Thursday, March 25, 2010

On World Autism Awareness Day 2010 Please Remember the Original Autistics

April 2 is World Autism Awareness Day.  On WAAD 2010  I ask that you remember the original autistics.

The original autistics are those low functioning persons  who would have been diagnosed with autism BEFORE the DSM IV expansion of autism to include Aspergers disorders. Between 75-80% of the original autistics are intellectually disabled.

The  alleged autism self advocate organizations seldom include the low functioning original autistics in their portrayals of autism, they do not talk about them in polite company, when they pose for their many media interviews, or when they socialize with Washington DC politicians and bureaucrats. They object to people who describe the realities of severe autism disorders. 

The DSM5 revisions will continue the DSM IV expansion of the "autism spectrum" .... on the high functioning end of the spectrum.  At the low functioning end of the autism spectrum those with intellectual disabilites will be rendered completely invisibile, swept under the autism spectrum carpet into a separate category completely. There will be no mention of intellectual disability in connection with the autism spectrum.

On World Autism Awareness Day  remember the original autistics,  those severely affected enough by their autism  that the condition came to be known as a disorder.  Increasingly, and with the kind assistance of the DSM revisions, autism as a disorder is disappearing and being described as just a different way of thinking. Low functioning autistic persons will be swept completely into an intellectual disability category and removed from the autism spectrum.

 The decision to remove the low functioning original autistics from the autism spectrum has already been made and the public comment section of the DSM5 web site will not change that one iota.In the DSM5 era they will no longer be considered autistic.

Whether for historical reference purposes, or out of solidarity with those who are  severely affected by autism disorder, please remember the original autistics this World Autism Awareness Day.

This request is made by the father of a 14 year old low functioning autistic son. He is one of the original autistics.

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J. said...

I'm afraid i don't understand why you say original Autistics? I mean, why does it matter if someone with Autism has an intellectual disability or not? I don't really care to hear about how one is intellectually disabled and Autistic because that doesn't mean to me that the Autism is more severe. I've met happier children who are considered 'severe' compared to those who are "higher up on the spectrum."

I am one of the 15% of "original" Autistics that is not considered "intellectually disabled", I am diagnosed with Autistic Disorder and am a moderate-high functioning person on the spectrum (I do not have a job, and do struggle quite a lot.) I am not a fan of world autism awareness day, only because people focus on the bad (which there is some bad, but there is some good) and then I have to hear about the paranoia of Autism which only makes me feel worse on myself.

People need to realize that children with Autism will turn into adults with Autism and it'll basically really suck then.

Ian MacGregor said...

Mini, whether a child is low-functioning or not has a huge impact on the services they require. My daughter is also low-functioning. She cannot communicate, prepare even simple meals, understand the dangers of traffic, and needs constant supervision. She is twelve and I expect she'll make steady improvements, but also think she will be entirely dependent on the kindness of society to meet even her most basic needs such as hygiene or having food to eat.

I think it's a shame when those who are higher-functioning do not have the capacity nor the heart to understand the problems of low-functioning children.

Just who doesn't understand that children with autism will become adults with autism? There is no good in low-functioning autism. There is plenty of good in the people with the disorder, but none in the disorder itself.

My daughter is happy and that means the world to me. But that happiness does not come from her autism, but from the progress albeit small she has made against it.

Unknown said...


It matters because an autistic person with intellectual disabilities face severe challenges in life, challenges that are not faced by much higher functioning autistic persons.

You can communicate on the internet. Many autistic persons with intellectual disabilities, including my son, have very limited communication skills.

J. said...

I really never understood this "well you can use the computer and type well so you must not have a limited communication problems," while yes I can use the computer to communicate if we were having this conversation in person it would not be happening. Chances are, you'd be having a conversation with a "wall" as some people say when they talk about me. And when I do respond depending on who you are, I tend to do parot talking (basically I'll either mimic phrases from past conversations/mimic whatever you just said/or use random quotes) but I do better online because there isn't the distress of having another person in front of me.


It saddens me that you think I do not have any compassion for those who are lower on the spectrum. I do, and I know that the struggles they face, there is a child with severe Autism that lives down the street from me and he has a lot of difficulties.

For the record, I respect a lot of parents who have children with severe disabilities (doesn't matter what type) and know it must be hard. But no one seems to respect the fact that while i may not be severely autistic, that I struggle in many different aspects and it's very frustrating because i'm not taken seriously. I'm too Autistic to be employed, to do some things that those with the Asperger's Disorder diagnosis can do (and apparently have way more issues to be diagnosed with Asperger's according to the person who diagnosed me) but I am not Autsitic enough to get services.

If my Mom died, I would be completely homeless. I can't live dependently at this moment in time and I am not even certain I can even in the future. There's nothing more than I would love to feel dependent.

