'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.

The Missing Voice

There's this one style of writing that really bothers me. It's when someone writes 'nonfiction' from the perspective of someone else who can't describe their own experience - usually a disabled child, although people do this with pets as well. An example is available here.
It's not that people do this both with pets and disabled people that bothers me. I think very often the offense at being 'treated like an animal' is about things that are problematic when done to animals, as well. And that's true in this case, although I'll be discussing why it's problematic to do this to disabled people.
Although one problem is that it can be hard to tell who actually wrote it, that's not the biggest problem either. Often it's obvious - frequent references to 'mommy thought' with too much detail to be anyone other than her, statements like 'I can't speak or write', etc. Other times, it isn't. One website I found, I actually couldn't tell who had written it - the disabled man himself or one of his parents.
In the Faces of Autism conference I went to, they asked people to put up their hands when they named certain groups of people attending. They listed parents of autistic children, teachers, therapists, etc. At the end, they said 'did we miss any group?' I and one other person put up our hands. They'd missed two categories of people - politicians and autistic people. (There's a funny Monty Python skit about this, too. You can see it here*.)
I think these are related problems. People tend to lump disabled people and their family into one group, and act as if their interests are the same. This is especially true with disabilities that are usually diagnosed in childhood and that affect communication. And lumping those two groups together almost always means only listening to parents.
Now, parents of disabled children need to have a voice, and they need to be heard. But that's not a big problem. It's not that hard to get people to listen to them. But so often, people don't even realize someone's voice is missing. They don't even realize that they don't know what the disabled people themselves actually want, how they actually view their own lives.
Back to the 'nonfiction' written from someone else's perspective. The big problem is that they don't seem to realize it's actually fiction. You can't actually write from someone else's perspective, and really get it right. I'd find nothing wrong with it if it came with a clear message that this was written by someone else trying to imagine what it's like from their point of view. I want people to recognize what that kind of writing really is - fiction. It's fiction just like a story from the perspective of a famous person (like the Royal Diaries series) is fiction. Technically, you might call it 'creative nonfiction', which is really a fictionalized account of real events. But it's not equivalent to telling the story from your own perspective or taking dictation.
Another concern I have is that people only tend to do this with those who can't tell you their own story. Imagine writing your husband's life from his perspective - not showing him what you wrote or asking him what it was like for him, just writing it. If you wouldn't be willing to do that, then why are you willing to do the same with your child's life?
This also ties in with the saying to parents: 'you are the expert on your child.' Well, you aren't the expert on your child. You're one of the experts on your child. But the one who really knows the most about your child is not you, but your child themselves. Even if you can't talk to them and find out what they know about themselves, never forget that they do know themselves in a way no one else can. Just because you don't know their perspective doesn't mean they don't have one, or that their perspective brings no new information. And your voice may speak for your child out of necessity, but never forget the voice that is missing.

* Sorry, no subtitles.

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.

Kanner autism

I hate how so many people misrepresent Leo Kanner's view of autism. They do it with Asperger's article, too, but at least they have the excuse that it's in another language (since the ones I know about are all English speakers). So I'm going to debunk several such claims.

"(The prevalence of classic Kanner autism, which is associated with moderate mental retardation, has not increased over the years.)"
http://books.google.ca/books?id=teMnqLotDm0C&pg=PA514&lpg=PA514&dq=Kanner+autism&source=web&ots=ra4jEJTOMr&sig=zNkdyNXmoZSF_fFIlw_e_vDivzw&hl=en

"Asperger, unlike Kanner, included people who had average to high IQs in his definition"
http://www.cbc.ca/news/background/autism/

In his 1943 article Autistic Disturbances of Affective Contact, Kanner said:

"With the non-language items of the Binet and Merril-Palmer tests, she [case 6, Virginia S.] achieved an IQ of 94. 'Without a doubt' commented the psychologist, 'her intelligence is superior to this'"

"A Binet test was attempted ... He [case 8, Alfred L.] finally complied in most instances in a manner that clearly indicated that he wanted to get through with the particular intrusion; this was repeated with each individual item in the test. In the end he achieved an IQ of 140." [Note: Alfred L and Virginia S were the only two children who cooperated enough for an IQ test.]

