Tuesday, June 02, 2009

Autism Taboo: Shhhh! Don't Mention THEM!

It is now politically incorrect to refer to anyone as mentally retarded. The polite and proper term to use now is intellectually disabled. Either way there is very little mention of the fact that many persons with Autism Spectrum Disorder diagnoses are severely intellectually challenged. In the world's autism communities there are many who perceive it as an insult to mention the existence of the intellectually disabled autistic population.

It is obvious that some persons with High Functioning Autism and Aspergers are very intelligent, even brilliant. Some very intelligent persons with ASD diagnoses are capable of running organizations and conducting very influential media campaigns. They show no obvious behavior, social or communication deficits; to the point that parents of more challenged autistic children are left wondering how these media superstars ever received an Autism Spectrum Disorder diagnosis in the first place. At the same time some well known autism researchers work hard at showing the world how intelligent autistic persons really are, even those who cannot demonstrate that intelligence with any obvious ability to communicate or function in the real world.

The mere mention of the existence of low functioning autistic persons with serious intellectual challenges is forbidden. Neurodiversity ideologues and ASAN "self" advocates routinely insist upon a positive only, a "posautive", view of autism. A posautive view does not include mention of the intellectually disabled autistic persons, those who do not run an organization with a Washington DC address, work as researchers in Montreal autism research facilities, attend university or colleges for gifted youths, or conduct numerous high profile media campaigns.

The exclusion by autism self advocates of the intellectually disabled autistic population occurs despite the fact that many persons with Autistic Disorder are intellectually disabled. The ICD-10 mentions this fact expressly in its description of Autistic Disorder:

Autistic Disorder


In addition to these specific diagnostic features, it is frequent for children with autism to show a range of other nonspecific problems such as fear/phobias, sleeping and eating disturbances, temper tantrums, and aggression. Self-injury (e.g. by wrist-biting) is fairly common, especially when there is associated severe mental retardation. Most individuals with autism lack spontaneity, initiative, and creativity in the organization of their leisure time and have difficulty applying conceptualizations in decision-making in work (even when the tasks themselves are well within their capacity). The specific manifestation of deficits characteristic of autism change as the children grow older, but the deficits continue into and through adult life with a broadly similar pattern of problems in socialization, communication, and interest patterns. Developmental abnormalities must have been present in the first 3 years for the diagnosis to be made, but the syndrome can be diagnosed in all age groups.

All levels of IQ can occur in association with autism, but there is significant mental retardation in some three-quarters of cases.

* autistic disorder
* infantile autism
* infantile psychosis
* Kanner's syndrome

Settlement.org a web site of the 2009 Ontario Council of Agencies Serving Immigrants speaks about intellectual disabilities with express reference to autism:

What is an intellectual disability?

Intellectual disability is a term used when a person has certain limitations in mental functioning and in skills such as communicating, taking care of him or herself, and social skills. These cause a person to learn and develop more slowly than a typical person. Individuals with an intellectual disability may take longer to learn to speak, walk, and take care of their personal needs such as dressing or eating. A person with an intellectual disability will require some level of support for his or her entire life. Intellectual disabilities are sometimes called "developmental disabilities."

There are more than 200 known causes of intellectual disability. Some common examples of intellectual disability are:

  • Down syndrome
  • Autism
The attempt by higher functioning persons with ASD's and Aspergers to disassociate "autism" from intellectual disability helps stigmatize persons with intellectual disabilities including the many persons with autistic disorder and intellectual disabilities. While intellectual disability in itself may not be a diagnostic criteria for autism spectrum disorders, and is expressly excluded from Aspergers, the fact is that ID is oftent associated with Autistic Disorder. That surely is more than coincidence.

Refusal by anyone, including the alleged Autism self advocacy organizations, to recognize the ID Autistic population is just another form of bigotry, discrimination and intolerance. Such exclusion contributes to the stigmatization of those with MR/ID generally and autistic persons with MR/ID specifically.

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Stephanie said...

Some ND people have gone as far to say that those with LFA actually do not have autism but instead are ONLY mentally retarded because nothing bad can occur with autism, apparently.

