Friday, March 28, 2008

Social Identity

The next Disability Blog Carnival theme is 'The Hardest Part'. I was thinking about it, and decided I didn't want to interpret 'hard' as 'difficult', because that's standard. I wanted to do something different.
Bill Choisser has an online book about prosopagnosia here. I found it among my printouts yesterday and was reading it again, and noticed how he describes identity. One aspect he discusses is 'core identity' - cores are generally hard, so that's the connection. Pretty tangential, I know. I like being tangential.
I have a regular pattern of treating whatever I'm reading as if it doesn't relate at all to myself. In fact, I don't tend to have a sense of 'myself' while reading. But when I reread things, sometimes I suddenly start thinking about how they relate to me.
Anyway, I started wondering what my own identity would look like with that model. I'm female, so my personal identity (what you actually are) would be female. I consider myself female, as opposed to being transsexual or genderqueer or something, so my core identity would also be female. But maybe close to the border, because being female is not as significant to my identity as it seems to be for most. My personal identity is in my core identity, because I'm fine with who I am, but maybe towards the border rather than squarely in. Actually, my core identity is probably very small, only slightly bigger than my personal identity, because I consider myself very unique.
Type is acceptable mating partners. Therefore, my 'type' is nonexistant, because I have no interest in sex with anyone. As for my tribe, it's several parts. One is 'developmentally disabled people', another is 'highly-educated intellectuals'. Or no, on reviewing the definition, it's probably only developmentally disabled people, and my immediate family. It crosses both genders. My personal identity is towards the edge of my tribe, and my core identity is half in and half out, because I don't fully feel a part of any group.
My core identity is certainly hard. It's hardened and solidified to stand the assaults my teachers gave to it, as they tried to force it to move. It's the hardest part in this diagram, the part most resistent to change (except maybe personal identity). I mentioned above that my core identity is small, that's because it curled up for protection. It's strong because it had to be.
And another meaning of hard - this was difficult for me, to figure out where these things are positioned. The hardest part to figure out was probably my tribe. I don't have much of a clear idea what that even means.

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Wednesday, March 26, 2008

Mommy, There's a Black Person!

This is a message I just sent to the Polskie Radio:

"Hi, I'm writing in from Canada. Last night, I was listening to Radio Poland on the overnight thing, where CBC presents news from other countries. I don't know Polish, so hopefully the people doing the English section will read this.
I'm writing about a story where one news person was discussing offensive ads. The first one she described, showing young women bungling various 'male' occupations, was clearly sexist.
The second one, however, was about a child saying 'look, mommy, there's a black person'. When she described that, I thought OK, now she'll get to the offensive bit. But apparently that was the part she found offensive - the child pointing out a black person.
I haven't seen the ad, but from what I've heard, it doesn't seem offensive at all. Noticing and commenting on differences in skin color is no more offensive than noticing and commenting on differences in hair color (which the news person did when discussing the first ad). The problem is making a value judgment about skin color, not merely noticing it.
I see no problem in calling myself white. I have several black friends, and I call them black and myself white in their presence without offending them. I have a good friend who is an immigrant from Zambia and she and I talk about race as freely as anything else.
In fact, ignoring race is frequently racist, because very often people will assume the person is white unless they know otherwise. Particularly on radio and other communication where you can't see the person described, this erases black people and other groups. Also, ignoring racial differences usually means ignoring cultural differences too, and expecting people to be like you when they really aren't is prejudiced too."

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Monday, March 24, 2008

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.

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Tuesday, March 18, 2008

email to schizophrenia digest

I recently e-mailed the following to the schizophrenia digest 'Ask the Doctor' column:

To Dr Bob,
Awhile back I read the book I’m Not Sick, I Don’t Need Help! My question is how to distinguish lack of insight into their own condition from simply disagreeing with their psychiatrist. For example, as an autistic person, I have often heard accounts of adult autistic people being misdiagnosed as schizophrenic and given inappropriate treatment as a result. Many of these people are aware that the diagnosis doesn’t fit and the treatment isn’t helping. Even when accurately diagnosed, some psychiatric patients may not be helped by the usual treatment, may feel that the drawbacks of the treatment outweigh the benefit, or may have different goals for treatment than the psychiatrist. How do you decide who is right when the patient and the psychiatrist disagree?

I'd really like to know his answer, but even more so I want to raise the question.