"Even though most of these children were at one point or another looked upon as feebleminded, they are all unquestioning endowed with good cognitive potentialities... The astounding vocabulary of the speaking children, the excellent memory for events of several years before, the phenomenal rote memory for poems and names, and the precise recollection of complex patterns and sequences, bespeak good intelligence in the sense in which this word is commonly used."

So clearly Kanner described children with average and above average IQs. Nowadays, the less cooperative children would likely have been tested and their refusals interpreted, robot-like, as wrong answers, just like my autistic friend who was declared profoundly delayed because he didn't cooperate at all with the test. Personally, I think Kanner's way, of declaring them 'untestable' and observing spontaneous signs of their abilities, is more fair.

"Most children and young people with Kanner syndrome will have moderate or severe learning difficulties and up to half may not learn to use spoken language."

http://www.southglos.gov.uk/NR/exeres/f55bba89-c85c-484a-b6ca-0165feaef454


"Kanners usually have a below-normal IQ
while Aspergers have a normal-above IQ
Kanners usually have a delay in speech
Aspergers usually don't"
http://www.autismspeaks.org/community/forums/archive/index.php/t-4438.html

The first part of these two statements is the same as the previous two innacurate statements. As for the second part, here's another quote from his 1943 article:

"Eight of the eleven children acquired the ability to speak either at the usual age or after some delay." [Of the speaking children, at least 5 spoke their first words before age 2, and at least 3 were using sentences by age 3.]

Although communication impairment, such as echolalia and not using speech communicatively, was present in all of Kanner's cases, most learned to speak, many at the usual age.

"Kanner’s Syndrome is often the lowest functioning end of the disorder, and these children (and adults) tend to be very drawn into themselves and have extremely limited communication skills."
http://ezinearticles.com/?What-Are-The-Different-Autism-Types-in-Children&id=510099


"Kanner described children who were severely affected. His description, and the downbeat prognosis persisted for the next 30 years."
http://www.patient.co.uk/showdoc/40000711

Regarding low functioning, Kanner's highest functioning case was Donald T., who in his follow-up in 1971 was described as such:

"Since receiving his AB degree in 1958, he has worked as a bank teller. He is satisfied to remain a teller, having no real desire for promotion. He meets the public there real well. ... He takes very little part in social conversation and shows no interest in the opposite sex. While Don is not completely normal, he has taken his place in society very well, so much better than we ever hoped for. If he can maintain status quo, I think he has adjusted sufficiently to take care of himself." [He wrote another article in 1972 giving case descriptions of several high functioning autistics.]

The prognosis was originally described in 1943 as:

"Five of our children have by now reached ages between 9 and 11 years. Except for Vivian S., [sic] who has been dumped in a school for the feebleminded, they show a very interesting course. The basic desire for aloneness and sameness has remained essentially unchanged, but there has been a varying degree of emergence from solitude ... Between the ages of 5 and 6 years, they abandon the echolalia and learn spontaneously to use personal pronouns with adequate reference. Language becomes more communicative, at first in the sense of a question-and-answer exercise, and then in the sense of greater spontaneity of sentence formation. ... Between the ages of 6 and 8, the children begin to play in a group, still never with the other members of the play group, but at least on the periphery alongside the group. Reading skill is acquired quickly"

Kanner made his opposition to institutionalizing autistics clear, and predicted poor outcomes for them, but if cared for in their own or a foster home, he predicted they would improve. A few would become high functioning enough to live and work independently, and those who didn't could still contribute.

