One day, while I was at the bookstore and fuming over yet another pity-party article about how devastating autism is to parents, I picked up a book called "A Cup of Comfort for Parents of Children with Autism: Stories of Hope and Everyday Success", Edited by Colleen Sell, with forwards by Doug and Laurie Flutie. (Interestingly, another football player with an autistic child, who has taken more positive strides)
I flipped through it excpecting to be bombarded with stories of how defective, tragic and devastating these parents feel their children are, since this is how parents are normally portrayed in the media.
How pleasantly surprised I was when I saw that this was not the case at all!
I will tell you a bit about what I saw: One mother talked in a manner very similar to many parents when it came to her son's diagnosis. One thing she did say right of the bat was something to the tune of "I did not cry. As my son's new advocate, crying was not an option."
Later on in her article, she mentioned talking to some people who say something to the effect of someone else they know whose child has 'something wrong with them'.
It is there she asked herself "Have I been projecting that there is something wrong with my son?" At one point she even resolved to "stop trying to fix" her son. Amazingly, things got easier for her and her son after that!
Another mother told a touching story about how she used to sing her son to sleep as a baby. (She had sung professionally at one time) When he became a toddler, he'd cry and cry when she sang. As he grew older, the result was the same - he'd cry his eyes out.
Was it sensory problems? Did music bother him?
As the boy hit the pre-teen years, he loved his music and loved it *loud*! So, what was the problem with her singing....was she that bad??
She finally sat him down and asked him to take all the time he needed to tell her why he cried when she sang. After a few minutes he said "Because it is too beautiful, Mom."
I just about cried when I read that one because I will also cry when I hear a beautiful singing voice! Back in 1994, I saw Loreena McKennitt perform live and I bawled my eyes out because her voice is so beautiful.
A hilarious story is told by a mother about an Aspie and his love for the forbidden words - you know 'em...the F word and such - and how he could find a lot of words to rhyme with them! The story was about his particular interest in learning the meaning of the word "whore". There's an adventure for a parent to embark upon!
Flipping more through the pages, I read the story of a mother whose son was obsessed with snakes. She learned that if she wanted to communicate with him, she had to do it on the "snake level", meaning it had to have something to do with snakes. I was moved by the end of the article where she tucked her son into be one night and he said "Mommy, I love you more than snakes".
A father spun a tale of his adult, rap music loving son and some friends who decided to take a field trip to Hooters. He told about how well behaved they were with the waitresses and how the waitresses were charmed by these young adults on the Spectrum.
Reading the book, I was just ecstatic! (I almost flapped my hands with glee before stopping myself because I was in a public place)
None of the parents in the book hid the basic facts and challenges of raising their autistic children. No details were spared that would hide the fact that life can be difficult. Cleaning up "messes", talking about snakes, dealing with kids in the playground and school officials...it was all there.
What I liked was that all of these parents found success in adopting a positive attitude and learning to accept and work with their children on their own level. They found ways to connect with their children and found that their bonds became stronger when they stopped trying to "fix" their kids and learned to accept them and work with them on their own level.
Sure, there were problems, sure it was no picnic, but these parents realized that by looking at their child as a problem, they were only making it worse. By seeing their child as a human being, these parents were learning to communicate, interact and have a good time with their children. They were learning how to help their child develop a sense of worth, self-esteem, which will later translate into personal success and more independence for those children.
OK, perhaps not complete independence, but is personal happiness is still an option, right?
Also, there is a lot of hope for parents in there as well as a chance for us to see where parents are coming from.
I recommend this book as a fun, enlightening, comforting and amazing read!
Thursday, May 17, 2007
Is autism *really* as bad as a car accident or the death of a parent???
According to Calgary Stampeders football player, Jay McNeil, it is.
In this article: http://www.wrn.com/gestalt/go.cfm?objectid=92471727-A4F8-BC29-E4C49C87DD252981 written by Eric Francis, Jay McNeil "faces a brave new front".
My husband showed me this article and I think my normally low blood pressure rose to amazing new heights!
A few quotes from the article (This article will be posted in full at the end of this post since the Calgary Sun has this habit of removing articles after a short time and the link will not work):
The tears in Jay McNeil's eyes suggest the news hit every bit as hard as losing his father at age 11.
Even harder than the 18-wheeler that careened into him at age 25 and should have taken his life.
"My son..." started McNeil, pausing to deliver words no parent wants to utter, "has autism."
Good Gods...one would think the boy had been diagnosed with cancer or something!
Now, a parent might say that if their child was incredibly low functioning, this would definitely not be a good thing.
The truth is, from Jay's own quotes, he is not low functioning:
"We knew he liked letters and numbers but we just thought he was a smart kid," said McNeil, who wasn't told of the diagnosis until last fall.
"He's high functioning so we're pretty fortunate that way.
"There are lots of e-mails going around about autism and one from a mother who said she'd give anything to hear her son say 'I love you.' Cuyler will. As far as intelligence, he's as smart a kid as you'll find at that age."
Obviously, this boy can talk, count and do a lot of things most other kids his age can do.
So...my question is "What's the problem?"
The "problem", in my opinion, is not that Cuyler is autistic; it is the stigma that is now surrounding him.
Because of this newspaper article alone, which is meant to be inspiring, Cuyler McNeil is forever going to be associated with being something worse than Jay losing his father at the age of 11 and even worse than Jay being involved in car accidents that almost took his life.
He will read this article one day and he'll make the connection: who he is is worse than death or a car accident.
Sure, Jay says that Cuyler inspires him to be a better person, which is great, but there will always be that comparison to his own father's death and an accident that almost took his life. Two things that most certainly are traumatic and devastating.
How is that going to help raise a child's self esteem? How is that inspiring? The only thing it inspired in me was anger.
When I was looking for this article on Google, I dredged up a few other articles that also play the "Autism is devastating" card.
Some of the headlines:
"Autism is a Heartbreak to Parents" By Fraces Kraft
The link to that article did not take me to the article, but onto Autism Society Canada's website where I read even more headlines! (see link below)
http://www.autismsocietycanada.ca/general_info/archived_news/index_e.html
"Autism cash not enough: critics", By KATE DUBINSKI
"Critics say Ont. doesn't spend enough on autism." CTV News/ Canadian Press
"Coming to grips with autism." by John Ivison, National Post
"Autism needs funding, not platitudes." By Jim Young, The Chronicle Herald
This one scared me: "Canada: Court Of Appeal Overturns Superior Court Ruling On The Charter Rights Of Autistic Children." Article by Robert Weir. The article goes on to say Wynberg et al. v. Ontario and Deskin et al. v. Ontario (hereinafter "Wynberg Deskin"). Briefly, Justice Kiteley had ruled that the Ontario government’s decision to deny funding of IBI/ABA therapy to children over five years of age was a violation of their right to equal treatment at law under section 15 of the Canadian Charter of Rights and Freedoms (the "Charter").
Apparently, denying ABA/IBI is a violation of an autistic child's charter rights. Apparently, the government isn't spending enough money on forcing children to go through ineffective "therapy" for 40 hours a week!
Looking at how ABA/IBI is normally done, I would argue that this treatment is an even bigger violation of a child's charter rights to appropriate treatment. Meaning, the problems causing the behaviour are not being treated and a toddler is being forced into 40 hours a week (an average adult work week) of behavioural modification that will force him or her to pretend to be normal and not even address or acknowledge the real reason those behaviours are there.
That, in my opinion, is an even bigger violation of an autistic child's rights.
What's worse is the constant demonizing and bad press.
I was at a bookstore the other day while fuming over that article and I picked up a book called "A Cup of Comfort for Parents of Children with Autism: Stories of Hope and Everyday Success", Edited by Colleen Sell, with forwards by Doug Flutie and Laurie Flutie (another star football player with an autistic child).
I flipped through it excpecting to be bombarded with stories of how defective, tragic and devastating these parents feel their children are. How pleasantly surprised I was when I saw that this was not the case at all!
One mother talked in a manner very similar to Jay McNeil when it came to her son's diagnosis. One thing she did say right of the bat was something to the tune of "I did not cry. As my son's new advocate, crying was not an option." Later on in her article, she mentioned talking to some people who say somethign to effect of someone else they know whose child has 'something wrong with them'. It is there she asked herself "Have I been projecting that there is something wrong with my son?" At one point she even resolved to "stop trying to fix" her son.
I was ecstatic!
Flipping more through the pages, I read the story of a mother whose son was obsessed with snakes. She learned that if she wanted to communicate with him, she had to do it on the "snake level", meaning it had to have something to do with snakes. I was moved by the end of the article where she tucks him into bed and he says "Mommy, I love you more than snakes". Awww!
None of the parents in the book hid the basic facts and challenges of raising their childs. No details were spared that would hide the fact that life is difficult. Cleaning up feces, talking about snakes, dealing with kids in the playground and school officials...it was all there. What was not there was the negative attitude.
I liked that all of these parents found success in adopting a positive attitude and learning to accept and work with their children on their own level.
Sure, there were problems, sure it was no picnic, but these parents realized that by looking at their child as a problem, they were making life worse. I've been around parents of NT kids to know that parenting a NT kid is not always a picnic either.
I look at some of my relatives and friends who have NT kids and I look at some of the things they deal with:
1. Their kids bringing home all of their friends unannounced - and some of those friends are "bad eggs"
2. Their kids sneaking out in the middle of the night to go and get high, laid or drunk with their buddies
3. Their kids being brought home in the middle of the night by the cops when they get caught shoplifting or getting laid, high or drunk with their buddies
4. Their kids demanding the latest and greatest fashions, shoes and toys so they can fit in with the crowd
5. The constant anguish of dealing with kids who are not academincally inclined and more interested in hanging out with their friends
6. Their daughter with "easy virtues" coming home pregnant at a very young age (or for boys: getting some girl pregnant at a very young age!)
7. Their kids giving in easily to peer pressure
8. Their kids constantly defying their authority
Now...this is not to say that parents of NT's have it worse. This is not even to say this is what parents of NT's always have to deal with. Parents of autistic kids have their own set of worries as well. All parents of any child do!
What I am trying to get at is that having any type of child presents its pros and cons. Every single child on this planet comes with his or her own set of challenges.
Such is the joy of raising and teaching small human beings with their own minds, abilities and challenges.
By seeing their child as a human being, the parents in the book were learning to communicate, interact and have a good time with their children. They were learning how to help their child develop a sense of worth, self-esteem, which will later translate into personal success and more independence for those children.
As I've said enough times before: communication and interaction with people is a two way street.
Everyone has their limits, talents, challenges and exeperiences to deal with in life.
Each of us (I am referring to all human beings) are who we are because of a number of factors:
In this article: http://www.wrn.com/gestalt/go.cfm?objectid=92471727-A4F8-BC29-E4C49C87DD252981 written by Eric Francis, Jay McNeil "faces a brave new front".
My husband showed me this article and I think my normally low blood pressure rose to amazing new heights!
A few quotes from the article (This article will be posted in full at the end of this post since the Calgary Sun has this habit of removing articles after a short time and the link will not work):
The tears in Jay McNeil's eyes suggest the news hit every bit as hard as losing his father at age 11.
Even harder than the 18-wheeler that careened into him at age 25 and should have taken his life.
"My son..." started McNeil, pausing to deliver words no parent wants to utter, "has autism."
Good Gods...one would think the boy had been diagnosed with cancer or something!
Now, a parent might say that if their child was incredibly low functioning, this would definitely not be a good thing.
The truth is, from Jay's own quotes, he is not low functioning:
"We knew he liked letters and numbers but we just thought he was a smart kid," said McNeil, who wasn't told of the diagnosis until last fall.
"He's high functioning so we're pretty fortunate that way.
"There are lots of e-mails going around about autism and one from a mother who said she'd give anything to hear her son say 'I love you.' Cuyler will. As far as intelligence, he's as smart a kid as you'll find at that age."
Obviously, this boy can talk, count and do a lot of things most other kids his age can do.
So...my question is "What's the problem?"
The "problem", in my opinion, is not that Cuyler is autistic; it is the stigma that is now surrounding him.
Because of this newspaper article alone, which is meant to be inspiring, Cuyler McNeil is forever going to be associated with being something worse than Jay losing his father at the age of 11 and even worse than Jay being involved in car accidents that almost took his life.
He will read this article one day and he'll make the connection: who he is is worse than death or a car accident.
Sure, Jay says that Cuyler inspires him to be a better person, which is great, but there will always be that comparison to his own father's death and an accident that almost took his life. Two things that most certainly are traumatic and devastating.
How is that going to help raise a child's self esteem? How is that inspiring? The only thing it inspired in me was anger.
When I was looking for this article on Google, I dredged up a few other articles that also play the "Autism is devastating" card.
Some of the headlines:
"Autism is a Heartbreak to Parents" By Fraces Kraft
The link to that article did not take me to the article, but onto Autism Society Canada's website where I read even more headlines! (see link below)
http://www.autismsocietycanada.ca/general_info/archived_news/index_e.html
"Autism cash not enough: critics", By KATE DUBINSKI
"Critics say Ont. doesn't spend enough on autism." CTV News/ Canadian Press
"Coming to grips with autism." by John Ivison, National Post
"Autism needs funding, not platitudes." By Jim Young, The Chronicle Herald
This one scared me: "Canada: Court Of Appeal Overturns Superior Court Ruling On The Charter Rights Of Autistic Children." Article by Robert Weir. The article goes on to say Wynberg et al. v. Ontario and Deskin et al. v. Ontario (hereinafter "Wynberg Deskin"). Briefly, Justice Kiteley had ruled that the Ontario government’s decision to deny funding of IBI/ABA therapy to children over five years of age was a violation of their right to equal treatment at law under section 15 of the Canadian Charter of Rights and Freedoms (the "Charter").
