Condition, not Disorder

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I accidentally ran into this article: "Let’s stop treating autism as abnormal", by Dr. Sarah C. Bauer, a developmental pediatrician and Assistant Professor of Pediatrics at Northwestern University:

http://qz.com/562043/lets-stop-treating-autism-as-abnormal/

And then I dug into Dr. Simon Baron-Cohen's work and found this video on YouTube:



It has all been kind of amusing to me, for these two doctors almost use the same terms that I use. They call autism as a condition, not a disorder. Simon Baron-Cohen actually proposes to change ASD to ASC: Autistic Spectrum Condition. Furthermore, they say autism is not a disorder, but a "difference." Kind of amusing and scary, how I totally independently use almost the exact same term (I usually say: autism is not a "disease/disorder/disability/defect, but simply being different," ha ha, 5 words starting with the letter d.)

So I feel the tide is turning. Even medical professionals are becoming honest, and starting to view autism not as something for them to treat. That's the way it should be. It's a developmental issue, which falls under the umbrella of education, not healthcare. The way how autism is handled in the U.S.A. is totally wrong, and it will take quite some time to shift it from healthcare back into education. We are not talking about resources here. Resources are needed, but whether they come from the left hand or the right hand, it's up for debate. Besides, with the robotic era upon us, it's not just the autistic children who will need personalized education.

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That leaves the question of low-functioning autism. To me, there is no such a thing as low-functioning autism. Autism is autism, once you understand how the brain works, from first principles. I never mix up autism with underdevelopment. What people call low-functioning autism is invariably autism plus something else. Dr. Baron-Cohen says it very clearly, the absolute majority of autism cases are high functioning and shouldn't be considered as a disorder. I believe we shouldn't let the so-call low-functioning autism cases distract what needs to be done for the majority of cases: the low-functioning cases are simply not representative. I wouldn't be surprised that in another 15 years or so the so-called low-functioning autism cases are expunged from the definition of autism. We need another term to more precisely describe those cases. I personally would call them "autism plus," since they are autism plus "something else." But a more neutral term would be "meta-autism." The Greek prefix "meta" has two interpretations: it could either mean a "more intense" form of autism, or it could mean "something beyond autism." Politics is the art of finding compromises where both sides can declare victory. So "meta-autism" sounds good to me. Now, for the curious, you may wonder what that "something else" is. Well, let's just say Dr. Baron-Cohen, being a professor at Cambridge University, is not an idiot. And neither am I. He made his entire speech fully aware of the low-functioning cases. And he did not bother mentioning low-functioning autism, at all. And neither will I address the details of this point any further. Sometimes things are best left unexplained, so to leave all possibilities open and so that people can fill in their own explanations.

My prediction is that with a name change, that is, the low-functioning autism cases being called meta-autism cases, they will gradually dwindle in number, all by themselves. They won't entirely disappear, but they will become rarer and rarer, all by themselves. Which, is a good thing.

Happy New Year!

The "low-functioning" subjects of Kanner's study actually gave us the present meaning of "autism," it should be remembered.

This is a common myth. Kanner's subjects were not 'low functioning' - they ranged from high to medium-low functioning. Several of his cases grew up to be employed and living independently.

It used to be that kids would be considered not to qualify for autism if they were too low functioning - autistic kids were thought to be normal or gifted IQ kids who retreated into themselves due to trauma, so if the child showed no hint of intelligence beyond expected for their functioning level (or if they showed signs of 'organic' issues, such as epilepsy or physical anomalies), they were considered 'ret*d' instead of autistic, no matter how autistic they behaved.

I stand corrected.

But I do believe that the myth you mentioned made autism into a condition with a dire prognosis pretty quickly. I've read many case studies from the 1950s (and even a few from the 1940s). I never saw a "high-functioning" person in any of them. And I've been reading case studies since about age 12.

Yep...you are, obviously, correct about Kanner's actual subjects.

I don't really care about labels, one way or the other.

Call it Mortimer Lipschitz syndrome for all I care.

People get too concerned with the connotations of words. That is a subjective, emotional reaction.

I'm fine with whatever the name is, as long as they pick one and stick with it. I'm sick of these shrinks re-labeling everything every few years just to protect people's feelings.