"Kanner regarded autism as a consequence of harmful childrearing practices."
http://www.utoronto.ca/writing/paraphrase.html

And here they confuse him with Bruno Bettelheim, it seems. From his 1943 article:

"In the whole group, there are very few really warmhearted mothers and fathers. ... Even some of the happiest marriages are rather cold and formal affairs. Three of the marriages were dismal failures. The question arises whether or to what extent this fact has contributed to the condition of the children. The children's aloneness from the beginning of life makes it difficult to attribute the whole picture exclusively to the type of the early parental relations with our patients. We must, then, assume that these children have come into the world with innate inability to form the usual, biologically provided contact with people, just as other children come into the world with innate physical or intellectual handicaps. If this assumption is correct, a further study of our children may help to furnish concrete criteria regarding the still diffuse notions about the constitutional components of emotional reactivity. For here we seem to have pure-culture examples of inborn autistic disturbances of affective contact."

And in his follow-up:

"As for the all-important matter of etiology, the early development of the 11 children left no other choice than the assumption that they had 'come into the world with an innate disability to form the usual, biologically provided contact with people.' ... One can say now unhesitatingly that this assumption has become a certainty. Some people seem to have completely overlooked this statement, however, as well as the passages leading up to it and have referred to the author erroniously as an advocate of postnatal 'psychogenicity.'"

So even in the 1970s, it was already going on. People mischaracterized Kanner's words even back then. But back then, he could counter them.
Lastly, I couldn't find a specific quote, but I've read of children who developed normally until 18 months or so and then regressed being referred to as having 'Kanner autism'. Only one of Kanner's cases showed any regression, Richard M. (regression in pre-speech skills) but before his regression, he was described this way:

"The mother, in comparing her two children, recalled that while her younger child showed an active reaction to being picked up, Richard had not shown any physiognomic or postural sign of preparedness and had failed to adjust his body to being held by her or the nurse."

Kanner emphasized that these children were all noticeably abnormal in early infancy, commenting that they could not be called 'withdrawn' because they'd never been connected in the first place.

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.

An Insight Sadly Ignored

I'm not generally a supporter of Bruno Bettelheim, from what I've heard of him, but recently I found something he wrote that I really wish more people had followed.
In the American Journal of Orthopsychiatry, volume 26(3), pages 507-518, published in 1956, he said:

"All this would be quite easy to see if we would just listen carefully to what the schizophrenic children tell us, at least those who talk. They will let us know readily enough what kind of treatment they need..."

He then describes a case where a 'schizophrenic' girl told Anna Freud, her therapist, that she was a very different person in different situations and therefore Anna Freud really had a very limited understanding of her, seeing her in only one setting. Rather than listen, Anna Freud described it in this way:

"It struck me that here, disguised as a piece of 'technical advice,' we were offered some insight into the basic deficiencies of her ego structure. [and proceeded to give a long and convoluted interpretation which I will not quote here]"

He also has some interesting case studies, showing some issues still around today and probably more ignored now:

"A mother whose schizophrenic child lived at the School had been in prolonged psychoanalytic treatment. She was making good progress, but we felt that her influence on her child was so pernicious that they should remain separated. The mother's analyst thought that the mother needed to test her ability to be a better mother, and supported her in her insistence on a home visit. Reluctantly, we agreed to a visit of two weeks' duration. The child set fire to the parental bedroom while the parents were asleep there. No great damage was done and the parents viewed this as a childish prank. A year later, with the approval of her analyst, the mother again insisted on a visit. We were opposed, because the child, who was functioning quite well within the protected setting of the School, expressed great fear about what might happen on such a visit. Despite our objection the visit took place; then, while with his parents, the child died in a carefully contrived accident."

Murder of disabled children by their parents was certainly present back then. It chills me to think of what it was like for that child - clearly, he knew or suspected they would do something terrible to him. On the other hand, I'm glad that Bruno Bettelheim clearly views the killing of this child as a bad thing.

"Parents considered their boy feebleminded from the moment he was born. Since he supposedly did not understand, they spoke freely of how he ought to be put away, how he should never have been born. Autistic withdrawal led to his being sent to an institution for feebleminded children, where he was badly neglected and where he was often deprived of meals as punishment. This added to his conviction that his parents wished to kill him through starvation. He spent most of his first seven years in phantasies of how he would torture and kill others before they could kill him. (Such phantasies were typical among concentration camp prisoners.)"