(And fyi, I'm not 'extremely' high functioning.) I admit yes, I am lucky because I am verbal and because I can do certain things some with Autism cannot do. However, I still struggle insanely so.

I don't think I'm expressing myself correctly.

Unknown said...


I did not say as you put in quotation marks:

"well you can use the computer and type well so you must not have a limited communication problems,"

What I said and I will say it again is that what you communicate on the internet demonstrates more communication and understanding than someone ... like my son .. who lacks that degree of ability to communicate on the internet, with a typewriter or by any means.

Ian MacGregor said...

Mini, from the description of your life struggle it does not seem that autism has been "good" for you, yet you write in your first posting as if it's equally good and bad. Saying a disorder which would have you homeless if not for your sainted mother is bad isin no way an insult to you. You are battling a significant disorder, one we should be working day and night on curing, mitigating, or masking.

I reacted to your statement of "I don't really care to hear about how one intellectually disabled and autistic..." Seemed to me you did not want the condition even discussed.

Anonymous said...

My son is intellectually impaired, along with autism and epilespy, except he can communicate his needs and wants to a point but still does so. Low functioning autism doesn't have to include limited to no verbal skills. I also found a lady online I think her name was droopy or dropy, drappy, drapy? i don't exactly remember, considered low functioning autism, but communicates extremely fine through her typing skills and appears very intellegent with her writings online. Both are autistic.

I have a friend with a child who is considered "high up on the spectrum" even has a part time job, cooks, cleans, takes care of their pets, but cannot utter a simple small 3 word sentence, or let you know what he/she is thinking. All is true autism. My child can utter a simple sentence, I am thankful for that, even when I am changing his diaper, but to say a person isn't a "real" autistic or not by how they function in society or how they communicate is an understatement.

My niece started out non-verbal, unresponsive, violent behaviors as a child to a verbal, interactive, sweet teenager, are you saying since she is not longer seriously affected by autism, she isn't an original autistic?

I do apologize for disagreeing with you or being so straight forward, but my friend hears this all the time about how her child can work, can cook and dress them self, how lucky she is, he/she isn't "really" autistic even though this child still can't communicate anywhere near the way my son can, please give us a break!

Autism is autism, from its milder versions to its more severe versions. There is no my child is more worse off then yours so is qualified to be called autistic, no if that was the case so many chidren would probably be left undiagnosed or left without the help they need!

I don't think it is right though for people with aspergers or higher on the spectrum should speak for those who can't even wipe themselves or understand a simple math equation, that is where I draw the line!

- Kathy (Mom to Jake)

Unknown said...

Kathy (mom to Jake)

I appreciate your directness and will be direct in return.

First I am not sure what you are disagreeing with. I never said anyone was or wasn't a real autistic. I said the definition of autism has changed and that the changes result in more people who are high functioning being diagnosed as autistic. The DSM 5 will continue that process with more higher functioning persons diagnosed with autism.

My point is that the lowest functioning ... and there are differences in functioning levels ... in ability to understand with and interact with the world, people and their challenges .... are increasingly being forgotten.

The media attention is almost always on the high functioning autistic population with no mention of the lowest functioning persons those who actually were the original autistics before the expansion of the definition of autism.

SOME of the higher functioning autistic population protest efforts by parents and parent driven organizations to help their own children through cure and treatment.

The needs, even the existence, of lower functioning, intellectually disabled autistic persons are forgotten.

I have been actively involved in autism advocacy for 12 years. I have visited psychiatric hospitals where some lower functioning intellectually disabled autistic adults live out their lives here in New Brunswick.

The differences are real. I will not ignore them.

Anonymous said...

Autism reality,
Then if that was your point, I do apologize for my actions, and will agree with that you, the media does only show the "high on the end spectrum" part of life.

I guess where we do see differences in the matter, is that you focus so much on the functioning levels. One "on the high end of the spectrum" could be disabled just as much as one "on the low end of the spectrum" just in different ways. When John Robinson got his position on the autism speaks advisory board, I did have mix feelings, but then I realized how the individuals that do have a smaller amount of autism can advocate and tell us even if its a small piece of what autism could be, I'd take it! If He, John takes that position and speaks for everybody, that is where it becomes nerve racking and makes it differcult to imagine the world focusing more on "the high end of the spectrum".

Adding all individuals into one spectrum may however be beneficial for all parties, If you think my son has a photographic memory because you watched temple grandin movie, thats great! It is sure better then, people refering to my son as a forgive my use of words, retarded/waste of society. My only concern is that the world may start viewing autism as a gift rather then a disability, and some "on the high end of the spectrum" already believe that, which is absolutely pompus!

So I will agree with you to a point and pray with the new DSM, we don't see the negative new changes you are letting people know of!

Thank you for letting me enjoy a healthy debate/discussion on your blog.

- Kathy (Mom to Jake)