Awhile ago, the Autism Society of America rebadged and relaunched themselves. Their website was overhauled and they launched an accompanying campaign which can be found at http://www.gettingthewordout.org – its very slick, very professional and totally misleading.
By contrast I urge people to visit Getting The Truth Out which is a much more realistic look at autism.
Its a big site and you’ll need at least a spare hour but please – when you go, read it all in one go. Don’t stop halfway through. Lots of people won’t get the message if they stop halfway through. It might be a very different message than the one you were expecting.
In places, for us parents, its not an easy read.
In other places it feels like we as parents have to accept that whilst we know our kids well we don’t know autism as well as autistics.
In still more places, this is a read full of hope and confirmation that difference is not equatable to bad or something that requires curing.
I’ll leave you with the plea to go visit this site whomever you are. Instead of donating money to a charity this week, please invest some of your time in reading this:
The young woman in this picture has autism, a debilitating developmental disorder that affects communication, socialization, and behavior.
The spots where she doesn’t have hair on her head are because she pulled it out so much that it never grew back. Self-injurious behavior is a common symptom. It’s easier to deal with her hair-pulling if her hair is cut very short.
The Autism Society of America (ASA) says that 1 in 166 people are diagnosed as somewhere on the autistic spectrum. They say that there is one autism diagnosis every 20 minutes.
Parents are devastated.
She can’t speak, so this website is speaking for her and many others like her. Our aim is to portray some of the realities of living with autism.
Once more I urge you: please find out the truth about autism.
Left Brain Right Brain 
When I first started reading, I was thinking, “What the hell is Kev sending me here for?” and to be honest, I almost stopped reading.
I’m glad I kept going. It was incredibly well worth it. Wow. Really powerful.
And now, of course, I see why Kev was recommending the site…
The Autism Society of America has been totally taken over by the quacks and mercury charlatans. It’s tragic that this could happen.
It’s pretty hard to know what to say having read that. Very powerful. It definitely helps me understand more of the things you write about here Kev – I don’t normally comment on your autism posts, but I have read them all, and with just as much, if not more, interest as the development ones.
Before reading your site, I can’t say I knew anything about autism (beyond Dustin Hoffman’s portrayal anyway), and I would find it hard to say I *really* understand that much now of course. However, I hope when I meet an autistic person (which I have no recollection of doing before) your writing will help inform the way I behave and communicate with them.
I imagine that, like any child, Megan has shaped your life considerably – probably in ways you never ever dreamed she would. It strikes me you are both very lucky to have one another.
All I can say reading that is … I’m lucky. If I had had less understanding parents, if I’d had a little more difficulty with just about anything, or if I weren’t so deadly terrified of embarassment …
… If any of those were true, I doubt I’d be able to control as much of my life as I have.
I’m lucky, and I wish I didn’t have to be.
The video of the autistic woman using the “Mackaw” communication device is … hard to describe… but “astounding” is pretty close. Autism Diva hopes everyone who goes to the site at least gets far enough to find the streaming video.
Thanks for sharing the link kev, its very important that as many people as possible can get that type of insight as Im sure it applies to a large majority of people – not jsut autistics.
Its a very powerful piece, its interesting, and its something we should all learn from and act on.
Linked back to:
http://www.mattian.co.uk/matt/1662/
“Getting the Truth Out” does an excellent job of countering the propaganda of those who appeal to pity by describing autism in the most negative terms.
Here’s a link to another site that discusses the tactics used by the Autism Society of America:
http://lindadiva.freehosting.net
I added both sites to my collection of autism advocacy links last week.
Thanks for the link Kev. Visiting it was time well spent. I can’t say it made me rethink the biomedical approach we are using with my son, a process to which I remain committed. But I certainly agree that too many people, including some in the biomedical movement, often resort to stereotypes that may not accurately reflect the effects of autism. Incidentally, I must point out that the Autism Society of America is not usually associated with the anti-thimerosal or biomedical communities.
Welcome back Wade, hope everythings OK your end.
I’m not sure it was specifically intended to address the Biomed approach exactly more the tendency of some people to dismiss autism in a series of continual negatives and/or dismiss it completely unless it fits with their own personal autism-apples definition.
I think you and I agree that we all need to avoid thinking of autism as an easy-to-define “thing” for which there is a one-size-fits-all answer. And we are certainly in agreement that the dignity of all people needs to be respected and protected.
As always, thanks for the good wishes. I’m afraid that things in this are of the States will not be okay for sometime yet, but I have no reason to complain. My family is well, and our home was spared major damage from the storm.
Kevin, I visited the entire site you linked to…featuring the autistic woman.
Can I ask something of all of you here? Did you like to see her like that? If she could do more for herself and communicate better… and be able to tolerate a greater level of human companionship…and enjoy greater independence… wouldn’t you want that for her? Had she been treated as a child, that MIGHT have been a possibility… Sadly, that chance has passed.
I know that adult autistics just want to be left alone…and provided for. Which is fine. I have no interest in attempting to cure Camille Clark or her son, Stephen Shore, Temple Grandin…or any adult capable of communicating a wish to be left alone.
I am, however, going to do everything in my power to see that my daughter doesn’t end up like that. I would consider that a great tragedy. A crime.
Hmm, I thought the site said she had been treated as a child…
It did Amanda. Erik, as ever, has selective vision. He’s one of the people I was thinking of when I typed my comment to Wade above.