This reminds me of Amanda Baggs' description of growing up with the expectation that she'd either be cured or institutionalized.
It saddens me to think that things like this were spoken about in the 1950s, and most people still don't get it. How long will it take before people start listening to us, respecting that we have just as much a right to life as anyone else, and recognizing that we are aware and being spoken in front of with hurtful statements hurts us too?

Eugenics Comments

On a list I belong to about rare trisomies such as trisomy 18 and trisomy 13, an interesting debate has come up as a result of me posting a link to a recent news article about abortion of 'seriously handicapped' fetuses. The list has publicly available archives so I just thought I might point to some of the stuff I find particularly insightful (note: these are mostly parents of trisomic children):

"I question how society can be so foolish to make judgments on quality of life that are not theirs to make. This was how the eugenics movement began. We fool ourselves by believing that having extremely strict laws against sterilization without consent will prevent a recurrence. It is all about judgment of human life."
http://www.freelists.org/archives/tri-med/01-2008/msg00052.html

And someone posted this link:
http://bioethics.seattlechildrens.org/events/pediatric_bioethics_conference/2007_pediatric_bioethics_conference.asp#presentations

"I find myself having to say often, Annie may have had a genetic condition, but after all, she was human. "
http://www.freelists.org/archives/tri-med/01-2008/msg00085.html

"I think our special babies are gatekeepers of a sort. As long as their health is managed ethically, all children are safe to receive appropriate care. However, when they are treated inhumanely, and when multiple nursing standards and hospital policies are violated (and acknowledged as such) some very serious questions need to be asked. The choice of most to terminate, must never reflect the care that children born with these conditions (and any person with disabilties, for that matter) receive. I think that this is how the individual choice to terminate based on " unbiased information" ultimately translates into a eugenic movement. Failure for the law and government agencies to react condones and confirms the existence of eugenics, in my opinion."
http://www.freelists.org/archives/tri-med/01-2008/msg00087.html

Ransom Notes campaign

NYU Child Study Center has an awareness campaign called 'Ransom Notes'. Here's what I emailed to them in reply.

On your webpage, I noticed the 'Ransom Notes' awareness thing, with stuff about ADHD, Asperger Syndrome, Autism, Bulimia, Depression and Obsessive-Compulsive Disorder.
I am diagnosed with PDD NOS, which is a condition related to Asperger Syndrome and Autism (in my case I'm more AS-like), and with PTSD, which in my case results in depression and mild OCD-like behavior.
I would like to say clearly that there is an important difference between the two types of conditions I am diagnosed with. PTSD is something I have, which causes me serious psychological pain and does feel a bit like 'being kidnapped'. In contrast, PDD NOS is something I am, which affects my thinking in such profound ways that I cannot imagine it any different, has many positive effects as well as negative ones, and only harms me in making me fit poorly within my environment - change the environment and I'm fine.
Portraying conditions like Bulimia, Depression and Obsessive-Compulsive Disorder as kidnapping a child is a vivid analogy for how it really does feel to have those conditions (I'm basing this off of both personal experience and personal accounts I've read by other people). Portraying conditions like Autism, ADHD and Asperger Syndrome as kidnapping a child is offensive to those affected by those conditions, and encourages others in an erroneous and harmful perception of them. That's not the kind of awareness I'd like. In fact, treating fundamental brain differences like they are separate from the person and a terrible thing is part of the reason I have PTSD (I experienced abuse in two very distinct settings, one of which was well-meaning but very harmful abuse from my teachers, who thought my differences were something wrong with me).
Worse, your descriptions of what the supposed 'kidnappers' are making the ADHD, autistic and aspie kids do is offensive as well. ADHD behavior is only a problem in certain circumstances. Studies have shown that if a teacher is highly engaging, less children meet behavioral criteria for ADHD - because ADHD kids are not incapable of paying attention, they just need more stimulation. And the idea that it's a detriment to others is a concept frequently used to justify treatment that harms the recipient or at the very least doesn't benefit them. It's justified with abusive behavior, but it is not justified when the person is merely acting annoying or weird.
Regarding the ability to interact with others, I have yet to meet a single child, with any disability, who was incapable of interacting with others - including many much more disabled than any autistic kid. I know one boy with severe CP who can barely move and can't speak, but he looks at things and groans to communicate. Interaction is a two-way street - he can't interact with someone who ignores him, but that's not really his inability. And social isolation, firstly, is in the eye of the beholder. It's likely in the month of December I will only spend one day with anyone else my own age. But I'm not lonely - I don't need interaction that much. Other times I do want friends, but no one wants to be friends with me. That is not a social impairment on my part, but their own intolerance of diversity - after all, openly gay teenagers often have trouble making friends too.
As for caring for yourself, who in our society really is independent? Apart from hermits living off the lands (ironically, many of them are probably on the autistic spectrum) no one is. But only if you're dependent in the 'wrong' way does it ever get noticed. My father can usually fix his own car. Most people can't, so they hire a mechanic. This is not considered a disability. Most people can tell time within about an hour or so, and can certainly tell when mealtime comes. I can't (in the absence of external cues). This is considered a disability. In another society, however, it might be the opposite.
Ettina

