In this June 10, 2009 photo, Elias Cazares Jr., 13, participates
in the PEERS program at the University of California,
Los Angeles. The 14-week course helps autistic teens build
social skills.(AP Photo/Kim Johnson Flodin)
Some groups claim that autism is a vaccine injury, and have been disproven repeatedly. Others insist that it must be some sort of illness or disease, but their point of view has accomplished little other than to invite prejudice and discrimination against autistic people. Dr. Laurent Mottron, one of the top researchers studying autism, has gone so far as to say "We don't really know what autism actually is." What is known is that it affects the entire person, is not likely to be dietary or a reaction to environment, and is so utterly a part of the autistic brain and mind that the very notion of a "cure" would be absurd.
Aspies For Freedom, the Autistic Self-Advocacy Network, ADAPT, ACT UP, and other autistic rights and disability rights organizations stand by the consensus of the scientific community which currently believes that autism (including the entire spectrum) is mostly genetic, and likely to be a complex interaction involving hundreds or thousands of traits.
Given that, the hope of well-known groups such as Autism Speaks for a "cure" or a means of "preventing autism" (mostly a euphemism for prenatal screening similar to that which is available for trisomy-21, also known as Down Syndrome) is highly unlikely to happen.
There is no way to predict how functional a child will be later on based on initial diagnosis, and a person on the spectrum may be relabeled numerous times before age 13. Even so, there are hundreds of groups that hold this "curebie" perspective, as many autistic rights activists prefer to refer to it. Most of these organizations are infamous for refusing to include any autistic people in their leadership, and often even exclude them from the rank and file memberships as well. Many attempt to narrow the definition of autism and to disregard the presence of a spectrum outside of their message that it's a menace that must be stopped.
To the average autistic person, that comes across as being attacked simply for existing. As a result of this desire to not be "cured", the idea of neurodiversity, which states that all people have the right to be accepted regardless of their neurology, became more prominent in autism-related discussions, much to the ire of some rather venomous individuals who have gone as far as making death threats against autistic rights activists for their views.
Currently, the major concerns of the autistic rights movements are to address inequalities in employment, housing, health care, education, and so on. The primary messages of the autistic rights movement are that autistics have the right to exist as they are, the right to live in their communities in the most appropriate and most integrated setting possible, and the right to equal access to all public facets of life. In time, that message is likely to be heard by many more people...
Comments
Thank you for writing that.
Some of the trouble originates in the split nature of Autism where some individuals flip into a dire state, at about the age of vaccination, continiues for some years, then some flip back to reasonable ok. Sadly some do not and those are the dire cases.
That also explains many so called cures yet it happens anyway, always has. There is no cure, Autistic it is lifelong. I am age 60, with plenty more who are older.
Life was not what it ought to have been, fortunately a lot hidden by a lack of memory: many of use live enormously in the here and now.
We are not ill, although goodness knows other people try hard enough to make life impossible.
Is it easier for those of us who have managed to make a life? No. If it has two arms, two legs, two eyes, looks normal, jump, it is normal, and thump. Invisible problems mean that we have to face the lot, not even possible to explain, automatic assumption of faking, being awkward. Invisible wheelchair.
Wow, what a bunch of utter baloney. Autism is a serious medical condition that needs treatment and therapy if those affected hope to lead anything close to a normal life. This attitude of "acceptance" rather than treatment is absurd and causing life-long harm to an entire generation of children who already are going to have a tough enough time.
Stop promoting your own skewed agenda and start helping children with autism get the help they need to succeed in life.
MJ he did not say that we don't need treatment. What I believe he meant is that the quest for a cure causes us to feel threatened and that people who reject the Autism are ultimately rejecting their child.
Once again, we are not rejecting TREATMENT but rather the notion that you can cure us and make us not be Autistic.
I'm sorry to see you feel that way, MJ, but it doesn't sound like you have much first-hand experience. As Lydia kindly pointed out, I am in no way opposed to treatment, so long as it respects the dignity of the individual. I am, however, adamantly opposed to the idea of making an autistic child cease to be autistic. Honestly, your point of view reminds me an awful lot of certain people who shall remain nameless here. I wouldn't want to attract their egos, since they likely google their own names on a routine basis.
