Curing Neuro-Bigotry

[Loralíenasa]

I'm not certain what exactly to say at the creation of this thread. I am only certain that it needs to exist.

Our society has wrestled throughout the ages with the unfamiliar, with the new and frightening and different. It is inherent in human nature to have a subconscious fear of "the Other." At times, this has led to the shocking mistreatment of entire portions of humanity. Being momentarily optimistic, I will say that where we are today in terms of Progress, we have in most cases taken a step back and re-examined the appropriateness of our internal responses to these groups. Look at our increasing awareness regarding the historical denigration of women, of people of colors different from our own, (recently) of homosexuals. With each passing day, we are learning more and more to understand that our long-held assumptions about people who are different are not only wrong but are fundamentally harmful to society as a whole. And in the later half of the twentieth century, we began to learn that we have been wrong about people with psychological disorders.

This last is thanks largely to advances in medical science, which have allowed us to understand that these disorders are caused by chemistry or wiring in the brain, and not by evil spirits or demonic possession as was once thought. There is, however, at least one set of human beings that is continuing to be misunderstood and mistreated, no matter how "enlightened" we seem to have become. These people are denigrated, violated, and systematically tortured by their own parents, teachers, and doctors, the very ones we are taught are there to bolster us with their love and support. This widescale human rights violation continues to go unnoticed, however, because society has been trained to overlook these people. We have been taught that these individuals are a tragedy, a drain on society, a heartbreak to their families, that they can not independently lead a successful or productive life, that they have a terribly debilitating disease which -- left untreated -- will force them into lives of loneliness and pain, and which if left unchecked to rage through the population will lead to the ultimate destabilization of civilization.

I am referring to autistics.

What I am attempting to accomplish here, in my own little corner of the world, is to pull the wool off of our eyes. To hopefully build at least a foundation of understanding among those few people I can reach with my voice. Whether or not any of you think this matters, I can assure you it does. It matters a very great deal to me.

To quote an autistic woman from a discussion group for people with Asperger's Syndrome (a form of what They call "high-functioning autism"):

Autistics are not demoniacs. This is the 21st century. Drop the pleading for a deliverance from the grim specter of autism, and stop the exorcisms, too. I want to bite my knuckles every time I see someone who sincerely believes that a solitary or uncommon personality is the result of spiritual bankruptcy or malevolent forces. [Autistics] will never be accepted when there exists a perception that that they must be purged of their vile shortcomings, and then they will be nice and complete, just like everyone else.
– Dana Troncalli

Are we really so narrowminded as a culture that we would, if we were able, "cure" people like Sir Isaac Newton, Albert Einstein, and Wolfgang Amadeus Mozart of the "peculiarities" that led them to produce their respective works of genius? Do we not recognize that if we all had identical minds, no one would be exceptional at anything? Diversity is not only what makes us beautiful, as a species, but it is what has helped us survive and advance. From an article I have just been pointed to and which I find both horrifying and hugely educational:

Failing to detect that people with differences have abilities and worth, because they fail to be like those self-designated as exemplifying capability and worth, is a denial of basic human rights. So is the insistence that people with differences prove by the criteria of those without, by the criteria of those who denigrated these differences in the first place, that they are capable and worthy and should not be denigrated and eradicated.

I also naively suggested to Dr Green--who is a mainstay of ASAT and the Behaviour Analyst Certification Board--that parents should accurately be told their autistic child is not more difficult than, but simply different from, a non-autistic child. She vehemently responded that being different is the worst possible thing. The brunt of science and history cohesively argue otherwise, and an abhorrence for human differences is usually spotted as a human rights problem. When acted upon, it is routinely greeted with social, if not legal, censure.

--Michelle Dawson, The Misbehaviour of Behaviourists

The most widely accepted "treatment" for autism is Applied Behavior Analysis (ABA). Basically it means that a person with autism is watched by an expert and punished any time he exhibits any behavior that deviates from the accepted norm, until he can "behave just like a normal person". (The article linked to just above talks about this in great detail.) Or in other words, medically sanctioned brainwashing through torture. And furthermore, since autistics have been determined to have no legal say in their own treatment, these "patients" are not even undergoing this torture by their own consent. Is this not, by any definition you want to work from, a massive human rights violation, sanctioned by society and our own governments?

And of course, being what they are, most people with autism are either unable or unlikely to campaign for the sort of widespread societal waking up that would be required in order to see a change in our attitudes toward autism. It is not a "tragedy." It is diversity. As I read on the icon of a person with Asperger's Syndrome, "There is no cure for autism. I'm happy being who I am. Cure bigotry."

