ashamed of that fact, and often times that state of mind and the ensuing thought patterns turn into a self fulfilling prophecy because you end up lacking the motivation to do anything about it, etc.

One of my big hangups is that I hate being around people in general (I'm pretty misanthropic), but I really want to have people in my life that I *want* to be around. The problem is finding and getting to know those people because I'm so disinclined and pessimistic about the whole process. That, coupled with the Aspie traits that make it very unlikely anybody is going to take an interest or get an accurate impression of me on their own make it nigh impossible to reach that point, and the problem is that those kinds of relationships are ones that absolutely require you to establish a foundation in before they start to come out.

You might want to try doing what I sometimes do; make a list of the things that might make you happy; and then try working through plans that might allow you to have those things. The big downshot though is that if you realize that there's no possible way to obtain those things or if you try to put those plans into effect and fail, then you run the risk of making things a lot worse.

***

Well, this is all pretty good advice. Thanks, it's given me a lot to think about. Unfortunately a lot of it is contradicting other stuff. I should be able to make an informed decision now, though.

I'm the same way. I hate to be around people and I'm very misanthropic. On some level I have a small desire to make a few friends and find a significant other, but a other part of me absolutely despises every moment I have to waste with most people. Most often people like us see the absolute worst in humanity because we are easy targets for their abuse. I'm sorry but people who "love to be around others" all the time like some NTs, makes me sick.

The way I'm going with my ideas now, and it's a way that has really helped me, is to take a 'never give up' approach to these kinds of situations. While I may be emotionally disinclined to interact with certain people, I don't see it as a waste of time because perhaps their condition is a result of the fact that everybody who might have something to offer them writes them off and they've never gotten a chance to learn anything. I figure we should at least make an effort to get to know people and do everything we can possibly do (or at least learn that there is nothing we can do) before giving up. I'm not willing to give up on the 1 person out of 100 that doesn't deserve to be written off based on the convenience I would get from correctly writing off the other 99.

My misanthropy is the result of my life's experiences and introspections, and it makes me miserable, so I'm very much searching for any and all opportunities to prove myself wrong. Once we give up on trying to find exceptions to our theories, they enter into the realm of unfalsifiability and cease to mean anything.

I guess part of it is a moral principle, part of it is the idea of investing time and effort to eventually discover something good. Let's face it: We have to invest a lot more than most people into these kinds of endeavours to achieve the same result. It's not fair, but it's the way it is, and as a result there are more personal benefits to be reaped from these successes, as they in turn mean something to us that the regular schmucks around us will never understand. Feel sorry for them for this ignorance, not bitter.

People who love to be around others all the time kind of annoy me too, simply because it seems that they cheapen the whole prospect. On the other hand, though, recognize that they take much less away from any given individual social interaction than we do, so it balances. My advice is to ask yourself if simply cutting yourself off from humanity for good would truly make you any happier. If not, then you have nothing to lose by continuing to stick with it. As the old axiom goes, the night is always the darkest just before the dawn breaks.

Wow. My parents have been trying to get me diagnosed with Borderline Personality Disorder, which every professional I've seen is sure I do not have. (My mother is in severe denial about me being transgender.) The last person I saw tried to blame my parents for my social problems but she also didn't seem to have much of a clue about anything I told her. I'm worried about pursuing a diagnosis because I've read they like to talk to your family and mine wouldn't do anything to help my case; they won't give my thoughts about AS the time of day.