PS: I just added links to my favorite blogs. Note that there's actually a curebie autistic among them - I don't agree with many of her statements, but she's very interesting to read and discuss with.

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New Breakthrough in Counseling

I had a counseling session yesterday. I told my counselor that I'd had a meltdown and a bit about it, but I really didn't want to talk about it, so I started spacing out and said 'my vision's going strange'. She asked me what I meant and I explained that it was all fuzzing over except what I was looking at, which became very clear (it was a basket underneath a chair). I told her that tended to happen when I was upset. Then I said that I felt like I was being pressured to talk about my meltdown even though I didn't want to. This is the first time I've been able to say no to this sort of thing, to say that I don't feel comfortable discussing my bad behavior with a relative stranger. Before, I always just pushed that discomfort down because 'you're supposed to tell your counselor things like this' and also because I'd learnt that not talking about bad things was dangerous.
Then we discussed how I felt counseling wasn't really helping me very much, and how I felt it was too verbal. She suggested writing nice things about myself on rocks so I could handle them when I was upset. I said I wasn't sure that would help, then got the idea to get my younger brother (who was in the waiting room because he'd decided to accompany me) to write stuff on the rocks. He happily did that (partly because he was bored in the waiting room). So then I had a collection of rocks with things like 'nice' and 'good freind' (that's how he spelt it) and 'observant' written on them.
Later that evening, at home, I got into an argument with my brother and had a slight meltdown because I felt like he didn't care about me. My mother coaxed him off to have a bath and meanwhile my father gave me a container for my rocks because the bag I'd been given for them had broken. I started rubbing each one to warm it and then putting it in the container.
The first few I put in, but I found a couple I disagreed with and set them aside, thinking I might do something with them later. A few rocks later, I decided to put the ones I thought weren't wrong in the container, and with the others, work on convincing myself until I felt I could put them in the container.
Mostly, they were all things like 'nice', 'kind', etc, except for 'truthful'. Anyway, I asked my father to tell me ways I fit those when I couldn't think of any myself. By the time I'd gotten them all in, I felt much calmer. (Then I stood up and one I'd overlooked, 'careful', fell off my lap. That was funny.)
Anyway, the big breakthrough was that I found a way of dealing with my feeling of not being cared about in a way that fits my mind, though it may not be standard therapy. I also broke another rule I had that wasn't good for me.

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Monday, March 17, 2008

What Was She Thinking?

Many people lately have been talking about Hannah Poling, an autistic girl with a mitochondrial disorder whose parents have received compensation because she regressed after vaccination at 19 months. I was thinking of blogging about how mitochondrial disorders are extremely rare, how the vaccinations she received were much better than getting one of the illnesses they were intended to prevent, and how simple measures such as reducing fever, ensuring that the child eats plenty even when sick, and spacing out vaccines (she got 9 at the same time) could prevent other children with mitochondrial disorders reacting badly to vaccines.
But after watching the videos, I've thought of something else. I watched this 9 year old girl sitting there, between her parents, as they talked about the vaccines she got and how they affected her. I heard her parent describe all the ABA treatment she got. I saw the pained look on her mother's face, the 'protective mother of a hurt child' body language she gave out. I saw a girl who seemed a lot like me and many children I know. I saw a girl who talked with her mother about the picture she was drawing, was bothered by some kind of microphone or something that she was wearing on CNN, and had movement quirks typical of autistics, more prominent but similar to my own movement quirks.
My big question is: What was she thinking? How did she feel? What was it like for her, to hear her parents describe her 'descent' into autism, to be a silent observer to her parents complaining about her behavior and expressing their pain?
And then I think about the broader context. She received ABA, so I think about her sitting at the table, putting up with (or protesting) someone giving her an unending series of commands. She lives with these parents every day, so I think about what that means. She probably hears them explain her problems to doctors and teachers and maybe even strangers. And how do they react when she acts strange? If she expresses an unusual desire, like the boy who wanted to dress up as a lamppost for Halloween? They're clearly quite loving, especially her mother, but they've spoken publicly about her being damaged, with a lot of pain evident. Do they express this in their everyday lives, or are they more like the mother of an autistic boy who told my father 'this is as good as it gets' and apologised for him not being a typical birthday guest, but was really only putting up a defense because she didn't realise we were so accepting?
So, my blog entry, rather than being a bunch of facts, is really more a bunch of questions, about the person most centrally involved in this case, but whose viewpoint has been considered the least. What is it like to be Hannah Poling? What was she thinking while CNN videotaped her?