To learn more about neurodiversity, check this out: Autism is as much a part of humanity as is the capacity to dream.

I am, by the way, an adult with autism. And I wouldn't choose to be any other way.

[susanna]

Originally Posted by Loralíenasa

And in the later half of the twentieth century, we began to learn that we have been wrong about people with psychological disorders.

This last is thanks largely to advances in medical science, which have allowed us to understand that these disorders are caused by chemistry or wiring in the brain, and not by evil spirits or demonic possession as was once thought.

There are at least some disorders for whom your explanation is wrong. One example is Dissociated Personality Disorder which almost certainly is caused by very severe and long-lasting abuse of a person, not by some organic disorder of the brain, though there may be disorders of the brain as a result of the abuse.

Actually for those disorders the image of some evil spirit is more adequate than some chemical explanations, though exorcisms are the wrong treatment of these "spirits" because they are parts of the personality and have to learn to be cooperative and to support the personality.

I agree with you however that training autist persons to behave like "normal" persons is some kind of torture and not a treatment that is governed by understanding and respect.

It is what I think the worst thing therapy can do: Make people function. Therapy should enable people to live happily.

Btw, we have had some thread about it in the Prancing Pony which you might like:http://www.council-of-elrond.com/for...t=Neurotypical

[Loralíenasa]

I didn't open this thread to discuss technical omissions I may or may not have made in referrence to psychological disorders in general, or differing opinions regarding the general diagnosis and treatment of mental illness. And I don't want the discussion to get bogged down with technicalities.

I started this thread in order to discuss autism, specifically.

<edit>
We seem to have had the same idea about one thing at least, susanna: that this subject requires more serious discussion than the Pony was able to afford.

[Dernhelm of Narnia]

I'm glad that I linked onto this in your sig, Loralíen.





And HATS OFF TO YOU!!!





I have a personal reason behind the support, and that's because my husband and I have a 7-year-old autistic son.




His official diagnosis is PDD (Pervasive Developmental Disorder) as a Highly Functioning Autistic person. *I HATE that "Disorder" part*




Anyway, our autistic son, Tyler, learns differently than our other children, and when he does, he shows flashes of pure brilliance. He also, when learns and understands others' emotions and tendencies, can be the most patient and empathic person in the entire family. Yes, he has outbursts where he flings himself onto a wall, our bites his own hand to the point of bleeding. But, sometimes I ask myself............can anyone really blame him for his feelings (note: not the action of hurting himself) - his feelings - of being sorely misunderstood? He's constantly being pitied, and he's getting to the point of seeing right through all the pity. He's wanting to be taken seriously, not to be branded as someone who doesn't have his head screwed on straight.






There have been some recent articles that have kept our spirits up. They have been written by autistic adults, and they are requesting the mental health community to stop trying to "cure" their autism. Reading your testimony only adds more confidence in how we are raising our son.





We have received a lot of flack from our son's teacher, other family members, and other well-meaning, albeit misguided, people who feel that we should be redirecting Tyler's behavior and speech patterns to fit in nicely with our other children and with other schoolchildren. We haven't been doing that. We have been trying to understand his use of the English language, and his points-of-reference (like his constant quoting from movies), in order to understand the context of what he's trying to convey. The home is a much more peaceful place, and Tyler grows much more readily than were we to try to change his very self.






Of course, his style of play is different than most children, but so what? That's all I can say about him and his patterns - so what?






You have our full support for your advocacy, m'dear.









Peace,
DoN

[Linnelleth]

and to DoN for having the courage to do what's right your family against the advice of the "experts".

In spite of our surface adoration of individualism, there is, in reality, far too much pressure to conform in this society, especially regarding children's schooling. Personally, I think it's just easier for schools and teachers to teach one way and judge their students one way, rather than putting in the effort to find out how students learn differently and trying to teach in accordance with the way students learn. Not only would such an approach be much better for autistic kids, it would probably GREATLY reduce the need for/use of behavior altering drugs like ritalin.

And big 's and to Lorien for figuring herself out, all by herself, and then embracing it, in spite of pressure and grief from family and society. You ladies are inspirational.

[tapstree]

Originally Posted by Loralíenasa

The most widely accepted "treatment" for autism is Applied Behavior Analysis (ABA). Basically it means that a person with autism is watched by an expert and punished any time he exhibits any behavior that deviates from the accepted norm, until he can "behave just like a normal person". (The article linked to just above talks about this in great detail.) Or in other words, medically sanctioned brainwashing through torture. And furthermore, since autistics have been determined to have no legal say in their own treatment, these "patients" are not even undergoing this torture by their own consent. Is this not, by any definition you want to work from, a massive human rights violation, sanctioned by society and our own governments?.

