30 November, 2011

can diagnosis make you feel good?

I have a dear friend who really wants to be diagnosed with ASD. I find this ridiculous. I feel kind of bad about it because I turn into the least supportive friend in the universe whenever the subject gets brought up.

My friend: I think it would be really helpful because then if it makes me feel like crying when someone talks loud, I wouldn't have to feel bad about that.

Me: (badly suppressed laugh)

My friend has a bunch of more specific and less stigmatized--therefore, way more useful--disability diagnoses. I'm like, what's wrong with those? The LD/MH ones more or less add up to ASD, except for the loudness thing, but get an SPD diagnosis if it's that important to you. (My friend isn't trying to access any services that are specifically for people with ASD.)

My friend: Well, I just think it would make more sense instead of me having all these different things.

Me: Well then you already know it makes sense.

My friend: I would feel better if I was officially diagnosed.

Me: Well, okay, but it's not going to feel that official because you're going to have to go to like ten doctors because you look too normal and have too many friends.

Blah blah blah. Am I a bitch? I guess I just think it's up to my friend whether he wants to feel like an asshole for being upset by loud noises, and not only is the purpose of a diagnosis not to make you not feel like an asshole, but in my experience it's pretty much the opposite.

A bunch of people on tumblr were talking about how professionals tend to "treat" people with ADHD basically by telling them to do things that are really hard for someone with ADHD to do. As far as I can tell the same goes for autism. Plenty of non-disabled people in my life, who understand that I have autism as a fact, can think of nothing more offensive than taking my word for it when I say, "this is REALLY hard for me" or "this is making me REALLY upset" or "could you do me a favor by doing this, which would help me do something the way I need to do it, because I can't do it the other way?"

Stock answers:

"Wait, why would that be hard?"

(thinks I am joking about being upset)

"I can't believe you would ask me to do that!"

"Well, why don't you just do this? Why not?"

Seriously guys. Autism, or whatever, is not a word that helps. Having a real disability does not in any way give you the right to feel like anything other than a bad person when you can't do something. It definitely doesn't give you the right to draw your own conclusions about what you need or what is the right way to react to a problem.

I admit that I am kind of a shit friend when it comes to this, because I hate everyone and I feel like the only thing you can do is feel okay yourself, because most people don't want you to feel okay.


  1. I was in exactly your friend's situation a few years ago and wrote a post on it: http://whoselaw.wordpress.com/2011/11/15/why-i-say-i-have-aspergers/

    Also, this article, despite some problematic language about the "high-functioning"/"low-functioning" divide, is also pretty good at explaining why it can be good for people with 'invisible' autism to have the autism part of their disabilities understood: http://www.asknz.net/uploads/2/9/3/7/2937986/invisible_at_the_end_of_the_spectrum.pdf.

    Overall, you're right in the sense that, when asking for accommodations, ASD diagnosis doesn't help much if you already have other diagnoses that are less stigmatized. I do not use my ASD diagnosis when asking for accommodations. Even for sensory issues, I will just say something about how there's a "sensory integration component" to my ADHD.

    I also should say that, for about two years after my official diagnosis with Asperger's, I was really upset about it. This is despite the fact that I only got that diagnosis after I sort of told the relevant professional that I sort of suspected Asperger's and explained why. I think on some level I did not want her to agree, because I did not want to feel like I had a social disability. For a while after the diagnosis, I felt downright panicked whenever I made any social misstep, or even just remembered one that I'd made in the past, because I would think "this happened because of a disability that will never go away. I'm hopeless."

    But the thing is, with some support, I got over that. And now I really like the fact that I have a diagnosis, for the reasons that I list in the post I linked above. I understand that for some people, self-diagnosis is enough to feel that sort of simplicity and security, but I am glad that I'm actually diagnosed. One of the complexes that you can get from ASD that's undiagnosed until adulthood is feeling like a fake in almost every situation, and I think this helps me not feel like a "fake Aspie."

    It's possible that if your friend chooses the right person to go to, he will get a diagnosis despite looking normal and having friends. I look relatively normal and have friends. My diagnosis came from a neuropsych who did some cognitive tests (she did a comprehensive assessment for ADHD and LD, which was the main reason I was there in the first place), which I think helped her see my compensation strategies more clearly. It also probably helps to see someone who has experience with a range of Autistic adults and understands the diversity in the population.

    -Twitchy Woman

  2. Interesting. Self-diagnosing actually already made me feel about 10x better about things and more emotionally stable. The only bad thing about self-diagnosis is that "unofficial" feeling, and since I'm a skeptic, my own personal feelings are not generally something I consider to be enough to figure out reality. As long as I'm "unofficial," I'll have this worry in the back of my mind that maybe it's all bullshit and that I'm that mythical internet loser who's really just a loser but diagnoses herself with Asperger's just to get away with being an asshole. Even though that's totally not the reason I did it.

    Though curiously, if I were going to go for a diagnosis, I'd for an NLD diagnosis because I think that's diagnosed in a more objective way than ASD, and because I'm an adult and not a child, and the most professionals are way more experienced with how ASD appears in little boys, not grown women who are probably "high functioning." I'm on board with considering NLD the same thing as verbal ASD, and mostly the diagnosis would be for my own peace of mind, to shut up that little doubting voice. I'm not sure how many people I'd actually tell. Probably only other ASD people, who'd be more likely to understand these issues.

