Dan and the Monster Autism

Action for Children has started an ad campaign portraying an autistic kid as being trapped inside a monster, then fighting his way free with their help. I just emailed the following reply:

"I am an autistic 19 year old. I am not a monster, nor am I trapped inside a monster. I'm just a unique person who has been misunderstood and abused by many others.

It's not my fault, or the fault of my autism, that other kids called me names, shoved me, etc. Nor was I bad when I did the only thing I could see to do, and lashed out at the bullies or ran away from school. That was better than when I shut down and lashed out at myself.

It's not my fault, or the fault of my autism, when my teachers insisted that I rearrange my mind to fit their curriculum. When I refused to obey them, hid under tables, or just stood there defiantly until they called my parents, I was advocating for myself. When I thought of myself as stupid, lost interest in things I used to like, and promised myself I wouldn't be 'bad' anymore, that's when I did something wrong, because I was hurting myself.

If no one else will defend your rights, you must defend them yourself. But some kids, like Dan, give in and accept the poisonous blame. They attack themselves, trying to defeat the monster inside. They learn that they're broken, and they must spend 'as long as it takes' to make themselves into worthwhile, valuable human beings. My parents told me that I was always a valuable human being, but many kids don't have parents who do that.

If you claim to be committed to helping children break through injustice, then do that. Don't tell kids they have to defeat the monster that is inside them, tell them they're OK and they must respect themselves. Don't tell them the way they were born, the way they are, is inherently broken, or else you're the injustice they need to break through."

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.

Letter to Tony Attwood About Cassandra Syndrome

Here is a letter I just sent to Tony Attwood:

"I have read that on October 22-23, 2008, you will be speaking at a conference about marital relationships and Asperger Syndrome, including a discussion about 'Cassandra Affective Deprivation Disorder'. The inclusion of NT spouses of AS individuals, but no married AS individuals, on the panel is especially problematic.
I hope you will make it clear that marital problems are not solely the fault of one person simply because they have a neurodevelopmental disability, and that intolerance, failure to understand and failure to accomodate differences on the part of the neurotypical spouse is a big source of problems as well.
Except in cases of spousal abuse, marital problems are always the 'fault' of both partners. Asperger Syndrome causes social differences and other differences, but unless the AS partner has co-morbid abusive tendencies (which are probably equally common in AS and NT people), the AS diagnosis does not mean they are at fault for the marriage breakdown. There are many AS/AS marriages which do just as well as NT/NT marriages. The problems that AS/NT marriages can have (which are not universal or insurmountable) are that the two partners have a very different way of relating. This is no more the fault of one partner as opposed to the other than a communication breakdown between two monolingual people who speak different languages. They simply do not understand each other.
Due to negative experiences, AS partners may be more likely to be very sensitive to criticism and have low self-esteem, but NT partners are more likely to be prejudiced against their partner's cognitive style and be less able to compensate for neurological differences (AS individuals have a lifetime of practice).
For an NT/AS marriage to work, both partners must work to understand and accept each other, as well as ask assertively for what they need in the relationship. Blaming relationship problems solely on one partner, as the Cassandra Syndrome concept does, will not help that. Very often, the AS person is already exerting much more effort to accomodate their NT partner than vice versa."

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.

Whose Side Are They On?

According to many parents of autistic kids, at least those who know the history of autism, psychoanalysts were 'the bad guys'. Many also hail early behaviorists as heroes. Certainly, they were much kinder to parents. Bruno Bettelheim, in his book The Empty Fortress, said that the difference between Nazi prison guards and mothers of autistic kids was that the mothers got at the children from a younger age (Bruno Bettelheim was a concentration camp survivor, and appears to have drawn extensively from that in his work). In contrast, in an interview I found with O. Ivar Lovaas, he said: 

"I can tell you that the parents that we work with are very nice people. We get to know the parents as people, and when you do that you find that there is no reason to believe that they produce autism. But a lot of parents still think that it must be their fault somehow. They have heard that the parents of autistic children do not express love adequately, so they bend over backwards to be loving. What they get for their trouble is even more bizarre behavior � the child smears his feces on the walls, bites his parents, and has violent tantrums. The parents are afraid to punish them for these acts because they have been told that the child behaves this way because he feels unloved, so if you punish him you are only making him worse. But this is all nonsense. And this theory has made a lot of parents feel terribly guilty and made the autistic child get worse instead of better." 

