Saturday, May 16, 2009

Ari nee'man newsweek article out

Well, the newsweek article about Ari Nee'man that i warned everyone about is now out. It was just as I suspected. It starts off with a typical yellow journalism headline Erasing Autism
Scientists are closing in on the genes linked to autism. So why is Ari Ne'eman so worried? in spite of the fact that this has nothing to do with the gist of the article. The article quotes the questionable genetic research that found a genetic variant that occurred in both autism and in the general population, even though it was a variant that autistic people had more in common. It was not likely to be the major breakthrough in genetic research that the media ballyhooed it to be. Certainly there is no genetic test in the foreseeable future that will allow people to abort autistic fetuses. Certainly the comparison with Down's syndrome is not apt, as Down's syndrome is a very different type of disability than autism, with some Down's persons having much shorter life expectancies and a variety of health problems and congenital heart defects that can go with it. (though admittedly not all Down's persons).

Interestingly enough, the article describes Nee'man as a master networker in spite of the fact that one of the cardinal symptoms of ASD's is an impaired ability to relate to people.

I was also curious about the qualitative aspects of Nee'man's disorder as compared to mine and others who are on the spectrum. The article describes Ari at 2-1/2 in a dinosaur museum exhibit announcing, "that's a pterodactyl" At 2-1/2 I could hardly speak at all let alone say something this sophisticated. According to my parents and psychoanalyst I did not recover my speech until I was about four years old. So it would seem Nee'man never had a speech delay and at age 6 based on the criteria that was in existence in those days it is unlikely Nee'man would have been able to get any sort of ASD diagnosis. Therefore, the fact that he can represent autistic people is questionable.

The article goes on to state that autism is not a medical mystery to be solved. So basically in effect they are saying no medical research should be done, even though this is the best hope for future generations of children who are sick or who may be born who become sick, though it may not offer anything that can be of tangible help in the foreseeable future. But we have to think about the future and hope that someday medical research can be done that will enable children on the spectrum to live better lives.

Nee'man is quoted in the article:

and he is pushing to make this happen for everyone on the spectrum. They should also be listened to. "We're having a nation-al conversation about autism without the voices of people who should be at the center of that conversation," he says.

So here we have an example of what blogger Harold Doherty terms "the royal we". Though Nee'man attempts to speak for all autistics. He does not speak for me. Someone who actually had a speech delay at age 2-1/2. Certainly he does not speak for Conor Doherty, nor other autistics far more severe than even Harold Doherty's son such as Sam Best or John Belmonte who can't even speak and aren't even capable of refuting Nee'man's nonsense. What is even stranger is that Nee'man is implying that he is not given a voice, even though the federal government allows Nee'man to illegally present his agenda before the interagency autism coordinating committee which grew out of the combating autism act which Nee'man and his friends fought tooth and nail when congress was debating its passage.

The article quotes Nee'man as not being opposed to genetic research outright, even though ASAN's webpage has called for a moratorium on all genetic research in autism.

The article then ends with a plug for the horrific no myths video that for some reason that is beyond my comprehension the Dan Moreno foundation financed.

On a more positive note, even though Nee'man stated that the conversation is happening without us. He did not say that most autistics don't want to be cured. So the article was not quite as bad as I imagined it would be. I have already written a letter to newsweek I am not sure it is worth writing another one to them. The ND's of course will have a field day with this article and will plug it as giving some credibility to their agenda.

One final thing I want to comment on is when I complained about the lack of equal time for people such as Jake Crosby, and myself who disagree with ASAN and wish there could be a cure for autism is the absurdity of the ND response. Some persons claimed that because Jenny McCarthy got exposure on Larry King and Ophrah, the NDs should get equal time and compared our complaints to that. However, there is one big difference. Jenny McCarthy is not autistic. She has not suffered first hand from this disorder day to day for most of her life the way those of us who on the spectrum who disagree with ASAN have. She is about 37 years old and autism was certainly an abstraction to Ms. McCarthy for the first 30 years of her life. Perhaps some day we will be able to have our say. I certainly hope so.