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.

Angry Disabled People

I was reading about how angry women are stereotyped, and was thinking 'how are angry disabled people viewed?' And here's what I think the answer is.
There are two ways angry disabled people can be viewed. The first is as 'bitter' about their disability. Even if their anger is not because they are disabled, but because they are discriminated against, it's viewed as an emotional reaction to disability. There's a phrase I've heard - 'bitter crpple' - which sums this up, except it's not just physically disabled people who are treated this way. Any disabled person who is treated as having enough of a mind to perceive how they differ from others may be viewed this way.
Michelle Dawson, an autistic woman, wrote a letter to the Canadian minister of health regarding autistic people being banned from speaking at an autism workshop where both parents of autistics and professionals working with autism would be allowed to contribute. She eventually received a reply in which the current minister of health said the following:

"I would like to express my sympathy to you for your struggle with autism. I appreciate how this disorder would have a profound impact on you and your family."

So rather than recognizing her anger at injustice, he decides to try to appease it by offering condolences, as if she was angry about being autistic, rather than angry about not being heard.
Some developmentally disabled or mentally ill people are not treated this way. Rather, they are viewed as if they are too incapable to notice that they are different or react to discrimination, and instead their anger is automatically attributed to their disability - for example, they are having an 'autistic meltdown'.
Even a neurotypical 2 year old can notice injustice, although they may not be able to explain or understand what is going on. If, whenever they expressed emotion, you immediately reinterpreted their emotion as something different and reacted as such, most toddlers would get angry. They would not be able to describe what you are doing, but they would be upset by it. Their anger would not be an inherent part of being a toddler or a reaction to how 'awful' it is to be so incapable. Instead, it would be a justified reaction to injustice.
Granted, toddlers, like anyone else, will get angry regardless. Frustration, tiredness, hunger - all those can make a toddler angry. But that doesn't mean they aren't capable of getting angry at injustice. People tend to overestimate what abilities are needed to recognize injustice. You need not be able to label it or understand words like 'discrimination'. All you need is to be able to feel unfairness.
Ettina

An Interesting Book About Helping

I recently got a used book called The Helping Relationship: Process and Skills by Lawrence Brammer. It's got some interesting stuff to say. One thing it says is:

"This voluntary quality of the helping process is a crucial point since many persons wanting to help others actually seek to meet their own unrecognized needs. Some helpers, for example, need 'victims'; the helpers may maintain relationships to satisfy their own affiliative or dominance needs and may even continue their relationship longer than necessary in order to feel needed. Doing anything for other people without their initiative and consent frequently is manipulative and destructive. Even when help is solicited and given with the best of human motives it may have an unplanned detrimental effect on the helpee. The reason is partly that persons being helped experience a loss of self-esteem."

I'd like to know what someone more experiences with receiving services thinks of this quote. It seems to me to describe some things I've heard disability rights people talking about, but I haven't experienced this sort of thing personally.

