Autism Speaks: I was Wrong.

[SirNitram]

Those who know me well know I hate being wrong. It means I made a mistake somewhere, and in my overly-analytical phases, I can become tied up in that, scouring for a mistake I can't remember, beating myself up. Thus I will get to the meat and potatos, which I believe is the saying.

In the past, I have advocated Autism Speaks. I don't know if I did it in this forum. It seemed, on the surface, like just another 'Autistic parents trying to do the right thing' group. In the safety of my own experience, I assumed this was nothing bad.

Hoooo-boy. Was I wrong.

I will go down what I learned, and feel free to join me in disgust.

1) Imagine there was a site advocating for women's rights, and what they believed, in their dearest hearts, was the right way to treat a woman and their rights and their existance. Now, imagine this group had no women in it. You need not, of course; a number of religious groups have done this throughout time. We accept they are bad people.

Autism Speaks has no autistics in it's governing body. None influence policy. None are given the voice they claim to want to listen to, into the group's own workings. I've not found anyone who even claims to have a Spectrum Disorder in the ranks.

2) Autism Every Day. Say you went to see a movie, and it was billing itself as a gutsy and courageous look into the reality of being a woman. They did not interview women. The actions of the women, in some cases, were later found to be staged. In one sequence, in front of his wife, a man describes wanting to put her in the car and drive off of bridge, because it's so hard for him. They purposefully chose women who would 'act out' in the ways that would cause the most viscereal reaction possible.

Take the above paragraph and change 'Women' to 'Autistic Children'. Okay, you got it.

3) This is where shit gets controversial. The weak of spirit should run the fuck away. I bring up the most controversial subject among autistics themselves:

The Cure movement.

I admit myself being torn, but gradually am coming to be against. I finally sat down, after long articles for and against, and realized something. Groups like Autism Speaks, and other parent-focused groups, have one message for those on the spectrum.

Your existence hurts me.

Stop it.

Stop existing so I don't have to be troubled by it.

You're hurting me. Why do you want to hurt me? I just want you to not exist.

Actual folks on the spectrum want a cure for their own, varied reasons, but revolve around,

I don't want to force you to be anything but you.

But I can't keep this up.

I need to be like everyone else.

I think that attitude is bad.. Being 'cured' won't change you into a normal person.. But I can understand that more.

But the next time someone talks about helping an autistic kid, in their very young years, become normal, be careful. Think about the message.

If it's Your existence hurts mommy. You won't like this. But we'll make you stop hurting mommy. It doesn't matter that you don't understand. perhaps it's time to consider a different approach.


This is brought on mostly by conversations with others with the spectrum disorders. Times are better.

No one my age in the spectrum will start having a flashback if you say 'restraints', for example.


Okay, I'm done. I ranted alot. I shouldn't do that.

[LadyTevar]

Sometimes, love, you just need to get it out.

[Rogue 9]

I'm wary of any "cure" for autistic spectrum disorders. I can understand the urge to help someone like my little cousin, who is so profoundly autistic that she can't even learn to speak, but frankly, I have absolutely no idea who I'd be without my so-called "disability." It's such an integral part of my personality that removing it would essentially create a whole new person... and kill me.

Anyway, this is something I wouldn't beat myself up over too much were I you; I'm sure they did a very good job of putting a good face on it. There's no shame in being deceived.

[General Havoc]

I don't know Nitram, I have to say, I just don't know...

Autism Speaks is not a group I'm familiar with, and I can't speak with much authority on the matter of that group, the problem comes down to whether you consider Autism a community of people or a disease.

I'm not qualified to say that it's one of these things or another, but I would wager that there are times it is both. There are people with autism who lead rich, fulfilling lives, in some cases despite their autism, in some cases regardless of it, and in some cases perhaps because of it. Not being autistic myself, anything I would say about the nature of what autism is like for someone would be absurd. I can understand why such people would not want to feel branded with some "defect" or "disease" that everyone else feels they ought to cure...

...

... however...