46 comments:

Roger Kulp said...

Thank you for one of the few voices of reason and sanity on the web about autism.Only another adult who has made some partial recovery from a more severe form of autism,can know how true what you say is.

Like you,I was barely verbal as a child,had profound developmental delays,learning disabilities,and spent much of my school years in special ed.Social promotion,and mainstreaming were the fads when I was in school.Perhaps it was this way for you too.This meant autistic kids were tossed in with everybody else,without any real help or therapy.

I have struggled my whole life with issues like elopement,and head banging.I have faced a lifelong cycle of regression and recovery.

Many autistics,like myself,were not really able to communicate well ,until we got our first computer.
I would like to thank you for stating things much better than I could.I am glad I am not the only autistic out there,who neither sides with the Ari Ne'mans,or Jenny McCarthys of this world.

Neither of the views these two people espouse truly represent autism.There needs to be another group of autistics working towards a better way for all who truly are on the spectrum.

One more thing,the Down Syndrome comparison is an apt one for certain subgroups of autism,like those with mitochondrial disease.

Marius Filip said...

I've read the article about Ari Ne'eman and was outraged by the last statements "Our futures have not been stolen. Our lives are not tragedies."

How can he speak like that when the lives of so many low functional autistics, drowned in severe behavioral problems and/or mental retardation, HAVE been stolen by autism?

By his statements Ari Ne'eman proves nothing but his enormous insensitivity towards the people the hardest hit by the very same disorder that he claims to share with them.

Also, the stress on eugenics is laughable. It is simply a tactic to discredit any effort towards a cure.

Stephanie Lynn Keil said...

"Ne'eman is a master networker, a guy you'd think was born in a campaign office and bred in the halls of the Capitol. He's fluent in policy-speak and interacts seamlessly with high-level officials (he's just had lunch with the acting vice chair of the Equal Employment Opportunity Commission) and inquisitive reporters alike. He's formal but sociable and has a well-timed sense of humor."

Are you kidding me?

How can this guy possibly have ANY kind of ASD, even Asperger's?

Jamie's Girl said...

He's the 'fast food' version of a cure for Autism. It doesn't work. My son may have learned to talk, but neurologically, his neurotransmitters still don't work right.

jonathan said...

That's a good point, Stephanie! I really don't know how he could continue to be diagnosed as having AS.

Foresam said...

Jonathan,
Nice post!

It's curious that none of Jenny's followers bother to oppose Ne'eman. If Paul Offit was saying these things, they'd be all over him.

Maybe Jenny isn't smart enough to understand propaganda,,, or maybe she and Ne'eman are on the same side.

lurker said...

I'm disgusted that the article rubs it in people's faces just how well Ari is doing, having people stand in awe of him. At least it didn't ignore that some people are against him. I wish Ne'eman had to address contrary views to his own in this article.

Greg Reich said...

I'm not defending Nee'man's position or supporting it, but I do want to say that it is very possible that Nee'man had a speech delay--just not in the same way you did. My daughter is considered a person with a speech delay, but she could name every instrument in the orchestra, say every letter of the alphabet, and count to twenty-five when she was two and a half. Why do they consider her speech delayed? Because my daughter, to this day, cannot have a conversation with people (she's five now). She has a huge vocabulary, but can't have a back-and-forth, meaningful exchange in complete sentences. She can communicate her needs most of the time, but it's often in one word or scripted speech, and she usually gives one-word answers to questions. Ari may very well have had the same issues if he considered himself speech-delayed.

Criticizing Nee'man's position on issues relating to autism is healthy, but not giving him the benefit of the doubt on his autism is another matter.