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Wednesday, March 12, 2008

Acting Your Age

I thought I'd posted something about this ages ago, but it seems like I only thought about posting it.
A lot of developmentally disabled people are treated like they aren't really whatever age they are, instead, they're younger. Other disabled people are treated this way sometimes, but it's much more overt when used on developmentally disabled people. Sometimes, especially when the age they supposedly are 'mentally' is extremely young and they're adolescent or older, there is a strong feeling of revulsion associated, as if anyone who acts like a baby without really being a baby is disgusting.
A big part of it, that I see, is the idea that there's only one way to act your age, and that's by acting normal. Even with ages that are often negatively stereotyped, such as adolescence, it is often seen as sad if someone is acting more 'childlike' than like an NT teenager.
But they are their own age. They just don't have the typical way of behaving at that age. Many Down Syndrome kids around 5-8 years or so, for example, have a certain common way of looking and acting, so that it's fairly easy to recognize a DS kid that age as opposed to a different age. Not all DS kids are that way, but most DS kids in that age range that I've met do. But the way 5-8 year old DS kids are is different from 5-8 year old NT kids. They tend to be more playful, more sociable, more adult-oriented, speak less well, are smaller and are less independent. Some of these differences somewhat resemble younger NT kids, maybe around 2-4 years old. But they aren't really like 2-4 year old NT kids, but like 5-8 year old DS kids.

Edit: I uploaded an edit of my changeling lullaby video here:

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Tuesday, March 11, 2008

Abuse is the Norm?

I recently came across a report on Violence Against Disabled Children prepared by UNICEF, and was shocked to hear them say that 90% of developmentally disabled people in one study had been sexually abused, and 80% of deaf people in another study.
I was not able to find the studies they got those rates from, but I found some other relevant studies. In the Journal of the American Academy for Child and Adolescent Psychiatry volume 333(4) pages 567-576, they studied developmentally disabled kids in a psychiatric hospital and found that 61% had been abused. In the Journal of Rehabilitation volume 68(1) pages 4-13, they studied disabled women (mostly physically disabled) and found that 67% had been physically abused and 53% sexually abused. In Augmentative and Alternative Communication volume 19(2) pages 125-134, 45% of AAC users reported having been the victim of a crime or abuse. In Sexuality and Disability volume 12(4) pages 297-306, they found that 27% of mildly developmentally delayed adults had been raped, as opposed to 4% of psychology students. They also found that most of the disabled study participants didn't know what incest and rape meant (the words were later defined before asking if they'd experienced it), didn't know what to do if they experienced unwanted touch or were sexually abused (the 'correct' answer was to 'respond assertively' or 'tell someone') and that 27% thought they couldn't say no to sex and 36% said someone else should decide for them whether they have sex or not.
With many of these studies, abuse survivors are actually the majority of disabled people. And in most cases, this is those who say they were abused when asked as part of the study. How many more who were unwilling to talk about it or didn't realize they'd been abused (for example, thinking what was done to them is normal)?
It's shocking. Think of this: it is more unusual for disabled people not to have been abused. I always assumed that having been sexually abused made me a minority, both in the general population and among autistic people. Though none of the above studies gave information on the rates of abuse among autistics, most likely the rates are fairly similar to other developmentally disabled people.
These studies suggest a much needed shift in perspective. You can't just assume they weren't abused until you find out they were. In fact, it may be safer to assume that they were abused, by someone, until you find out they were not.
I figured emotional abuse would be extremely high, near-universal, but these studies didn't look at emotional abuse. They looked at physical and sexual abuse and occasionally neglect. Even those more overt forms of abuse are extremely common among disabled people.

