(This is a ranty post, so I apologize for the negativity...)
I just heard about Autism Speaks' latest shennanigan: suing an autistic teenager for creating a parody of the Autism Speaks website.
Main story here:
http://autisticbfh.blogspot.com/2008/01/autism-speaks-silences-autistic-child.html (Autism Speaks Silences Autistic Child)
It seems that a 14 year old autistic who goes by the screen name "Kelly" started up a website called NT Speaks, which was a parody of the Autism Speaks website. It suggested that certain annoying NT behaviours might need treatment.
Autism Speaks, who claim to be working toward helping autistic people communicate and be independent, responded by having their lawyers threaten Kelly with a lawsuit! http://www.aspiesforfreedom.com/showthread.php?tid=11704
They wanted $90,000.00 for "funds lost". Once they found out that Kelly is 14, they rescinded that but put some new restrictions on the site: it would have to be hosted by Autism Speaks http://www.aspiesforfreedom.com/showthread.php?tid=11706
One 14 year old proves he or she has good communication skills and has enough independent (not to mention creative) thought to create a website that speaks against Autism Speaks. I guess they don't like independence and communication if said autistic person is not 100% supportive of them.
More can be found here: http://forums.fark.com/cgi/fark/comments.pl?IDLink=3344313
I for one wish I could have seen this website and think it is a shame that this happened. But...hope is not lost: Someone put a graphic of the site's homepage here http://www.ntspeaks.com/ and here http://www.aspiesforfreedom.com/ntspeaks/
(Here's another interesting graphic: https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgymJEYjnfWcmR6_sFuHdvU-Ha8OaeSxTQDrRGrDD7S7mq_pkKw5Ca6c4DTqXxQUm-xCY9kwO1O9jg713ELV69BkkZCGHNmBKOoRCMnJ8iHaaTl-iqMO97UVsOqlWHPgvE0DHiLsmspJg/s1600-h/IG+SPEAKS.bmp) http://aspergersquare8.blogspot.com/2007/04/adbusters-style-promotion.html
I'll be interested to see how long it takes Autism Speaks to sue...
Honestly, why are societies so surprised that many autistics don't agree with them? Why are they so hell-bent on ensuring autistics do not have any part of their operations? (Many societies will not allow autistics on their governing boards)
Would the logical solution not be to actually listen to what autistics are saying and perhaps change their approach and make it more beneficial to autistic people? (I thought autistics were the only ones that were supposed to be resistant to change, according to these experts and professionals...I'm seeing a lot more evidence toward the contrary as of late)
Perhaps that would just make too much sense? Is that the problem?
One has to ask "Just who are these societies really helping?" "Who are their target clients?"
I work in a client-centered position: my job is to help people who use the content management application that I administer. Part of my job is to provide ways to make this application easier for users by writing manuals or explaining the program to them.
Another part is forwarding client concerns and suggestions to our developers. Not all of the requests can be accommodated due to the limitations in the program, but if they can be accommodated, they are as soon as possible.
We know who our clients are. We are here to address and respond to our clients' needs in any way possible. We have client user groups who meet regularly and let us know what they like and don't like. We respond by doing what we can to make things better.
Now...looking at what these "societies" are saying, their target clients are supposed to be autistic people. They want to help autistic people be independent. They want to help autistic people communicate. They want to make life better for autistic people.
They want to help autistic people...or so they say.
So...when autistic people - their supposed target clients - communicate and show independence...these societies stop listening! Why is that?
Autistic people are pretty articulate in writing, if not in speech. They're pretty straightforward when telling people what they want, how they experience the world and what would really work well for them.
What's the problem here?
Where is the communication breakdown?
The requests and comments given by autistic people are in plain English.
Why are these people neglecting their so-called duty? Why don't they seem to get it?
If I stopped listening to my clients or did not accommodate their needs and requests, I'd be fired on the spot. I'm autistic and I understand that.
Now I hear this from parents and societies:
"My kid or client is not like these high functioning people who speak against the societies" -
Sorry...what's the difference between your kid and other autistic people? Yours smears feces? So do some of these people who type these messages. Yours doesn't talk? Some of these people don't talk either. Yours depends on others for support? So do some of these folks. Yours has trouble with social skills? Join the club!
Yes, we all have differing levels of ability, etc.
