Of course, many disagree with Ne'eman's assessment, and Kolb explains:
The autism spectrum itself, however, is a universe with multiple galaxies, including nonverbal toddlers who bite themselves and college grads who can't tell the differ-ence between sarcasm and seriousness. This complexity leads to passionate and conflicting viewpoints. Not everybody stands behind Ne'eman, and some adamantly op-pose his views. One major area of contention: scientific research, which includes the hunt for autism genes.The underlying problem, in my opinion, is that there is no such thing as "autism." Instead, there are multiple "autisms," each quite distinct. And there's no way to know which individual is likely to do well or poorly when he or she is diagnosed. Nor is there any way to know what type of treatment, or how much of it, will be necessary or helpful....scientists have found common gene variants that may account for up to 15 percent of all autism cases. This is big in a disorder that varies so enormously from one individual to the next. Environmental factors also play a role, but if scientists can test for specific genes—most of which have yet to be discovered—they may be able to intervene much sooner to help kids. One day they might even find a cure. This is exciting for parents who want to understand the roots of the disorder. Therapies—some helpful, some shams—vie for their attention and their pocketbooks, and they'd welcome better, more targeted treatments. But the new genetic advances concern Ne'eman. He doesn't believe autism can be, or should be, cured. His ultimate fear is this: a prenatal test for autism, leading to "eugenic elimination." If a test is developed one day, it will be used, he says. And that means people like him might cease to exist.
Strangely, though IQ does seem to matter when it comes to prognosis, it isn't a true predictor of outcome. In part, that's because typical IQ tests depend upon verbal communication - something that even very bright kids with autism may find challenging.
Until and unless it becomes possible to distinguish among autisms, the debate over neurodiversity will continue. Some parents and self-advocates will insist that autism is both a challenge and a gift. Others will argue that it's a scourge that should be eliminated from the world.
In my opinion, both are right.
I think most that are against the neurodiversity movement don’t understand it.
My son is severely autistic. He bites his hands, he’s nonverbal, he’s not potty trained. His ability to figure out how to get what he wants, how to get out of places he doesn’t want to be (he likes to explore) and his response to the spoken word when he’s focusing on the speaker (focus, is of course, hit or miss) tell us he’s fairly intelligent.
That said, he is very, very very much a challenge.
I support the neurodiversity movement. While I want my son to receive therapy and to be treated, I want it to be in a way that is humane, that considers his individual self. I want him to be the best he can be, just like I want for his more typical sisters (one is ADHD, though). I want the disabling symptoms treated though, not the autism itself. just like I wouldn’t want a medicine to take away my oldest’s creativity or her activity, just help her focus (we opted for Straterra for her adhd and she’s only been on meds recently – she’s almost 11).
I want Tristan to be treated like a human being. I don’t want people to expect me to hide away my little boy who enjoys being out so much. I want him to get all of the services he needs.
I’m lucky, in my boy is young still, and fairly good looking, so people are mostly nice to him. I worry about his future. Unfortunately, there are those that will hear what a debilitating disease autism is (even though it’s not) and say we shouldn’t waste money on these kids that will never amount to anything. I don’t want that. I want Tristan to have the best life that he can. I support Neurodiversity.
Additionally the ‘autism is bad, cure it’ leads research into getting rid of autism, which I doubt is possible as there is no one autism, when one therapy might have good results for different autisms and the only therapy with any sort of sound extensive scientific backing is ABA, which still only helps a percentage (it doesn’t work for many – my son seems to respond, but we can’t afford 40 hrs a week of it)
Sorry one last comment:
‘preventing’ autism, if we can even do that, as well does not help the many many many individuals that already have it.
And who gets to decide which person is a scourge exactly? The parents? Doctors? At what level is an autistic person an OK person to survive and at what level is s/he a scourge? How do we measure it? If an autistic person is born with an IQ of 69 are they a scourge? But if the IQ is 70 they’re good to go?
I’d like to ask anyone who has a low functioning autistic child to go have a look at them right now and then come back here and tell me if they would be happier that child didn’t exist.
I agree with Lisa the vast majority of the time- including today. I only nuance or add to her perspective.
There are plenty of apples and oranges on the autism spectrum, and few kumquats and tomatoes too. All are technically fruit, but the differences are so broad that comparisons fail… you would not cook an orange like you might a tomato! You might cook an apple, but not serve it on spaghetti. I doubt very much that anything environmental affects autism other than nurture.
I have to hide my diagnosis of Asperger’s from the public because of the lack of understanding of neurodiversity. I am lumped in with “Rain Main”, when in fact autism was just one of the symptoms of the real character’s defective corpus callosum, the main bundle of nerve fibers connecting the hemispheres of his brain. I am lumped in with people who used to be called “retarded”.
I engineer $100 million dollar projects and have basic skills in five languages, so I am hardly “retarded”, yet I concede there are social graces I just can’t master, like recognizing people or recognizing voices.
If the neurodiversity movement is successful, someday I would be able to tell people “I have Asperger’s”. and instead of them thinking “he must be retarded”, they might think, “remind me to never play trivial pursuit with him!”.
