'He/She Can't Help It'

In large part, the groups I act most autistic in (not meaning 'upset autistic' which some people seem to think is the when someone is most noticeably autistic - sometimes to the point of equating autism with being upset - but monologuing, tangential, stimming, etc) are the groups I feel most comfortable in. I act this way more with my family than with anyone else, and in my family I show the whole picture instead of parts of it (acting both disabled and intelligent), but in some groups of non-family I act more autistic than in other groups.
The big reason is the stigma that acting strangely has. Those developmentally disabled people who get 'therapies' are very often trained out of behavior that, like my own odd behavior, is harmless (or at least less harmful than a lot of normal behavior that isn't treated by any 'behavior programs'). Flapping your hands (provided you have enough room) isn't going to hurt anyone. Odd social behavior like launching into monologues can easily be dealt with by just negotiating with the other person (like when my father says he needs to concentrate on driving so I should stop talking) just like a lot of typical behavior is negotiated. But I've met a boy whose teacher was constantly interrupting him when he flapped his hands, and heard of people being alotted only 5 minutes per day to talk about their interests - if they're well-behaved. Can you imagine someone telling you to stop every time you fiddled with your hair (or some similar mannerism) or saying you can only talk about things you're interested in during a set 5 minutes every day?
If you are disabled, you are expected to try as hard as you can to conform. If you're mildly disabled, you probably can conform reasonably well in many settings, and even though your disability doesn't disappear, the other people can pretend it has. If you're severely disabled, you can't conform no matter how hard you try, or you may not even realize you're expected to conform.
Most people know that some people can't conform, even if they try their hardest. They're still supposed to try as hard as they can, but society makes some allowances for them because 'they can't help it'. I think this is a big part of why so many people think it so important to define abnormal behaviour as 'voluntary' or 'involuntary' instead of recognizing that it's really a spectrum, and part of why there's a big division between 'high functioning' and 'low functioning' and between 'bad' and 'disabled' (when the behavior is the same - eg not responding when someone says something to you, or interpreting a command literally when that's not the intended meaning). If you can conform, you should - even when there's no good reason for that particular rule.
Some people who try to train disabled people to conform would protest that 'if they act this way, they'll get teased' (or not be taken seriously, etc). And that is a big part of how society enforces conformity - by rejection and punishment of those who don't conform. But society has two distinct methods of enforcing conformity, and the 'helpers' who try to get us to stop acting weird are using the second method. It is indeed gentler, but that doesn't mean it's OK. The focus is not on those who punish not conforming, but on those who aren't conforming. An analogy that might help illustrate is if you told a gay person 'don't let people know you are gay because some people beat up gays'. That's better than beating them up yourself, but most people these days don't think staying in the closet (conforming) is a good way to solve the problem of homophobic violence.
I've mostly learnt to conform the harder way. I was bullied a lot at school for having unusual interests, running circles around people, getting upset and crying, acting immature, and anything I did that most kids didn't do (or that I did differently, such as being clumsy and awkward in physical activities). My teachers bullied me as well - telling me that I was doing math wrong when I followed different steps or didn't 'show my work', trying to make me stop being interested in the topics I was interested in, etc - but even if they hadn't, the fact that they focused on me instead of the bullies in their attempts to stop the bullying sent the same general message. In public, if I flap my hands or squeal, people stare at me and sometimes act scared of me.
I can control these odd behaviors for the most part, and more importantly to our society, I look like I can control them. I look normal - not just my physical appearance, but also that my speech and general bearing look (even if I weren't trying to conform) close enough to normal that most people don't realize I'm disabled. Even people who know me for awhile - though they know I'm eccentric - often wouldn't realize I was disabled unless I told them. Actually, by and large, the few people who realized I was disabled without being told (or looking for it, like a psychologist) have been bus drivers, because of my difficulty navigating by bus. Note: even if you are visibly disabled, you can look like you're able to conform in certain ways - eg if you are a well-spoken person in a wheelchair, people are likely to assume you can't control motor problems, but most of them will expect you to refrain from covering your ears and screaming when you hear an alarm go off.

Tropic Thunder

After much searching, I finally found a trailer of Tropic Thunder that actually used the word 'retard' that so many people complained about. After watching that trailer, I'm incredulous. No, not because it's offensive. But because it isn't.
Mark Twain's book Huckleberry Finn was banned from some schools because it uses (very frequently) the word 'nigger'. Never mind that Nigger Jim, one of the main characters, is probably the most moral person in the entire story, and that young Huck Finn learns a valuable lesson about slavery, morality, and his friend Jim. The message didn't matter to those schools, just what words were used.
Here is a transcript of the Tropic Thunder trailer 'OK to be Stupid':

"There were times, when I was doing Jack, that I actually felt retarded, like really retarded. In a weird way I had this sort of just free myself up to believe that it was OK to be stupid, or dumb."
"To be a moron."
"Yeah."
"To be moronical."
"Exactly."
"An imbecile."
"Yeah. When I was playing the character."
"When you was the character."
"Yeah, I mean, as Jack, definitely."
...
"Everybody knows you never go full retard."
"What do you mean?"
"Check it out: Dustin Hoffman, Rain Man, look retarded, act retarded, not retarded. Count toothpicks, cheat at cards. Autistic, sure, not retarded. You know, Tom Hanks, Forest Gump, slow, yes, retarded, maybe, braces on his legs, but he charms the pants off Nixon, win a pinball competition - that ain't retarded. You went full retard, man. Never go full retard."