The Risks of Incorrect Assumptions in Facilitated Communication

Here are, in my opinion, the risks of incorrectly dismissing FC and of incorrectly accepting FC, for the disabled person and their family.
Incorrectly Dismissing FC:
From the perspective of the disabled person, they would get a method of communication only to have it taken away or ignored. Their attempts to communicate are thwarted, causing unhappiness, and their caregivers continue to do things to them that they don't want them to, or not do things the person wants.
From the perspective of their family, the consequences are less serious, but they are likely to have more difficulty interacting with and understanding the person. The disabled person may use bad behavior to communicate, which adversely affects the family. Also, they do not have the opportunity to truly get to know their child.
Incorrectly Accepting FC:
For the individual, the consequences depend on whether they know this represents communication. If they do not, it may be an enjoyable game, or it may be unpleasant and frustrating. If they know it is communication and that they're not typing what they really think, it's likely to be quite unpleasant. Either way, they may also suffer from wrong decisions made about their life based on what they supposedly are communicating. Other methods of communication may be stopped or not tried because the person is thought to be already communicating sufficiently.
For the family, they are barred from truly getting to know their child. If the person reacts to not communicating or to incorrect decisions made based on FC with bad behavior, they also suffer as a result.
In cases where the FC user has made an allegation of sexual abuse, the consequences for them are much more severe. They could be left to suffer further abuse despite their seeking help or taken away from good parents. If the allegation is true, the abuser benefits if they are ignored and suffers justly if they are listened to, whereas if the allegation is false, the alleged abuser suffers somewhat either way, but more so if they are listened to. The worst outcome is to allow real abuse to continue, so the abuse allegation must not be dismissed too easily. However, it harms both the family nor the individual if a false allegation is believed, so the situation should be carefully examined.
Some ways to minimise potential harm:

• continue to work on developing other methods of communication
• work towards reduced facilitation, as long as legibility does not suffer to the degree that they can't be understood
• do not make assumptions either of competence or inability (especially inability) - observe closely, they may show signs of understanding that are easy to miss.
• don't try to prove your assumptions, instead be open to possibilities
• use multiple facilitators, if possible, and look for confirmation and contradiction of communication
• do not assume that FC is an either/or thing - in many cases, there may be both facilitator influence and true communication, sometimes in the same message.

Ettina

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

Sirens and Autistic Siblings

I read an article called Sweet Surrender by a parent of an autistic boy who compared neurodiversity activists to 'sirens' urging people to give up fighting for their children. I tried to reply, but something was going wrong with my account so I couldn't.

I personally know several autistic people who have serious difficulties with communication and self care. One boy I know communicates mostly by pointing and grunting, sometimes using a picture communication device and sometimes signing a few words and very occasionally saying words like his name. A girl I know runs around saying words and phrases which are only loosely meaningful and she runs into trees and people because of motor planning problems. I take this girl swimming and she can lift her arm and leg and sometimes pull her pants down but otherwise can't dress or undress herself. I also worked with another girl who in reaction to a change in routine, started screaming and banging her head and when I tried to stop her from hurting herself she bit me very hard. All three of these people are on the autistic spectrum.And all three are wonderful, unique people. If I could cure them of their disabilities with no side effects, I wouldn't, because they wouldn't be the same people.I'd like people to stop equating the kinds of needs and problems people like my friends have with being defective people who need to be fixed. And it's not that they have some special talents. If they have such talents, they are not very easy to observe. But all of them are special people with their own kind of beauty.I am in favor of helping these people. The girl who bit me lives in a foster home with at least three other disabled kids who need a lot of attention themselves, and her foster mother is very overworked and stressed. She doesn't seem to have enough support to care for the children in her home. Also, I would love for them to be able to communicate more. If that girl could've said 'we need to use the other dressing room, I'm not used to this one' she'd have been less likely to hurt herself or me. The other two aren't aggressive or self-injurious, but they understand a lot more than they can express and it must be frustrating to be unable to tell us what they're thinking, especially when they need something.Also, I don't see how it's any easier to accept your child than try to cure them. I used to think there was a big difference between mildly autistic people and severely disabled people, and that of course we don't want severely disabled people. When I challenged that and became more accepting of severely disabled people, it became painful to read discriminatory things that I used to be fine with. A parent who decides their child needs to be accepted for who they are will find it harder to deal with the well-meaning people who want to change their child. Also, what supports there are for disabled people often come in packages that require people to deal with a lot of discrimination. Besides, it is hard to accept that you have been discriminatory, especially if it has hurt someone you care about. If you are disabled, accepting yourself makes it easier, but if you can blind yourself to discrimination and have it not hurt you, that is easier than fighting it.