I am an individual with autism who longs for a cure. I think neurodiversity is nothing but a scam. Their claim that if society accommodates autism then no cure is needed is certainly not true. Autism is still a disorder and the problems will be there. No way society can accommodate kids who attack others or who make untowards sexual advances. There was a recent article about an autistic man hitting a baby. Why should this behavior be accepted.
ND offers no alternative to medical research to find a cure or prevention. It is not eliminating the person but only to help them. Also apparently some ND’s are pro-choice in regards to an abortion for a typical fetus as if the typical fetus has less right to live than one with down’s or autism. They value the fetuses disability over its humanity.
They are often cruel on the internet and attack people visciously who don’t agree with them and even go so far as to claim that persons wanting a cure for autism contribute to murder of autistic children. Even Neeman himself claimed that autism speaks was morally complicit with murder by some logical device i fail to understand.
I urge everyone interested in autism to just say no to neurodiversity
Jonathan I’m really saddened and disappointed to see you equating autism with physical and sexual abuse. There may well be instances of sexual and physical abuse from autistic people to others but are you seriously suggesting that it is these individuals autism that causes them to want to abuse others? Do you have any evidence to back that up? Do you feel that you, as an autistic man, are likely to physically or sexually abuse someone?
“Their claim that if society accommodates autism then no cure is needed is certainly not true. Autism is still a disorder and the problems will be there.”
You are conflating the whole of autism with separate issues that may or may not arise from being autistic. A claim that if society accommodates autism there would be necessity for a cure is definitely true. That does not mean that autism can also lead to problems that require help.
I understand that you are no fan of neurodiversity as a concept Jonathan but come on, lets stay within the bounds of reality shall we?
“Autism” as a term is used loosely to describe various neurological disorders. These disorders affect different in varying degrees of severity.
Most parents of severely autistic children would choose to help their child overcome their neurological disorders, to help them live as full and independent a life as possible. In saying this I recognize there are some parents of children with severe Autistic Disorder who subscribe to the “no cure for autism”, Neurodiversity ideology promoted by persons with Aspergers and higher functioning Autistic Disorder. I believe they are a minority, a misguided minority.
It is the legal and traditional role and responsibility of a parent, to help their child learn and develop fully. It is not the business of a stranger, particularly one who does not share the same condition to tell a parent they should refrain from helping their child through treatment and cure. Any attempt to do so is ill founded and will only lead to unnecessary conflict.
Navi can not know what the future holds in terms of possible cures and treatments and whether treatments that might help an autistic persons child or adult improve their abilities will be developed. There is just no way to know that. Many health conditions that today are treatable were once considered untreatable and incurable.
Kev, well Kev says he is the parent of a severely autistic child. If he chooses not to treat or cure his child should a cure or treatment become available that is his decision to make not mine. If he tried to tell me to not treat my child with ABA or to not have him cured should a cure become available I would tell him to take a long walk off a short pier. I am sure he would say the same to me if he refused a proven cure for his child. The authorities in his jurisdiction, however, might well intervene should a cure or proven treatment become available and be refused because of Kev’s ideological persuasion.
In the meantime I personally will exercise my own judgment about what is best for my son with Autistic Disorder and profound developmental delays. I will not seek counsel from Ari Ne’eman or any other adult with Aspergers Disorder or any high functioning adults with Autistic Disorder either. They do not share my son’s life realities and challenges.
Some parents may wish to relinquish their responsibilities as parents to an ideological movement of strangers who do not know their children. Not this Dad. Not now, not ever.
I think that there exists the perception that parents that pursue therapies/treatment for their children with autism do so because they are unable or unwilling to accept them as they are. That they want their children to be “normal”. That they feel their children are defective and their goal is to “fix” them. And I’m sure that there is a very small population out there for whom this may be true.
But for the majority of us, it is not about curing our kids because we want them to be normal or because we give a damn what anybody else thinks. For most of us, it’s about trying to help our children navigate a world that is so obviously painfully difficult for them. It’s about easing their struggles and alleviating the distress that they experience on a continual basis. It’s about trying to provide them with some measure of independence and human dignity.
The members of the autistic population that are vocal and advocate acceptance and neurodiversity do not represent everyone on the spectrum. Sadly, the ones that need the most help are the ones without a voice of their own. The ones like my son, who are not content and who are not satisfied with their circumstances.
Kev, I see you are totally misrepresenting what I said on leftbrain/right brian. I would leave a comment there, but registration has made that very difficult so i hope you will read it here. I should not even be dignifying your absurd lies about what I said with an answer but here goes.
I never equated autism with sexual abuse. I only said that in some instances some persons with autism have made untoward sexual advances towards others. In our AGUA support group we had to ask one member to only come if accompanied by an aide because because he would walk up to girls and start kissing them and touching them in an inappropriate manner, he chose not to return to our group at all.
I have seen another severely autistic person try to accost a job coach at a service facility that I was on the board of directors on some years ago. It does happen. I am not saying all persons with autism are like that but it does happen. If this people were not autistic they would not have done these things this is a safe bet. You can make mistruths and obsfuscuate the facts all you want. But autism is a horrific disorder that does cause these problems and that is an undeniable truth no matter how much denial ND’s including yourself want to engage in.
