The Politics of Uncertain Diagnoses

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I am giving a presentation on autism to my college course tomorrow. Part of this will involve outing myself, i.e. informing everyone that I have AS; it is a necessary part of the presentation for various reasons, and so I will do it. I try extremely hard to fit in, or at least to not bother anyone. Well, I don't try that hard. I wear weird clothes and things like that due to sensory things, and I guess I talk kind of oddly. But anyway I try pretty hard.

I was diagnosed with Asperger's syndrome in October 2009, at the age of 19, by two separate psychiatrists. I am a woman. They told me my social skills were too poor and they could not help me because I was over the age limit. I have also been told that having Asperger's is impossible because I "am not annoying" and I am "compassionate."

As such I am experiencing what might be called cognitive dissonance.

If I inform them that I have Asperger's and I do not, then it will be a Lie, and that is terrible and makes me feel sick-ish.

If I do not inform them in order to escape my quandary I will not be able to make as powerful of a presentation, and I am trying to fight for autistic rights. I have also been informed that they will assume I am autistic even if I do not say I am (by my rhetoric teacher, who seems reliable).


I am going to say I have been diagnosed with it, because that is different than saying that I necessarily have it right now, and I will add that it was a couple of years ago so that they can infer a possible change through time-difference. I am still worried that I will be misinterpreted all the same and then there will be more lies and half-truths flying around.

I do not think I am saying "what should I do." Maybe I am just sharing. I wish I had some sort of problematic to line up here. Maybe it's "do I sound like a person with Asperger's," haha. But that is stupid. What can you say about me from such a great distance, and only my writing.

I am rambling now so I will just cut this off here.

[quote="Quadratura" I have also been told that having Asperger's is impossible because I "am not annoying" and I am "compassionate."

I will add these to the list of completely stupid reasons someone has been told they couldn't possibly have AS for.

Well, I will thank you then because it is pretty comforting to hear that is stupid.

Really, it is just nice to have a response from a human being, because otherwise I am a bit alone in this.

Indeed.

Thank you for being nice.

Apparently the presentation went over so well that my professor now wants to help me with an honors thesis. This seems pretty good for someone in her first rhetoric course =)

Good luck on your presentation! If you are going to out yourself, the only advice I have is totally own it. Hold your head high, be proud and, if you can handle the stress of it, answer any questions they may have.

You go girl!

Had this thread open for a while but wasn't in a state where I was capable of writing out my thoughts. There are several things I have a problem with in this message.

Maybe you could just say that you are on the autism spectrum instead? Does it have to be that specific?

Well, women manifest the traits differently. If this shrink was truly a professional, he/she would know that. The compassionate bit may have been about expressing compassion. I agree with the last posters; if the shrink truly meant it when he/she said this, then he/she was probably not really a professional.

If you've researched it well (which it seems you have) and you feel like it does apply to you, then it's not a lie. You have been diagnosed with it, after all.

If you were diagnosed with Asperger's, you have Asperger's, unless you were misdiagnosed. Perhaps, again, it's just easier to say that you're on the spectrum. The labels are complicated and this is the best way to avoid all the confusion.

I am going to be providing them with an email address (one of many I have, of course), which I will tell them they can email me at any time from now until whenever. It'd be nice for them to have friendly human resources if they end up with ASD kids.

Thank you for your encouragement =) I will do my best.


@MathGirl: I think I should make myself more clear. One of the reasons why this has been a problem is because I have a personality that, when I get stressed, becomes obsessed with Maximum Truth and Maximum Specificity (and also very anxious/paranoid/suspicious). It's sort of a personal quirk, I think. Writing out my thoughts helps sometimes to show me how I am being illogical (I often think in pictures, and writing helps turn everything into manageable, systematic pieces).

I partially specified that I was diagnosed with AS because I think that group has an odd position between NT-status and autistic-status, and some of the presentation was about widening the spectrum to include the existence of people like myself. The main panic was in wondering if I was actually widening that subgroup, or just giving an NT person unwarranted special-status in the classroom (myself, theoretically, if I were NT), thus robbing true ASD-folks from agency and a voice, and giving myself undeserved power.

The people who say I can't be an Aspie are usually folks like high school teachers from my hometown (who mostly know about AS through IEPs), or my mother, who thinks that there is nothing wrong with me and therefore I shouldn't be labeled; the psychiatrists knew very well that I was on the spectrum, just not what they could possibly do about it. All that is a different subject entirely. Anyway, I am still not used to my classmates treating me like an asset rather than a liability.

You're right that I have done rather a lot of research (lots, and lots, and lots) on this, and the traits do match. Some part of me still wants to shout "no," though. I don't want to be some part of a marginalized group whose voice I constantly see being taken away! I don't feel like becoming part of a marked group, in general, is a good thing... we don't need to be marked, we need to be treated like people first and foremost.