You missed the boat, Mr Nanstiel. The person qualified to decide the worth of this autistic woman’s life is not you. She has spoken clearly and forcefully and she does not want to be like you. She does not believe that being like you would be an improvement. She is telling you that you are not qualified to make decisions about her life and her worth.
You have no right to judge this woman’s life, Mr Nanstiel. And you should apologize for doing so. She took huge risks and went through a lot of trouble to tell you that when you and people like you judge her existence as “tragic” and “criminal”, and when you and people like you exploit people like her to sell your anti-autistic views, you harm her and everyone like her. And you have totally disrespected her, and all of us.
She can live her life any way she wants to. I won’t stop her. However, I have much higher hopes for my daughter’s potential, and I intend to see that she reaches that potential. I have every right to say that my daughter SHOULD be fully communicative, socially adept & comfortable in society and independent. And I have EVERY RIGHT to say that that is better, yes BETTER than full-blown, profound autism. (Should she NOT recover, she will still be loved and provided for until we’re too old to do so)
I will never apologize for not wanting my daughter to be like that woman. Autism of that profundity IS a tragedy…not an alternative lifestyle. It’s a DISORDER that can be avoided.
But it sounds like all of you WANT the world to be autistic. As though the growing number of autistics in China, Africa and the middle east is “okay.”
I intend to support research that roots out the causes and finds both preventive measures and treatments.
No apologies. No stopping this, either. It’s too big and the sleeping giant (the parents) has been awoken. These children will be helped. I’m sorry if you can’t swallow that pill.
“Hmm, I thought the site said she had been treated as a child…”
I read that, too. To say that she had been taken to DAN! doctors does not necessarily mean that her parents had diligently followed the protocol… or perhaps taken advantage of new advances in that protocol since that time. There are many variables with biomedical that could have been missed. It’s different for everybody. And unfortunately, only about 30% seem to make a “full” recovery (meaning they are mainstreamed in the public education system and are indistinguishable from their peers).
I hope that the future will see higher percentages. Most of the children, however, see SOME improvement. The level of improvement is as much a spectrum as the disorder.
So, in other words, Erik, you don’t CARE what you daughter might feel – you want her to fit into society and wouldn’t dare think of trying to change society instead of bending to it.
You wouldn’t run the risk of embarassment for your daughter, but you would run the risk of killing her through untested and unproven treatments, right?
Sotek,
Parents run the risk of subjecting their children to anesthesia when they allow their teenagers to have cosmetic surgery. Parents run the risk of adverse drug reactions when they put their ADHD-diagnosed kids on Ritalin. Parents run the risk of increased suicide rates when they put their clinically depressed kids on Prozac. The fact is that parents make health-care decisions all the time for their children. All any of us can do is try to assess the risk with all available information, weighing the dangers against possible reward. Even after the Pennsylvania tragedy, I believe the risk is minimal. When all of the facts come out about that incident, we will have more information to weigh the risks. If the problem was with the procedure itself, we know that the risk is simply too great to use IV-EDTA. But I don’t think the problem was with the concept of chelation or the use of EDTA.
Contrary to what you have written, most of us care very much what our children might feel. I certainly believe Eric cares very deeply. I hope my son will approve the course of action my wife and I are taking. But if we wait for him to be able to communicate his wishes, we may never know.
Choosing biomedical interventions does not mean that we turn our back on the fight for dignity. Yes, we will continue to fight the school system to make sure my son is in an environment where his inclusion is encouraged and fostered. But that fight will not force other children to accept an autistic child. I don’t need my little boy to be just like the other kids. Indeed, I hope he remains unique. But I don’t think it’s a crime to help my child in every way possible to increase his ability to effectively communicate the thoughts and feelings I know he has, and to help him find ways of focusing his gifts.
Parenthood is about making choices, some of them more difficult than others. Based on the available information, I believe my choice is rational.
You have EVERY RIGHT to say whatever you like Erik. The tragedy for you and your daughter is what your words reveal:
is better, yes BETTER than full-blown, profound autism. (Should she NOT recover, she will still be loved and provided for until we’re too old to do so)
So if she doesn’t ‘recover’ then by your logic, she is ‘worse’ right? I wonder if she’ll feel that way?
I don’t know who wouldn’t want a daughter who, through her own hard work and determination, writes better and more powerfully than most people ever will. I don’t understand how “that woman”‘s outstanding work could fail to qualify as “full communication” , never mind be deemed a “tragedy” and “crime”, except via extreme intolerance.
What strikes me, when I read “that woman”‘s writing, is that she has the strength and character to survive how she was treated and has the courage to publicly communicate about this in order to try to ensure that other autistics aren’t harmed and exploited as she has been. I don’t see a single objection from Mr Nanstiel about how “that woman” was treated, in efforts to give her the “right” skills, to rectify and remediate and “recover” her. No, Mr Nanstiel is purely horrified about her existence, not her abuse and mistreatment on the premise that anything is better than being like her.
I’m too polite to say that I would consider it a tragedy and crime if any child of mine turned out like Mr Nanstiel, and that I would do everything I could to prevent this dire outcome. But intolerance is the worst human disorder, whether it is expressed in hostility, horror, and/or condescension towards instrinsic human differences and/or in the willfull spreading of false and harmful information about an identifiable group of people.
