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The Wonderful Thing About Thomas Is...
....I'm NOT the only one!
Well, not the only one to recently have concerns about the way autism advocacy has been heading lately.
Another blogger recently wrote about this same issue here, and I commented on the blog.
Instead of rehashing everything I wrote there, I will just direct you to the comment (click on "show original post" to see original blog entry) and you can read it all for yourself.
Way to go, Liane. :)
1 comment
Comment from: Daria [Visitor]
I tried emailing you this, but your inbox is full, so I'll send it here!
I just wanted to write since I have seen all the hullabaloo about your posting about credentials in speakers.
When I first read the article, I was a little offended...but then I read it again and I must say that I agree with you.
Perhaps it is because I am a 30 year old "high functioning" autistic woman, officially diagnosed at the age of two by accredited professionals in the medical field. Perhaps it is because I have done quite a number of speeches at conferences and alone for parent and teacher groups. Perhaps it is because I have seen first hand the frustration that parents go through when they deal with professionals, speakers and such in their desperate search for information.
The road to Hell is paved with good intentions, or so they say...and I have yet to see a road more heavily paved then the one paved in the name of treating autism! If I had a nickel for every harebrained theory, every potentially dangerous medical procedure, every outrageously expensive behavioural therapy program and every parent whose hopes are dashed by the negative press surrounding autism...I'd be able to hobknob with Bill Gates.
I've attended parent support groups and have done a few speeches. I'm scheduled to do more and I always wonder if I am causing more harm than good. Am I a false hope? Am I promoting yet another harebrained opinion that someone may take as fact? Am I doing anyone any good?
I've been called everything from an "Angel", a "Shining Example" to a "Fraud" because I can speak better than most of them can thanks to Toastmasters and because I am self sufficient and have a career. I drive, am married and own a house, so how can I be autistic? I once suggested to my mother that perhaps I'm not really autistic after all...and she waved the papers at me, blew a huge fit and proceeded to carry on about "what they had to go through"... Regardless, I no longer doubt the veracity of my diagnosis, I am just thankful that I came as far as I have.
In 2004, I thought I'd better get the paperwork. I wrote a letter of release to the Alberta Children's Hospital and got a 3 inch wad of paperwork with every visit, doctor's note, specialist report, etc. from the time I was 2 years old until I was about 16. While there was a bit of dickering around at first as to whether it was autism (everything fit the criteria except my exceptionally high IQ), but it was officially diagnosed in 1978.
When I was asked to do my first conference speech, I wrote to a number of well known autistic authors (websites, books, articles, etc.) and did some surveys online with other autistic adults to see if they would agree to be part of my survey for my speech. Those who agreed did answer my questions and all of the authors gave me permission. They were all credited and thanked in my handouts.
I did my speech based on my own story and stated at the very start that I could only really speak for myself but that I would provide information and articles written by other autistics so folks could get a wiser range of opinions. My speech was on the messages adults can give to children by their actions. The rest was just a peek into my world and that there are as many types of autism as there are autistic people and that one cannot easily categorize its severity or experience.
To this day, I will still do speeches based strictly on my story and my own opinions (with the provision of links and resources that people can check up on to get a bigger picture). This time, however, I will be bringing my paperwork with me. I'm sure if anyone really wants to dispute my claim to autism, they can wade through the 3 inch wad of papers...or they can suggest to my mother that I'm not autistic. I'm sure she'll appreciate that.
My message is simple: I want to see less moaning and groaning and more acceptance. I want to see kids being raised without the gloom and doom and perhaps with some more dignity and self empowerment. I would like to see even one person understand what it might be like. It may never happen, but I'll still go on telling my story. If people don't believe it, I can provide proof.
Thank you for attempting to draw the line. There do need to be some standards. I find it hard to recognize a self diagnosis, but I also recognize how hard it is for many adults to get such a diagnosis.
It's a thin line, but I do agree that it needs to be drawn.
Daria Skibington-Roffel
I just wanted to write since I have seen all the hullabaloo about your posting about credentials in speakers.
When I first read the article, I was a little offended...but then I read it again and I must say that I agree with you.
Perhaps it is because I am a 30 year old "high functioning" autistic woman, officially diagnosed at the age of two by accredited professionals in the medical field. Perhaps it is because I have done quite a number of speeches at conferences and alone for parent and teacher groups. Perhaps it is because I have seen first hand the frustration that parents go through when they deal with professionals, speakers and such in their desperate search for information.
The road to Hell is paved with good intentions, or so they say...and I have yet to see a road more heavily paved then the one paved in the name of treating autism! If I had a nickel for every harebrained theory, every potentially dangerous medical procedure, every outrageously expensive behavioural therapy program and every parent whose hopes are dashed by the negative press surrounding autism...I'd be able to hobknob with Bill Gates.
I've attended parent support groups and have done a few speeches. I'm scheduled to do more and I always wonder if I am causing more harm than good. Am I a false hope? Am I promoting yet another harebrained opinion that someone may take as fact? Am I doing anyone any good?
I've been called everything from an "Angel", a "Shining Example" to a "Fraud" because I can speak better than most of them can thanks to Toastmasters and because I am self sufficient and have a career. I drive, am married and own a house, so how can I be autistic? I once suggested to my mother that perhaps I'm not really autistic after all...and she waved the papers at me, blew a huge fit and proceeded to carry on about "what they had to go through"... Regardless, I no longer doubt the veracity of my diagnosis, I am just thankful that I came as far as I have.
In 2004, I thought I'd better get the paperwork. I wrote a letter of release to the Alberta Children's Hospital and got a 3 inch wad of paperwork with every visit, doctor's note, specialist report, etc. from the time I was 2 years old until I was about 16. While there was a bit of dickering around at first as to whether it was autism (everything fit the criteria except my exceptionally high IQ), but it was officially diagnosed in 1978.
When I was asked to do my first conference speech, I wrote to a number of well known autistic authors (websites, books, articles, etc.) and did some surveys online with other autistic adults to see if they would agree to be part of my survey for my speech. Those who agreed did answer my questions and all of the authors gave me permission. They were all credited and thanked in my handouts.
I did my speech based on my own story and stated at the very start that I could only really speak for myself but that I would provide information and articles written by other autistics so folks could get a wiser range of opinions. My speech was on the messages adults can give to children by their actions. The rest was just a peek into my world and that there are as many types of autism as there are autistic people and that one cannot easily categorize its severity or experience.
To this day, I will still do speeches based strictly on my story and my own opinions (with the provision of links and resources that people can check up on to get a bigger picture). This time, however, I will be bringing my paperwork with me. I'm sure if anyone really wants to dispute my claim to autism, they can wade through the 3 inch wad of papers...or they can suggest to my mother that I'm not autistic. I'm sure she'll appreciate that.
My message is simple: I want to see less moaning and groaning and more acceptance. I want to see kids being raised without the gloom and doom and perhaps with some more dignity and self empowerment. I would like to see even one person understand what it might be like. It may never happen, but I'll still go on telling my story. If people don't believe it, I can provide proof.
Thank you for attempting to draw the line. There do need to be some standards. I find it hard to recognize a self diagnosis, but I also recognize how hard it is for many adults to get such a diagnosis.
It's a thin line, but I do agree that it needs to be drawn.
Daria Skibington-Roffel
08/22/06 @ 16:55
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