Excuse me? Have these people protesting this movie paid no attention to the actual content of this trailer? First, the actor is talking about feeling like it's OK to be stupid - being able to stop worrying about coming off as smart. Secondly, his friend is pointing out a stereotype in Hollywood, one that really needs to be looked at - a variant of the 'autistic superpowers' problem Lisa described, or the 'making up for difference' I discussed on this blog. Both of these are very good things to say.
I don't think you should pick at words like this. It's the message that really counts. I don't think people should say 'that's so retarded' to insult other people, not because they said 'retarded', but because they're saying it's a bad thing to be. If they said 'you're acting cognitively disabled' instead, that wouldn't be any better. And I don't think Tropic Thunder's use of the word 'retard' is a problem, because their message is not offensive. We have plenty of real problems to deal with - this is not one of them.

Some videos I found

I was e-mailed a link to a news article about the movie Including Samuel. After watching that, I decided to look at what they had about autism. Here's some of what I found.

http://abcnews.go.com/video/playerIndex?id=4875053
An Olympic weightlifter who has an autistic son. Favorite quote:

"I remember going into my Bishop and saying 'this is not what I signed up for.' And I was in tears, I was obviously struggling, and he looked at me with a smile, and his infinite wisdom, and said: 'Melanie, this is exactly what you signed up for.' ... I stopped worrying about all the things he wasn't going to do and all the things that he wouldn't become, and I started enjoying who he was. I'm grateful that I finally figured out how to truly enjoy the journey."

http://abcnews.go.com/video/playerIndex?id=5055588
A bunch of siblings of autistic kids. One boy started pretending to be autistic at 4 so he could get more attention - he refused to speak to speak for 2 weeks. Favorite quotes:

"I would just wish that he was happy. I wouldn't necessarily change the disability part, I just - I just wish he would, um, he wouldn't, like, be sad."

"It's harder to understand. It's harder to put yourself in their shoes, so, it - you really don't know. (I have the feeling that you try to put yourself in his shoes.) Oh, yeah, and I do, very often."

http://abcnews.go.com/video/playerIndex?id=5055644
About bullying of autistics. They quote one statistic - 90% of Asperger Syndrome kids are bullied. They also have a cute picture of an autistic kid dressed up as a streetlight. Here's one quote:

"There were a few kids that didn't like me. (And they were calling you names?) Yeah. (Were they t - were they hurting you, physically?) No, they just did the regular stuff. (Like?) Gestures, or calling me names. (What did you do - did you say anything?) No. I didn't. (Just took it quietly?) Yep. (Just hurt inside?) Yep. I mean, after that, my life would never be the same."

http://abcnews.go.com/video/playerIndex?id=4491231
About the movie Autism: The Musical. Favorite quote:

"(What do you think the kids get out of being involved in this kind of production? What do you think they learned?) I think that they learned self-confidence. I mean, how many places do these kids go, where somebody's not trying to make them be different than who they are? Um, this is was place where they were accepted for exactly who they were, and I think it really boosted their self-confidence."

http://abcnews.go.com/video/playerIndex?id=5036816
About the Autistic Self-Advocacy Network and the neurodiversity movement. Favorite quote (in response to an 'expert' saying we need a cure so LFAs can function as well as HFAs):

"(And so we asked Kristina Chew, the mother of Charlie, whose autism is severe.) (If you could take the autism away from Charlie, would you?) I wouldn't choose that, no. We really try to understand him on his own terms. Acceptance, to me, is the beginning of hope."

PS: Kristina Chew has a blog, Autism Vox.

Intellectual or Developmentally Disabled?

