Wednesday, August 30, 2006

Murder-Suicide with Autistic Kid

Kevin Leitch posted a blog entry about a woman who killed her disabled son, who is described as autistic by some and Fragile X by some. I wrote a response, but he'd closed the commenting, so I'm posting it here.

"To echo what Amanda has said, there have been reports (mercifully few) of mothers murdering their children – with and without the subsequent suicide of the mother – and the majority of them involve “typical” children."

"Yes, this was murder. Murder of a child, followed by the mother immediately imposing capital punishment on herself.
As a person on the autistic spectrum, a longtime sufferer from severe depression, and the mother of an autistic child, I have compassion for both mother and child here. Yes, she murdered her son. Yes, it was wrong to murder him because he was autistic.
But rather than pointing the finger at the mother, I see far more fault in a society that would leave her unsupported until she reached the breaking point which resulted in this terrible tragedy. I have been close to that point before, and I can tell you that- as a person with few financial and social resources- the support offered to me and my children has been woefully inadequate."

At one point in Half Breed, Maria Cambell (I think that's her name) described thinking about killing herself and her children. She changed her mind at the last minute. She felt like her life was intolerable, and since her children would only suffer the same sort of stuff she had, it would be better to spare them that.
I think most people reading that part view it as Maria Cambell being the target of discrimination to the point where she was very depressed, and her planning to kill her children as well as a twisted form of caring, considering her mental state.
But with disabled kids, it may be seen as perfectly reasonable, the discrimination aspect is usually ignored, and most people devalue the child(ren) killed.

"The nurse said, “you are getting better you are walking more each day” and the depressed person said, “No I’m not” The nurse said, “look, you walked all the way around the circuit…” the man replied, “Yeah, well you someone created (built) a shortcut through the middle of the center section we were walking around so that I was only walking half as much”"

When I get told I'm making progress, and given examples, I tend to say "that doesn't matter. It's this that matters." and point to something unchanged. For example, Mom says I've made progress because I have less meltdowns and the meltdowns are less severe. I respond that I haven't made progress because I feel just as trapped during meltdowns.

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Sunday, August 20, 2006

This is a list of institution-related links I want to print out later. I'm posting them here in case anyone wants to look at them.
About two different disabled children who died due to restraints in the same insztitution. One was Orlena Parker, a depressed 15 year old, and Casey Collier, a 17 year old autistic. Both of them were overweight and held facedown, which is especially risky for people in that weight range.
Another story about Casey Collier's death. Apparently he vomited while restrained, which might have contributed to his death (by reducing air flow). He was also asthmatic. As an asthmatic myself, I know that even just the terror of restraint can cause an asthma attack. Combined with being facedown with someone on top of you, breathing would be very poor.
More about Orlena Parker and Casey Collier.
A discussion in which people are outraged about restraint deaths, including Casey Collier's death.
Amanda Bagg's institution entries.
Stuff about Matthew's Law, a proposed law limiting aversives which is named after an autistic 14 year old, Matthew Goodman, who was killed by restraints.
Judge Rotenberg Center's website. This is a center for people with "behavioral problems" which uses aversives, most well-known of which is electric shock treatments. Some people have died due to these aversives. Others have been traumatized.
Information about Linda Cornelison's death. She was a 19 year old, developmentally delayed, nonverbal woman. After being starved for a long time, she started acting ill. She was repeatedly punished for these behaviors, meanwhile nothing was done about her illness. She died of a perforated stomach, thought to be related to starvation. She had extensive ulcxers, which probably caused the perforation.
A list of links about Judge Rotenberg Center.
About Antwone Nicholson, who was traumatised by JRC. Antwone, 17 years old, once said to his mother that she must not love him because she let them hurt him. His mother is now suing the state for sending him there.
Someone's blog entry about Antwone Nicholson and JRC.
Another article about JRC, with stuff about Antwone as well as others.
The Asperger's Express opinion statement about restraints and aversives.
CIBRA stands for Children Injured By Restraints and/or Aversives. It is an organization representing parents who are outraged at how their children were treated.
A number of articles about institutional abuse along with comments.
A description of an autistic boy, Nicholas Aquilino, age 13, who was severely traumatised by an institution. He will not leave his house and has been diagnosed with post traumatic stress disorder.'s list of links about restraints. At the top are links to other relevant link lists.
A story about Bailey Philipps, a 12 year old developmentally delayed, autistic girl who was physically abused in her school.
Joel has a list of "I am not" statements such as "I am not an object." A number of them refer to attitudes which are prevalent in institutions.
An account of the Standford Prison Experiment. In many cases institutions for disabled people are worse that prisons, because disabled people are more devalued.
Women survivors of psychiatric abuse talk. Most of them were diagnosed as crazy.
This is a page for reporting psychiatric abuse. It lists as one of the things "falsely diagnosed". So if you really do have the condition they diagnosed you with, is it not abuse?
Mind Freedom is an advocacy group for psychiatric survivors.
Abuses in a Montreal institution.
Astraea's page about psychiatric abuse.

If you can suggest more links, please do so.

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Friday, August 18, 2006

Opinion Shifts and Social Barriers

I read an article by the younger brother of a man, Chad, who has isodicentric chromosome 15. It's no longer available on the internet, but I have a printout. Towards the end he says that despite how wonderful Chad is and how much of that is because he's disabled, he'd never wish Chad's condition on another person.
This reminds me of my opinion on PKU. As I learnt more about untreated PKU, I realized just how valuable these people are. But still I didn't think people should feed PKU babies phenylalanine. I have since asked myself why, and now I am 'pro-choice' on the matter. I want people to be able to choose freely whether to give their PKU baby phenylalanine, instead of the automatic and societally enforced choice being 'no'.
While volunteering with autistic kids, I met a number of parents who seemed to instinctively view their child(ren) as fundamentally different and valuable in a unique way, while still saying that autistic kids should be cured and not thinking of it as destroying who their children were.
It seems to me that oftentimes, people who, through no choice of their own, ended up with a disabled family member reach some degree of acceptance (which is necessary for them to ever be happy again) but they stop at the point where fundamental assumptions would be challenged. They accept that their relative with an incurable disability is valuable and that the disability has benefits and isn't all bad, but don't challenge the idea that disabled people should be prevented.
The medical literature says that parents of disabled people have 'chronic sorrow', so that while they can reach some degree of acceptance of the disability, they are never able to completely move on because their child is a living reminder of their grief. Birthdays, seeing a normal child that reminds them of how their child might have been, all sorts of things open up the mourning again. It's like a wound that closes over but never heals.
However, I doubt the anti-cure parents of autistics, such as Kathleen Seidel, feel 'chronic sorrow' about their children being autistic. And I know for a fact that many Deaf people with Deaf children don't feel any grief at all about their children being deaf - in fact some mourn having a hearing child. It seems to me that 'chronic sorrow' only occurs if you have not completely accepted the disability, but simply found a way to live with something you still consider a bad thing. If you let go completely of your longing for a normal child, or never have that longing in the first place, you will not have chronic sorrow. Chronic sorrow occurs when you are living a situation that society's assumptions considers intolerable and you have found a way to cope while still accepting society's assumptions.

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Wednesday, August 02, 2006

Losing Diversity

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

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