Once again, Lorien, i'm going to gently oppose what you quote about ABA. i've sadly quit my afterschool care with the young autistic boy for reasons not related to him, but the chronic chaos and unwillingness to speak to his needs within his immediate family . i never did get to the place where i was able to establish any ABA therapy with him. i worry about him often....

i understand your urgency to use extreme language (torture, brainwashing) in trying to get across even a notion of what some people in our society are subjected to, especially in the instances of where ABA therapy is applied. i've heard horrifying stories of children who are forced to undergo 40 hours a week of constant and continual ABA therapy with few breaks, and that is unspeakably cruel for any child.

But my experience in working with people with autism and ABA training is the farthest thing away from torture or brainwashing. i have to repeat: the therapy i've learned to administer is based on rewards and the positive reinforcement of "appropriate behaviours" (more on that below). THE most important element of therapy with a child with autism is positive rapport with the student that is delivered in a warm, caring and FUN environment. Most of the students i've worked with make it entirely easy to have fun at times.

i have struggled in the last couple of years in my work with special needs children with defining what is appropriate. We spend so much time trying to strike a balance between what the general population would call acceptable behaviour and what is acceptable to the child's unique needs and ways of interacting with the world. i have to admit that there's too frequently an inclination to only consider what the general population deems as appropriate.

The other day i was talking with a boy whose speech is quite difficult to understand and i couldn't help thinking, "People have told me that i have 'the patience of Job' with what i've had to deal with." But it's much the other way around - people with disabilities are the patient ones as they wait for us to enter their worlds and figure out what it is that they perceive, and want to express, and how.

[Loralíenasa]

Wow, I had long ago resigned myself to this thread's quiet death. Thank goodness I was not entirely correct.

I commend you wholeheartedly, DoN, for your approach with your son. Now if only we could get the rest of the world to be as open-minded.

[Dernhelm of Narnia]

and to DoN for having the courage to do what's right your family against the advice of the "experts".

Thanks, Linn. But, you know, we both learned a loooooonnnnngggg time ago to throw out all the parenting books, and just have the courage to raise our children based on our values. Throwing out the parenting books also frees us from feeling like we have to be perfect all the time.





I mean, how meticulous and nit-picky can these "experts" get, you know?

i have struggled in the last couple of years in my work with special needs children with defining what is appropriate. We spend so much time trying to strike a balance between what the general population would call acceptable behaviour and what is acceptable to the child's unique needs and ways of interacting with the world. i have to admit that there's too frequently an inclination to only consider what the general population deems as appropriate.

Tapstree, (how sad that you have regrettably left that job you had mentioned...........I didn't know of your situation) I have a feeling that this sentiment is what Loralíenasa and I are trying to get across, and this sentiment is reinforced heavily by Linnelleth who put it so eloquently:

In spite of our surface adoration of individualism, there is, in reality, far too much pressure to conform in this society, especially regarding children's schooling.

Bingo.







The problem that I have with the current agenda of ABA is that autistics are at the short-end of the stick, right from the very start. The assumption is that being and acting autistic is being akin to being and acting inappropriately. Autistics, just like people, come in all shapes, sizes, colors, family structures, and communities, and they also have in their heads and hearts their own dreams, aspirations, sensitivities, and fears. When Tyler was given his diagnosis, what I found sad was the reaction of others toward his autism. It was like he had an incurable disease. I was met with tears and denial from my own mother, anger from my father-in-law who felt that Tyler just needed a "good kick in the pants" , and way too many "Oh, Heather, I'm so sorry" responses to even count.






I think I was more upset about them than the diagnosis. His diagnosis was a huge relief for me, actually.






I obviously don't have the training to understand the ins and outs of ABA, and therefore I am quite naive of it and it's proponents. However, when it comes to learning appropriate behaviour, I feel that it is vital to keep discipline with morals and values rather than with societal trends and mindsets. I love how Tyler's teacher and his personal aide have been educating him on the reading, writing, and 'rithmetic, but we are at odds with all the attempts in his "mainstreaming." They are wanting Tyler to "fit in" better with the other kids in addition to their brilliance at furthering his understanding of language and math, and I am reminding them of my desire to keep the mainstreaming agenda focused on his schooling, not on what happens at the playground.






For example: Tyler often must miss recess because he "plays in the bathroom". I can understand when he gets in trouble when he tells others to "shut up" (he's actually quoting from movies, but that is inappropriate behaviour nonetheless). This results in a few notes I write to his teacher, and a few notes that she writes back to me. I wind up urging them to allow Tyler those few moments to play in the bathroom (he does it at home, doing facial expressions and lines from movies he likes), since it gives him time to "reboot." He then usually is more focused and cooperative, but I'm met with responses that this would lead to "chaos" and "lack of structure."






