Wanting to be What You're Not

[Note: In this article, 'transgender kid' means any kid who fits the societal roles for the opposite gender better than they do those of their own gender. 'Transsexual kid' means a child who truly considers themselves to be the opposite gender, not just as a transient phase but as a lifelong identity.]
I just found an article by Feministe about 'gender identity disorder'. At one point, she quotes Kenneth Zucker, a psychologist well-known for his attempts to train transgender kids into fitting gender roles, who said:

"If a 5-year-old black kid came into the clinic and said he wanted to be white, would we endorse that? I don’t think so. What we would want to do is say, 'What’s going on with this kid that’s making him feel that it would be better to be white?'"

I agree. I would consider that black kid to have a problem* which is best solved by helping him accept his own race rather than changing his appearance. But there are some big problems with Kenneth Zucker's analogy.
Firstly, if I was trying to help that black kid accept himself, I would go about it completely differently. Imagine, for the sake of argument, that this boy is insisting on being white because he's not very musical, he does well in school, etc, and that just doesn't fit with his idea of what black people are supposed to be like. Rather than pressuring him to enjoy music more and be less committed to his schoolwork, I'd encourage him to broaden his concept of what it means to be black (actually, if I was his therapist, I'd probably refer him, because this is better done by a black therapist who can be a role model for him). I suspect at least some transgender kids are basically like this - they don't realize people can break gender roles and still be clearly of that gender.
It's possible, of course, that the hypothetical black kid is wanting to be white because 'white is better'. In that case, I still wouldn't try to make that kid act more conventionally black, because that's irrelevant. I also wouldn't denigrate white people, because racism isn't any better if you just switch targets. Besides, if this kid not only wants to be white, but actually on some level actually views himself as white, then denigrating whites would just make his self-esteem issues worse.
And that leads into another problem with this analogy. Whereas black kids who want to be white usually don't consider themselves white already - even on the inside - transsexual kids don't just want to be the other gender, they feel that they are the other gender. They just don't look like they are. That's an important distinction. The most important thing is for these kids to accept what they are, and transsexual kids are not cissexual kids of their natal gender. They are transsexual kids.

* I'm assuming it's been determined that this kid actually understands what black and white, as racial terms, actually mean. Lots of young children don't. I've heard of light-skinned black kids saying they're white because their skin is almost the same tone as the white people they know, or white kids expressing fear of black people because they're imagining someone whose skin is truly black (like a kettle) instead of dark brown.