Jonathan – To misrepresent what one says is Kev’s MO. Better to to respond to him.
I think the two sides here do talk past each other quite a bit. Even the notion of a cure as used by here seems to really be discussing several things. Most of those who would want a cure would view successful help for the problems associated with autism as miraculous. Some of what the ND folks describe as a cure would be unlike anything science has done for a neurological disorder ever.
There’s also, I think, a sense in which the rhetoric on the sides of the divide hurts the cause of the other side. I need my school district to pay $1,000’s a year for an aide and a low student/teacher ratio for my child. The difficulties my son has justify that money. A person graduating high school needs someone to look past the oddity and toward their strengths.
Rhetoric about the difficulties associated with autism makes the hiring less likely.
I think there are likely 3 very different causes of all 3 major types of autism. I think that both Classical Autism (Low Functioning Autism) and Asperger’s Syndrome are almost certainly 100% caused by genetics. I think PDD-NOS is almost certainly 100% caused by something in the environment. But, labeling all three conditions as “Autism” just because all three conditions have similar symptoms I think would be like calling the symptoms of Allergies (cause by Pollen), Colds (caused by viruses), and Upper Respiratory Tract Infections( caused by Bacteria) as all one thing.
Thereofore, I don’t think the neurodiversity point of view is necessarily correct when someone is talking about Low Fuctioning “Classical” Autism but is probably correct when one talks about Asperger’s and High Fuctioning PDD-NOS Autism.
But, I definitely think the massive increase in the 1990’s of autism (mainly the PDD-NOS variant) is caused by a man-made environmental factor. I personally don’t think that “catalyst for autism” is MMR, Mercury, or any type of vaccine though. I think it’s something still unknown that started in the 1980’s-1990’s. It would have to be something that causes all the symptoms of PDD-NOS.
I think both sides can benefit from each other. Parents can learn from those who are adults, by asking how they came about with their own peace of mind.
Helping a child and offering them interventions by no means is a cure. By no means what any school offers will end up being a cure. I also don’t think people consider in depth what a cure would be. Best way to give an example is a parson who has been blind all their lives or most of it. They use other senses to determine things, maybe some what like some one with ASD. You could no easier throw that blind person into sight and expect them to function as they’ve always had sight than you can that person with ASD and expect them to be typical as if they always had been. Both would need additional therapies to deal with newly founded use of senses.
I have a child who was diagnosed infantile onset, severe ‘classic’ autism and he was surely severe with a capital S. Newer parents to such a diagnosis of course can not at all see into the future to know how that child will if at all progress, and if one watched enough media, all parents would be fearful. I decided a while ago to not think so much about a cure and futures, but focused more on that particular day. All kid progress, and like all kids, even kids with autism do as well. They don’t progress at the parents rate however and for many, that progression often isn’t fast enough. Not all kids diagnosed as my child was stays severe.
Many children have learning disabilities. Many can have behavioral issues, autism or not. I think prenatal tests always worry people in general, it’s a topic of interest to many to begin with. If such a test became available, I don’t think many would choose to abort too easily. And I’m not sure how to say this with a lot of correctness so here goes. The public needs to see the better side of autism, and the only ones showing the public this would be what is called the Neuro diversity community. Do you have to have ASD to be that different anyway? Not all with ASD are aggressive or sexually inappropriate. That is what the public is made to think and it continues here. I know typical kids who don’t have autism to be aggressive and sexually inappropriate. It’s so unfair to pin that solely on those children who have autism, and when a stranger comes upon my child to have that pre determined idea about autism. Another thing to consider is if I like it or not, that is the community where my child is going to fit in. My son just found out another boy in his class has autism, and I cant tell you how excited he was about that. I cant tell any enough the ease my child has socially when he’s not with typical peers, but with peers who also share his disability. The difference is amazing. If my child was the sole person with autism, he would be mighty lonely. Just as parents find it comforting to have other parents to talk with, consider that same thing for our kids.
I’m not too worried about a prenatal test, there isn’t one yet. If there ever is one, we still have to remember we can not make those choices for other parents. We cant now and we wont be able to then. But while we’re waiting, some of us can tell the world that “had I aborted my child who just turned 10, I would had never known his potential based on genetics. Autism or not, he had a right to live and I am here to tell you all I survived it, and my child has a pretty good childhood autism and all.”
But, I definitely think the massive increase in the 1990’s of autism (mainly the PDD-NOS variant) is caused by a man-made environmental factor…It would have to be something that causes all the symptoms of PDD-NOS.
Tom, do you think it is a coincidence that your supposed “man-made environmental factor” appeared just after PDD-NOS first appeared in the DSM?
I find it very ironic that Jonathan Mitchell feels misrepresented.
As we clearly have different ideas of what autism is, and what a cure for it would be, I’ve found the question of cure without further clarifications a distraction. Some view autism as something inherent to a person, others view autism as something inherently bad, and that any improvement, often including improvement quite unrelated to what that is conventionally associated with autism, means that the person is becoming “less autistic”.