While I appreciate that there are people, perhaps a great many people, who have Autism or Autism-related conditions, and do not suffer from them, and do not believe there is anything wrong with them, and feel stigmatized or condemned as "broken", there are also a great many people who have Autism-related conditions who do unquestionably suffer from them. Serious cases of Autism or ASD (Autism Spectrum Disorders) are not a "condition", they are not "a state of being", they are perhaps not a disease, but they are unquestionably a disability. I am not speaking of people who think in ways other than I do, or who approach the world in a mindset that is not mine. I am speaking of people whose minds are so affected by Autism that they are not capable of speech, or who compulsively inflict self-injury on themselves. I feel confident enough, despite my lack of ASD, to pronounce conditions like that to be outside the realm of "Neurodiversity" and within the realm of "disability".

And... having said that, I understand why people would take offense to that.

I would never advocate foisting a "cure" for Autism (if one should ever exist) upon people who did not want it, whatever the seriousness of their condition. I would never advocate the idea that everyone with ASD is defective or damaged, nor that anyone with such a thing is defective or damaged. But at the same time, I cannot in good conscience countenance the idea that we cannot develop a cure for the most severe forms of Autism because it would make those with less severe forms of Autism feel bad. There are levels of Autism that are, to my mind, unquestionably in the realm of disease, disorder, or whatever else you want to call it. To deny children who suffer from such things a cure because we are afraid of what it will be used for, or because we believe it will demean those who have lighter forms of it, or because we cannot be certain that they would not prefer to remain as they are... is in my mind a gross and unconscionable crime.

We lock up and denounce religious parents who deny vaccinations and modern medicine to their children because they believe it is un-natural. I am very uncomfortable with the idea of a parent forcing their autistic child to accept a "cure". But I am even more uncomfortable with the idea of a parent imposing what will be a life-long disability on their child because of concerns about Neurodiversity. And I am supremely uncomfortable with medical boards or governments or NGOs making the decision that children must be denied the opportunity to alleviate the worst forms of Autism because it will make other people feel bad about themselves.

I understand that the cure debate is large and complicated and multifold, and that I am not at all qualified to make judgments on whether or not it is a good thing or a bad, but I just feel that there are people that a cure for Autism could help, a lot, people who are suffering from it. Not all people with Autism are this way, perhaps not even most people, but there are people, children, whose lives will remain crippled unless they receive a cure. I think it is irresponsible in the extreme for us to refuse to even countenance helping them because of the "message" it sends.

But as I said, that's just my belief on the matter, and I could be wrong...

[SirNitram]

I want to ensure two things are clarified before I make any true 'rebuttal'.

1) Have you ever read anything written by an LFA? A novel, an interview, a testimonial? I realize this needs clarifying because I suspect most people who think of a Low Functioner is not able to communicate at all. They don't do it verbally. Their Stimms(Repeated expressive behaviors; mine is pacing) are often very eye-catching and sometimes worrying. One particularly severe case was a girl who was born who could not cry, had to be taught how to nurse, rocked her head back and forth in childhood, and so forth.

The woman I refer to is Amanda Baggs. She's part of the Austistic Association Of America. She's been on CNN. She cannot communicate via speech. She can, however, write via computer. If you would like to sit down and read her writings on being autistic, and her experiences with the cure movement, www.autistics.org has alot of her writings. It also has a booklist of stuff written by or edited by folks with varying degrees. I urge you to do this before you declare you know whether a LFA has it as part of themselves or as a disease. I believed your position until I read what they had to 'say'.

2) I want to be sure you understand the cure movement for Autism. I suspect, but am not certain, most people view it as the movements for a cure for cancer, AIDS, or Alhzheimers. It is not. There are scientists in labs who toil, thanklessly, for the goal of actually medically removing the trait, if not from those with the disorders, from their offspring and all offspring. These are not who the Cure movement goes to.

Behavioral Modification. Pharmatherapy. Aversion therapy. I imagine no sane person would think of strapping someone face down in institutional restraints as a 'cure' for Autism. This is something that has happened in the pursuit of parents who want their child to stop being so damned different. Hell, pharmatherapy is dangerous enough on normal folks; imagine pumping the drugs into a non-standard set of brain chemistry! There are cases of auts who, put on anti-depressants to 'cure' them, go from mild dislike of touch to feeling pain from it.