I disagree with Nee'man on a lot of points. I think it would be great if we knew if a child had a high probability of having autism before birth; it would increase the chances of early intervention, which has been the most effective way to overcome the learning issues and social problems that go along with autism. The problem is that genetic testing in the womb runs risks. I remember talking about those risks while my wife was pregnant, and if I had to do it again, I wouldn't anyway. After birth? Sure.

Stephanie Lynn Keil said...

I just think we need to seperate AUTISM (Autistic Disorder) from ASPERGER'S.

Many people receive the "autism" diagnosis because they will only qualify for services with that label. Many places do not cover a PDD-NOS or Asperger's label. So, a child or person could very well not have autism but have the label for services.

It's like a school counselor telling parents who have a child that is 25% Hispanic to make sure to put that on all forms for school so that he can get more money for college (us pure white people get nothing in this regard).

Tony Atwood has stated that he's diagnosed plenty of people with AS who have had speech delays.

I believe that AS and Autism are seperate disorders. I have HFA: severe autism with a high IQ, classic/Kanner's autism with a high IQ, but I am NOTHING like people with AS.

I am sick of people saying that the only difference between AS and HFA is a speech delay because it ISN'T!

A child will get a diagnosis of autism if they have a very mild speech delay but are AS in every other way; that child should be AS not "AUTISTIC" but won't get any services unless they have the autism label.

Thus, these people, who most likely actually have AS, get to speak for people with severe autism.

SM69 said...

In my opinion what Nee'man says is totally valid, relevant and justified for people with Asperger who are doing very well as he does. I have been involved in supporting biomedically Asperger adolescents and some have responded very well and fast to the intervention proposed, to the point that now you cannot tell without close scrutiny they were on the spectrum. Ari’s story as told in the article is possible; he could have much clearer signs of autism as a child and now is doing rather well. Does that entitle him to speak for everyone on the spectrum as if they did not have much more severe needs? No, I don’t think so, but what he says is correct for him and people like him. So where does it brings us? Exactly to the point I was raising earlier, we need to know what proportion of ASD people are like him, we need to define much more clearly this heterogeneity and find ways to assign more informative diagnosis. That is essential to prevent over simplification and that is essential to provide the help that is needed for everyone. What Ari needs is indeed help to be accepted for his minor difference, what a non verbal child self-injuring, suffering for bowel problem needs is very different. To accept the sate of existence of such child is not just unethical, it is criminal. Many children today have unrecognized medical issues that do affect their development and behaviour. It is a shame that this knowledge was kept very low key in the article.

K said...

"A child will get a diagnosis of autism if they have a very mild speech delay but are AS in every other way; that child should be AS not "AUTISTIC" but won't get any services unless they have the autism label."

Incorrect in my son's case. Based on Jonathan's criteria, being able to label or speak of complex subjects, my son has AS, but according to the school system and various clinicians, he has autistic disorder. He is the most severe in his autism only classroom having been labeled "robustly" autistic at the age of 26 months. He is much more severe than anyone commenting here. There are too many online autistics without children, including ND's and anti-ND's that really shouldn't make sweeping statements about children because when you do, you really reveal how little you know how autism presents itself in children.

Stephanie Lynn Keil said...

I was severely autistic as a child. Spent years in hospitals and institutions. I also have a cousion with severe autism who cannot communicate. I know how it presents in children.

What I meant is that a young child who is very high functioning but who had a mild speech delay will get an autism diagnosis even though they really present more like an Asperger's.

I rarely spoke as a child and was considered to be mildly retarded because I rarely spoke.

I wasn't able to speak about complex subjetcs; I spent my time flipping lightswitches and pacing back and forth in my room with my headphones on.

A person can be severely autistic when younger but than later become higher functioning, such as myself.

Autism is like that: it is a developmental disorder, so some have developmental "spurts," like I did.

At least your son can attend school. I don't know how old he is but I was in an institution at 11. So, to say that he is more "severe" than anyone here is probably inaccurate since he is much younger than everyone here. You don't know how he will be when he is older. I was told I would never graduate from high school and spend the rest of my life in an institution.