Apparently, denying ABA/IBI is a violation of an autistic child's charter rights. Apparently, the government isn't spending enough money on forcing children to go through ineffective "therapy" for 40 hours a week!
Looking at how ABA/IBI is normally done, I would argue that this treatment is an even bigger violation of a child's charter rights to appropriate treatment. Meaning, the problems causing the behaviour are not being treated and a toddler is being forced into 40 hours a week (an average adult work week) of behavioural modification that will force him or her to pretend to be normal and not even address or acknowledge the real reason those behaviours are there.
That, in my opinion, is an even bigger violation of an autistic child's rights.
What's worse is the constant demonizing and bad press.
I was at a bookstore the other day while fuming over that article and I picked up a book called "A Cup of Comfort for Parents of Children with Autism: Stories of Hope and Everyday Success", Edited by Colleen Sell, with forwards by Doug Flutie and Laurie Flutie (another star football player with an autistic child).
I flipped through it excpecting to be bombarded with stories of how defective, tragic and devastating these parents feel their children are. How pleasantly surprised I was when I saw that this was not the case at all!
One mother talked in a manner very similar to Jay McNeil when it came to her son's diagnosis. One thing she did say right of the bat was something to the tune of "I did not cry. As my son's new advocate, crying was not an option." Later on in her article, she mentioned talking to some people who say somethign to effect of someone else they know whose child has 'something wrong with them'. It is there she asked herself "Have I been projecting that there is something wrong with my son?" At one point she even resolved to "stop trying to fix" her son.
I was ecstatic!
Flipping more through the pages, I read the story of a mother whose son was obsessed with snakes. She learned that if she wanted to communicate with him, she had to do it on the "snake level", meaning it had to have something to do with snakes. I was moved by the end of the article where she tucks him into bed and he says "Mommy, I love you more than snakes". Awww!
None of the parents in the book hid the basic facts and challenges of raising their childs. No details were spared that would hide the fact that life is difficult. Cleaning up feces, talking about snakes, dealing with kids in the playground and school officials...it was all there. What was not there was the negative attitude.
I liked that all of these parents found success in adopting a positive attitude and learning to accept and work with their children on their own level.
Sure, there were problems, sure it was no picnic, but these parents realized that by looking at their child as a problem, they were making life worse. I've been around parents of NT kids to know that parenting a NT kid is not always a picnic either.
I look at some of my relatives and friends who have NT kids and I look at some of the things they deal with:
1. Their kids bringing home all of their friends unannounced - and some of those friends are "bad eggs"
2. Their kids sneaking out in the middle of the night to go and get high, laid or drunk with their buddies
3. Their kids being brought home in the middle of the night by the cops when they get caught shoplifting or getting laid, high or drunk with their buddies
4. Their kids demanding the latest and greatest fashions, shoes and toys so they can fit in with the crowd
5. The constant anguish of dealing with kids who are not academincally inclined and more interested in hanging out with their friends
6. Their daughter with "easy virtues" coming home pregnant at a very young age (or for boys: getting some girl pregnant at a very young age!)
7. Their kids giving in easily to peer pressure
8. Their kids constantly defying their authority
Now...this is not to say that parents of NT's have it worse. This is not even to say this is what parents of NT's always have to deal with. Parents of autistic kids have their own set of worries as well. All parents of any child do!
What I am trying to get at is that having any type of child presents its pros and cons. Every single child on this planet comes with his or her own set of challenges.
Such is the joy of raising and teaching small human beings with their own minds, abilities and challenges.
By seeing their child as a human being, the parents in the book were learning to communicate, interact and have a good time with their children. They were learning how to help their child develop a sense of worth, self-esteem, which will later translate into personal success and more independence for those children.
As I've said enough times before: communication and interaction with people is a two way street.
Everyone has their limits, talents, challenges and exeperiences to deal with in life.
Each of us (I am referring to all human beings) are who we are because of a number of factors:
- Experience - How one experiences the world from birth will colour the way that person behaves for the rest of his or her life. Autistic children experience the world in a completely different way than most people because of a differently wired nervous system. Certain sensory filters may not be in place, or may be too effective to the point of not being able to sense at all. No two autistics will experience the world the same way, which makes it even harder for someone to pinpoint what the person experiences...just like everyone else.
- Past Interactions - We all know that past encounters will shape the way we view certain things. Almost everyone has had some sort of traumatic encounter that makes them "once bitten, twice shy" or leery about encountering similar situations again! How many people have said they don't like bees because they got stung as a child? How many people fear heights or something because of something that happened in their childhood? Autistic children have encounters that traumatise them too. Some have constant encounters with their sensory system that are bothersome, but they cannot articulate it because they have always felt that way and know no different way of being.
- Messages Received from Authority Figures - Human beings are interesting in that they instinctively shape themselves based on the feedback received by those they perceive to be in positions of authority. How many people have said that all they wanted was their father to say he was proud of them? I've heard this from NT's and autistics alike for years. The same goes for teachers, parents, religious officials, etc.
- The Environment - Location, location, location! Whether we are raised in a war zone, trailer park, townhouse, apartment building, house or mansion makes all the difference in how we see our world and develop within it. There are also climate factors: tropical, arctic, wet, dry, etc. all have their effects
- Friends - "You can pick your friends, you can pick your nose, but you can't wipe your friends on the back of the couch." (A quote from my friend, Fil) The people we associate with make a difference as well...even for autistic kids. When I was in that residential facility (institution), my mother said that I started picking up the bad habits of the other autistic kids. "When in Rome", right? This is why I often caution parents when thinking of sending their kids to a "special school". When I went to Alternative High School, I found myself in the company of a lot of interesting people, many of whom are my friends today. Their encouragement, ideas and lessons helped make me become the adult I am. What of not-so-good friends? The druggies, drunkards and bad-asses? They shape one's life too...
- Family - "Blood is thicker than water...and tastes better with crackers" ( A badge I bought years ago) Family is not something you choose and not something you can get rid of either. One can disown a family, but as long as the DNA is in their bodies, that person will always be of that family! How a family behaves toward a child makes all the difference, since it is a home and family that the chils will likely be exposed to most. How parents and siblings treat a child are especially important.
The parents in the book are taking the right steps in that they are seeing their children as human beings and they know the impact they are having on their children's lives.
I've often said that parents and caregivers have an incredible amount of power over their children's destiny. What they say, do and provide for that child will shape that chil'd life, how he thinks of himself, how he reacts and how he will be in the future.
What are you providing for your child?
What are you saying to your child; out loud and through your actions and attitude?
What are you doing to your child?
Becoming a parent is almost too easy: A few minutes of fun, 9 months of carrying baby around inside the womb, varying hours of labour and that's it. (well, biologically it is) Any fertile couple can produce a child.
Being a parent is much harder. There is the reponsibility that comes with bringing an individual human being into this world. The actions, thoughts, words and attitudes of parents will shape their child's destiny. That's a big responsibility and one each parent needs to consider and honour.
What destiny, then, is Cuyler facing, with a father cries to mention his son's autism; who compares him being autistic to losing his own father at a young age and nearly being killed in a motor vehicle accident?
What does this boy have to look forward to when his own parents see him as a travesty? What will his self-image be like? What is his future going to be like?
I hope, for Cuyler's sake, that Jim McNeil eventually dries up his tears, accepts his son for who he is and helps his son strive to be the best he can be with all the encouragement, love and guidance he will need in life!
It's not as bad as a car accident, cancer or losing a parent. I know...I am autistic.
Stamp faces brave new front
Autistic son inspires McNeil to be great dad
By ERIC FRANCIS -- Sun Media
(Published on Wednesday May 16, 2007)
Stampeders o-lineman Jay McNeil and his wife, Tara, pose with their son Cuyler yesterday at their home. McNeil, who is set to receive the President's Ring from the Stamps organization tomorrow, publicly stated that Cuyler was diagnosed with autism. (Sun Media/Darren Makowichuk)
The tears in Jay McNeil's eyes suggest the news hit every bit as hard as losing his father at age 11.
Even harder than the 18-wheeler that careened into him at age 25 and should have taken his life.
"My son..." started McNeil, pausing to deliver words no parent wants to utter, "has autism."
On the eve of accepting his second-straight President's Ring as the Calgary Stampeders' most inspirational player on and off the field, McNeil chose to pay tribute to his greatest inspiration by going public for the first time with the battle being waged by his four-year-old boy, Cuyler.
"When you get the news that your kid is autistic, it's devastating," said McNeil yesterday, wiping tears from his cheeks.
"But I wouldn't change it for the world. Every day we thank God for bringing him into our lives. He's the best kid you could ever ask for. He's got the best attitude and is the gentlest kid. He doesn't ever want to hurt anybody. He just wants to have fun."
It was more than a year ago McNeil and wife Tara noticed Cuyler's affinity for counting, which led doctors to send him to a developmental pediatrician.
"We knew he liked letters and numbers but we just thought he was a smart kid," said McNeil, who wasn't told of the diagnosis until last fall.
"When they sat us down to tell us it was hard -- I teared up. But when I was driving home I called my mom to tell her and I finally broke down. Thing is, I wouldn't want him any other way. We loved him and thought he was an awesome kid beforehand and it doesn't change who he is."
Autism is a developmental disability stemming from a disorder in the central nervous system. It can affect children by delaying social interaction, language or play.
"Most people wouldn't know -- we kind of haven't really said a whole lot," said McNeil, 36, who has registered Cuyler in a regular school for next year.
"It can range from mental retardation to kids that don't talk and may never talk.
"He's high functioning so we're pretty fortunate that way.
"There are lots of e-mails going around about autism and one from a mother who said she'd give anything to hear her son say 'I love you.' Cuyler will. As far as intelligence, he's as smart a kid as you'll find at that age."
Thankful he lives in Alberta, which has the highest autism funding in Canada, the London, Ont., native says 30 hours of one-on-one work with two aids every week has helped Cuyler make huge developmental leaps since September.
A longtime spokesman for CUPS who has made regular appearances at charity functions throughout his 13-year career, McNeil says he and Tara want to get involved with Autism fundraising.
Fortunate enough to have won two Grey Cups while playing in front of a handful of the game's top quarterbacks the last 13 years, the 300-lb. Stampeders offensive-lineman also feels blessed to have escaped death after experiencing two high-impact car accidents within an hour.
"My Jeep hit black ice and rolled end over end twice and then on its side," said McNeil of the 1996 accident on a North Dakota highway.
"The cops came and we were waiting for a tow truck and an 18-wheeler slid on the same ice and crushed all three cars we were in.
"I was sure the cop next to me was dead -- he was slumped over the wheel and unconscious and I didn't have a scratch on me. I was definitely lucky to be alive."
Despite his son's battles, not a day goes by the five-time all-star doesn't realize how charmed his life has been.
McNeil is revered by teammates and a fan favourite on a model franchise that will honour him at noon tomorrow with a soldout luncheon at the Convention Centre sure to get emotional when talk turns to his family.
"Whenever things get tough I think about Cuyler," said McNeil, only the third Stamp to win consecutive President's Rings as voted by teammates (the others being Alondra Johnson and Danny Barrett).
"He's easily the most inspirational thing in my life. Everything Tara and I do we think of him first. We just want to give him every chance to succeed."
Just like his big daddy.
Wednesday, May 9, 2007
Is All the Media Hype a *good* Thing?
On April 29, 2007, an article called "Hollywood Finds its Disorder Du Jour" was published in the New York Times. http://www.nytimes.com/2007/04/29/movies/29jame.html?ex=1178856000&en=3d30b42a68e0e09e&ei=5070
The article illustrates that autism is getting a lot of press on things like Oprah, Larry King, The View, etc. It is also a popular subject in moves, such as Snow Cake.
This article was posted on a miling list that I'm on and the reactions have been mixed: Some parents think this is a fabulous thing and gives so much hope for their kids. Many of us on the spectrum, myself included are really looking forward to the time when autism's 15 minutes of fame are up.
I find all this sensantionalistic attention to autism to be somewhat irritating and I was questioned by a well-meaning soul. His or her argument was that many of us have complained that our parents did not understand us and it made our lives more difficult. By having the media involved, more understanding is brought to the masses, parents are seeing things differently, will get their children the help they need, which will then result in a "happier healthier" child.
Fair logic, of course. I always like to be challenged to see things in a different light, but I do have my reservations about the method, even if I do agree with the motive that more knowledge needs to be put out to the world.
My reponse is:
Interesting logic and I can see the point.
However, Hollywood doesn't exactly do the best job of portraying autism, nor does it even come close to showing what it may actually be like for us. It certainly does not portray us in a flattering light.
Rain Man came out in the theatres when I was about 13. That was the time I was told I was autistic.
I'm almost 32 now and have had to live with the stigma of Rain Man in my career and other areas of my life.
Do you know how many times I've been told "You can't possibly be autistic...you're not like Rain Man!"? How many times I've been asked "So, if you're autistic, you can count cards like Rain Man too, right?" And on and on and on.
My parents were even approached by a TV station in the late 70's to make a movie about how I was treated and they outright refused. The reasoning was that I was the first child at a new society for autism treatment in my home town who was treated for Autism under the age of 6 and did very well by it. They almost wouldn't take me in because they would not treat kids under 6, but my parents managed to convince them to try. I was the youngest there.