Oh, I see what the problem is...these people are adults who have opinions and actually type them out as opposed to a small child who is.... well ....a small child! How many little children can articulate this stuff?
I say this: Wait a few years, teach your kid to type and let him or her get online with other autistics. Let's see what they have to say as the years go by. You'll be surprised.
Until then, folks, why not actually put your egos aside and perhaps listen to what autistics have to say? They might have some ideas that you haven't thought of that might actually help your kid.
"But they're so angry!" you say.
Well ... wouldn't you be?
Imagine having something like diabetes and being told that you're worthless, you must be eradicated and then the professionals don't treat your diabetes appropriately? You're just forced to "act like a normal person".
Imagine being forced to deny your needs and be something you are not...just to pacify your parents who get frustrated because you are different.
Imagine being compared to cancer or having loved ones like youer parents say they'd rather you have cancer so that you would just die instead of them having to live with you being different.
Imagine constantly hearing how horrible you are on the news or the internet just because of a medical condition.
Imagine your family always treating you like you are a constant pain in their ass.
Imagine being talked about like you were not there, or having people assume that can't think or feel because you do not respond the same as everyone else.
Would you be happy?
Here's a line my ABA therapists used to use on me all the time: "How would you like it if people did that to you?"
How would you like it?
Why must we be silenced?
Who are these people really helping?
Not us apparently...
Wednesday, January 23, 2008
Sunday, January 13, 2008
On May 13, 2006 a light was extinguished in the name of curing autism
Anyone following this story knows that Karen McCarron, the doctor who killed her 3 year old autistic daughter with a trash bag on May 13th, 2006, is currently on trial for the crime. She testified on Friday and said that she knew what she did was criminal (Her words: "I have enough education to know that").
What I found interesting were some of her reasons:
So, how severe was Katie? What support did she have?
Well, for starters Karen was not poor by any stretch. Katie had a team of therapists who worked with her 40 hours a week. (You known my opinions on that, so I'll spare you) She went to a special school. She had family members who were more than willing to help...and they did. She had support a-plenty, she was not going broke, and according to Paul McCarron, Katie's father and Karen's husband, she really wasn't too severe.
From this article, http://www.pekintimes.com/articles/2008/01/10/news/news4.txt -
Paul said that Karen had been seeing a psychiatrist but had stopped taking her antidepressants a month before the murder. He also said that Karen had suggested that they put her up for adoption, to which he always replied "No way in hell. She's my daughter."
"Paul McCarron also said Katie's autism was not severe; she wasn't prone to kicking, screaming, biting or behavior sometimes associated with more severe autism cases." "
"Katie was always a well-behaved little girl," he said, adding that she was developmentally behind for her age but learned the alphabet, knew shapes and colors, and recognized various animals."
"The family had a large support group that consisted of both sets of Katie's grandparents and two hired in-home helpers who were scheduled to be with the child nearly 40 hours a week, Paul McCarron testified."
Wow. She wasn't badly behaved, had in-home support, she knew the alphabet, colours and such at the age of three - I know a lot of non-autistic, supposedly normal children who cannot do that at the age of three! She was just a bit "slower" than her peers.
Apparently, this was worth killing for!
I was like that at the age of three and I turned out ok. I'm married, live in a nice house (that we own), have a job in the IT industry, am attending university and doing all of those things that autistic people are not supposed to be able to do according to popular theory.
Now, I've read a lot of cases where parents have killed their autistic children. Why am I bothered by this one??
What bothers me so much about this case is that Katie seemed to be a lot like I was at that age. Perhaps she could be doing just as well as me, if not better, when she's 32.
The only difference was that I did not have the MMR vaccine. I was still autistic. Karen, the MMR vaccine did not make your daughter autistic. I never got it, yet I am autistic. Your daughter was autistic anyway.
You did not cause autism! A vaccine did not cause autism!
I might be dead right now too if my mother had felt this way against me and wanted to kill me.
Fortunately, my mother recognized that there are worse things out there. She also came from the UK and knew a lot more about autism. She knew that I would likely not be as "responsive" to her as my brother was. It must have hurt her to see how well I got along with my dad - I hugged him, talked to him and related to him better. My brother was more close to my mother than I was. Perhaps his love for her helped. Plus she had the support of family, just like Karen McCarron did.
