Wednesday, June 9, 2010

Remembering Autism's History

In this month's issue of the journal Pediatrics, there is an excellent article entitled "Autism in 1959: Joey the Mechanical Boy" that talks about part of the history of autism.  It talks about how, not that long ago, the predominate causation theory of autism was that it was something that happened to children because of cold and uncaring mothers.  This was known as the refrigerator-mother theory of autism and was thankfully debunked many years ago.

While I  like to think that we have come a long way since then, I was recently reminded that some people still seem to think that autism is something that a parent does, either intentionally or unintentionally,  to their children.  To those people I would have to say, well, you really need to spend some time learning of what you speak.

It was nice to see the an article in a mainstream journal like Pediatrics taking the theory to task and putting it in its proper historical perspective.  But more than that, the author of this article points out that some of the parental distrust of the medical community might be able to be traced back to these earlier theories of autism.  Here are a few excerpts from the article that I found to be particularly worthwhile -
For many in the autism community, the popularity of the refrigerator-mother hypothesis before the 1970s continues to be remembered as an example of what might be called "the tyranny of expertise"—the danger of giving professionals too much power. ...
The most obvious legacy of the refrigerator-mother saga has, thus, been a willingness to question medical authority. This questioning reflects, of course, a broad social trend not limited to autism: patients since the 1970s have increasingly sought greater participation in decision-making in almost every domain of medical practice, both conventional and otherwise. Every physician who works with autistic children has encountered the formidable array of restriction diets, vitamins, and other alternative "biomedical treatments" embraced by many parents for autism despite a lack of evidence from controlled trials. The coalescence of the antivaccine movement around autism has become especially polarizing, pitting parents against one of the most valued tools in the pediatric armamentarium to promote child health.
Yet, focusing on the theme of antagonism obscures the positive contributions made by many parents to research and treatment approaches in autism. It was, in large measure, thanks to parents that the refrigerator-mother paradigm finally collapsed. ...
At a moment in time when the polarization over vaccines has created a deep rift between many parents and professionals, it is worth viewing today's conflict from the vantage point of history. Forgotten for the most part by physicians, the memory of the refrigerator-mother explanation of autism has fundamentally shaped the autism community. It is a story that continues to stand as a warning to the danger of shutting out the voices of parents in the name of a persuasive theory.
I wish this article were open access as I think it is definitely worth reading the whole thing and I have to give Pediatrics credit for publishing it.   If this is a sign of things to come then maybe, just maybe, there is a chance that the autism wars will end in the not too distance future.

20 comments:

  1. Speaking of the history of autism, I find this interesting. It's from the 1951 book "The Management of Celiac's Diseaese"

    http://breakingtheviciouscycle.info/autism/dr_hass_exerpt.htm

    It points out odd behavior that doctors found in some of the more severe gi cases that were considered Celiac at the time. This was before they had biopsies and knew about gluten for it.

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  2. I had not seen that before, that is interesting. I know that Celiac's is a different condition but there seem to be a lot of parallels with autism (such as the fact that the number of people with Celiacs is increasing).

    The other thing that always bugs me is that people look at you strangely when you suggest something like a diet can help autism where there are known conditions like celiacs were that is the exact treatment needed.

    Maybe in the future researchers will start to take parents seriously when we tell then that something like a diet can help.

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  3. Neurodiversity has been keeping the theory that parents cause the symptoms of autism alive and well. You only have to read the writings of Clay Adams and Phil Gluyas who blame all my problems on my mother and not on any neurologic dysfunction.

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  4. Phil/Timelord, there will be no attacking people or their mothers here. Take your insults and accusations elsewhere.

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  5. So I'm not allowed to tell the truth? That's what it was, the truth. If you aren't interested in the truth then just say so. Or as an alternative - take down that lie from Mitchell.

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  6. Phil,

    First, your opinion is not the same thing as the "truth". You are certainly entitled to your opinion, but in this case I would almost guarantee that your opinion is factually incorrect.

    Second, your opinion that what Jonathan wrote was a lie is demonstrably wrong. Your earlier comment was a perfect example of exactly what he is talking about.

    Third, there will be no personal attacks against other commentors, or their parents, on this site. Period.