It's obvious which attitude parents would prefer. But if I was an autistic child in the 1970s, I'd much rather receive psychoanalysis than ABA, even though it would be worse on my parents (though admittedly not all psychoanalysts were quite as bad as Bruno Bettelheim). Here's why: 

"You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense - they have hair, a nose and a mouth - but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person." 

(Ivar Lovaas, in the above-mentioned interview)

In contrast, psychoanalysts typically viewed the autistic child as a person and assumed their behavior was meaningful and important in some way. Behaviorists consider behavior meaningful, but in a very limited and simplistic sense of receiving a reward of some kind, and they don't question whether abnormal behavior should be reduced. Psychoanalysts ideally hoped their patients would become normal, but they were careful not to remove important methods of self-expression unless the person had better ways of expressing themselves (and even then, they were careful about it). In general, the treatment was much kinder. Psychoanalysts worked on building connection and understanding the patient. With higher functioning, adult patients, this was generally sitting or lying comfortably while saying whatever came to mind - 'free association' - but with children, especially if they had limited verbal skills, it was basically play therapy. The book Dibs: In Search of Self is a good illustration of this with a boy who probably was autistic (they call him emotionally disturbed). Here's Lovaas describing how he treated autistic kids: 

"Spank them, and spank them good. They bite you and you just turn them over your knee and give them one good whack on the rear and that pretty well does it. This is what we do best; we are very good at controlling these kinds of behaviors. This is also the way we handle self-destructive behavior." 

"One day I was talking with her teacher and Beth began hitting her head against the edge of a steel cabinet. She would only hit steel cabinets and she would only hit them on the edge because, you see, she wanted to draw blood. Well, I think because I knew her so well, I just reacted automatically, the way I would have with one of my own children. I just reached over and cracked her one right on the rear. She was a big fat girl so I had an easy target. And I remember her reaction: She turned around and looked at me as if to say, "What the hell is going on? Is this a psychiatric clinic or isn't it?" And she stopped hitting herself for about 30 seconds and then, you see, she sized up the situation, laid out her strategy and then she hit herself once more. But in those 30 seconds while she was laying out her strategy, Professor Lovaas was laying out his. At first I thought, "God, what have I done," but then I noticed that she had stopped hitting herself. I felt guilty, but I felt great. Then she hit herself again and I really laid it on her. You see, by then I knew that she could inhibit it, and that she would inhibit it if she knew I would hit her. So I let her know that there was no question in my mind that I was going to kill her if she hit herself once more, and that was pretty much it. She hit herself a few times after that, but we had the problem licked." 

"We stay close to them and when they hurt themselves we scream "no" as loud as we can and we look furious and at the same time we shock them. What typically happens is this - we shock the child once and he stops for about 30 seconds and then he tries it again. It is as though he says, "I have to replicate this to be sure." Like a scientist. He tries it once more and we punish again and that is pretty much it. So we can cure self-destructive behavior - even long-standing, self-destructive behavior - in a matter of minutes." 

"How do you avoid having the child become afraid of you? Lovaas: That is a good question. No one punishes who isn't prepared to devote a major part of his life to that child. Nobody punishes a child who doesn't also love that child. As soon as you suppress self-mutilation you start building appropriate behaviors. You reward the child for doing other things instead of hurting himself." (It actually won't work - I lived with someone who was sometimes nice and sometimes mean and I was plenty scared of him.) 

Which would you prefer - someone playing with you and getting you to express how you feel, or someone hitting you, yelling 'No!' right in your face and zapping you with an electric shock device? Which would you prefer - being viewed as a person who is hurt and coping the only way they can, or as a physical person who is not a person 'in the psychological sense'? Psychoanalysis certainly had its problems, but it was by far better for autistic children than ABA.

