What's not in the news: the organization Autism Speaks (tm) is having shit fits again over anyone who dares to use their name. Some folks may remember when the organization went after an autistic girl for launching a parody website. The website is currently living at http://www.aspiesforfreedom.com/ntspeaks/. I encourage anyone who cares to go there and see what upset the organization Autism Speaks (tm).
Now Autism Speaks (tm) has issued a takedown order to Zazzle //and Zack of Aspie Web demanding that his teeshirts be pulled from the Zazzle site. The uh offending trademark violating (smirk) teeshirt can be seen over here at Aspie Web:
http://www.aspieweb.net/aspieweb-being-bullied-by-autism-speaks/ . Zazzle did write back to Zack stating that Autism Speaks (tm) did indeed contact Zazzle: http://www.aspieweb.net/proof-that-autism-speaks-is-attacking-autism-self-advocacy/
Zack made some other stuff now and it can be found at:
http://www.aspieweb.net/
aspieweb-vs-autism-speaks-fight-for-the-right-for-autistics-to-speak/
An excellent post by Amanda over at: http://ballastexistenz.autistics.org/?p=542#comment-173070
explains how Autism Speaks (tm) derives its' numbers and other stuff-- worth reading.
Meanwhile, Lawrence Benjamin Arnold has secured the domain http://www.autismspeaks.eu where he plans to focus on self-advocacy issues of autistics everywhere and particularly in Europe where autistics have a nice record of speaking out.
For one example see:
http://www.autism-hub.co.uk/autism-speaks-dont-speak-for-me/index.php
radical sapphoq says: Zach is correct. Autism Speaks (tm) does not speak for us yet the organization feels free to include us who can talk and wipe our own asses in their numbers. Something stinks there. Over at google news, there is no mention of the legal crap that Autism Speaks (tm) is pulling on Zack who is not supportive of their particular message. You know the one. The one that says that autism can/should/will be cured. That mercury in vaccines causes autism (has been disproven so thoroughly by scientists that it appears that Autism Speaks (tm) backed down on that one). That autism is a tragedy. Oh, wait. Only the kinds that make for a kid to be non-verbal and needing all kinds of extra help for activities of daily living. The rest of us can go rot. And since we won't quietly go away, Autism Speaks (tm) can conceivably come after any one of us that it can. Pissed off? Doesn't begin to describe my emotional state at the moment.
The blogger sapphoq is not affiliated with the organization known as Autism Speaks (tm) in any way, the blogger sapphoq did not ask Autism Speaks (tm) http://www.autismspeaks.org/
if she could use their trademarked name, the blogger sapphoq is not sponsored by Autism Speaks (tm) in any way. The blogger sapphoq has opinions.
http://www.publaw.com/fairusetrade.html
It is difficult to blog about what an organization is doing without mentioning the name of the organization.
In the news: an autistic girl in Canada. Seems the educational aide went to a psychic who asked her, "Are you working with a girl whose name starts with a V?" (yes). "She is being sexually abused by a guy between the ages of 23 and 26." The school did the only logical thing-- Children's Aid Society was called. (Americans: think Child Abuse Hotline or D.S.S.).
Mom was then presented with a list of "behaviors" that could possibly constitute signs and symptoms of sexual abuse. Mom protested. Victoria is severely autistic. The Children's Aid Society fortunately was not willing to put stock in a psychic's tip. The report was taken and then quickly dismissed. Mom has sought legal advice regarding the possibility of lawsuit. Meanwhile, Victoria is not going to school. Mom is not going to work. The two are home together all day.
http://www.nationalpost.com/most_popular/story.html?id=597195
http://toronto.ctv.ca/servlet/an/local/CTVNews/20080618/
psychic_abuse_080618/20080618/?hub=TorontoNewHome
http://www.shortnews.com/start.cfm?id=71516
http://timestranscript.canadaeast.com/newstoday/article/329416
http://canadianpress.google.com/article/ALeqM5hM0zeYRJKc_mp6Lk1JVDqVLIdwSA
http://www.barrieadvance.com/barrieadvance/article/108266
radical sapphoq says: What stupidity! The "for entertainment only" psychic prompted this whole thing. And as almost always, it is the kids who suffer. Victoria was in a self-contained classroom with five other kids. She is non-verbal, entering puberty, lacks inhibitions. The principal interpreted licking a table and gyrating against staff bodies as being indicative of sexual abuse. Some people don't have the sense they were born with.