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  7. No it was not wrong, and I quote;

    "yes, Ivar, my mom is still living, she was a nice mother and her attitude towards autism was like mine, that it is a horrible disability that needs to be cured. She also tried to get help for my perceptual motor problems with tutoring and sent me to some special education schools and looked for medications or other treatments that could alleviate my problems but there were none that did any good"

    There is no way this can be denied as an attempt to cure when Mitchell was a kid, after being accused (wrongly) of being a bad parent and being the reason her son was Autistic. Why didn't she fight that accusation? You tell me, MJ!

    Bottom line, Mitchell is blaming EVERYTHING on his Autism, and that is BS and big time. Some of it is his Autism, but a lot of it is NT society penalising him for not being like them and him not reacting correctly. He should be fighting them, but instead he treats them as right - when they are not.

    I am factually correct in my commentary. It is up to you to prove me wrong and until then I request the right to defend myself against Mitchell's slanderous accusations - or you should remove my name at least from Mitchell's comment.

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  8. "There is no way this can be denied as an attempt to cure when Mitchell was a kid"

    And what exactly is wrong with trying to help your child recover from autism?

    "after being accused (wrongly) of being a bad parent and being the reason her son was Autistic. Why didn't she fight that accusation?"

    Are you really that naive? You must not understand the unbelievable amount of crap that parents still get even today.

    I can only imagine what it must have been like to have a child with autism back in the bad old days when the prevailing belief about autism was that it was a cold, uncaring mother that caused it.

    I am guessing that you don't have children, Phil, because if you did you would understand the full implications of that theory of autism. Your child is having major issues and everybody looks at you and tells you - to your face - that it is all your fault.

    No matter what you would say, it would still be all your fault. If you had been more caring and not so cold, your child would not have to suffer with autism.

    I can partially understand it because I still run across people even today who believe that autism is caused by bad parenting. But the few idiots of today don't really compare to the entire mainstream world condemning you for breaking your child.

    Can you understand what that must have felt like?

    "Some of it is his Autism, but a lot of it is NT society penalising him for not being like them and him not reacting correctly. He should be fighting them, but instead he treats them as right - when they are not."

    Spare me this nonsense, please. Autism can and does causes huge problems in daily functioning that have absolutely nothing to do with other people's attitudes towards them.

    "It is up to you to prove me wrong"

    No, it really isn't.

    "and until then I request the right to defend myself against Mitchell's slanderous accusations"

    As I said above, you are free to comment as long as you refrain from personal attacks or insulting people's parents. But I have to say, you are really making his case for him.

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  9. And what exactly is wrong with trying to help your child recover from autism?

    Ahem - I said this before. There is a difference between "recover" and "cure". Nothing wrong with trying to assist a recovery. PLENTY wrong with trying to cure the condition.

    Are you really that naive? You must not understand the unbelievable amount of crap that parents still get even today.

    That's no excuse not to fight! In fact it should encourage it!

    I can only imagine what it must have been like to have a child with autism back in the bad old days when the prevailing belief about autism was that it was a cold, uncaring mother that caused it.

    We both know that's a crock of crap. Even back then, parents knew it wasn't their fault. Most fought. Much harder to do then than it is now because of the difference in the amount of support. But Mrs Mitchell didn't fight. She let the liars win and proceeded to take the blame that wasn't hers to take - and that's why she tried to cure her son. Not recover - cure.

    I am guessing that you don't have children, Phil, because if you did you would understand the full implications of that theory of autism. Your child is having major issues and everybody looks at you and tells you - to your face - that it is all your fault.

    DON'T YOU DARE GIVE ME THAT!!! Only a coward thinks like that, and even if I was a father of an autistic child I would NEVER take that attitude. NEVER! I will not have that argument thrown at me because it's cheap and has no validity because it seeks to undermine the insight I have into the condition - something that is common amongst those with Asperger's I'm told by the peak body of Victoria, Australia (Autism Victoria).

    I can partially understand it because I still run across people even today who believe that autism is caused by bad parenting. But the few idiots of today don't really compare to the entire mainstream world condemning you for breaking your child.

    I know those people exist, and they should be called to a count for it. They haven't so far and that pisses me off. It should piss you off as well.

    Spare me this nonsense, please. Autism can and does causes huge problems in daily functioning that have absolutely nothing to do with other people's attitudes towards them.