Finding Agreement

There is a listserv I've joined recently, about girls/women on the autistic spectrum, called Autism_in_Girls. It's got a mix of parents of autistic girls, autistic women and various other people.
Anyway, I started out commenting on what people said that triggered posts from me, just as usual. Some were about various features of autism, such as one person wanting to know about anxiety in autistic girls, but when some people posted about biomedical treatments for autism, I commented on that as well. I wasn't as careful as I sometimes am about phrasing my comments diplomatically, and this list has a number of people who support biomedical treatment of autism, so an argument broke out. When someone asked whether I'd come to this list in order to upset people, I felt terrified. It was like I was in a village hearing someone yell "we'll drive the witch out of town". I felt like I was about to be cast out.
So far in this story, it's just what I've had happen on many lists. I say what I think and feel, and everyone likes my unique contribution, then I say 'the unsayable' and people suddenly turn against me. Usually what happens next is that I fight for awhile, and then leave the group, feeling beaten down emotionally. But that's not what happened on this list.
I argued awhile, trying to clarify that I hadn't said any of them were bad parents and the various other things people had read into what I'd said, trying to explain what I really meant and why it was important, and then something really unusual happened. I connected with one of my fiercest opponents.
To summarize what happened, the other person (a mother of an autistic girl) said she'd learn much more from me telling my story than posting inflammatory comments. I replied with a reference to the definition of self-narrating zoo exhibit, saying I didn't want to be one. She replied to that by saying she didn't want me to be a self-narrating zoo exhibit - she wanted me to say what was meaningful and why, how my story shaped my view of autism, what made me say the things I said. She wanted to understand me, in short.
And in reply to that, I took a risk and gave her exactly what she'd asked for. I told my story (in two segments). For those of you who don't know, I was sexually abused by my cousins, attended a really bad school from K-4, attended a somewhat better school with a bullying problem from 5-6, was homeschooled from 7-9, read about neurodiversity and self-diagnosed as autistic at 14 or so, attended a high school for grade 10, was diagnosed autistic at 15, and have been homeschooled for grades 11-12. My parents never thought there was anything 'wrong' with me and refused to have me diagnosed with anything other than PTSD, not because they didn't realize I was different, but because they saw no problem with how I was. This is a brief summary, I told my story in much more detail on this list.
And the risk was worth it. I felt very exposed, saying so much about myself to people who were hostile to me, but after that they weren't hostile any more. They still don't agree with me on many things, but I think they're coming to understand my viewpoint. We've made peace, though I don't know how to go on from here to regular conversation again. I'm still trying to figure out what happened. I'd love to know how this can happen in other settings, but I don't understand it, or how much of it was under my control.
On thinking about it, though, I have some theories about things that may have made this different from other similar encounters.
Firstly, I wasn't the only one. There are several autistic women on this list, one of whom was quite vocal in supporting me (and one who was confused by much of it and kept asking people to clarify, which we did as much as possible). I've read in social psychology textbooks that one person expressing a minority viewpoint in a group has little impact on other group members, but if even one other person expresses agreement, the minority is much more powerful. So that might be part of it - though I've seen times in which multiple autistic neurodiversity advocates argued with a majority of people looking to cure autism and eventually each of them were successfully driven away, so this can't be all that made a difference.
Secondly, a major person on the other side of the argument, though she attacked me personally early on in the argument, used quite a lot of logical discussion and trying to clarify her understanding of my viewpoint as well. Not only did this make it much easier for her and I to come to an agreement in itself, but it also encouraged me to argue better myself. I admit that I did some personal attacks, though mainly towards people group members supported rather than group members themselves (eg, I said 'reputable DAN doctor' was an oxymoron), but in reaction to her model, I stopped doing that.
Lastly, I think I was different. Some of this took place during the lead-up to the ARM conference, when I was getting a really heavy dose of anti-autism stuff while simultaneously having a lot of personal support, and the bulk of it took place right afterwards, when I'd had a big shift in my viewpoint of parents of autistics as a result of my mother and the numerous activist mothers I met at the conference, as well as a shift in understanding myself and my own story (which I should probably blog about soon). That conference made me much more confident as well, and therefore less prone to defensiveness in reaction to that argument. I was able to confidently say 'no' to a request for proof of my diagnosis, and rather than feeling like my story was too atypical to teach anyone and would just show I had no right to talk about autism, I felt that my story illustrated something useful and significant.