The psychic should be prosecuted as being fraudulent, the teacher's aide should be fired, and Victoria should be going to school somewhere.
Showing posts with label Autism Speaks. Show all posts
Showing posts with label Autism Speaks. Show all posts
Friday, June 20, 2008
Friday, June 13, 2008
Alex Barton, Asperger's and General Public MisEducation
The family of Alex Barton, the little Aspergian misbehaving five year old kindergardener, has decided to sue the school district for his treatment by teacher Wendy Portillo. It is reported that although he enjoyed talking on television, Alex is still evidencing signs of trauma. An attorney from the Liberty Legal Institute's Dallas branch office states that the suit is not without merit. Public opinion as expressed at the end of another article-- published by the T.C. Palm on June 7, 2008 range from "Oh noes Alex will have to goto court and that sucks," to "Give 'em a buck and be done with it," to "Yup, there is a case there." The blog Thinking in Metaphors over at
http://autisticnation.typepad.com/thinking_in_metaphors/2008/05/wendy-portillos/
comments/page/2/ is the place to go for a better understanding of the legal issues involved.
Autism, along with many other disabilities, continue to be misunderstood by the general public. Now I know that the general public does not have to understand every disability. But kids in a regular classroom should have the benefit of some accurate information. The real bother of the whole thing is that while "inclusive education" is the current buzzword, kids in general are not given any explanations about the conditions and disorders that may be effecting a few of their classmates. Thus a good friend of mine was left recently to explain Tourette's to his nine year old son. Nine year old was accused of not demonstrating an, uh, inclusive attitude because he had yelled "shut up" when a classmate kept cursing in the classroom one day. Apparently some regulation or concern about private medical information prevented the teacher from offering any useful information. The same reg or concern prompted the teacher to claim (erroneously in my estimation) that my friend did not have a right to explain Tourette's to his son either. Talk about insanity. If kids cannot talk about their differences, how are they ever going to come to an understanding of those differences? In my estimation, "Don't ask, don't tell" does not work when it comes to building community.
Now we have a teacher who decided to have a bunch of five year olds tell another five year old what they don't like about him or his behavior. Uncool for any child to have to go through. That teacher needs to find a different line of work. And in light of the lawsuit, the Florida school system would do well to inservice all of its' teachers on autistic spectrum disorder. Autism is indeed a broad spectrum of disorders. The three that illustrate a wide range of intellectual prowess and behavioral manifestations are classic (Kanner's) autism, Asperger's, and pervasive developmental disorder not otherwise specified (P.D.D.-nos). [There are two other disorders included in the spectrum which probably should be moved to a different category.] Having been forced to sit through a few "sensitivity training sessions" myself, my own prejudice is that they don't do much. I still hold that the information should be offered to teachers as well as to the students and their parents. It is at least a beginning. Furthermore, any teacher who works in an inclusive classroom ought to be dually certified-- in special education as well as in elementary or secondary education (or whatever their primary field is).
The general assumption that "all people with autism" are screaming self-stimming innocents and perpetual children is one that I personally am a bit tired of dealing with. Just last night on secondlife dot com, my avatar tried to explain to someone who was annoyed with my adopted cousin's verbal behavior that yes indeed Aspergians can be verbally obnoxious just like anybody else. The avatar to whom this short explanation was directed had protested, "He doesn't have autism! Autistics don't provoke people." Interesting how any of us can suddenly know more than the neuropsych people who have spent years in testing and observation and diagnosing of a variety of disorders and conditions.