    BULL!! It has EVERYTHING to do with societal attitude! Societal attitude is what cost me two jobs and has me labelled as unemployable (I am fighting that and I may be making progress at long last). There is the ability to adjust. We have a right to access the space to make such an adjustment. Society won't allow us to do so. THAT is the biggest problem AND it is a cause of the functioning issues that you speak of. Autism isn't the root cause, because if the condition was treated with respect 90 percent of the functioning issues would be at best resolved and at worst improved considerably.

    No, it really isn't.

    Yes it is. I stand by my statement, and you are yet to prove me wrong.

    As I said above, you are free to comment as long as you refrain from personal attacks or insulting people's parents. But I have to say, you are really making his case for him.

    I am doing no such thing. If you prohibit personal attacks, you should be deleting Mitchell's comment because that is a personal attack on me for telling the truth about his upbringing. Absolute fact and I have proven it. I am NOT bringing back Bettleheim. Mitchell is. And so are you if you are supporting his line.

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  10. Phil,

    As fun as this is, I don't think it is really worth my time to have yet another conversation about this. You clearly don't understand any perspective but your own nor do you seem to be able to understand the reality of what it means to be a parent of a child with autism.

    Maybe if you one day have the responsibility for a raising a child or, god help you and the child, a child who is actually disabled by their autism then we can have this conversation again.

    Because I don't think you are going to be able to understand it until you live it.

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  11. You don't know what you're talking about, MJ. You think you're living it? You're wrong. You're the one with the blinkers on. I have an understanding and insight that you'll never have, and I'm not the only one. Autism Victoria is 100 percent with me, and that group includes parents in your position. My experience is well beyond personal because unlike you - I care about the Autistic community, I speak to people IRL (including parents - heck I was talking to one just this past Saturday night!) and I know what is needed to help everyone cope better. Not just me - everyone. And a good start is to shut up the likes of Mitchell, Best (that's in hand), Canby and the other haters who are holding back the best possible chance at a decent life for people like your children through their lies, hate and out of date thinking.

    Do you want that for your children? Do you want your children to have the best chance at a decent life? Follow Mitchell's line in particular and your children won't get it.

    Now tell me if I understand or not. I fight for Autistic rights! Do you? Or are you a coward like Mitchell?

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  12. "I fight for Autistic rights!"

    And right there is the part you don't seem to understand. Autism is not a civil rights movement - autism is a developmental disorder that causes profound problems with day to day functioning.

    So while you are off "fighting" for your "autistic rights", I am sitting at home trying to teach my children how to communicate with the world and overcome the many other disabling aspects of their autism. Their problems aren't caused by society, their problems are caused by their disorder.

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  13. You would get respite and all the help you need to get that done quickly and effectively because of those who fight for Autistic Rights. You shouldn't be working on it alone, and those "disabling" factors can be alleviated. Why are you working alone? Because society doesn't want to know - due to Mitchell, Best and Canby amongst others. You can't blame Autism for that! And yet it's the bigger enemy to your children than anything you want to say about the condition. To ignore it is the biggest mistake you'll ever make as a parent.

    Fact - you can do all the work you want. Your children will still be held back by society from leading a full life. I'm not saying your work is a waste of time. I'm saying it's less than half the job.

    So I repeat - are you going to fight for the rights of your kids? Or are you a coward like Mitchell?

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  14. "You would get respite and all the help you need to get that done quickly and effectively because of those who fight for Autistic Rights"

    Do you care to share whatever it is that you are smoking? It must be something good to be able to use a line like that with a straight face.

    "those "disabling" factors can be alleviated."

    Really? I'm so glad you told me that. Now since I am obviously missing something trivial here, please explain exactly how I can "alleviate" all of my children's "disabling" factors.

    Lets take an easy one to start, how exactly do I get my children to be able to speak, use, type, or otherwise communicate a full thought?

    Or ever better, how exactly do I communicate even a moderately complex idea back to them? How do I explain that if you run out into a busy street that you will be hurt when a car hits you?

    Please, be explicit in your directions because we have been working on these ideas for over five years with only a limited amount of success. I would love to know exactly what we are doing wrong.

    And once you explain how to get past these simple examples we can talk about more complex ones such as self-injurious behaviors, sleep disruptions, or biological problems.

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  15. Do you care to share whatever it is that you are smoking? It must be something good to be able to use a line like that with a straight face.

    I use that line because it's true and factual. If you find humour in that, then I ask what YOU are smoking! Are you against respite?

