I'm so happy today!! I've got a new job that allows me to work the way I want to and I saw this wonderful blog post!
From Psychology Today's blog: http://www.psychologytoday.com/blog/reclaiming-childhood/200906/how-the-quack-industry-harms-autistic-children
A quote from the beginning of the blog: Dr Michael Fitzpatrick, author of Defeating Autism, recently talked to me about how raising a child with autism can be made infinitely harder - emotionally, financially and practically - by the charlatanic ‘war on autism'.
Dr Michael Fitzpatrick's Defeating Autism: A Damaging Delusion is not only a moving personal account of the challenges faced by parents of a child with autism. It is also a powerful exposé of the damaging effects of the numerous campaigns that promise to ‘defeat autism now' through various ‘biomedical' treatments, such as special diets and supplements, detoxification and medication.
Please pardon my virtual yell but... FINALLY!
It is about time that someone figured out that the negative language and tactics used by societies and professionals is damaging! Negativity in any context for anything is damaging to any cause! Why did it take so long for someone to finally see it??
If a parent sees nothing but doom and gloom and "combative" and "defeatist" language about autism, how will they react when their child gets a diagnosis of it? Negatively, of course. And what happens from there? That negativity pervades everything within the family's dynamic. And then what? Well... this site has examples of the most extreme cases: http://thiswayoflife.org/murder.html
Three examples of the negative attitudes spewed by societies and well known professionals or "advocates" in the past 2 years:
1. Dr. Jerry Kartzinel from Jenny McCarthy's book "Louder than Words: A Mother's Journey to Healing Autism": “Autism, as I see it, steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the family members, one by one..”
It's not autism that steals souls or sucks the life out of families, it's the negativity.
What blew me away was this other comment of his from the same introduction: "Autism is not a dead end diagnosis. It is the beginning of a journey into faith, hope, love, and recovery.”
So what is autism, Dr. Kartzinel? "The beginning of a journey into faith, hope, love, and recovery" or some soul sucking vampire? Make up your mind already.
2. Even PETA got involved last fall with their "Got Autism?" campaign against dairy products. A phrase from their blog: "Thankfully, there is hope. Testimonials suggest that some people with this devastating disease may be able to find relief by simply removing milk from their diet."
(See it here: http://blog.peta.org/archives/2008/09/got_autism.php)
"Devastating disease." is the phrase of the day there.
3. The Ransom Notes from the NYU Child Study Center back in December of 2007.
The one for autism said: "We have your son. We will make sure he will not be able to care for himself or interact socially for as long as he lives. This is only the beginning. Autism"
The one for Asperger Syndrome was not much better: ""We have your son. We are destroying his ability for social interaction and driving him into a life of complete isolation. It's up to you now.Asperger Syndrome"
Those speak for themselves. Luckily, there was enough of an uproar that those got scrapped!
(You've seen these here before)
We're often told that "attitude is everything in life". It's no different in this context, in my opinion. If one is going to look at something negatively, and has only the support of other negative attitudes (particularly by large societies and such... honestly!), it's not going to be a positive thing until that person changes his or her attitude and the others around him or her do too.
People whose children are diagnosed with diabetes or anything else are often told that yes, there will be challenges but that shouldn't prevent said child from living as enjoyable a life as possible. That should not prevent said child from doing the best he or she can to strive for goals and dreams.
The Down Syndrome Research Foundation has this in their vision: "We firmly believe that if people with intellectual disabilities are provided with specific and relevant educational instruction they can reach their potential. This will allow them to contribute to their community thus requiring less dependence on government resources. Without meaningful instruction and interventions, their potential is untapped and they are destined to engage in empty activities."
Notice words like "Potential"?
From the Autism Speaks page: "Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle."
What do we have here? A "Crisis"
From the Autism Foundation Canada website: "Engage, Educate, Empower and Unite people to find a cure for Autism"
"Empower", yes, but not autistic people.
When autism is the diagnosis, it's not met with the same optimism as other conditions. Sure there are challenges... and the challenges are different for each person, but does it merit the kind of "war campaign" that we often see being waged? How is that helping anyone?
No wonder parents feel so devastated. I can't blame them if that is all they see!
What if parents were told: "Your child has autism, but that doesn't mean he/she cannot be happy or live a good life. With the right attitude and support by you and the people in his/her life, your child might just amaze you. With his/her high intelligence and ability to focus, he/sheis capable of going on to do some great things in the world. All he/she needs is some positive support and ways to work with the sensory or other issues he/she might face in life so that he/she can live his/her dreams in life. There will be challenges, but together, I think we can help your child work with them."
How would a parent handle autism then? They might just be able to handle those challenges a bit better if they knew they were getting positive support and the right kids of support!
Any first year psych student can tell you how attitude affects the things we do, be it positive or negative. It has amazed me that professionals who are university educated are ignoring this very simple fact and putting such a negative spin on things related to autism.
If autism is the worst thing I'll ever have to deal with, I am thankful. There are many people in this world going through terrible and painful things like wars, poverty, terrorism, oppression, torture, nasty diseases, etc.
All I have is autism and I can deal with that.
Thursday, June 25, 2009
Thursday, June 4, 2009
Just a Thought - What if vaccines were given at a later time?
I just happened upon some articles about the correlation between vaccines and autism, something many people believe to be true.
One of the most compelling arguments I hear from parents and anti-vaccine people is that autism shows up around the same time as the vaccines - sometimes afterwards. A compelling argument, indeed, but sadly one that is not backed up by empirical evidence. Many children will exhibit signes of autism at that age, with or without vaccines. Some parents choose not to vaccinate and their kids end up autistic anyway. What then?
The big bad vaccine seems to be the MMR one. I was not given the MMR vaccine as a child because it apparently caused autism. However, I'm autistic anyway. (And am now immune to mumps because I actually got the mumps when I was about 8 - not fun, but it didn't kill me) I know of a few others who also did not get that vaccine either and are also on the spectrum. My mother thought it was the whooping cough one that did it for me, but no one else seems to be whining about that one. Also, on my dad's side of the family, there seems to be a few "eccentrics" and now some actual diagnoses of an autism spectrum disorder. In my case, it is likely a genetic thing.
Vaccines have proven to be a life saver in that they have almost eliminated some very nasty diseases such as polio, rubella, measles, etc. Diseases that killed many children in their heyday. Now that many parents are not vaccinating, these diseases are coming back. Jenny McCarthy has launched a huge campaign against vaccinations since her son supposedly became autistic after getting vaccinated. She's even said that it's ok if some diseases come back so that vaccine makers can see that they need to change their ways. I have moral issues with that.(http://www.time.com/time/health/article/0,8599,1888718,00.html)
Another interesting tidbit that the anti-vaccine movement likes to promote is that it is Thimerosal, a mercury-based preservative that is causing the problem. However, thimerosal has not been used in vaccines in the USA since 2001. (http://www.cdc.gov/vaccinesafety/concerns/thimerosal.htm)
That's eight years ago. What of children under the age of 6 right now in the US who have been diagnosed as autistic? What about those kids that age who showed signs between 18 - 24 months of age? They didn't get thimerosal, yet they are still autistic. If thimerosal was the cause, shouldn't the number of small children being diagnosed with autism have dopped since at least 2004??
If anything, more kids are being diagnosed for a varety of reasons, including broader diagnostic criteria, parents knowing what the signs are and looking into it, etc. Obviously Thimerosal is not a very likely villain here. What else is it?
This leads me to ask whether this possibility has been researched:
What if vaccines were given when a child is older than 18 - 24 months? What if vaccines were given when a child is 4 years old for instance?
Would autism still show up between 18 - 24 months as it typically does (even in children who get no vaccines)?
If vaccines were the actual cause, then autism wouldn't be showing up between 18 - 24 months of age, would it? It would show up whenever the vaccines are given.
Could this possibility be empirically researched? Yes, I think it could. I'm sure there are parents out there who did wait. Are their children autistic? Did their child still get diagnosed as autistic between 18 - 24 months, or did it show up later? What about children who were diagnosed despite not getting vaccinated?
It would take some thinking and planning, but I think it would make for a very interesting study.
Is anyone looking into this? I'd like to know. Maybe this is somethign I could do one day, many years from now...
Any thoughts?
One of the most compelling arguments I hear from parents and anti-vaccine people is that autism shows up around the same time as the vaccines - sometimes afterwards. A compelling argument, indeed, but sadly one that is not backed up by empirical evidence. Many children will exhibit signes of autism at that age, with or without vaccines. Some parents choose not to vaccinate and their kids end up autistic anyway. What then?
The big bad vaccine seems to be the MMR one. I was not given the MMR vaccine as a child because it apparently caused autism. However, I'm autistic anyway. (And am now immune to mumps because I actually got the mumps when I was about 8 - not fun, but it didn't kill me) I know of a few others who also did not get that vaccine either and are also on the spectrum. My mother thought it was the whooping cough one that did it for me, but no one else seems to be whining about that one. Also, on my dad's side of the family, there seems to be a few "eccentrics" and now some actual diagnoses of an autism spectrum disorder. In my case, it is likely a genetic thing.