C'mon.............lack of structure? It's 10 minutes, tops, in the bathroom. And, honestly, how many kids play like Tyler? We have four kids, so we see for ourselves just how rare it is to see the other three children talking to themselves and imitating facial expressions in a bathroom mirror!






I think the chaos happens when other children come across Tyler doing his playing in the bathroom, and their lack of understanding of Tyler's quirks result in teasing/taunting from the bad apples in the bunch.




Why place the burden on Tyler's shoulders alone? I submit that Tyler does have a responsibility to be a good citizen, and that he eventually will be expected to own his own garbage, so to speak. But, where are the ABA proponents when autistic kids are teased mercilessly by other children? When will they (the bad apples) be trained to have "appropriate" behaviour? Why is the responsibility for acting with appropriate behaviour given only to the autistics by the mental-health community and by educational institutions?[/rant]






I normally don't get this riled up. But when it comes to my children, I can't help but get all Momma-Grizzly-Bear here or anywhere.






EDIT TO ADD: Loralíenasa, one step at a time. We're putting the ball in motion, hon.



Peace,
DoN

[Loralíenasa]

You are so right on the money it's a little scary.

Originally Posted by Dernhelm of Narnia

The problem that I have with the current agenda of ABA is that autistics are at the short-end of the stick, right from the very start. The assumption is that being and acting autistic is being akin to being and acting inappropriately.
<snip>
I obviously don't have the training to understand the ins and outs of ABA, and therefore I am quite naive of it and it's proponents. However, when it comes to learning appropriate behaviour, I feel that it is vital to keep discipline with morals and values rather than with societal trends and mindsets.

Yes, yes, yes.

My parents allowed me to play my own odd way as well; and while I'll grant you I'm quite clueless sometimes about social expectations, I think everyone I know would agree that I turned out to be a fully functional adult capable of being a contributing community member. Isn't that all we expect from anyone? Why all this pressure for autists to be brilliant play-actors as well? Because ABA can't stop an autistic child's brain from working the way it does; all it does is teach the child how to pretend. That's no way to be happy.

[Imahobbitgirl2]

How wonderful that I found this thread. Loralienasa, I don't know if you are on this site anymore, but I would like to thank you wholeheartedly for posting this. I, too, am an adult with Aspergers, and I also work at a school for children with autism, so I know exactly what you are going through. I was diagnosed as an adult, so all through my childhood I was bullied and bellittled not only by my peers but teachers and other authority figures as well, and nobody -- not me, my parents, or my teachers understood why I was constantly off in my own world. I was always told "Why can't you be like everybody else? Why can't you conform?" I always thought, why should I? Even today, as I look at these wonderfully special children I teach I see them as sweet, funny, adorable children who were shunted to that school because they couldn't get along with "normal" children in the "real world". I wonder why they are expected to conform; indeed, why I, as an adult, am as well. When I was first diagnosed, my father wanted to find an "adult" version of ABA for me -- there were none to be found. I'm certainly glad for that. Why should I have to "retrain" my mind because I can't fit in with "normal" society? (BTW, I hate the word "normal". I don't believe in "normal" and I never will. "Normal" is not what everybody else is, it's what YOU are, no matter who you are or how you act.) Why should these kids have to go through the same thing? I understand that they, and I as well, need to behave a certain way to successfully exist in society, but why? Why should I change who I am because I don't "fit in" with "normal society"? It's like changing parts of my personality. Autism is a part of me and always will be. Sometimes I do wish I was like everybody else, that I didn't have one foot in and one foot out and finally slip through the cracks because people simply don't want to deal with me. Our society needs to see that just because people like me are not like them doesn't mean we can't function and thus don't belong. The school systems, mental health systems, and other systems designed to "help" those of us who need it should be reformed to go along with our way of thinking instead of trying to change it. Why should we be different just because they say so? It's one of those things I don't understand and never will.

Once again, thank you, Loraliensa! I love hearing from people like me!

[vandevere]

I must've been one of the luckier ones with Aspergers. I was never harshly treated by my parents, or by the teachers in my school.

Of course, the bullies were an entirely different kettle of fish, but there really doesn't seem to be too much one can do about those, sadly.

Because of my parents, and the other adults who I interacted with in the school system, I seem to have grown up relatively well-adapted to the world. Of course, I'm still a little odd, by society's standards. But the life I'm living right now is a happy one...