The movement is, almost to a man, parents. They do not care what the outcome is, as long as the child will act normal. It does not matter that the likliest chance is that, if they are made to act normal.. Say, by positive and negative reinforcing Behavioral Mod.. They will suffer tremendous burnout years later. They say things like 'You can't understand how painful it is to me', but never seem to think about what the child might be thinking.


I genuinely believe that most people never realize the above two. I hope so. I hope most people don't agree with trying whatever latest miracle cure is being peddled to slap a normal facade over someone, whatever the cost to their mental health. It's not about Pride or anything silly. It's about the fact it's damn scary to look out at the world which doesn't notice.

After all, they don't think we can communicate.

[General Havoc]

In regards to the point 1:

I have not, at this point, read anything by an LFA (Low-Functioning Autistic?). I have heard of such people, but as I do not have a vast amount to do with Autism, I have never made a point of researching the subject in much detail. I am aware (roughly speaking) of the various grades of Autism that exist, or at least that various grades of Autism exist, and that some are more severe, and some less, and that some operate differently than others. I do not pretend to be an authority on the subject, any more than I am an authority on the subject of child prodigies or paranoid schizophrenics or Tibetans or the elderly or any other group of people of which I am not a member. Consequently, I am just speaking in my own ignorant view of the matter. Nothing I say is dogma.

I was not aware that there were Autistics who were so strongly affected by their state that they were unable to speak, and yet able to cogently converse via other means. I know Autism doesn't work in the same ways as common sense would dictate, but that is a surprise to me. Still, while I agree that Ms. Baggs is, while certainly very different, hardly incapable of action, I wonder if there are not other Autistics who cannot speak, and also cannot communicate via computer or any other means? I truly do not know the answer to that question, but my... unlearned... opinion, was always that there are Autistics for whom their condition is unquestionably a disorder, just as any condition taken to an extreme is a disorder. That is not to say that it is a disorder in Ms. Baggs' case, or in yours, but that there are people for whom it is. I do not know if there are such people, as I do not know the extent of Autism's extremes, but I would assume that there are. It was those people I was referring to, when I said that the prospect of curing Autism did not seem to be an evil, and indeed that to remove it as a possibility seemed positively cruel.

Again, if the above is not correct, please correct me. I do not know how far Autism extends in its most comprehensive cases. (I'm making an effort to use neutral words in describing Autism here, but if I miss some, my apologies).


Regarding point 2:

Here we run into differences of language. When I speak of a "cure" for Autism, what I imagine is just that, a cure. A means by which Autism is eliminated within a given person (or his/her descendants, etc). I know that even that much is controversial, as it is in other communities that are perceived as being "disabled" somehow (Deaf communities and the like). My position in such cases is, and I apologize if this is offensive or distasteful, that it would be preferable for Autism to not exist at all.

I understand that to say such a thing alone is a massive nightmare of a fight in and of itself, and I understand why. I understand that there have been others who have said the same thing about everything from homosexuality to socialist political leanings. I understand that it's a very short step from saying "There should be no Autism" to "There should be no Autistics" and for that matter to "Let us fix the Autistics by any means necessary". I also understand that I say this as a non-Autistic person who is therefore by necessity ignorant of the experience of Autistics in the world.

I still say, that in a perfect world, there would be no Autism, and that the condition could be eliminated, not covered up or beaten into some semblance of normality, but simply eliminated, as one eliminates depression with anti-depressants.

However, that does not appear to be what you are talking about.

I am not fully aware of the history of Autism treatment, but I am aware of the history of treatment for other kinds of so-called "disorders" such as hyperactivity or sexual promiscuity, and they border on the grotesque, if not cross into it outright. I do not regard strapping someone down in restraints and shocking them with electrodes as a cure for anything, much less Autism. I do not regard experimental pharmacotherapy or certainly aversion therapy as anything short of pseudo-scientific charlatanry (and that being generous). If it is those behaviors that you are referring to as no longer being in favor of, then I cannot fault it.

