Sunday, May 27, 2007

An Interesting Book About Helping

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

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

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

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Friday, May 25, 2007

The Risks of Incorrect Assumptions in Facilitated Communication

Here are, in my opinion, the risks of incorrectly dismissing FC and of incorrectly accepting FC, for the disabled person and their family.
Incorrectly Dismissing FC:
From the perspective of the disabled person, they would get a method of communication only to have it taken away or ignored. Their attempts to communicate are thwarted, causing unhappiness, and their caregivers continue to do things to them that they don't want them to, or not do things the person wants.
From the perspective of their family, the consequences are less serious, but they are likely to have more difficulty interacting with and understanding the person. The disabled person may use bad behavior to communicate, which adversely affects the family. Also, they do not have the opportunity to truly get to know their child.
Incorrectly Accepting FC:
For the individual, the consequences depend on whether they know this represents communication. If they do not, it may be an enjoyable game, or it may be unpleasant and frustrating. If they know it is communication and that they're not typing what they really think, it's likely to be quite unpleasant. Either way, they may also suffer from wrong decisions made about their life based on what they supposedly are communicating. Other methods of communication may be stopped or not tried because the person is thought to be already communicating sufficiently.
For the family, they are barred from truly getting to know their child. If the person reacts to not communicating or to incorrect decisions made based on FC with bad behavior, they also suffer as a result.
In cases where the FC user has made an allegation of sexual abuse, the consequences for them are much more severe. They could be left to suffer further abuse despite their seeking help or taken away from good parents. If the allegation is true, the abuser benefits if they are ignored and suffers justly if they are listened to, whereas if the allegation is false, the alleged abuser suffers somewhat either way, but more so if they are listened to. The worst outcome is to allow real abuse to continue, so the abuse allegation must not be dismissed too easily. However, it harms both the family nor the individual if a false allegation is believed, so the situation should be carefully examined.
Some ways to minimise potential harm:
  • continue to work on developing other methods of communication
  • work towards reduced facilitation, as long as legibility does not suffer to the degree that they can't be understood
  • do not make assumptions either of competence or inability (especially inability) - observe closely, they may show signs of understanding that are easy to miss.
  • don't try to prove your assumptions, instead be open to possibilities
  • use multiple facilitators, if possible, and look for confirmation and contradiction of communication
  • do not assume that FC is an either/or thing - in many cases, there may be both facilitator influence and true communication, sometimes in the same message.


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Tuesday, May 22, 2007

Left-handedness and School Trauma

Here are some links and quotes about left-handed kids being forced by schools to be right-handed:

"In the past year, I have become increasingly aware of how common it is that parents, educators, and others are STILL forcing lefty children to be right-handed.
Having a backround in psychology, I have read thousands of journal articles on the subject of handedness. The consiquences of this form of child abuse and descrimination are severe to the child.
There is absolutely NO EXCUSE for this kind of child abuse. Many of these so-called reasons for forcing lefties to be right-handed could very easily be problem-solved with the smallest amount of thought. It is astounding that their aren't laws to protect left-handed children from whatever twisted and evil individual would afflict this torture on a child.
Much of what I have run across in the general public is that most people believe that this form of child abuse no longer occurs. This perspective is completely inaccurate and has severe consiquences to the victim.
I am working at a legislative level to ensure that those who feel they are God and can force a left-handed child to be right-handed will have the same consiquences as any other individual who decideds to torture a child for any other reason. If these individuals don't think that doing this to a left-handed child is harmful, than a 7-10 year stint in the federal or state pen should be no problem for them either."

"I'm left handed through genetics yet my parents and my school forced me to write right handed and they had 6 left handers in the class and they only had 4 sets of left handed scissors and they changed they persons who names were nearer the top of the register and the bottom and i'm the last on the register and i only found out a bout this a few weeks ago as my mum let it slip and now i'm writing left handed. And its still a bit messey but it's comming on faster than my right hand and now i am at secondrey school i can use both sets of scissors only prob is textiles they have only right handed scissors. i feel if someone if left handed they shouldn't change them as i had writing lessons for my right hand when i was 10." (Amy)

"Forcing a child to use their nondominant hand will result in surreptitious attempts to use the proper hand -- thus "rebellious." Punishing a child for behaving as they are meant to in using their left hand will also result in tears of frustration -- hence 'unstable.' Handwriting will be nearly illegible -- 'clumsy.' And after years of this frustration and persecution, a lefthander may turn away from school and learning altogether -- 'unintelligent.'" (about Residential schools instead)

"I heard this and I understand exactly how Mr. Kaufman felt, I was forced to be right handed when I was 5 years old. I am now 26 years old and I recently switched back to being left handed. There was alot of emotional stress and pain attached with it. I never understood why it was so “wrong” to be left handed. It caused me alot of pain through the years that I was forced to be right handed all the while thinking “Why am I not using my left?” I tried to switch back other times but felt it was wrong and feared negative repercussions. So I finally had it and I fought through the pain and the ingrained negative stigmas about left handedness. Though I have only been back at it for a week it feels so natural, I cried and cried because I felt so so happy, like everything fell into place and that I was me again. All these years it had made me miserable I am so glad that I finally listened to myself." (Mari Ongstad)