Vaccines have proven to be a life saver in that they have almost eliminated some very nasty diseases such as polio, rubella, measles, etc. Diseases that killed many children in their heyday. Now that many parents are not vaccinating, these diseases are coming back. Jenny McCarthy has launched a huge campaign against vaccinations since her son supposedly became autistic after getting vaccinated. She's even said that it's ok if some diseases come back so that vaccine makers can see that they need to change their ways. I have moral issues with that.(http://www.time.com/time/health/article/0,8599,1888718,00.html)
Another interesting tidbit that the anti-vaccine movement likes to promote is that it is Thimerosal, a mercury-based preservative that is causing the problem. However, thimerosal has not been used in vaccines in the USA since 2001. (http://www.cdc.gov/vaccinesafety/concerns/thimerosal.htm)
That's eight years ago. What of children under the age of 6 right now in the US who have been diagnosed as autistic? What about those kids that age who showed signs between 18 - 24 months of age? They didn't get thimerosal, yet they are still autistic. If thimerosal was the cause, shouldn't the number of small children being diagnosed with autism have dopped since at least 2004??
If anything, more kids are being diagnosed for a varety of reasons, including broader diagnostic criteria, parents knowing what the signs are and looking into it, etc. Obviously Thimerosal is not a very likely villain here. What else is it?
This leads me to ask whether this possibility has been researched:
What if vaccines were given when a child is older than 18 - 24 months? What if vaccines were given when a child is 4 years old for instance?
Would autism still show up between 18 - 24 months as it typically does (even in children who get no vaccines)?
If vaccines were the actual cause, then autism wouldn't be showing up between 18 - 24 months of age, would it? It would show up whenever the vaccines are given.
Could this possibility be empirically researched? Yes, I think it could. I'm sure there are parents out there who did wait. Are their children autistic? Did their child still get diagnosed as autistic between 18 - 24 months, or did it show up later? What about children who were diagnosed despite not getting vaccinated?
It would take some thinking and planning, but I think it would make for a very interesting study.
Is anyone looking into this? I'd like to know. Maybe this is somethign I could do one day, many years from now...
Any thoughts?
Friday, May 22, 2009
Double Standards and The Unseen Struggle of Autistics
I recently picked up a copy of Time Magazine because of an eyecatching feature on the cover: "The Unseen Struggle of Autistic Adults".
On Page 32 is the article entitled: "How Autism Ages".
The opening paragraph: "It is estimated that 1 out of every 150 American children is living with autism. And yet little attention is paid to what happens when they grow up. A personal account of the silent struggle of adult autistics."
(If you'd like to read it: http://www.time.com/time/magazine/article/0,9171,1898322,00.html )
"Finally..." I say to myself, "an article that addresses a concern I have!"
Will this article be respectful of what it's like to grow up as an autistic in today's society? The lack of services? The terrible attitude and misconception out there about us? The struggle we have making it day to day because of lack of services, the poor attitude of the general public, etc?
Well, yes and no.
The article is a personal account written by the brother of a severely autistic man who went through Lovaas' ABA "back in the day" and didn't do too well/got worse (gee... what a surprise. None of the folks I got tormented with seemed to do too well either. Most of them are dead now.). This fellow spent years in institutions being abused and drugged to oblivion. It is a truly sad story and I feel for this family. Mostly, I feel for this autistic man whom society has essentially failed in more ways than one. I feel for all of the others whom society has failed too...and there are many others.
But, it's time to look at some of the other phrases. The ones that only perpetuate the reasons why society fails autistic people collossally.
First: "As much as I hope that all the autistic boys and girls will get better, and as much as I can encourage their families to fight with all the hope they have, I also know that they will not all recover. The boy or girl will grow up, and there won't be a miracle; instead there will be an effort, something like what my family goes through every day, to figure out what to do."
Really? We're all hopeless? We will not recover? My family will be left figuring out what to do, eh?
I grew up. I got married and bought a house and did all that stuff. Sure, I'm a rarity, but I'm not the only one who works, or advocates or writes. I'm not the only adult out there who has had to just "make it".
I wanted to make it because I got all of the right messages while I was growing up:
"There's nothing wrong with you!" (Nana)
"You can do anything you set your mind to if you're willing to work for it" (Dad)
"Anything is easier to do if you do it with a good heart" (Mum)
"You're a fighter. You fight and you get what you want. You've succeeded anyway. I'm amazed and proud. I don't think I could have done what you've done with your life." (My brother)
"I'm proud of you... for everything you've done." (both of my parents)
"You are loved" (Mum)
"Just remember: Those idiots will be coming to you for a job one day!" (Dad)
"You're the best and the brightest." (My husband)
"You're one of the most compassionate, steadfast and strong people I know." (One of my friends)
"You are amazing" (many people I've met)
"You've always found a way around things and you will succeed." (CM - one of my teachers in high school)
"You're an excellent leader. You have a way of combining compassion and meeting the bottom line that most people can't do." (My boss)
"You have a way of detaching emotionally yet still being so caring that most people can't do. You're one of our best!" (A former boss)
Yet here is the general attitude about autism. The message that is received loud and clear by autistics all over the world. The message that does not empower us or make us want to succeed:
"If recent estimates of prevalence by the Centers for Disease Control and Prevention are accurate, then 1 in 150 of today's children is autistic. That means we are in for a vast number of adult autistics —most better adjusted than Noah, some as bad off — who will be a burden to parents, siblings and, eventually, society."
Well, this adult autistic who works, pays taxes (and has been doing so for 20 years) and volunteers in the community is not impressed. This is not the attitude that society should be taking in my opinion.
Could you imagine what would happen if a blind person was described in these terms? Or a deaf person? Or a paraplegic?
The communities that advocate for them would stage an uproar and would not stop until apologies had been publicly aired and the attitude stopped. How dare anyone call a blind, deaf or paraplegic person a "burden" on society! How dare anyone call someone with diabetes or cancer a blight or burden on society! How dare anyone with Downs Syndrome, Pallister Killian syndrome, Parkinson's or Huntington's be considered a burden by the general public!
Yet it seems to be perfectly OK to consider autistic people a burden, a blight and a bane on society. It's ok to call autism a fate worse than death and it is perfectly ok for certain parents to wish their autistic children had cancer instead of autism. It's perfectly fine to abuse, torture and deny the basic human rights of autistic people because we're such a pain in society's bum (apparently)! There's no problem if one strives to find a way to eradicate autistics and prevent them from being born. Autism societies and so-called advocates actually use these terms and get away with it.
Why???
I'm sure it's not easy raising a child with muscular dystrophy or PKS or Downs Syndrome or diabetes or Huntington's or any number of the disabilities, illnesses or disorders out there.
I'm sure it's not easy raising *any* child for that matter!
So, why is it so horrible when autism is a factor? What makes it ok to abuse, belittle and demonize autistic people in the media when it is *not* ok to do that to anyone else?? Why must autism be so *devastating*?
Let's look at some very irksome and burdensome people from a tax paying autistic's point of view:
I'm not saying autism is not difficult. Nor am I saying that all autistics will be self-sufficient. We're not all the same.
I'm not trying to belittle or invalidate the struggle parents have with their autistic children. It's not a picnic.... I get that. I know my own childhood was less than fun, for me and my family.
But, there are also lots of other people out there who need help that society is not referring to as burdens. Lots of other children who are "challenging" to raise. I've mentioned them enough times in this post.
Don't forget: Some of us will grow up to be contributing members of society. Many of us already are in our own little ways from working to raising awareness on the information highway (and everything in between)!
As my dad would say, perhaps some of these so-called advocates may be come to one of us for a job one day. Perhaps that's why they don't want autistics on the Boards of Directors in autism societies and organizations? Wouldn't that just be an awkward situation? Good Lord, some autistic might actually provide some alternatives to the gloom and doom, clear up a ton of misconceptions and just mess up/force people to change the whole dynamic of autism advocacy in North America today!
Did I say the C word? (Change) Apparently, we autistics are quite adverse to this concept. However, I see many not-so-shining examples of this in the NT world too. Particularly when it comes to changing attitudes about autism.
The bottom line is this: We all, as human beings, bring something to society and we take from society too. We all have needs, strengths and struggles.
In the end, it's the double standard between autism and everything else and how they're handled that really irks me. The attitude too. It's not healthy for anyone.
Seriously. Enough already.
On Page 32 is the article entitled: "How Autism Ages".
The opening paragraph: "It is estimated that 1 out of every 150 American children is living with autism. And yet little attention is paid to what happens when they grow up. A personal account of the silent struggle of adult autistics."
(If you'd like to read it: http://www.time.com/time/magazine/article/0,9171,1898322,00.html )
"Finally..." I say to myself, "an article that addresses a concern I have!"
