An Insight Sadly Ignored

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

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

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

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

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

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

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

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

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

DSM criteria on my website

I've started putting DSM criteria on my website, for the following two reasons:

Awhile back I tried to find older DSM criteria (I believe DSM-III-R but can't remember exactly) for some conditions and discovered that the only DSM criteria available on the Internet, that I could find by googling, was DSM-IV. History is important, and I'd like older DSM criteria to be publicly available so people can see the history of the DSM.

Recently I happened, on impulse, to photocopy a substantial chunk of the DSM-III and DSM-III-R while I was at the Health Sciences branch of my local universary's library.

So anyway, on my page I've put up the DSM-III and -III-R criteria for conduct disorder, the autistic spectrum and ADHD so far, and linked to the DSM-IV criteria. I will do more conditions, and probably put up my own summaries of the changes in the criteria and what I think about that (for example, DSM-III had a category called Childhood Onset Pervasive Developmental Disorder which was most likely roughly equivalent to DSM-IV's Childhood Disintegrative Disorder), as time goes on.

Strength in Abnormality = Deficit is Nothing New

One phenomenon I've noted is the tendency to try to interpret every way a disabled person differs from the norm as a deficit, even our strengths. The most well-known example of this is probably the Block Design peak in autism.
A number of studies found that autistics tend to have noticeable strength in Block Design, in some kids significantly better than normal (I once saw the IQ test scores for an autistic boy who had gotten the lowest possible score on Comprehension and Vocabulary and the highest possible score on Block Design). Not all autistics have Block Design peak, but it's extremely rare for a non-autistic to have significant Block Design peak.
The interpretation given to that was 'weak central coherence' - a deficit in perceiving the big picture, 'can't see the forest for the trees' cognitive style. In reality, most people, including autistics, do not naturally segment images into equally sized blocks but rather along color borders and using a bunch of extrapolation to estimate what the thing looks like in 3 dimensions. There have been a number of studies showing this, and no evidence has been presented to suggest this is vastly different in autism. So in order for anyone to do well on Block Design, they must force a different segmentation than is natural, something which someone with weak central coherence would have difficulty doing.
But the tendency to interpret a strength in a disabled person as a deficit is very pervasive. And just now I discovered it dates back at least to 1953, most likely earlier. In 1953, Margaret S Mahler and Paula Elkisch described a child, Stanley, considered 'psychotic', in the journal The Psychoanalytic Study of the Child, volume 8, pages 252-261.
Stanley was a strange boy. He cried whenever he heard a story 'When You Were A Baby' which he insisted on hearing, and reacted similarly to a number of other stories about babies. He would try to feed pictures of crying babies and played with a book called Fun With Faces, in which you could switch a baby's face from crying to not crying. While playing with that face he "threw up his stiffened and flexed arms, strained and tightened his arm muscles rhythmically in this position for some time, while twisting his head downward and to the left side. His face was bizarrely distorted with widely open mouth and protruding tongue."
Relevant to this post, he showed a remarkable memory. This was not interpreted in a positive manner. Rather, this is how they introduced their article:

"Parents of psychotic children frequently stress the fabulous memory these youngsters have. Closer examination of this phenomenon in severely disturbed children reveals that this seemingly positive ability actually expresses grave pathology of the ego in the most crucial and important mechanism of defense: repression."

In other words, Stanley had a deficit in forgetting!

This is What Murderers Are Like?

While searching for stuff on parents murdering disabled children, I found a different case. Three eight year olds were murdered. When they asked a probation officer who he suspected, he named a bipolar 18 year old because 'he wore a black leather coat in all weather and listened to "devil music" such as Pink Floyd and Metallica.'
They questioned that boy and his developmentally disabled 17 year old friend, and the 17 year old confessed that he, the 18 year old and another friend had stabbed and raped the three boys. The problem: the victims had been beaten instead of stabbed (they had what appeared to be stab wounds, but were actually from wildlife), and had not been sexually assaulted.
Despite the evidence against their guilt, they were convicted. The 18 year old and 17 year old were convicted to life in prison, their friend to the death sentence (this was in US). Luckily, before the last sentence could be carried out, the case 'fell apart' and the three teens were declared innocent.
My question is: how much of this is related to the disabilities that at least two of the suspects had? I know of a bipolar man who was shot as a suspected terrorist, and it seems bipolar people often seem similar to the stereotype of a murderer. Was the fact that the one boy was bipolar related to this?