Creating Panic

I've been meaning to write this since we went to the ARM conference, but I've been putting it off thinking I'd link to our conference presentation with this. Then my mother pointed out that our conference presentation has some stuff about me, such as pictures, that I'd rather not have people viewing over the Internet. So, if I can think of a way to edit it so it doesn't reveal stuff I don't want revealed, I'll look into to putting it up, but in the meantime and in case I don't put it up, here's the post I was thinking of.
I've known for a long time that many parents of autistic kids are desperately worried about curing their children. It's hard to do much in autistic self-advocacy without seeing that. And I knew the 'experts' were reflecting this desperation by peddling miracle cures. I just sort of assumed that parents were so desperate because of societal intolerance for difference, and that the experts were simply responding to that. This is the idea encouraged by a lot of criticisms of quacks 'taking advantage of people's desperation', an idea fairly accurate in the area of cancer treatment that has also been applied to autism treatment.
But my mother's conference presentation argued something different. She looked at the stuff that I found, and suggested that the experts were in fact creating this desperation, not just responding to it. When they say unfounded claims like '90% of untreated autistics are institutionalized' (popularly tossed around by ABA proponents, with no reference ever being given) or 'you can't wait nine months for an assessment, you can't even wait two months' (which was said by Dr Greenspan in the book Could it Be Autism?), they aren't just getting it wrong, with no motive for it. They are, in fact, creating demand for their product, just like advertisers do.
This doesn't mean society's attitudes towards difference aren't part of it. They are. The very reason these dire threats carry so much sting is because people are scared of disability. And they also feed into this, in that such threats make people even more scared, but I know that fear of disability came first. In fact, in the 1800s, the 'experts' played a much more positive role, counseling against things like keeping your disabled son locked in the attic and saying 'we can teach them something' (see On Some of the Mental Affections of Childhood and Youth, by John Langdon Down). That worked to bring them into their role of treating and educating developmentally disabled people. Now they're doing something else to maintain and build that role.
And while I don't know what the 'experts' are thinking when they do this, I think many of them are well-meaning. This might, in fact, be unintentional, be them simply repeating what they've been taught from outdated case reports of institutionalized and neglected or just simply unusually severe cases, and comparing those reports with the children they've seen with treatment. But in some cases, it could actually be intentional.
What made me realize this was my father's obsession with Westerns (I'm not sure why, he always criticizes them as poorly written, but he likes to read them), because he happened to mention that many doctors in those stories would exaggerate the severity of their patients' conditions so that when what they predicted didn't come true, their treatment would get the credit. And when a child who was described as echolalic and noncommunicative (as those terms are used, not always accurately) at 5 years old develops communicative speech and isn't institutionalized, if parents knew that Leo Kanner's follow-ups back when psychoanalytic treatment was in vogue found that outcome to be relatively common for kids who were echolalic at 5, they wouldn't be as grateful to the ABA therapists as they'd be if they'd been told their child would still be echolalic and noncommunicative as an adult.
This also explains the tendency for parents to actually view their children more negatively after diagnosis. Although parents who misinterpreted troublesome autistic behavior such as literalism or sensory overload as defiance or manipulation often view their child more positively after they are diagnosed, many parents actually viewed many of their children's differences fairly well pre-diagnosis. One parent, in a book I read, talked about how she though her kid was very focused, organized and intelligent - after diagnosis, she interpreted the same behaviors as indicating overfocused attention, repetitive play and splinter skills. It may be partly an accurate shift in expectations, since a non-autistic gifted child typically does better than an autistic child, but partly it's that such behaviors are overtly recategorized and relabeled, even when both labels are equally accurate or the pre-diagnosis one was more so. Cute little quirks suddenly become signs of a disability (another example, in Her Name is Montel, is when Montel's father finds out her odd catlike cry is a sign of Cri-du-Chat Syndrome).
Here are what I see as the major components of how the 'experts' create panic and sell their therapies:

• unrealistically negative prognosis - such as the 90% institutionalized quote. This can occur without any of the other features in doctors who aren't selling any treatment, but often goes along with promises of miracle treatments to change that prognosis.
• reframing neutral or positive traits as negative - as seen above in the shift from seeing a long attention span to seeing overfocusing.
• creating urgency - 'you can't even wait two months'. This means that parents do not have a chance to think through what they are doing before they do it.
• rosy promises of the treatment - such as, in ABA, the repetition of Lovaas's 47% cured statistic without explaining how Lovaas defined cure, how his treatment differed from modern ABA and the lack of independent replication or evaluation of his 'cured' cases.
• a theory that is never studied, changes when challenged, or both - this is also seen in ABA with the repetition of the neuroplasticity theory (ABA changes the brains of children so dramatically as to erase or reduce autism) in the absence of any study, or in the ever-changing ways the anti-vaccination movement finds to blame vaccines for autism.

(Can you think of any others? I'm sure I'm missing some.)
This shift in my viewpoint makes me more sympathetic to mothers, and also highlights the importance of critical analysis from multiple perspectives. I naturally tend to loook at autism from the perspective of an autistic person, while my mother sees it from the perspective of a parent of an autistic kid. Both of those perspectives, combined with critical analysis of the messages society is sending, give useful and enlightening interpretations that together can give us a more complete picture of what is going on.