Will this article be respectful of what it's like to grow up as an autistic in today's society? The lack of services? The terrible attitude and misconception out there about us? The struggle we have making it day to day because of lack of services, the poor attitude of the general public, etc?
Well, yes and no.
The article is a personal account written by the brother of a severely autistic man who went through Lovaas' ABA "back in the day" and didn't do too well/got worse (gee... what a surprise. None of the folks I got tormented with seemed to do too well either. Most of them are dead now.). This fellow spent years in institutions being abused and drugged to oblivion. It is a truly sad story and I feel for this family. Mostly, I feel for this autistic man whom society has essentially failed in more ways than one. I feel for all of the others whom society has failed too...and there are many others.
But, it's time to look at some of the other phrases. The ones that only perpetuate the reasons why society fails autistic people collossally.
First: "As much as I hope that all the autistic boys and girls will get better, and as much as I can encourage their families to fight with all the hope they have, I also know that they will not all recover. The boy or girl will grow up, and there won't be a miracle; instead there will be an effort, something like what my family goes through every day, to figure out what to do."
Really? We're all hopeless? We will not recover? My family will be left figuring out what to do, eh?
I grew up. I got married and bought a house and did all that stuff. Sure, I'm a rarity, but I'm not the only one who works, or advocates or writes. I'm not the only adult out there who has had to just "make it".
I wanted to make it because I got all of the right messages while I was growing up:
"There's nothing wrong with you!" (Nana)
"You can do anything you set your mind to if you're willing to work for it" (Dad)
"Anything is easier to do if you do it with a good heart" (Mum)
"You're a fighter. You fight and you get what you want. You've succeeded anyway. I'm amazed and proud. I don't think I could have done what you've done with your life." (My brother)
"I'm proud of you... for everything you've done." (both of my parents)
"You are loved" (Mum)
"Just remember: Those idiots will be coming to you for a job one day!" (Dad)
"You're the best and the brightest." (My husband)
"You're one of the most compassionate, steadfast and strong people I know." (One of my friends)
"You are amazing" (many people I've met)
"You've always found a way around things and you will succeed." (CM - one of my teachers in high school)
"You're an excellent leader. You have a way of combining compassion and meeting the bottom line that most people can't do." (My boss)
"You have a way of detaching emotionally yet still being so caring that most people can't do. You're one of our best!" (A former boss)
Yet here is the general attitude about autism. The message that is received loud and clear by autistics all over the world. The message that does not empower us or make us want to succeed:
"If recent estimates of prevalence by the Centers for Disease Control and Prevention are accurate, then 1 in 150 of today's children is autistic. That means we are in for a vast number of adult autistics —most better adjusted than Noah, some as bad off — who will be a burden to parents, siblings and, eventually, society."
Well, this adult autistic who works, pays taxes (and has been doing so for 20 years) and volunteers in the community is not impressed. This is not the attitude that society should be taking in my opinion.
Could you imagine what would happen if a blind person was described in these terms? Or a deaf person? Or a paraplegic?
The communities that advocate for them would stage an uproar and would not stop until apologies had been publicly aired and the attitude stopped. How dare anyone call a blind, deaf or paraplegic person a "burden" on society! How dare anyone call someone with diabetes or cancer a blight or burden on society! How dare anyone with Downs Syndrome, Pallister Killian syndrome, Parkinson's or Huntington's be considered a burden by the general public!
Yet it seems to be perfectly OK to consider autistic people a burden, a blight and a bane on society. It's ok to call autism a fate worse than death and it is perfectly ok for certain parents to wish their autistic children had cancer instead of autism. It's perfectly fine to abuse, torture and deny the basic human rights of autistic people because we're such a pain in society's bum (apparently)! There's no problem if one strives to find a way to eradicate autistics and prevent them from being born. Autism societies and so-called advocates actually use these terms and get away with it.
Why???
I'm sure it's not easy raising a child with muscular dystrophy or PKS or Downs Syndrome or diabetes or Huntington's or any number of the disabilities, illnesses or disorders out there.
I'm sure it's not easy raising *any* child for that matter!
So, why is it so horrible when autism is a factor? What makes it ok to abuse, belittle and demonize autistic people in the media when it is *not* ok to do that to anyone else?? Why must autism be so *devastating*?
Let's look at some very irksome and burdensome people from a tax paying autistic's point of view:
- People who refuse to work, have lots of kids and sponge off the system ("Our Lady of the Numerous Children and Perpetually Rotating Publicity Agents" who has been in the news in the USA lately is a prime example of this!)
- People who play the system to get services or financial assistance that could be better used by people who actually need it (those people who really need it often don't get much because they don't know how to play the system, nor do they want to)
- People who charge parents of autistic children disgusting amounts of money for "therapies" that are just glorified teaching/animal training methods.
- Quacks who subject autistic people to treatments based on poor science, poor standards of ethics and poor understanding of what autism really is
- Institutions and people who work there who abuse and mistreat the autistic people in their care because of 'behaviour' - Think JRC as a big fat example of this!
- The professionals who perpetuate negative attitudes so they can scare parents into buying into their opinions and potentially expensive, dangerous or damaging methods of treatment (I'm thinking of a particular quote from a well-known American autism doctor in a certain celebrity mother's book about how autism "sucks the soul")
- So-called autism advocates who are not founding their ideas or methods on decent research and continue to spew negativity and dangerous ideas (Too many of these folks to count...)
- Societies that spin a negative message in order to make money or raise awareness. There are more positive ways of doing this, folks. Other societies for other conditions do it... perhaps you should start taking some lessons from the Down Syndrome societies - and "Celebrate Life". (Remember those ransom notes?) These really do those of us who are trying to succeed and can't get services no favours!
- Parents and caregivers who wish their kids were dead and/or actually kill their kids
- Government agencies that onyl provide services to autistics with an IQ of 75 or less or based on some other unrealistic criteria
Oy... the list goes on, but I'll stop here.
Yes, there are lots of adult autistics out there who need help, services and support. Yes, they range in level of ability and therefore their needs will range too. Yes, there will be more as those cute little autistic kids grow up. That's the way it goes.I'm not saying autism is not difficult. Nor am I saying that all autistics will be self-sufficient. We're not all the same.
I'm not trying to belittle or invalidate the struggle parents have with their autistic children. It's not a picnic.... I get that. I know my own childhood was less than fun, for me and my family.
But, there are also lots of other people out there who need help that society is not referring to as burdens. Lots of other children who are "challenging" to raise. I've mentioned them enough times in this post.
Don't forget: Some of us will grow up to be contributing members of society. Many of us already are in our own little ways from working to raising awareness on the information highway (and everything in between)!
As my dad would say, perhaps some of these so-called advocates may be come to one of us for a job one day. Perhaps that's why they don't want autistics on the Boards of Directors in autism societies and organizations? Wouldn't that just be an awkward situation? Good Lord, some autistic might actually provide some alternatives to the gloom and doom, clear up a ton of misconceptions and just mess up/force people to change the whole dynamic of autism advocacy in North America today!
Did I say the C word? (Change) Apparently, we autistics are quite adverse to this concept. However, I see many not-so-shining examples of this in the NT world too. Particularly when it comes to changing attitudes about autism.
The bottom line is this: We all, as human beings, bring something to society and we take from society too. We all have needs, strengths and struggles.
In the end, it's the double standard between autism and everything else and how they're handled that really irks me. The attitude too. It's not healthy for anyone.
Seriously. Enough already.
Thursday, April 9, 2009
A small rant about Autistics being called "Victims"
Greetings,
This is a ranty post, but one I think is fairly warranted given the article I just read (which I will post in its entirety at the end)
Interestingly enough, it was published on April 4, 2009 - the same day I was attending workshops at the Victim Services conference I was at. You know... a conference where they talk about ways to help real victims of crime, loss and tragedy.
Also interesting was that I did a speech at a conference just yesterday on this very subject!
The title of the post on alt.support.autism that started this whole mess today: AUTISM: What Happens To Victims After Parents Die? Dark Days Loom ...
(Give me a break...)
The actual title of the article: Still Overlooking Autistic Adults
(Not as bad as the sensationalist who posted it to the Newsgroup... Thank God)
The link to the article if you'd like to read it: http://www.washingtonpost.com/wp-dyn/content/article/2009/04/03/AR2009040303169.html
My response to the sensationalist on the newsgroup who calls us victims:
The following is a rant. If you don't want to see a rant, please stop reading my post now and delete it...
If you do want to see a juicy rant, please read on...
This "victim of autism" got married, moved out of her home town, bought her own house and makes good money at a full time job. This "victim of autism" has voted at every single election on all levels since she turned 18. This "victim of autism" is actively involved in her community and has written to her Member of Parliament with regards to autism related issues whenever she felt moved to do so.
This "victim of autism" is also making good money, so when her parents die, this "victim of autism" will likely be paying some overdue bills and such and arranging their funerals. This "victim of autism" also pays more in taxes than her parents do right now, so this "victim of autism" is not taking from the system, but supporting it quite well and has been doing so for the past 20 years.