Now, early intervention is the way to go. The younger the better, right?
My parents did not want my life to be overshadowed with the A word because they knew I'd somehow do all right. They didn't want their lives overshadowed even more. My mother said that I could grow up and change my name, and no one would know who I was. I would look different as an adult than I would have as the little child on TV. They would always be remembered as those people with the autistic kid who was in that movie. Sure, they may have made a ton of money with it, but my parents did not want our family's reputation sullied. I am grateful for that, seeing the implications first hand.
Had the movie been made, I think my life would be worse. Even if I didn't tell prospective employers, they'd know my name and associate it with autism and perhaps not give me a job. My father freaked when I was on the front page of the news back in 2003.
I ended up changing my first and last name last year because I found it increasingly difficult to get a job after that newspaper article came out, even though it was very positive and focused on the good things I am doing with my life. Prospective employers likely remembered the name, how it was associated with autism and decided not to even call me for an interview...even though I was qualified.
Prior to the article's publication, I had no problem getting jobs.
Happier, healthier children because of the publicity? It certainly has not made me happier, nor healthier. I've had to change my name (which is OK, because I hated my old name anyway) .
I've beaten this one a few times on this blog, but the PR we seem to get is associated with the words "Travesty", "Epidemic", "Burden", "Fate worse than death or cancer", etc. I doubt it's really going to give much benefit to the children growing up who are going to be living with the negative spin these societies, movies and such put on autism.
That being said, I do agree that the general public, parents and professionals really do need to be educated about what autism is exactly. Before they can be educated, however, I think that needs to be determined for fact (not the speculations currently flying about) and how it affects us as autistic people and not just those around us. The whole picture needs to be looked at and people need to understand.
Currently, autism education seems to be limited to the sensationalistic hype of the popular media and the "doom and gloom" approach of the autism societies and therapists.
I don't think they're getting the right message at all, which, in my opinion, is really doing no good for anyone involved.
Then the question must be asked: "If the current messages being put out are not beneficial, how can it be done?"
There are attempts by many to put the word out to the world.
Most notable is "Getting the Truth Out" (http://www.gettingthetruthout.org), created by a collective of autistic adults, which is a direct rebuttal to a website called "Getting the Word Out"(http://www.gettingthewordout.org/), which was created by the Autism Society of America.
Getting the Word Out has changed their website since Getting the Truth Out was published, so you will likely be wondering how is one a direct rebuttal of another? They don't even look the same!
Now, Getting the Word Out has this very depressed and despondent little boy as their poster child and the same black background and scribbly print as most anti-drug or gang sites have.
Their initial paragraph: "Living with autism can be a very cold and lonely life for a child. Not to mention, very challenging for the whole family. One day, that child living with autism, will grow up to be an adult living with autism."
That's kind of like saying "That cute little baby rat is going to grow up to be an adult rat who carries pestilence and death to all it encounters." That may not be what they're saying exactly, but they might as well be, in my opinion.
They then go on:
"Only by getting the word out about the harsh realities of autism can we even begin to help put all the pieces of this puzzle back together.
Why are we doing all of this? Why not just turn the other cheek like so many before?
The sooner autism is diagnosed, the sooner treatment can begin, and the sooner families living with autism can reduce some of the challenges associated with this disability."
I'm not seeing much of an improvement in their message. Are you? (Maybe I'm missing something)
[impending sarcasm alert! Please do not read if you are emotionally sensitive to a little bit of sarcasm. There is another red notice at the end, so you can scroll directly down to it.]
:o( <----- My despondent little sad face guy can be the poster child of my "Let's Stop the Bad PR" campaign. "Living with the stigma that doom and gloom societies who claim to advocate for autism perpetuate can be a very cold and lonely life for an autistic child. Not to mention, very challenging for the whole world. One day, that child living with negative stigma, will grow up to be an adult living with negative stigma."
I could then go on to say:
"Only by getting the word out about the harsh realities of autism-related stigma can we even begin to help [I'm completely omitting that whole irrittating puzzle reference] create a world that is not only understanding towards autistic individuals, but accepting as well.
Why are we doing all of this?
The sooner the negative stigma is stopped, the sooner understanding and acceptance can grow, and the sooner autistic individuals and their loved ones can avoid some of the challenges associated with this tye of negative publicity and perhaps lead happier lives."
[The Sarcasm Alert has passed and readers can now continue to enjoy the rest of this blog]
There are hundreds of web sites, blogs, books and such out there that it must be very overwhelming even for NT's to look at!
I have categorized them in a way that has made them easier for me to sort through them:
Websites
In her own words regarding her reasoning: “I thought if you make a movie about autism, I'm not going to want to see it,” “I'm not going to want to sit there for an hour and a half and kind of be beaten up. I said we need to find a structure where Autism is the obstacle and the subject are the people.”
(See this site for the whole article http://www.ny1.com/ny1/content/index.jsp?stid=19&aid=69425)
The movie is called "Autism: The Musical" and it is the story of 6 autistic children and their families who get involved in a project called "The Miracle Project", which is to have these kids perform in a musical. The film illustrates everything that goes into this "project" and what is happening with everyone involved, from families to communities.
Reviewer Ronnie Scheid of Variety.com wrote that "With nary a throbbing violin (though one boy plays the cello), pic manifests each child's value, minimizing neither their undoubted potential nor their very real problems." (See the full review of Autism: The Musical here http://www.variety.com/review/VE1117933474.html?categoryid=31&cs=1)
I have not seen this movie, so I am not qualified to give my opinion of it either way. (I had originally thought this was an actual musical about autism and got a good laugh until I found out it was a movie about autistic children creating and performing in a musical)
I know that Autism Speaks (an organization that many autistic adults, myself included, emphatically say "Does not speak for *me*!") supports the making of this movie. At least their website looks more positive than "Getting the Word Out".
Looking at the quote above, I would like to see more of the "manifesting each [person's] value, minimizing neither their undoubted potential nor their very real problems."
Thank you, Ronnie Scheib, for articulating in your review that which I would certainly like to see more of when it comes to publicity and autism!
If autism's 15 minutes of fame is not soon to expire, then can we at least get some *decent* press?
Is that possible?
The article illustrates that autism is getting a lot of press on things like Oprah, Larry King, The View, etc. It is also a popular subject in moves, such as Snow Cake.
This article was posted on a miling list that I'm on and the reactions have been mixed: Some parents think this is a fabulous thing and gives so much hope for their kids. Many of us on the spectrum, myself included are really looking forward to the time when autism's 15 minutes of fame are up.
I find all this sensantionalistic attention to autism to be somewhat irritating and I was questioned by a well-meaning soul. His or her argument was that many of us have complained that our parents did not understand us and it made our lives more difficult. By having the media involved, more understanding is brought to the masses, parents are seeing things differently, will get their children the help they need, which will then result in a "happier healthier" child.
Fair logic, of course. I always like to be challenged to see things in a different light, but I do have my reservations about the method, even if I do agree with the motive that more knowledge needs to be put out to the world.
My reponse is:
Interesting logic and I can see the point.
However, Hollywood doesn't exactly do the best job of portraying autism, nor does it even come close to showing what it may actually be like for us. It certainly does not portray us in a flattering light.
Rain Man came out in the theatres when I was about 13. That was the time I was told I was autistic.
I'm almost 32 now and have had to live with the stigma of Rain Man in my career and other areas of my life.
Do you know how many times I've been told "You can't possibly be autistic...you're not like Rain Man!"? How many times I've been asked "So, if you're autistic, you can count cards like Rain Man too, right?" And on and on and on.
My parents were even approached by a TV station in the late 70's to make a movie about how I was treated and they outright refused. The reasoning was that I was the first child at a new society for autism treatment in my home town who was treated for Autism under the age of 6 and did very well by it. They almost wouldn't take me in because they would not treat kids under 6, but my parents managed to convince them to try. I was the youngest there.
Now, early intervention is the way to go. The younger the better, right?
My parents did not want my life to be overshadowed with the A word because they knew I'd somehow do all right. They didn't want their lives overshadowed even more. My mother said that I could grow up and change my name, and no one would know who I was. I would look different as an adult than I would have as the little child on TV. They would always be remembered as those people with the autistic kid who was in that movie. Sure, they may have made a ton of money with it, but my parents did not want our family's reputation sullied. I am grateful for that, seeing the implications first hand.
Had the movie been made, I think my life would be worse. Even if I didn't tell prospective employers, they'd know my name and associate it with autism and perhaps not give me a job. My father freaked when I was on the front page of the news back in 2003.
I ended up changing my first and last name last year because I found it increasingly difficult to get a job after that newspaper article came out, even though it was very positive and focused on the good things I am doing with my life. Prospective employers likely remembered the name, how it was associated with autism and decided not to even call me for an interview...even though I was qualified.
Prior to the article's publication, I had no problem getting jobs.
Happier, healthier children because of the publicity? It certainly has not made me happier, nor healthier. I've had to change my name (which is OK, because I hated my old name anyway) .
I've beaten this one a few times on this blog, but the PR we seem to get is associated with the words "Travesty", "Epidemic", "Burden", "Fate worse than death or cancer", etc. I doubt it's really going to give much benefit to the children growing up who are going to be living with the negative spin these societies, movies and such put on autism.
That being said, I do agree that the general public, parents and professionals really do need to be educated about what autism is exactly. Before they can be educated, however, I think that needs to be determined for fact (not the speculations currently flying about) and how it affects us as autistic people and not just those around us. The whole picture needs to be looked at and people need to understand.
Currently, autism education seems to be limited to the sensationalistic hype of the popular media and the "doom and gloom" approach of the autism societies and therapists.
I don't think they're getting the right message at all, which, in my opinion, is really doing no good for anyone involved.
Then the question must be asked: "If the current messages being put out are not beneficial, how can it be done?"
There are attempts by many to put the word out to the world.
Most notable is "Getting the Truth Out" (http://www.gettingthetruthout.org), created by a collective of autistic adults, which is a direct rebuttal to a website called "Getting the Word Out"(http://www.gettingthewordout.org/), which was created by the Autism Society of America.
Getting the Word Out has changed their website since Getting the Truth Out was published, so you will likely be wondering how is one a direct rebuttal of another? They don't even look the same!
Now, Getting the Word Out has this very depressed and despondent little boy as their poster child and the same black background and scribbly print as most anti-drug or gang sites have.
Their initial paragraph: "Living with autism can be a very cold and lonely life for a child. Not to mention, very challenging for the whole family. One day, that child living with autism, will grow up to be an adult living with autism."
That's kind of like saying "That cute little baby rat is going to grow up to be an adult rat who carries pestilence and death to all it encounters." That may not be what they're saying exactly, but they might as well be, in my opinion.
They then go on:
"Only by getting the word out about the harsh realities of autism can we even begin to help put all the pieces of this puzzle back together.
Why are we doing all of this? Why not just turn the other cheek like so many before?
The sooner autism is diagnosed, the sooner treatment can begin, and the sooner families living with autism can reduce some of the challenges associated with this disability."
I'm not seeing much of an improvement in their message. Are you? (Maybe I'm missing something)
[impending sarcasm alert! Please do not read if you are emotionally sensitive to a little bit of sarcasm. There is another red notice at the end, so you can scroll directly down to it.]
:o( <----- My despondent little sad face guy can be the poster child of my "Let's Stop the Bad PR" campaign. "Living with the stigma that doom and gloom societies who claim to advocate for autism perpetuate can be a very cold and lonely life for an autistic child. Not to mention, very challenging for the whole world. One day, that child living with negative stigma, will grow up to be an adult living with negative stigma."
I could then go on to say:
"Only by getting the word out about the harsh realities of autism-related stigma can we even begin to help [I'm completely omitting that whole irrittating puzzle reference] create a world that is not only understanding towards autistic individuals, but accepting as well.
Why are we doing all of this?
The sooner the negative stigma is stopped, the sooner understanding and acceptance can grow, and the sooner autistic individuals and their loved ones can avoid some of the challenges associated with this tye of negative publicity and perhaps lead happier lives."
[The Sarcasm Alert has passed and readers can now continue to enjoy the rest of this blog]
There are hundreds of web sites, blogs, books and such out there that it must be very overwhelming even for NT's to look at!
I have categorized them in a way that has made them easier for me to sort through them:
Websites
- Autistic Self Advocacy/Information Sites (Individuals and organizations) - Websites created by autistics or groups of autistics that are designed to convey a message about what it is like to be autistic and what their wishes are with regards to how autistics are treated in society. Some include statistics and real-life stories from the autistic standpoint.
One thing to note about sites created by autistic individuals and groups is that their style of presentation and writing may be a little blunt for the more sensitive viewers out there. Some content may seem disturbing to some, some may just come across as just plain rude and insensitive!
When reading these sites, I recommend putting any emotional responses on the back burner and just reading the words. Detach yourself. Most autistics are quite brutally honest, but you can rest assured knowing that you are getting the truth, if not a warm fuzzy feeling.
- Parent-created Advocacy/Information Sites - Websites created by parents and/or families of autistic children and designed to provide insight and information from the perspective of families. Some include personal stories, tips for other parents, links, testimonials (I almost said "Testi-MOM-ials", which is a cute word!), etc.
The thing to remember with any personal web-site: you will see a variety of viewpoints and attitudes, from the downright positive to the essential pity party. Surf at your discretion!