What I Saw Today

Later this month, my mother is (with my assistance) presenting a conference paper about the 'war on autism' metaphor. It's a very important topic, and for the most part I've enjoyed helping her prepare her conference paper. But today...
Today, my mother said she wanted several pictures from the Autism Every Day video. Because she doesn't understand computers very well, I volunteered to get the pictures for her. And to do that, I had to watch large chunks of the video. And you know what I saw?
I saw a child kiss her mother, as her mother complains about her 'always wanting attention'. I saw that same child later being prompted to say 'I love you' - the mother would rather her say a meaningless prompted phrase than spontaneously show her love. I saw that same girl come up to her mother when she was talking about something upsetting and say 'what are you doing?' in a dismayed tone, then walk over to look out of the window as her mother talks about contemplating murder/suicide in preferance to a bad school placement (I've been in bad school placements, and they're not pleasant. But they're not worth dying over.) I saw a child being filmed having his diaper changed, and his mother commenting about how much she hopes he'll be toilet trained soon. I saw a kid trying to engage his mother in interactive stimming, and her saying 'no' and indicating he shouldn't stim. I saw parents pinning their only hopes on a slim chance of a cure, rather than learning to live with a different kind of child. I saw the stark dichotomy between kids being kids and parents talking tragedy.
And my reaction was the same as it was when my teachers treated me unfairly, when my classmates in a new school rejected me for no apparent reason, when people in various extracurricular programs expelled me or told my parents to take extra measures to 'control my behavior' in those programs. Why don't they like me?
Some people think this is just parents expressing their feelings, to raise awareness in order to help their children and others like them. That's not what this is. This is hate. Oh, sure, they 'love their children' - they don't really. Not in the ways that matter. You don't treat people you love like that. If they were talking about neurotypical kids like that, very few people would consider them loving parents.
Autistic people are supposed to 'lack empathy'. OK, if you guys have empathy and we don't, prove it. Watch that video, and imagine they're talking about you. Imagine your parents saying things like that about you, or watching someone else say those things about traits their kid shares with you. If you're part of another group that is discriminated against, imagine watching people say things like that about your group in the presence of children of that group. Imagine fathers talking about how they hope they can get a sex change operation that can make their daughter a boy (not because she is actually a boy inside, and has said so, but because they'd rather have a boy). Imagine white parents talking about thinking about doing a murder-suicide with their black child because the school system is segregated. Imagine straight parents talking despairingly about how their gay kid has had 'so much stolen from them', because, among other things, they'll never marry a girl and have kids with her.
Oh, you may think it's different, because autism is different. It isn't. Yes, we can't do many things neurotypicals can. But our worth, our happiness, does not hinge on that. It should not hinge on that. We deserve to have parents who love us, not their images of what we were supposed to be. We deserve to have parents who pay attention to our expressions of love for them, rather than demanding something artificial instead. We deserve to have parents who can talk about our futures without dread and tears, who can see a future where we remain ourselves and get treated with respect.
Luckily for me, I had that. But so many kids do not.

PS: I'm really upset right now, so I didn't phrase it nearly as diplomatically and carefully as I usually would. If you are a parent of an autistic kid and are offended by this, just think: your kid might someday write blogs like this. Try to make sure they can truthfully say the second-to-last sentence 'Luckily for me, I had that.' If you're thinking 'I just want my kid to be able to write like you can' and using that to justify all this, then remember - what's the point in teaching your child to communicate if you're not willing to listen?

Are Lovaas's 'Recovered' Kids Really Normal?