At the same time though, I do question your assumption regarding the parents. It has been my experience that, while there are certainly exceptions, most parents love and cherish their children above all else in the world, and that therefore the parents that subject their children to such things are doing so not because their children are proving an inconvenience, but because they truly are trying to assist their children. Perhaps they are wrong, certainly I can think of cases where such intentions have turned ghastly, but even the Jehovah's Witnesses who refuse to inoculate their children or give them medicine when they are sick, even the ultra-vegan hippies who feed their baby only soy and mal-nourish them as a result, even those parents I firmly believe in most cases love their children, and are doing what they believe to be right for them, maddeningly and enragingly wrong-headed and ignorant though it may be.

I would be stunned to learn that most parents of Autistic children subject their kids to psychological torture for the sake of getting them to stop "being an embarrassment", though I acknowledge that it must happen.

[Rogue 9]

My cousin who cannot speak communicates through sign language. Even the most profoundly affected are capable of communication, and are quite aware even if they don't seem like it. The "therapies" Nitram describes are nothing short of cruel, to say nothing of counterproductive towards any end that might be described as an actual cure.

[Cynical Cat]

Martin, could you go into detail about your objections to pharmatherapy? Treating abnormal brain chemistry is one of it's major strengths. Please keep in mind you're speaking to the brother of a schizophrenic who has a life worth living because he takes four different drugs a day.

[SirNitram]

My objection is simple: They wing it.

I've never heard of two Autistics who were not biological twins being identical. This means every single case winds up with a slightly different brain setup, it appears. It's born out by the effects of pharmacuticals. Some people go hyper on an antidepressant, some can't actually engage in the sense of touch without intense pain, and so forth. The effects vary wildly.

There is no heavy research into the effects of drugs on Autistic Spectrum Disorder patients. But they give them out as cures anyway.

Think about that very carefully, and you'll discover the problem. This is not medical research, save for the research of someone whose deemed all children with the spectrum as his lab-rats, just as soon as the parents swallow his latest idea.

On the subject of parents. I strongly suspect it is nothing more horrible than perfectly normal selfishness. The entirely ingrained belief your children should be smaller, younger versions of you. But they tend to go for whatever they are promised today.

I will append a few quotes from something I consider to be a heavy indication of how the cure movement and adult autistics interact. It's the Auton case, which went before the Canadian Supreme Court. Dawson is an adult autistic. A large number are from the various parents. And then there's Ivar Lovaas... You'll see.

"You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense—they have hair, a nose and a mouth—but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person."—Ivar Lovaas, 1974

'It was the seventies', perhaps, people think. That's insane to think today. As bad as icepick lobotomies.

"[T]hey need to be taught virtually everything, and the teaching needs to proceed in minute increments instead of major steps. Thus, at the beginning of treatment, the individuals may be regarded as being close to a tabula rasa. In this sense, they can be considered very young or recently born, as persons with little or no experience."—Ivar Lovaas, 2002

There is nothing there, to this so-called expert. I will let you in on a secret. We're in here.

"There is something about autism that to me gave meaning to the phrase ‘death in life’. Autism is an impossible condition of being there and not being there; a person without a self; a life without a soul. […] She will not sit in the corner. She will not play with strings. She will not not look at me. She will not be mute. She may want it. I will not have it. She will be dragged, kicking and screaming, into the human condition."—Catherine Maurice, ABA parent, 1993

ABA is a type of treatment pushed by the Cure community.

"It doesn't matter if a kid can read and write and do algebra if he can't go out to dinner with his family."—Bridget Taylor, PhD, BCBA, referring to treatment goals for autistic children in ABA/IBI, in the New York Times, October 22, 2004

Doesn't matter if they can function. They desire Normal.

"The Charter does not exist to promote these stereotypes and prejudices by allowing equality, dignity, and participation only to those who succeed in a "medically necessary" treatment to eradicate their differences and render them indistinguishable from Canadians judged to be ‘normal’"—Factum of the Intervener, Michelle Dawson, Auton (Guardian ad litem of) v. British Columbia (Attorney General), SCC File No.: 29508

The court judgements.