I’m a researcher, Mr Nanstiel. I’m a big fan of autism research. We’ve published a lot of science in peer-reviewed journals. I’m pretty sure none of this work mentions autism being a chosen “alternative lifestyle”, something unlikely to impress peer reviewers. This is not the kind of research you are interested in, because in conjuction with work from other cognitive groups, autism is empirically shown to be a unified entity which encompasses strengths not available to the typical population.
There have always been a lot of autistics. There are no more now than there have ever been. On the other hand, intolerance, a genuine poisoning of the human mind, has recently become epidemic in the “autism community”.
Erik:
I will never apologize for not wanting my daughter to be like that woman. Autism of that profundity IS a tragedy…not an alternative lifestyle. It’s a DISORDER that can be avoided.
Tragedy for who Erik? For her? It certainly doesn’t seem that way. The tragedy was the way she was treated, not the way that she is. And an alternative lifestyle…? At every turn you claim you love and respect your daughter and whilst I have no doubt you love her I cannot understand how you would choose to belittle the very sort of person that your daughter is by intimating it as a lifestyle choice. There’s no respect in that statement at all Erik. Not for the woman in question and not for my daughter, or your own. Its because of people who believe like you that I entered this debate on the side that I did. I take the same option as Emily Pankhurst, Martin Luther King, Ghandi….the world must change for the good of my kids. No more shame perpetuated by ignorance. You belong to the past Erik.
Wade:
Parents run the risk of subjecting their children to anesthesia when they allow their teenagers to have cosmetic surgery. Parents run the risk of adverse drug reactions when they put their ADHD-diagnosed kids on Ritalin. Parents run the risk of increased suicide rates when they put their clinically depressed kids on Prozac. The fact is that parents make health-care decisions all the time for their children.
Granted. But this is not a like-for-like situation. All those you list as treatments have a primary purpose of treating the symptoms you list – even if I don’t agree with them, that is what they are _for_ – whereas Chelation is something used to treat heavy metal poisoning. It has no intended or efficacy tested, or safety tested basis for treating autism.
Contrary to what you have written, most of us care very much what our children might feel. I certainly believe Eric cares very deeply. I hope my son will approve the course of action my wife and I are taking. But if we wait for him to be able to communicate his wishes, we may never know.
No one questions that any of you love your kids. I belive there are those amongst you who also respect the person that your child is too – certainly enough to listen to people like me whom you may not agree with – but I’m afraid people like Lenny Schafer and Erik here express opinions that propogate ignorance and verge (particularly in Schafers case) on bigotry. Look at what Erik writes:
I will never apologize for not wanting my daughter to be like that woman. Autism of that profundity IS a tragedy…not an alternative lifestyle. It’s a DISORDER that can be avoided……the sleeping giant (the parents) has been awoken. These children will be helped.
Look at this passage honestly Wade. Do you really feel that that isn’t both ignorant and disrespectful? The last part I find particularly chilling. It reminds me of Jehovas Witnesses who refuse to allow their children to have blood transfusions if they need them. They think they’re helping their children too. No matter what.
Choosing biomedical interventions does not mean that we turn our back on the fight for dignity. Yes, we will continue to fight the school system to make sure my son is in an environment where his inclusion is encouraged and fostered. But that fight will not force other children to accept an autistic child. I don’t need my little boy to be just like the other kids. Indeed, I hope he remains unique. But I don’t think it’s a crime to help my child in every way possible to increase his ability to effectively communicate the thoughts and feelings I know he has, and to help him find ways of focusing his gifts.
There’s nothing in that paragraph I disagree with in any way. Unfortunately, based on the utterings of people like Erik and Schafer who are blatantly intolerant of autistics, I think you are in the minority. Its still good to hear though.
Kevin, I am not intolerant of autistics. That’s where you and your friends’ brains have short circuited. Your bias against me causes you to extrapolate unintended meaning.
when I see that woman (I’m sorry I don’t remember her name) lying there with the lonely blank stares typical of autism…and read of her horrible experiences…all I can think of is how could this have been avoided? I imagine everything she has missed out on earlier in her life…and will likely never experience later in life. She may be “fine” with her life and merely want acceptance and love…and everything else that folks seek in life. But there’s a richness to life she’ll never have because of her disabilities.
My own child lost her childhood, thus far. By her age, I’ve already visited half the country. Had friends. Learned skills. Asked questions. My child, conversely, rarely leaves the house without great planning, or we risk her having a meltdown when she’s around too many people… and she knows nothing of danger, running straight toward traffic if you let go of her wrist for a single moment.
I’m just supposed to ACCEPT that? Sorry, but you’re crazy to think so.
And Michelle, you’re not helping the world of autism if you deny this epidemic…and the growing epidemics in the third world. How can you do effective research if you deny there’s a problem??? If we don’t learn to stop the epidemic and treat those already affected, we’re going to have a big slice of a generation of children who cannot financially provide for themselves or others… and be a drain (Yes, a DRAIN…let’s get real) on their families and on taxpayers. Estimated lifetime care of an autistic is $10 million here in the states. I don’t have $10 million. Do you? I’d call that a drain.
If we hadn’t spent most of our financial resources on treating our daughter… getting her to a point where she CAN communicate and learn and be independent… we could have used that money on her college fund. Or other worthwhile investments for the security of our whole family.