A lot of people think that for any one group, there is a single stereotype for them. This is why those stereotyped as 'able disabled' are so often described as 'breaking stereotypes'. They think there is only one 'disability stereotype', at least for any particular disability.
Anyway, one pattern I see often, which is really ironic, is the contrast between the 'intellectual' stereotype and the 'developmentally disabled' stereotype. These are viewed as opposites, complete opposites. This can get really confusing when discussing autistic people, for whom the reality is a mix of those two stereotypes with other traits thrown in.
One scenario is an 'intellectual' parent, who identifies as such, and hopes to have a child like them. They've accepted all the values that serve that stereotype, such as valuing education, dedication, knowing a lot, acting the expert, etc. And then they have a child, who is actually a lot like them, but with many of their traits intensified, and this child gets diagnosed with autism, and considered mid to low functioning. So, like most kids described that way, the focus is all on this child's weaknesses, and they're certainly not considered anything like an intellectual. Their stereotyped as a 'developmentally disabled' person, which is the exact opposite.
So their parent thinks this child is so different from them. They can't understand the child. The child blatantly doesn't show appreciation of all the 'intellectual' values, by acting so disabled and unaware of things. (In reality, they may be very aware and value many of the same things, but this is not seen.) So this parent, who has a view of themselves that focuses very strongly on certain traits and denies other traits, and an opposite view of their child, has a major barrier in accepting and relating to their child, even though they're actually very similar people. In order to value their child while fitting stereotypes, this parent would have to value completely opposite traits to what they've learnt to value in themselves.
Another pattern is a parent of an autistic child stereotyped as 'developmentally disabled', who runs into a person identified as autistic who shows prominent 'intellectual' traits. This may be a higher functioning autistic child, or an autistic self-advocate (especially if they are, in reality, relatively higher functioning). It's especially pronounced if they're a self-advocate or otherwise breaking the 'client' role (eg a helper). The parent immediately thinks 'you're nothing like my child'. Even though, in reality, they may be a lot like that person's child, either having grown and developed since that age, or differing mostly in superficial ways (eg, being better at putting on an NT mask or having better verbal skills).
And then there's the high functioning autistic person, who has been labeled with a developmental disability, but in most people's minds, they're blatantly 'intellectual', which is of course the opposite. So either their disability gets denied completely ('excuse to be a jerk', for example) or they get told that it can only affect them in certain very circumscribed ways, as if they're only autistic when at a party, or when someone flirts with them. And they get denied needed services because they don't fit the model of someone needing those kind of services. And they get overt and covert pressure to play along, to deny their disability and think of themselves as 'not really disabled'.
I'm pretty clearly in this category. As I was growing up, my differences were called giftedness or PTSD. When I first started thinking I was autistic, piles of people said I wasn't. 'There's nothing wrong with you', my father's cousin-in-law said. My mother said much the same thing. And I went on with all the coping skills I'd learnt to deny or disguise my differences, so that I really did act only slightly autistic. But despite them, I resonated so much with descriptions of autism that my self-perception steadily became more autistic.
First I thought I had a lot of 'pseudo-autistic' traits that were really trauma. But, around the same time I started realizing giftedness included a whole lot more than knowing lots of facts, I realized I had a lot of inborn autistic traits, and started calling myself BAP or a 'cousin' (as a gifted person). Then I noticed that BAP people generally were a whole lot better able to fit into society than I did, and that gifted people who felt as different as I did had IQs much higher than me, and most gifted people in the 130-150 range fit in better than I did. And I considered myself 'maybe autistic'. Then I was officially diagnosed PDD NOS, and I knew I was autistic.
But it didn't stop there. At first, I considered myself much higher functioning. But gradually I started realizing that difficulties others had were things I'd been denying and trying to hide, and that things I thought I was high functioning enough to do took much more work than I actually thought, and how blurry those lines really are. And more and more I switched from the 'Geek Syndrome' view (a modified form of the intellectual stereotype) to viewing myself as being a developmentally disabled person as well as an intellectual. At first my identification with developmental disabilities has been in acting lower functioning than I am.
First, I'd play pretend where I was a low functioning autistic person (my mom was uncomfortable about this, thinking I was making fun of them, but I wasn't). When working with developmentally disabled kids, I'd be so focused on them that I forgot myself. It was like reading a book, and the kid was the star character. Then I joined a youth group for developmentally disabled teens, and started acting more obviously autistic when with them, but at first I felt embarrassed to discuss my interests, feeling a bit like a 'fake' because I was so smart in those ways. So I'd stim in front of them and admit when I couldn't do something, but whenever I caught myself chattering about my interests I'd stop.
I'm still switching between 'intellectual' and 'developmentally disabled'. When I'm recognized as disabled in public (not in the form of self-identifying as autistic while being overtly high functioning, but someone actually noticing me having trouble and realizing I'm disabled without me telling them) I don't show them how smart I am. When I've chattered about my interests to a stranger and impressed them with my intelligence, I don't stim in front of them. It's something I've been working on, but only in a few settings can I show both sides of who I am. I'd like to get to the point where those aren't 'different sides' but all together, but I'm not there yet.

Get Nate Home

I found out awhile ago about a boy, Nate Tseglin. What I heard first was that he was a self-injuring autistic boy with a tendency to severe reactions to neuroleptics who was forcibly removed from his parents because they refused to medicate him to treat his self-injury. I assumed originally that he was severely autistic, even though I should know better than to think self-injury only occurs in low functioning autistic kids. In fact, Nate has been diagnosed with Asperger Syndrome.
This threatens me, too. I'm high functioning autistic and I also self-injure, though apparently not as badly as Nate. I also have serious meltdowns which have almost resulted in me being hospitalized a few times.
I know this will sound bad, but I didn't think that much about Nate until I found out he was high functioning. I thought it was a bad thing, but I was safe. But if the wrong thing happens, something similar could happen to me.