Counselors for Neuroatypical People

I'm autistic and also have PTSD (post traumatic stress disorder). The latter is something I've often received counseling for, but sometimes the fact that I'm autistic and most people aren't gets in the way.
There are two kinds of problematic counselours when it comes to me being autistic - those that think they know autism and those that don't know anything about autism. The first group is by far the worst.
I had a counselor like this. She was a hard of hearing woman with much experience counseling autistic people. She was firmly of the opinion that anyone who was different in any way should try their best to conform. (One of the first signs of this may have been when I innocently commented, upon her saying she was hard of hearing, that I'd noticed she had a slight hint of the 'deaf accent'. She seemed dismayed.) She kept nagging me about stimming and decided my biggest current problem was that I was homeschooled, and she must find me a special education placement. I spent my entire time with her arguing and treating her like an embodiment of one of my teachers.
It's been noted by many autistic people that autism 'experts' really don't have a clue about what it's like to be autistic. The worst thing is that they think they do. So if you try to tell them they're wrong, they often won't listen. They'll sometimes even try to tell you how you feel, as opposed to how you really feel. In my experience, also, they're prone to view autism as a problem, rather than accepting that I really am fine with being autistic.
The second type is much preferable. This is the type I usually have. Generally, they are people who specialize in trauma or more specifically sexual abuse, who, unlike autism experts, really do understand the people they specialize in treating (because the literature on trauma and recovery is much more informed by actual trauma survivors than the literature on autism), and though they know even less about what it's like to be autistic than most autism experts, they know they don't know. This means they are teachable, because they accept that I actually know more about what it's like to be autistic than they do.
However, with the second type, I spend far too much time trying to teach them, and every bit of advice they give is generally aimed at neurotypical trauma survivors, and therefore may not apply very well to me. The biggest problem is that I don't always know how to tell if it applies or not right away, and if it doesn't I can't necessarily explain why. I found it very difficult, for example, to explain why cognitive behavioral therapy does not apply at all to me (I tried to explain why in this post).
Oh, and by the way, here's a survey about emotional experiences:
Click Here to take survey

Murder of Kids With Attachment Disorders

This is another category of kid who are often murdered by caregivers. Reactive Attachment Disorder (RAD) is caused by a) living in an environment unsuitable for attachment, such as with an emotionally neglectful parent, and/or b) losing a primary caregiver, such as with foster or older adopted kids. These kids have serious difficulty trusting others because they either lost or never developed the basic expectation that their parent will always be there and help them. As a result, they can have serious behavioral problems and often don't give parents the same kind of 'rewards', such as expressing love and trust. Some parents end up killing these kids. Here's some news stories about this:
http://www.newsweek.com/id/74385/page/1
http://www.ratbags.com/rsoles/comment/candace.htm (this one about an abusive therapy)
http://www.salon.com/sept97/mothers/renee970930.html

Eugenics Comments

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

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

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

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

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

Asperger Syndrome, Nerds and the Why Label? Debate

Here is something I e-mailed the author of a book I read recently called Nerds:

"I liked much of what you said in your book, but one thing I didn't like is your description of Asperger Syndrome.
Firstly, why the focus on 'functional impairment'? That is not an inherent characteristic of anyone. By that definition, an AS-acting person who had no friends and was bullied severely in elementary school but is now a well-accepted engineering student has ceased to have Asperger Syndrome, despite the fact that the exact same traits their classmates hated are all still present. They haven't changed - their situation has.
I am certainly against viewing the characteristics of 'mild autism' or Asperger Syndrome as pathological, but I don't think the best way to do that is to just think of them as nerds instead of autistic. Sure, that might bring people like me more acceptance, but what about the wonderful people I know who are much closer to the stereotype of 'retard' than 'nerd'? What about people like Amanda Baggs ( ballastexistenz.autistics.org ) a wonderful autistic woman who types to communicate and has frequently been referred to as retarded? I'm not willing to leave them behind in my quest for acceptance.
And besides, being called a nerd never gave me the key to understanding myself. Being called autistic has. Though scientists don't really understand autism very well, there's more actual attempt to understand them than nerds. Nerds are known to have trouble interacting with others, but the question 'why?' isn't really asked. According to science, autistic people can't read the nonverbal signals (according to autistics, because we have different ones). If I'm a nerd, there's no help for me. I have to navigate it all on my own. If I'm autistic, I can find out why I have trouble with certain things and what might be able to help me. Of course, I'd much rather pick the third option - understanding the unique needs of the unique and wonderful group of people I happen to belong to and meeting our needs without stigmatizing us - I'm fighting for that very thing.
I hope you can agree with that goal. And I don't want it just for people like me, but for those who fit so poorly into our society's expectations that it seems obvious to virtually everyone that they're incapable."

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.]