Actually I have quite a bit of experience with autism, being the father of three daughters who have a diagnosis of autism. You are free to have your opinion that autism defines who you are as a person but that does not change the simple fact that autism is a mental disorder.
If you don't think it is a disorder then we really aren't talking about the same condition and you need to stop using medical labels as a proxy for personality traits.
You seem to feel that a disorder defines you as a person but you are badly mistaken. You are a person, not a disorder.
Disorders need to be treated and cured if at all possible. I challenge you to name one other mental disorder that you think does not need to be treated or cured.
If you think that curing your autism would make you less of a person then fine, don't attempt to cure yourself. You do not however stand in the way of parents trying to help their children.
Autism needs a cure - as does your misguided opinion
Exactly how am I disordered? Exactly what is wrong with me? Can you answer those questions? Personally, the only issues I seem to have are personality traits. Autism is no more a disease or disorder than color-blindness is. You don't see people going around saying we have to cure the colorblind of their way of seeing the world, do you?
Do you have a DSM-IV diagnosis one of the pervasive developmental disorders that make up what is referred to as the autism spectrum? And by this I mean the diagnosis was done by a trained professional who is qualified to make such a diagnosis and that the symptoms had to appear before the age of 3. If this is the case then you have answered your own question - your diagnosis will tell you exactly what is "disordered".
If you do not have a DSM-IV diagnosis under the PDD category, you have "self identified" as having autism, or received your diagnosis much later in life from another source then we really aren't talking about the same condition and you need to stop misusing the word autism.
If you have child with autism you do not have to ask such silly questions as what is disordered - it is very obvious.
Yes, I have a DSM-IV diagnosis, and have had several over the course of my life. Unfortunately for your attempt at proving a point, the DSM is already acknowledged as heavily flawed. Just remember, homosexuality used to be listed in it as "Same Sex Attraction Disorder" until activists worked to fix THAT disorder. The disorder I speak of is not one of the mind, but rather a cultural disorder. Similarly, I consider the insistence that autism must be eradicated to be a cultural disorder brought about by ignorance and a desire for conformity. It's cured by education and changes in laws to end discrimination.
By the way, MJ, you still haven't answered my question. My specific diagnosis is "autism". The DSM does NOT make functional differentiations because there is no objective measure of functionality. One person's low can be another's high, making the designation meaningless. Given that, define, in clear, concise, and obvious terms, exactly what is wrong with me being the way I am. Make it an "operational definition", and if you don't know what that is, then you clearly do not know enough to make the statements you are making.
I do not have autism, but I have been around students (and friends) my entire life. Some of them have it harder than others, and treatment is without a doubt needed in some cases. Just as treatment for a problem leg (which I have) is needed.(Therapy,ect) Some would suggest that rather than continue to support my bum leg, I might replace it with a new one to cease the problem. (if this were possible) Would this be wrong? I don't know, but if i chose to replace it, i wouldn't be MY leg i'd be walking on. Of course, no one would claim that my desire to keep my leg would be getting in the way of other people's right to get a replacement...just as I do not think someone claiming that autistics can be fine and functional exactly as they are is standing in the way of anyone who would wish to be "cured" of this "disease" if they had the chance.
But rather than make a world where no one has to suffer with autism, why not make a world where people with autism don't have to suffer
"The disorder I speak of is not one of the mind, but rather a cultural disorder"
Hence you do not believe that autism is a mental disorder and we are not talking about the same thing. I suggest that you stop misusing a medical term when you are clearly talking about something else.
MJ, I could be mistaken, but I think the author is saying is that the problem (just as important as the actual medical problem itself,) is the general mental attitude those who are not afflicted with autism have towards those afflicted with it. Some people automatically treat them differently upon learning of their label. People have a hard time dealing with what is out of the ordinary, get uncomfortable around it, and can't relax with it. Operationally speaking, that is no less a mental handicap than the disease they are so eager to label as one.