Why I'm Not Offended

Recently, I found a book in the library called Changeling, by Delia Sherman. It's at the perspective of Neef, a child stolen by fairies at a young age. I'm not going to reveal too much of the plot, but she ends up meeting the fairy created to replace her, who she nicknames Changeling. Changeling has meltdowns, hates changes in plan, is very literal and rule-bound, hates to be touched, is great with computers, has an excellent memory and has received assistance in social skills from a psychologist.
I looked up the entry for that book on Amazon.com (see above) and read the comments. Many people guessed, probably rightly so, that Changeling's personality is modeled after autistic people. Apparently in the acknowledgements Delia Sherman thanked someone for teaching her about Asperger Syndrome (I rarely read the acknowledgements). It's very likely, therefore, that Changeling was intended to be autistic or autistic-like.
One person on Amazon.com commented:

"I did have a bit of a problem with the book equating Asperger's Syndrome with Changlings. It seemed a risky correlation for Ms. Sherman to make. She's never blatant about it, of course, but a quick examination of Changeling's personality (she says that when she was younger she needed a therapist to help her develop social skills) coupled with the note in the book's Acknowledgment section that reads that someone, "gave me an invaluable education on Asperger's Syndrome", was enough to put my hair on end. We don't really want to equate Asperger's with someone being physically from another world, do we?"

This made me think. Why am I not offended by this comparison, when I'm offended by many other similar portrayals of autistic people?
The reason is the way Delia Sherman portrays Changeling. Changeling is portrayed pretty well. My biggest criticism was that she could've had more self-determination, and portrayed Changeling as being more able to speak for herself and having more ability to make effective choices, though partly it could just be that Neef was more used to the environment they were in than Changeling was. But Changeling's unique qualities turn out to be essential to their success and probably their survival, and Neef and Changeling become good friends.
My favorite part is a section (don't have the book so I can't quote it) in which someone tells Neef that people like Changeling are useless. Their sole purpose is to replace humans stolen away, so the humans don't notice. Fairy folk don't want them because they have little magic, and even the humans don't really like them - they used to abuse or kill them, and now they try to force them to conform. Neef indignantly stands up for Changeling, asserting that she is valuable.
I think this book is one of those admirable books that take a harmful tradition (in this case the portrayal of disabled children as a 'stolen' normal child replaced by an 'empty shell' or as Martin Luther stated, a soulless 'massa carnis') and twists it around to make it positive. And the biggest test is 'how is this likely to affect how autistics are treated?' I think it's likely to be a pretty positive effect, if anything.

Madness or Early Death

[Warning: plot spoiler. I can't think of any way to get my point across without giving away the ending of this book.]
I recently got a book called Magic or Madness by Justine Larbalestier. In this story, a girl, Reason Cansino, was living with her mother Sarafina. They were constantly on the run from Sarafina's mother Esmerelda, who according to Sarafina tortured and killed animals and babies in order to do nonexistant magic. Then, when Sarafina has a mental breakdown, Reason is sent to live with her grandmother.
In the course of the book, Reason discovers that magic is real, and that she has magic. If she doesn't use her magic, she will eventually go crazy like her mother and her friend Tom's mother. However, the more magic she uses, the shorter her life expectancy. On a monument to her family, the women listed died at 18, 20, 21, 14, 5, 19, 20, 25, 12, 16, 27, 20 and 48 years old.
The 'madness' that comes from not doing magic in this stories sounds somewhat like schizophrenia. Both Sarafina and Tom's mother tried to hurt themselves and/or others in the episodes that resulted in hospitalization. Tom describes his mother's episode as such:

"'Did she hurt you badly?' asked Reason. 'When she tried to kill you?' She looked concerned, which made Tom squirm. He didn't much enjoy people feeling sorry for him.
'No, Dad got there first. She was waving a knife around saying that she'd kill us. She cut Cathy [his sister], but Dad reckons it was an accident. Cath's got a scar on her shoulder, it's tiny, but.'"

Earlier, he says about her:

"She kept trying to kill herself. Then one time when I was little, she tried to kill me and Cathy too. So she's in Kalder Park now... Mum would never take her meds, ... She thinks they put devils in her head."

