29 January, 2011

I basically have an abusive relationship with the DSM

where it keeps building my hopes up and then, you know, dangling me off of a skyscraper, but never mind.

[note 4/30/11: it's been pointed out on tumblr how incredibly shitty the title/subtitle of this post is. For me to use a stereotype of an abusive relationship to try to make a joke about the DSM is basically to imply that no one who is or was in a REAL abusive relationship, and would not see their life as a joke, is likely to be reading this blog. I'm really sorry.]

Thanks to Sarah posting about it, I realized that a lot of revisions on the DSM-5 website have been updated. This is the ASD page.

I have some trouble with the diagnostic criteria because it's so obsessed with social impairment, and I just really worry that there will be a lot of the same issues with adults getting diagnosed. The way I see things is that a lot of people with autism tend to have a similar kind of history of being socially isolated from childhood to young adulthood, especially at 10-15.* And this is definitely an experience that affects people in a lot of ways and is important and can probably be used pretty effectively to diagnose teenagers and kids. But in my opinion it's not a good idea to say "this is autism" unless you're writing a diagnostic criteria only intended to diagnose very young people.

It's really frustrating that the DSM has again produced a criteria for autism that actually scares me when I read it, because I have to start thinking, "okay, if I need a recent diagnosis ever...where am I going to find someone who can actually do this, who actually knows enough people with autism to have a feel for what it actually is, instead of just going down the list like, 'okay, you can do a normal back and forth conversation, you don't have autism'" (seriously, you just have to miss one social symptom and you're out).

I believe in autism. What a weird thing to say, like it's some kind of ideal--what I mean, though, is that when you look at all these people who have ASD diagnoses, there are a lot of shared experiences and perceptions and impairments. Yes, the diagnosis, and the medical conception, is fucking ridiculous, as evidenced by the fact that so many people who were diagnosed as kids wouldn't be able to be diagnosed as adults, indicating that what was written down as The Disability was just kind of a fairly superficial piece of it--so what professionals mean when they say "autism," I guess I don't think that is real. But I do believe that I am a particular kind of disabled person because I've felt and seen that.

It's just really hard, because I frequently feel like the only people I can trust are other people with autism. I guess a lot of disabled people feel this way, but it's just scary to think about how much professionals don't have our back.

Speaking of being scared, I am, a lot. In fact, I perfectly fit the DSM criteria for Generalized Anxiety Disorder, except for the fact that people with ASD can't be diagnosed with GAD. I looked up the proposed GAD revisions to see if this has been changed, but it's still the same. For a minute I thought that GAD in someone with autism could be diagnosed as Anxiety Disorder Due to a General Medical Condition, but I'm pretty sure this is only applicable to physical illnesses.

This requirement has always baffled me, since, even though a lot of people with ASD do have all the symptoms of GAD, these symptoms aren't actually part of the ASD diagnosis. So my understanding is that if someone with ASD who has all the symptoms of GAD needed accommodations or services due to their anxiety, they would not have a diagnosis that supported those accommodations or services because anxiety is not mentioned in the ASD criteria; and they also wouldn't be able to go get a diagnosis of GAD, since these symptoms are supposed to be somehow covered by ASD.** Even though they're actually not.

So it's like, apparently anxiety is recognized as related enough to ASD that it can't be considered a separate disability, but it's not related enough to actually officially include in the ASD diagnosis? Wow thanks for completely fucking us every which way! That's baller.

If someone tells me I'm misunderstanding how this works--what it means for diagnoses to exclude other diagnoses--I'd be so into that. It's the kind of thing about which I end up feeling sort of sad and sick because it can be so damaging to people in real life. But if I'm right, I'd like to tell you about some other stuff that both isn't in the diagnostic criteria for ASD and isn't allowed to be diagnosed as a separate disorder in someone who's already diagnosed with ASD.