- Societies - Societies are formed in order to achieve a certain goal or bring like minded people together for a cause. Their motivations are noble: They want to help people with something. Autism societies have the same goals, and like other societies, need money to achieve the goals...lots of money. Advertising specialists know why people fork out money for something: they either want a product or service very badly, or they have been peitioned at the weakest point of their social defence: their emotions; particularly negative ones. In other words, if Joe Public does not desperately need or want the services/products provided by the society, the society then needs to appeal to his base emotions (the "heart strings" approach). Therefore, autism societies do need to resort to scare tactics, heart wrenching language and emotional stimulating stories and pictures to make their money. Not the best PR for those of us they are claiming to serve, but excellent revenue generators for them.
- Products and Services - This is truly an entertaining and educational area if you have the time to seek these types of web sites out. Nobody really wants to say it, so I will: There is a lot of money to made on autism! Ask any parwent who has ever shelled out $40,000.00 a year for ABA therapy and who knows what else. Entrepreneurs: are you looking for a surefire way to make money? Market your product or service as being for autism. It doesn't matter what it is: horse manure mud-packs, electoshock treatment, chelation therapy, coloured sunglasses, games, videos, books, clothing, shoes, foods, etc. - Autism has become a very lucrative industry! Some products and services will be immensely useful, while others reek of snake oil. Excercise caution and ask around before committing to any theories, products or services.
- Theories and Scientific Study - While theories and scientific studies of all sorts may appear on any one of the types of sites listed above, they can also take up webspace of their very own. These are as entertaining as the Products and Services out there. Like the Products and Services, some theories are very feasible and workable, others are just plain left field!
- News -
Blogs, books, pamphlets and such fall under similar categories as the websites. My simple advise to anyone reading, surfing, learning or buying is Caveat Emptor - Let the buyer beware.
Another thing to remember is that any literature is best approached with an open mind. You may not agree with someone's work, but you'll know what is out there. Knowledge is power, folks.
A more positive attempt to get the word out has been made by a filmmaker by the name of Trisha Regan. Trisha is the mother of an autistic child who is probably as sick and tired of the negative PR as well, so she decided to do somerthing about it in the best way she could: she made a movie.In her own words regarding her reasoning: “I thought if you make a movie about autism, I'm not going to want to see it,” “I'm not going to want to sit there for an hour and a half and kind of be beaten up. I said we need to find a structure where Autism is the obstacle and the subject are the people.”
(See this site for the whole article http://www.ny1.com/ny1/content/index.jsp?stid=19&aid=69425)
The movie is called "Autism: The Musical" and it is the story of 6 autistic children and their families who get involved in a project called "The Miracle Project", which is to have these kids perform in a musical. The film illustrates everything that goes into this "project" and what is happening with everyone involved, from families to communities.
Reviewer Ronnie Scheid of Variety.com wrote that "With nary a throbbing violin (though one boy plays the cello), pic manifests each child's value, minimizing neither their undoubted potential nor their very real problems." (See the full review of Autism: The Musical here http://www.variety.com/review/VE1117933474.html?categoryid=31&cs=1)
I have not seen this movie, so I am not qualified to give my opinion of it either way. (I had originally thought this was an actual musical about autism and got a good laugh until I found out it was a movie about autistic children creating and performing in a musical)
I know that Autism Speaks (an organization that many autistic adults, myself included, emphatically say "Does not speak for *me*!") supports the making of this movie. At least their website looks more positive than "Getting the Word Out".
Looking at the quote above, I would like to see more of the "manifesting each [person's] value, minimizing neither their undoubted potential nor their very real problems."
Thank you, Ronnie Scheib, for articulating in your review that which I would certainly like to see more of when it comes to publicity and autism!
If autism's 15 minutes of fame is not soon to expire, then can we at least get some *decent* press?
Is that possible?
Monday, April 30, 2007
Just a silly one about theory of mind
I find that it comes as a shock to most NT's that many autistics have this kind of underlying hostility towards them and they cannot figure out why. It's kind of funny when you think about it.
You see, so many NT's and professionals think autistics have a problem with theory of mind: recognizing that other people have feelings, etc. I'm not saying that all autistics do have a grasp on this, since many have problems with this.
I have to constantly remind myself that "other people have feelings too" and "How would I like it if someone did that to me?". Yep...this is something I have to consciously do.
When I was a kid, I used to look at other people like moving, talking things. I saw nothing in their eyes,...they looked dead to me...but still walking and talking. (Hard to explain) All I could feel were emotions coming from them (usually hatred).
When I finally taught myself to look at someone's eyes and body language (that took a very long time), I began to see so much more. People are not dead automatons. Their eyes and facial expressions tell so much and they correlated with the emotions I was feeling.
You know, I think learning to read books was easier for me... I learned to read at 3...it's taken me over 25 years to learn about emotions and body language as they emanate from NT's.
Even harder still is talking to other autistics! I keep having to revert back to my natural way of speaking, otherwise they get offended or confused because I'm talking like a NT.
*sigh* I just can't win.
Well, I find the same goes for most NT's. They don't seem to think that autistics have feelings, dreams and intelligence as well. Often, we are seen as walking automatons who are normal people that are seemingly "dead" or "trapped" and need to be brought out.
Autistics may not be recognizing all of the feelings and signals NT's are emitting, but I find NT's just as incapable of doing the same for autistics. I cannot begin to count how many times someone has misinterpreted my signals, feelings and such!
When I talk to some people, I keep thinking "We're both speaking English here...what is it you're not getting? What am I not saying right?"
A mother said on a mailing list: "Finally, I stopped being hung up on the label and started getting to know my {child] who who [my child] is."
That is something so many people forget. Each autistic is different, each has different needs and different issues and different ways to deal with said issues.
They're so busy feeling sorry for themselves as parents of autistic children, that they tend to forget that it can suck just as much, if not more, to *be* the autistic child to whom no one gives any credence!
It was not fun for me to be a child any more than it was for my parents to raise me. I feel bad for them, but they chose to have me.
I didn't ask to be born the way I was.
I could see it now (warning" Sarcasm alert):
"Yes, I would like to be born with a developmental disability that will make my life and the lives of those around me a big pain in the butt. I want to have all sorts of problems with my body and nervous system and I'd like for people to constantly misunderstand me, write me off and think I'm something that I'm not. I'd like to have problems learning certain things and I want to always be on edge.
"I'd like to feel sick all the time and not be able to express what I'm feeling so I'll never get treated properly and people can think I'm just a hypochondriac.
"I'd like to have less of a chance of succeeding in life than the next guy...oh yes, can you make me female as well just so I can *really* experience that whole Glass Ceiling effect from both the autistic and female perspective? That would just be awesome!
"I want to really have poor chances of getting anywhere in life cuz I'm just a sado-masochist at heart!
I also want every one else around me to feel like crap too cuz I'm also an insensitive clod...what? Insensitivity comes as part of the Autism Deluxe Package Deal?? Whoo hoo! Score!
"Where do I sign up?"
Ok...sarcasm has passed. Sorry 'bout that...just a little burst of anger and frustration.
They could have gotten rid of me, put me up for adoption, etc. But they didn't. They chose to keep and raise me. They accepted their responsibility as parents and I am very grateful for that.
I am also even more grateful for the fact that I got far enough ahead in life that I can now look after them as they age.
Kids, even autistic ones, can usually perceive some sort of negativity towards them and it helps no one in the end. The kid grows up feeling inadequate, defective and unable to do anything, while the parents have to deal with supporting their children even more.
Yeah, I know..."try being the parent". (See, there goes the theory of mind prompting again...)
I'll never be a parent, but I've grown up with the stigma, negative press and all that which is out there about autism. I've spent my life proving that I am not the worst case scenario that seems to get shown in the brochures, websites, blogs, movies and TV.
Who's going to hire someone who has that "epidemic" that is just a "devastating" and "tragic" bloe to families?
Why not just stamp "sociopath" on my forehead?
I'd probably have more a running chance of getting a job with &that* label than I do being an honest, hardworking autistic person!
Look at most CEO's and such out there - most of them fit the psychological profile of a sociopath and they're at the top of the work food chain! (Sociopath does not always equal serial killer, by the way. Sociopaths just have no conscience and get what they want ruthlessly.)
I've spent my whole life fighting to be heard, to be accepted and to be allowed to make my own way in the world without people thinking I'm incapable of this or that. I know how hard it was to raise *myself*.
If I had an autistic child who had to go through what I have, I'd be going postal on someone's butt at least twice a day...which would be very bad. I wouldn't want my kid to live through what I have...and I've done really well! I'd hate to see any child go through what a lot of other autistic people have to go through. I was lucky!
Theory of mind works *both* ways, it seems. Just as communication does.
You see, so many NT's and professionals think autistics have a problem with theory of mind: recognizing that other people have feelings, etc. I'm not saying that all autistics do have a grasp on this, since many have problems with this.
I have to constantly remind myself that "other people have feelings too" and "How would I like it if someone did that to me?". Yep...this is something I have to consciously do.
When I was a kid, I used to look at other people like moving, talking things. I saw nothing in their eyes,...they looked dead to me...but still walking and talking. (Hard to explain) All I could feel were emotions coming from them (usually hatred).
When I finally taught myself to look at someone's eyes and body language (that took a very long time), I began to see so much more. People are not dead automatons. Their eyes and facial expressions tell so much and they correlated with the emotions I was feeling.
You know, I think learning to read books was easier for me... I learned to read at 3...it's taken me over 25 years to learn about emotions and body language as they emanate from NT's.
Even harder still is talking to other autistics! I keep having to revert back to my natural way of speaking, otherwise they get offended or confused because I'm talking like a NT.
*sigh* I just can't win.
Well, I find the same goes for most NT's. They don't seem to think that autistics have feelings, dreams and intelligence as well. Often, we are seen as walking automatons who are normal people that are seemingly "dead" or "trapped" and need to be brought out.
Autistics may not be recognizing all of the feelings and signals NT's are emitting, but I find NT's just as incapable of doing the same for autistics. I cannot begin to count how many times someone has misinterpreted my signals, feelings and such!
When I talk to some people, I keep thinking "We're both speaking English here...what is it you're not getting? What am I not saying right?"
A mother said on a mailing list: "Finally, I stopped being hung up on the label and started getting to know my {child] who who [my child] is."
That is something so many people forget. Each autistic is different, each has different needs and different issues and different ways to deal with said issues.
They're so busy feeling sorry for themselves as parents of autistic children, that they tend to forget that it can suck just as much, if not more, to *be* the autistic child to whom no one gives any credence!
It was not fun for me to be a child any more than it was for my parents to raise me. I feel bad for them, but they chose to have me.
I didn't ask to be born the way I was.
I could see it now (warning" Sarcasm alert):
"Yes, I would like to be born with a developmental disability that will make my life and the lives of those around me a big pain in the butt. I want to have all sorts of problems with my body and nervous system and I'd like for people to constantly misunderstand me, write me off and think I'm something that I'm not. I'd like to have problems learning certain things and I want to always be on edge.
"I'd like to feel sick all the time and not be able to express what I'm feeling so I'll never get treated properly and people can think I'm just a hypochondriac.
"I'd like to have less of a chance of succeeding in life than the next guy...oh yes, can you make me female as well just so I can *really* experience that whole Glass Ceiling effect from both the autistic and female perspective? That would just be awesome!
"I want to really have poor chances of getting anywhere in life cuz I'm just a sado-masochist at heart!
I also want every one else around me to feel like crap too cuz I'm also an insensitive clod...what? Insensitivity comes as part of the Autism Deluxe Package Deal?? Whoo hoo! Score!
"Where do I sign up?"
Ok...sarcasm has passed. Sorry 'bout that...just a little burst of anger and frustration.
They could have gotten rid of me, put me up for adoption, etc. But they didn't. They chose to keep and raise me. They accepted their responsibility as parents and I am very grateful for that.
I am also even more grateful for the fact that I got far enough ahead in life that I can now look after them as they age.
Kids, even autistic ones, can usually perceive some sort of negativity towards them and it helps no one in the end. The kid grows up feeling inadequate, defective and unable to do anything, while the parents have to deal with supporting their children even more.
Yeah, I know..."try being the parent". (See, there goes the theory of mind prompting again...)
I'll never be a parent, but I've grown up with the stigma, negative press and all that which is out there about autism. I've spent my life proving that I am not the worst case scenario that seems to get shown in the brochures, websites, blogs, movies and TV.
Who's going to hire someone who has that "epidemic" that is just a "devastating" and "tragic" bloe to families?
Why not just stamp "sociopath" on my forehead?
I'd probably have more a running chance of getting a job with &that* label than I do being an honest, hardworking autistic person!
Look at most CEO's and such out there - most of them fit the psychological profile of a sociopath and they're at the top of the work food chain! (Sociopath does not always equal serial killer, by the way. Sociopaths just have no conscience and get what they want ruthlessly.)
I've spent my whole life fighting to be heard, to be accepted and to be allowed to make my own way in the world without people thinking I'm incapable of this or that. I know how hard it was to raise *myself*.
If I had an autistic child who had to go through what I have, I'd be going postal on someone's butt at least twice a day...which would be very bad. I wouldn't want my kid to live through what I have...and I've done really well! I'd hate to see any child go through what a lot of other autistic people have to go through. I was lucky!
Theory of mind works *both* ways, it seems. Just as communication does.
Thursday, April 19, 2007
Communication Breakdown?
What bothers me is not so much the ABA/IBI itself (I have my own personal experiences and issues with it), but the fact that people are seeing this is the one and *only* treatment for autism...which it is not.