And some ND's, to counter the fact that most with LFA are retarded, some "famous" autistics like to promote FC as "proof" that they aren't.

It really disgusts me that some people are so disturbed that they will take advantage of families who have an uncommunicative child and plant seeds of false hope, for a nice cost, of course.

My cousin is profoundly autistic. He is around 20 and cannot communicate at all, not verbally or in the written word, and has never said a word. Luckily, his family is smart enough to know that if anyone tries use FC on him they will know it is a scam.

If a facilitator told my aunt that P was writing poems and understood Shakespeare she would just laugh. She loves P as he is; she knows reality and doesn't try to force him to be someone he isn't.

Marius Filip said...

The old version of the Wikipedia entry for autism stated clearly, right at the beginning, that one of the frequent effects of autism is mental retardation.

Meanwhile, this piece of information has been pushed down the page and disseminated over several paragraphs. I haven't checked the change log, but it's not hard to guess the rationale was to fundamentally dissociate autism from mental retardation.

The current Wikipedia article still shows a frequency of 25-70% incidence of mental retardation in people with autism.

Yet, the reader is drawn to see not the high percentage (25% is still very high) but the width of the range, therefore there must be something wrong with the ability of standard tests to measure "autistic intelligence".

To me, "autistic intelligence" is an attempt to transform autistics into a sort of people who are fundamentally different from the rest, hence escaping the standard norms of evaluation.

Hence, little by little, autism stops being an illness and starts to be a "condition".

farmwifetwo said...

Stephanie, I read your post on FC but I can't post on your blog. We use FC as another "tool". It was a way of teaching him to print, to use the computer. Now he's 100% independant in both - the printing is VERY messy and he has a weight on his pencil to help - but it's HIS printing. If someone told me that all of a sudden he was quoting Shakespeare and writing essays... it would be a lie.

I've mentioned before about the "Scotsman isn't a scotsman, therefore and autistic isn't an autistic if they are violent" post on the Hub earlier this month. I find that attitude frightening. I also find the "well the severe end of the scale doesn't exist" end of the scale discussions even more frightening and no I don't think people that can live 100% independantly should be given an ASD dx. A dx is for SERVICES... not a private club open to anyone who wishes to join.

I don't trust intellectual scales. We were told with both boys by their initial dev peds that they would "amount to nothing" (my words), that they were unteachable, and would never be independant. One they were 100% wrong about - the elder, the other is learning as fast as he can. No he'll never be "independant" but he loves mechanics and reading... he's not "stupid" nor "Mentally retarded".

Mentally retarded IMO comes from the intelligence scales. These do not address the learning styles of all people and are inflexible. I do believe there are better ways to understand how someone learns. I also don't believe there are limits on what we learn, the brain's placisity allows us to learn our entire life.

Saying that, some will never learn as much nor as quickly as others due to damage within the brain. How that damage was caused (genes, head injury, stroke, environment) is irrellavent IMO. It just is.

IMO using mentally retarded, developmentally delayed, intellectually delayed etc.... are just words. Proper descriptions of where the learning issues are is what matters the most. These are the reports I've been requesting for my children, not general intelligence reports that tell a person NOTHING about how you learn.

Unknown said...

Great post!

Intelligence is spread in the autistic population in the same way as in the overall population.

I know, you know, but the councildoctor told us my autistic son could go to school without a problem. Guess she has heard about some high functioning kids doing reasonably well.

He dropped out of school because he couldn't cope with all the noises, lights and social interactions. He couldn't understand the essentail meaning of books and texts, he couldn't communicate with peers who were busy with girls and loves. He stayed 12, they went on 16, 17...

I've spoken hundreds of parents and it worries me that so many have problems accepting their children as they are and will be.
For some intelligence is the magic word, a kind of hidden cure inside their child.
But autistic kids with a normal IQ which they can use function better than those with high IQ's they can't use.

Stephanie said...

Something I've noticed about some parents who support ND is that when their child gets diagnosed they also "discover" that they, too, have been "autistic" all along. Sometimes an entire family will be affected, all diagnosed with some kind of ASD.