Most of you have probably heard of Ivar Lovaas's 1987 study in which he reported that 47% of autistic kids who got early ABA had 'normal functioning' and were therefore cured of autism.I just found a follow-up study published in 1993 that examined his experimental and control groups, including reporting test results for each of the 9 'recovered' kids (10-16 years old). The results are very interesting, and not exactly consistent with his claims.
WISC-R verbal, performance and full-scale IQ and subtest scores are reported. According to this source, a difference of 11 or more points between verbal IQ and performance IQ is clinically significant. Out of the 9 'recovered' kids, 7 showed a clinically significant difference between VIQ and PIQ by that definition (3 higher verbal IQ and 4 higher performance IQ).
The same source describes the use of a discrepancy calculation of subtests that are significant strengths and weaknesses, defined by being 3 or more points from the average. Normal kids typically have no significant strengths/weaknesses on verbal IQ, one on performance IQ and two on full-scale IQ. Assuming that more than that number of discrepant subtest scores indicates abnormal scatter, 5 children had abnormal scatter (all of them showing VIQ/PIQ discrepancies).
On the Vineland Adaptive Behavior scales, all (except one kid who wasn't tested) scored within the normal range on all areas, but 5 had at least one score in the borderline/low normal range (70-85). I don't know of any norms for discrepancy between Vineland scores and IQ, but 6/8 of them had Vineland scores at least 11 points below IQ (Vineland scores have the same normal range as IQ). This suggests they were functioning more poorly in practical areas than their IQs would predict. (And makes me very concerned for these kids, as an unrecognized mild self-care impairment can cause serious problems once you enter adulthood.) In terms of the Vineland Maladaptive Behavior Scale, 3 kids had clinically significant behavior problems on that scale.
On the Personality Inventory for Children, 6 scored in the clinical range on at least one subscale (2 not tested). Lovaas noted high scores on the Intellectual-Screening subscale could be explained by their history of classic autism, because many of the questions on that scale are retrospective, such as when the child started talking. Excluding that subscale (on which 3 had scores in the clinical range), 4 had scores in the clinical range on at least one subscale (not counting the Lie, Frequency and Defensiveness scales that try to test how honest the person was, on which 2 kids scored highly - one of whom had no other elevated scores). Another 2 had at least one score in the borderline range, though none in the clinically significant range.
Overall, combining all three measures, all the children had definite abnormalities (VIQ/PIQ discrepancy and/or clinically significant behavior problems). Not enough information is available to decide if they were still autistic (though many of the abnormalities they showed are common among autistics) but they certainly weren't neurotypical.

References:
Lovaas (1987): Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9

McEachin, Smith & Lovaas (1993): Long-Term Outcome for Children With Autism Who Received Early Intensive Behavioral Treatment. American Journal on Mental Retardation, 97(4), 359-372

[Correction: one child, RS, should actually be classified as possibly abnormal rather than abnormal. I misread one of his PIC scores.]

Insults to Discriminatory People

I've heard many people who support cure and prevention of autism say they find the word curebie insulting. Recently, I found a man who thinks white men are best saying he finds the words racist and misogynist insulting. As an autistic rights activist, he compared those words to the word retard, that so many autistics find insulting.
Instinctively, I dismiss those ideas. It's nothing alike. But then, I stop to think. Is it similar? Is calling a discriminatory person a hurtful word because they're discriminatory morally equivalent to calling the target of discrimination a hurtful word?
On closer reflection, I come to the same answer. No. But now I know why they aren't really the same.
Firstly, being a racist, a misogynist or a curebie means you are hurting others. When you show your opinions to other races, women, or disabled people, you hurt them. This is a fact. A big part of people's dislike for these terms seems to me to be an unwillingness to admit they are hurting someone. But that's why Native people have such high rates of alcoholism, child abuse and suicide. It's because they are harmed, systemically harmed, by racism. That's why women are more often depressed, more often victims of sex crimes, and make less money on average than men. We are also systemically harmed by sexism. And that's why adult autistics have such high rates of depression, why some autistic people wish they were never born, why prenatally diagnosed autistic people very well might never be born. We are systemically harmed by disablism.
Secondly, it is a choice, to a certain extent. Your beliefs largely depend on what you have been exposed to, but if you decide to accept that your beliefs are hurting someone and make a commitment to change, you can. You are born with your race, your gender and your pattern of abilities, and those are extremely difficult to impossible to change. I know it's possible to have facial surgery and bleach your skin, but you don't become a white person that way - though you may be able to fake it. Technically, people who've gone through a sex change surgery aren't exactly the other gender - they're physically in between, and genetically their natal gender. And there are no cures for autism, even though some autistics can learn to pass as neurotypical. It's harder than it sounds, too. Even I have trouble passing perfectly, and I'm only very mildly autistic. But even mild autism pervades how you think and by extension, how you behave.
There are some things very hard to change that hurt others. A good example is pedophilia. It's probably about as hard to change as being gay. And there are a bunch of ways people are working on preventing and curing pedophilia, and that's valuable research, for the sake of the children that pedophiles are attracted to. Your beliefs aren't easy to change, but compared to your sexual orientation, it's no big deal.
And one last thing. Autistics, black people and various other groups have chosen names for themselves, that offend no one. Curebies, misogynists and racists haven't. They don't seem to just want a different name - they don't want any name for what they are (except maybe 'normal'). I can't accept that. I need to be able to name those attitudes, and the people who hold them. That's how we can stop the harm these attitudes cause - by looking at it clearly.