I intend to spend the rest of my life fighting the ignorance of those who feel autism is not treatable. I intend to aggressively promote research into the causes/triggers of autism…and how to treat it. If we succeed, there will be much FEWER new autistics entering society.
With that accomplished, we’ll have MORE RESOURCES to care for those we couldn’t help biomedically. However, If this epidemic continues unabated, available services for autistics will become scarce, because speecial needs are very expensive and demand will be too great. Their families will ALWAYS LOVE THEM. And they’ll ALWAYS be there for them, and do whatever necessary to facilitate their needs at home…and even fight the necessary political battles to facilitate their needs in society. But that’s a given.
Right now, we’re just trying to plug the holes in the dam.
Kevin, I am not intolerant of autistics. That’s where you and your friends’ brains have short circuited. Your bias against me causes you to extrapolate unintended meaning.
You espouse views that clearly demonstrate your intolerance. By blithely referring to autism as a ‘lifestyle’ you reveal the depths of your ignorance. Ignorance breeds ignorance and intolerance. As long as you are free to spread your ignorance unchecked you continue to make others ignorant and intolerant.
when I see that woman (I’m sorry I don’t remember her name) lying there with the lonely blank stares typical of autism…and read of her horrible experiences…all I can think of is how could this have been avoided?
Erik, please try and understand. They’re only ‘lonely blank stares’ to _you_ . To her they’re not. You are so tied up in how things appear to be. Please try and look past the outward and see the truth.
I agree with you that she went through some awful experiences but these were not caused by her autism specifically but how that autism was reacted to by others. As long as people are ignorant of the fact that people can have a valid internal life as well as external life then this ignorance will continue.
I imagine everything she has missed out on earlier in her life…and will likely never experience later in life. She may be “fine†with her life and merely want acceptance and love…and everything else that folks seek in life. But there’s a richness to life she’ll never have because of her disabilities.
No Erik, there’s experiences she hasn’t had because of the way others perceive autism. lets look at your example:
My own child lost her childhood, thus far. By her age, I’ve already visited half the country. Had friends. Learned skills. Asked questions. My child, conversely, rarely leaves the house without great planning, or we risk her having a meltdown when she’s around too many people… and she knows nothing of danger, running straight toward traffic if you let go of her wrist for a single moment.
My daughter sounds a lot like yours Erik but please try and understand that these are developmental issues. They can be planned for, they can be catered for. And the simple fact is that if the outside world were more tolerant then these things would cease to be an issue almost totally.
To lessen the impact of traffic noise (as well as the danger in her running into the road) we started a program whereby we took her to school firstly in a buggy. We got stares but these were soon overcome as we talked to people about _why_ we were doing it. After that we started walking round and meeting Megans learning assistant at a school gate that was closer than where the other kids went in. Again, people asked why so we explained why. The next stage (where we are now) was to get her to walk around to the normal entrance. The stages after that will be her walking round by herself. This could take years but it will happen. She works hard to acclimatise herself to the environment. By staging the process we allow her to develop acclimatisation at her own pace and we explain to all the parents and teachers we meet why we do it so they accept it as the norm. No one points and laughs. No one thinks any the less of her.
I’m just supposed to ACCEPT that? Sorry, but you’re crazy to think so.
No Erik, you’re not supposed to accept the situation you described. No one is saying that having meltdows or running into traffic is something that should be left unchallenged but I’m very much afraid that you are not doing your daughter any favours by treating her biomedically and ignoring the educative aspects of her development.
The whole of gettingthetruthout.org was (in my opinion) about trying to illustrate to people that what some people such as yourself see as a living hell, or a shell existence or lonely or any other negative connotation you wish to convey is simply wrong. The outward perception is far, *far* from the truth of the situation.
No one is saying that parenting a child who has a differing neurology than yourself is without its challenges. However, a snap panic reaction based on incorrect assumptions regarding your incorrect perception of the issue is not a good basis to begin a course of treatment that at best does nothing and at worst can kill or injure.
But the issue for you personally Erik goes way beyond the method of treatment. You are intolerant of a way of being that is different than that you consider valid. As late as the 1970’s psychiatry considered homosexuality an illness that required treatment (including electroshock therapy if I recall correctly). Nowadays that sounds (I hope) appalling, inhuman and more than a little bit silly. Based on the fact that you now _know_ that people can be reasoning, happy and comfortable with who they are _and still be autistic_ what makes your belief that this is wrong any different than those psychiatrists of the 1970’s?
Good job I had time to read the site all the way through: I’d gotten worried in case the GTWO site had commandeered my friend’s pictures for a bit there….
“The teachers encouraged the bullying as a way to toughen you up and prepare you for society. You cried a lot over this, and teachers, kids, and even your parents called you a baby and a sissy. You could never figure out what you were doing wrong, although you are sure it is something because people keep telling you to shape up. They act like it’s obvious what to do. You never know what to do and you’re always out of step. You’re also often in sensory overload at things that don’t bother other people, and you get blamed for overreacting or being too sensitive.”
That is basically what happened to me, and I’m still supposed to believe that having been hanged from the school gate was preparation for adulthood. Fact is, it wasn’t. It was preparation for a breakdown. It was done by two supposedly normal lads whose education was completed at a prestigious grammar school: I was the one who had to leave.
I was punished for what two non-pathologicals did to me.
There’s something WAY TO PATHOLOGICAL about that.