Also, my Mom found a New York Times article called Her Autistic Brothers, about a 14 year old with autistic twin 16 year old brothers. A lot of the article is pretty good, but there's some parts I don't like:

"Because of the particular challenges of autism, siblings of children with the disorder tend to have a harder time than siblings of children with other sorts of special needs: they enjoy fewer positive exchanges with their brothers or sisters and show more behavior problems themselves. Fewer positive interactions might simply follow from the fact that the disorders on the autism spectrum are characterized by social deficits — from difficulty with eye contact and absence of reciprocity on the milder end to total lack of speech in severe cases. But it has also been shown that typically developing children have trouble forming a concept of autism, which may itself have an impact on the way they relate to their siblings."

Firstly, it's far worse to be a sibling of a kid with rages. I've been a foster sibling to two kids with psychological issues who both had rages, and the effect is similar to being a child living with spousal abuse. Even if they don't mean it and you know they don't, it's hard to deal with someone who is screaming insults and maybe even physically attacking someone.
Secondly, autism doesn't cause social deficits, but rather social differences. Autistics tend to need more alone time and have an odd pattern of interacting. If those are dealt with well, an NT sibling can have plenty of good interactions with an autistic child.
In general, I think this article doesn't address the issue of how the family deals with the disability. I can certainly see how it would be hard to be the NT daughter of Alison Tepper-Singer (in the Autism Every Day video) and her kind are far more common in the autism community than other disability communities. I bet it's much easier to deal with a disabled sibling if you are told they have 'different genes, same value' (a slogan I saw on many advertisements by the Canadian Down Syndrome Society) than if you are told it's a living hell to have to deal with someone like your brother or sister. And it's not just the (very real) differences between autistic kids and Down Syndrome kids. I've seen it in families with children with rare chromosome anomalies. If the condition is associated with autism but the behaviors aren't recognized as autistic, they seem to be more accepting than if they know the condition is associated with autism. I think it's that the culture of the mainstream autism community is so vicious that if you buy into what they say, it makes it much harder to cope.
In terms of forming a concept of autism, I saw an excellent book called All Cats Have Asperger Syndrome. It describes Asperger Syndrome with pictures of cats on each page. For kids who are familiar with cats, that kind of book seems like it would be a great help. But it seems to me that if you simply explain to the kid why their sibling is acting oddly in numerous 'teachable moments', they could easily get a pretty good understanding of autism.

"In the car, they demanded that their mother make only right turns — left turns or driving in reverse would provoke screaming fits. “We were complete prisoners,” Jennifer says. “We couldn’t go anywhere.” She remembers one time, after the boys tore up the house yet again, that she just sat down on the living room floor and sobbed, with Tarah by her side."

This is an example of the problem. I can't think of anyone among the people I've known whose kids have chromosome anomalies with an unrecognized association with autism who described themselves as prisoners of their children. This seems to be something about the autism community. It almost makes me feel like I should avoid telling these parents what their child has in common with autistic kids, but I hope if I tell them the right way they'll find the better part of the autism community - the part that is dominated by autistics themselves, and some parents, especially autistics with autistic kids.

Recovering Racist

I've been rereading a book of mine, called White Girl. It's by Sylvia Olsen. In this book, a girl named Josie is living with her single mother. Both are white, and like many white people, don't think much about race. Then Josie's mother falls in love with Martin, an Indian (as he calls himself) from the nearby reservation. They get married and Josie and her mother move in with Martin. Josie, as the only white kid on the reservation, comes to understand a lot about race that she'd never thought about before.
One scene made me think. In this scene, Josie's Mom is talking to Josie's grandmother Mavis about her plans to marry Martin.