I'll also add that my mother wasn't too keen on having a disabled child of any sort and confessed to me that she didn't think she could handle it. (Actually, she originally wasn't too keen on having kids at all, but she did well)
She did handle it, though. She handled it very well! Look how I turned out!
At Christmas time, my mother said something to me that I'll never forget (and I still get misty-eyed about!): "I'm so proud of you."
I asked if she was proud of the dinner I had made for the family?
"No...for everything you've done and for everything you do."
Wow. I didn't know what to do or say. I said "Aw, thanks. I owe it to you and dad, really." My mother, knowing I get a little awkward at these moments, helped me get dessert ready and we completed a nice family dinner.
Perhaps Karen McCarron might have been having a family dinner like this 29 years from now and saying the exact same words to Katie, but she cannot. She killed that chance on May 13, 2006.
Rest in peace, Katie. May you be accepted, loved and be happy wherever you are now.
The latest news story and link can be found below.
http://ap.google.com/article/ALeqM5gzi4G83F97PxaZn6ctuLeZ9l5tkwD8U453JG0
What I found interesting were some of her reasons:
- She felt guilty that she had caused Katie's autism because she had gotten her vaccinated
- Katie did not interact with her very well
- She felt like a failure
- She hoped that Katie would be "fixed" and "complete" in heaven
So, how severe was Katie? What support did she have?
Well, for starters Karen was not poor by any stretch. Katie had a team of therapists who worked with her 40 hours a week. (You known my opinions on that, so I'll spare you) She went to a special school. She had family members who were more than willing to help...and they did. She had support a-plenty, she was not going broke, and according to Paul McCarron, Katie's father and Karen's husband, she really wasn't too severe.
From this article, http://www.pekintimes.com/articles/2008/01/10/news/news4.txt -
Paul said that Karen had been seeing a psychiatrist but had stopped taking her antidepressants a month before the murder. He also said that Karen had suggested that they put her up for adoption, to which he always replied "No way in hell. She's my daughter."
"Paul McCarron also said Katie's autism was not severe; she wasn't prone to kicking, screaming, biting or behavior sometimes associated with more severe autism cases." "
"Katie was always a well-behaved little girl," he said, adding that she was developmentally behind for her age but learned the alphabet, knew shapes and colors, and recognized various animals."
"The family had a large support group that consisted of both sets of Katie's grandparents and two hired in-home helpers who were scheduled to be with the child nearly 40 hours a week, Paul McCarron testified."
Wow. She wasn't badly behaved, had in-home support, she knew the alphabet, colours and such at the age of three - I know a lot of non-autistic, supposedly normal children who cannot do that at the age of three! She was just a bit "slower" than her peers.
Apparently, this was worth killing for!
I was like that at the age of three and I turned out ok. I'm married, live in a nice house (that we own), have a job in the IT industry, am attending university and doing all of those things that autistic people are not supposed to be able to do according to popular theory.
Now, I've read a lot of cases where parents have killed their autistic children. Why am I bothered by this one??
What bothers me so much about this case is that Katie seemed to be a lot like I was at that age. Perhaps she could be doing just as well as me, if not better, when she's 32.
The only difference was that I did not have the MMR vaccine. I was still autistic. Karen, the MMR vaccine did not make your daughter autistic. I never got it, yet I am autistic. Your daughter was autistic anyway.
You did not cause autism! A vaccine did not cause autism!
I might be dead right now too if my mother had felt this way against me and wanted to kill me.
Fortunately, my mother recognized that there are worse things out there. She also came from the UK and knew a lot more about autism. She knew that I would likely not be as "responsive" to her as my brother was. It must have hurt her to see how well I got along with my dad - I hugged him, talked to him and related to him better. My brother was more close to my mother than I was. Perhaps his love for her helped. Plus she had the support of family, just like Karen McCarron did.
I'll also add that my mother wasn't too keen on having a disabled child of any sort and confessed to me that she didn't think she could handle it. (Actually, she originally wasn't too keen on having kids at all, but she did well)
She did handle it, though. She handled it very well! Look how I turned out!
At Christmas time, my mother said something to me that I'll never forget (and I still get misty-eyed about!): "I'm so proud of you."
I asked if she was proud of the dinner I had made for the family?
"No...for everything you've done and for everything you do."