Autism in all of its' manifestations is not something that needs curing as the Autism Squeaks parents would have us believe. Nor is it something that should be celebrated in all of its' aspects. If the Aspergian bank teller wishes to keep his job, he needs to attend to matters of personal hygiene just like the rest of us. An autistic adult who is not able to communicate her basic needs or desires certainly has a tough life journey that not many of us would envy or want to emulate. Similar things could be said of any disabling condition or disorder. There was a time when I thought that traumatic brain injury was the worst thing that could happen to me. Then it did happen through the actions of a driver who really should not have gotten stoned before getting behind the wheel of his automobile. Traumatic brain injury is not the worst thing. And autism is not truly the thing that needs curing. The worst thing is ignorance and it is ignorance that needs healing.
radical sapphoq
References:
http://www.typepad.com/t/trackback/2980678/29447288
http://www.tcpalm.com/news/2008/jun/07/alex-barton-family-plans-to-sue/
http://www.sun-sentinel.com/news/local/southflorida/sfl-0612autisticboy,0,5446826.story
http://www.libertylegal.org/
http://autisticnation.typepad.com/thinking_in_metaphors/2008/05/wendy-portillos/
comments/page/2/ is the place to go for a better understanding of the legal issues involved.
Autism, along with many other disabilities, continue to be misunderstood by the general public. Now I know that the general public does not have to understand every disability. But kids in a regular classroom should have the benefit of some accurate information. The real bother of the whole thing is that while "inclusive education" is the current buzzword, kids in general are not given any explanations about the conditions and disorders that may be effecting a few of their classmates. Thus a good friend of mine was left recently to explain Tourette's to his nine year old son. Nine year old was accused of not demonstrating an, uh, inclusive attitude because he had yelled "shut up" when a classmate kept cursing in the classroom one day. Apparently some regulation or concern about private medical information prevented the teacher from offering any useful information. The same reg or concern prompted the teacher to claim (erroneously in my estimation) that my friend did not have a right to explain Tourette's to his son either. Talk about insanity. If kids cannot talk about their differences, how are they ever going to come to an understanding of those differences? In my estimation, "Don't ask, don't tell" does not work when it comes to building community.
Now we have a teacher who decided to have a bunch of five year olds tell another five year old what they don't like about him or his behavior. Uncool for any child to have to go through. That teacher needs to find a different line of work. And in light of the lawsuit, the Florida school system would do well to inservice all of its' teachers on autistic spectrum disorder. Autism is indeed a broad spectrum of disorders. The three that illustrate a wide range of intellectual prowess and behavioral manifestations are classic (Kanner's) autism, Asperger's, and pervasive developmental disorder not otherwise specified (P.D.D.-nos). [There are two other disorders included in the spectrum which probably should be moved to a different category.] Having been forced to sit through a few "sensitivity training sessions" myself, my own prejudice is that they don't do much. I still hold that the information should be offered to teachers as well as to the students and their parents. It is at least a beginning. Furthermore, any teacher who works in an inclusive classroom ought to be dually certified-- in special education as well as in elementary or secondary education (or whatever their primary field is).
The general assumption that "all people with autism" are screaming self-stimming innocents and perpetual children is one that I personally am a bit tired of dealing with. Just last night on secondlife dot com, my avatar tried to explain to someone who was annoyed with my adopted cousin's verbal behavior that yes indeed Aspergians can be verbally obnoxious just like anybody else. The avatar to whom this short explanation was directed had protested, "He doesn't have autism! Autistics don't provoke people." Interesting how any of us can suddenly know more than the neuropsych people who have spent years in testing and observation and diagnosing of a variety of disorders and conditions.