I get tired of people making sweeping statements about my autism since I have a high IQ.

How many times do I have to say that autism and IQ are not related?

farmwifetwo said...

K, a speech delay is when speech comes "normally" but behind. My eldest son's verbal diagnosis... the one one on paper is "mild Non-verbal learning disorder with a speech/language delay". It started at age 3 and now at age 9.5 except for difficulty with non-regular pass tense verbs and saying what he's thinking without thinking first... his speech is as normal as yours or mine.

His younger brother - severe, non-verbal PDD - only has mands/demands in 1 to 3 words and . This is not a delay... this is being Non-verbal and therefore meeting the speech/language criteria for autistic disorder or PDD. There is no recipricol conversation.

Stephanie, I admit I've used that "autism" diagnosis to get services for my eldest and don't regret it at all. When at 3 they diagnosed him with "speech and language delayed with global delays" and the school informed me "it's just a learning disability we don't have to do anything until Gr 3"... It took 18mths but the paper diagnosis is "A mild form of ASD". Sometimes, you have "label" to get services and to quote one of the professionals I've dealt with over the years "a label is ONLY to get services".... and I firmly believe that. At Gr 8 he's to be re-dx'd once more and re-psychometrically tested... We'll probably lose all the extra's... but I won't regret any decision to use ASD to get those I needed when he was younger.

Having a child on either end of the spectrum, I am firmly in the "HFA, or Aspies, especially those with jobs and families, do not speak for those who will never have those things". I am hoping that with the DSM V... my eldest son in 3yrs (gr 8)... is off the spectrum... It may make highschool a bit of a challenge BUT, his diagnosis, his difficulties, have nothing in common with his severe, non-verbal PDD younger brother.

S.

K said...

farmwifetwo,

If you don't count scripting, my son is non-verbal as well.

Stephanie, why did you speculate on your blog that some autistics, lower functioning, might like to live in institutions? Suggesting that makes me think you don't know the institutions I'm familiar with and why are you fixated on mentioning IQ all the time?

Roger Kulp said...

You know what just occurred to me ?Not just that Ari Ne'man,and the others in his video are so verbal, not just that he seems to have such incredible social skills,but that he,and everybody else in his video seem to have such an overblown sense of self importance,and egomania,the exact opposite of most of us with autism.

Stephanie,I think there are a lot of people who would like to see Asperger's declassified as autism. While I can understand sort of why it is,from a scientific standpoint,I can see why from a social standpoint it shouldn't be. It would be interesting to see how this would impact the autism epidemic numbers we hear so much about if this were to happen.The Ari Nee'man types might raise such a stink,that it would be fun to watch.

I am sure there are other pro cure autistics,who do not side with the antivaxers,but there is an idea I have seen only on the antivaccine blogs,that I think is a very good one.Which is,that we start a campaign to have autism declassified as a psychiatric disease,and reclassified as a medical disorder of the brain.

Marius Filip said...

I've sent my letter to Newsweek. If you can see the link, the English text is in the middle.

If the link does not appear, it's on my blog, the latest post.

jonathan said...

Hi Marius, I read what I think was the English translation of your letter (I can't read Romanian at all but I think it was the same letter). Excellent letter, excellent points. However, I would not hold my breath waiting for newsweek to reply or for them to allow us to tell our side of the story, particularly someone on the spectrum themselves who does not agree with Nee'man's assessment. However, I thank you very much for writing it.

SM69 said...

Roger you said: I think there are a lot of people who would like to see Asperger's declassified as autism. While I can understand sort of why it is, from a scientific standpoint,I can see why from a social standpoint it shouldn't be. It would be interesting to see how this would impact the autism epidemic numbers we hear so much about if this were to happen.


The recent study from Hertz-Picciotto and Delwiche in Epidemilogy 2009, that looked at the autism incidence in California did not take into account Asperger Syndrome and PDD-NOS. You might want to look at this paper which Jonathan discussed earlier this year.