I’d rather be an autistic me than a normal one of those guys.
Given the billions of dollars spent on lighting and other special accommodations for sighted people, who now (horrors) make up a majority of the population, I suppose blinding everyone could cure that particular drain on society.
(Sarcasm here of course.)
Amanda, forgive my criticism, but your sarcastic analogy is not valid. The MAJORITY of Blind people CAN and DO contribute to society, and need nowhere near the assistance that children or adults with autism do.
And Kevin, please do not assume that we are neglecting our daughter’s education in any way. She gets a lot of OT, Speech therapy, some ABA, some Greenspan, and a host of other stuff the school system provides, also. I realize that there is a possibility that she may not recover what she once had. However we’ve seen GAINS through her treatments, so we are holding out hope.
Also do not assume that I do not tolerate autistics from my words. It is not the AUTISTIC, that I am fighting, but the AUTISM. The person and the disorder are two separate things (at least in childhood). A full-grown adult may be more or less neurologically “hard wired” where biomedical approaches are useless…but it is not too late for many, many children who are still growing and developing.
It grieves me how many people treat kids and adults with autism. I’ve not seen that reaction toward my daughter, but I have seen it anecdotally through stories relayed to me by other parents. When I say autism is horrible for all involved, I am not saying that the PERSON is horrible. Why would I? But you seem ready to paint me out to be a monster. Another one of your posters accused me of spreading evil through our foundation’s website.
We’re just trying to make these kids all they can be! Rather than relegate them to a life defined by a disability…a limitation. Give them a fighting chance to be “Normal,” a word you all hate.
I am not a wealthy man, and I will not live forever. I simply don’t trust anyone else to adequately care for her when I am gone….unless she is capable of full independence. Most autistics (who are not high functioning) are not capable of that. If they could all be like Temple Grandin (whom I admire greatly), I really wouldn’t worry.
Erik wrote:
“My own child lost her childhood, thus far. By her age, I’ve already visited half the country. Had friends. Learned skills. Asked questions. My child, conversely, rarely leaves the house without great planning, or we risk her having a meltdown when she’s around too many people… and she knows nothing of danger, running straight toward traffic if you let go of her wrist for a single moment.”
Just because her childhood is not like yours does not mean it is “lost.” I was also a child who darted away and became extremely hyper when in public places, and I very much enjoyed my childhood. I spent a lot of time reading books, imagining myself climbing to the sky on one of Dr. Seuss’ fanciful staircases or flying with a sprinkle of fairy dust like Peter Pan. I picked dandelions in the back yard, hunted for ladybugs to see how many different combinations of spots they had, and searched through pieces of gravel to find the prettiest sparkly ones. Maybe you don’t see any point to such activities, but not everyone is like you.
And by the way, Erik, I work and pay taxes, and I am appalled that my tax money is being used for genetic research to develop a prenatal test to exterminate people like me, on the ground that we are a useless drain on society. That is genocidal bigotry of the worst sort.
Mr Nanstiel, please provide a source (from a published study) for every autistic (you are talking about me) being a $10,000,000 drain on society, and that this is because we are autistic, and not because we don’t get the assistance, rights, and respect we need in order to succeed as autistic people.
In order for blind people to succeed, first, they need to be acknowledged as blind people, as people who cannot see rather than as people behaving/developing differently because they are mercury poisoned. Second, in order for blind people to succeed, they need assistance and accommodation specific to their genuine differences, as well as laws defining and protecting their rights as blind people. This is so they can wave white canes around in public and take dogs into restaurants and otherwise behave in ways which are very distinguishable from their peers. But if instead blind people were chelated (etc) on the grounds that they were not really “blind” people (“blindness is a myth”, says a prominent, well-funded group), but misdiagnosed mercury poisoned people, they would do very poorly indeed.
Then you could call them a big drain on society.
To see what assistance and accommodation and respect look like in autism, please read http://www.isn.net/~jypsy/AuSpin/senate05.htm
I haven’t time to respond to everything now, but regarding bonnie’s comment: “I am appalled that my tax money is being used for genetic research to develop a prenatal test to exterminate people like me, on the ground that we are a useless drain on society. That is genocidal bigotry of the worst sort.”
I agree we shouldn’t spend tax dollars on genetic research in autism. I don’t think this is a genetic problem to begin with. Sure, genes must play a PART in this, but the evidence pointing to environmental triggers is just too great to ignore. Research into these triggers won’t lead to horrible abortions of babies…they’ll lead to HEALTHIER babies who may never need to become autistic. They’ll be what their genes intended them to be…
And I’m happy that you work and pay taxes. That’s not in the cards for my daughter if we can’t help her… we’re working very hard to see that she can do exactly that.
I agree that being autistic is not an alternative lifestyle if that term means a different way of life that a person has chosen. But I do think that how one lives with autism, or with raising an autistic child, is at least in part a lifestyle choice.
If you have a child who is resistant to novel situations, you can choose to have her stay at home, you can choose to subject her to novel situations anyway, you can choose to ease her into some novel situations and teach her some coping skills for trying new things, you can choose to try to teach her to deal with situations as they are, and you can choose to try to exert some influence over new environments to make them more accessible to her. There are many different possible choices, which result in many different possible lifestyles.