Autism in all of its' manifestations is not something that needs curing as the Autism Squeaks parents would have us believe. Nor is it something that should be celebrated in all of its' aspects. If the Aspergian bank teller wishes to keep his job, he needs to attend to matters of personal hygiene just like the rest of us. An autistic adult who is not able to communicate her basic needs or desires certainly has a tough life journey that not many of us would envy or want to emulate. Similar things could be said of any disabling condition or disorder. There was a time when I thought that traumatic brain injury was the worst thing that could happen to me. Then it did happen through the actions of a driver who really should not have gotten stoned before getting behind the wheel of his automobile. Traumatic brain injury is not the worst thing. And autism is not truly the thing that needs curing. The worst thing is ignorance and it is ignorance that needs healing.
radical sapphoq
References:
http://www.typepad.com/t/trackback/2980678/29447288
http://www.tcpalm.com/news/2008/jun/07/alex-barton-family-plans-to-sue/
http://www.sun-sentinel.com/news/local/southflorida/sfl-0612autisticboy,0,5446826.story
http://www.libertylegal.org/
Thursday, February 14, 2008
Autistic Kids Grow Up...
Christopher DeGroot had autism. Because he reportedly would bolt from the apartment that he lived in with his parents Nicolaas and Agnes, they locked the windows and doors. Because they needed to go do things like feed their horses without their son, they left him alone in the apartment which was secured against his escape into traffic. Their 19 year old son who had severe autism was left alone in
their apartment for several hours a day so they could go do chores. In my opinion,
leaving a severely disabled man alone in an apartment without supervision is wrong
on so many levels. Even if Christopher DeGroot possessed the knowledge of what to
do during an emergency, the deadbolt on the door and the locks on the windows precluded any means to get out. And if he was unable to act during an emergency on
his own behalf due to his disabling condition, he should have had a (hired if necessary) caretaker supervising him in his parents' absence.
On Sunday May 14th, 2006 the apartment did indeed catch on fire. Two family cats were saved. One firefighter was injured. 77K of damage was caused to the apartment building and stuff inside of it. Christopher, then 19, had to be airlifted to a hospital in Portland, Oregon. The burns covered 80% of his body. He died on Friday May 19th, 2006.
Nicolaas and Agnes reported to the police station as requested for questioning. They were charged with first-degree arson and first- or second-degree manslaughter. (Report of the manslaughter charges differ in degree). The fire was thought to be caused by arson, specifically by Nicolaas and Agnes DeGroot setting fire to paper in the middle of the living room floor and then leaving their son to burn while they left to feed the bloody horses.
Yeah, they had their day in court where they (via separate attorneys) were allowed to Alford plea the charges. An Alford plea means that the defendants admit that the State can prove its' case against them, but falls short of admitting any guilt on the part of the defendants. The original charges were pled down to criminal negligent homicide.
Two people testified that Nicolaas and Agnes De Groot were cool and devoted parents. Nice to their autistic son, caring about his needs, blah blah blah. The judge decided that the parents did not intend any bad vibes when they left their severely autistic son alone in the apartment without any supervision. He sentenced Nicolaas and Agnes DeGroot to six months in the county jail.
This is a case that in my opinion should never have been allowed to be Alford plea'd.
Autistic kids do grow up to be autistic adults unless their uh devoted parents kill them.
spike
Parents charged with first-degree arson and first- or second-degree manslaughter:
http://democratherald.com/articles/2006/0
http://www.cityofalbany.net/services/new
Alford pleas and a sentence to six month in the county jail:
http://www.dhonline.com/articles/2008/02/0
Christopher DeGroot
autism
manslaughterTuesday, February 05, 2008
Good Mourning Stupor Tuesday
Teens used to be given ice pick lobotomies. I once knew an old man. He was given one back in the day. He was a rebellious teen. Among other "horrid" transgressions, he smoked cigarettes. He still does. Years wasted on the back wards. Oh bloody hell. Shove him into a group home. The food is better there at least. Here's some more pills. We don't know if you truly would have needed them as an adolescent but you sure do need them now.
Every label is a catch-all. So the labels will keep devolving.