This "victim of autism" does not appreciate being called a victim of autism or a burden on society because she is neither!
This "victim of autism" also realizes she's an odd duck compared to many autistics who do require certain services, but she also does not think that the constant comparisons of autistics to victims is of much help to anyone, autistic or otherwise.
How is that helping? (It's not)
Who is that helping? No one.
I've seen real victims in my volunteer work: victims of crimes, victims of tragedies and victims of catastrophes. People who have been through some truly horrible things - sudden deaths of family members, sexual assaults, robberies, kidnappings, fires, shootings, etc.
I think it is an insult to call autistics "victims" (unless they have been truly victimized by someone or some event).
I've worked with people who are dying of cancer or have been rendered disabled by accidents, brain injury or genetics. They get lots of compassion, support and I don't see *anyone* whining on about how much of a "burden" these folks are!
Honestly! Can we please get off this "victim just because one is autistic" bandwagon already?? Enough already!
My rant about the abysmal lack of appropriate services and supports for adults on the autistic spectrum, which is what this article is actually about:
It's time to stop focusing on blame and start focusing on providing the needed services to adults on the spectrum. I was at a conference yesterday and this very subject came up... transitioning to adulthood and "what next?".
I ask: Why is this such a hard thing for people to grasp? This is not exactly rocket science. Look at any other disability of a model is needed.
Why is it that society has all sorts of services for adults with other disabilities or medical conditions, but autism seems to be such a big problem?
There are lots of people out there needing help of some sort, not just autistics! What makes autism so darned different and such a flippin' hardship to society??
Why is that people can't seem to get it through their heads that autistic kids grow up to be adults who still need help?
Why do services end at 18?
Let me clarify something: Do autistics need more therapy? No.
They do need supports - cleaning, finances, etc. Yet, government officials seem to have issues wrapping this concept around their thick heads. They may even need some counseling to undo some of the damage done by the so-called therapies out there which only look at behaviours. (Another rant for another day...)
In our province, supports for adults have been a nightmare, as I'm sure it is all over the world. One has to have an IQ of under 75 here to get any kind of help. No wonder parents are worried. Like they need anything else to worry about.
People....call me naive, but should these things have not been taken into account *years* ago? Autism isn't *that* new, for Pete's sake!
What is wrong with society that this simple but very real issue has never been considered or even addressed properly like it has been for other medical conditions, etc.?
Seriously, if these so-called "autism advocates" (the non-autistic variety) expended as much energy into setting up needed services (in-home supports, cleaning, financial help...whatever the need is) for adult autistics as they do ranting and raving about vaccines and "big pharma conspiracies", we might start seeing things get done!
We might start getting some appropriate, decent and (brace yourselves) helpful services for adults!
Priorities. That's the magic word here. It's time society and these non-autistic so-called "autism advocates" started getting theirs straight. So do the governments.
The parents seem to have their priorities straight (well... most of them do). When is everyone else going to catch up?
*whew* Sorry about that, folks...
Rant over.
___________________________________________________
The article reposted here in case the Washinton Post blocks it:
Still Overlooking Autistic Adults
By Linda H. Davis
Saturday, April 4, 2009; Page A15
Question: What coming social expenditure will cost more than a third of this year's budget for the Department of Health and Human Services and be larger than the entire current budget of the Energy Department?
Answer: The bill for the tide of autistic children entering adulthood over the next 15 years, an estimated $27 billion annually in current, non-inflation-adjusted dollars by the end of that period. The number of autistic children expected to need extensive adult services by 2023 -- more than 380,000 people -- is roughly equal to the population of Minneapolis. If a town were created to house this group of people and their caregivers -- for you can't separate the two -- it would exceed the population of all but six U.S. cities. If they formed a state, it would have four electoral votes.
But most of these cognitively impaired citizens don't vote. Most of them can't live alone or work in public places. Many can't even take public transportation by themselves.
Yet as World Autism Awareness Day passed this week, with the wrecking ball swinging at all levels of social services in this devastated economy, the challenges of adult autism continue to be overlooked. Many news reports focus on whether vaccines cause autism, the need for a cure or the education of autistic children. Autistic adults are relegated to the sidelines. Even the Obama administration, which has pledged better care for disabled Americans, including those with autism, has not been specific enough about its plans for those who will probably never be able to live independently or be part of the traditional workforce. "Improving life-long services for people with ASD," as autism spectrum disorder is known, is a worryingly broad, detail-free promise in the White House agenda published online.
I understand that no one wants to look at a child and imagine the clunky, in-your-face adult he or she will become or think about the stares he or she will induce. When I look at my pudgy 22-year-old son, Randy, still sweet-faced but so obviously disabled, I cannot locate the blond cherub he used to be, gripping his stuffed brown bear. While writing this, I listened to Randy getting into the refrigerator (he's home again from his supervised job -- two mornings a week -- because of another problem with the overwhelmed human services provider funded by the Commonwealth of Massachusetts), and wonder who will love or at least protect him when he ends up in a group home run by an underpaid, overworked staff.
Randy's father and I are keeping him at home as long as possible, even as I'm battling an incurable cancer. The inadequate state services and perilously thin funding have seriously hampered our ability to work while caring for our son. I feel as though we're playing Russian roulette with Randy's future, yet I cling to my gentle son, unwilling to entrust him to a system that grows more fragile than I do.
Randy is just one of hundreds of thousands of autistic adults to whom society pays frighteningly little attention. The price of their care will affect all Americans, not only those who have autistic children. Along with housing, day programs, transportation to those programs or jobs, and higher-than-average medical costs, adults with autism require steady supervision and support. Consider: A well-behaved, relatively high-functioning person such as my son could manage in an environment that has a ratio of three clients per staff member. But many autistic people require a one-to-one ratio. This is a serious hurdle, not least because of the high turnover rate among those who provide direct care, which stems in part from their low wages. Not everyone is temperamentally suited to this work. People with autism present myriad challenges: They can sometimes be violent, sometimes are self-abusive, suffer psychological meltdowns, or behave in many socially unacceptable ways, to say the least. Women, traditionally cast in the caregiver role, are at risk of greater physical harm when caring for autistic adults than for children. At expected rates, we will need to find an additional million caregivers, people who must have the right personal qualities to work with autistic individuals but who are willing and able to work for low wages. This is no small challenge. We not only must train people but also show that we value this work by paying them better.
In 15 years, the cost of care just for the autistic children entering adulthood over that time will be about equal to the current state budget of Tennessee. Meanwhile, services are dangerously strained, and the influx of autistic adults is underway. This country urgently needs to focus on adult autism, new models of care and new sources of funding. Before the looming tidal wave delivers another crushing blow to our economy, we should have a national discussion. It should begin today.
Linda H. Davis is the author, most recently, of "Charles Addams: A Cartoonist's Life" and is president of the nonprofit SAGE Crossing Foundation, formed to create a farmstead for autistic adults. Her husband, Chuck Yanikoski, who is treasurer of SAGE, contributed to this piece.
This is a ranty post, but one I think is fairly warranted given the article I just read (which I will post in its entirety at the end)
Interestingly enough, it was published on April 4, 2009 - the same day I was attending workshops at the Victim Services conference I was at. You know... a conference where they talk about ways to help real victims of crime, loss and tragedy.
Also interesting was that I did a speech at a conference just yesterday on this very subject!
The title of the post on alt.support.autism that started this whole mess today: AUTISM: What Happens To Victims After Parents Die? Dark Days Loom ...
(Give me a break...)
The actual title of the article: Still Overlooking Autistic Adults
(Not as bad as the sensationalist who posted it to the Newsgroup... Thank God)
The link to the article if you'd like to read it: http://www.washingtonpost.com/wp-dyn/content/article/2009/04/03/AR2009040303169.html
My response to the sensationalist on the newsgroup who calls us victims:
The following is a rant. If you don't want to see a rant, please stop reading my post now and delete it...
If you do want to see a juicy rant, please read on...
This "victim of autism" got married, moved out of her home town, bought her own house and makes good money at a full time job. This "victim of autism" has voted at every single election on all levels since she turned 18. This "victim of autism" is actively involved in her community and has written to her Member of Parliament with regards to autism related issues whenever she felt moved to do so.
This "victim of autism" is also making good money, so when her parents die, this "victim of autism" will likely be paying some overdue bills and such and arranging their funerals. This "victim of autism" also pays more in taxes than her parents do right now, so this "victim of autism" is not taking from the system, but supporting it quite well and has been doing so for the past 20 years.
This "victim of autism" does not appreciate being called a victim of autism or a burden on society because she is neither!
This "victim of autism" also realizes she's an odd duck compared to many autistics who do require certain services, but she also does not think that the constant comparisons of autistics to victims is of much help to anyone, autistic or otherwise.
How is that helping? (It's not)
Who is that helping? No one.
I've seen real victims in my volunteer work: victims of crimes, victims of tragedies and victims of catastrophes. People who have been through some truly horrible things - sudden deaths of family members, sexual assaults, robberies, kidnappings, fires, shootings, etc.