Radical Feminist Therapy

I've read a lot about various therapies. My biggest problem with many of them is that they take society for granted. They assume that what the majority likes is probably good, and what the majority dislikes is probably bad.
Which is why I was excited when, in a local used book place, I saw a book on Radical Feminist Therapy (by Bonnie Burstow). I thought 'they won't take society for granted'. I was right.
Although I don't agree with everything in that book - for example, the claim that the majority of women are naturally lesbian and are socialized into heterosexuality, or that autonomy should take precedence over preventing suicide - there's a lot I found very valuable.
Firstly, she discusses what she calls the 'just-like-us' scripts. She describes three types. The first, the 'liberal just-like-us' script, is described as such:

"The paradigmal liberal-scripted woman sees all ideology as dangerous and believes that she has no ideology. While acknowledging that injustice exists and occasionally fighting against it, she believes that society is essentially just and that for the most part we need only point out injustices and appeal to people's better nature and everything will be okay. Insofar as she acknowledges and protests against severe injustice, it is generally in some other part of the world and in reference to an oppressed group to which she does not belong. She believes that all positions are equally flawed, that there is equal right and wrong in just about everything anyone says, and that everyone has an equal burden to bear."

The part about how liberal-scripted view injustice is a good example of what I call 'taking society for granted'.
Regarding everyone having equal right and wrong, I think everyone is right about some things and wrong about others, but not to equal degrees. Some people see the truth better than others, often because the others are taking society for granted and won't or can't challenge basic assumptions.

"A second type of just-like-us script I call 'honorary just-like-us scripts.' The woman with this script has been assigned and has accepted attributes that are traditionally identified with the oppressor. She has been treated like an 'exception' by one or more significant others who belong to the oppressor group. And she has been rewarded for joining with them in belittling the oppressed group to which she actually belongs... The honorary guy is in an enormously precarious and frustrating position. Being even more critically divided from women than the traditional woman is, she has no women friends on whom to rely. She keeps finding herself fundamentally betrayed. 'Inexplicably' she is periodically robbed of her 'male' status and is demoted to 'women' again... As counselors we need to understand and validate this woman's pain and her anger. She has been harmed dreadfully. Her very ability to question traditional women's roles is being used to deceive her."

Though the comparison doesn't fit exactly, this reminds me a bit of the 'shiny autistics'. Many 'shiny autistics' are among the relative minority of autistics who have the most mainstream views of autism. For example, in Autism and the Myth of the Person Alone, the autistic in that book who had the worst view of autism was one of the only two who are relatively well-known by 'curebies' - Sue Rubin. Most of the autistics in that book were much more positive about their autism. All agreed that inability to communicate is a big problem, but many described wanting to be accepted as they are instead of hoping for a cure, and many mentioned positive aspects of autism.
Regarding the 'ability to question traditional women's roles', the 'shiny autistics' are often held up as breaking stereotypes because they are viewed as 'able disabled' instead of 'unable disabled' (or, as Cal Montgomery put it, as Mary instead of Bruce).
One important difference is that 'shiny autistic' is a less voluntary position. Many autistics may be forced into that role, and rather than not expressing controversial views, they are just selectively ignored or misinterpreted when they do. As I get to know more of Tito Rajarshi Mukhopadyay's (the other relatively well-known contributor to Autism and the Myth of the Person Alone) writing, I see that his view on autism is much more accepting than the way he is typically portrayed. Partly because of his unusual way of expressing himself (like many nonverbal autistic typists, his language differences are evident in his typing, and there is also a cultural barrier for Westerners because he is Indian) and partly, I suspect, for political gain, many of those who discuss him and review his books portray autism as much worse than he does while appearing to agree with him. To a lesser extent, Amanda Baggs has also experienced this, though she fights it well. If you look at how CNN portrays her, it is more mainstream than how she describes herself. (For example, Amanda Baggs never refers to herself as being trapped inside herself, which is a comment the reporter gives when she hits herself - 'such a bright woman, so trapped'.)

"The attributes that the 'liberal' members of the dominant group impose on people with keep-it-hidden scripts are fairness, discretion and the attributes of the dominant liberal group. Injunctions and other messages that are given include the following:

• Act like us 'in public.'
• You are totally okay only as long as you act like us 'in public.'
• All members of your group are totally okay only as long as they act like us 'in public.'
• Not acting like us 'in public' is unfortunate, indiscreet, and blameworthy.
• We are bing nice by accepting you the way we do.
• If we did not accept you or you did not appreciate us for accepting you, you would not be totally okay, so do appreciate us for being nice and compliment us when you can.
• Although you can see or imply that your group is being oppressed by other members of the dominant group, do not see or imply that you are being oppressed by us liberals."

Examples she gives are 'apples' (Native people who act white) and lesbians who downplay their sexuality when around straight people (eg by not being affectionate to their partner in public). I think this pattern is extremely common among disabled people. One woman with a spinal abnormality describes doing this until she became pregnant. I have experienced the pressure not to act autistic, particularly with those who don't know I'm autistic but even with those who do. The only people I stim in front of without it being an effort and scary are my parents and some developmentally disabled people.