"I was a child of the ’50s whose teacher would slap my hand with a ruler if I put the pencil in my left hand. This was public school in Missouri 1st thru 3rd grade, this then carried to public schools in California from the middle of 3rd grade thru 5th grade. Teachers would point out how different I was to the class, I then would write at school with my right hand and at home with my left hand." (Debra Steele)

"My father attended a school in London during the 1930s. He was naturally left handed so his left hand was tied behind his back and he was forced to write with his right hand. This was, apparently, common practise in those days." (Joanna)

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.

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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?
"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?

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Saturday, May 19, 2007

Emotional Differences

Firstly, I'll just mention that a couple weeks ago I developed really bad joint pain. Shortly afterwards I had a bad asthma attack and ended up in emergency. They gave me a temporary prescription that helped me breathe but made it very hard to sleep, and now I'm on an inhaler which also helps me breathe with less (but still some) insomnia. And the day before yesterday I developed some kind of pain in my right arm that really interferes with typing, but seems to be gone for the moment (I hope). All that interferes a lot with blogging. [Note: Actually, it appears the earlier medication may have been slow to get out of my system, because the insomnia has steadily decreased until now I'm sleeping about as well as I usually do (which is mild difficulty falling asleep).]
Anyway, I've been getting counseling lately, with a psychologist who specializes in sexual abuse but knows very little about autism. Fortunately, she knows it, unlike many autism 'experts', so she's teachable.
Anyway, the second-last session I had, she was trying to give me a piece of advice which I could tell didn't apply to the kind of mind I have, but whenever I tried to explain, her reply made it clear to me that she was misinterpreting my response in the framework of an NT mind. The situation was this:
Many sources will say that in attacks of self-hate, you need to identify the thoughts that are triggering that feeling. I've also heard that if you can replace 'I feel' with 'I think' and have a sentence that makes sense, then it's not a feeling, it's a thought.
I don't know if this is true for NTs, but it's not true for me. But I can't really explain how it isn't true. Attacks of self-hate are triggering by a brief flash of a feeling, sometimes loosely linked with a picture. The feeling is of people watching me and judging me. But I don't think "People are watching me and judging me". It's like I feel the 'essence' of eyes staring at me in a judging, disapproving way. I very often have feelings like this, which are emotions combined with a kind of tactile 'essences' sometimes accompanied by visual images. There are no words to it unless I try to articulate how I'm feeling, and thereby place words on it. It's like saying 'I see a cat' in response to visual and tactile fur, raspy tongue, vertically-slitted pupils in green or yellow eyes, pink nose, etc moving in a cat-like pattern. The experience of interacting with a cat is not words, you simply put words on it.
So I was trying to describe this to the counselor, and not being very successful. And it was especially frustrating because I knew she was trying to help - I couldn't just think 'she's against me' and stop trying to explain. And I didn't really understand it myself (I still don't, but my understanding of it has shifted into relatively greater clarity while I was thinking about other things).
So she was giving me advice, and I just started staring at the ground and thinking 'If I don't say anything, she'll stop talking eventually.' I was trying to block it out. But this time, rather than just shutting off any positive relationship with her like I tend to do whenever I have problems with someone, as soon as she finished talking I told her what had happened. And so she dropped the issue for awhile, and we got it to some degree of resolution. We talked instead about my self-injury, and I decided to try to stop hurting myself. (And except for one meltdown - described below - and a few very fast unthinking hits on my head, I haven't hurt myself since.)
Later that day, I had a meltdown where I was screaming at my parents to 'listen to me' and trying to explain how I felt while working around my rigid mental rules of psychological self-defense that trap me during meltdowns. As usual, the result wasn't making much sense, particularly because we were all upset. I kept telling them they didn't care about me because if they cared about me they'd listen to what I was saying and their replies - making it clear they didn't understand - were proof they weren't listening.
And suddenly I realized that I'm very triggered by not being understood. Since only 1 out of 100 people is autistic and there is extreme variation in autism, this is particularly unfortunate. But that's probably a big part of why this is a big issue for me - all my life, and especially in school, I've been misunderstood and misinterpreted. In school they used it as a form of emotional abuse, but even caring, well-meaning people who've known me all my life find it hard to understand how I think. And a big part of the problem is that the vocabulary for describing mental states has been designed by NTs for describing NT minds, and so every word is basically an analogy for what's going on in my mind, rather than The Word for it.
I think I'll try to become a researcher into autistic emotions when I'm older, if I can. Michelle Dawson's articles about autistic thought describe my mind much better than the other research into autistic cognition (most of which only makes sense to me if I try to imagine observing myself with no understanding of how I think). If I could do the same for autistic emotions, that would be a big help. And trauma in autism in particular. I just wish the research I'm planning to do had already been done, so I could benefit from it.