Disorganized speech, if coupled with either catatonia or what are called "negative symptoms" (flat affect, avolition, asociality), is enough for a person to be diagnosed with schizophrenia--as long as the person doesn't use drugs, doesn't have episodes of a mood disorder at the same time, and doesn't have autism. People with autism are only allowed to be schizophrenic if they also have "prominent delusions or hallucinations."

Impairing or distressing thoughts about self-injury are enough for a person to be diagnosed with Non-Suicidal Self Injury or Non-Suicidal Self Injury NOS (the NOS is for people who have done it less than five times in the past year, but regularly think about it) but neither diagnosis can be received if "the behavior [can] be accounted for by another mental or medical disorder (i.e., psychotic disorder, pervasive developmental disorder, mental retardation, Lesch-Nyhan Syndrome)." They've already ruled out the act of self-injuring as part of stimming, so that is not what they mean by saying ASD and ID can "account for" self-injury.

You also can't be diagnosed with social phobia if your symptoms of social phobia are part of the symptoms of your ASD. And no, of course they don't explain what this means. And you can't be diagnosed with hoarding if you hoard things related to your special interest? I'm actually not going to go through the whole DSM website because it's making me depressed. Maybe I'm in a depressed mood, but I don't think I was before. I just have way too much faith in professionals I guess and it's always just like...you know. Skyscraper times.

(*I guess, in the interests of accuracy, I should say that I'm referring to people whose only developmental disability is autism and who tend to grow up with and socialize mostly with non-disabled people. I'm not sure if there's as much isolation for people with autism who also have intellectual disabilities and tend to socialize with other people who have intellectual disabilities--I have a few impressions, but they're not really enough to go on, and it's also not my experience.)

(**Of course I'm aware that some diagnosticians ignore these parts of the DSM, and will diagnose someone with GAD and autism, or whatever, if it makes sense to do so--but I'd rather not have to trust them to know to make that call.)

(Also, one good thing that I noticed is that you can have ADHD and autism now, which wasn't the case before.)


  1. yup, yup, and yup..as far as "Symptoms together limit and impair everyday functioning." Not so much anymore. It does seem to be written with an early childhood developmental bent, which I suppose works well for dxing children (how they missed it in me is a complete mystery, but ya know - I'm a girl, so I couldnt have AS, only boys have AS. heh

    Dont worry so much, even if the official critera is just as mucked as it was before, the reality is that the word is getting out, aspies are on TV now, most colleges have social help programs avalible now, and there is a wonderful support community on the internet. Gone are the days of institutions and social darkness. Now we live and work and ( some of us) breed. just like anyone else. And thankfuly because of this, the awareness and aceptance is growing. not just for AS/ASD but for quirks of all humans. I think its a good thing. forget what "the book" says. If you read enough Psycology, believe me you will discover that you are infact crazy. Everyone is. (embrace it)

  2. I've noticed that a lot of the material out there for intellectual disabilities are aimed at parents with young children, rather than adults. Actually, the autism spectrum probably has more available to adults than most, since there are at least forums that are aimed specifically at adults with ASD not at parents.

    Which I think may be being reflected in the DSM, in that they're assuming it's going to be primarily used for diagnosing young children and not adults. So they're not looking at how it might present in an adult.

  3. Wow, I had no idea there were so many things you apparently can't have if you also have ASD! That *is* really weird.

    I had thought the DSM was usually silent on where a particular disorder *comes* from, like, whether your anxiety problem comes from having an ASD, or a glandular problem causing you to produce an excess of cortisol, or whatever --- the only relevant point for them, I thought, was that you HAD an anxiety problem and you wanted help with it!

  4. hrm. but then think about all the people they're excluding from diagnoses. do they suddenly not experience difficulty that they should be receiving help with because the criteria for "receiving help" was changed?
    i totally agree with eternalstranger. i'm an adult (and female(ish)), and i feel like there's very little chance of me being diagnosed with AS, even though i'm screamingly obviously an aspie. but this i think is only obvious to aspies. the professionals corralling us appear to never have heard of aspergers