Marius, you work in computers or networking of some sort, correct? That must mean you have an ASD. Didn't you want to get diagnosed when your child was diagnosed?

Harold is a lawyer and for some reason "lawyer" is a popular "Aspie" profession as well. Are you autistic too, Harold?

I don't see many parents of those who do not support ND being diagnosed with an ASD along with their children.

Stephanie said...

I don't have a problem with FC use as a "tool," especially in young children who later go on to do independent work. You used it as a way to teach him to print and use the computer, not to facilitate communication. I wouldn't call what you do "facilitated communication."

I am only concerned about the cases where the FC person NEVER does ANY kind of independent work, which seem to be the majority of FC cases.

Stephanie said...

I was also told I was worthless. I was told I would never graduate from high school and spend the rest of my life in an institution; obviously, they were wrong!

Anonymous said...

"Something I've noticed about some parents who support ND is that when their child gets diagnosed they also "discover" that they, too, have been "autistic" all along. Sometimes an entire family will be affected, all diagnosed with some kind of ASD."

I know what you mean, Steph. I see this, too. I think these people miss the boat entirely, though.

My dh is in what could probably be considered an "aspie" profession and has what could be considered "aspie" interests. He fixes electronics and has been writing computer programs since he was ten. He is definitely NOTHING like our daughter, though. He has social skills, can manage his own affairs, toilet-trained on time, and speaks just fine. He is not disabled. Our daughter just recently toilet-trained at six, has no speech, yet you cannot leave her alone or she would end up hurting herself. She is happy around her family and is actually very loving and sociable, but does not intuitively know how to play, either pretend play by herself or games with others.

She is very much disabled. My husband is definitely NOT.

Anne said...

Harold, there's an organization called People First of Canada, which is an organization of intellectually disabled self-advocates. You can read about them on Michelle Dawson's blog here. They have been instrumental in trying to achieve community inclusion for people with MR.

Intellectually disabled people shouldn't be ignored, whether they are autistic or not. The majority of the people in institutions for the developmentally disabled here in California are not categorized as autistic, but as mentally retarded. All of these people face the same challenges of balancing the desire for freedom and self-determination with the need for safety and support. Why just concentrate on the minority who are autistic?

Unknown said...


I am familiar with community inclusion organizations of various names including the various Associations for Community Living.

This blog site is about autism. My comment dealt with the fact that there is very little mention by ANYONE of the fact that many persons with Autistic Disorder are also Intellectually Disabled. Even in your comment you seem not to want to discuss intellectually disabled autistic persons. Your remark appears to suggest that they should be discussed as being intellectually disabled as opposed to having an autism spectrum disorder diagnosis.

The Neurodiversity community seems much more comfortable speculating that every historical genius had an ASD then discussing the many persons with an Autistic Disorder who are intellectually disabled.

Regina Claypool-Frey said...

I would be unfair to my daughter to not recognize that she has an intellectual disability as a dual diagnosis with autistic disorder, along with a very splintered profile, even after much improvement in some areas, but I prefer to stick to specific identification of strengths and deficit areas, and as much as possible steer away from the global LFA/HFA thing in either direction.

I've seen children glossed over for services or frustrated by lack of graduated assistance, insufficient supports or inappropriate placement because of being considered as "HF", and other children, even very young children, where expectations were not much because of an a priori determination of LF. Esp. in early intervention, that kind of expectation could be a significant liability.

If my daughter was assessed on her speech and language, she would probably present as LF. If on her adaptive skills, HF. If push came to shove and I *had* to apply a label, MF might make sense, but would still not be precise, nor possibly accurate.

If instruction is approached in an individualized way based on specific assessment--why would one really want to pigeonhole or present possibly faulty assumption with a global label that, without specific definition and explanation, might be interpreted differently by different audiences (like the elephant with the 7 blind men)? Anyway, I accept that others might see it differently; 'just how I do. I recognize that I might be misunderstanding or missing your point, which I believe has to do with concern of insufficient recognition of that needed by those with more involved or extensive needs.