Boo-hoo

The only thing I could find about the future of the Kanner subjects was here
http://neurodiversity.com/library_kanner_1971.html
None of them were living independently from this and a large number seem to have ended up institutionalized. It was interesting to note their backgrounds as most came from highly educated families with a number having professional/working mothers which would have been unusual for the time. Though again this could be an inbuilt bias to the study as poorer families might not have brought their similarly affected children to Kanner's attention.

What you have written above makes no sense to me. How will a change in name affect anything?

I don't think a name change matters in the least, either.

i am not a big fan of the new DSM. I don't hate but I question the application of severity ratings. I think if I were going to redo it, I would not have a global severity rating, but I might have specific categories to where it is more specific. I am not sure how many categories I would have, but I don't think a global severity level is any help when it comes to figuring out what a particular person needs, especially if they have splinter skills.

My son was diagnosed under the old system and honestly, I don't even know what he would be labelled with the new system b/c he is all over the place. Even if he had a severity rating, it would be worse than nothing, I think, as it is currently applied. Regarding all the things he can not yet do, they would constantly be telling me to blame him and he should be able to do x thing he cannot do, because of his rating. The things he could do above his rating, they would be trying to dumb down. I got enough of that nonsense as it was.

The main problem is that dealing with the individual child based on a label or rating does not account for all the variation. In addition, if you start assigning anyone with a co-morbid as "Meta" i think that is just as misleading. There are so many co-morbids like ADHD and a ton of others. If "Meta" becomes a dumping ground for anyone who has "something else" in addition to pure autism, I think those numbers will be very large.

Names surely matter. People are humans. Two examples come to mind:

(a) "Most Favored Nation" status: https://en.wikipedia.org/wiki/Permanent_normal_trade_relations a name that was subsequently changed to "Permanent Normal Trade" relation. Before the name change, China is taken to the US congress every single year, with many legislators arguing that it does not deserve to be "most favored," and therefore its status waiver must be approved year by year. All for the purpose for legislators to be able to shout to each other, and gain publicity time. In reality, the absolute majority of countries are "most favored nations": it's the rule, not the exception. With the name change, the circus show stopped.

(b) The "Swine Flu": https://en.wikipedia.org/wiki/Swine_influenza, many scientists, meat industry executives and policy makers begged and begged to the WHO (World Health Organization), for a name change, to no avail. Because of a bad name, it was exploited by a Muslim country (Egypt) as an excuse for exterminating ALL the domestic pigs in the country https://en.wikipedia.org/wiki/2009_flu_pandemic_actions_concerning_pigs. An action with zero scientific basis. You could hear the gasp across the the world. The leaders of WHO kept insisting, like you are doing, that name did not matter, and that "Swine Flu" was an accurate description and that there is no need to change the name. After being repeatedly embarrassed by ACTUAL events with massive economical consequences, guess what? The WHO quietly admitted error in judgment, and decided that, indeed, yes, a name change was necessary. And now the disease is known as H1N1 (and later, other variants.) Again, a name change in theory wouldn't do anything. In practice, the pork meat scare completely stopped.

Take a look at my latest video, and think how hard I work with my children, and how much fun my children have, and how much progress they have made in their development. When the two levels of autism are clearly separated, when you see that most parents would prefer their children to be accepted in the society without stigma, and thrive, and contribute, that surely makes a big impact on the decisions of parents/caregivers/medical professionals, as in what direction they want to drive their children to. The problem today is, people give up the fight, all too easily, making many of the low-functioning cases a self-fulfilling prophecy. For those boundary cases, people will think twice, as which direction to go: education, or healthcare?



Seriously, the technological singularity and robots are already a reality today. Autism is probably the least of my worries.

OK, I misremembered that paper. I was confusing it in my mind with this one:

http://neurodiversity.com/library_kanner_1972.html

Maybe you are right, maybe the nomenclature would make a difference, but not as you originally laid it out.

Honestly, if anything, your proposed nomenclature has the potential to make it worse. If everyone with autism who has a co-morbid is lumped into your "Meta" category then what would happen to them? Would they all be put into babysitting classes instead of giving them academics? If anything we need to get away from general labels that do not specifically highlight strengths and weaknesses that lead to a more individualized experience.