As someone who regard himself as part of the neurodiversity community, but whose views might not be dominant within it, I reject the concept of becoming “less autistic” or “more autistic” – you are either autistic or not, which actually means very little by itself. What means something is more specific traits with practical implications – that might be handled, treated or taken advantage of. I also believe that constantly seeing diverging traits among the autistic people you encounter as a manifistation of autism would be bad, especially if you happen to have irrational feelings toward what you regard as autism. A fear I believe to be common among many of the neurodiversity community is that these irrational feelings will motivate an aggressive attitude toward autism while focus on what that is best for the individual will be lost.
great discussion! IMHO, one question that needs to be addressed is the distinction between autistic “symptoms” and autistic “traits.”
To me, a “symptom” is a problem – for the person experiencing it. A “trait” is a style of being.
Thus, a person with autism might experience a “symptom” of over-sensitivity to light and sound. Everyone might agree that it’d be great to NOT be oversensitive to light and sound, including the person with autism.
A “trait,” though, might be a preference for solitude or a fascination for a particular subject. Some might prefer that folks with autism be more gregarious or interested in a broader range of subjects. But those traits may be perfectly acceptable to the person in question.
To me, a big issue is the view among so many non-autistic folk (parents, teachers, therapists, researchers) that “typicalness” is a desired goal in and of itself. The more typically you think and behave, it seems, the less “disabled” you are.
This notion really, really bugs me!
Lisa
Some parents and self-advocates will insist that autism is both a challenge and a gift. Others will argue that it’s a scourge that should be eliminated from the world.
In my opinion, both are right.
So, we should eliminate a gift from the world? This makes no sense.
Autism is a challenge–often a very great challenge. Also, there are co-existing conditions that can be as great or greater a challenge than autism. But, “scourge”?
Sullivan:
Scourge – from the Merriam Webster dictionary (meaning #3): a cause of wide or great affliction.
Yes, I think there are plenty of people who think of autism as a scourge. When those people are referring specifically to painful symptoms of autism such as self-injury, etc., I’d agree with them. When they’re referring to autism in a very general sense (autism is a devastating disorder blah blah) I’d disagree.
There are also plenty who think of autism as both a challenge and a gift. I agree with those people as well: autism IS always a challenge, and it is often IMHO a gift.
Lisa
I agree with the Neurodiversity movement, we in the Autism Spectrum have rights too!, Autism is not the end of all things folks! I should I have dx’d Asperger’s with it running in my family as my nephews have it also,(1 has low to med verb classic Autism while his brother has Asperger’s like me) The bigots are afraid because we can say what Autism is really like, not these parents who refuse to listen to reason & turn there back in favour of 1 scare tactic by celebs, namely Jenny McCarthy & friends. I applaud those on the Spectrum who can stand up against the bigoted anti Autism & Anti Neurodiverse bigots,(aka the Archie Bunkers of our time)
through my life I have ups & downs with being Autistic however I have learned to accept it & if life gives you lemons you make lemonaide!, because if they are bigoted to us & lot of them are bigoted to Gays, & such already anyway..embrace & accept Autism, don’t fear it!
@ Harold
Just wanted to mention that all the people I know who do “biomedical” interventions (special diets, chelation, B12 injections, etc.) have children with Asperger’s Syndrome. This means their kids are verbal, have normal-to-high IQs, and are in mainstream classrooms in regular public schools. I guess I understand parents wanting to try anything and everything (within reason) for a child who has major physical, emotional, and educational challenges, but what do you make of the parents of “high-functioning” kids trying for a “miracle cure”? If your son had Asperger’s Syndrome–no biting, no diapers, no head-banging, straight As in school–would you chelate him?
“But, I definitely think the massive increase in the 1990’s of autism (mainly the PDD-NOS variant) is caused by a man-made environmental factor…It would have to be something that causes all the symptoms of PDD-NOS.
Tom, do you think it is a coincidence that your supposed “man-made environmental factor” appeared just after PDD-NOS first appeared in the DSM?”
Actually, I don’t think it’s a coincincidence. I think it’s likely that the DSM was influenced by the increasing numbers of ADHD in the 1970’s and 1980’s. I think the increasing number of ADHD in the 1970’s-1980’s is simply that we went from giving 1.5 million kids tonsillectomies per year in the 1950’s to 250,000 kids per year by the 1986. Everyone know sleep problems are a comorbidity with both autism and ADHD. That’s also why we have a huge increase in adult obstructive sleep apnea.
As for the catalyst in the 1990’s that occurred coincidentally in the 1990’s along with the DSM change I suppose it would have to be something that causes similar symptoms as autism. But, I do think there is a real increase in PDD-NOS in the 1990’s and that it was caused by an environmental factor but I don’t think it’s MMR, Vaccine, or Mercury. It could be anything – a drug, something in the air, a different way of handling infants, etc. The other thing is that the increase in PDD-NOS seems to have begun mainly in infants of a higher socio-economic class. Back in the 1880’s all the best doctors covered themselves up to their arms in blood because they thought it amde them look more professional. Poor womens kids started living because they could only afford uneducated midwives whereas rich peoples kids died because they took them to the blood covered doctors covered in germs. Just a thought.