"While increasingly accepted, Applied Behavioural Analysis (ABA) or Intensive Behavioural Intervention (IBI) therapy is not uncontroversial. Objections range from its reliance in its early years on crude and arguably painful stimuli, to its goal of changing the child’s mind and personality. Indeed one of the interveners in this appeal, herself an autistic person, argues against the therapy."—McLachlin C.J. writing for the unanimous Court in Auton (Guardian ad litem of) v. British Columbia (Attorney General), 2004 SCC 78

Pain and crude. To overwrite people's heads.

I hope this enlightens a little bit on what looks, from my perspective, like a very well-intentions paved road. And we know where those go.

[Hotfoot]

Martin, could you go into detail about your objections to pharmatherapy? Treating abnormal brain chemistry is one of it's major strengths. Please keep in mind you're speaking to the brother of a schizophrenic who has a life worth living because he takes four different drugs a day.

I'm going to chime in here, as someone who was unnecessarily medicated for nearly a decade.

Pharmatherapy works wonders in serious, extreme cases where the chemical imbalances actively make it impossible or damn near for the person to exist in society. When my neurochemistry was altered, my quality of life was not significantly different. In fact, now that I'm off of it, it's arguably better.

There is a LARGE movement in the modern age to solve problems by throwing drugs at it, because look at what it did in these extreme cases. If it worked wonders there, it must work wonders everywhere. Only that's not what happens. What commonly happens in my experience is a dulling of the person, if any major change happens at all. However, traditional theraputic methods are longer, harder, and overall more expensive. People don't want to WAIT for little Billy to calm down and take school seriously, they want results NOW. That's a problem.

It's a slight diversion into my own spectrum, but it's modestly applicable here, I hope.

[Cynical Cat]

To be clear, I'm not someone who believes in medicating the small stuff. Schizophrenia plus depression (what my brother has) is not small stuff nor is the more disabling types of Autism disorders. It took some old fashion trial and error experimentation to figure out which drugs and what dosage my brother responded the best too (mercifully they discovered some fairly effective drugs in the 90s that happen to work well for many schizophrenics, including my brother). Even with relatively well understood disorders there can be a need for trial and error.

If they haven't done any serious research, yes then just throwing medication at patients is a bad idea, especially if the intent is just to tranq them into docility without dealing with the real problem. Drug treatments for Autism isn't something I know much about and I will certainly defer to those who have done some research on the subject. Nitram's comments seemed to be knee jerk anti-pharma, which is why I asked for a clarification because drugs have really helped people with serious neurochemical disorders.

[General Havoc]

I can attest with absolute sincerity that pharmacological treatments can and do help people with serious neurochemical disorders. That is about as much detail as I'm going to go into.

However...

CHRIST on a wagon, that's some of the most terrible stuff I've ever read. I still refuse to believe that statements like that represent the majority of parents who want to cure their children's Autism, but any organization that panders that sort of crap is... well... needs not apply in my book.

I stand by everything I said in my last post regarding the most extreme autism cases, and that in a perfect world, there would indeed be no Autism, but... just... no

[SirNitram]

Havoc, your opinion in this latest post is totally agreed on. And I hope your thought on the parents is entirely true.

[Armaina]

Alright SOO I would first like to state that my youngest brother is aspergers and I have two autistic cousins. For this reason I've had plenty of personal experience with Autisim, how the child develops and much it varies between each.

I would also like to point out that giving drugs for this is just a really really bad way of resolving the problem because for they have not really found the true cause of autisim or any other spectrum disorder, so there is no proof that a chemical imbalance is the cause therefor seeking out medication at this stage just would seem to make the problem worse. It has more in common with a learning disorder, like dyslexia, throwing pills at it won't help, you just sometimes have to do things differently and learn things in a different way.

My parents were never of the 'your existence is hurting me' mindset, granted it was not easy growing up and sometimes really stressful raising my youngest brother. I can't remember when, but it wasn't until till he was older that he was diagnosed with aspergers. Knowing this helped us learn how to address worth with my brother better at least find a reason why he had such a difficult time with sound and other stimuli, how to teach him and other things. To my parents, they were more concerned about his well being, they know it's probably been as difficult for him as it was for them.