Regarding language delay reported in the early years of individual with Asperger, I thought I should remind this paper that compares the ICD-10 defined AS rate to the rate defined in the same population from the Gillberg’s criteria for AS. (Gillberg's criteria of AS can easily be found on the web- Individuals with early communication difficulties are not excluded). Both Gillberg and Attwood agree on these AS criteria.


Autism, Vol. 4, No. 1, 11-28 (2000)
DOI: 10.1177/1362361300004001002
Comparison of ICD-10 and Gillberg’s Criteria for Asperger Syndrome


In this study, algorithms designed for the Diagnostic Interview for Social and Communication Disorders (DISCO) were used to compare the ICD-10 criteria for Asperger syndrome with those suggested by Gillberg. Two hundred children and adults were studied, all of whom met the ICD-10 criteria for childhood autism or atypical autism. Only three (1 percent) met criteria for ICD-10 Asperger syndrome. In contrast, 91 (45 percent) met criteria for Asperger syndrome defined by Gillberg, which more closely resemble Asperger’s own descriptions. Results showed that the discrepancy in diagnosis was due to the ICD-10 requirement for ‘normal’ development of cognitive skills, language, curiosity and self-help skills. When comparisons were based on Gillberg’s criteria only, results showed the participants diagnosed as having Asperger syndrome differed significantly from the rest on all but two of Gillberg’s criteria. However, all of these criteria could be found in some of those not diagnosed as having Asperger syndrome. The results emphasize the differences between the two diagnostic systems. They also question the value of defining a separate subgroup and suggest that a dimensional view of the autistic spectrum is more appropriate than a categorical approach.

Stephanie Lynn Keil said...

I say I have a high IQ because severe autism is usually associated with a low IQ. My "IQ" actually isn't high, it's avergae, but it's "high" in comparsion to 75% of the people with autism, so some studies say.

I enjoyed being in the nice institutions because I did the same thing everyday and I was away from other people. I was allowed to be left alone. There is an institution where I live that is very nice; they recently hosted the special Olympics on their grounds.

I was also in a horrible institution, a warehouse, that was simply a place to house people that had no where else to go.

I think people with severe, low-functioning autism would prefer to live in an institution because they enjoy doing the same thing everyday in the same place and they can be left alone.

Staff just need to be trained properly to treat severely autistic people as human beings as well.

Marius Filip said...

Jonathan

Thank you for appreciation.

The first part is an introduction to the rationale of writing this letter. The last part is the exact translation of the letter in Romanian.

I wrote the lengthy introduction because people here are very unaware of the Neurodiversity trend and they do not understand the far-reaching implications if the Neurodiversity doctrine becomes state policy in the United States or other Western nations - as Mr. Ne'eman and friends would like to be, I assume.

The fourth paragraph from the end of my introduction summarizes the idea like this: "Look what a victory of the Neurodiversity philosophy would bring: the funding for cure and prevention of autism will be ended, most likely ABA will be declared an abusive practice and it will be banned, the centers for autistic adults will be disbanded and the cruel reality of autism will be covered by the thick and stinking layer of political correctness in which the simple mention of the negative effects of this illness will be a crime and the mental retardation or the grave behavioral problems of severe autistics will be depicted as alternate forms of human consciousness - among other aberrations".

Unfortunately, I don't think people here realize what's really at stake. A woman commented to me that she doesn't believe Neurodiversity will ever gain any significant traction.

I wish from the bottom of my heart she's right.

Marius Filip said...

Stephanie

I think when Ari Ne'eman speaks of autism, he's referring to the whole spectrum.

According to some, the spectrum is a continuum with the Kanner autism at one end and Asperger's at the other, with PDD-NOS in the middle.

The division between these three regions is so blurry that it's truly hard to separate Kanner from PDD-NOS and PDD-NOS from Asperger's.