The thing with PDD-NOS, Autism and Asperger’s, is there is no real defining test. One doc will say PDD-NOS, which means they do not fit any where else on the spectrum, and another doc may say autism. One doc may not look into the whole child’s history to know the child had much intervention and was once non verbal meaning they couldn’t be Asperger’s, but that’s what they will diagnose anyway. Many have disagreed with the PDD-NOS for years to begin with.
It shouldn’t make a difference which diagnosis a person/ child has, it’s still part of that spectrum and many all have much of the same symptoms and difficulties in each.
Zoey claims that people on the “autism spectrum” have rights too. So true, if only she would respect the rights of others on the autism spectrum.
Zoey’s rights do not extend to interfering with the rights of autistic children to treatment. Children with autistic disorder have the right to treatment, and if a cure for their disorder becomes available, cure for their neurological disorder. That right for children, particularly children like my son with autistic disorder and profound developmental delays, is exercised through their parents, not by Zoey or any other stranger with a similar diagnosis.
That right to available treatment is recognized in the 1958 UN Declaration of the Rights of the Child which also recognizes the role of parents in ensuring the exercise of that right. Most legal systems recognize that a child’s rights are exercised by their parents, or other recognized caregivers, not by strangers with an ideological agenda.
It is unfortunate that Zoey and other ND ideologues resort to such childish name calling. The real bigotry is practiced by Neurodiversity advocates who attempt to interfere with and suppress the UN recognized rights of children to treatment and the right and responsibility of parents to exercise that right on their childrens behalf.
No one should force Zoey to seek treatment or cure for her Aspergers Disorder. Nor has she indicated that anyone has made that attempt. She, and other ND ideologues should cease attempting to interfere with caring parents seeking to help their children to a better life. Unlike Zoey and many with Aspergers, many more severely affected by Autistic Disorder do suffer very serious self injury, risk of loss of life through failure to comprehend the risks of daily life such as automobile traffic and lives spent in high security group homes and institutions.
I live with these realities as the father of a 13 year old boy who, unlike Zoey, is severely autistic. I have lived in fear when he went missing across city streets on a busy Saturday afternoon. I have seen his self inflicted wrist bites. I have helped him every day. I know the realities of his future. I have visited group homes and institutions. I have been there for my son and will be there for my son unlike the ND ideologues like Zoey who would just use my son’s autistic disorder condition to advance their ideological agenda.
If a safe, effective cure for autistic disorder is found I would want that cure for my son. I would not try to impose a cure for Aspergers Disorder on Zoey. She, and other ND ideologues, should stop trying to impose their will on families of autistic children. By all means advance their interests but recognize that their interests are not unlimited, that their interests do not include a right to tell others they should not be cured or should not seek a cure for their children.
Respect for others is, at present, a missing ingredient in the Neurodiversity ideology.
I completely agree with your last comment that there are multiple levels of autism. I completely respect Ari’s position for the high functioning individuals w/ ASD that he represents. They are so fortunate that they are able to function in society and live independent lives. This is what I pray for my 3 ASD children who were more severe than Ari and his crew when they were first diagnosed. I had children who could not communicate. I honestly feel that my children do not have autism, but some medical condition that was caused by genetic mutations due to environmental factors. For now, we call it autism and we are treating their health issues with biomedical and dietary interventions with great success (we can not afford traditional therapy for our health insurance will not cover it – but they cover some of the biomed). Hopefully, years from now the medical establishment will figure this out and create new categories that will more accurately reflect their conditions.
It’s unfortunate that although many people have a certain role being part of the same autism community, that so many never listen to another’s point of view. Name calling comes in many forms. It’s sad that when people have made their own peace with this disorder that people can not accept that, and that peace is exactly what I hope for my own child. As a parent, that’s what I hope to learn to teach my child.
Most within the Neuro diversity community don’t often go into depth about their own progress from childhood into adulthood, and I might mention how Temple Grandin did not start out being “high functioning”. It’s also very hard to define just who’s struggle is worse than another’s no matter what the diagnosis is. The only difference might be is which end a person is on to decide whose ASD is worse or harder to deal with. Since non of us can observe each other or our kids, it’s almost impossible to understand that persons perspective, be it parent of a child or an adult with ASD. My child was not always verbal, and although he can only speak for himself be it he’s at young age, listening to him is also my job as a parent.
A cure would not erase everything. It would be impossible to erase the memories of having autism and the parts of it that so greatly effected their lives. I’m not sure any child would be able to mentally handle such a change if a cure is ever available, one would have to consider it wisely. I can see legal action against parents who refuse cancer treatment, which exactly is in the news in the state where I live. However “The authorities in his jurisdiction, however, might well intervene should a cure or proven treatment become available and be refused because of Kev’s ideological persuasion…” there is a large difference between some health issues and a force upon treatment or cure to those who decide not to and they wouldn’t need persuasion to make this choice. People attempt to persuade people all the time (I can name a few not of the ND community) but then that would mean families rely on others to make important choices for them and we then could assume people cant think for themselves to make those choices.
But we’re not talking about treatment and cures really, we’re talking about pre natal tests and the possibility of abortions and the ND community regardless have a valid point.