Although the word “lifestyle” sounds so trivial, I don’t think it is necessarily so. When I look at the Getting the Truth Out site, I wonder how much of that woman’s present situation is the result of autism, and how much of it is the result of her institutionalization, which was a lifestyle choice that others made for her. I could say that her life as a free member of the community is an “alternative lifestyle” to being an inmate of an institution or group home, but there would be nothing pejorative in my saying so.
Everytime we ‘cross swords’ Erik I find it impossible to reconcile the person who quite obviously dotes on his daughter and is equally (and obviously) repulsed by what she is.
I’m very glad to hear of all the educative strategies you’re employing and yet if you ever do ‘fully recover’ your daughter I bet its the chelation that’ll take centre stage.
I disagree that autism is a seperate thing from the person. I’d recommend a piece by Jim Sinclair on why autism is not seperate in the same way that sexuality is not seperate, ethnicity is not seperate and gender is not seperate – these are all things that the ruling class have at one time or another been convinced there was a medical cure for. This quote from you:
It is not the AUTISTIC, that I am fighting, but the AUTISM.
Sounds like modern day religious anti-gay campaigners -‘ love the sinner, hate the sin’.
I’m afraid that by choosing to fight autism you automatically choose to define autism and those who are autistic as less than normal. Subnormal, to coin a phrase. By fighting autism you indicate your lack of understanding as to its nature and how it reveals itself. I’m ignorant of that too. All of us who are NT are. The cure for ignorance is the ability to shut up and listen to those who know what they’re talking about. The people who know what they’re talking about when it comes to autism are autistics.
Its about empowerment Erik. Not fear. Knowledge empowers. Fear maintains ignorance and intolerance. Emily Pankhurst knew that when she was committed to a lunatic asylum for protesting for womens rights. Martin Luther King knew that when he insisted on _peaceful_ protest. Ghandi knew that when he challenged the British on intellectual as well as ethical grounds.
It grieves me how many people treat kids and adults with autism.
And yet you refer to AutismDiva as a ‘fundementalist’. You make belittling posts about autistics in nappies as though that was the most important aspect of them. You maintain a website that concentrates on Biomedicality – if it grieves you so much where are your video’s interviews with autistics explaining why certain things aren’t acceptable? Where are your web pages that _demand_ respect for autistics? Where is your backing for a site like gettingthetruthout.org that seeks to challenge the way autistics are treated?
I feel bad that Erik is the only one here to defend the mercury causation and it’s accompanying quackery, but I really, really NEED to know what the documents are that prove this supposed explosion of autism in China, Africa and the Middle East.
Gimme some numbers Erik so I can confirm them. Please? See, how nicely I’m asking, because I haven’t found anything through regular web searches that show anything of the sort.
While were at it, why is there no panic over an epidemic in the Netherlands where they have a 1 in 172 rate for the whole spectrum. It appears that they figured out that that is their historic and current rate.
How about Australia… where they are saying that 1 in 100 are “affected” by autism, and also use the 1 in 166 rate, but no one is worried about thimerosal there. There are like 3 DAN! docs in all of Australia.
There are 19 DAN! practitioners for all of Canada. There are a lot of autistics in Canada, a rate of 1 in 166, in fact.
You can rub the stinky lotion on your daughter from now until you pass on and she’s going to be autistic. You could see if she could use a communicator like the woman on that website (she used a Mackaw). Did you notice the huge discrepancy between what she seemed to be capable of and actually IS capable of. Why couldn’t your daughter have those same abilities without ever using her voice?
Did you see “Autism is a World”? Same thing. Big discrepancy between inside and outside perceptions by ignorant people.
My child uses nappies, wasn’t it you who made the vicious comment about that?
My child doesn’t have a skill that can be sold in this economy, that doesn’t mean that xyr life is worthless. There are different ways that people “contribute” to society.
How about if someone decides to put you to sleep, euthanize you, when you can no longer “contribute to society”. How about if you get hit by a truck tomorrow and turn into a drooling “nothing”. Should society dump you in the nearest river because you would no longer be “contributing” to society? Believe me we can work out a price tag on the drain you’d be putting on the local tax payers at that point.
How about if you get a spine tumor or something that requires you to wear diapers from now on? Should we all discuss that and suggest that you might be better off dead because of it? Should we put your life in danger with experimental treatments for your new bladder control issues? Women frequently end up wearing pads for urinary incontinence as they age. Will you mock your wife if it comes to that with her? Or will you just chelate her some more?
Your child is a blessing even if she never talks and never gets a job. Society should feel privileged to have her among them, they should learn to accept her differences and make accommodations for them, they should not demand that she change for their comfort.
Wade, you excuse Erik for exposing his daughter to UNKNOWN risks by saying parents expose their kids to medical risks all the time – that parents are SUPPOSED to weigh risks and benefits.
And that’s my point. Erik didn’t. THE RISKS ARE UNKNOWN. SO ARE THE BENEFITS. He made a completely irrational decision – unless he feels that *anything*, including death or paralysis or any other possible problem is better than autism.
He’s declaring that a treatment that has no medical justification for the use he was putting it to is worth doing – despite the fact the risks are not known either.
You’re trying to obfuscate that fact by equating treatments with known risks and benefits to unknown treatments, and that is deceptive at best.
I found the website http://www.gettingthetruthout.org/ to be incredibly moving, especially in the way that it started with an “outside looking in” viewpoint and then shifted to the “inside looking out” point of view. Amazing!