In this respect I "agree" with Ne'eman when he uses the "royal We" when referring to all the people in the spectrun, because what he has is a much milder form of what Ştefănel has (a 35 yo autistic from my country who's so severe that he's got the intelligence of a 3 yo - his case was published in the media during the autism awareness month).

Obviously, I reject that Ne'eman has any right to speak in the name of all the autistics because neither Ştefănel nor my son, along with many others, elected him to do so.

A common illness or characteristic does NOT create representative rights by themselves.

Ne'eman has the right to speak solely in his name and in the name of the people who explicitly delegated him to do it - autistic or not.

SM69 said...

Anyone has the right to talk about autism; there is no law that limits this expression. Whether what someone says is endorsed / believed by others is different. In my opinion views on autism should be knowledgeable (full depth of issues, incl. Science), balanced, non-biais (independent from main industries or gov. Policies), nuanced when relating to the whole spectrum or sufficiently specific when accurate for only a sub-group of people. Ari does not seem sufficiently nuanced, accurate or specific when talking about autism as a whole. Maybe he does not know that is the case? How many HFA/AS have I met who had never met a child of Kanner type autism? All.

Is the ND movement really going to affect progress in intervention? I REALLY doubt it. The potential benefit one can forsee with the myriads of good interventions available at the moment are so huge that they will continue to be used and developped. E.g. Enhancing vocalisation with computer based speech viewer, computer-assisted instruction, FastForWords, ACC, Neurofeedback, RDI, etc.

We need to develop clever systems, organizations, strenghten the law to provide suitable care and placements for adults; this will be done, patents will push this

Sorry I am typing with iPhone, there is a text below but I cannot see it so sorry for duplication; would ARi and ND people be opposed to these developments? I doubt it too.

Cure of autism at the moment occurs in perhaps 10% of the youngest kids treated fast and well with Biomed/ ABA. People will always argue they were not autistic in the first place. This is a fair question which I have addressed before, what is it then? Genetic reversal is not a reality at the moment and there is nothing to stop or promote as this is science fiction only.




Would ARi and ND people really be opposed

Ender said...

Can I just ask why weren't you complaining with McCarthy and her supporters were on The Doctors the other day noncontested? How about when she was in the exact same publication about a year ago. You say you want both voices to be heard, but you never seem to complain when it is just your side being heard.

Now we have people are your side not only bashing the people who disagree with you, but also bashing their parents. Where does it end? If some 14 year old comes out tomarrow and says "Hey, I want to be an aspie" do you bash him and his parents too? What do you expect Ari to do when this is your version of diplomacy.

The simple truth is the Jo(h)ns are not moving to remove asperger's and HFA from LFA because it would hurt both of their causes. You very rarely hear an high-functioning autistic or aspie saying "I desperately want to be cured" so Jon would suddenly find himself in a small minority in the community with his voice being drowned out by the likes of Ari, Alex Plank, and Luke Jackson. So much easier to argue for a cure when you can compare yourself tot he lowest functioning autistics.

For a very different reasons John Best and his like would hate to seperate them. 1/150 has a nice ring to it. It sounds like an epidemic, it sounds like its grown so fast (never mind the fact that Asperger's wasn't on the DSM-IV until the mid-90s, and wasn't well known to anyone, including most psychologists, until this decade). You drop the HFA/aspie kids, that wouldn't have been diagnosed say... 15 years ago, it is all of a sudden 1/500 or less... and then you have a huge problem.

Likewise Ari is helped by the 1/150 statistic. That is a significant portion of the population, and many of those kids are indeed hurt and abused at some point in their lives. You use that stat, and it brings more people to your cause.

In addition to this, resent moves by John Best, show to me that this is now personal. He attacks a mother, he accuses the opposition of all manor of atroicities, asks people to forceably cure the opposition and has posts like "Ask Newsweek to kill Ari" and you get a picture of what this has become to him. If they became different disorders, he couldn't attack Ari anymore as there would be no need.