I have seen people (mostly parents) saying that the "Neurodiversity Community" (adult autistics in other words) are saying that therapy (ABA/IBI) is a form of disrespect and parents wanting therapy are hindering their children.
"What we have here, folks, is a failure to communicate." ...and isn't that what the therapies are addressing?
What's going on is that both sides of adults are not communicating properly...it's not one -sided in this case.
The ND's or Neurodiversity advocates want to see acceptance (that being the true meaning of the word - accepting us a valid human beings, not as "bad dogs") and *appropriate* treatment for autistic kids, so that they can grow up to be happy, healthy, independent (as possible) and successful adults in their own right.
Is that not what the parents want too? Appropriate treatment so their kids can grow up to a nice adulthood? I hope so...
Where the rift is happening is with regards to what this "appropriate" treatment is, in my opinion.
Parents are being told that ABA/IBI is the one, the only, truly effective therapy for autism that there is. Therefore, they want it...and why not? They're parents doing what parents do: trying to do what's best for their kids' future. How can anyone fault that?
The problems with ABA/IBI being the "one and only"occur here:
1. It's darned expensive...Yikes! Looking at just the Canadian range of cost for *one* child: $20,000.00 - $80,000.00...multiply that by how many autistic kids we have in this country alone (if we want to get on the epidemic bandwagon here) and you get a *lot* of money that the government is going to have to spend if this is the "one and only" way to go. Holy cash cow, Batman!
2. It's not that well regulated. There are lots of different types of ABA. Some have called them the "Good ABA" and the "Bad ABA" or even the "Traditional ABA" (usually equated with "Bad ABA"). Yes, one has to be trained to be an ABA therapist, but I've seen enough people here talking about how different said therapists are. Some are downright oppressive, to the point of teetering on abuse. Others are very compassionate and are giving the kids breaks, addressing their needs, etc. There's no consistency. Why? Because you're dealing with individual therapists - people with their own beliefs, perspectives, experiences and practices.
3. It's not really proven to be all that effective in the long term. It may work wonders in the short term, but if the causes are not addressed, then they are going to get worse and eventually "crap" is going to hit the fan...when that person is an adult and no longer covered by childhood services.
4. No one therapy works for everyone. Not all heart patients, schizophrenics, epileptics or diabatics are going to do well on the same medication. Each person is different and has different needs. Autism is no different. By limiting treatment to just ABA/IBI, some kids who might otherwise thrive on another form of treatment may end up being set up for a huge failure. I don't think any parent wants to see their options limited that badly, do they?
5. It's not really addressing the causes. Many have said that certain behaviours are caused my things that ABA is not seeing or addressing.
6. It is an educational method, not a medical treatment. Pantoloc for my acid reflux is a medical treatment. Physiotherapy for a sports injury is a medical treatment. Teaching a child how to our how not to do things is teaching. Disciplining or rewarding a child for poor or good behaviour is simple teaching. Parents and teachers do it all the time with all types of kids. It may work, but it's just teaching. I would not pay that kind of money for someone to teach my kid, if I had one. I could do that myself.
In fact, parents are doing behaviour modifcation all the time "Johnny, stop chasing the cat or else you're going for a serious time out!" "Jenny, good job on winning the spelling bee. I'm so proud of you!"
You can call it therapy all you like, and behavioural therapy is a type of therapy, but in the end, the medical problem that is causing the behaviour problem is still not being treated, is it? It's not a complete therapuetic resolution.
What many of us on the spectrum want is a complete and actually effective treatment. I would love for some of my core problems to not be problems anymore. I also want people to see me as useful, valuable and valid, not just as something that needs to be eliminated or forced to conform with no benefit to myself. I also don't want to be equated with a travesty, disease or epidemic, thanks.
I want to be accepted a human being. I'd like, for once, for someone to recognize the good things I can do as an autistic adult. I'd like for people to give their kids a future where they will know they are loved, valued and accepted. I'd like for them to be able to grow up and be happy, healthy, independent (as possible) and successful adults in their own right.
I think we are all on the same page: we want a bright future for us and our kids.
I have my own personal experience reasons for not liking ABA...I had some bad therapists in a time when "bad ABA" seemed to be the only one in existence.
I believe that, until we find something that really addresses everything, that really works, it's going to be a struggle for all involved.
I think we need more communication...on both ends of the spectrum and beyond.
Is that reasonable enough? Am I making sense?
Are we not all on the same team?
I have seen people (mostly parents) saying that the "Neurodiversity Community" (adult autistics in other words) are saying that therapy (ABA/IBI) is a form of disrespect and parents wanting therapy are hindering their children.
"What we have here, folks, is a failure to communicate." ...and isn't that what the therapies are addressing?
What's going on is that both sides of adults are not communicating properly...it's not one -sided in this case.
The ND's or Neurodiversity advocates want to see acceptance (that being the true meaning of the word - accepting us a valid human beings, not as "bad dogs") and *appropriate* treatment for autistic kids, so that they can grow up to be happy, healthy, independent (as possible) and successful adults in their own right.
Is that not what the parents want too? Appropriate treatment so their kids can grow up to a nice adulthood? I hope so...
Where the rift is happening is with regards to what this "appropriate" treatment is, in my opinion.
Parents are being told that ABA/IBI is the one, the only, truly effective therapy for autism that there is. Therefore, they want it...and why not? They're parents doing what parents do: trying to do what's best for their kids' future. How can anyone fault that?
The problems with ABA/IBI being the "one and only"occur here:
1. It's darned expensive...Yikes! Looking at just the Canadian range of cost for *one* child: $20,000.00 - $80,000.00...multiply that by how many autistic kids we have in this country alone (if we want to get on the epidemic bandwagon here) and you get a *lot* of money that the government is going to have to spend if this is the "one and only" way to go. Holy cash cow, Batman!
2. It's not that well regulated. There are lots of different types of ABA. Some have called them the "Good ABA" and the "Bad ABA" or even the "Traditional ABA" (usually equated with "Bad ABA"). Yes, one has to be trained to be an ABA therapist, but I've seen enough people here talking about how different said therapists are. Some are downright oppressive, to the point of teetering on abuse. Others are very compassionate and are giving the kids breaks, addressing their needs, etc. There's no consistency. Why? Because you're dealing with individual therapists - people with their own beliefs, perspectives, experiences and practices.
3. It's not really proven to be all that effective in the long term. It may work wonders in the short term, but if the causes are not addressed, then they are going to get worse and eventually "crap" is going to hit the fan...when that person is an adult and no longer covered by childhood services.
4. No one therapy works for everyone. Not all heart patients, schizophrenics, epileptics or diabatics are going to do well on the same medication. Each person is different and has different needs. Autism is no different. By limiting treatment to just ABA/IBI, some kids who might otherwise thrive on another form of treatment may end up being set up for a huge failure. I don't think any parent wants to see their options limited that badly, do they?
5. It's not really addressing the causes. Many have said that certain behaviours are caused my things that ABA is not seeing or addressing.
6. It is an educational method, not a medical treatment. Pantoloc for my acid reflux is a medical treatment. Physiotherapy for a sports injury is a medical treatment. Teaching a child how to our how not to do things is teaching. Disciplining or rewarding a child for poor or good behaviour is simple teaching. Parents and teachers do it all the time with all types of kids. It may work, but it's just teaching. I would not pay that kind of money for someone to teach my kid, if I had one. I could do that myself.
In fact, parents are doing behaviour modifcation all the time "Johnny, stop chasing the cat or else you're going for a serious time out!" "Jenny, good job on winning the spelling bee. I'm so proud of you!"
You can call it therapy all you like, and behavioural therapy is a type of therapy, but in the end, the medical problem that is causing the behaviour problem is still not being treated, is it? It's not a complete therapuetic resolution.
What many of us on the spectrum want is a complete and actually effective treatment. I would love for some of my core problems to not be problems anymore. I also want people to see me as useful, valuable and valid, not just as something that needs to be eliminated or forced to conform with no benefit to myself. I also don't want to be equated with a travesty, disease or epidemic, thanks.
I want to be accepted a human being. I'd like, for once, for someone to recognize the good things I can do as an autistic adult. I'd like for people to give their kids a future where they will know they are loved, valued and accepted. I'd like for them to be able to grow up and be happy, healthy, independent (as possible) and successful adults in their own right.
I think we are all on the same page: we want a bright future for us and our kids.
I have my own personal experience reasons for not liking ABA...I had some bad therapists in a time when "bad ABA" seemed to be the only one in existence.
I believe that, until we find something that really addresses everything, that really works, it's going to be a struggle for all involved.
I think we need more communication...on both ends of the spectrum and beyond.
Is that reasonable enough? Am I making sense?
Are we not all on the same team?
Wednesday, April 18, 2007
New Word in the English Language: Disablism
Anyone who knows me knows that I am bit of a stickler when it comes to "inventing" words to make a point. My husband is even worse when it comes to being a bit annoyed by this.
However, this one struck me as interesting.
A friend's blog has a link to "May First: Blogging Against Disablism Day" http://blobolobolob.blogspot.com/2006/05/blogging-against-disablism-day.html
The definition and explanation behind the creation of this word can be found here: http://labracknell.blogspot.com/2006/04/badd-entry.html
The definition of the word is: "Disablism (noun): Discriminatory, opressive or abusive behaviour arising from the belief that disabled people are inferior to others."
A noble cause, to be sure, but there are already so many fine words in the English language: "Bigotry", "Ignorance", "Abuse", "Discrimination".... I could go on, but I think the point's been made.
Ah, but this word isolates it, much like "racism" or "sexism".
"Disablist" for a person who is into "Disablism"?
It doesn't really work for me, but let's leave the semantics of linguistics behind and focus on the issue being examined: Discrimination, abuse, opression, etc. against disabled people because certain individuals believe disabled folks are "sub-par", "sub-human", and "inferior". (...and more great words already existing in our language)
I don't consider myself disabled. I can walk, talk and do a lot of things most folks can do. I am neurologically different and perhaps lacking in some areas, but I challenge anyone here to find the "perfect" person.
However, just because I don't see myself as disabled, doesn't mean others don't once they hear I'm on the Autistic Spectrum.
What are they expecting? Rain Man?
Why don't I forget to wear underwear one day and then prattle on and on about it while we drive to K-Mart? Perhaps I will fit someone's description of autism that way? (Yes, I'm being sarcastic)
I've been up and down when it comes to admitting who I am in this regard. Up until I was 13, I didn't know I even was autistic. I was told by my mother that I was "sick" as a child, but I was better. (Ah the ignorance of people - I had ABA for 6 months and I was instantly cured. Sure.)
At the age of 13, I got "into" psychology as only autistic people can and started reading the university textbooks about autism. None of them described me. I was going to school, I could read, write, talk, make a few friends and all that. I wasn't wandering around, banging my head on the wall or flapping my hands. I couldn't possibly be autistic!
There started about 10 years of denial....
It went all right until a few months before my 24th birthday.
I was working two jobs, 7 days a week for over two years. Often I'd work 12 hours or more a day. This is enough to wear anyone out, of course, but I got very ill. I couldn't eat or drink for 3 months, dropped 50 pounds in a couple of weeks, and started having panic attacks.
At which point, I began to notice some other things: pacing back and forth and hand-flapping. Hand flapping? I couldn't work, socialize or anything during this time. I was fixated and fearful of leaving the house.
I called my mother who bemoaned the fact that I was becoming "autistic again". Autistic *again*?
After coming pretty close to death, I did some priority changing in my life. I quit one of my jobs, moved house twice and started in a new line of work. I started feeling better.
I also started researching autism more and joined a few mailing lists. Was it possible to be supposedly cured and then become autistic again??
I learned very quickly that, no, that is not the case. You're born autistic, you'll die autistic. That's the truth. That's the way it is.
I learned that autism is not just a childhood thing - it's with you your whole life. When you try to pretend to be normal, it catches up to you. Did it ever for me!
So...here I was was, 24 years old, recovering from this illness after being put on medication for the acid reflux which nearly burned a hole in my esophagus, having to look at my limits and learning about how to deal with being autistic for the first time in my life, despite being born autistic.
For years prior to that illness, I looked back on my life as a young adult and saw that I did have some problems:
1. I could not relax. Seriously! I remember sitting in my apartment, with my mind running wild one day and thinking "I should be doing something". I had come home from work, cleaned the catbox, made supper and was tired. So I thought "Well, maybe I should make a cup of tea, get some ginger cookies and just relax on the couch".
I got the tea, cookies and parked my butt on the couch with my feet up, all ready to relax!
I couldn't. I started to panic and freak out "I should be doing something! I can't just sit here and space out!" That led to a panic attack and I spent the next hour pacing back and forth, feeling worse and worse, until I was so tired I fell down from exhaustion.
This was a regular occurrence. Was my brain telling me I was not allowed to relax? Did I always have to be engaged with *something*? (As a kid, I was always busy with artwork, or reading or doing something)
I look at the hours and hours ABA therapists put little kids through and I wonder. I look at the parents coming onto the mailing lists saying "My kid spaces out and stims, how can I stop it?" and I wonder.
Was this my problem? Was this inability to relax "conditioned" into me when I was very small?
Looking at my medical records, there is a lot of mention of something I used to do a lot as a kid: I'd sit for about 10 minutes just staring into space, not responding...and then when someone touched me and told me to snap out of it, I'd be all freaked out for a bit. They thought it was seizures, but tests came up normal...no seizures. Then they thought it was something they had to "train" out of me.