Sandy stated:
“there is a large difference between some health issues and a force upon treatment or cure to those who decide not to”
Apparently Sandy missed the point. I would personally not try to force Kev to seek a safe, proven effective autism cure for his child. The state in his jurisdiction may decide otherwise. Some states have done that in the best interests of the child where a parents refuses to obtain available treatment on ideological grounds.
It’s hard to use the “ideological grounds” as a bases when it’s hard to imagine any one therapy intervention for autism working for every one with autism, which would include a cure into that imagination, to even think some jurisdiction would force a thing. That whole idea to me is ideological. Kev is no more forcing Harold or me than we are of other’s.
Kev did have some good points regarding IQ and just who get’s to decide. When it comes to autism and ASD in general, depending on what doc you see depends on what diagnosis you end up with. Thinking in regards to a pre natal test, the question of who get’s to decide is a good one for depending on who you’d ask depends on the answer they’d give. Since no two people on the spectrum are alike and progress the same, that answer would be impossible to give in order for expecting parents to make a good choice, wouldn’t you think?
Zoey also had good points as well. No matter where on the spectrum a person may be, and since there is no cure, their diability effets them and the sigma of the public, which can be seen here. Their attempts to make the world more aware can only be a good thing, since no one has any idea if there will ever be a cure-option. There is prejudice no matter where you are on the spectrum, and that should change.
The problem with “curing” autism, is that, so much of the time, what they’re talking about is curing their (society’s) problem with us (autistics) by eliminating us from the gene pool. Killing us in utero doesn’t cure us, it kills us. And it’s no solution for those of us already alive who would like accommodations so we can contribute to society.
In addition, there is a tendency to concentrate on curing surface symptoms and ignoring the deeper differences. Those of us who can do the “social polite” then get ignored since we don’t act out and so don’t look disabled. And being ignored means we don’t get to contribute to society the way we could with accommodations. The squeaky wheel gets thrown out or behaviour-modified to stop squeaking, rather than gets given the oil it needs to function better.
I’m all in favour of helping autistics with the problems we have coping. If only there were more of that. But what Ari is talking about is the tendency of society to focus on us as a problem, rather than us as people with problems. If neurodiversity as a concept will help people see us as people, then good. If not, then what do we try next?
To echo and summarize what a few others have said:
* The neurodiversity movement is not against treatment or training for issues related to autism – which makes the idea we only represent “high functioning” autistics nonsensical. The types of treatments that are usually opposed are those with a high focus on normalization (as opposed to help), and snake-oil treatments like chelation.
* The genetic research currently being undertaken is unlikely to ever create an actual cure, as a genetic cure would require a level of technology only found in experimental science fiction. The much more likely goal of this research is a prenatal test – and given the negative stereotypes of autism out there, this would almost certainly result in the eugenic elimination of autistic people.
For a full list of one groups take on the goals of neurodiversity, have a look here. As you can see, one of the goals mentioned is an increase in funding for support services and ethical forms of treatment.
I think first of all the word “neurodiversity” is getting some very bad connotations, from rumors that everyone who supports “neurodiversity” is opposed to any form of treatment for autism, adhd, etc. for example occupational or speech therapy, or medication where it is proven effective and called for.
I support ‘neurodiversity’ as the concept comparable to “biodiversity”: life in many forms equally valid.
“Neurodiversity” to me does not mean never trying to change a person at all. Every single person regardless of their brain structure must adapt in certain ways to live in society. The idea of “neurodiversity” supports only that sometimes society must adapt too, such as accommodations for disabilities.
Neurodiversity does NOT mean allowing anyone to harm others or molest children! That is not allowable behavior from anyone, that should be obvious.
There is nothing about autism, ADHD, etc. that would specifically cause a person to molest a child. Just because some people in any given group do bad things, does not mean belonging to that group inherently means you’ll do bad things – if a white male molests a child, does that mean all white males have a terrible condition to be cured? No, that’s ridiculous – pedophilia is a SEPARATE CONDITION from being a WHITE MALE.
Fleecy – no one is saying that autism causes a person to be a pedophile! What Jonathan said was this:
“I never equated autism with sexual abuse. I only said that in some instances some persons with autism have made untoward sexual advances towards others.”
This is, of course, something that happens fairly often – because it can be very tough to know, based on nonverbal signals, what is an acceptable advance.
I think Jonathan’s point was the same as yours: that it is a good and helpful thing to provide people with autism with direct instruction and guidance so that they don’t mistakenly make an inappropriate sexual advance.
Lisa
jonathan says.If this(these)people were not autistic they would not have done these things this is a safe bet.
And jonathan says this…No way society can accommodate kids who attack others or who make untowards sexual advances. There was a recent article about an autistic man hitting a baby. Why should this behavior be accepted?
It sounds like he IS blaming autism for their actions to me lisa. Almost as if he means non-autistics would never do these things.
I like what paul wrote.
Get it right people. Understand what The neurodiversity movement is before you make a decision about whether or not is should exist.
I feel it neccesary to play “devil’s advocate” on this issue.
Where Neurodiversity does indeed content to valid points, it also has flaws. As well, the opposing views are not flawless themselves.