Briefly the nation mourns the fall of another pop icon star into the throes of mania. Dressing without underwear is grounds for psychiatric imprisonment even of the the rich and infamous. I feel badly for her doggies. I weigh in on the side of animal welfare, not animal rights. I detest PETA and their dog houses for wolves campaign over at Penn's Caves. Evolution, anyone? The wolves came first. They didn't want the dog houses that you forced the owners of Penn's Caves to airlift/drop in. They pissed all over them and tore them up. And went back to their dens which they had carved out of the side of the mountain that is theirs. We have forgotten how to live. My feet have forgotten how to feel the nuances of bare uneven ground. The cane leans against the wall of a hallway. I force my feet to feel. I never gave a damn about the supposed window of improvement after a traumatic brain injury. There are no bars on my windows. Somewhere in a locked ward, a pop star is forced to put on underwear daily. Compliance has its' own rewards. If she is proper and placating and fawning, she may get to pick today's movie. If she becomes invested in the goals you have set up for her, she may get out in ten days.
Devolving from dogs to wolves, from dog houses to dens.
Neuroleptics have helped people to become productive members of society. Some folks who weren't able to work, who were plagued by hallucinations and or other rotten malfunctions of their neurology are now able to work. A few even manage to hold down real jobs, not the legalized poverty of sub-waged existence found in the sheltered workshops or T-projects. "It's better than staying home," the salaried proponents of The System retort. Oh yeah. Warehousing the different is good because society is judged by outward appearances. Shove the disabled out of sight. We the forgotten people-- fat people, people who hallucinate, curse too much, limp, are missing limbs, don't wear proper white cotton underwear, aren't properly happy about our situations-- don't deserve to have a voice. So a charity made up of parents sues an autistic teen for daring to mock it with her own website. These parents think they can speak for us who endure their sterilized tandrums. Some folks get diabetes or T.D. from the wonder drugs. Hard to tell. To weigh the good against the bad. For some folks with frucked neurology, the drugs are very very necessary. For the rest-- bright shiny pills with their empty promises of happiness. It's not happiness that the world needs now. And it's not love. And it's not bunches of parents coming out with bright shiny videos about how we have frucked up the family finances and broken their hearts. If only there was a cure for ignorance. For all of our shiny packaged advancements, we still can't figure out how to live together on this planet without blowing each other up into smithereens.
From grappling with tough stuff to neuropathy and smart bombs.
We need more research. More development. Psych drugs with better profiles, less side effects. The same care taken for psych drugs in clinical trials as is taken for all the others. The same attention to what is judged acceptable when it comes to side effects. What male teenager will greedily suck up any medicine that has "not being able to get it up" as a side effect? Only the truly insane. In the space provided below, list all of the non-psychotropics which have impotence as a side effect that we routinely administer to teens and young adults. Shrinks, first do no harm. Parents, saltpeter calms down raging hormones. Are you insane? We need to stop the guesswork. We all deserve more than that. Genetics, genomes. That is where the future of medicine lies. And once the neuro patients make room in the waiting room for the "psych" patients, we all might be better off. The N.A.M.I. mommies are WRONG. The vast preponderance of their kids do not need to be drugged. We are all wrong. Everything is neurology. Too bad the neurologists can't diagnose worth a damn.
Don't despair, repair.
My friends-locked Live Journal post about the so-called war on Christmas got flagged. Someone decided that my take on the news was an adult concept. Teens should be shielded from grappling with something that was freely available on Google news. Oh for crying out loud! I changed it back just before I put all entries save for this week's into private lockdown. SUP sanitizes the site, Aggregated feeds with advertisements and sponsored content pop into reality on the browser because sometimes we are oh so bored. We need entertainment. We are all excited now as we skate over to Explore Live Urinal. Uh, no thanks. Go sanitize your own toilet. The essay on the so-called war on Christmas can be found on other journal sites where the religious reich hasn't taken over.
I could have been great. Instead I am reduced to dead black words. I too piss on your dog houses.
spike
Every label is a catch-all. So the labels will keep devolving.