Sarafina, too, had had multiple episodes before being hospitalized:

"Sarafina talked to people who weren't there. She insisted we walk in straight lines, for days at a time. Sometimes she got confused, wasn't sure where or who she was. Then I would lead her back to the hotel room or caravan or campsite - wherever it was we were staying - and explain where we were and why and give Sarafina a mathematical or logical problem to solve. She always could. Solving the problem would bring her back. Her episodes never lasted long, and until Dubbo she'd never been scary mad."

In the hospital when Reason visited, Sarafina kept on talking about her mother and acting as if she couldn't hear Reason's replies unless they fit what she wanted to discuss. She didn't give sufficient context for Reason to understand her, so that when she gave Reason directions to find a dead cat hidden in Esmerelda's cellar, Reason thought she was discussing a person. Then Sarafina said "It's not too bad, ... Being insane. It's not too bad at all. There are worse things. It's pretty here."
After thinking about this book, I wondered why anyone would use magic at all. Though clearly the mental illness that results from not using magic is unpleasant, it's clearly better than dying in your teens or twenties. Even the length of time before Sarafina had her breakdown was longer than that, so if you treated mental illness as equivalent to death Sarafina was likely still better off. And as she states, mental illness is not constant unending suffering. She clearly felt it was better than death.
The only way they could justify choosing magic and early death over mental illness is if they view being mentally ill as worse than death. This is an attitude which is not only wrong but very dangerous, because a logical conclusion of the 'better dead than disabled' view is that killing disabled people does them a favour.

Autism and Cancer video now readable

I posted this on Youtube awhile ago, but wasn't expecting Youtube to blur the video and make it unreadable. This one has larger print, so it should be readable now. If you still have difficulty, here's a transcript:


"Autism is no more a 'culture' to be preserved and protected than lung cancer or a brain tumor."
Gary Mayerson
In his article Mischaracterizing the 'Misbehaviour of Behaviorists'
Schafer Autism Report Special Edition: In Defense of Behavioral Treatment for Autism

"Just substitute the word 'cancer' for 'autism' and any 'lay person' could detect a slightly subversive note:
Are there ethical issues associated with recovery from cancer?
What are the economic implications of wide-scale attempts to recover people from cancer?
It seems to me that these questions amount to little more than a call for ammunition against the rising demand for science-based, effective treatment, which at this moment in time happens to be anchored in the field of applied behavioral analysis. Yes, aiming for and achieving recovery from autism is expensive. So is chemotherapy. So is a lifetime of state-supported custodial care. Why would we not attempt to recover anyone from cancer, or autism? No, we cannot guarantee cure or recovery for anyone, but is that any reason to lower the bar? Do we start deciding how many people should have access to science-based treatments for cancer? Do we start deciding how many children should have access to ABA?"
Catherine Maurice
Recovery: Debate Diminishes Opportunities
Association for Science in Autism Treatment - http://www.asatonline.org/

"Autism is worse than cancer in many ways, because the person with autism has a normal lifespan. The problem is with you seven days a week, 24 hours a day, for the rest of your life. My wife and I expect to have responsibility for Adam until we die. We lose sleep over what will become of him after we are deceased. Our financial resources are depleted, so our ability to provide for him is limited."
David
Standing Senate Committee on Social Affairs, Science and Technology, regarding the state of the health care system in Canada

"If my son had cancer instead of Autism, I would move heaven and earth to get him chemotherapy. Why? Because that is the best treatment so far. I also heard that tomato juice is good in fighting cancer and much cheaper. Should I then reason out somehow that because someone said it worked for them I should forget the chemo and just use tomato juice? Can you see how bizarre that sounds? Perhaps I'll use chemo and tomato juice, just make sure the tomato juice you are using is proven safe (chelation therapy?) and don't stop the chemo."

I am autistic. I also have a family history of cancer.

My maternal grandmother died of ovarian cancer, which she developed in her 40s. My maternal aunt recently developed breast cancer, also in her 40s. Most women with breast/ovarian cancer are postmenopausal - they weren't.

