Tuesday, August 05, 2008

Growing Backwards?

In the book When Autism Strikes: Families Cope with Childhood Disintegrative Disorder, one parent discusses an analogy that 'your first child runs through you like a river'. She says that we all know a river can go astray, dry up, or get polluted, but rivers don't go backward. Yet that's what her son Jordan seemed to do when his regression started.
But children with CDD and other forms of regressive autism don't really grow backwards. If someone was growing backwards, then they'd act like they did at a younger age. When you have a hyperverbal, sociable 2 year old growing into a shy, somewhat quirky 4 year old who then becomes an aloof, obsessive, echolalic 6 year old, that 6 year old is clearly not like he was at any age before 4. Before 2 years, he was a sociable nonverbal child who couldn't walk becoming a sociable walking child who used single words becoming a sociable running child who used communicative sentences. He was never echolalic, obsessive or aloof.
This is part of the mental age fallacy. An autistic child at any age is not the same as a same-age, younger or older child. And an autistic child who regressed is not like they were at a younger age.
So far, I've just been looking at outside appearances. If you look at what is going on inside the child, the analogy of growing backward fits even less.
Amanda Baggs described 'regression' like this:

"it’s your entire brain shifting around, focusing on some things that a lot of people find unimportant or bad, failing to focus on some things that a lot of people find important or good. Imagine that the things it is focusing on are exactly what you need to be focusing on. You are becoming the sort of person you need to be."

This sounds pretty much like a lot of the kind of changes that normally go with growing up. Not growing backward.
She also talks about how someone with brain damage can change afterward, which is another way you could view some cases of autistic regression. In that case, you're certainly not growing backward, and if your behaviour post-brain injury gets viewed at all as like a younger version of yourself, it's purely coincidence. Saying a person with brain damage is 'growing younger' because they have lost skills they previously had is like saying a 4 year old who went deaf and then forgot how to talk has 'grown younger' because xyr communication skills superficially resemble a younger child. The kid's expressive language skills may be said to be at a 1 year old level, but firstly, their receptive language skills are poorer than a 1 year old while their motor and cognitive skills are much better, and secondly, when that kid was 1, xe could hear. Xe couldn't speak for very different reasons than now.
Here's an analogy I thought of awhile back:
Three children are traveling along three paths, that appear to be pretty close to identical. They are traveling at the same rate.
One kid is normal - xyr path may be straight or winding, but other people view that as the expected path for a child to take.
The second child seems to be heading along that path, but then xyr path turns when the other one doesn't, or doesn't turn when the other one does, and you realize xe was actually heading along a different path all along. This is what autistic regression usually is like.
The third child really is heading down the usual path, but then xe gets jostled onto a different path and start walking along it instead. This is more like brain damage.
None of those children ever went backward. They never retraced a part of the path they'd seen before. Instead, they all kept going forward, but the path ahead diverges from the other two children in various ways.

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Thursday, September 27, 2007

People Like Me Are...

I found an interesting quote today:

"As I got a little older, I saw people who moved and sounded familiar, like me in some fundamental way that other people were not. Inevitably they were being walked around in a line by staff, and coming from the nearby state institution or some of the group homes in the area. I found this ominous.
Part of the reason I ended up in institutions to begin with was my terror of ending up in one and my knowledge that given the way things seemed to work it must be inevitable sooner or later. There just were not people like me on the outside. And as the shifts of adolescence came around, what a person-like-me was, was unmasked to other people in more ways than one."
http://ballastexistenz.autistics.org/?p=218

I've read that particular article before, but this time, this phrase really jumped out at me on a personal level.
I have a young autistic friend. He's considered severely disabled. For the first little while, he acted fascinated and delighted at me acting autistic (he's kind of gotten used to it by now). I thought at first it was just finding 'someone like him' or 'an adult like him' (although I don't think of myself as an adult, he probably does). But he definitely has contact with lots of other autistics, including in the very same setting I met him in. He may have met other autistic adult, I wouldn't be surprised if he has.
I wonder if what really fascinated him about me was that I was someone like him on the 'other side' of the helper/helped hierarchy that he is constantly experiencing (as one being helped). I suspect all the other autistics he's met have all been on the same side of that hierarchy as he is, all other recipients of similar kinds of help as he receives. Which means it might be that he was surprised that autistics can be helpers as well as the helped.
I can't know for sure if that's what he's thinking, of course. But it gives me another way of looking at him. He's the kind of person most people assume is unable to perceive or react to discrimination and hierarchies on this kind of conceptual level, but then, so is Amanda Baggs, and she wrote that article.
Ettina

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Friday, December 08, 2006

Planning for Support or Avoiding the Pain?