I think it is an insult to call autistics "victims" (unless they have been truly victimized by someone or some event).
I've worked with people who are dying of cancer or have been rendered disabled by accidents, brain injury or genetics. They get lots of compassion, support and I don't see *anyone* whining on about how much of a "burden" these folks are!
Honestly! Can we please get off this "victim just because one is autistic" bandwagon already?? Enough already!
My rant about the abysmal lack of appropriate services and supports for adults on the autistic spectrum, which is what this article is actually about:
It's time to stop focusing on blame and start focusing on providing the needed services to adults on the spectrum. I was at a conference yesterday and this very subject came up... transitioning to adulthood and "what next?".
I ask: Why is this such a hard thing for people to grasp? This is not exactly rocket science. Look at any other disability of a model is needed.
Why is it that society has all sorts of services for adults with other disabilities or medical conditions, but autism seems to be such a big problem?
There are lots of people out there needing help of some sort, not just autistics! What makes autism so darned different and such a flippin' hardship to society??
Why is that people can't seem to get it through their heads that autistic kids grow up to be adults who still need help?
Why do services end at 18?
Let me clarify something: Do autistics need more therapy? No.
They do need supports - cleaning, finances, etc. Yet, government officials seem to have issues wrapping this concept around their thick heads. They may even need some counseling to undo some of the damage done by the so-called therapies out there which only look at behaviours. (Another rant for another day...)
In our province, supports for adults have been a nightmare, as I'm sure it is all over the world. One has to have an IQ of under 75 here to get any kind of help. No wonder parents are worried. Like they need anything else to worry about.
People....call me naive, but should these things have not been taken into account *years* ago? Autism isn't *that* new, for Pete's sake!
What is wrong with society that this simple but very real issue has never been considered or even addressed properly like it has been for other medical conditions, etc.?
Seriously, if these so-called "autism advocates" (the non-autistic variety) expended as much energy into setting up needed services (in-home supports, cleaning, financial help...whatever the need is) for adult autistics as they do ranting and raving about vaccines and "big pharma conspiracies", we might start seeing things get done!
We might start getting some appropriate, decent and (brace yourselves) helpful services for adults!
Priorities. That's the magic word here. It's time society and these non-autistic so-called "autism advocates" started getting theirs straight. So do the governments.
The parents seem to have their priorities straight (well... most of them do). When is everyone else going to catch up?
*whew* Sorry about that, folks...
Rant over.
___________________________________________________
The article reposted here in case the Washinton Post blocks it:
Still Overlooking Autistic Adults
By Linda H. Davis
Saturday, April 4, 2009; Page A15
Question: What coming social expenditure will cost more than a third of this year's budget for the Department of Health and Human Services and be larger than the entire current budget of the Energy Department?
Answer: The bill for the tide of autistic children entering adulthood over the next 15 years, an estimated $27 billion annually in current, non-inflation-adjusted dollars by the end of that period. The number of autistic children expected to need extensive adult services by 2023 -- more than 380,000 people -- is roughly equal to the population of Minneapolis. If a town were created to house this group of people and their caregivers -- for you can't separate the two -- it would exceed the population of all but six U.S. cities. If they formed a state, it would have four electoral votes.
But most of these cognitively impaired citizens don't vote. Most of them can't live alone or work in public places. Many can't even take public transportation by themselves.
Yet as World Autism Awareness Day passed this week, with the wrecking ball swinging at all levels of social services in this devastated economy, the challenges of adult autism continue to be overlooked. Many news reports focus on whether vaccines cause autism, the need for a cure or the education of autistic children. Autistic adults are relegated to the sidelines. Even the Obama administration, which has pledged better care for disabled Americans, including those with autism, has not been specific enough about its plans for those who will probably never be able to live independently or be part of the traditional workforce. "Improving life-long services for people with ASD," as autism spectrum disorder is known, is a worryingly broad, detail-free promise in the White House agenda published online.
I understand that no one wants to look at a child and imagine the clunky, in-your-face adult he or she will become or think about the stares he or she will induce. When I look at my pudgy 22-year-old son, Randy, still sweet-faced but so obviously disabled, I cannot locate the blond cherub he used to be, gripping his stuffed brown bear. While writing this, I listened to Randy getting into the refrigerator (he's home again from his supervised job -- two mornings a week -- because of another problem with the overwhelmed human services provider funded by the Commonwealth of Massachusetts), and wonder who will love or at least protect him when he ends up in a group home run by an underpaid, overworked staff.
Randy's father and I are keeping him at home as long as possible, even as I'm battling an incurable cancer. The inadequate state services and perilously thin funding have seriously hampered our ability to work while caring for our son. I feel as though we're playing Russian roulette with Randy's future, yet I cling to my gentle son, unwilling to entrust him to a system that grows more fragile than I do.
Randy is just one of hundreds of thousands of autistic adults to whom society pays frighteningly little attention. The price of their care will affect all Americans, not only those who have autistic children. Along with housing, day programs, transportation to those programs or jobs, and higher-than-average medical costs, adults with autism require steady supervision and support. Consider: A well-behaved, relatively high-functioning person such as my son could manage in an environment that has a ratio of three clients per staff member. But many autistic people require a one-to-one ratio. This is a serious hurdle, not least because of the high turnover rate among those who provide direct care, which stems in part from their low wages. Not everyone is temperamentally suited to this work. People with autism present myriad challenges: They can sometimes be violent, sometimes are self-abusive, suffer psychological meltdowns, or behave in many socially unacceptable ways, to say the least. Women, traditionally cast in the caregiver role, are at risk of greater physical harm when caring for autistic adults than for children. At expected rates, we will need to find an additional million caregivers, people who must have the right personal qualities to work with autistic individuals but who are willing and able to work for low wages. This is no small challenge. We not only must train people but also show that we value this work by paying them better.
In 15 years, the cost of care just for the autistic children entering adulthood over that time will be about equal to the current state budget of Tennessee. Meanwhile, services are dangerously strained, and the influx of autistic adults is underway. This country urgently needs to focus on adult autism, new models of care and new sources of funding. Before the looming tidal wave delivers another crushing blow to our economy, we should have a national discussion. It should begin today.
Linda H. Davis is the author, most recently, of "Charles Addams: A Cartoonist's Life" and is president of the nonprofit SAGE Crossing Foundation, formed to create a farmstead for autistic adults. Her husband, Chuck Yanikoski, who is treasurer of SAGE, contributed to this piece.
Tuesday, December 16, 2008
Got Audacity? Yes, PETA is now involved....
What does PETA (People for the Ethical Treatment of Animals) have to do with autism? Up until recently, very little.
However, they've come up with a little advertising campaign which I believe is just as bad as those darned Ransom Notes from NSU! I know this is old (September 29, 2008), but it still needs to be addressed.
Remember the "Got Milk?" advertisements? Well, PETA has made their own little ad, except it's titled "Got Autism?" http://blog.peta.org/archives/2008/09/got_autism.php
I am posting the blog entry here. It is in the public domain and I have provided the link above - I want the whole thing to be published here so one cannot say I was picking only the pieces I found offensive:
Does anyone else find this as offensive as I do?
My primary and usual reason for offense: this is just another negative advertising campaign against autism which does not do those of us on the autism spectrum any favours. It just adds more fuel to the negativity fire that is burning out there which I believe is the cause of some of the problems within families. If you're always told that your autistic child or family member is such a bad person by societies and such, you begin to believe it... and that cannot be a good thing for you, your autistic family member or anyone else for that matter!
The phrase "devastating disease" was enough to raise my blood pressure a few degrees. Can we please stop referring to autism as a devastating disease already???
I am autistic and I can think of many "devastating diseases" that I do not want (Cancer being a big one). Autism is not one of them. All in all, autism doesn't seem to be too much of a problem for me! The way it is portrayed is.
My second reason is that they only quote one case study. It's hardly what I'd call decent empirical evidence to support their claim at all. It is fallacious to just quote one anecdotal study as proof of a theory. I'd need to see more credible references than that.
I will give it credit for being slightly better than one person who once tried to convince me that mercury was the cause of autism by referencing an article in Rolling Stone magazine!
My last entry advised that we should choose our battles wisely. PETA has always carried a reputation for being extreme and somewhat offensive in their past campaigns and I usually just ignore them, but this one struck me personally.
Being the person I am, I wrote a letter of complaint and left it on their blog's comment board. It has to be approved by the moderator, so I doubt it will actually be published. But published it shall be - right here on my blog!
However, they've come up with a little advertising campaign which I believe is just as bad as those darned Ransom Notes from NSU! I know this is old (September 29, 2008), but it still needs to be addressed.