This post is getting pretty long, so I think I'll stop and comment on other parts of the book at another time.

Asperger Syndrome, Nerds and the Why Label? Debate

Here is something I e-mailed the author of a book I read recently called Nerds:

"I liked much of what you said in your book, but one thing I didn't like is your description of Asperger Syndrome.
Firstly, why the focus on 'functional impairment'? That is not an inherent characteristic of anyone. By that definition, an AS-acting person who had no friends and was bullied severely in elementary school but is now a well-accepted engineering student has ceased to have Asperger Syndrome, despite the fact that the exact same traits their classmates hated are all still present. They haven't changed - their situation has.
I am certainly against viewing the characteristics of 'mild autism' or Asperger Syndrome as pathological, but I don't think the best way to do that is to just think of them as nerds instead of autistic. Sure, that might bring people like me more acceptance, but what about the wonderful people I know who are much closer to the stereotype of 'retard' than 'nerd'? What about people like Amanda Baggs ( ballastexistenz.autistics.org ) a wonderful autistic woman who types to communicate and has frequently been referred to as retarded? I'm not willing to leave them behind in my quest for acceptance.
And besides, being called a nerd never gave me the key to understanding myself. Being called autistic has. Though scientists don't really understand autism very well, there's more actual attempt to understand them than nerds. Nerds are known to have trouble interacting with others, but the question 'why?' isn't really asked. According to science, autistic people can't read the nonverbal signals (according to autistics, because we have different ones). If I'm a nerd, there's no help for me. I have to navigate it all on my own. If I'm autistic, I can find out why I have trouble with certain things and what might be able to help me. Of course, I'd much rather pick the third option - understanding the unique needs of the unique and wonderful group of people I happen to belong to and meeting our needs without stigmatizing us - I'm fighting for that very thing.
I hope you can agree with that goal. And I don't want it just for people like me, but for those who fit so poorly into our society's expectations that it seems obvious to virtually everyone that they're incapable."

Persistence to Unreachable Goal is Bad for Your Health

A recent study (search 17760771 on PubMed) found the following:

"The notion that persistence is essential for success and happiness is deeply embedded in popular and scientific writings. However, when people are faced with situations in which they cannot realize a key life goal, the most adaptive response for mental and physical health may be to disengage from that goal. This project followed 90 adolescents over the course of 1 year. Capacities for managing unattainable goals were assessed at baseline, and concentrations of the inflammatory molecule C-reactive protein (CRP) were quantified at that time, as well as 6 and 12 months later. To the extent that subjects had difficulties disengaging from unattainable goals, they displayed increasing concentrations of CRP over the follow-up. This association was independent of potential confounds, including adiposity, smoking, and depression. Because excessive inflammation contributes to a variety of adverse medical outcomes, these findings suggest that in some contexts, persistence may actually undermine well-being and good health."

A good argument for autistics not trying to become neurotypical, in my opinion.

Expectations and Hope

I'm at a conference about autism right now. Last night, a guest speaker about ABA gave his closing remarks, talking about raising expectations and hope for the future. Listening to him, I realized something. His whole idea of the kind of expectations you could have for an autistic child was fundamentally prejudiced.
There was no possibly of being autistic and living well in his view. The height of progress for an autistic, in his opinion, was when they came closest to the functioning of a neurotypical person. He viewed higher ability to function, as measured by speech, tested IQ, self-care, adult living placement - the usual - as synonymous with being less autistic. There was no place in his view for people like Amanda Baggs, who live well in their own home without testing high functioning on measures like speech and self-care. Or people like me, who are very much autistic but have no trouble speaking, minimal self-care problems, and a high tested IQ.
Contrast that with this quote from A Parents' Guide to Inclusive Education, published by the Saskatchewan Association for Community Living, which was being given out free at the conference.

"Myth #6: 'Your child is not ready to be included.'
Your child cannot 'get ready' to be in a regular classroom by being segregated from it. A child may never reach the 'level' of skill or behave the way that the administration deems as good enough. A child should not be discriminated against for not being the same as another child. Keep fighting for an inclusive placement. Your child has a right to be there."

Once, someone in the Schafer Autism Report said once (paraphrasing, because I can't find the exact quote - here's a reply to it) 'Suppose you were the person who, without treatment, was destined to spend your life banging your head on the walls of an institution, would you want someone speaking for you and counseling against treatment? No, I wouldn't either.' If I was in danger of being institutionalized and couldn't, for whatever reason, fight it myself, I wouldn't want ABA people fighting for me. They'd try to make me prove I'm 'capable enough' to get my rights.
Instead, I'd want the likes of SACL speaking for me. I'd want people who felt I deserved my rights no matter what my level of ability was, who felt that I could live a good life at any level of ability. I'd want people like Cath's mother in Does She Know She's There, who refused to institutionalize her severely disabled daughter when such behavior was standard. I'd want people like Amanda Baggs advocating for me. And (I'm lucky I can say this) I'd want my parents speaking for me, just as they did when my school wanted me to get Ritalin.