Quite awhile ago, I decided to write a post about the horrible Autism Every Day video. It was really upsetting me, but as long as I was watching and writing responses I barely noticed my feelings. Then we had to go, and I left it unfinished, planning to finish it shortly afterwards. As I posted soon after, though, I had a meltdown that night because of all the unhappiness I'd been pushing down.
This was in summertime. It's almost 2007 and the post I planned to finish at my next opportunity is not finished, and many other posts have been made. What happened? I decided to plan for emotional support. Thinking of that meant that every time I considered finishing that post, I'd anticipate how much it would upset me and put it off.
Recently, Amanda Baggs posted about a video by the Judge Rotenberg Center. I considered watching the video she discussed, but didn't have the time. Since then I've had time to recognize how much the JRC reminds me of my first school, only worse, and just how terrifying it is. They directly attack the ways I survived in my first school. I thought to myself 'they can't kill me' whenever I was heading for a big confrontation. I also knew I'd get sent home to understanding parents. The second is how that movie would trigger me.
Once, to my father's outrage, he was told they should treat me worse so I didn't want to get sent home. If I knew my parents would react to me describing how I'd hidden under a table to get away from my teachers and they'd dragged me out, hurting and terrifying me, by saying 'can you talk about something good about the school?' I have no idea how I'd survive. Running away, trying to kill parents/teachers, or pretending I can no longer see, hear or move come to mind. However, I might not be able to escape, and my dislike of hurting others means that killing someone is not something I'll do, and if I did get so desperate that I could bring myself from imagining killing someone to really killing someone, no doubt they'd be able to stop me. And as for the last, 'noncompliance' would be punished, and a punishment causing unbearable pain would be intolerable.
It's like acknowledging that something will hurt has given myself permission to avoid doing things that are important to me. I don't like this. We're home today, me and Mom, so I asked her if she could be there for me while I watch the rest of the Autism Every Day video. Mom told me she couldn't handle it today, but in a couple days she can.
I'm scared that I'll put it off again, that I won't be able to bring myself to do it. I'm worried that maybe Mom is really saying she doesn't care about me enough to put up with me needing support, and she'll put it off again (unreasonable, but try telling my emotions that). I really want to do this, but I'm scared.

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Thursday, November 23, 2006

Viewing Disabled People as Childlike

Amanda Baggs has recently posted a thing about Bernard Rimland's death. John Best commented with a bunch of nasty comments, one of which was telling Camille that she should giver her child treatment for mercury poisoning 'so that it will be out of diapers someday'. As well as the reference to an autistic child (does Camille even have a child? I can't remember. If so, how would he know if xe is in diapers or not?) as it, this comment also shows the view that being in diapers all your life is a horrible thing.
Disabled adults are often compared to children, and disabled children to younger children than they are. Often this comparison seems meant to devalue disabled people. I've seen people say the same nasty things about newborns (claiming that there's nothing going on in their minds) as they do about severely disabled people. I've seen people describe disabled people as 'perpetual children' in a way that implies that being a perpetual child makes you less worthwhile.
Often disabled people react by insisting they are not like children. But they don't ask why it is that they are being compared to children, or why this should be a bad thing. What's wrong with being childlike? Why are disabled people so often compared to children?
It seems to me that the commonality is dependence. Disabled people and children need more assistance than nondisabled adults. Disabled people and children have more difficulty contributing in the strictly defined way that our society seems to value.
A lot of people seem to view children as being worthwhile mostly because they will be adults someday. People talk about children as 'the future'. It's like children are simply adults-to-be, and what worth there is to childhood itself is mostly in how it prepares you for adulthood. If you consider children's worth to be primarily that they'll be adults sometime, and the care given to them primarily as investing into our future, then a 'perpetual child' would be waste. A perpetual child would be receiving without giving, a burden on others. That is precisely how disabled people are viewed.
But I think there is worth in children besides who they'll be. I find worth in who a child is, right now. Children contribute, as children, things that, though they are devalued by society, are very worthwhile.

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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.

http://csindy.com/csindy/2003-07-24/cover.html
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.

http://www.caica.org/NEWS%20DEATHS%20Casey1.htm
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.

http://www.isaccorp.org/devereux/devereux-colorado.03.13.03.html
More about Orlena Parker and Casey Collier.

http://www.ualberta.ca/~jpdasddc/abuse/ICAD/digests/restraints.html
A discussion in which people are outraged about restraint deaths, including Casey Collier's death.

http://ballastexistenz.autistics.org/?cat=47
Amanda Bagg's institution entries.

http://www.inclusiondaily.com/news/institutions/nj/bancroft.htm
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.

http://www.judgerc.org/
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.

http://normemma.com/lcorneli.htm
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.

http://www.nospank.net/jrc-1.htm
A list of links about Judge Rotenberg Center.

http://www.boston.com/news/local/articles/2006/05/22/a_question_of_tough_love_vs_torture/
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.

http://edwatch.blogspot.com/2006_05_21_edwatch_archive.html
Someone's blog entry about Antwone Nicholson and JRC.

http://www.nospank.net/jrc-2.htm
Another article about JRC, with stuff about Antwone as well as others.

http://www.aspergersexpress.com/restraints_and_aversives.htm
The Asperger's Express opinion statement about restraints and aversives.

http://users.1st.net/cibra
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.

http://radio.weblogs.com/0119802/
A number of articles about institutional abuse along with comments.

http://www.northjersey.com/page.php?qstr=eXJpcnk3ZjcxN2Y3dnFlZUVFeXkzJmZnYmVsN2Y3dnFlZUVFeXk2Mzc2OTg1
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.

http://www.neurodiversity.com/restraints.html
Neurodiversity.com's list of links about restraints. At the top are links to other relevant link lists.

http://www.winonapost.com/archive/www/041303/1news.html
A story about Bailey Philipps, a 12 year old developmentally delayed, autistic girl who was physically abused in her school.

http://www.geocities.com/growingjoel/iamnot.html
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.

http://www.prisonexp.org/
An account of the Standford Prison Experiment. In many cases institutions for disabled people are worse that prisons, because disabled people are more devalued.

http://www.feministpeacenetwork.org/survivors.htm
Women survivors of psychiatric abuse talk. Most of them were diagnosed as crazy.

http://www.cchr.org/index.cfm/5353
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?

http://www.mindfreedom.org/
Mind Freedom is an advocacy group for psychiatric survivors.

http://www.oikos.org/psychabuse.htm
Abuses in a Montreal institution.

http://www.astraeasweb.net/politics/badpsych.shtml
Astraea's page about psychiatric abuse.

If you can suggest more links, please do so.

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