In some places, any educational label of autism gets you a special classroom that may or not be the appropriate placing. I have seen people post that in their locality you are best keeping any autism diagnosis to yourself if you want a chance at an academic education.


Many times, there is no appropriate place b/c nothing is done in the SPED room of any consequence and full on mainstreaming may not be a good option for a variety of reasons. The more people rely on labels instead of specifics, the more likely these problems will persist.

Edited to add: I know we disagree about certain things on here, but I do want to say that the video was very cute. My son loves both math and Japanese characters/language, so I showed him your kids' video and he really loves it, especially the part with the Japanese speaking and writing.

I work with SN kids. Often Autism is the only diagnosis the family has at the time. The diagnostic minefield of trying to work out which labels to slap on a child baffles even the professionals doing the diagnosing (often very young, inexperienced, straight of university, therapists, who's team leader and mentor is 1 year older than they are). I can't tell you how many children I've seen with no dx, labelled GDD, which disappears as a label when they turn 5, so then they get referred for ASD or ID dx. I agree though, I would like to see a diagnostic world were us HFASDs are not grouped with non verbal IDs. Please I don't mean that to be offensive, I just mean that it helps noone, the treatments required are different, the resourced needed are different, it helps noone to have 2 very different groups classified together.

I have a "mother to mother/father" chat with just about every parent I meet and I try to encourage them not to get hung up on labels or the word "disability". It's just a word, move on and focus on what resources you need to access to help your child's development, the root cause of the behaviour isn't always relevant to the best course of treatment anyway.

I agree with comments about boundary cases though, where does that leave them. I don't know if there's a perfect solution. My son's dyspraxia is very severe, he battled through daily oral motor training for 3.5 years, now I have to convince new speech therapists to read his file as he presents so well they tell me he can't be severe, it's clearly only very mild (until they work with him for a few weeks then apologise for their comments!). I see kids every day who are nowhere near as advanced as my son, and probably never will be, because noone told them it was possible, noone put the work in and the parents can't do it alone. That is what will likely happen to the boundary cases.

Did he learn to read first, or was forced to talk first?

Most of the cases of dyspraxia I have seen are because these children have been forced to talk first, before they learned to read.

We turn the lives of these children upside down, and of course we do more harm than good in the process of "helping" them.

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Anyway, while other parents keep seeking outside help, I just keep making my video clips.



My son used to write exclusively in uppercase letters. Now he has to write a few lowercase sentences with me everyday. My wife complained to me about a week ago that my son couldn't write in lowercase letters. Now he can. My wife complained that my son was always writing in extra-large sized letters, one week later he can now write tiny sized letters. Yeap, my children are just keeping plowing forward, while some of their old friends get stuck and are still non-verbal. The difference? I draw pictures and make video clips for my children, non-stop, year after year, while other parents go outside and seek help from the "experts." It's a matter of choice. I always have fun listening to the laughter of my children, while other parents try to garner sympathy and praises from strangers. Sure, it's hard work on me, I am the only one in the world doing these crazy things for my children. But I don't take it as work, I take it as fun. I guess being autistic myself helps. Listen to their laughter and tell me, is the hard work worth it or not? That final "Woohoo!" from my daughter at the end of the video...that, you can't get from most other autistic children.

I just feel sorry how our society is raising all these powerful aircraft carriers into mere fishing boats. Anyway, technology will only be easier and easier. When the household robots become reality, these kids will be able to learn 10 times faster and better. When we look back at autism some 20 or 30 years down the timeline, I am sure there will be plenty of regrets, from most parents.

Okay, ignoring your odd beliefs about dyspraxia/Developmental Co-ordination Disorder (and I write that, to hint that simply viewing videos is not enough to counter true dyspraxia.) I'm not convinced on your approach that videos work for all autistic children, though I do think it would work with some. I could see the video more closely relating to communicating with your children and perhaps explaining why they should practice in a certain way that altering the underlying co-ordination difficulties. Would you say that difficulties hitting a ball are caused by learning to read before writing?

Anyway, a self-contained unit for autism (using the language of the rest of the services for my area) that I volunteered with used ASC instead of ASD so it's definitely becoming more mainsteam.