There is a line that needs to be observed. Is this "cure" for this "disease" really about making it easier for those afflicted with the medical term "autism" or is the "cure" more about making those afflicted with autism fit in with society better, making it more easy on everyone else who is "normal." As long as emotions are so high around the issue, there is no way to know for sure. Which is why the people afflicted need to have choices.
James - what you describe regarding a cure is a false dichotomy. It is not about making it easier for society or easier for the individual. It about treating and attempting to cure a very serious medical condition.
If you think about someone with clinic depression, the discussion isn't focused on making it easier for the individual or making it easier for society, it is about treating the condition that has a large impact on quality of life. No one argues that being depressed is just a different way of being that that there is nothing "disordered" about them because that view is clearly wrong.
If you notice Marc failed to mention one other disorder that he feels is the same but mentioned instead homosexuality. And while it is true that it was one considered a mental disorder there is no parallel between the two.
Children with autism frequently have trouble with even the most basic forms of communication and socialization and to label that just a "difference" is absur
James - one other thing about people begin afflicted needing to have choices. You have to have the ability to understand the concept before the idea of a choice has any meaning. If you lack the ability to even understand the question then it isn't really a choice, is it?
Oh, and there are a large number of people with autism who lack the ability to understand a concept like that, a fact that Marc and his ilk frequently gloss over. But they are more than willing to speak for them.
MJ, if you want to continue this discussion, you will have to do so via email. I will not continue this on the comments of this or any article.
MJ, do you know what makes a choice a choice? Or what makes a non choice a non choice? I don't, and I doubt you do either. Do you really choose to have sex, or is that an impulse? Sure you make the final call, but is that call inhibited or brought about by a certain need that might make you do things you wouldn't do if the need wasn't there? Do ANY of us really have choice? It's debatable, and by no means something we can cover here.
But to freely assume that just because you cannot understand why someone makes a choice they make, even in those autisics we cannot communicate with, we have NO idea what is going on in their mental process. To assume there is nothing there...well we don't really know that do we? We're just guessing, based on our own experiences as to what we THINK a choice is.
We aren't sure what is, and we never can be. Until we can be, we have no right to decide on a universal level who is capable and who is incapable of making one.
James, you misunderstand me. I am not implying a lack of intelligence or ability to understand. A diagnosis of autism says nothing at all about intelligence.
I am simply pointing out that you would be unable to use language or other communication methods to make the your options known nor would the individual be able to communicate their choice back to you. If you don't have the ability to communicate the options or receive a response it makes any suck choice moot.
Disrupted ability to communicate is not a "difference" it is one of the core features of autism. Autism is not about civil rights, it is about a very serious disorder that should be treated.
We are not in disagreement that in many cases, autism should be treated. What I fail to understand if how the point of view of this article's author is getting in the way of those who want and can recieve treatment. Research isn't going to stop because he or anyone else says they are happy the way they are, it just might mean that treatment will not be forced upon those who do not wish to recieve it.
I often wonder why this view offends people so much, and gets them on the defensive so quickly. But I am not nearly as invovled as some, so I am probably not the best judge for this.
I believe that the author is actually of the opinion that autism should not be treated except in superficial ways.
Let me quickly explain why I suspect this is the case. If you notice he mentions he work of Dr. Mottron - this researcher is more on the fringes of autism research than mainstream but more importantly works alongside someone named Michelle Dawson. Ms Dawson is an adult with autism who spends a great deal of her time bashing ABA and trying to convince parents not use to ABA. She was also instrumental in defeating efforts in Canada to have government sponsored ABA programs.
So while the authors says that he is just against a "cure" but for treatments I would be willing to bet that he also against ABA style treatments.
So the harm is if this group gets their way ABA style treatments would not be used to treat autism. That would remove the single best option available today - there are no other treatments that work as well.