Anyway, all of this energy is why I gave the presentation in the first place. Luckily, and surprisingly, my class is still treating me like me, instead of acting scared or suspicious like some people did the first time I let them know. So, I guess this story has a happy ending.

Getting diagnosed by two doctors is twice as many as I have. Unless you've been "un-diagnosed" by at least as many doctors, you can tell anyone and everyone you have Aspergers with no guilt. I agree with Draelynn, go out there an "own" your diagnosis.

Suggestion: First "build a 'safest, mental auto-profile'", so to speak ...

... and then do not offer any personal (editorial) comment on that matter. If you refrain from saying "I have AS" or "I am an Aspie" (or whatever), then you will avoid placing yourself in the position of having spoken your own personal thought/belief on the matter. So then, and again:

Report the doctors' opinion -- "I have been diagnosed as having Asperger's Syndrome"-- as a simple fact ...

... and then just leave that matter at that.

And then if someone actually does doubt that diagnosis, just refer him or her back to those doctors for any discussion about that.


May I re-word that to see whether it might sound better if said in another way? Here it is:

"They told me they could not help me because my social skills were too poor and I was over the age limit."

If I am hearing you correctly, that kind of statement can be connected to the matter of "autism rights".


It is perfectly fine and safe to repeat that in your presentation, and to then let people know about this:

"If you have met one Aspie, you have (only) met one Aspie!"


Certainly, so just do not say that at all. First tell people you have been diagnosed, and then tell them about Asperger's Syndrome without talking about yourself unless you again simply say you have been diagnosed.


Yes, and that is the best part of all of this! Just tell them what the doctors have said, and then talk about your own struggles and challenges or whatever (without specifically talking about yourself) ...

... and then let people simply observe you as you speak and as they hear what you say about the topic at hand: autism rights.


I would suggest you do not do that. Instead, just tell them the things you want them to hear about your topic, and then let them ask questions (if that is any part of your presentation time).


Lies and half-truths may never cease, but you already know how to not help make them any worse: Just say you are diagnosed, and then talk about only two things:

1) autism (if that is part of your presentation);
2) autism rights.


I had my SSA appeal hearing earlier today, and the judge actually had to cut me off a couple of times ...

... but no, I am sure I had not been rambling ...

Well, I should make it clear:

The presentation has already been given.

However, thank you for the help with syntax and diction. I will reread your post again later when I have more emotional energy. It seems that I made many of those changes when I spoke during the presentation itself, though, so I will just keep them in mind more for the future.

In any case, the result was very good despite my blunders.

I had not noticed the date of your initial post ...

However, it was obvious you were already aware of how to handle "topic things", yet you were uncertain about how much of your personal opinions or feelings about your own self should be shared ...

... and the less of that we do, the better we do much more!

We never need to "disappear" in order to convey things to others well, but we do need to be transparent so they can see "through us" -- double meaning there -- the things we hope they actually can see.

I understand, because I am the exact same way. However, I have come to the conclusion that AS in itself is an extremely vague thing. It is often hard to draw the boundary between someone who has several autistic-like characteristics to someone who has clinically significant AS. I've heard that Michael Fitzgerald once had a patient who was functioning perfectly well in life, having a well-paying job, own property, family, etc. but still fit the entire criteria for AS. He did not end up diagnosing her because she did not have clinically significant impairment in life. Nevertheless, even the degree of impairment that is to be considered as being within the clinical range remains difficult to quantify as it is so relative to one's environment.

Interesting. I've never had any of my teachers disprove my diagnosis. There were these two folks I have met randomly during one of my adventures (I go out a lot, mostly to AS groups) who have at some point were skeptical about my diagnosis. One of them had only worked in respite and has only met me for two hours. The other guy had something else going on with him.

Although I have another friend who was recently diagnosed as an adult while his high school teacher/educational assistant said that he can't possibly have AS since he's not like the other kids with AS she has worked with.

That's why our job remains to be able to break through the obstacles and to get our voice out. It's difficult because sometimes, the questions that people ask are difficult to answer and the conundrums we face are difficult to solve without sufficient self-awareness and awareness of our own surroundings. I ask myself difficult questions every day and I still struggle to answer some of them.

I've outed myself to my whole high school through a school newspaper article. I thought everyone would suddenly start acting differently toward me, either asking me incessant questions, regarding me with fear, confusion, or perhaps the opposite, being overtly friendly with me. However, not much ended up happening as a result, other than people commenting on how well I write.

Anyway, I'm glad it turned out well for you! Not enough people are brave enough to do something like that...