So hearing this about this so-called organization is just ridiculous, I wouldn't be surprised if the place was nothing more than a 'political stunt'. When you're going to support a group of people like that, you have to know what it's really like for them, how hard it is growing up not being able to communicate like everyone else does, not being able to understand things like everyone else does, the fact that no one is aspergers/autistic or a parent of such.

Also, the concept of a 'cure' seems incredibly silly to me. There's no 'cure' for downs syndrome, theres no 'cure' for dyslexia, there's just better ways of teaching them and helping them progress. The focus should be on that, not a cure that doesn't exist.

Something I'd like to throw out about most kids that have Aspergers or Autism that I find the most specular thing, is that so many of them seem to physically develop very quickly. One of my cousins started her puberty when she was 9 and both my cousins and my brother are oddly tall for their age, and this seems to be common with most.

[Batman]

Also, the concept of a 'cure' seems incredibly silly to me. There's no 'cure' for downs syndrome, theres no 'cure' for dyslexia, there's just better ways of teaching them and helping them progress. The focus should be on that, not a cure that doesn't exist.

Something I'd like to throw out about most kids that have Aspergers or Autism that I find the most specular thing, is that so many of them seem to physically develop very quickly. One of my cousins started her puberty when she was 9 and both my cousins and my brother are oddly tall for their age, and this seems to be common with most.

I find those two statements mutually contradictory. Like Havoc, I have no experience with people who suffer from that family of afflictions and thus never felt the need to read up on them so my take on things definitely certainly doesn't qualify as well-educated, but IF as you say Aspergers/Autism patients actually undergo accelerated bodily development, that to me indicates the reason is biological, which in turn means that there at least MIGHT be a cure. If biology is the cause for it, and since biology ALSO routinely manages to produce humans who DON'T suffer from these conditions, then it's at least theoretically possible TO find a cure for it. And I think that's something perfectly worthwhile to pursue.

Which DOESN'T seem to be what groups like Autism Speaks and their like are after. I applaud General Havoc for his trust in parents but I'm very much afraid SirNitram was right, at least after a fashion-most of the parents in those groups don't seem to want a cure. They want something, ANYTHING that stops their child being a bother and/or an embarrassment.
Which shouldn't come as a surprise given there's plenty of parents who feel about ordinary children that way already.

[frigidmagi]

Actually in the States at least an increasing number of girls are starting their puberty stages at or around 9 years of age. It has to do with the easy amount of resources I'm told. So in Armaina's cousin's case I doubt it's linked to any other condination.

[Armaina]

I find those two statements mutually contradictory. Like Havoc, I have no experience with people who suffer from that family of afflictions and thus never felt the need to read up on them so my take on things definitely certainly doesn't qualify as well-educated, but IF as you say Aspergers/Autism patients actually undergo accelerated bodily development, that to me indicates the reason is biological, which in turn means that there at least MIGHT be a cure. If biology is the cause for it, and since biology ALSO routinely manages to produce humans who DON'T suffer from these conditions, then it's at least theoretically possible TO find a cure for it. And I think that's something perfectly worthwhile to pursue.

Which DOESN'T seem to be what groups like Autism Speaks and their like are after. I applaud General Havoc for his trust in parents but I'm very much afraid SirNitram was right, at least after a fashion-most of the parents in those groups don't seem to want a cure. They want something, ANYTHING that stops their child being a bother and/or an embarrassment.
Which shouldn't come as a surprise given there's plenty of parents who feel about ordinary children that way already.

Well I would like to point out that's only my experience, you'd have to see if ALL autistic kids are like that before you can really make that assessment, but that's just been something common at least in my family. It could really just be coincidence. But honestly all it is, is just more right brain thinking. Sure some may say it's not possible to have a more 'dominate' side of the brain but considering the places where they have difficulty in tend to be a lot of left brain things it's not that bad of a theory.

But far as I know, no one has discovered any chemical imbalances that could cause thinking of that manner and suppress things like the language center.