I recognize those "episodes" throughout my life and I still do it...it's a form of spacing out and it's relaxing to me. I'll sit for a few minutes, stare ahead and just "slip" into another state of being. I'm conscious, I know what's going on, but I'm in an alpha state it seems. I'm all relaxed and not even thinking anything. I then shake my head to get out of it and life goes on.
If someone jars me out of that state, my heart rate goes up and I have this feeling like I've just been caught doing something illegal or embarrassing.
The problem is, when I do it, I cannot properly relax since I've been told all my life that this is "pathological", "wrong", "abnormal" (more words). I now have to tell myself, "No...it's ok. This is my way of relaxing. I'm 32 years old and I am an adult. I am allowed to do this...to heck with what they say." It is now more relaxing and I'll do it when I come home from work, or even during my lunch break.
I spent a lot of time after my illness in 1999 giving myself permission: permission to relax, permission to space out...permission to take care of myself first! That is a sad state when one has to consciously give oneself permission to do these simple acts of self-kindness because it has been "programmed" into one that doing these things is wrong.
I now can relax with zeal and I don't care what others think. I'll space out on the couch and fall asleep like my dad always does and no one faults me for it. My husband just lets me stay on the couch, because as soon as I get off it to try and go to bed, I'm up all night. I sleep in spurts and when I'm up, I'm up! People know not to wake me or I'm in instant "awake mode".
2. I could not fall asleep very well. Despite two jobs and being freakin' tired, I couldn't fall asleep! My mind would be racing so hard, I couldn't sleep. Some nights I'd have a panic attack while trying to fall asleep, which would lead to another fun filled hour of feeling ill, pacing back and forth and falling down from exhaustion.
This was nothing new...I was like that as a kid and then a teenager as well. I sleep when I want to. I will not sleep when I am not ready to. Unfortunately, I never seemed to be ready to!
I've got babysitters from my childhood who could tell you stories about what I was like when someone tried to tell me when to go to bed. One even has a nice set of false teeth because of an altercation we had when I was five. I had almost superhuman strength when I was angry and I knocked her teeth out. (I still feel bad about that)
At that institution, I was about 2 and they put me in a room to go to sleep. I was not tired (no surprise there) and there was this big, burly man who sat outside my door in case any of us on the floor got into any mischief. He had good ears and could hear a bug fart on the other side of the building.
What he did not hear was me methodically and very quietly dismantling every piece of furniture in the room: bed, desk, tables...everything. I took out every single screw with my small fingers and put everything into neat little piles when I was done. I was 2 and should not have been able to do that...but I did. (I mentioned a great deal of strength in my childhood...my adrenaline must have been in overdrive!) The big man didn't hear any of it.
When the big man, my mother and the doctor came in the next morning to see how I slept (since I was so quiet, you know), I was sitting on the floor and my room was in neat little piles around me. Not a single piece of furniture was left unassembled. Looking back at that, I'm quite proud of that little achievement!
Is it any wonder that I just *love* assembling build-it-yourself furniture to this very day??
Anyway...why couldn't I sleep? Most times, my body was tired, especially after a rough day at school (every day was a rough day) pretending to be normal.
My brain, however, was in constant overdrive. I couldn't even type out all the things that will race through my head in a minute...I can't type that fast and I type 70 words per minute!
How to deal with that? As a kid, strapping me to a bed was one way (which didn't happen too often since my mother actually stayed at the institution with me and would do her best to prevent them from drugging or restraining me). Unfortunately, it was not an effective way. I never learned to quiet my mind until I was about 23...same time as my illness.
I've always been interested in dreams, dream interpretation and lucid dreaming. I've been ccontrolling my dreams since I was about 6. (This is, of course, after I can actually fall asleep)
Part of remembering dreams comes from the simple act of affirming before bed "I will remember my dreams". Do it every night, over and over and it does work!
So...I took that concept and applied it to my restless mind. I told myself every night as I went to bed "I am not allowed to think or worry in in bed. My worries are safe and will be there when I get up in the morning."
I then instituted a "ritual" of saying prayers before bed. I'd light candles on my altar, light some incense and do this whole grandiose ritual thing. Within a few months, I would just have to light the candles and incense, and then park myself in front of the altar and I was in instant sleep mode. No thoughts, body tired and ready to sleep!
After prayers, I'd methodically blow out the caandles, extinguish the incense and bless myself, and then go to bed and fall asleep within minutes.
A simple little bedtime ritual and a cognitive behavioural affirmation was all I needed.
I can now just start saying the prayer in my head without all the candles and other stuff and feel myself instantly going into thast sleepy state. It's like clockwork, I start getting ready for my night prayers and that's it. Instant sleep.
However, I do still like to do the other things in honour of my religion. When I'm really bushed, I say the prayer as I lie in bed, or in a nice relaxing bubble bath (I have one of those cool, big soaker tubs in my bathroom!). I'm still honouring the Gods and I'm still getting to sleep right away.
I look back and think "If only I could have learned these two little techniques when I was a kid, I'd have probably felt better and slept better!"
3. I had really low self esteem and felt I had to be pleasing others all the time. That's actually a psychological problem nowadays. Did you know that? Folks go to counseling because of this!
Anyway, I grew up with the very loud and clear message that I was not normal, not worthy and as long as I acted like everyone else, no one would get hurt...least of all me. I spent my whole life trying to prove myself to be better than they thought, trying to be subservient and trying to be oh so helpful!
Autism, by the way means "Self-ism"...that's where the word comes from: the Greek for "self" - Auto...as in "Autonomy" (self rule), "Automatic" (selfacting - comes from automatos, another Greek word), "Autobiography" (story of self).
Naturally, we are often depicted as being very "into" ourselves, withdrawn, self absorbed...even selfish. Need I say where this is going to go?
Mission #1: Get the autistic person out of him/her self and interacting with others! A noble concept again, but at what cost?
If done incorrectly (as it so often is) , most autism treatments can spell very low self-esteem in the future.
If one thinks about it, one can see a connection:
At the age of 2+, kids are pretty receptive to the messages they get from their world and the people in it. Even if they are not speaking, the messages they receive are very clear. That's how they learn how to react and grow into their world. i.e.: Hand on hot stove causes small child to learn that hot stoves hurt and perhaps shouldn't be touched by little fingers!
A simple built in biological safety device to help little kiddies learn valuable lessons very quickly...a true wonder of human adaptation to one's environment. "Aint' nature great!"
Their reception and perception shapes a major portion of their lives - all in the first 5 years of life!
How are small children perceiving the actions being taken in the standaard therapies for autism?
They're perceiving their world in the way that they are and that might be already a problem for them. They may already be learning that the world is a painful or dangerous place due to a misfiring of their own neurons or own nervous system.
Add to that someone who's making them put in 40 hours a week of intensive behavioural modification with the emphasis on extinguishing said child's survival and coping methods to that harsh perception.
What do you get?
A child who is learning very quickly that the adult world does not care about their needs, that the world does not understand what they are going through and ultimately a world that is going to treat them like they are essentially "wrong" and must be changed.
Sound extreme? Ask the many adults who have been through this what they think. They'd likely have a similar story to tell you.
I grew up thinking I was "wrong"...something was wrong with me. What I did was wrong, my problems were not real, what I did was wrong, how I coped was wrong.
I was just wrong, wrong , wrong in all aspects of my life! Wow! What a self esteem builder that is! (sarc.)
Even in simple psychology classes, self-help books and even in my high school Career and Life Management (CALM) course; I learned about the very simple yet profound concept of "labelling".
Psychologists know what labelling is, right? For the rest who may not know what it is by this particular "label"...
In really simple English, labelling is this: "When someone calls you something long enough, you begin to believe it, and when you begin to believe it, you begin to live it, and then it can shape your whole destiny."
Now, you most likely know what I mean...you've all heard it before. "If you keep telling yourself that you're going to fail you will!" is the most common phrase I hear in this regard. You've likely been told that by your mother, a teacher or even a good friend.
Labelling is very well understood by everyone.
Autistics are not immune to labelling. Most autistics, being as sensitive to their surroundings as they are, are probably even more susceptible to falling into a negative labelling trap than most folks are.
Looking at this concept and the concept of most behaviourist programs, what labelling is happening here?
The child is repeatedly being told something - "What you are doing is wrong...do it my way, see it my way...be normal!" 40 hours a week, 8 hours a day (sometimes with only 5 minutes for lunch - if I only got 5 minutes for lunch at work, my boss would be in for a riot!), 5 days a week...etc, etc., etc.
The child "learns" not to do it his way and thus the label is slapped on: "What I am doing is wrong, therefore I am wrong...." "I am abnormal, I must be normal to fit in."
He believes it, lives it...and then what? It shapes his life. [10 points for you if that was your answer too. :)]
He will go through life, like many of us, believing he is just plain wrong, abnormal, unworthy... subhuman.
So...how does this fit in with my intial topic? Have I gone off on a completely different tangent?
I'm autistic, not ADD, so there is a logical point to this and I have not just gone off on a different topic altogether.
Again, the definition of disablism: "Disablism (noun): Discriminatory, opressive or abusive behaviour arising from the belief that disabled people are inferior to others."
"The belief that disabled people are inferior to others."
We are taught that we are inferior to others from day one. We're wierd, abnormal, socially inadept, wrong...inferior.
We must please others, we must act as they do, do as they do...even if it does not make us happy; even if that not allow us to use our own special gifts; even if that is at the expense of our quality of life!
Now, how does this fit in with me as an adult?
Well, I remember back in 2003, I was on the evening news; quite proud of how "well" I have done for myself: IT job, engagement, yadda, yadda, yadda.
My dad saw it and had a bird! "Do they know about your condition at work??" He said.
"No..." I replied.
"Well, they will now...you might lose your job over this!" He said.
"If I do, someone's getting their ass sued big time!" I replied. I had read a news story of a woman in the USA getting quite a hefty sum of money after suing her work place (and winning) after they treated her "differently"/refused her promotions when it was revealed that she had Asperger's Syndrome.
But I was worried.
To add to my worry, a news reporter from the local paper was there too and had said that my interview would be in the health and lifestyle section of the paper...I had been cool with that.
Imagine my shock when I picked up the paper a few weeks later to find my face in huge, full, brilliant colour with the label of autism...on the front page!!! Eeeek!!
Just a week before, I had been hanging around in the hardware lab with the guys and one of them mentioned autism and then pretended to be "retarded". I said nothing. He looked at me differently after that article was published.
How many other people were looking at me differently?
It was not a negative response I received, but a positive one. I got hugs, and people said how good it was that I could come out about it and show that there is a chance of success. Sheesh, I might as well have been "coming out of the closet" about an alternative lifestyle!
My boss joked about me being able to count cards in poker and I told her that I'm miserable at cards and would be a sure loss if I went and gambled. I suck at it!
What if I changed jobs?
What if someone saw my name associated with autism, since employers really love using Google to see who they're hiring?
Would that prevent me from being hired?
And if I did get hired, would I ever progress?
Would I ever go anywhere in the company?
Would I be hindered in my career path by it?
Would the label of autism be plastered to my head like a scarlet letter A? I look at the publicity autism gets and it's not positive for me.
Words like "devastating", "tragic", "hopeless", "epidemic" and then newspaper articles like "Autism is a financial burden on everyone" come out.
I've heard it said that autism is worse than cancer or even death.
I'd rather be autistic than have cancer, thanks.
Some days I wonder if it's better to be autistic or dead, though...
That's how societies and parents get money to further their cause for treatments like ABA, which already do a lot to destroy a person as it is.
Need we add this insult to injury?
Not great PR for me should it get out to future employers that I'm autistic. Not good PR at all.
It doesn't matter what I do in my life, the speeches I make, the raises I get, the houses I buy, etc.
Autism is a label that has a lot of very negative connotations to it!
I legally changed my name last year and I keep my autism stuff either with my old name or I just stay very anonymous (i.e.: no full name anywhere on this blog).
Disablism is alive and well in the autism community, folks. Alive and kicking as they'd say!
Of course, no one will ever admit it...but it's there and it's ugly. Uglier than even the abuse, discrimination and dehumanising actions against other disabled people.
People in wheelchairs get better treatment than autistic people do by society.
Blind and deaf people get better treatment than autistic people do.
Right now, autism is seen as a mental illness and it's getting the same wonderful (sarc.) attention and stigma!
I don't want to lose out on opportunities because I'm autistic. I don't want to hide in a closet forever either.
On May 1st, let's blog against Disablism...and then act against it every other day after that too!
It's one step towards a positive perspective...but oh, there is sooo much work to do!
However, this one struck me as interesting.
A friend's blog has a link to "May First: Blogging Against Disablism Day" http://blobolobolob.blogspot.com/2006/05/blogging-against-disablism-day.html
The definition and explanation behind the creation of this word can be found here: http://labracknell.blogspot.com/2006/04/badd-entry.html
The definition of the word is: "Disablism (noun): Discriminatory, opressive or abusive behaviour arising from the belief that disabled people are inferior to others."
A noble cause, to be sure, but there are already so many fine words in the English language: "Bigotry", "Ignorance", "Abuse", "Discrimination".... I could go on, but I think the point's been made.
Ah, but this word isolates it, much like "racism" or "sexism".
"Disablist" for a person who is into "Disablism"?
It doesn't really work for me, but let's leave the semantics of linguistics behind and focus on the issue being examined: Discrimination, abuse, opression, etc. against disabled people because certain individuals believe disabled folks are "sub-par", "sub-human", and "inferior". (...and more great words already existing in our language)
I don't consider myself disabled. I can walk, talk and do a lot of things most folks can do. I am neurologically different and perhaps lacking in some areas, but I challenge anyone here to find the "perfect" person.
