09 December, 2009

this is old news but I'm just writing it out for myself

I call myself ASD both because I have multiple diagnoses (PDD-NOS, Asperger's, and Nonverbal Learning Disorder) and because I don't believe there is a quantifiable difference between PDD-NOS, Asperger's, Autistic Disorder, and NVLD. This is not to say that there aren't vast differences between ASD individuals; there are people who are verbal and people who aren't, people who are prone to violence and people who aren't, people who are extremely upset by loud noises and people who don't care that much. I could go on forever--obsessiveness, form or presence of stimming, executive function, feelings about being touched. And passing, of course. Plenty of these differences are super important when you think about the kind of help the person might need. But calling these differences NVLD, Asperger's, PDD-NOS, and classic autism (or, more commonly, Asperger's and autism) is messy and impractical. If every ASD person is just one of those four things, then why do I have so many diagnoses, and how come people often call themselves (or are called) a different diagnosis than they actually have?

If you aren't familiar with this, it often comes in the form of verbal people with autism or PDD-NOS diagnoses being called or calling themselves "Asperger's," or nonverbal PDD-NOS people being called "autistic." Also, I have noticed that when people with Asperger's do things that seem "low-functioning," like what Francisco Hernandez did, they are more likely to be referred to as "autistic" in articles. Because Francisco doesn't talk much and his problems are more about anxiety and dissociation than they are about the stereotypical idiot-savant obnoxiousness, he is not being called Asperger's as much as he would if he'd, say, been kicked off a subway for talking nonstop about calculus. I took a class on ASDs and the TA described Asperger's as "active and odd" with classic autism as "passive and aloof." These different labels divide ASD people into verbal, obsessive, active, annoying, gifted (i.e. they don't really have it so bad?), and nonverbal, "without skills," passive, blank, violent, etc. But it should be obvious from how much everyone fudges these labels that one label is almost never enough to describe a whole person.

Like Francisco, I'm pretty passive; I struggle with executive dysfunction and shyness more than I exhibit grandly inappropriate social behavior. (Although I guess this hasn't always been the case.) But of course I'm verbal, and (I think) I pass very well. I guess passing means I'm high-functioning so I should be called Asperger's. But Asperger's makes me think of someone noisy and argumentative; actually, Asperger's makes me think of someone male, someone cold, someone confident, lots of things I'm not. So I then want to fuck around and say "developmentally delayed" or "I'm young for my age" or "I have a processing disability" or "I have a brain disorder that does such and such" (and then I just list whatever symptoms are relevant right then).

But fucking around is tiresome. But Asperger's sounds wrong. But PDD-NOS is maybe an exaggeration because I was so young. And NVLD seems like dodging the issue by using a term that isn't associated with ASD (in fact, I'm pretty sure it was invented just because people didn't want to admit their kids had ASD).

And besides, why should I have to fuck around? What would be so bad about just saying I'm an ASD person who is verbal but has some speech processing issues, a lot of executive function problems, some social anxiety, a lot of stimming, no big sensory issues anymore, and decent if atypical social skills? Isn't it stupid to even indulge the idea that some people are Lower Functioning Across the Board (with functioning meaning about eleven different things), and aren't all these labels kind of stigmatizing to Kanner/some PDD people and simultaneously implying that AS/NVLD/some PDD people aren't really disabled, and are just sort of cute and annoying, and don't need that much help? And that we shouldn't care about each other? Whatever. So anyway, I call myself ASD to avoid inaccuracy and to express my loyalty to all kinds of different humans.


  1. My official diagnosis is autistic disorder. I believe in using the blanket term to describe different people who have these similar symptoms. I actually hope they change the next DSM to reflect that.

  2. When you have to tell people about your disability for practical reasons, what do you say?

  3. I think its ridiculous that people assume those who aren't "classic autistics" don't struggle and have it better off. What people are so ignorant about is that just because you know one perseon with Autism does not mean you know everyone with it because each person is different but it seems people want to fail to acknowledge that.

    NVLD I hear may be put under hte Autism Spectrum label as well for the DSM but I may be wrong.