Remember the "Got Milk?" advertisements? Well, PETA has made their own little ad, except it's titled "Got Autism?" http://blog.peta.org/archives/2008/09/got_autism.php
I am posting the blog entry here. It is in the public domain and I have provided the link above - I want the whole thing to be published here so one cannot say I was picking only the pieces I found offensive:
Parents, heads up. Recent studies have suggested a link between dairy consumption and autism. Since many people don't know this, PETA is planning to run a billboard in Newark, New Jersey. Even though it won't please the billion-dollar dairy industry, parents have a right to know the truth about milk.
 |
In a study at the University of Rome, researchers noticed a "marked improvement" in the behavior of autistic children who were taken off dairy products, but how dairy might worsen or cause autism is still unclear. Some suspect that casein (a component of cow's milk) harms the brain, while others suggest that stomach problems that are often caused by dairy products cause distress and thus worsen behavior in autistic children.
Not so surprising, considering that milk has already been strongly linked to Crohn's disease, certain types of cancer, and other serious health problems. But I digress.
Thankfully, there is hope. Testimonials suggest that some people with this devastating disease may be able to find relief by simply removing milk from their diet.
There's a whole world of information out there for parents and for women who are pregnant or nursing about how to raise their kids dairy-free. Be an informed consumer and check it out!*The Newark area had the highest rates of autism occurrence among 14 states studied in one report.
Does anyone else find this as offensive as I do?
My primary and usual reason for offense: this is just another negative advertising campaign against autism which does not do those of us on the autism spectrum any favours. It just adds more fuel to the negativity fire that is burning out there which I believe is the cause of some of the problems within families. If you're always told that your autistic child or family member is such a bad person by societies and such, you begin to believe it... and that cannot be a good thing for you, your autistic family member or anyone else for that matter!
The phrase "devastating disease" was enough to raise my blood pressure a few degrees. Can we please stop referring to autism as a devastating disease already???
I am autistic and I can think of many "devastating diseases" that I do not want (Cancer being a big one). Autism is not one of them. All in all, autism doesn't seem to be too much of a problem for me! The way it is portrayed is.
My second reason is that they only quote one case study. It's hardly what I'd call decent empirical evidence to support their claim at all. It is fallacious to just quote one anecdotal study as proof of a theory. I'd need to see more credible references than that.
I will give it credit for being slightly better than one person who once tried to convince me that mercury was the cause of autism by referencing an article in Rolling Stone magazine!
My last entry advised that we should choose our battles wisely. PETA has always carried a reputation for being extreme and somewhat offensive in their past campaigns and I usually just ignore them, but this one struck me personally.
Being the person I am, I wrote a letter of complaint and left it on their blog's comment board. It has to be approved by the moderator, so I doubt it will actually be published. But published it shall be - right here on my blog!
As a person on the autism spectrum, I find this ad to be in very poor taste and offensive. My reason? There is too much negative press out there about autism without this sort of advertising campaign. Does PETA really need to lower themselves to this level to promote going vegan?
I cannot drink milk because I am lactose intolerant (I'm vegetarian too because I cannot digest meat either). Many non-autistic people are lactose intolerant too!
Does the self-esteem of many autistic people need to be further lowered by this sort of advertising? It's bad enough that the autism societies do it!
It's bad enough that we're commonly associated with terror levels, tragedies, bird-flu (yes, I have seen this association), and being soul sucking family-destroyers. We have to live with negative stigma like this every day of our lives.
Does this sort of thing help those of us who work and try to make a daily living with co-workers who only see negative press about autism? I have to hide the fact that I am autistic thanks to this sort of thing.
I'm not against decent research or finding ways to make our lives easier. This, however, does not make being autistic any easier.
I respectfully ask that you please stop contributing to this problem of negative press against autistic people by taking us off your target list. Thank you.
Sunday, October 26, 2008
Choose your battles Wisely, Folks
This just in:
(My apologies for the all-caps in the following press release, folks... I did not write this and I didn't feel like retyping it either, so I've put it in small font. Please also forgive the title of Denis Leary's book being incorrectly typed.)
For Immediate Release............. contact Sid Schwartz 212-564-4692
NATIONWIDE AUTISM PROTEST AGAINST DENNIS LEARY BY NYC GROUP
www.autismunited.org
CONTACT SID SCHWARTZ
646-896-1128
Looking at this press release and the autism lists lately, it seems that Denis Leary has said something offensive...
"OMG!! Denis Leary?? Say something offensive about something?? Not Denis! Naaaahhhh, he's a paragon of decency! A proud upholder of diplomatic virtue! The man who could charm the robe off of Ghandi for Pete's sake!!"
Get real, folks. This is Denis Leary, the man who has built a very lucrative career on insulting many, many people, groups and concepts over the years!
What the heck am I talking about, you may ask?
Denis Leary wrote a comedy book called "Why We Suck: A Feel-Good Guide to Staying Fat, Loud, Lazy and Stupid,"... where he insults just about everyone on the planet. (You know... I'm truly surprised the Catholic Church hasn't put up larger protests against him since he rails against Catholicism a *lot*! And he's really nasty about it too...)
This must be the book he referred to in No Cure for Cancer when he said he's going to write a book called "Shut the F*** Up: A revolutionary new form of therapy" by "Dr. Denis Leary".
The problem is: He happened to insult the boom in autism diagnoses... and parents and shrinks along with it.
"There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don't give a [bleep] what these crackerjack whack jobs tell you - yer kid is NOT autistic. He's just stupid. Or lazy. Or both."
Apparently "Autism Schmautism" (the title of the chapter) is one of his favourites according to the Vanity Fair interview which you can read here: http://www.vanityfair.com/culture/features/2008/11/wayne_leary200811
Granted, I'm not fond of the notion that autistics are just lazy or stupid. Most of us on the spectrum are not even close to stupid! Quite the opposite in fact... yet so many of us are treated that way because of common opinion (provided by professionals and agencies) which only serve to drive opinions like Leary's!
You know what's kind of funny about all of this?
The same thing was being said about ADD (Attention Deficit Disorder) in the 90's. Remember all the kids being put on ritalin back then? Folks back then said those ADD kids were just lazy, stupid and undisciplined by inattentive parents! Remember that?
But how many really had ADD? Seriously?
If the kids were misbehaving, it was ADD, according to the professionals and doctors who stood to make a little money on the sales of ritalin. Not the fact that schools were dumbed down, that authority over children was taken away from parents and teachers because their kids could sue, the fact that video games and TV shows seem to accommodate a shorter attention span, or because parenting seems to have entered a new dimension in lack of discipline and proper upbringing because of bleeding heart shrinks that think that self-esteem is more important than actual performance or behaviour. (They don't fail kids in school anymore... did you know that? 'Tis bad for the self-esteem, apparently!)
I asked myself how many kids in the 90's really had ADD or ADHD? Granted, some did. Some really did! Some still really do (my husband being one with ADD and it made his life hell until it was diagnosed when he was 43).
The same goes for autism. I ask that same question now about autism.
Is autism really on the rise or is it the "ADD of the 21st Century"? I've met a number of parents whose kids were incorrectly diagnosed with autism and treated for it when it was really PTSD or some other type of issue.
Before anyone slams me for being insensitive, here are some more questions to ponder which may examine the prevalence in autism today:
These questions must be asked, in my opinion.
Back to Denis Leary for a moment: He also used to make jokes about all of those whiners who are unhappy because their lives didn't turn out the way they wanted them to. Remember "Life sucks, get a f***ing helmet!" from No Cure for Cancer? (Stemming again from trends in the "Neurotic Nineties")
Just so you know... autism isn't the only thing being slammed in the book. Obama, Renee Zellweger, nuns... they're all being insulted here! He also says that “we need to take Rush Limbaugh’s head and make a bong out of it”"
Wow. That's pretty deep, man...
"Why We Suck" - kind of gives you a preview of what type of book we're looking at, folks, doesn't it? This is not exactly influential, ground-breaking, PhD material we're looking at. I don't really see this as being something that is going to change the way the world thinks about things.
Not like the failed NYU "Ransom Letters" Campaign, or the demeaning comments made about autism by societies and parents in the media every single day.
For instance, Autism Ontario has a new campaign out called "Forgotten" where they're putting out the message that "Children with autism grow up to be adults with autism". (Kind of like "baby rats become big, adult, disease carrying rats" in my mind) I have my own opinion on this negative slant of trying to draw attention to autistic adults who need services. I'm much more in line with the National Autistic Society's "Think Differently About Autism" campaign in the UK...it's positive, something North American autism societies could really stand to learn from! There's even a video called The Most Beautiful Child which tries hard to be positive at first, but gets nice and negative by the end...
Now we ASD adults get to deal with that stigma too. Looks like I'll still be hiding the fact that I'm on the spectrum from employers or some time yet!
These are things that deserve protests by advocates in my opinions.
Why don't we protest to stop people like Denis Leary from making such nasty comments about autism by stopping the gloom-and-doom rhetoric spewed out by "authorities" on the subject?
Where are all those mad dog protesters?
Where are those so-called "advocates"?
Come on, people... let's advocate *for autistic people* already and get this doom and gloom stopped once and for all! Let's stop making autstics look like an evil blight on society already...