Mile Stones

Person 1: What's got him so upset?
Person 2: He's got a bad case of mile stones.
Person 1: Oh, yeah, I know how that hurts. You just feel so useless when your mile stones are acting up.
Voice Over: Mile stones can be good for you, but excess mile stones are harmful. They sap away the pride in your achievements and interfere with caring for yourself. A related condition is Shoulda Syndrome. Shoulda Syndrome is characterized by thinking 'shoulda done this' 'shoulda done that'. If you have Shoulda Syndrome, mile stones might be the underlying cause.

I heard of a disabled kid, about 6 or so, who had just recently been toilet trained and was going around excitedly telling strangers 'no more diapers'. I cringe to think of their reaction. Oh, most people probably were polite to her, but I doubt they thought of her the same way as a 2-3 year old saying the same thing.
In disability rights, I've often heard people saying that disabled people shouldn't be put on pedestals for doing things that are no big deal for disabled people. To a certain extent I agree, particularly if it wasn't really that hard for them either. But we can go to far the other way, and that's not good either.
I want the right to feel proud of my achievements, even if it's something like managing to touch the net when throwing a basketball instead of missing completely, o catching something thrown directly at me. Or successfully traveling alone by bus on an unfamiliar route. Just because those things are easy for most 18 year olds shouldn't mean I can't feel good about achieving those things, because they are an effort for me.
Just because one child takes his first steps when most other kids are running and jumping around doesn't detract from the effort it takes for that child, and it shouldn't detract from that child's sense of accomplishment. Too many delayed kids learn that no matter what they achieve in the areas they're delayed, it's always insignificant compared to others. This doesn't have a good effect on their self-esteem, nor does it encourage them to use the abilities they do have. In fact, it's a recipe for perfectionism - discounting what you did well while emphasizing mistakes.
Now, as many disability advocates have pointed out, praising people excessively for minor things isn't good either. In general, I think praise should be based on how much effort it actually took. It's not that hard for a paraplegic to sit and drink a beer, so it's not really praise-worthy, and praise for that is condescending. Similarly, many gifted children suffer from being praised for easy thngs too much - it may seem impressive for them to solve a math problem intended for a child 3 years older, but that doesn't mean it's a real achievement for them. Following the same rule, it is praise-worthy when someone does something that did take effort, like me catching a ball or getting safely to a new destination on the bus, or that one little girl using the toilet consistently enough to stop wearing diapers.
PS: My Dad thought up the funny conversation in the beginning. He was pretending milestones were something like kidney stones or gallstones.

Don't Be So Hard On Yourself!

Recently, I read a comment by a deaf woman who complained about people's reactions to her acknowledging that her speech can be hard to understand at times. Almost everyone replies 'Don't be so hard on yourself! Your speech is fine!' or something to that effect.
Thias annoys her, she says, partly because of the assumption that she's 'being hard on herself' by acknowledging a real difficulty she has, and partly because of the assumption that they know better how understandable her speech is. Granted, she can't hear her own speech, but she has a lot of experience with people's reactions to her speech, under different circumstances, which makes it clear to her that though her speech is usually fairly understandable, under adverse circumstances (such as talking to someone who is not very proficient in English) her speech is less understandable than most English speakers.
Recently, I experienced a similar thing. I was talking to the parent of an autistic boy I know and mentioned an idea I had (for a program where older/higher functioning autistics help younger/lower functioning autistics). She told me I should start something like that up, to which I replied that it would be quite difficult for me because of my organizational difficulties. She told me not to be so hard on myself, and that I was very smart - she could tell by how I talked. I tried to explain that in a one-on-one conversation about ideas, my strengths are more evident than my weaknesses, explaining how speech is a real strength for me, but she didn't seem to get it. She still thought I was being hard on myself.
(It's important to note that she's a good friend and a wonderful mother to her autistic son. One thing I admire about her is how she really gets that he's much more intelligent than his test results would suggest. She adamantly insists he is not 'profoundly retarded' as his IQ test scores suggest, something I agree with. His more overt abilities are in concordance with his test scores, but he shows signs of understanding much more than he can express.)
I was kind of disturbed by this. I'm not sure what to do about this. I know I have organizational problems, and acknowledging these has greatly helped me. Thinking that 'smart people can do this' led me to think I must not really be that smart. How can I get her to see that her attempt to reassure and encourage me is actually more likely to hurt me than help me (if I accepted what she said as correct)? She linked organizational skills to intelligence in her statements to me. She did so to help me feel better about my organizational skills, but a more likely result of such a link is for me to feel worse about my intelligence.
[A side note: my Dad just got my brother a ukelele, and the only human family member who hasn't been playing it is my mother. I can do Mary Had a Little Lamb, the riff to Smoke on the Water, and the scales.]