Wow. I didn't know what to do or say. I said "Aw, thanks. I owe it to you and dad, really." My mother, knowing I get a little awkward at these moments, helped me get dessert ready and we completed a nice family dinner.
Perhaps Karen McCarron might have been having a family dinner like this 29 years from now and saying the exact same words to Katie, but she cannot. She killed that chance on May 13, 2006.
Rest in peace, Katie. May you be accepted, loved and be happy wherever you are now.
The latest news story and link can be found below.
http://ap.google.com/article/ALeqM5gzi4G83F97PxaZn6ctuLeZ9l5tkwD8U453JG0
Mom Confesses She Killed Autistic Child
PEKIN, Ill. (AP) — A woman accused of killing her autistic daughter testified Friday that she attempted to suffocate the 3-year-old with a pillow three days before she succeeded with a plastic garbage bag.
Karen McCarron said she couldn't go through with it using the pillow. When prosecutor Kevin Johnson asked her how long she held the bag over the toddler's head soon after, she replied about two minutes — until little Katie stopped struggling.
In a videotaped confession played in court Thursday, McCarron said she began having thoughts of hurting her daughter a year before the May 2006 slaying but put them out of her mind. On the day of the killing, though, the thoughts were stronger than ever.
"They were so intense," McCarron said.
McCarron, 39, has pleaded not guilty by reason of insanity to murder, obstructing justice and concealment of a homicidal death. She was found mentally fit to stand trial, but a medical expert hired by her attorneys has said she was insane at the time of the killing.
The trial resumes Monday.
McCarron, a former pathologist, testified she felt responsible for Katie's autism because she allowed the child to get vaccinated. Some people believe autism is caused by a mercury-containing preservative once used in childhood vaccines.
It "brought me a great deal of guilt," she said.
Using a plastic bag and the prosecutor's arm, McCarron demonstrated for jurors in Tazewell County Circuit Court how she placed a bag over her daughter's head and pushed her to her knees, the (Peoria) Journal Star and the Pekin Daily Times reported.
"Were you able to see her face as she fell to the floor?" Johnson asked.
"Yes. I could see her face through the trash bag," McCarron answered.
McCarron said she listened for a heartbeat after Katie stopped struggling.
"I just put my ear to her chest," McCarron said. "I heard one, then I heard nothing."
The child had scratch marks on her head and bite marks were found inside her mouth and on the bag as she apparently tried to free herself, according to other testimony.
The taped confession was made while McCarron was hospitalized after attempting suicide, investigators said. Wearing a hospital gown, she appears sitting on a bed next to her husband, Paul McCarron.
Karen McCarron said she killed her child hoping to "fix her" and give her peace in heaven.
"Maybe I could fix her this way, and in heaven she would be complete," she said on the tape.
Karen McCarron said on the videotape that she took her daughter's body back to her own house and put her in bed. She then went to the store, bought ice cream and returned to her mother's home to get the garbage bag because, "if things get bad, their house would be searched."
Interviewers asked McCarron if she knew what she did was criminally wrong.
"I have enough education to know that," she answered.
McCarron told police she felt like a failure because of the child's autism and was sad and hurt because the child couldn't interact with her very well.
"I loved Katie very much, but I hated the autism so, so much," McCarron said. "I hated what it was doing to her. ... I just wanted autism out of my life."
Sunday, January 6, 2008
A woman by the name of Christine posted a comment which I have not published as a comment, but decided to answer publicly here:
WOW people don't know Dr. Jerry at all. Words can't explain what he does for children with autism. You are taking his words and twisting them.
Actually , I printed the words exactly as they were written. Perhaps you should read Jenny McCarthy's book and look at what "Dr. Jerry" has written. You will see that I have printed the comment word for word. It's not just me either. Check out these blogs and videos for other responses from autistic people and parents:
http://leftbrainrightbrain.co.uk/?p=682
http://www.youtube.com/watch?v=O4zsb0tlHF0
http://wskrz.wordpress.com/2007/10/04/dear-dr-kartzinel/
http://autismdiva.blogspot.com/2007/10/jerry-kartzinel-and-lying-about-nature.html
http://bigwhitehat.com/?p=353
http://survivingmotherhood-mom26children.blogspot.com/2007/10/message-to-dr-jerry-kartzinel.html
http://tanglebones.com/articles/2007/10/07/so-very-wrong/
http://leftbrainrightbrain.co.uk/?p=663
http://www.spoems.com/video_O4zsb0tlHF0.html
http://www.kevinleitch.co.uk/wp/?p=446
Any one with a child with austism remembers the day they recieved those words and you can't tell me you jumped up and down with joy. No you went home and felt like someone ripped your guts out. [I've left the spelling errors intact]
*If* I had a child, I probably would not be too surprised or upset that he or she received a diagnosis. Why? Because I'm autistic and know that the chances of me having an autistic child are pretty high. The reason you feel like your guts have been ripped out is because of what you've heard about autism in society, in doctors offices, from autism societies and in parent groups. People make a lot of money and get a lot of sympathy for making autism out to be this horrible thing.