Oh wait... they're the ones who tend to be making those statements! Whoops! My bad. Sorry about that...
I believe that if these folks were to put their amazingly high amounts of energy into accepting their children and learning how to actually communicate with and benefit their children in the long term, their kids might be better off. So might they. Perhaps autism in their lives wouldn't have to be this horrible thing that they have to keep fighting against but something they could be working with to create a brighter and more positive future for their children.
How is mad-dog protesting against offensive comedians (or even radio talk show hosts) *really* helping their kids?
Let's go a little deeper, shall we?
If we want to pick bones about offensive comments against autistics in books, I found Jerry Kartzinel's comments in Jenny McCarthy's book pretty offensive, actually.
You might remember this phrase: "autism steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the family members, one by one" in the intro). I ranted about that already in this blog, so I'll keep this short.
That, to me, was way more offensive than anything Dennis Leary could joke about in a book where he openly insults lots of groups and people for laughs!
Choose your battles wisely, folks.
That's all I'm saying here.
Just my thoughts, of course...
(My apologies for the all-caps in the following press release, folks... I did not write this and I didn't feel like retyping it either, so I've put it in small font. Please also forgive the title of Denis Leary's book being incorrectly typed.)
For Immediate Release............. contact Sid Schwartz 212-564-4692
NATIONWIDE AUTISM PROTEST AGAINST DENNIS LEARY BY NYC GROUP
NEW YORK NY. EVELYN AIN PRESIDENT OF AUTISM UNITED , A NATIONAL ADVOCACY GROUP REPRESENTING OVER 5,000 PARENTS WITH CHILDREN EFFECTED WITH AUTISM IS CALLING FOR A RALLY AND PROTEST AGAINST DENNIS LEARY. WHEN HE APPEARS AT COMICS COME HOME 14, IN BOSTON AT THE AGGANIS ARENA. THE GROUP PLANS TO HAVE HUNDREDS OF PARENTS AND CHILDREN PICKETING THE CONCERT. IT IS ONE OF THE LARGEST COMEDY EVENTS IN THE USA.
THE PROTEST IS IN RESPONSE TO UPCOMING BOOK "WE SUCK"" WHICH DESCRIBES KIDS WITH AUTISM BOTH STUPID AND LAZY. THE GROUP IS CALLING FOR A BOOK BOYCOTT AND ASKING COMPANIES LIKES BARNES AND NOBLE, AMAZON, AND ANY OTHER STORE NOT TO CARRY IT AS ITS HURTFUL TO FAMILIES NATIONWIDE. ONE OUT OF 150 CHILDREN NATIONWIDE ARE DIAGNOSED WITH AUTISM.
ACCORDING TO MS. AIN '' THE AUTISM COMMUNITY IS NOT TAKING THIS AS A JOKE, IF DENNIS LEARY FEELS BY PUTTING THESE SHOCKLEY COMMENTS IN BOOK IS GOING TO CREATE HYPE, WERE GOING TO HAVE AUTISM FAMILIES FROM COAST TO COAST PROTESTING HIS APPEARANCES, SHOWING THE JOKE IS REALLY ON HIM''
www.autismunited.org
CONTACT SID SCHWARTZ
646-896-1128
Looking at this press release and the autism lists lately, it seems that Denis Leary has said something offensive...
"OMG!! Denis Leary?? Say something offensive about something?? Not Denis! Naaaahhhh, he's a paragon of decency! A proud upholder of diplomatic virtue! The man who could charm the robe off of Ghandi for Pete's sake!!"
Get real, folks. This is Denis Leary, the man who has built a very lucrative career on insulting many, many people, groups and concepts over the years!
What the heck am I talking about, you may ask?
Denis Leary wrote a comedy book called "Why We Suck: A Feel-Good Guide to Staying Fat, Loud, Lazy and Stupid,"... where he insults just about everyone on the planet. (You know... I'm truly surprised the Catholic Church hasn't put up larger protests against him since he rails against Catholicism a *lot*! And he's really nasty about it too...)
This must be the book he referred to in No Cure for Cancer when he said he's going to write a book called "Shut the F*** Up: A revolutionary new form of therapy" by "Dr. Denis Leary".
The problem is: He happened to insult the boom in autism diagnoses... and parents and shrinks along with it.
"There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don't give a [bleep] what these crackerjack whack jobs tell you - yer kid is NOT autistic. He's just stupid. Or lazy. Or both."
Apparently "Autism Schmautism" (the title of the chapter) is one of his favourites according to the Vanity Fair interview which you can read here: http://www.vanityfair.com/culture/features/2008/11/wayne_leary200811
Granted, I'm not fond of the notion that autistics are just lazy or stupid. Most of us on the spectrum are not even close to stupid! Quite the opposite in fact... yet so many of us are treated that way because of common opinion (provided by professionals and agencies) which only serve to drive opinions like Leary's!
You know what's kind of funny about all of this?
The same thing was being said about ADD (Attention Deficit Disorder) in the 90's. Remember all the kids being put on ritalin back then? Folks back then said those ADD kids were just lazy, stupid and undisciplined by inattentive parents! Remember that?
But how many really had ADD? Seriously?
If the kids were misbehaving, it was ADD, according to the professionals and doctors who stood to make a little money on the sales of ritalin. Not the fact that schools were dumbed down, that authority over children was taken away from parents and teachers because their kids could sue, the fact that video games and TV shows seem to accommodate a shorter attention span, or because parenting seems to have entered a new dimension in lack of discipline and proper upbringing because of bleeding heart shrinks that think that self-esteem is more important than actual performance or behaviour. (They don't fail kids in school anymore... did you know that? 'Tis bad for the self-esteem, apparently!)
I asked myself how many kids in the 90's really had ADD or ADHD? Granted, some did. Some really did! Some still really do (my husband being one with ADD and it made his life hell until it was diagnosed when he was 43).
The same goes for autism. I ask that same question now about autism.
Is autism really on the rise or is it the "ADD of the 21st Century"? I've met a number of parents whose kids were incorrectly diagnosed with autism and treated for it when it was really PTSD or some other type of issue.
Before anyone slams me for being insensitive, here are some more questions to ponder which may examine the prevalence in autism today:
- Perhaps autism has always been somewhat prevalent but never diagnosed because not enough was known about it? If the adults who attend my monthly meetup are any indication, there are a lot of adults out there who are on the spectrum but were never diagnosed, but are seeking that diagnosis now! Every month someone comes in asking where they can pursue a diagnosis. The problem is, no one wants to diagnose adults with this.
- I look at Leo Kanner's original paper on autism and see how he mentions that the parents of his subjects were very brilliant but aloof and a little odd. Could it be that those parents were on the spectrum too?
- Could society have been more accommodating of these differences at one point but the vast changes in societal expectations have changed enough that these "different" characteristics are now abnormalities? Perhaps even disabilities?
- Is autism really so common? Has it always been?
These questions must be asked, in my opinion.
Back to Denis Leary for a moment: He also used to make jokes about all of those whiners who are unhappy because their lives didn't turn out the way they wanted them to. Remember "Life sucks, get a f***ing helmet!" from No Cure for Cancer? (Stemming again from trends in the "Neurotic Nineties")
Just so you know... autism isn't the only thing being slammed in the book. Obama, Renee Zellweger, nuns... they're all being insulted here! He also says that “we need to take Rush Limbaugh’s head and make a bong out of it”"
Wow. That's pretty deep, man...
"Why We Suck" - kind of gives you a preview of what type of book we're looking at, folks, doesn't it? This is not exactly influential, ground-breaking, PhD material we're looking at. I don't really see this as being something that is going to change the way the world thinks about things.
Not like the failed NYU "Ransom Letters" Campaign, or the demeaning comments made about autism by societies and parents in the media every single day.
For instance, Autism Ontario has a new campaign out called "Forgotten" where they're putting out the message that "Children with autism grow up to be adults with autism". (Kind of like "baby rats become big, adult, disease carrying rats" in my mind) I have my own opinion on this negative slant of trying to draw attention to autistic adults who need services. I'm much more in line with the National Autistic Society's "Think Differently About Autism" campaign in the UK...it's positive, something North American autism societies could really stand to learn from! There's even a video called The Most Beautiful Child which tries hard to be positive at first, but gets nice and negative by the end...
Now we ASD adults get to deal with that stigma too. Looks like I'll still be hiding the fact that I'm on the spectrum from employers or some time yet!
These are things that deserve protests by advocates in my opinions.
Why don't we protest to stop people like Denis Leary from making such nasty comments about autism by stopping the gloom-and-doom rhetoric spewed out by "authorities" on the subject?
Where are all those mad dog protesters?
Where are those so-called "advocates"?
Come on, people... let's advocate *for autistic people* already and get this doom and gloom stopped once and for all! Let's stop making autstics look like an evil blight on society already...
Oh wait... they're the ones who tend to be making those statements! Whoops! My bad. Sorry about that...