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Monday, March 10, 2008

The Moorchild

When I posted an entry about Delia Sherman's book Changeling, someone commented about the book Moorchild by Eloise McGraw. I now have that book. I have a few concerns about it.
Firstly, as in so many other books, the 'happy ending' consists of the parents getting their own child back. In Selma Lagerlof's story, the troll baby goes back to his mother. In Moorchild, Saaski/Moql ends up wandering with Tam, the orphan boy she befriends. Though both are treated with kindness by their human mothers, their mothers clearly would rather have a proper human child.
The only one who shows any sign of preferring the changeling to their own child is Yanno, who is sad that Lekka/Saaski (the stolen child) is terrified of bees, while Saaski/Moql helped him with his beekeeping. In Delia Sherman's book, instead, both Neef (the stolen child) and Changeling go back to their adoptive families in the end. That's the happy ending. Changeling clearly belongs with the humans, despite being a fairy in the form of a human, and Neef wouldn't want to go back there - it's not her home anymore. You never meet Changeling's parents, so you don't know what they want, but they've clearly been decent parents to Changeling, and she loves them.
Another problem, and this is present in both Changeling and Moorchild, is that the children fit in too well. They're only odd. In all the stories of changelings older than infant, if they described the child's abilities, they usually couldn't talk (except when tricked into revealing their true age) and some couldn't walk. They were all severely disabled, 'useless eaters'. But both Changeling and Saaski/Moql are strange rather than obviously disabled. Though Changeling clearly was considered disabled, she's in the category of children who have only recently been considered disabled, not those who were always viewed that way.
Saaski/Moql also should have been more disabled among the fairies, most likely. Apart from being unable to shapeshift or disappear, she seems to have normal abilities for a Folk child. She fits in among them even more than among the humans, until they reject her for what seems not to be much of a reason (after all, she could easily have been accomodated, especially since she was perfectly capable of making herself look the color of moss as she hugged a tree and could have hidden that way and gone out only at night when the risk of capture is less). She is more agile than most humans, but again, she's no less agile than most Folk.
A last comment about the stupid teacherly 'Alladin Reading Group Guide' questions at the end of the book. At one point, they state:

"The Moorchild is dedicated to 'all children who have ever felt different.' Is this another way of saying that the book is dedicated to all children? Do you think every child - or adult - has felt different at some point in their lives?"

I hate this kind of normalization of the experience of being different. Maybe many kids feel different on some occasion, but very few kids, like Saaski/Moql and myself, have felt different virtually every time they're with a group of children. It's totally different from occasional concerns about not fitting in. Instead, you know that you never fit in, you never belong, or at least so rarely it feels like never. It becomes a part of how you see yourself - not within any group but always an outsider. It's like the difference psychologists draw between state and trait. State anxiety means you are simply anxious at the time. Trait anxious means you're an anxious person. Though you may not always be anxious, you are anxious much of your time. Similarly, the feeling of not belonging can be a state or a trait, and it's very different when it's a trait than when it's merely a state.

PS: Here's my favorite write-up of the changeling myth.

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Saturday, March 08, 2008

Nearest book

David Hingsburger was tagged for something awhile back. You take the nearest book, go to page 123, and type up three sentences. I'm not sure, from the instructions, if the sentences are meant to be sentences 5, 6 and 7 or 6, 7 and 8. Anyway, he said people could tag themselves if they wished, rather than him tagging people. So I've tagged myself.
Nearest book is the abc of CHILD CARE, by Allan Fromme, Ph.D. It was first published in 1960, but my copy is the 4th edition, published in 1975. Since I'm not sure which 3 sentences to quote, as described above, I'll quote 4 instead.

"b. If we are fortunate enough to have our own outdoor play area for our child, it is worth equipping it in such a way as to attract other children. Although this may sound extravagant, it is economical in the long run to have a sand box big enough for several children, with enough sand toys for all. One outdoor swing is never as effective as two or three. A place to play, indoors or out, where children are not constantly nagged about the mess or noise they are making is in itself attractive enough for children to want to return to of their own accord." (In a list of suggestions on improving your child's friendships.)

Now, that's not one of the really interesting parts of the book, so I'll quote a few of the more interesting (accurate or not) parts:

"There is no such thing as an aggressive child who also feels loved. Children who are habitually and openly overaggressive are the very ones who baffle their parents the most by their extravagant if infrequent demonstrations of thoughfulness, love, affection, and begging for forgiveness. ... Superficially, of course, we assume that we all love our children and that therefore none of them should be aggressive. No doubt we do love them, but it is equally true that we don't always put it in evidence sufficiently clearly for our children to feel our love. A child, for example, doesn't see our love when we scrub the dirt off from behind his ears. It is equally true, too, that in addition to the love we have for our children, we frequently feel annoyed, irritated, offended, impatient, and even desperate about them. Without realizing it, we sometimes express these feelings very much more dramatically and clearly than we do the more tender sentiments of love."