    I have Autistic Disorder, but I just say I have Autism or I'm on the spectrum I don't feel the need to say "I have Autistic Disorder!" kind of thing cause I don't like the way it sounds off my tongue. I've met a few people with PDD-NOS who struggle just as much, if not more than i do.. and the people I have met with AS aren't very nice, and give those who have AS a really, really bad name. They are rude and they know it (they tell me they are, and that becaues they have AS they shouldn't be punished for it, regardless if they are going around calling people stupid, tripping other people (one of them tripped someone who has Cerebral Palsy, and went on about how he should not be punished for it due to his AS and because he was so much smarter than the r word (i don't like to say it.)

  4. are you brokenfences from lj? the people in your post sounded horrible. It makes me really upset when ASD people insult/try to separate themselves from people with intellectual disabilities or severe autism. I mean, intellectual disabilities and ASD aren't the same thing but there is stuff in common. I feel like some high-functioning ASD people are just so into being smart and they think that somehow redeems them from having a disability, instead of realizing having a disability isn't bad in the first place.

    the reason I was wondering what people call themselves is just that if you're verbal, I'm surprised if people accept it when you say you have autism, I'd expect people to say, "no you don't, maybe you have Asperger's, but not autism." I assume that if I didn't have an Asperger's diagnosis I would probably claim to have Asperger's anyway just for convenience.

  5. I don't like it when people look down on those who have other disabilities , or those who are on the severe side of the spectrum. I think the whole 'intelligence' thing is really overrated, not everyone with asperger's has a high 'intelligence' i mean yes some are very smart, but i know a few who aren't all that smart.

    Some people accept it some people don't, I don't really go around stating that I have it to be honest. The only people in my opinion that need to know is the Disabilities center at my school and sometimes my teachers. However, I do not speak a lot in public unless I am around people who I find extremely comfortable to be around. I generally pick at my sleeves, stare at the ground. I also have extremely delayed reactions, and I stand out like an extremely sore thumb apparently. Idk some people believe me.. however some people especially parents of children on the spectrum ask me if I am Autistic, and those who are educated or studying psychology have asked me too. I say yes, and they decide to play a guessing game of what my diagnosis is which is kind of ridiculous in my opinion but only one person has said I could possibly have AS everyone else has just said "classic Autism," they say my mannerisms and the way I act in certain situations is a dead give away whatever that means.

  6. I've always just said "I'm autistic" or "I have autism," since my actual diagnosis, PDD-NOS, is really obscure and I don't think there are a lot of real differences between autism subtypes anyway.

    Asperger's wasn't a choice when I was diagnosed, but since I could speak --- and learned to speak precociously, even --- I was clearly not a classical autistic. So, PDD-NOS.

    People mostly react one of two ways: they're either all excited, because they've got a child/younger relative with autism and they want to quiz me about it, or they're neutrally interested, like "Oh, autism. I've heard of that ... what's it like?"

    Every once in a while I will get someone who's confused because I can speak, or whatever, but even then it's not a question of disbelief, but of "oh wow I didn't know 'autism' was such an inclusive category".

    Ironically, the one person who could tell I had autism before I told him --- a psychology TA, natch --- also told me, later on, that if he were evaluating me today he would not diagnose me with anything. Which is rather paradoxical, actually ... it was obvious to him that I had it, but he thought I was too "high-functioning," verbal, intelligent and social to be Really, Seriously, Diagnosably Autistic ...

  7. NVLD is really wrong, misleading name, which obviously should not be used to describe dowcip-emotional disorders. "Learning disorder" should only mean disorder of school abilities, not ASD without "kanneric" symptoms. If someone has lack of eye contact, limited social needs and interests, atypical, perseverated interests nad behaviors then he has "autism", not learning disorder! NVLD is really severe disorder. It is just harmful and unjust name! They should stop using "nonverbal learning disorder" name to describe social, communicational, behavioral, emotional, sensoric, motoric disorder.

  8. There is no term "pervasive developmental disorder" in DSM-V. The definition of PDD in ICD-10 is too much about "restrictiveness" and "repetitiveness". I think that many cases of NVLD have to be categrorized in the same group of disabilities as "kanneric" autism, not as a "specific developmental disorder", "specific learning disability". Some forms of NVLD may be rather developmental socio-emotional disabilities, such as classical autism, which is more severe type od "complex" developmental disorder. NVLD is a complex (not specific!) developmental disorder. It can bring social, emotional, behavioral issues, idiosyncratic thinking, sensory integration issues. NVLD is misnamed and misclasified. NVLD, such as "kanneric" autism, is a complex developmental disorder.