Marc, please correct me if I am wrong
Well, its understandable why you might think that. But you are attacking things that aren't in the article, that are speculation on your part, and all come down to opinion in the long run anyway. So not only are you attacking his thoughts based on thinking he might be thinking this because he said this about someone else...but even if he were saying that which he isn't, there is no operational definition to say "better" or "worse". This makes your response look very emotional...which it probably is, as I know mine would be if I had it as hard as you do.
I am not going to argue what is better or worse, because I do not know...but I will say that you seem to be assuming...and that old idiom about assuming still applies. But even if everything you said you think he is thinking by saying what he said is there...there are better ways to go about disproving what he is saying rather than calling it a "bunch of balony"...emotions are high enough on both ends...we need intelligent debate.
I can understand that it seems like I am making big assumptions about the author's positions but I have had similar discussions before and I have seen these same arguments many times now.
There are telltale statements in the story and in his comments that are pretty good indicators of what his view are. Notice the arguments about how there is nothing "wrong" or disordered about autism and about homosexuality once being considered a mental illness - these are some fairly common statements.
I have absolutely nothing against trying to educate society so that it will be more accepting of people with autism. My own children are going to need all the acceptance that they can get.
But autism is a disorder that needs to be treated and cured if at all possible. And people who are trying to push autism as a civil rights movement are actively trying to stop this from happening.
But please don't take my word for it, keep reading on the subject and come to your own conclusions.
There is a huge difference between treatment and "cure". Treatment is giving your kids the skills and knowledge they need to live in the world. "Cure" is a fantasy in which you take your autistic child and, by the wonders of magic/science (take your pick, but the average person is often unable to tell the difference), exchange him/her for a child who looks identical, has an identical voice, and so on, but is no longer your autistic child. Your children will always be autistic. The real talk of "cure" is "prevention", which is done the same way Down Syndrome is prevented - abortion. Would you want your child aborted if you knew said child would be born autistic, especially since there is no way to determine the outcome in advance if your child does turn out to be so? Do you consider that child's life less worthy of being lived than that of a neurotypical child? Give it some thought, because THAT is what your "cure" really is.
So Marc, why did you delete your prior comment and my response to it?
My comment was unnecessary, so I deleted it. As a result, your response had no reason to remain there.
Ah, so you did not mean to say that you believe that using therapies such as ABA that are designed to reduce the core problems of autism is the same as saying that parents don't accept or love their child? I completely understand, a position like that would make you look bad. Not that your rant equating a cure with autism with abortion didn't do that anyway.
But you do realize that by deciding to censor comments you have effectively ended the possibility of having any sort of discussion, don't you?
So let me just say in closing that your arguments are baloney and your beliefs unsupportable. Autism is a profound mental disorder that can cause life long problems for the people afflicted. It is not a civil rights movement. So stop being part of the problem and start being part of the solution.
Autism is treatable and, hopefully, one day there will be a cure.
MJ, it is one thing to disagree with someone...it is another to completly disregard their opinion and act like their beliefs couldn't possibly have any value since they aren't yours...it comes off as if you are doing the latter.
You might call what he did censoring, but maybe (I don't know for sure) but maybe he said something in the heat of the moment that was overly emotional and he wanted to correct himself, realizing it was irrelevent, or too wound up. It seems like he has made an effort to get past insulting you (although you have pulled no punches concerning him, and your responses do come off as even more emotional than anything he deleted) and wants this to come to a close, since it is obvious neither one of you is going to convince the other.
I don't think it's particularly fair to act as though that somehow makes his opinion invalid...but that's just MY opinion.
James, I apologize if I am coming across as harsh but I think you are missing a great deal of the issue here. The comments are limited here but let me see if I can give you an idea of the issues.
Assume for a minute that you have a child that suffers from autism. It renders them unable to communicate, unable to understand any social interaction and fixated on rituals and patterns - sometimes they hurt themselves because of it. This is not some abstract idea of autism, this is what I experience every single day.
Assume that you have found some treatments that help teach your children how to communicate, how to be social, and how to deal with stress so they don't hurt themselves.