Telethons and Self-care problems

Two unrelated comments today:
Firstly, the Protest Pity anti-telethon blog thing is up. I didn't know about it until today, but apparently it's an annual thing similar to blogging against disablism day.
Secondly, I'm researching self-care problems in high functioning autistics. I'm thinking of maybe getting together evidence regarding self-care problems in people diagnosed as Asperger Syndrome in order to argue that the 'lack of significant delay in self-care' criteria of AS is misleading. So far, I've found the following articles: one comparing AS and Conduct Disorder in teenage boys, finding that, according to their parents, 50% of the AS boys and 95% of the CD boys were independent in basic self-care (washing, toothbrushing), 5% of AS and 40% of CD boys had no problems with decisions about self-care (eg deciding when to eat), 15% of AS boys and 80% of CD boys had normal telephone skills, 5% of AS and 35% of CD boys could plan their own travel, 0% of AS boys and 25% of CD boys were independent in buying major items, 5% of AS boys and 70% of CD boys had no trouble planning their own routine and 0% of AS boys and 60% of CD boys were independent in leisure activities outside of home and one studying AS or HFA adults that found that out of 16 individuals, 1(AS) had a regular job, 1(AS) was a university student, 3(1 AS, 2 HFA) had a sheltered job, 5 (2 AS 3 HFA) attended a day center and 6 (5 AS, 1 HFA) had no occupation, the one with a regular job was the only one not living off of public assistance, which in 13 of them was some form of disability pension, 9 lived in their own apartment, 1 (the student) with their parents, 5 in a group home and 1 in the hospital. Not much available, but the few studies done show significant difficulties for older 'high functioning' autistics. Note that I don't really think there is a significant difference between the different diagnostic groups or functioning levels, but if they're following the DSM, the AS people should have normal or near normal self-care skills. Instead, they have difficulties with are definately significant, in the sense of needing assistance or accomodation.
Anyway, I just thought of a way to link these two subjects together. One big problem with telethons is that they're raising money for a cure/prevention while providing nothing towards helping actual disabled people live well, with their needs met and their 'voices' (even if not actual speech) heard.

It Really is one Syndrome

Autistics are very diverse. Many people talk about the range from 'low functioning' to 'high functioning' (actually it's far from linear, and can change over time in an individual). There are autistics who talk in sentences at 18 months, autistics who never learn to talk, autistics who learn to talk late and end up with very good speech, autistics who loose speech skills, and many other variations, and that's just looking at speech (and just superficially).
With all this variation, some people think that certain 'types' of autistics have nothing in common, and barely (or not at all) qualify as having the same condition. And indeed, they can seem very different. When I was volunteering with autistic kids, I found a lot of variation - each kid was autistic in a unique way.
But when I started volunteering with all kinds of developmentally disabled kids, I saw even more diversity. Autistics are all unique, but all have various things in common with each other that they don't have in common with other disabled people.
And when I read stuff by other autistics, even people very different from me, they'll often describe things that are also true for me. Sure, we're all unique, but we have more in common with each other than with most people.
Ettina

videos of trisomy 13 and others

I was looking for videos of people with trisomy 13 (Patau Syndrome) on Youtube, and found the following:

Kutlay
Little trisomy 13 boy, probably 1 or 2 years old, sucking on a water bottle.

Kelsey
An almost 21 year old t13 woman, described as the oldest surviving trisomy 13 person.

There was also this one with a boy who tested as having trisomy 13 on prenatal diagnosis and later had no t13 cells and normal development. They claim he was 'healed' but really it's nothing special, it happens to many with prenatally diagnosed mosaic trisomy. Sometimes the trisomic cells are only in the placenta and not the baby, so trisomy will show up on both chorionic villus sampling (taking a sample from the placenta) and amniocentesis (amniotic fluid, with flaked off skin and placental tissue) but not on blood tests. The only effect in those cases are related to the placenta - premature birth, slow growth, etc. No major structural anomalies or developmental delay, except for that which prematurity can cause.

Individualism and the Two Disability Stereotypes

I think there are two main disability stereotypes, which I call the able-disabled and unable-disabled. The able-disabled is the person who despite their disability, can do X, Y and Z, who overcomes their disability to do those things, while the unable-disabled can't do those things and lives a miserable, limited or otherwise pitiful life. Our society has a tendency to split people up this way.
When I try to think of examples, I think of specific people for the able-disabled stereotype - Hellen Keller, for example. When I think of examples for the second stereotype, I think of generic groups - low functioning autistic, for example. Why is this?
I think society, when looking at people viewed as able-disabled, view them as unique and special individuals, who have individual qualities responsible for their success. They are the exceptions. Some say these special qualities are modifiable, others don't, but in any case this person is special, and not just as a euphemism for disabled.
However, even if they describe a specific person for the unable-disabled stereotype, the person is not viewed as individual but as representing a group. They are an example rather than an exception. So the person themselves is not considered important, rather they represent a group of people. Also, the focus is mostly on their disability, and if they mention personal qualities thought to be separate from the disability, it is in terms that suggest shades of the able-disabled portrayal (since the same individual is often described in both ways).
An example of this shift is with many parent descriptions of disabled children. I often wondered why certain behavioral traits were in among the various health problems and such whereas others were at the end. The reason is that they are viewed as problems due to the disability, or as positive traits despite the disability. Here's the typical format:

My child has X. I thought things were fine until [xe regressed/xe was born not breathing, or funny looking, or whatever/xe was X age and not doing Y] Currently, xe has T, U, V, W, X, Y and Z. All that makes it sound really bad, but xe [is a wonderful, happy person/can do X, Y, Z/has taught me so much/has greatly enriched my life].