Does Mercury Poisoning = Autism Have to be Vicious?

There is a significant subset of people, particularly parents of autistic children and professionals working with autistics, but also a few autistics, who believe that in some or all cases, autism is caused by mercury poisoning (this theory is not supported by most scientists in the field of autism).
The biggest problem I have with the people who support a connection between mercury poisoning and autism (hereby referred to as mercury-autism people) is not that they believe a theory which is unsupported by the evidence and make factually innaccurate claims, but that their view of autistic people is generally very offensive. Kathleen Seidel wrote an article called Evidence of Venom documenting hurtful ways that autistic people are described by members of the yahoo group EOHarm (I also joined that group to protest how they referred to autism, was viciously flamed, and then was asked to leave by Lenny Schafer, who runs this list, because I was 'being offensive'). Another person, 'Fore Sam', regularly posts offensive comments on autistic rights blogs. [Addition: an example here, Fore Sam described one person as 'jealous that he wasn't named as a co-lunatic' and referred to the neurodiversity movement with the phrase 'what a bunch of scumbags neuroinsanity is composed of'.]
My question, therefore, is this: Are all mercury-autism people vicious? The answer:

"I'm interested in the theory of mercury toxicity, whether it's true we're poisoning our children the way we flush poisons into fish and mammals in the sea. But to think of children as those downer cattle, struggling on their legs and unable even to be usefully slaughtered." (Susanne Antonetta, A Mind Apart, page 8, discussing Kathleen Seidel's outrage at autism being called 'mad child disease')

No! Susanne Antonetta is a bipolar woman and an advocate for neurodiversity. The worst she has said is that what she says only applies to high-functioning people, and she later apologised to Amanda Baggs about that (unfortunately, due to Amanda's blog move, her comment was lost). In the above quote, she expresses, at the very least, openness to the theory that mercury poisoning can cause autism. But her view of autism is quite positive, and she clearly is opposed to derogatory references to autism such as calling it 'mad child disease'. (Personally, her reaction to that term much better describes why I find it offensive than Kathleen Seidel's, considering how many people proudly call themselves 'mad' and refer to 'mad pride'.) She does not want to be cured of bipolar, and she agrees with autistics who oppose a cure for autism.

YouTube videos of autism treatment

ABA:
http://www.youtube.com/watch?v=aqIs2eURfF4
http://www.youtube.com/watch?v=5FNIFstq8eA

play therapy/Floortime:
http://www.youtube.com/watch?v=4gmGj8Yn0x4
http://www.youtube.com/watch?v=g6-spzX1mow

animal assisted therapy:
http://www.youtube.com/watch?v=Ff5UhjNWQg4
http://www.youtube.com/watch?v=12nNXFCe-18
http://www.youtube.com/watch?v=Cl8fnHske4E

assistive communication:
http://www.youtube.com/watch?v=s4GAX-IXE_k
http://www.youtube.com/watch?v=TxNR_jePRj8
http://www.youtube.com/watch?v=5AwpWclyjYo
http://www.youtube.com/watch?v=YW6H5_hPqlM
http://www.youtube.com/watch?v=Fw3bLQjapxI
http://www.youtube.com/watch?v=S7ECdtkfROU
http://www.youtube.com/watch?v=ay3nn2Eipm8

occupational therapy/sensory integration therapy:
http://www.youtube.com/watch?v=jbm0Q4HzNhU
http://www.youtube.com/watch?v=5NEROMYo0mw
http://www.youtube.com/watch?v=dB5hsYRlmfA

RDI:
http://www.youtube.com/watch?v=8_DJ_1H7JXE
http://www.youtube.com/watch?v=bF1G6LTFR6Y
http://www.youtube.com/watch?v=F2APopgPjxQ