Then a perfect stranger appears out of the blue and shouts to the world that you are a bad parent and clearly don't love your child. They say that you should just accept them for what they are and not try to teach them because it would be wrong to change them.
As a parent, what would your reactio
That last line was meant to be -
As a parent, what would your reaction be?
Where have I said that it's wrong to help kids function in their environment? Doing so isn't the same as saying that they should be exchanged for a neurotypical child. Your kids, MJ, were born autistic, and so they shall remain. Within that, though, there is still quite a bit of potential, and progress is always good. It does not equate to making an autistic child non-autistic, nor should it be perceived as such. Your kids will NEVER be "normal", but that doesn't mean that they're suffering, or that they shouldn't be allowed to live as they are. What I'm saying is that they have as much a right to live and thrive on their own terms as anyone else does, and that this should not be infringed by so-called "cures". Assistance and support aren't cures, they're tools that you provide your kids to help them succeed, and for that, you should be commended. Even if your kids were never going to be able to speak, their right to exist as autistic people would be the same, though.
I understand that's what you go through every day MJ, and I admit I can't imagine how hard that is. But you seem to have the idea that ALL or MOST autistic people are so afflicted that they can't communicate or function, when that is simply not the case. Many of them function completly fine without much treatment or therapy or any at all for that matter. It comes down to this--how much is it affecting the life of the individual.
For example...some people might hate assberger's syndrome, because they have problems with social interaction and making friends...at the same time, maybe genius's and polymaths have assberger's and wouldnt trade that for the world for what it has (indirectly) enabled them to do. Would you be in favor of a blanket cure for this, for those who don't want it? Or should the idea of any type of "cure" be made on a case by case basis?
The only absolute in this world is there are NO absolutes, and we can't let our personal experiences influence us to see in them.
James - First, every person who has a diagnosis of some sort of autism does have disruptions in their ability to communicate and in their social skills. If they don't then then they do not have autism. You are correct that there can be a difference in severity BUT very few are able to function "completely fine" without treatment.
Second, there is no relation between a diagnosis of autism and any sort of genius - this is a myth. Intelligence and autism are orthogonal concepts.
Third, if a person does not want to be cured then don't cure them. However that is not the real issue here - the real issue is whether autism is a disorder that is deserving of a cure or just a quirk that does not.
But this discussion is going in circles and the size limit on the comments is getting annoying. If you are interested in this topic I suggest you look into it more, there is a lot online from all "sides". If you want to continue this discussion we can on my blog Autism Jabberwocky.
Well...i have one autistic friend who remembers every single word from every movie and TV show he ever saw...many genius's would give an arm or a leg for that type of memory.
More than "just a few" are able to get along fine without treatment, but yes, many of them do require some level.
I am fine with ending the discussion here, as it seems we aren't going to get any further. I appreciate you at least being more respectful towards me and my opinions than you were towards Mr. Rosen.
James Out.
"But autism is a disorder that needs to be treated and cured if at all possible. And people who are trying to push autism as a civil rights movement are actively trying to stop this from happening. ... Children with autism frequently have trouble with even the most basic forms of communication and socialization and to label that just a "difference" is absurd."
Treated. I agree. Life should be made easier for us.
Trouble with communication is, IF NTs are the masters of it, why can't they use their genius level communication to educate us! Maybe we're not so easily overloaded, with the right chemical loophole. Maybe they aren't the masters of communication. Maybe we oughtta try.
Marc, Although The Daniel Jordan Fiddle Foundation focuses its attention on creating opportunities for adults on the spectrum to live, work and recreate in their communities, we are very much aware of what you wrote in terms of the "science." All that we do at DJF is based on the truth that we as a society must respect and honor all people and provide the necessary supports needed for each to live the best life possible. I would like to optimistically think that those dedicating their life's work to this field, would as a starting point, begin with that thought. Finally, for this entry, I do think that everyone should think long and hard as to how their presentation whether in the media or otherwise affects other people. We are all human and cannot be perfect, but we can surely do better.
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