[Mayabird]

Armaina: Yeah, I started menstruating when I was nine. It happens quite a lot these days even among the very-much-not-austistic, and it sucked. (Though at least I wasn't like other girls whose idiot moms would tell them, "Oh, you're a woman now!" At age nine.)

Also, why talk about chemical imbalances? It could very well be a structural difference in the physical brain itself. Certain forms of schizophrenia, for instance, are typified by larger ventricles in the brain and one area being larger on the right than on the left, whereas in most other people it's the opposite.

[SirNitram]

Two important genetic discoveries were made not too long ago, though I've long since lost the articles. A specific bit doesn't copy in the formation of most Autism Spectrums, which might be heavily involved. Wierdly, a so-called 'Trust' and 'Monogamy' gene overreplicates, giving those with it multiple copies. It increasingly appears neurological and genetic in nature, which reinforces that aversion therapy(IE, electrical shocks, physical blows, and restraints) and random drugging will not help.

[FickityTwists]

As a parent of a child with an ASD, I wouldnt want him to be anything or anyone but his spirited young self.
I dont want to fit him into a box, I am glad he is outside of it.
I dont join those groups, unless they do patitions on things that I am currently trying to fight for, for my son.
I was an out of sync child with sensory issues. So, I know what he could be up against.
Yes, times are getting better for a child with an ASD but the term Autism still scares people.
He is getting some early intervention, so that he may not have to go through the same things I did as a child. I dont want him to have to fight his way through school like I did. Being picked on because you think differently is not fair.
Plus, being a psychology major plays a part in my choice there. It doesnt make me a bad parent, it just makes me one that wants my son to be happy.
My husband is also a person with an ASD and he makes sure I fly straight.
Anyways, I have come to be very active in my sons life.
I am a stay at home mom anyways. So, I think his school is beginning to hate me. I want detailed progress reports once a week because I have seen him regress once before when not being challenged on a personal basis.
He is a super smart kid and I would hate to see him get lost in the shuffle at school because of other delays.
He knows his basic shapes, abc's, can count to 14, colors, animals ( and thier sounds) and can put together puzzles very easily and quickly. ( He just turned 3),but his social and communication delays could of prevented him from being able to be the best person he can be.
I am constantly doing research on the best way to teach empathy, socialisation and such to him through play. ( The best way to learn is through fun for children.)
He has come a long way since March. He now talks in small 3 word sentences and can name every object he wants or sees. Where as before he would say the object, but nothing else.

I am proud of my son and the person he is. I am not ashamed, I am just not going to exclaim his differences to the whole world. I feel its not my place. If he wants people to know when he is older, he should have the right to make that choice. Just like when he is 5 he will have an active part in his educational choices. ( I will have the final say, but he will have choices about what is taken as far as classes ect).
I follow his lead and support his choices. I want him to be independant and responsible.

I have made a group for parents of special needs children against Palin, but thats as far as it gets. Its not just for someone with ASD.

I am actually thinking of going back to school to become an Occupational Therapist Assistant, specializing in this area.

The OTs in this feild take advantage of people in my boat. It costs a lot of money to have a child on the spectrum. The therapies to help them be at peace with themselves and aid in thier learning cost so much money. No one should have to pay $120/hr for therapy for a child to aid in thier development!
So, yeah. There is my rant on the matter. It doesnt pay to have a child in this arena, because the therapies can cut a hole deep in your pocket.
I would do anything for my son. I get him these therapies and into these special programs because I think he deserves the best from me and from himself.

[SirNitram]

And now the ABA, 'Let's charge 100k to abuse children in various ways to force them to stop acting autistic' method is being pushed to be covered by insurance. Hey, perhaps they can insure the Abu Gharaib work as well!

I'm Pissed Off. I leave with a bit that shows how the kind of parents I ranted about think.