[Gurthang]

I'm not really well read on the subject of autism, but I've seen a huge increase in literature about not discriminating against individuals with it, and a SLEW of posters dealing with diagnosis and medication. I pulled this from autism-society.org:

Here are some signs to look for in the children in your life:
Lack of or delay in spoken language
Repetitive use of language and/or motor mannerisms (e.g., hand-flapping, twirling objects)
Little or no eye contact
Lack of interest in peer relationships
Lack of spontaneous or make-believe play
Persistent fixation on parts of objects

I was diagnosed with ADHD and depression back when I was 12, and the next 6 years were the worst years of my life, having to deal with the mental (and some extreme physical) effects and side effects of the drugs. I wish someone would have actually listened to what was going on with me back then, but the hospital's ADHD/Depression Clinic knows best, eh? You don't engage the doctors enough? Here's prozac. Not interested in math class? Here's ritalin. Maybe now that you're hopped up on speed you'll make some friends, you dumb kid. Maybe I'm just projecting my own cynic issues into this, but I'm sure somewhere along the line, pharmacuetical companies are making money off of anti-social kids by redrawing the lines of legit mental health conditions to include everyone who just plain doesn't fit in.

[Imahobbitgirl2]

I know you aren't well-read on the subject of autism, Gurthang, and I know you have your own difficulties and challenges to overcome (as we all do), so you can empathize with me and people like me. For that, I am grateful. But that tiny list you found on the so-called "symptoms" of autism only covers a small minority of people on the autism spectrum -- the "lower-functioning" or "classic" autism. There are some children that are lower on the specrtrum than others; I teach some of them and they are very sweet, delightful kids. However, that, unfortunately, is what some people still tend to believe a person with autism must be -- the screaming, biting, hand-flapping, off in their own world, doesn't talk at all, "retards". (BTW, I despise the word "retarded"; I have been called that many times in my childhood. ) Hardly anything in that list refers at all to me -- I learned to talk at the regular age (And I can express myself very well, thank you very much.), I was never preoccupied with certain parts of objects, I DO look at people's faces while talking to them, and I happily spent my childhood in my front yard making up stories and acting out all the parts with different voices and everything -- if that isn't imaginative make-believe play, I don't know what is. Basically the only thing on that list that pertains to me is "lack of interest in peer relationships". Does that mean I'm not autistic? Of course not. What I'm getting at with this little rant is autism is very hard to pin down or group. There are many different symptoms and many different ranges in the autism spectrum to be classed as one thing or another. We're as individual inside the autism spectrum as we are out. (If anybody would like to know more, please feel free to PM me. I don't consider myself an expert on the subject, but I think I know a thing or two. )

There is no "cure" for autism and no medication to control it, and if there were, I don't think I want it -- as I said before, it would completely change my personality. Medical science is right now working very hard to find the "cause" of autism so they can find a cure. I am glad that they are focusing on it, (Though I am a little miffed that they are only focusing on working with CHILDREN with autism while adults like me fall through the cracks yet again) but that may be another symptom of a society that would rather drug our children up and send them on their way then REALLY HELP them, as you were explaining, Gurthang.

And unfortunately there are STILL people out there that loathe us because we are different. I recently read an article about Denis Leary saying in his new book that there is no such thing as autism -- Children, and as a whole, people, with autism are nothing more than "stupid and lazy" and their parents are bad parents. I took real offense at that. I've been call "stupid and lazy" my whole life until I believed it was true. Now I know I'm not, that there is a name for my differences. And I know for a fact that my parents are/were never bad parents. My mother was the only person in the world who really understood me, and my father, well, he is simply the most caring, loving, wonderful father a person could hope for. (All together now: awwww..... )

Then there was another celebrity (I can't remember her name) who believes that she has "cured" her son of autism. Oh, please. You can't "cure" autism. You can find ways to cope, and some of the symptoms may lessen over time, but, like some physical disabilities, it can't simply be cured with the wave of a magic wand. It just doesn't work like that. I believe that this celebrity didn't want the public to see that she had an "imperfect" child, so either she had some kind of wierd brain thing performed on him that was probably torturous to him (and maybe even illegal in some countries), or she simply lied. (This is all just speculation, though. I never read the article. ) This is yet another example of what I'm saying. Neuro-bigotry is unfortunately still out there in full force, and it is a very sad thing.

PS, Vandevere, I'm so happy to meet another Aspie on this board! And I'm doubly happy that you had such a great childhood. My childhood was good, don't get me wrong, it's just that various people didn't understand me. (Heck, I didn't even understand myself. ) I'm always reaching out to poeple like me. PM me, if you want. I'd like to get to know you.