Perhaps you should spend more time talking to autistic people about just how "horrible" it is and just what they think of the negative PR...I think you'll find I'm not alone in my opinion.
That is what Dr. Jerry is talking about. I traveled from New York to Flordia so he could treat my son. And I would not change a thing. Dr. Jerry helped recover my son yes RECOVERED. I have never meet a Dr. with so much love for our children. It really makes me sad to see what people are saying.
I "recovered" too. Read the rest of my blog to find out what happened to me in my 20's. I got very ill and almost died because my core issues were overlooked and ignored.
I'm glad Dr. Jerry was able to help you and your son. How much did it cost you? Did you have to re-mortgage your house?
I pray he doesn't go through what I went through later on in life. I really do...
Best of luck to you and your son. And do read Jenny's book to see where I got the quotes from. Also check out the link where the interview was taken. You'll see word for word just how much "love" Dr. Jerry and his wife have for autistic children...including their own.
All the best to you and your son.
WOW people don't know Dr. Jerry at all. Words can't explain what he does for children with autism. You are taking his words and twisting them.
Actually , I printed the words exactly as they were written. Perhaps you should read Jenny McCarthy's book and look at what "Dr. Jerry" has written. You will see that I have printed the comment word for word. It's not just me either. Check out these blogs and videos for other responses from autistic people and parents:
http://leftbrainrightbrain.co.uk/?p=682
http://www.youtube.com/watch?v=O4zsb0tlHF0
http://wskrz.wordpress.com/2007/10/04/dear-dr-kartzinel/
http://autismdiva.blogspot.com/2007/10/jerry-kartzinel-and-lying-about-nature.html
http://bigwhitehat.com/?p=353
http://survivingmotherhood-mom26children.blogspot.com/2007/10/message-to-dr-jerry-kartzinel.html
http://tanglebones.com/articles/2007/10/07/so-very-wrong/
http://leftbrainrightbrain.co.uk/?p=663
http://www.spoems.com/video_O4zsb0tlHF0.html
http://www.kevinleitch.co.uk/wp/?p=446
Any one with a child with austism remembers the day they recieved those words and you can't tell me you jumped up and down with joy. No you went home and felt like someone ripped your guts out. [I've left the spelling errors intact]
*If* I had a child, I probably would not be too surprised or upset that he or she received a diagnosis. Why? Because I'm autistic and know that the chances of me having an autistic child are pretty high. The reason you feel like your guts have been ripped out is because of what you've heard about autism in society, in doctors offices, from autism societies and in parent groups. People make a lot of money and get a lot of sympathy for making autism out to be this horrible thing.
Perhaps you should spend more time talking to autistic people about just how "horrible" it is and just what they think of the negative PR...I think you'll find I'm not alone in my opinion.
That is what Dr. Jerry is talking about. I traveled from New York to Flordia so he could treat my son. And I would not change a thing. Dr. Jerry helped recover my son yes RECOVERED. I have never meet a Dr. with so much love for our children. It really makes me sad to see what people are saying.
I "recovered" too. Read the rest of my blog to find out what happened to me in my 20's. I got very ill and almost died because my core issues were overlooked and ignored.
I'm glad Dr. Jerry was able to help you and your son. How much did it cost you? Did you have to re-mortgage your house?
I pray he doesn't go through what I went through later on in life. I really do...
Best of luck to you and your son. And do read Jenny's book to see where I got the quotes from. Also check out the link where the interview was taken. You'll see word for word just how much "love" Dr. Jerry and his wife have for autistic children...including their own.
All the best to you and your son.