However, just because I don't see myself as disabled, doesn't mean others don't once they hear I'm on the Autistic Spectrum.
What are they expecting? Rain Man?
Why don't I forget to wear underwear one day and then prattle on and on about it while we drive to K-Mart? Perhaps I will fit someone's description of autism that way? (Yes, I'm being sarcastic)
I've been up and down when it comes to admitting who I am in this regard. Up until I was 13, I didn't know I even was autistic. I was told by my mother that I was "sick" as a child, but I was better. (Ah the ignorance of people - I had ABA for 6 months and I was instantly cured. Sure.)
At the age of 13, I got "into" psychology as only autistic people can and started reading the university textbooks about autism. None of them described me. I was going to school, I could read, write, talk, make a few friends and all that. I wasn't wandering around, banging my head on the wall or flapping my hands. I couldn't possibly be autistic!
There started about 10 years of denial....
It went all right until a few months before my 24th birthday.
I was working two jobs, 7 days a week for over two years. Often I'd work 12 hours or more a day. This is enough to wear anyone out, of course, but I got very ill. I couldn't eat or drink for 3 months, dropped 50 pounds in a couple of weeks, and started having panic attacks.
At which point, I began to notice some other things: pacing back and forth and hand-flapping. Hand flapping? I couldn't work, socialize or anything during this time. I was fixated and fearful of leaving the house.
I called my mother who bemoaned the fact that I was becoming "autistic again". Autistic *again*?
After coming pretty close to death, I did some priority changing in my life. I quit one of my jobs, moved house twice and started in a new line of work. I started feeling better.
I also started researching autism more and joined a few mailing lists. Was it possible to be supposedly cured and then become autistic again??
I learned very quickly that, no, that is not the case. You're born autistic, you'll die autistic. That's the truth. That's the way it is.
I learned that autism is not just a childhood thing - it's with you your whole life. When you try to pretend to be normal, it catches up to you. Did it ever for me!
So...here I was was, 24 years old, recovering from this illness after being put on medication for the acid reflux which nearly burned a hole in my esophagus, having to look at my limits and learning about how to deal with being autistic for the first time in my life, despite being born autistic.
For years prior to that illness, I looked back on my life as a young adult and saw that I did have some problems:
1. I could not relax. Seriously! I remember sitting in my apartment, with my mind running wild one day and thinking "I should be doing something". I had come home from work, cleaned the catbox, made supper and was tired. So I thought "Well, maybe I should make a cup of tea, get some ginger cookies and just relax on the couch".
I got the tea, cookies and parked my butt on the couch with my feet up, all ready to relax!
I couldn't. I started to panic and freak out "I should be doing something! I can't just sit here and space out!" That led to a panic attack and I spent the next hour pacing back and forth, feeling worse and worse, until I was so tired I fell down from exhaustion.
This was a regular occurrence. Was my brain telling me I was not allowed to relax? Did I always have to be engaged with *something*? (As a kid, I was always busy with artwork, or reading or doing something)
I look at the hours and hours ABA therapists put little kids through and I wonder. I look at the parents coming onto the mailing lists saying "My kid spaces out and stims, how can I stop it?" and I wonder.
Was this my problem? Was this inability to relax "conditioned" into me when I was very small?
Looking at my medical records, there is a lot of mention of something I used to do a lot as a kid: I'd sit for about 10 minutes just staring into space, not responding...and then when someone touched me and told me to snap out of it, I'd be all freaked out for a bit. They thought it was seizures, but tests came up normal...no seizures. Then they thought it was something they had to "train" out of me.
I recognize those "episodes" throughout my life and I still do it...it's a form of spacing out and it's relaxing to me. I'll sit for a few minutes, stare ahead and just "slip" into another state of being. I'm conscious, I know what's going on, but I'm in an alpha state it seems. I'm all relaxed and not even thinking anything. I then shake my head to get out of it and life goes on.
If someone jars me out of that state, my heart rate goes up and I have this feeling like I've just been caught doing something illegal or embarrassing.
The problem is, when I do it, I cannot properly relax since I've been told all my life that this is "pathological", "wrong", "abnormal" (more words). I now have to tell myself, "No...it's ok. This is my way of relaxing. I'm 32 years old and I am an adult. I am allowed to do this...to heck with what they say." It is now more relaxing and I'll do it when I come home from work, or even during my lunch break.
I spent a lot of time after my illness in 1999 giving myself permission: permission to relax, permission to space out...permission to take care of myself first! That is a sad state when one has to consciously give oneself permission to do these simple acts of self-kindness because it has been "programmed" into one that doing these things is wrong.
I now can relax with zeal and I don't care what others think. I'll space out on the couch and fall asleep like my dad always does and no one faults me for it. My husband just lets me stay on the couch, because as soon as I get off it to try and go to bed, I'm up all night. I sleep in spurts and when I'm up, I'm up! People know not to wake me or I'm in instant "awake mode".
2. I could not fall asleep very well. Despite two jobs and being freakin' tired, I couldn't fall asleep! My mind would be racing so hard, I couldn't sleep. Some nights I'd have a panic attack while trying to fall asleep, which would lead to another fun filled hour of feeling ill, pacing back and forth and falling down from exhaustion.
This was nothing new...I was like that as a kid and then a teenager as well. I sleep when I want to. I will not sleep when I am not ready to. Unfortunately, I never seemed to be ready to!
I've got babysitters from my childhood who could tell you stories about what I was like when someone tried to tell me when to go to bed. One even has a nice set of false teeth because of an altercation we had when I was five. I had almost superhuman strength when I was angry and I knocked her teeth out. (I still feel bad about that)
At that institution, I was about 2 and they put me in a room to go to sleep. I was not tired (no surprise there) and there was this big, burly man who sat outside my door in case any of us on the floor got into any mischief. He had good ears and could hear a bug fart on the other side of the building.
What he did not hear was me methodically and very quietly dismantling every piece of furniture in the room: bed, desk, tables...everything. I took out every single screw with my small fingers and put everything into neat little piles when I was done. I was 2 and should not have been able to do that...but I did. (I mentioned a great deal of strength in my childhood...my adrenaline must have been in overdrive!) The big man didn't hear any of it.
When the big man, my mother and the doctor came in the next morning to see how I slept (since I was so quiet, you know), I was sitting on the floor and my room was in neat little piles around me. Not a single piece of furniture was left unassembled. Looking back at that, I'm quite proud of that little achievement!
Is it any wonder that I just *love* assembling build-it-yourself furniture to this very day??
Anyway...why couldn't I sleep? Most times, my body was tired, especially after a rough day at school (every day was a rough day) pretending to be normal.
My brain, however, was in constant overdrive. I couldn't even type out all the things that will race through my head in a minute...I can't type that fast and I type 70 words per minute!
How to deal with that? As a kid, strapping me to a bed was one way (which didn't happen too often since my mother actually stayed at the institution with me and would do her best to prevent them from drugging or restraining me). Unfortunately, it was not an effective way. I never learned to quiet my mind until I was about 23...same time as my illness.
I've always been interested in dreams, dream interpretation and lucid dreaming. I've been ccontrolling my dreams since I was about 6. (This is, of course, after I can actually fall asleep)
Part of remembering dreams comes from the simple act of affirming before bed "I will remember my dreams". Do it every night, over and over and it does work!
So...I took that concept and applied it to my restless mind. I told myself every night as I went to bed "I am not allowed to think or worry in in bed. My worries are safe and will be there when I get up in the morning."
I then instituted a "ritual" of saying prayers before bed. I'd light candles on my altar, light some incense and do this whole grandiose ritual thing. Within a few months, I would just have to light the candles and incense, and then park myself in front of the altar and I was in instant sleep mode. No thoughts, body tired and ready to sleep!
After prayers, I'd methodically blow out the caandles, extinguish the incense and bless myself, and then go to bed and fall asleep within minutes.
A simple little bedtime ritual and a cognitive behavioural affirmation was all I needed.
I can now just start saying the prayer in my head without all the candles and other stuff and feel myself instantly going into thast sleepy state. It's like clockwork, I start getting ready for my night prayers and that's it. Instant sleep.
However, I do still like to do the other things in honour of my religion. When I'm really bushed, I say the prayer as I lie in bed, or in a nice relaxing bubble bath (I have one of those cool, big soaker tubs in my bathroom!). I'm still honouring the Gods and I'm still getting to sleep right away.
I look back and think "If only I could have learned these two little techniques when I was a kid, I'd have probably felt better and slept better!"
3. I had really low self esteem and felt I had to be pleasing others all the time. That's actually a psychological problem nowadays. Did you know that? Folks go to counseling because of this!
Anyway, I grew up with the very loud and clear message that I was not normal, not worthy and as long as I acted like everyone else, no one would get hurt...least of all me. I spent my whole life trying to prove myself to be better than they thought, trying to be subservient and trying to be oh so helpful!
Autism, by the way means "Self-ism"...that's where the word comes from: the Greek for "self" - Auto...as in "Autonomy" (self rule), "Automatic" (selfacting - comes from automatos, another Greek word), "Autobiography" (story of self).
Naturally, we are often depicted as being very "into" ourselves, withdrawn, self absorbed...even selfish. Need I say where this is going to go?
Mission #1: Get the autistic person out of him/her self and interacting with others! A noble concept again, but at what cost?
If done incorrectly (as it so often is) , most autism treatments can spell very low self-esteem in the future.
If one thinks about it, one can see a connection:
At the age of 2+, kids are pretty receptive to the messages they get from their world and the people in it. Even if they are not speaking, the messages they receive are very clear. That's how they learn how to react and grow into their world. i.e.: Hand on hot stove causes small child to learn that hot stoves hurt and perhaps shouldn't be touched by little fingers!
A simple built in biological safety device to help little kiddies learn valuable lessons very quickly...a true wonder of human adaptation to one's environment. "Aint' nature great!"
Their reception and perception shapes a major portion of their lives - all in the first 5 years of life!
How are small children perceiving the actions being taken in the standaard therapies for autism?
They're perceiving their world in the way that they are and that might be already a problem for them. They may already be learning that the world is a painful or dangerous place due to a misfiring of their own neurons or own nervous system.
Add to that someone who's making them put in 40 hours a week of intensive behavioural modification with the emphasis on extinguishing said child's survival and coping methods to that harsh perception.
What do you get?
A child who is learning very quickly that the adult world does not care about their needs, that the world does not understand what they are going through and ultimately a world that is going to treat them like they are essentially "wrong" and must be changed.
Sound extreme? Ask the many adults who have been through this what they think. They'd likely have a similar story to tell you.
I grew up thinking I was "wrong"...something was wrong with me. What I did was wrong, my problems were not real, what I did was wrong, how I coped was wrong.
I was just wrong, wrong , wrong in all aspects of my life! Wow! What a self esteem builder that is! (sarc.)
Even in simple psychology classes, self-help books and even in my high school Career and Life Management (CALM) course; I learned about the very simple yet profound concept of "labelling".
Psychologists know what labelling is, right? For the rest who may not know what it is by this particular "label"...
In really simple English, labelling is this: "When someone calls you something long enough, you begin to believe it, and when you begin to believe it, you begin to live it, and then it can shape your whole destiny."
Now, you most likely know what I mean...you've all heard it before. "If you keep telling yourself that you're going to fail you will!" is the most common phrase I hear in this regard. You've likely been told that by your mother, a teacher or even a good friend.
Labelling is very well understood by everyone.
Autistics are not immune to labelling. Most autistics, being as sensitive to their surroundings as they are, are probably even more susceptible to falling into a negative labelling trap than most folks are.
Looking at this concept and the concept of most behaviourist programs, what labelling is happening here?
The child is repeatedly being told something - "What you are doing is wrong...do it my way, see it my way...be normal!" 40 hours a week, 8 hours a day (sometimes with only 5 minutes for lunch - if I only got 5 minutes for lunch at work, my boss would be in for a riot!), 5 days a week...etc, etc., etc.
The child "learns" not to do it his way and thus the label is slapped on: "What I am doing is wrong, therefore I am wrong...." "I am abnormal, I must be normal to fit in."
He believes it, lives it...and then what? It shapes his life. [10 points for you if that was your answer too. :)]
He will go through life, like many of us, believing he is just plain wrong, abnormal, unworthy... subhuman.
So...how does this fit in with my intial topic? Have I gone off on a completely different tangent?
I'm autistic, not ADD, so there is a logical point to this and I have not just gone off on a different topic altogether.
Again, the definition of disablism: "Disablism (noun): Discriminatory, opressive or abusive behaviour arising from the belief that disabled people are inferior to others."
"The belief that disabled people are inferior to others."
We are taught that we are inferior to others from day one. We're wierd, abnormal, socially inadept, wrong...inferior.
We must please others, we must act as they do, do as they do...even if it does not make us happy; even if that not allow us to use our own special gifts; even if that is at the expense of our quality of life!
Now, how does this fit in with me as an adult?
Well, I remember back in 2003, I was on the evening news; quite proud of how "well" I have done for myself: IT job, engagement, yadda, yadda, yadda.
My dad saw it and had a bird! "Do they know about your condition at work??" He said.
"No..." I replied.
"Well, they will now...you might lose your job over this!" He said.