  3. One reason I want to have a official diagnosis is the negative perception people have of those who are self-diagnosed as faking it and/or using it as an excuse to do or say things that come across as offensive. Also, the people around me don't believe me when I tell them I have executive functioning or sensory processing difficulties.

  4. I think you should stop yourself from being too dismissive of people like your friend, since you're coming from a perspective where some things may not be obvious to you.

    Twitchy Woman's answer as a very good one.

    One thing you should be aware of is the self doubt people can have and the enormous level of hostility towards autistic people without a diagnosis. At first I was very scared to even think that I was autistic and I was very careful to say things like "I just suspect this, I'm trying to get evaluated," etc. This wasn't just how I presented myself to others, it was how I let myself think about it when I was on my own. I also still got accused of "diagnosis shopping" and things like that, even though I've only had one official psychological evaluation with documentation in my life. I would never, never represent myself as autistic publicly if I did not have a diagnosis (even though I try to encourage other people to not see a diagnosis as confirmation or the way to "knowing for sure"). This kind of thing eventually has a big impact on how you view yourself internally too.

    Another thing is that having one word that people have heard of can actually be very important. People don't have to understand everything. If I manage to write "autistic" down a piece of paper, the police officer who's giving me a hard time is likely to leave me alone even if I'm not at a point where I can communicate much more than that. People like having labels and it can have an enormous impact on one's safety. This was my biggest reason for trying to get diagnosed, with the desire for services/accommodations being a second*. Writing down the other sorts of things autistic people get diagnosed with might not have that effect.

    This doesn't really just apply to police though, there are smaller situations where it's still helpful.

    *You also sometimes ask for "unofficial accomodations" that are related to you being autistic, but that wouldn't exactly fit with a learning disability etc diagnosis. You could do this without a diagnosis, but many people wouldn't take you seriously. Also, if you don't mention whether or not you're diagnosed, people will assume that you are and get mad at you if it turns out that you're not.

  5. A lot of really good points raised in the comments here.

    While I get your points that an ASD diagnosis is not some magical thing that will a) make other people treat you better and understand your needs or b) make you feel better about yourself, I do disagree that it's never useful to be able to say that you've been officially diagnosed. I know it's helped me in several situations. While unfortunately people still hold ableist attitudes and all of that, they still will attempt to see my behavior differently when they know I'm autistic. Of course, that can lead to other kinds of ableism, but it's still been a benefit to me in certain circumstances.

    Also, I think you might be underestimating the stigma that other disability labels have. I don't know what your friend's diagnoses are, obviously, but I do know from experience that a lot of "mental illness" diagnoses are also incredibly stigmatized, albeit in somewhat different ways from ASCs. As for learning disabilities, most people don't even know what a lot of them are. I suspect that the kinds of learning disabilities that we tend to get diagnosed with--such as CAPD or NVLD, for instance--are so little known to the general population that they're of little use in getting accommodations outside of a school setting. I don't have any personal experience with that, though, so perhaps someone else can better describe what the situation is there.

    Most people have heard of autism, in contrast, though of course that's not the same thing as truly knowing what it is. (Which leads to the "you can't be autistic" chorus.) But perhaps your friend would rather be able to say that he has something that is taken seriously as a disability--albeit something that's majorly misunderstood.

    So, that's the external/social end of it. In terms of personal identity...wow, that's really complicated. While logically a diagnosis shouldn't make much of a difference in one's self-acceptance, practically it does. I feel miserable whenever I get into a mood of "maybe I'm not autistic but just some misbehaved freak." Being part of the category is reassuring to me, despite the fact that I know logically it shouldn't make a difference, really. And I think part of this is that we tend to really like firm categories and classifications. But it's not just us, either. Categories are comforting.

  6. Actually, yes, it helped when I got an official asd diagnosis. It helped a lot.

    And the doctor didn't discount what I thought because I looked too "normal" or had too many friends. (I managed to get one who knew enough to know that having an asd and having good friends aren't necessarily mutually exclusive. Obviously he didn't think I looked too normal, though.)

    I stopped feeling like I was living an emotional double life. I stopped making excuses instead of telling the truth about things that I can't do or have problems with. I quit lying to the people dearest to me about who I was. I felt closer to being a whole person. I forgave myself for a lot of shit from my childhood that wasn't actually my fault. I connected with other people, and especially women, who really, really understand. I know who to e-mail to cry or rant to when I need it who will actually understand.

    I let myself be capable of joy again.

    I discovered that I may actually be a happy person at my core.

    I'm nicer and more comfortable with other people because I'm at peace with myself.

    I stopped having a whole category of nightmares and had a few months of the best sleep I've ever had in my life.

    I feel like I have true maps for the first time, and after 28 years of only having false ones? I can't tell you what kind of peace of mind that is. Even when the truth they tell isn't a pretty or pleasant one, I know that it's true.

    I mourned, and let go of, the version of me who was sure that she was the only one like her in the world.

    I went to the dentist for the first time in 9 years and because of my diagnosis, was able to make them understand how exactly extreme sensitivity and anxiety will affect my treatment and need for pain relief.

    So yes, for me, autism is a word that helps.

    So if your friend has good informational reasons to think that an asd diagnosis explains his or her issues better or more completely than whatever labels they have now, if it would give them the truth, then I think they should go for it. I recommend it a hundred times over. The psychiatrist I saw asked me why I wanted this. I said "because it's time that I know for sure, for my own peace of mind." He said "I guess that's as good a reason as any."

    Your friend's reasons might be silly, and the effects might not be what they think they will, but the truth is the truth, and if you need it, you need it.