Mom had argued with Mavis about Indians on the phone, two weeks before the wedding. Mavis obviously had told Mom you couldn't mix oil and water. I imagined her voice: "It'll never work. And furthermore, you should think about Josie. The Indian reserve is no place for her."
"You're prejudiced," hollored Mom.
Of course Mavis must have denied it.
"What do you think?" Mom said in a controlled voice. "You think Indians are slinking around the corners of the reserve waiting to pounce on a little white girl?" (How was that for irony?)
I didn't hear Mavis's response, but it was what Mom said next that made me understand the trouble she was in now.
"Anyway, Mom," she had said, "Martin isn't wild and stupid and drunk like all the other Indians. He's different."

(The irony was that when Josie's new friend Rose asked Josie's Mom if they could go for a walk around the reserve, Josie's Mom was afraid of the same thing she accused Mavis of fearing.)
I thought about the irony of a racist calling another racist prejudiced. I realized that it's far more common for people to point out other people's prejudice than their own. Partly it may be that it's modeled more. It also may be that people simply don't realize they have a certain prejudiced view until they stop having it, that looking at your own prejudices makes them collapse.
I was thinking it would be good if people talked more about how to recognize when you are being discriminatory and change your own viewpoint and behavior. I once read about a group called Recovering Racists, who wear buttons announcing that they are Recovering Racists. Apparently this tends to get a lot of comments from non-white people.
Thinking about them, I decided to examine if I've been discriminatory towards disabled people recently. An example popped into my mind.
I volunteer with an activity program for disabled kids. It just ended for Christmas, but I'm planning to sign up again when it starts in spring. One boy in the program has severe CP, and can't sit up without help. He can't talk, but moans sometimes. I have repeatedly underestimated how much he understands, automatically slipping into viewing him as a 'vegetable'. I was surprised in the summer program when I overheard his mother saying he woke up really early on the first day because he knew this program was starting and was so excited, since I hadn't realized he enjoyed the program since he seemed unable to participate much. Just recently, on the last day of the fall program, he was moaning and the program coordinater commented that he was sad that it was ending. All the other kids were having fun, not thinking ahead to the fact that this was the last day, but this boy anticipated that he wouldn't be coming there next week and was upset. I need to learn to recognize that just because someone can't move much or talk doesn't mean they aren't aware.

Viewing Disabled People as Childlike

Amanda Baggs has recently posted a thing about Bernard Rimland's death. John Best commented with a bunch of nasty comments, one of which was telling Camille that she should giver her child treatment for mercury poisoning 'so that it will be out of diapers someday'. As well as the reference to an autistic child (does Camille even have a child? I can't remember. If so, how would he know if xe is in diapers or not?) as it, this comment also shows the view that being in diapers all your life is a horrible thing.
Disabled adults are often compared to children, and disabled children to younger children than they are. Often this comparison seems meant to devalue disabled people. I've seen people say the same nasty things about newborns (claiming that there's nothing going on in their minds) as they do about severely disabled people. I've seen people describe disabled people as 'perpetual children' in a way that implies that being a perpetual child makes you less worthwhile.
Often disabled people react by insisting they are not like children. But they don't ask why it is that they are being compared to children, or why this should be a bad thing. What's wrong with being childlike? Why are disabled people so often compared to children?
It seems to me that the commonality is dependence. Disabled people and children need more assistance than nondisabled adults. Disabled people and children have more difficulty contributing in the strictly defined way that our society seems to value.
A lot of people seem to view children as being worthwhile mostly because they will be adults someday. People talk about children as 'the future'. It's like children are simply adults-to-be, and what worth there is to childhood itself is mostly in how it prepares you for adulthood. If you consider children's worth to be primarily that they'll be adults sometime, and the care given to them primarily as investing into our future, then a 'perpetual child' would be waste. A perpetual child would be receiving without giving, a burden on others. That is precisely how disabled people are viewed.
But I think there is worth in children besides who they'll be. I find worth in who a child is, right now. Children contribute, as children, things that, though they are devalued by society, are very worthwhile.

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.