I must confess that, like Erik and Wade, I initially spent a lot of time and energy trying to make my autistic children “normal” through “biomedical” treatments, ABA, the works (you name it, we probably tried it). We saw a lot of other parents with children the same ages as ours doing the same thing. But we didn’t see a lot of parents of older children. I didn’t understand why then – I do now.
What I have gotten from the Autism Diva, Michelle Dawson and others is a glimpse into what life looks like for my oldest son (my youngest “cured” himself after we stopped the biomedical treatments – anecdotal “data”). That glimpse has given me a lot to think about.
I had to give up a lot to come to terms with my son’s situation, but what I had to give up were primarily my expectations and desires, not his. I find myself thinking more about how his behaviors indicate what he is thinking and less on what other people are thinking about his behaviors. I must emphasize that this is what has been true for me – not what other people should do.
I realize that none of the parents who are using “biomedical” therapies are doing so in conscious disregard for their children’s lives – at least I hope that is so. And I don’t ask them to give up – just to try and be a little open-minded. So many of the parents I “meet” in the blogosphere are much more emphatic about the causes and treatments of autism than the actual data give them reason to be. Skepticism shouldn’t be reserved only for “mainstream” medicine and science – it should apply across the board.
Jim Laidler
Sotek,
Somehow I don’t believe that a GFCF diet along with some supplements present a very big risk, so I assume you are talking about chelation. In fact, chelation has been around for decades and the risks — as well as the means of minimizing those risks — are well known. I will admit that the benefits have yet to be proven and that the only data is anecdotal. One has to constantly assess whether true progress is being made to determine whether there is a benefit on an individual basis. I make it a practice not to discuss specific biomedical protocols that my family practices, but I will say that we have not hesitated to discontinue protocols when we see that there is not enough of a benefit to warrant even a minimal risk.
Dr. Laidler,
I too was moved by the site, and I would never pretend to be so omniscient as to know what is the right path for someone else. I came into the biomedical movement with my eyes open after being very skeptical. But there’s a difference between healthy skepticism and being closed-minded. When one keeps one’s eyes open, one sees things that can be very convincing. I would agree with you that any effort at biomedical interventions with the intent of achieving a preconceived notion of “normality” is doomed to failure.
Mr. Rankin,
Are you skeptical of the labs that tell you that your son is mercury poisoned?
IF you don’t think that is too personal to answer.
Do you consistently use Doctor’s Data for the heavy metals levels your child is supposed to have? If not Doctor’s Data is it Great Smokies or Great Plains, and how much are you paying for the lab results? Could you get those tests cheaper at a local lab?
If you use a local lab for liver panels or whatever else you are looking at to see if your child is not being damaged by chelation or “chelation”, why can’t you use local labs for the metals testing?
I haven’t seen a chelating parent answer that question yet.
A skeptical parent wouldn’t be railroaded into only using one particular lab. Are you willing to send a split sample under two different names or one sample, split and then one sent and one is kept frozen and sent 2 weeks later to see if the results are the same? That is, without tipping off the lab to what you are doing?
If you had a legal case where the results used to prove your client was guilty were from a mail order lab, would you just blithely accept them as accurate?
Maybe you don’t do criminal law, but I think you could imagine for a minute what a criminal lawyer would do.
You are giving some “experts” a free ride and not checking the facts or their backgrounds, looks to me. But I could be wrong about that.
—-
Who has those (documented) numbers from China!?
Qing. Wo yao zhei ge.
(Please. I need them.)
With the time I have available, I can’t possibly keep up five or six conversations. To me, what this comes down to is this: Autism is a developmental disorder caused by environmental insults to a developing immune and nervous system. Gut damage and direct neurotoxicity are the biggest components to what amounts to brain misdevelopment. Avoid these insults, avoid the autism.
If a child’s host of medical issues are diagnosed and ALL treated properly (most importantly the gut and toxicity issues), the child can begin developing normally again…and the autism goes away.
Any other arguments about autism and the person being one and the same are irrelevant where young children are concerned. Fix the problems, cure the child.
Adults are a different matter. Their “autism” is hard wired into their mostly-developed brain. They’ll always be autistic…and we have to accommodate that in society.
Camille, if you want to challenge the statements about the growing numbers of autistics in the third world… be my guest. I’m going off of numbers I received from David Kirby (personally) and folks like the Geiers…and a few others I’ve interviewed. It may be difficult to find those numbers, but I’m sure a sleuth like you can figure it out. (and probably find a way to misinterpret it in some way)
Wow, You KNOW David Kirby? Personally? Wow, that’s so cool Erik. Can you get his autograph for me?
What you believe and what can be stated as fact are two different things Erik. The only part of your statement above that is accepted as fact is this; “Autism is a developmental disorder”
The rest is possibly true on some level but your version of “environmental insults to a developing immune and nervous system. Gut damage and direct neurotoxicity are the biggest components to what amounts to brain misdevelopment” , means, to you, one thing. Mercury
There is no evidence of direct neurotoxicity you speak of. That requires high concentrations of mercury and clear evidence of cell death. If you choose to paint yourself in to a corner that’s your business. Intelligent people will continue to examine all evidence and recognize the real source of harm. If you don’t have the time to think about anything other than mercury as a cause, no one expects you to keep up five or six conversations.
Erik: I have to ask. Do you pay ANY attention to the implications of the words you choose?