Don't Hit Them When They're Down

On the Autism Speaks forum, someone posted saying he hated being autistic and wished he'd never been born, and advising parents with a high likelihood of having an autistic child to avoid having children. Another autistic person replied by attacking him and when scolded for that by another person, pointed out how serious the implications were of what the first person had said.
My instinctive reaction, when hearing an autistic person saying they think autism is a bad thing, is 'Oh, no, what will the curebies make of this?' I suspect that was why the other autistic person attacked him for saying that. Statements like that by an autistic person can literally cost people their lives.
A similar problem was described in the book The Courage to Heal regarding ethnic minorities. A Jewish woman and a Latina women both described being afraid to admit that they were sexually abused by their parents because they worried it would feed into negative stereotypes of their people. Muslim women have been discouraged from discussing spousal abuse for the same reason.
But we can't attack the victims, nor can we pretend there's no problems and no diversity of opinion. We can't censor people. I know I feel the temptation sometimes to pretend I have no problems, or that my problems are all unrelated to autism. But doing that leaves my problems unsolved, and feeds into the idea by curebies that 'we don't know what real autism is like'.
I've never connected this with autism, but I've certainly felt like a terrible, worthless person on occasion. I have not found being angrily contradicted and told that I shouldn't say those things helpful. Even worse is people agreeing with me. What works is to reach out to me and tell me that I'm a valuable person and that things won't always be so bad for me. Here's an example of the three ways to reply:

Depressed person: I'm a terrible, worthless person and I wish I'd never been born.
Other person: You're right. You are a terrible, worthless person. Don't worry, we'll find a way to make you worthwhile.

Depressed person: I'm a terrible, worthless person and I wish I'd never been born.
Other person: How dare you say such terrible things! No one is terrible or worthless. (except maybe you, the depressed person hears)

Depressed person: I'm a terrible, worthless person and I wish I'd never been born.
Other person: It's so sad that you feel this way. I am convinced that everyone is valuable, including you. I wish you could see how valuable you truly are.

There is no definite way to help someone like that feel better, but the last choice is the one most likely to work. Note that the last two choices both involve disagreeing with the person, but the last one diagrees by affirming the person's worth, which feels much better than being scolded for expressing yourself. It's important to remember that people who say such things about themselves usually have a long history of being criticized for things they say, do or are. That's why they feel that way. Intellectually, choices 1 and 2 are quite different, but the emotional impact is similar, and someone denigrating themselves is not speaking from intellect, but from emotion.

Not Anti-Treatment

A lot of people seem to think that people opposed to curing autism are against any kind of medical treatment, including seizure medications and vaccinations. For anyone who believes that, look at this blog post:

http://ballastexistenz.autistics.org/?p=419

Kassiane, a severely epileptic autistic woman, lost medical coverage (she lives in US, which has a really screwy health care system) and was running low on the seizure medications that help keep her alive (most seizures aren't life-threatening, but she has had tonic clonic status epilepticus, which is). I couldn't help her out myself, but many autistic activists sent her money to help her purchase her medications.
If we were really against treatment for medical problems, Kassiane would not have received that kind of help from us. We just draw a distinction between life-threatening illnesses and developmental disabilities, and think the two categories should be treated in different ways.