Basically, it starts out describing the child with the unable-disabled format (which is the basic format for describing disability) then at the "All that makes it sound really bad, but" they switch to the able-disabled format. The specific order may vary, but it's remarkably similar. Parents often don't consider the able-disabled exceptions as such, but as exceptional, relative to most people (which is often described as rubbing off on siblings, parents (though they'll often give examples of why they're not perfect) or other people who know their child.
In that framework, it seems to me that often person-first language is intending to encourage an able-disabled view of disabled people, where the disability is peripheral. But why can't the disability be central without viewing the person as pitiful? For example, why split up behavioral traits into bad, disability related things and good, individual qualities?
When I look at behavioral traits, I often forget about good or bad and just accept what is without value judgements. I don't wonder if the hyperactivity of the Rett girl I work with is good or bad, or assume it is bad, but just think of it as a trait I have to plan for and react to (for example, by recognizing that being with her is tiring and not planning for strenuous things right afterwards).
Ettina

Being an Ally as Well as a Self-Advocate

I'm writing a book titled Normal Person's Burden, about disability rights. In one chapter, Disabilities and Parenting, I was describing parent allies and quoted a list of "what makes a good ally" that was originally posted by a Domestic Assault Prevention group regarding men, and then modified by Phil Schwarz and used in his conference presentation Indentifying, Educating and Empowering Allies.
As I was quoting this list, I realized that, as a "high functioning" autistic (although the line is blurry, since I'm in between Asperger Syndrome and BAP* I'm definately high functioning) I used those same principles in terms of advocating for "low functioning" autistics (those who are treated by society significantly worse than people like me are because they're more prominently autistic).
Which got me pondering. Generally, the difference between an ally and a self-advocate is that a self-advocate is the target of the kinds of discrimination they are fighting against, whereas an ally isn't. In my case, I've been the target of some of the discrimination I fight, but some aspects of the discrimination I fight are expressly stated not to apply to people like me. I've never been institutionalized, and probably won't ever be, although my flashbacks mean I may be seen as needing institutionalization if it's really bad. If need be, I can pass for normal in most situations, though in group conversations I have to pick between "shy" and "overtalkative". I've never been viewed as unable to speak for myself, except in the same ways NT** kids are. My self-care skills are only mildly impaired, so that with maybe a beeping watch or some more ingrained rituals I should be able to live "independently" with no support staff or government funding (other than maybe student loans and other stuff NTs also get) at some point in my 20s.
All of that means that my experience of disability discrimination is significantly different from that of people such as Amanda Baggs and Cal Montgomery, in the same sort of way that the experience of racism is different between a light-skinned black person who can pass for white and a dark-skinned black person who can't. Which means that in advocating for autistics in general, I am both a self-advocate and an ally/pseudoally.
Laura Tisoncik and Amanda Baggs discussed how never-institutionalized autistics don't understand institutions in their article Conversation on Institutions. From my perspective, reading that, it was similar to how I imagine an NT ally would feel reading about many aspects of discimination against autistics. Basically, I had to recognize that this was an experience I didn't understand, and be willing to listen. All that ally-type stuff. My printout of that article has a note jotted down about whether someone with PTSD*** due to some trauma other than institutionalization would get it if they were staff in an institution. I realize the answer is probably not, though they may grasp some things like hypervigilence if they are open-minded.
Anyway, what I'm trying to say is that I think it's possible to be both a self-advocate and an ally in the same movement, and presumably also possible to be both a self-advocate and a pseudoally. For example, people like Temple Grandin are held up as speaking for all autistics, yet Temple Grandin, for the same reasons as myself, doesn't understand what it's like for "low functioning" autistics.
Anyway, food for thought. I'd like more discussion of this concept.
* BAP - broader autistic phenotype, meaning they have autistic traits but not enough to be considered disabled.
** NT - neurotypical, meaning a person who has brain function close enough to average that society accomodates their kind of mind fairly well.
*** PTSD - post-traumatic stress disorder, a psychiatric diagnosis applied to people who, after a traumatic event, have symptoms such as being easily startled and irritable, re-experiencing emotions or sensations from the trauma, feeling emotionally numb, etc, to a point where it is seriously upsetting and/or interferes with their ability to function.
PS: I'm using "low functioning" mostly as a sociological category, to refer to the autistic people who are targets of certain types of discrimination I (and Temple Grandin, and others) am not a target of.