Likewise, Ari on some level (note I am friends with the guy, so I won't talk too badly of him) also has taken this personally. I believe he feels much closer to autistics then people who don't have any sort of disorder, and I believe he is scared. Scared of what NTs might do to him. This will cause him to take thinks personally, just like it would any one of us.

The simple truth is neither side is looking for a peaceful end to this conflict. Both sides are looking to gain as many followers as possible, so they can fight it out, not on the streets but in the minds of the nation as a whole. Though this is the one solution I don't think has a chance of working, as without unity nothing happens except for endless gridlocks. Jenny McCarthy goes on some show, then Ari gets printed in some article, then Doug Flutie gets in some article, and Alex Plank gets on some show. Each gain followers, but it ends up with the public being split, and therefore the researchers, the doctors, the politicians, etc. are all split.

What I would like to see happen, which I know it never would, is to make it the choice of the autistic/aspie as much as possible. Split the diagnoses first off. Next, for low functioning kids, where a cure is neccessary to have any sort of life the parents can acheive it (if they so wish). For aspies/HFA kids wait until say the age of 10 to really try to cure the disorder (not just the symptoms... but then again I don't really agree with overmedicating our kids but this is another story entirely) and then only without the total approval of the kid in question (which is where it gets messy and might be better to wait until 18). I know I know this will never work, but this is what I would want to do.

jonathan said...

Ender your answer of the comparison of McCarthy versus Newman is not valid if you read my posts more carefully Jenny McCarthy is not an autistic person claiming to speak for all or most autistic people the way Nee'man is. We need someone who is actually on the spectrum who has autism with a speech delay at one point in their life as I had to refute Nee'man's nonsense. Nee'man's (and by extension neurodiversity's) argument is then that the parents are speaking for the autistics. But if we can get someone with autism such as myself, Roger Kulp, Jake Crosby or Stephanie Keil to refute what he says, then our arguments will ring more true because then we can prove that Ari's royal we has nothing to do with reality.

I would love it if asperger's were eliminated as a diagnostic category as well as some other forms of autism and the 1 in 150 prevalence number could drop to 1 in 500 or lower, regardless of its affect on fund raising.

I don't believe that Ari is taking anything that John Best says seriously and has refused to have any dialogue with him so far. I don't believe Ari is scared of what anyone would do. Best never threatened Ari, however he knew that if he worded his posts in a certain way that the ND's would misrepresent it, giving his voice strength. They played into his hands perfectly so they have no one to blame but themselves for the lies that they spread that Best actually threatened Ari.

Ender said...

Jon if you watched that show you would see it talked about autism and autistics as a whole. While yes, it did just so the most severe cases around it made them seem like they were the most average cases. Time and time again shows do that for ratings. She may not be speaking for all autistics, but everything she is on certainly is.

But how about DJ Saverse? On the most severe side of the specturm. Still doesn't speak except through a computer. And agrees with Ari for the most part... oh wait... thats bad for you isn't it. How about no one speaks for autism as a whole, Jenny McCarthy (and her shows) you and John Best included?

And it is weird that you are not the least bit worried about being a small minority. You do realize that most aspies and HFA kids and adults don't seem to want a cure, right?

And of course Best has threatened Ari, he just did it in the right way so he can't get in trouble. Basically he did the modern day equalivalent of telling Ari, "You better watch yourself." It is not a direct threat but when you see phrases like "kill Ari" and accusing Ari of all sorts of wrongs (sodomizing a little kid being one of the most popular) you can easily see how that could be threatening to someone.

jonathan said...

And it is weird that you are not the least bit worried about being a small minority. You do realize that most aspies and HFA kids and adults don't seem to want a cure, right?

No I am not worried. You have no proof that what you say is true. I don't believe the majority of the entire autistic spectrum has your position. The online polls provide no proof of this whatsoever. It is sort of like taking a poll in Wasilla, Alaska and claiming that 99.9% of Americans would vote for John McCain for president.