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Tuesday, May 08, 2007

Bullying a 'Benefit' of Inclusion

I just found a quote in a book that makes me angry. The book is Schooling without Labels, by Douglas Biklen. At one point, he quotes a parent to illustrate one of the 'benefits' of inclusion:

"I think no matter how severely retarded or handicapped kids are, they are not dumb. I think they really can perceive themselves in relation to other people around them. Peers exert a lot of pressure on each other. Some of that is positive and some of it is negative. I have heard kids in Ben's class say to him when he is doing something that looks dumb, 'That looks dumb.' Now he may repeat [the statement] 'that looks dumb,' but he is also more likely to stop. If kids stay away from him because he is doing something that looks stupid or hurtful, he is aware of that; he doesn't like to be alone. So he will make the effort to try to stop because he wants to be with the kids."

What is good about that? So he may try harder not to self-injure (one of the 'dumb-looking' things this boy did). He is also learning to hate himself and strive to become someone he will never be. This is an extremely damaging lesson to learn and in fact should be considered a disadvantage of inclusion.
Because of bullying, I lost my pride in my physical abilities. I'm flexible and can sprint well, but I have poor hand-eye coordination and balance, can't coordinate my movements with other people or other external things, and tire easily. I never felt bad about that when I was young and in fact enjoyed physical education class and got plenty of exercise. Now, whenever I try to exercise, I feel ashamed of myself - so I avoid exercizing.
Because of bullying, I learnt to supress emotional expression. When my brother is annoying me, I show no reaction until I reach my limit and yell at him. When you are around people who care about you, hiding your emotions harms you and them. The only way it is ever helpful is that when you are being bullied, it can shield you from some harm sometimes.
Because of bullying, I am scared to stim in public. I talk to myself a lot, but I automatically lower my voice or fall silent when someone else comes near. I supress excitement rather than jump and flap my hands, which is my natural expression of excitement. As a result, I don't feel the excitement. I automatically put on an NT front when I'm talking to any non-adult older than 10 or so, unless they're disabled enough that I don't think of them as teenagers. This front means not talking about anything that actually interests me (or else I'll 'talk too much'), being evasive about things like why I'm homeschooled or whether I have crushes, and many other things. It is exhausting to put up this front and it means I can't develop a true friendship or really care about that person.
And this is supposed to be a benefit of inclusion?

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Friday, May 04, 2007

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.

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Wednesday, May 02, 2007

Autistic Sense of Humor

I am diagnosed autistic. My Dad isn't diagnosed, but he's probably on the spectrum as well.

I was reading a book and found an interesting fact - smell is the most poorly understood sense. I asked my Dad: "Guess what the most poorly understood sense is?"
He replied: "ESP."
"ESP isn't real!"
"See what I mean? But one of these days I'll show them all, and they won't call me a crazy aardvark anymore!"
"Well, if you wouldn't eat ants, we wouldn't call you a crazy aardvark!" (At which point my Dad burst out laughing.)
During all this my Mom, who is a gifted allistic (non-autistic) person, was just trying to mentally keep up with this descent into weirdness.

And they say autistics don't have a sense of humor! I will analyze jokes rather than laugh at them, but it's more a different kind of humor than a lack of humor.

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Is Autism an Invisible Disability?

It's said that autism is an 'invisible disability' because there isn't a distinctive autistic facial appearance, or some easily noticeable aid every (or most) autistics use, or whatever. However, it isn't always.
Firstly, some autistics present as very noticeably odd. Most people can probably tell someone is disabled if they are visibly stimming, have odd movement patterns and do not speak (with the exception of young children). Especially if, like many people who present that way, they have someone with them who is acting very patronizing and staff-like towards them. Some people describe this as 'looking retarded' which is probably what most people tend to think about someone who presents this way. If they can speak, but are doing so oddly, they may be considered retarded or 'crazy'.
Secondly, syndromal autism can be visible in the same way any syndrome is. Many conditions can cause both autism and a distinctive, unusual appearance. Some syndromes cause an appearance that isn't visibly odd, others cause one that is. I have a friend with a kind of syndromal autism, who has an unusual appearance and also walks oddly because of scoliosis and other motor issues. I think he's hypotonic, haven't been told this but he moves like a hypotonic person. Anyway, all those make it that, even if he acted fairly NT (which he doesn't) people would know he wasn't normal.
Lastly, if you know plenty of autistics, you can spot it even in 'mildly autistic' people. When I look at pictures taken of me when I didn't know my dad was taking a picture of me, my autistic mannerisms are fairly visible. The most obvious one, to me, is holding your arms up near your chest. CP people do this too, but it's different with CP - more stiff (I can recognize CP pretty well too). I just find that if I'm not thinking about my posture, very often my hands will be up near my upper body. This is only one example, there are others. It's like recognizing a person from a certain culture by their mannerisms (something I can't do, but lots of people I know can with cultures they are familiar with). My dad has noticed, for example, that Cree people sometimes point with their mouths.

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