"If I do, someone's getting their ass sued big time!" I replied. I had read a news story of a woman in the USA getting quite a hefty sum of money after suing her work place (and winning) after they treated her "differently"/refused her promotions when it was revealed that she had Asperger's Syndrome.
But I was worried.
To add to my worry, a news reporter from the local paper was there too and had said that my interview would be in the health and lifestyle section of the paper...I had been cool with that.
Imagine my shock when I picked up the paper a few weeks later to find my face in huge, full, brilliant colour with the label of autism...on the front page!!! Eeeek!!
Just a week before, I had been hanging around in the hardware lab with the guys and one of them mentioned autism and then pretended to be "retarded". I said nothing. He looked at me differently after that article was published.
How many other people were looking at me differently?
It was not a negative response I received, but a positive one. I got hugs, and people said how good it was that I could come out about it and show that there is a chance of success. Sheesh, I might as well have been "coming out of the closet" about an alternative lifestyle!
My boss joked about me being able to count cards in poker and I told her that I'm miserable at cards and would be a sure loss if I went and gambled. I suck at it!
What if I changed jobs?
What if someone saw my name associated with autism, since employers really love using Google to see who they're hiring?
Would that prevent me from being hired?
And if I did get hired, would I ever progress?
Would I ever go anywhere in the company?
Would I be hindered in my career path by it?
Would the label of autism be plastered to my head like a scarlet letter A? I look at the publicity autism gets and it's not positive for me.
Words like "devastating", "tragic", "hopeless", "epidemic" and then newspaper articles like "Autism is a financial burden on everyone" come out.
I've heard it said that autism is worse than cancer or even death.
I'd rather be autistic than have cancer, thanks.
Some days I wonder if it's better to be autistic or dead, though...
That's how societies and parents get money to further their cause for treatments like ABA, which already do a lot to destroy a person as it is.
Need we add this insult to injury?
Not great PR for me should it get out to future employers that I'm autistic. Not good PR at all.
It doesn't matter what I do in my life, the speeches I make, the raises I get, the houses I buy, etc.
Autism is a label that has a lot of very negative connotations to it!
I legally changed my name last year and I keep my autism stuff either with my old name or I just stay very anonymous (i.e.: no full name anywhere on this blog).
Disablism is alive and well in the autism community, folks. Alive and kicking as they'd say!
Of course, no one will ever admit it...but it's there and it's ugly. Uglier than even the abuse, discrimination and dehumanising actions against other disabled people.
People in wheelchairs get better treatment than autistic people do by society.
Blind and deaf people get better treatment than autistic people do.
Right now, autism is seen as a mental illness and it's getting the same wonderful (sarc.) attention and stigma!
I don't want to lose out on opportunities because I'm autistic. I don't want to hide in a closet forever either.
On May 1st, let's blog against Disablism...and then act against it every other day after that too!
It's one step towards a positive perspective...but oh, there is sooo much work to do!
Friday, April 13, 2007
Positive Parenting
On one of the autism lists that I am a member of, a person posted 12 steps for good parenting.
The topic of ABA and all that came up thanks to a video that was posted of a child undergoing ABA and only getting a five minute lunch break among other things.
The topic of ABA came up and the question was asked how ABA is harmful (one person on the list is pro-ABA and was aking for proof from con-ABA people).
One person suggested that perhaps autistic children are not really that different from NT children and positive parenting techniques may be helpful.
I read another poster's blog about ABA and it was mentioned that ABA is good for things that affect health, sanitation, etc. (Using ABA to keep kids from playing in a used but unflushed toilet - yes, I agree with that! Yuk!) Check out Griff's Grumbles and the posting called "The Fundamentasl Disconnect" http://griffs-grumbles.blogspot.com/2007/01/fundamental-disconnect.html
My parents raised me no different than my brother. The rukles were strict for both of us, we were part of the planning of those rules and I grew up like any other kid would...just a little different, of course.
To sum up the 12 points that were brought up about positive parenting (I do not have written permission to give the exact wording, so I've reworded them - the original post can be found here: http://groups.google.com/group/alt.support.autism/browse_thread/thread/4c3e5368e0174432/9820a7af6f9fe9bb):
1. Teach by example. Do what you would like to see your kids doing. Sounds reasonable.
2. Even when a child "misbehaves" assume that he or she is a good person who has done something against the rules. Understand that there may be an underlying cause to the behaviour.
3. Be positive when making rules or requests. Always have alternatives. I.e.: if the child is doing X behaviour, suggest trying Y instead. Keep the word "no" to a minimum. In management training, I took a course on Providing good feedback. If someone is new to the company, keep corrective feedback to just a few points so as not to overhwlm. Be positive and reinforce good work. Corrective measures should be done discreetly and with a positive slant. I believe children could benefit from this concept.
4. Explain it logically. Make sure the child is calm and is attentive. He doesn't need to make eye contact, but do ask if he is listening. Use a non-threatening tone (bland tone, no emotion) and explain why it's not a good idea to do whatever it is he's not supposed to be doing. With NT kids, it doesn't always work, but autistic kids may be more receptive and less likely to abuse this method. "Bobby, putting the cat in the bathtub full of water will scare him since cats don't like water. Cats will also fight back and scratch you, which will hurt a lot. That's why you shouldn't put Mr. Whiskers in the bath with you. " (I know...stupid example, but I did try taking the cat with me in the bath when I was 5 and learned that lesson the hard way)
5. Look for the underlying cause and set your priorities. Is ricking really such a bad thing and could there be a reason for it? Perhaps her stomach is bothering her or she is feeling overwhelmed? See if there's a reason before attempting to modify. Give the child choices of acceptable alternatives if there is no underlying problem.
6. Give warnings to transition. "You've got five minutes until you have to turn the TV off and get ready for bed." Give reasonable time to complete activities. If the child is building a model they may have to hold a piece on for 5 minutes for the glue to dry. You can try things like "When the glue dries on that wing in 5 minutes, it's time to stop and get ready to go to the store."
7. Time outs are good for both kids and adults. Anger is likely to cause an autistic child to shut down or freak out. Use time outs not as a punishment, but as "cool down time". Teach your child relaxation techniques such as counting to ten, walking away and taking some deep breaths, etc. Make sure you model the same behaviour when your anger is out of control!
8. Speak the truth - say it and mean it. Be consistent. Give one warning and then take action. All kids need to know where the proverbial "line" is and when they've crossed it...and what the consequences of crossing it are. Give time for the child to comply, but follow through. Promising threat or threatening promise, stay true to your word and your action. Kids need boundaries. Draw them well. I.e. "Johnny, you've got to the count of three to get out of that mud pussle and into the house before I come out there and bring you in myself. 1....2...." After awhile, you won't even be able to get to 3 before he comes running in.
9. Plan for the worst before it happens. There are going to be times when your child is going to melt down, blow up or have a problem. Anticipate it, warn the child and let him or her vent her feelings, etc. Accept them as valid and her feelings. Try and work through it together.
10. Keep your children in the loop. A household is not a dictatorship and kids are likely to follow rules if they help make them. Choose the rules and agree with what the consequences will be. A justice oriented autistic will probably respond really well to this one. If that child buys in because he's helping with the negotiations, you likely will never need to exact tjhe consequences since he'll either not break the rule or punish himself! (I was that way)
One of my favourite comics is called "Ozy and Millie". It's one of those anthropomorphic ones (animals who act like humans) and I usually don't like that style of comic. However, I love this one!
In one strip, Millie (who is a nonconformist, challenging but well meaning girl), gets a copy of the 'Household Constitution' from her mother, who is a lawyer. http://www.ozyandmillie.org/d/20060622.html
The constitution says "My authority is absolute. I am the Queen. I rule your fuzzy little butt".
11. Own up to your mistakes. If you want your child to own up to his mistakes, you need to own up to yours too. No double standards...especially not with an autistic child! Apologize if you screw up and make amends. Gracefully accept your child's apologies as well. Simple human courtesy, really.
12. Let your child have responsibility. Instead of calling them chores, call them the child's responsibility. If a child feels like he is contributing the household and he has respobsibilities, he's more likely to keep with it. My parents made the mistake of saying "This is our house and you're freeloading. You have to do this to pay your way." If they had said "we're all a team here and we all have to do our part since this house belongs to all of us.". they might have had an easier time getting me to do my part.
Anyway, just my ramblings for today.
The topic of ABA and all that came up thanks to a video that was posted of a child undergoing ABA and only getting a five minute lunch break among other things.
The topic of ABA came up and the question was asked how ABA is harmful (one person on the list is pro-ABA and was aking for proof from con-ABA people).
One person suggested that perhaps autistic children are not really that different from NT children and positive parenting techniques may be helpful.
I read another poster's blog about ABA and it was mentioned that ABA is good for things that affect health, sanitation, etc. (Using ABA to keep kids from playing in a used but unflushed toilet - yes, I agree with that! Yuk!) Check out Griff's Grumbles and the posting called "The Fundamentasl Disconnect" http://griffs-grumbles.blogspot.com/2007/01/fundamental-disconnect.html
My parents raised me no different than my brother. The rukles were strict for both of us, we were part of the planning of those rules and I grew up like any other kid would...just a little different, of course.
To sum up the 12 points that were brought up about positive parenting (I do not have written permission to give the exact wording, so I've reworded them - the original post can be found here: http://groups.google.com/group/alt.support.autism/browse_thread/thread/4c3e5368e0174432/9820a7af6f9fe9bb):
1. Teach by example. Do what you would like to see your kids doing. Sounds reasonable.
2. Even when a child "misbehaves" assume that he or she is a good person who has done something against the rules. Understand that there may be an underlying cause to the behaviour.
3. Be positive when making rules or requests. Always have alternatives. I.e.: if the child is doing X behaviour, suggest trying Y instead. Keep the word "no" to a minimum. In management training, I took a course on Providing good feedback. If someone is new to the company, keep corrective feedback to just a few points so as not to overhwlm. Be positive and reinforce good work. Corrective measures should be done discreetly and with a positive slant. I believe children could benefit from this concept.
4. Explain it logically. Make sure the child is calm and is attentive. He doesn't need to make eye contact, but do ask if he is listening. Use a non-threatening tone (bland tone, no emotion) and explain why it's not a good idea to do whatever it is he's not supposed to be doing. With NT kids, it doesn't always work, but autistic kids may be more receptive and less likely to abuse this method. "Bobby, putting the cat in the bathtub full of water will scare him since cats don't like water. Cats will also fight back and scratch you, which will hurt a lot. That's why you shouldn't put Mr. Whiskers in the bath with you. " (I know...stupid example, but I did try taking the cat with me in the bath when I was 5 and learned that lesson the hard way)
5. Look for the underlying cause and set your priorities. Is ricking really such a bad thing and could there be a reason for it? Perhaps her stomach is bothering her or she is feeling overwhelmed? See if there's a reason before attempting to modify. Give the child choices of acceptable alternatives if there is no underlying problem.
6. Give warnings to transition. "You've got five minutes until you have to turn the TV off and get ready for bed." Give reasonable time to complete activities. If the child is building a model they may have to hold a piece on for 5 minutes for the glue to dry. You can try things like "When the glue dries on that wing in 5 minutes, it's time to stop and get ready to go to the store."
7. Time outs are good for both kids and adults. Anger is likely to cause an autistic child to shut down or freak out. Use time outs not as a punishment, but as "cool down time". Teach your child relaxation techniques such as counting to ten, walking away and taking some deep breaths, etc. Make sure you model the same behaviour when your anger is out of control!
8. Speak the truth - say it and mean it. Be consistent. Give one warning and then take action. All kids need to know where the proverbial "line" is and when they've crossed it...and what the consequences of crossing it are. Give time for the child to comply, but follow through. Promising threat or threatening promise, stay true to your word and your action. Kids need boundaries. Draw them well. I.e. "Johnny, you've got to the count of three to get out of that mud pussle and into the house before I come out there and bring you in myself. 1....2...." After awhile, you won't even be able to get to 3 before he comes running in.
9. Plan for the worst before it happens. There are going to be times when your child is going to melt down, blow up or have a problem. Anticipate it, warn the child and let him or her vent her feelings, etc. Accept them as valid and her feelings. Try and work through it together.
10. Keep your children in the loop. A household is not a dictatorship and kids are likely to follow rules if they help make them. Choose the rules and agree with what the consequences will be. A justice oriented autistic will probably respond really well to this one. If that child buys in because he's helping with the negotiations, you likely will never need to exact tjhe consequences since he'll either not break the rule or punish himself! (I was that way)
One of my favourite comics is called "Ozy and Millie". It's one of those anthropomorphic ones (animals who act like humans) and I usually don't like that style of comic. However, I love this one!
In one strip, Millie (who is a nonconformist, challenging but well meaning girl), gets a copy of the 'Household Constitution' from her mother, who is a lawyer. http://www.ozyandmillie.org/d/20060622.html
The constitution says "My authority is absolute. I am the Queen. I rule your fuzzy little butt".
11. Own up to your mistakes. If you want your child to own up to his mistakes, you need to own up to yours too. No double standards...especially not with an autistic child! Apologize if you screw up and make amends. Gracefully accept your child's apologies as well. Simple human courtesy, really.
12. Let your child have responsibility. Instead of calling them chores, call them the child's responsibility. If a child feels like he is contributing the household and he has respobsibilities, he's more likely to keep with it. My parents made the mistake of saying "This is our house and you're freeloading. You have to do this to pay your way." If they had said "we're all a team here and we all have to do our part since this house belongs to all of us.". they might have had an easier time getting me to do my part.
Anyway, just my ramblings for today.