The aims of Neurodiversity can sometimes clash with more moderate(in philosophy) autistics, and most often, the least(in philosophy) moderate autistics. Some autistics have managed to learn how to cope, are able to live their own lives and think that the focus should be on education and non-harmful therapies to teach autistics the unwritten rules of society, and how to fit in while still being an individual. Some autistics feel that they deserve unearned respect. Some go even farther, and purport to be superior. Most of the bad apples wash out, or get barred from the blog circles and forums.
Neurodiversity is a positive organization, with a positive message, but it needs to be more flexible, and more accomadating to autistics who would like a cure.
I have been on a forum where someone who wanted to be cured, because they were unable to live their life, who were summarily banned after dozens of posts mocking and outright accusing them of wanting to murder unborn children.
I have seen a fanatic with Aspergers harass and abuse autistics for not agreeing with him. He would take thier comments, edit them, and place them on a private website so that he could make strawmen arguments of them.
There are good people who want to cure autism, and bad people who don’t want to cure autism, but in the end, it will require a mature society to respect the wishes of those with autism who do not wish to be cured, when the cure comes.
Incredible scientists, engineers, and others have been born with autism, who have made incredible changes to our everyday lives that we are unaware of. Songwriters, musicians, authors, economists, magicians, atheletes, painters, the list goes on. To eliminate autism would be foolish, but to force all those with it to remain so against their wishes? Either way, it is a tragedy.
The hopes of most autistics, I believe, rely on the actions of a mature society, should a cure be invented. And all should remember the lessons taught by the Nazis in their attempt to create a master race.
Neurodiversity is pure propaganda with a little bit of truth mixed in with mostly dishonest information to deflect blame from the vaccine makers for causing the autism epidemic.
If you read something from ND that sounds legitimate. read between the lines to find the lies. They’re always there.
I am a 50 year old Aspie and have made my special interest in understanding all there is to know about Autism. I am a Psychologist and a leader in the Autism field in the state of Minesota.
I can tell you without any equivacation that there is in fact a spectrum in Autism and as such where one lands on that spectrum dictates how one fields about the need for a cure. But when looks closer there is a definable gift that we all have by having Autism. As such we have a difference that enhances the world and advances the cognitive consciousness of humanity.
We do not need this mindless argument about Neurodiversity. It is a reality and we need to all be about the business of advancing the awareness of Autism so that everybody knows about our gifts and talents not as individuals who are generally regarded as wierdos that just does’nt get it.
There are unfortunately a lot of pricks at quite a few internet fora, which also happens to be one of the most important venues for the autistic community. It’s easy to find some distasteful behavior there and apply it to your understanding of neurodiversity.
My perspective: I am aspie. I believe in helping people deal with the world. I don’t believe in a cure. I also believe that the theories involving mercury or vaccine causality are crap. (Not to mention dangerous – and misleading.)
I believe that – although families mean well and I am by no means saying their voices should be heard – people with autism and other associated disorders have more right to speak on behalf of autism issues than NT parents do.
My perspective: I am aspie. I believe in helping people deal with the world. I don’t believe in a cure. I also believe that the theories involving mercury or vaccine causality are crap. (Not to mention dangerous – and misleading.)
I believe that – although families mean well and I am by no means saying their voices should be heard – people with autism and other associated disorders have more right to speak on behalf of autism issues than NT parents do.
To comment on the “spectrum”: there was a time when I was more uncertain — which came perhaps from my being on the “higher” end. I put higher in quotes here because there are others for whom the terms high and low functioning are offensive. Needless to say, this uncertainty was significantly lessened when once I met people on every part of the so called spectrum whose view is much the same as what I say here.
I am a writer. I think in many ways being Aspergian makes me a better writer. Better with words, better with details, and with that perspective that might not happen otherwise. I love the happy feeling I get when engaged in something that really grabs my interest. To sacrifice either of these would be to sacrifice who I am — not to mention it would make my life entirely dull.
I honestly don’t believe that anyone who wants me to change in order to have me fit some ideal from a flawed society is worth my attention.
Lastly, for these reasons — if there were ever a cure, I would most certainly refuse it. There are no “normal” people trapped in some “autistic web”. Force a cure, it does not mean the autism will disappear. It means the people will.
I am an individual with autism who longs for a cure.
Listen, if you’d just have something for the sensory issues, I wouldn’t be wanting a cure if I were you!
I think neurodiversity is nothing but a scam.
Their claim that if society accommodates autism then no cure is needed is certainly not true. Autism is still a disorder and the problems will be there.
One problem: Sensory issues.
No way society can accommodate kids who attack others or who make untowards sexual advances.
KIDS! Baka! You ought to know better than anything that they need a better teacher. Preferably one of us!
There was a recent article about an autistic man hitting a baby. Why should this behavior be accepted.
Because the rest of us aren’t necessarily him. HE isn’t the point. It shouldn’t be accepted from him. But not all Autistics act that way.
ND offers no alternative to medical research to find a cure or prevention.
I am a Neurodiversity activist. I offer an alternative. ACCEPT US, SO THAT WE CAN HELP YOUR CHILDREN.
It is not eliminating the person but only to help them.
It will destroy society’s potential future heroes, to take away the special interests and the single mindedness.