I believe that if these folks were to put their amazingly high amounts of energy into accepting their children and learning how to actually communicate with and benefit their children in the long term, their kids might be better off. So might they. Perhaps autism in their lives wouldn't have to be this horrible thing that they have to keep fighting against but something they could be working with to create a brighter and more positive future for their children.
How is mad-dog protesting against offensive comedians (or even radio talk show hosts) *really* helping their kids?
Let's go a little deeper, shall we?
If we want to pick bones about offensive comments against autistics in books, I found Jerry Kartzinel's comments in Jenny McCarthy's book pretty offensive, actually.
You might remember this phrase: "autism steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the family members, one by one" in the intro). I ranted about that already in this blog, so I'll keep this short.
That, to me, was way more offensive than anything Dennis Leary could joke about in a book where he openly insults lots of groups and people for laughs!
Choose your battles wisely, folks.
That's all I'm saying here.
Just my thoughts, of course...
Tuesday, May 27, 2008
The latest in the "Emotionally scarred for life at school" department...
"You never know just how you look through other people's eyes..."
~ From the song "Pepper" by the Butthole Surfers
One thing I have always wanted to do is know exactly how other people see me. What am I to them? How do they feel about me...really? Looking at the story below, I'm wondering if it's actually a good thing that I don't know this.
Five-year-old Alex Barton of Port St. Lucie, Florida, USA got a rather harsh chance to see himself through the eyes of others last week when his teacher got all of the students in her classroom to tell Alex what they didn't like about him and then they all got to vote on whether he could stay in the class or not. He was voted out by a margin of 14 to 2. Some of the words used to describe him by the other kids were "disgusting" and "annoying". He spent the rest of the day in the nurse's office waiting for his mother to come and pick him up from the school. He won't go back there without screaming and fighting now. He is appearently reliving the incident, according to his mother; a sign of PTSD. Alex is currently in the process of being diagnosed with Asperger Syndrome.
The school district is investigating this and the State Attorney's office has dropped the case stating this doesn't meet the criteria for emotional child abuse. Where I come from, this behaviour is most definitely abusive. What does one have to do to meet the criteria for emotional child abuse in Florida? A heck of a lot worse than what this woman did, apparently. Police are also no longer investigating this.
Unfortunately, the damage is done. As any child who has ever been bullied can tell you, this is something that will be with him for the rest of his life. Perhaps some astute therapist will be able to dig this out and help him work through it when he hits adulthood.
This ordeal was put upon him as a punishment by the teacher since he has some disciplinary problems due to being on the autistic spectrum. If a child of any sort is disruptive in class, is this the appropriate way for a teacher (read: university trained professional) to handle it? I'd think not.
Many of the parents I talk to say they put their autistic children into school because they feel that school is the best place to learn social skills.
Really? Social skills seems to be a big priority for people when it comes to educating autistic kids. Are these the kind of social skills that NT's have that are so needed by autistic children? Is this what they need to learn?
That's why my parents sent me to regular school. I got basically the same education as many of us on the spectrum get in conventional schools: that people are pack animals, that they are cruel and will always try to destroy that which is different from the accepted "norm".
Not many of us on the spectrum leave the school system with the silly notions that people are inherently good, that we have a positive place in the world and that we are deserving of love, happiness, success and friendship. (Yes, I am being sarcastic)
What has young Alex learned about social skills here? What has he learned about people? How do you think he might interpret this little "lesson in appropriate social skills"? How might this incident influence his future behaviour? Things learned at the age of 5 last for a long time!
Worse still: What have all of the NT children in that classroom learned from this??? That it is OK to behave this way against someone who has less of an advantage because he is different? That it is ok to emotionally tear a person apart like this when he has no one to stand up for him? How is this going to influence their behaviour in the future. Things learned at the age of 5 last for a long time!
They are learning to be bullies is what they are learning. My third grade teacher taught the kids in my classhow to bully me by calling me insulting names in front of everyone. People still called me those names well into high school.
I tried to leave a comment, but my PC at work is not java enabled, so I cannot post to the site:
I'm a 33 year old woman on the autistic spectrum (Diagnosed at 2) who went to mainstream school in Canada and got treated like this by teachers and other students on a regular basis. I recall my thrid grade teacher calling me all sorts of names in front of the other kids - names which followed me all through my school years, right up into high school. You see, these children learned that it was ok to call me these things. After all, the teacher (authority figure) did it, right?
I was held down and spit on for 30 minutes by these same kids when I was in 3rd grade. I was beaten over the head with a stick by a group of these same kids in 10th grade. This was my life every day at school.
For the first 3 years of school, I was struggling to adjust to fitting in and had my moments. This type of bullying did not help me learn how to behave nicely - it only taught me how to survive and how to fight. Disruption on my part was not common at school unless I was severely distressed. (It did happen once in awhile - I was not perfect!) Usually, I was able to save my meltdowns for when I got home and got to my room. Now, I'm happily married, I own my own house, drive, have been working since I was 13 and am pursuing a degree in psychology. I pay my dues to society every day through my paid work and my volunteer work.
For those who think autistics are retarded, I could read far better than any of the other children (I was reading novels at 3) and have an IQ of 134. (Mental retardation is loosely defined as being an IQ under 75) This is not to say that *all* autistics have IQ's this high or have the abilities that I do. I'm pretty lucky in that respect.
This sort of thing, when it happens, is a strong influence which affects the future behaviour of *all* children involved: the special needs child and all of the others in that classroom. Teachers have a spacial level of influence as authority figures.
My point: No child, of any level of ability, should ever have to be treated like this at school or anywhere else. No child learns anything positive from situations like this.
This teacher (read: university trained professional) handled this situation unprofessionally and inappropriately in my opinion and I believe she should be reprimanded for that. There are many more appropriate ways to petition to the school board to have an unruly child removed from a classroom.
Just my thoughts...
Here is a page from theschool that features the teachers and their email addresses: http://www.stlucie.k12.fl.us/mse/staff/kindergarten.html
In case they remove the emails, Wendy Portillo's is: portillow@stlucie.k12.fl.us
http://www.sun-sentinel.com/news/local/southflorida/sfl-flpkindergart...
http://tinyurl.com/68ggjn
Mom Says Teacher Let Classmates Vote Son Out of Class
PORT ST. LUCIE - Melissa Barton said she is considering legal action after her son's kindergarten teacher led his classmates to vote him out of class.
After each classmate was allowed to say what they didn't like about Barton's 5-year-old son, Alex, his Morningside Elementary teacher Wendy Portillo said they were going to take a vote, Barton said.
By a 14 to 2 margin, the students voted Alex -- who is in the process of being diagnosed with autism -- out of the class.
Melissa Barton filed a complaint with Morningside's school resource officer, who investigated the matter, Port St. Lucie Department spokeswoman Michelle Steele said. But the state attorney's office concluded the matter did not meet the criteria for emotional child abuse, so no criminal charges will be filed, Steele said. Port St. Lucie Police no longer are investigating, but police officials are documenting the complaint, she said.
Steele said the teacher confirmed the incident took place.
Portillo could not be reached for comment Friday.
Steele said the boy had been sent to the principal's office because of disciplinary issues. When he returned, Portillo made him go to the front of the room as a form of punishment, she said.
Barton said her son is in the process of being diagnosed with Asperger's syndrome, a type of high-functioning autism. Alex began the testing process in February at the suggestion of Morningside Principal Marcia Cully.
Children diagnosed with Asperger's often exhibit social isolation and eccentric behavior..
Alex has had disciplinary issues because of his disability, Barton said. After the family moved into the area and Alex and his sibling arrived at the school in January, Alex spent much of the time in the principal's office, she said.
He also had problems at his last school, but he did not have issues during his two years of preschool, Barton said.
School and district officials have met with Barton and her son to create an individual education plan to address his difficulties, she said. Portillo attended these meetings, Barton said.
Barton said after the vote, Portillo asked Alex how he felt.
"He said, 'I feel sad,' " Barton said.
Alex left the classroom and spent the rest of the day in the nurse's office, she said.
Barton said when she came to pick up her son at the school Wednesday, he was leaving the nurse's office.
"He was shaken up," she said.
Barton said the nurse told her to talk with Portillo, who told her what happened.
Alex hasn't been back to school since then, and Barton said he won't be returning. He starts screaming when she brings him with her to drop off his sibling at school.
Thursday night, his mother heard him saying "I'm not special" over and over.
Barton said Alex is reliving the incident.
The other students said he was "disgusting" and "annoying," Barton said.
"He was incredibly upset," Barton said. "The only friend he has ever made in his life was forced to do this."
St. Lucie School's spokeswoman Janice Karst said the district is investigating the incident, but could not make any further comment.
Vern Melvin, Department of Children and Families circuit administrator, confirmed the agency is investigating an allegation of abuse at Morningside but said he could not elaborate.
Here's a link to the school's web page:
http://www.stlucie.k12.fl.us/mse/staff/kindergarten.html
Subscribe to:
Posts (Atom)