Because it seems to me (from my perspective as an Aspie), that you’re either choosing your words to be as insulting towards me and anyone else on the spectrum as possible … or you’re not even thinking about the possibility that your words could hurt people.
I’d like to know which it is, or what third possibility I’m missing.
So if she doesn’t ‘recover’ then by your logic, she is ‘worse’ right?
We love you, honey, but we’ll love you more when you’re normal and just like everyone else.
Someone going by the name of “demonsbegone” told me that it was 1.8 million autistic children and that it came from an official article from China..
hah. The article is an interview with a neurologist from a childrens’ hospital that is in actuality an orphanage, from what I could find. He says, he estimates that autism is growning at 20%, but he may mean that the diagnosis is growing at 20%, at any rate, he doesn’t implicate anything, much less thimerosal, and he, being a neurologist would certainly note that he is seeing signs of mercury toxicity in the kids.
On the other hand, what would a little thimerosal do to the national mercury exposure considering that mercury is an ingredient in traditional chinese medicines and that the Chinese have a hideous record of polluting the air and water and besides that DO YOU KNOW WHAT CINNABAR IS????
http://asianartsearch.com/refcinnabar.htm
http://www.taiwaninfo.org/info/culture/culture9.html
I have several “chops” and …. ooooh… several little tins of the red ink paste which is supposed to contain….oooooh…. mercury!
How many children are made autistic every year in China since 1000 BC from licking their fingers after having used a chop to mark something??? What about all the pregnant women exposed to cinnabar? You really think that thimerosal can come close to the background mercury exposure there?
Don’t be silly. Anyway, it’s been a year since that doctor was interviewed and the Chinese haven’t stopped importing the vaccines have they??? Have they declared war and I didn’t hear about it?
I hope not… on the other hand, I have a Chinese name and speak Mandarin a bit, so I’ll be ahead of the game if they invade.
🙂
Bonni said: “We love you, honey, but we’ll love you more when you’re normal and just like everyone else.”
Bonni, it’s more like “we love you honey, and want you to have the best life has to offer. We want you to be independent, happy and fulfilled in all the wonderful ways we were able to be. We love you so much that we’ll do anything to give that to you.”
Right now, we’re lucky to keep poop off the walls, and to prevent her from hurting herself. Whether she remains autistic or not will not affect how much we love our daughter. If you’re a parent, you should know that. We want to cure her BECAUSE we love her and want her to have all the wonderful things a bright young girl should have.
And Sotek… I was not trying to insult you. I can only please ONE person on any given day…and unfortunately, today is NOT YOUR DAY.
“we love you honey, and want you to have the best life has to offer. We want you to be independent, happy and fulfilled in all the wonderful ways we were able to be. We love you so much that we’ll do anything to give that to you.â€
I want the same for my child. I can’t imagine very many parents who don’t.
The thing that disturbs me is that I was raised with pressure to conform at all costs, and with the knowledge that the way I was (because I am not like everyone else and I think differently, although I’m not autistic) was not good enough, was not okay, was not what they wanted. I spent many, many years wondering what was “wrong” with me, and how on earth I could possibly be something or something other than myself.
Turns out, I never could…
I’ve seen and heard many autistics say (or write) that they feel they have been pressured into “being normal”, into hiding their natural thought processes (as much as they are able). They feel ashamed to be who they are.
I would never wish such a thing on ANYone, autistic or otherwise.
Certainly, some behaviours are a huge issue. We’ve had to deal with the poop on the walls and with climbing up bookshelves to the ceiling and with climbing over fences and wandering off and with all kinds of other issues. We still have issues to deal with, and we do. I’m certainly no stranger to feeling desperately afraid for your child, wondering what on earth will become of them. Certainly, I understand wanting to help that child function in the world. I’ve spent many, many hours thinking, praying, researching, working in therapy, and so forth. I’m no stranger to what it’s like to be the parent of an autistic child.
But, at the same time, I always, always want my child to know and understand that we love her EXACTLY AS SHE IS, and what she is happens to be autistic (among many other things). I don’t like many of her behaviors, how could I? But I love the child, and while I do want to help her conform to the expectations of the world, I wouldn’t put her at risk to do that, and I try very, very hard to make sure that her therapy and other behavior issues are dealt with in a positive way, that lets her know that she, herself, is valued and loved exactly the way she is, bad behavior and all.
My comment about loving a child more when they’re “normal” wasn’t necessarily aimed at any one person, which is why I quoted Kev. I was actually making a generalized comment on an attitude that I see all the time, that normal is inherently superior and different is inherently bad, and anyone who is “abnormal” must be made to “act normally”.
I don’t know you, Erik. I don’t know your child, your family. I wouldn’t presume to think that you don’t love your child. I was merely taking the opportunity to comment on the “different is bad’ attitude that I see in the world at large.
In other words, it’s in no way personal. I have to know a person before i can make something personal. 🙂
Right-o, Erik.
Insults only matter when they come from someone whose opinion you respect at least a little bit.
So I don’t *mind*. I was just curious as to how a “normal” person thinks.
(And *we’re* the ones with no social skills? Yeesh.)
Kathleen Seidel has written about this at: http://neurodiversity.com/weblog/article/51/getting-the-truth-out …
And what is interesting is that through the comments the source of the photos for “Getting the Word Out” has been identified (stock photos from a company that supplies them for brochures and advertisements).