    Really? I'm so glad you told me that. Now since I am obviously missing something trivial here, please explain exactly how I can "alleviate" all of my children's "disabling" factors.

    Lets take an easy one to start, how exactly do I get my children to be able to speak, use, type, or otherwise communicate a full thought?


    Two words - Sensory overload. That's the primary reason why their functioning levels are down. You need to find the source of that sensory overload, and stop it. Cover all five senses AND the sixth (instinct). Leave NO stone unturned.

    Or ever better, how exactly do I communicate even a moderately complex idea back to them? How do I explain that if you run out into a busy street that you will be hurt when a car hits you?

    If you aren't giving your daughters room to move and run around SAFELY, then that's what happens. They want to run. You HAVE to let them - in a safe place of course. If you don't, you can't stop them running anyway into traffic and so on.

    Please, be explicit in your directions because we have been working on these ideas for over five years with only a limited amount of success. I would love to know exactly what we are doing wrong.

    Hopefully what I've said above is a start to move in the right direction.

    And once you explain how to get past these simple examples we can talk about more complex ones such as self-injurious behaviors, sleep disruptions, or biological problems.

    Once we get past the idea that these issues are CAUSED by Autism, you'll be better off. The presence of the condition makes these issues worse, but once you deal with the NON Autistic issue you'll be amazed at the improvement.

    Mind you, the age of your children is a factor. The older they are, the harder it will be. If any of them are approaching their teens and therefore puberty, time is running out.

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  16. Phil,

    You really don't have a clue, do you?

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  17. I have a much better clue than you do obviously, and that's bad for your kids because you have just shown you won't try what I have suggested.

    I was right. You are a coward - just like Mitchell.

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  18. Ah, yes, got me there. It isn't that you haven't a clue about autism in children but still like to pontificate about it, but rather that I am a "coward".

    Here's a hint, genius, sensory issues don't disrupt directly disrupt functional communication. They do cause disruptive behaviors and can (sometimes) make it harder to learn, but they don't directly block functional communication.

    In the case of my children, they don't have many sensory issues. And we have learned to help them adjust for the ones that they do have years and year ago.

    No, what is blocking their functional communication is that they either have a hard time learning the skills or they have a hard time using them.

    And as for the idea that having space to run around safely will help with receptive communication and situational awareness, well, that is perhaps the stupidest suggestion that I have heard.

    My kids have plenty of areas to "safely" run around in and many gross motor activities available to them whenever they want. Which, while it does help them focus better, does absolutely nothing to improve their receptive communication, give them the ability to understand abstract language concepts, or give them a better awareness of the dangers in their environment.

    But yes, the problem is that I am a "coward".

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  19. Here's a hint, genius, sensory issues don't disrupt directly disrupt functional communication. They do cause disruptive behaviors and can (sometimes) make it harder to learn, but they don't directly block functional communication.

    BULL! That's completely false. All Autistic Spectrum people have sensory issues that always need to be treated with respect - no matter where they are on the Spectrum! I have them for crying out loud so I know what I'm talking about! I am yet to see one who hasn't.

    In the case of my children, they don't have many sensory issues.

    I don't believe you, because by your own admission they still have problems. Whilst I acknowledge the improvement that has been made, the job is not yet done.

    My kids have plenty of areas to "safely" run around in and many gross motor activities available to them whenever they want. Which, while it does help them focus better, does absolutely nothing to improve their receptive communication, give them the ability to understand abstract language concepts, or give them a better awareness of the dangers in their environment.

    If you're pressing for receptive communication - stop. Pressing is bound to be causing a sensory overload and automatic resistance. Abstract language concepts are a long way off if they are still to communicate in the way you want them to, so you can forget that for for now as well. Sounds to me like you're trying to go too fast for them, and that might be another reason why they are running. They want to get away from you. I know the feeling! I don't know how old your kids are (and I'm not asking because it's none of my business) but when I was eight going on nine I did that. And I was higher functioning (I assume because I don't know what level your kids are at - and again I'm not asking for the same reason).

    Strongly recommend that you don't take the coward label as a badge. That only goes to show that you won't accept other ideas that just might help your kids, but you refuse to try all angles of reducing sensory sensitivity and avoiding sensory overload. Giving yourself a badge for that is a slap in the face to your kids. No wonder they want to run.....

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  20. Phil, you sound like an idiot. Seriously.

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