Because two women in my family got breast/ovarian cancer unusually early, doctors are concerned that they might have a BRCA mutation, resulting in a genetic predisposition to certain types of cancer. If my grandmother had one of these mutations, my mother would have a 50% chance of having the same mutation, and I would have a 25% chance (0% if my mother didn't have it and 50% if she did).

There are two BRCA genes - BRCA1 and BRCA2. Of families with several high-risk indicators, (ovarian & breast cancer, onset before menopause, bilateral breast cancer and/or male breast cancer), 52% had a BRCA1 mutation and 32% had a BRCA2 mutation (the others may have other genetic susceptibility).

[I will work more on finishing the transcribing later, but I'll just post this incomplete so people can see the video sooner.]

New Video on YouTube

I just posted a new video to YouTube.



Sorry about the poor quality. I'll see if I can edit it later on - try to increase text size and volume.

Discrimination and Fear of the Unknown

I've often heard people say that discrimination is 'fear of the unknown' and if you educate people about a group and get them to get to know people from that group, they won't be discriminatory.
Recently, my father told me about people working for the Hudson's Bay Company who lived among Native people, married a Native woman and had children, and then when the opportunity came, they just left them to go back to Europe. Now, Native people certainly weren't 'unknown' to these people, but still, they were discriminatory against them to a rather extreme degree.
And what about slave owners? They certainly weren't unfamiliar with black people, yet few nowadays would disagree that they were discriminatory against them. In fact, it was in noerthern US and Canada, where there were much fewer black people, that they were less discriminated against (though they still were).
I think what kind of relationship they have is far more important than how much contact they have. It's a bit like stray animals - they say a cat who was born feral is easier to tame than one who was abandoned, because one cat has little knowledge of humans while the other knows from experience that humans can be nasty. If your interactions with a certain group are with you in a position where you're encouraged to think you are superior, you will tend to learn to be discriminatory against them.
Also, once you've learnt discrimination, it's hard to unlearn. You can interpret almost anything as a sign they are inferior. They treated Native customs as 'primitive'. If you value mass production and industrialization, the Native cultures would seem primitive. But that is by a rigid definition of what is good and bad.
Now, with having said that, is it any wonder that mainstreaming hasn't been a magic solution to discrimination against disabled kids? Their classmates are taught to value conformity, and they see one kid who is different. Often they see adults acting particularly patronizing and 'helpful' to that kid, more so than the others. They may even be explicitly taught to patronize and 'help' the disabled kid - see Hell Bent on Helping. So they bully the kid, exclude them, or patronizingly 'help' them. All three are discriminatory ways of behaving.
Not to say that a person who knows absolutely nothing about a group can't be discriminatory, of course.
Ettina

After the First One

People tend to talk a lot about the first person to do something. First person to walk on the moon, for example. Rights movements also have their firsts, the people who first break through an absolute barrier. First woman doctor, first black politician in US, etc.
My question is, after the first one, what do we do next? How do we get from that point to the one where it's nothing strange, where we have plenty of women doctors, or black politicians, or whatever. Even now, when women doctors are nothing particularly odd, there's still inequality, with the glass ceiling and less women than men choosing to be doctors in the first place.
Tamora Pierce is a fiction writer. She has written several books set in a land called Tortall. The first series was Songs of the Lioness. The star of that story, Alanna, disguises as a boy to become a knight. After she gains her shield, her gender is revealed, and the king declares that girls are now permitted to become knights.
Then she has a series called Protector of the Small, about a girl named Keladry, the second girl in Tortall to become a knight. Alanna pushed open the door for lady knights, but it's not completely open. She is an oddity and treated badly by many of the other knights-in-training and the ones who teach them. I really like this series because it shows that it is better, but still not perfect, compared to when Alanna became a knight.
The absolute barrier of 'no X allowed' is easy to see. It's easy to know what to fight. But what about the barrier where things are just simply harder for X people, not due to inherent lack of ability but the effects of discrimination. How do we fight the problem of girls learning that science isn't a 'girl thing' and therefore not seeking careers in science? How do we fight the problem of organizations hiring 'tokens' of various groups so they can point to them and say 'see? we're inclusive!' without really changing anything? I don't really know the answer.