Prednisone in Autistics

The following is an e-mail I sent in reply to this webpage:
"I read your thing about giving prednisone as a treatment for autism. Isn't prednisone a bit dangerous to use on a non-life-threatening condition, even if it is effective? How long do you think it should be used?
http://www.medicinenet.com/prednisone/article.htm
"Side effects of prednisone and other corticosteroids range from mild annoyances to serious, irreversible damage, and they occur more frequently with higher doses and more prolonged treatment. Side effects include retention of sodium (salt) and fluid, weight gain, high blood pressure, loss of potassium, headache and muscle weakness. Prednisone also causes puffiness of the face (moon face), growth of facial hair, thinning and easy bruising of the skin, impaired wound healing, glaucoma, cataracts, ulcers in the stomach and duodenum, worsening of diabetes, irregular menses, rounding of the upper back ("buffalo hump"), obesity, retardation of growth in children, convulsions, and psychiatric disturbances. The psychiatric disturbances include depression, euphoria, insomnia, mood swings, personality changes, and even psychotic behavior.
Prednisone suppresses the immune system and, therefore, increases the frequency or severity of infections and decreases the effectiveness of vaccines and antibiotics. Prednisone may cause osteoporosis that results in fractures of bones. Patients taking long-term prednisone often receive supplements of calcium and vitamin D to counteract the effects on bones. Calcium and vitamin D probably are not enough, however, and treatment with bisphosphonates such as alendronate (Fosamax) and risedronate (Actonel) may be necessary. Calcitonin (Miacalcin) also is effective. The development of osteoporosis and the need for treatment can be monitored using bone density scans.
Prolonged use of prednisone and other corticosteroids causes the adrenal glands to atrophy (shrink) and stop producing the body's natural corticosteroid, cortisol. If prednisone is abruptly withdrawn after prolonged use, the adrenal glands are unable to produce enough cortisol to compensate for the withdrawal, and symptoms of corticosteroid insufficiency (adrenal crisis) may occur. These symptoms include nausea, vomiting and shock. Therefore, prednisone should be discontinued gradually so that the adrenal glands have time to recover and resume production of cortisol. Until the glands fully recover, it may be necessary to treat patients who have recently discontinued corticosteroids with a short course of corticosteroids during times of stress (infection, surgery, etc.), times when corticosteroids are particularly important to the body.
A serious complication of long-term use of corticosteroids is aseptic necrosis of the hip joints. Aseptic necrosis is a condition in which there is death and degeneration of the hip bone. It is a painful condition that ultimately can lead to the need for surgical replacement of the hip. Aseptic necrosis also has been reported in the knee joints. The estimated incidence of aseptic necrosis among long-term users of corticosteroids is 3-4%. Patients taking corticosteroids who develop pain in the hips or knees should report the pain to their doctors promptly."

Even if it was 100% effective, I doubt I'd use it. I have an autistic friend who says only two words (no and yes) and a couple signs, and I think he's probably better off not talking than having those kinds of side effects. And I can communicate with him pretty well without using words. Hisw body language is unusual but certainly communicative, if you get to know him. And he's pretty happy a lot of the time, especially when we go swimming.
Also, a lot of studies have shown that autistics tend to have high cortisol. Wouldn't a steroid make that worse?
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.

Losing Diversity

I've finally decided what my opinion is about dietary treatment for phenylketonuria(PKU).
Phenylketonuria is a recessive genetic condition in which a person lacks the enzyme for digesting phenylaqlanine, a substance present in many foods. If they don't eat much phenylalanine, this condition has no effect, but if they eat phenylalanine during infancy and early childhood, it affects their brain development. Phenylketonurics fed a normal diet until adulthood are moderately-profoundly developmentally delayed and have distinctive behavioral traits including autistic traits. Since babies are screened at birth for PKU and given a low phenylalanine diet, In some regions the youngest people with untreated PKU are in their 40s.
I used to have an obsession with endangered languages. I came across one language, the name of which I can't remember, which used to be spoken by this one group of Australian native people. The last native speaker of this language died sometime before I was born, maybe in the 1960s? All that is left of that language are tapes of that man telling two traditional stories in his language. I wanted to learn that language, but after awhile realized that there wasn't enough known about it for anyone to become fluent in it ever again. That knowledge was gone, and with it, a central part of that culture.
Most people assume that there isw no value in having people who are severely delayed and autistic. I disagree. And each developmental disability brings a unique experience of the world. People with untreated PKU see the world in a unique way, just like people who know a certain culture see the world a certain way. I think of untreated PKU as similar to a moribund language - one which is not being passed down the generations anymore, and will soon be dead. Of course it will not be lost forever. The genes for PKU are still around. But soon no one will have that kind of mind, at least in certain regions. And that makes me sad.
I think about studies I'd like to do in how people with untreated PKU think and feel this sense of urgency, because if I wait too long, they'll be gone. I want to understand those people. I don't want them to just fade into history, the only thing remembered about them being how 'defective' they were.
Now, I'm not saying that no one should give a PKU baby a low phenylalanine diet. What I'd like to see is people making that choice without viewing untreated PKU as a horrible thing, but instead as another way of being. Right now, it probably isn't really a choice. If I had a PKU child and didn't treat them, how long do you think that child would stay in my custody? After all, people have even lost custody of ADHD kids because of not giving them Ritalin.
Ettina