Briefly the nation mourns the fall of another pop icon star into the throes of mania. Dressing without underwear is grounds for psychiatric imprisonment even of the the rich and infamous. I feel badly for her doggies. I weigh in on the side of animal welfare, not animal rights. I detest PETA and their dog houses for wolves campaign over at Penn's Caves. Evolution, anyone? The wolves came first. They didn't want the dog houses that you forced the owners of Penn's Caves to airlift/drop in. They pissed all over them and tore them up. And went back to their dens which they had carved out of the side of the mountain that is theirs. We have forgotten how to live. My feet have forgotten how to feel the nuances of bare uneven ground. The cane leans against the wall of a hallway. I force my feet to feel. I never gave a damn about the supposed window of improvement after a traumatic brain injury. There are no bars on my windows. Somewhere in a locked ward, a pop star is forced to put on underwear daily. Compliance has its' own rewards. If she is proper and placating and fawning, she may get to pick today's movie. If she becomes invested in the goals you have set up for her, she may get out in ten days.
Devolving from dogs to wolves, from dog houses to dens.
Neuroleptics have helped people to become productive members of society. Some folks who weren't able to work, who were plagued by hallucinations and or other rotten malfunctions of their neurology are now able to work. A few even manage to hold down real jobs, not the legalized poverty of sub-waged existence found in the sheltered workshops or T-projects. "It's better than staying home," the salaried proponents of The System retort. Oh yeah. Warehousing the different is good because society is judged by outward appearances. Shove the disabled out of sight. We the forgotten people-- fat people, people who hallucinate, curse too much, limp, are missing limbs, don't wear proper white cotton underwear, aren't properly happy about our situations-- don't deserve to have a voice. So a charity made up of parents sues an autistic teen for daring to mock it with her own website. These parents think they can speak for us who endure their sterilized tandrums. Some folks get diabetes or T.D. from the wonder drugs. Hard to tell. To weigh the good against the bad. For some folks with frucked neurology, the drugs are very very necessary. For the rest-- bright shiny pills with their empty promises of happiness. It's not happiness that the world needs now. And it's not love. And it's not bunches of parents coming out with bright shiny videos about how we have frucked up the family finances and broken their hearts. If only there was a cure for ignorance. For all of our shiny packaged advancements, we still can't figure out how to live together on this planet without blowing each other up into smithereens.
From grappling with tough stuff to neuropathy and smart bombs.
We need more research. More development. Psych drugs with better profiles, less side effects. The same care taken for psych drugs in clinical trials as is taken for all the others. The same attention to what is judged acceptable when it comes to side effects. What male teenager will greedily suck up any medicine that has "not being able to get it up" as a side effect? Only the truly insane. In the space provided below, list all of the non-psychotropics which have impotence as a side effect that we routinely administer to teens and young adults. Shrinks, first do no harm. Parents, saltpeter calms down raging hormones. Are you insane? We need to stop the guesswork. We all deserve more than that. Genetics, genomes. That is where the future of medicine lies. And once the neuro patients make room in the waiting room for the "psych" patients, we all might be better off. The N.A.M.I. mommies are WRONG. The vast preponderance of their kids do not need to be drugged. We are all wrong. Everything is neurology. Too bad the neurologists can't diagnose worth a damn.
Don't despair, repair.
My friends-locked Live Journal post about the so-called war on Christmas got flagged. Someone decided that my take on the news was an adult concept. Teens should be shielded from grappling with something that was freely available on Google news. Oh for crying out loud! I changed it back just before I put all entries save for this week's into private lockdown. SUP sanitizes the site, Aggregated feeds with advertisements and sponsored content pop into reality on the browser because sometimes we are oh so bored. We need entertainment. We are all excited now as we skate over to Explore Live Urinal. Uh, no thanks. Go sanitize your own toilet. The essay on the so-called war on Christmas can be found on other journal sites where the religious reich hasn't taken over.
I could have been great. Instead I am reduced to dead black words. I too piss on your dog houses.
spike
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