There are aggressive kids who act that way for reasons other than feeling unloved. Although many of those kids end up feeling unloved, it's simply because many people don't act loving towards an aggressive child, rather than because feeling unloved makes them aggressive. Apart from that, this statement is very true. Many aggressive kids act that way because they feel unloved, and being loved doesn't necessarily equal feeling loved. With autistic kids, especially, they are more frequently corrected and redirected. They also hear parents describing them as having a problem that may have stolen their child, be trapping their child, be an enemy that must be fought, or other forms of nasty imagery about autism. Those statements might be less harmful if the child's perception matched them - for example, if they really did feel trapped - but most autistic children don't naturally feel trapped by their own brain style. (Some feel trapped by movement difficulties, but even that need not be seen that way.) The child often wonders 'if you knew this was who I really am, would you hate me?' and feel your expression of love isn't real.

"The child can be spared considerable confusion, in many instances, if the divorce is as complete for him as it is for his parents. His father's visits almost always lead to additional rejection when they are eventually discontinued. The younger a child is at the time of divorce, the easier it is for the man to divorce himself from his child also. Although this may not be easy, in any case, and is not supported by the law, it is merely a recommendation worth considering. The child should be adequately prepared for his father's departure in either event."

"Most important of all, replace your child's father as quickly as possible by remarriage. Don't try to be a mother and a father to your child. You can't do it. You'll remain a mother, make your child excessively dependent on you, and confuse the masculine and feminine roles in life for him. The longer you put off remarriage, the more difficult it becomes for you and the less easily do children accept the idea. Remarry - it's the best thing you can do for yourself and your children."

"In the case of the death of a child's mother or father, the recommendations above still pertain. However, the most important thing one can do is to supply a substitute as soon as possible. A child's daily physical care is the paramount issue. No woman can be father and mother to a child alone, nor can any man expect to perform the functions of mother and father himself. The greater problem, of course, is the death of the mother. Ideally, some immediate substitution should be made. A maid or grandmother are good temporary solutions. Remarriage is the best permanent one."

All of this advice is precisely the opposite of what is really best for the child. Absentee fathers are a big problem, and this should not be encouraged unless the father is abusive. Regarding remarriage: a) single parenting is not a big problem, provided they have (and use) a good support system, b) you can't be choosy if you're in a hurry to get married, especially since many people don't want to be stepparents, and therefore are more likely to make a poor choice, and c) children need time to adjust and grieve (especially in the case of death rather than divorce) and even after many years may be unable to accept a 'substitute' (in fact stepparents must never be portrayed as a substitute, because they are not the same person as the child's parent). The only children to whom this advice wouldn't necessarily be damaging are children under 2, who will be fine as long as they have good parenting (however, making a poor choice in spouse or having unresolved grief can adversely affect them long term).
The other advice they have for children in case of death is also damaging, because it encourages the parents to minimise it and ignore or suppress the child's grief, in the idea that children grieve not because of their own loss but rather modeling from parents, and that grieving is unhealthy for children.

"Under no circumstances is spanking your child the best technique of discipline. No doubt you have friends who feel differently about this. Certainly you must have heard them say, 'Why, when my child behaved that way, I gave him a good spanking and that was the end of it.' They're telling you the truth, too, in their naive way. Probably it was the end of it - from what they could tell.
But were they in the best possible position to make this diagnosis? They were interested in a specific result and got that result, but do they know what else happened in the thought, feeling or behavior of their child not obviously or immediately related to the very specific misbehavior they were trying to correct?
Spanking a child is effective only if it hurts him - hurts him enough so that he becomes afraid, not only of the thing he might have done, but of you. ... Spanking our child has still another unfortunate effect upon him. Just as he learns to fear us as a result, he will also learn to resent and hate us. Since our child also quite naturally loves us, we place an enormous burden of conflict upon him by infusing his feelings of love with those of fear, resentment and hate as well."

This seems to me to be very accurate, not only about spanking but any kind of aversive. Some aversives don't exactly hurt, but any effective aversive is unpleasant enough that the child will fear getting it. You can fear eating something disgusting, for example, even though the unpleasant taste isn't painful.