Also apparently some ND’s are pro-choice in regards to an abortion for a typical fetus as if the typical fetus has less right to live than one with down’s or autism. They value the fetuses disability over its humanity.
I think all forms of abortion are stupid, and ought to be stamped out. Autism is just as disabling as a Non-Autistic state.
They are often cruel on the internet and attack people viciously who don’t agree with them and even go so far as to claim that persons wanting a cure for autism contribute to murder of autistic children. Even Neeman himself claimed that autism speaks was morally complicit with murder by some logical device i fail to understand.
Well, it’s not as though we can regenerate neurons. Any slip in surgery would be irreparable. They want to kill our talents, because too much processing is indeed bad for a person.
I urge everyone interested in autism to just say no to neurodiversity.
Neurodiversity is the best chance I have of helping those less fortunate than myself. Because, if I am not accepted, then I will not be heard. Any hope I have to offer will be rejected. People with a lower IQ will continue to languish. And I will go unfulfilled.
Someone talked about neurodiversity urging society to give autistics “unearned respect” or even to be treated as superior….what a load of crap!
That part of ND are a splinter group; they aren’t really ND because they don’t like diversity (because they want everyone to be like them or they want the world to only recognise the talents of autistics).
When I say “we want respect”, I just mean that I want to be treated with the same respect you would give any other person (and if you don’t give any other person respect, fine- at least you didn’t discriminate). Not to mention that it would be nice for people to respect the rights of autistics (which means that I am against inhibiting research because it’s our own responsibility to use that information wisely).
We should be treating EVERYONE with some degree of respect and being generally courteous. I am no better than other people on the grounds that I have asperger’s/support neurodiversity.
Utter, Utter rubbish!
I agree with the above post in that certainly there is no reason for either side to view themselves as “superior”. In fact, for anyone to assert their own superiority over others is the surest way to LOSE my respect!
I tend to take a dim view of all minority groups which claim superiority over the majority as much as the reverse. But as stated, this makes up only a small percentage of those who believe in neurodiversity.
To comment also on Sudaku’s words:
Perhaps indeed it might not be a bad idea to focus on assisting people with those things that trouble them, and educating people too, rather than to focus on eliminating autism altogether.
To develop better coping mechanisms which would for example alleviate a person’s anxiety or stop him / her from causing harm to self or others doesn’t equate to a cure. The former would be good. The latter would be questionable.
For others in society to learn acceptance (not “tolerance” — ACCEPTANCE) and for future autistic / aspie kids to have self acceptance is also a better goal in my view and something with which the autistic community and neurodiversity movement etc can be invaluable.
I tend to take not a militaristic view to such issues although that does not cancel out the strength of my personal feelings on the subject. It was said by somebody, somewhere – I’m paraphrasing here — “if someone were to wave a magic wand and make (an autistic kid) not autistic any more, then as likely as not that child would disappear.”
In spite of what has been said by previous posters — I still do not feel that I would ever be willing to take away something which is so central to my being.
ps. It’s kind of late at night here so I’m hoping that I was making some sense.
As an adult who has battled autism since my childhood with afair degree of success, I am deeply offended by several comments suggesting that autistic children are more likely do become involved in sex crimes. I have endured enough misunderstanding due to my disability. I lost a large part of my childhood as aresult of my autism. Breaking into normal social life was difficult. I perservered hard. I had a lot of discouragements along the way. I must admit that I unintentionally caused offence to a number of people along the way by my lack of social skills and my eccentricity. I realize too that some people were afraid of me. To compound matters, I was sexually abused in ahospital I was sent to to help me with my mental condition at age 7. In no way whatsoever has that background caused me to want to commit some of the heinous acts which a few of your comments suggest. Would those responsible please do the decent thing and apologise for your comments. Don’t excuse them by quoting “statistics” .
I agree and disagree with curing autism, adhd, and other things.
I have add so badly Im like the reverse of aspergers. I crave spontaneity just as much as someone with aspergers craves routine and have as much trouble remembering names(details) and paying attention to conversations as aspies do with understanding people’s emotions. As opposed to being literal I tend to be extremely vague and metaphorical to the point where I confuse people. It’s caused me just as much trouble socializing as someone with aspergers. I didn’t even know til college & for a long time had low self-esteem and no friends. Then I learned to just be myself & got lots of friends. Thats really what it comes down to. I even know a guy with aspergers who has more friends than me but is way weirder than me. Hes just who he is and people like him.
Anyone who says “don’t cure any of it” or “cure all of it” isnt understanding concepts right.
Autism, ADHD, or any mental disorder is not concrete. You cant hold it in your hands. Its a human invented concept to explain real phenomenon. That means it can be divided into smaller concepts indefinitely & even infinitely.
Evolution: if every change in genetics was completely positive or negative we would’ve rapidly reached perfection. The reason we dont is because most changes are bothit t, akes time for new genes to come to correct the deficit but keep the gifts. The gene continues to that point because even if it generally is reproductively bad there are situations where it’s good .
So if science can find a way to preserve my creativity but get me better at paying attention to details when I have to Id take that. But Id have to be convinced first.
In a society where my cognitive type is average I realize neurotypicals would either be considered overfocused ADHD or even Aspergers. It all has to do with how information is presented.