It was his mind they came for. They came to steal his mind. Before anyone gave it a name, even before I knew what it was, I knew it was in our house. I can’t say exactly how I knew, except that I could feel it. Not that I wanted to, believe me. They were very very dark things and there was no way to get rid of them. Sometimes I could hear them late at night when the house was very quiet. A creaking sound, an inexplicable hiss, a miniscule pop, a whistle out of nowhere. And when I closed my eyes, I felt their shadows passing over me as they floated through the house and drifted invisibly with the smoke of the fireplace chimney out into space back to God knows where. I didn’t like to think about where they came from or where they were going. It was too frightening. Dov was only a baby and something was trying to steal him away. Sooner or later I knew I would catch them swirling above his crib. I knew that was what they did whenever I accidentally fell asleep. A violent thudding jolted my senses awake. My heart was banging like two fists in my chest. How long had I been sleeping? My eyes darted over to the crib I was supposed to be watching. He was still there. I could see him through the white wooden bars, asleep, his small body gently rising and falling with each little breath. Night after night I sat beside his crib. I knew he was slipping away from us, away from our world, and there was nothing I could do to stop it from happening. There was nothing anybody could do, they told me. So I did the only thing I could. I guarded him, although I knew it would do no good. Because I could not guard his mind. And then one day it had happened. He was gone.

It's from a book called Strange Son, by Portia Iversen. It's full of this: Autistics aren't human. They're not even people. They're Changelings, the originals. The ones murdered because they were soulless, detached, monstrosities that were replacing the real children the elves took away.

We Don't Exist. We Are Not People. And people wonder why I lose my temper..

[The Cleric]

Wow Nitram, I think you should emotionally invest yourself some more in this subject, further eliminating your ability to approach it objectively.

[LadyTevar]

Wow Nitram, I think you should emotionally invest yourself some more in this subject, further eliminating your ability to approach it objectively.

Do you have something useful to say, Cleric, or are you just content with baiting the Autistic?

He is emotionally invested because that could have been HIM.

[SirNitram]

Wow Nitram, I think you should emotionally invest yourself some more in this subject, further eliminating your ability to approach it objectively.

Perhaps, instead of being a useless canker, you can offer some explanation why calling physical and emotion abuse, including electrocutions and restraints that have killed people, is not an objective assessment?

Oh right, you're just trolling.

[General Havoc]

It was his mind they came for. They came to steal his mind. Before anyone gave it a name, even before I knew what it was, I knew it was in our house. I can’t say exactly how I knew, except that I could feel it. Not that I wanted to, believe me. They were very very dark things and there was no way to get rid of them. Sometimes I could hear them late at night when the house was very quiet. A creaking sound, an inexplicable hiss, a miniscule pop, a whistle out of nowhere. And when I closed my eyes, I felt their shadows passing over me as they floated through the house and drifted invisibly with the smoke of the fireplace chimney out into space back to God knows where. I didn’t like to think about where they came from or where they were going. It was too frightening. Dov was only a baby and something was trying to steal him away. Sooner or later I knew I would catch them swirling above his crib. I knew that was what they did whenever I accidentally fell asleep. A violent thudding jolted my senses awake. My heart was banging like two fists in my chest. How long had I been sleeping? My eyes darted over to the crib I was supposed to be watching. He was still there. I could see him through the white wooden bars, asleep, his small body gently rising and falling with each little breath. Night after night I sat beside his crib. I knew he was slipping away from us, away from our world, and there was nothing I could do to stop it from happening. There was nothing anybody could do, they told me. So I did the only thing I could. I guarded him, although I knew it would do no good. Because I could not guard his mind. And then one day it had happened. He was gone.

Nitram, I gotta be honest with you. I read this passage and I don't see anything objectionable to it. I just don't. This reads to me like a parent who doesn't understand what is happening to her child, and is worried sick, and is metaphorically viewing Autism as some kind of demon stealing her child's mind. It's literary claptrap, but it is not evil, and it is certainly not some kind of torture mindset. Parents are not cruel for worrying about their children, nor is it evil to envision Autism as a negative. Blindness and deafness are also negatives. Schitzophrenia is a negative. Lactose Intollerance is a negative. Nobody is claiming that the blind, the deaf, the lactose intollerant, or the Schitzophrenic are not human. Nothing in the above passage indicates to me that the parent in question is some kind of evil torturer.

I just don't see it.