[children up to about 10 don't mourn much unless parents overburden them with their own grief]

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Friday, March 07, 2008

My Uncle Is Dead

My uncle was found dead a few days ago. The cause is not yet known. I'm not sure how to feel about it.
I never really knew him. I saw him as a baby, and once a few years ago at another relative's funeral, but my parents have minimised contact. However, I feel like I'm grown up with his ghost.
He was the one whose daughter disclosed sexual abuse to my parents, and whose children were taken away. It was two of his children who came to live in my home when I was 10 months old, and abused me until the last of them left when I was 5 years old. He also sexually abused my father when they were growing up, and had a long history of conning and emotionally abusing others.
Although my cousins chose how to cope with the abuse, had it not been for having been abused, they would never have abused me. Psychologically healthy 11-16 year olds do not sexually abuse preschoolers. Except for a very small minority (such as true pedophiles, who likely have a hormonal problem), all youth sexual abusers experienced serious abuse themselves.
There's little evidence that my uncle changed his ways. We don't know if he continued to sexually abuse others, but he was still conning and emotionally abusing others up until his death, and he showed no remorse for abusing his children. He had access to several of his grandchildren, from his three oldest children. (The youngest of the three, unlike all his siblings, shows no sign of being abusive, so the biggest risk to his child was his inappropriate trust of his father.) His death, mourned by some, may be the end to ongoing abuse for others.
So, if I'm not too sad about his death, it's understandable. But in a way I am sad. He didn't have much of a life. He wasn't a very happy person. He had talents which he never really used in any beneficial way. He never learnt that he could have a better life than he did, if only he changed his ways. My father says if he'd outlived his mother and sister (both of whom enabled him and supported him a great deal) he might've finally made some good changes, but he'll never get the chance now.
And he was my father's brother. My father loved him. He was kinder, in many ways, than his sister, and taught my father things. Though my parents cut contact with him when they found out he'd abused his children, my father continued to love him. Just like I love his son, despite all the abuse.

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Thursday, March 06, 2008

Changeling Lullaby

Changeling Lullaby, a video version of the song published in Our Voices.

[Edit: Here's a related post by Amanda Baggs.]

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Wednesday, March 05, 2008

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.

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Tuesday, March 04, 2008

YouTube videos of autism treatment


play therapy/Floortime:

animal assisted therapy:

assistive communication:

occupational therapy/sensory integration therapy:


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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.

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Sunday, March 02, 2008

It's Become Personal

When I first got involved in autistic rights, it was mostly an intellectual feeling of wrongness. I suspected I was autistic, and later knew for sure, but it didn't personally affect me much. Most of the contact I have with overtly anti-autism people is generally a) on the Internet, and b) initiated by me (I have plenty of contact with people who have no clue about autism, but are generally willing to take my word for it, though). The few overtly anti-autism people I've met since leaving school in grade 7 I am usually fairly able to defend myself against. They aren't that big a problem for me.
So at first, I was arguing on intellectual grounds, with little emotion. Not to say that I didn't care, I did, but in an intellectual way. The autistic people I advocated for were abstract to me.
But then I started volunteering with disabled kids. First, I participated in an ABA gymnastics program, with autistic kids and neurotypical kids. But ABA tends to keep you distant from the kids. Next, I volunteered with a program helping autistic kids train their own dogs, as assistance animals. But that didn't last long. Recently, however, I've been volunteering with a variety of disabled kids (though the program coordinator prefers to pair me with autistics) in a physical activity program.
In volunteering, I've met autistic kids. I've also seen the harm people do to them with good intentions. The worst example was twins with separation anxiety in the ABA program whose mother was used as a 'reward' (really, it was temporarily stopping a punishment). Another example, that I actually did more to help, was an autistic boy being gently restrained and redirected for hand-flapping. I certainly convinced them not to require me to do that, and I think I probably convinced them not to do it either by example.
The thing is, now it's not so intellectual. Now, I read things written by a parent of an autistic kid and imagine the parents of the kids I've met saying that. I read about murder of autistic kids and instead of just seeing a wrong, I see a child who died. I read stuff by professionals working with autistics and see the children they work with being treated in the way they advise. One professional said, in a book I read, that 'being teased is what happens when you act weird' and I imagined a young autistic bully victim hearing and believing that. (She actually said this to an autistic boy.) I read stuff by autistics who hate autism and my heart cries out with the thought that the kids I know may feel the same way.
It's still intellectual, because I still have reasoned arguments and logical conclusions. But now, it's also emotional. I realize more that real people are being actively hurt by these attitudes, and I feel intense empathy for them. To those who say 'spend time with an autistic child and their family and you will see how terrible autism is' - I have spent time with them. And rather than seeing a terrible disability, I see a terrible society.

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