You and the rest of the NDs can lie about it until doomsday but John Best did not threaten Ari in anyway. Asking newsweek to kill the article but phrasing it as kill ari nee'man is not threatening him. John knew you would lie about it and help publicize his piece and you played into his hands perfectly.

I agree that stating that Ari has committed a crime for which he should be tried, convicted and executed is a bit over the top but it is certainly not threatening him.

The fact is there are pro-cure autistics besides myself and we should be able to tell our view as you and Ari and the others want to speak for us and use the royal we and make the nonsensical claims that "autistics don't want to be cured".

Ender said...

So where are all the high functioning autistics and aspies begging to be cured? I don't ever see them on any website, including this one. You could claim they are just not as vocal as those in the ND movement, but that leaves you with no proof whatsoever. Do you think a group called "High functioning autistics for a cure" would get anywhere near as many followers as AFF? I doubt it. Its not there isn't any autistics for a cure, but when you get to the high-functioning end of the spectrum, they are quite a minority, and you are essentially asking to join that end. And when did I say autistics don't want to be cured, I said high-functioning autistics, as a whole, don't want to be cured. Quite different language there, don't ya think?

And if he is not threatening him, why does he post his and his mothers address on a regular basis (as well as many other members of the NDs movements addresses). He is using intentional inflamatory terms to try to rile up people to take action into their own hands. As a people we can not and should not allow this, hate speech and inflamatory speech with intent to incite violence is not protected speech. If Ari was to get hurt tomarrow, he could sue John for A LOT of money.

And a whole 20 people read the comments to this blog, I really am not all that worried about commenting about John. He could have quite easily used the words "kill Ari's article" but he didn't. He said "kill Ari", which takes on a whole new outlook.

jonathan said...

maybe there are a lot of high functioning people who are for a cure, I don't know that they are, but I think one possibility is that they are frightened of the bullies and the hatemongers in the ND movement who would harass them, publish their mothers addresses or insult their mothers as has been the case of people doing to me. I do know of one pro-cure autistic who will not publicize his position for that reason. I don't know if there are others or how many but it is quite possible they are out there. Not many want the abuse hurled upon them the ND's have hurled upon me. Also Stephanie Keil won't publish some of her stuff because it is too controversial. Others could feel the same way. If John Best's speech is not allowed, we should not allow the bullyboy tactics and hate speech of the ND movement either.

Funny, I read the hating autism blog on a regular basis and I have never seen him publish Ari's address nor his mother's.

Ender said...

"This is Rina Ne'eman, a woman who appears to be the mother of Ari Ne'eman. Here's an IP address from East Brunswick, NJ where Ari Ne'eman comes from: mail.hebrewtrans.com
IP Address 75.146.196.17 [Label IP Address]
Country United States
Region New Jersey
City East Brunswick
ISP Comcast Business Communications
Returning Visits 0
Visit Length 2 hours 40 mins 22 secs"

I suppose it is just her ISP address but can you honestly tell me that the purpose of that is not to hurl insults. And the ND people have had abuse and threats hurled on them but they keep going on. Heck, John Best has even insulted Luke Jackson before, though I really don't get what he could have done to deserve it, so don't act like it is one side that is guilty of that. But seriously, start a group called Aspies for a Cure, and see if you can get near as many followers as AFF has.

Marius Filip said...

Ender

The "I don't want no cure" stuff is garbage. When you KNOW there is no reliable cure to autism, it is easy to sit there and scream "I don't want to be cured".

If a reliable and inexpensive cure were available I bet that 95% of the most vocal opponents of curing autism will CHOOSE it. Why? Because beyond that "brain change" crap, it is the only thing that makes sense.

I won't be surprised that even Ari Ne'eman would choose a cure and then rationalize that "actually, it was not a cure, it was an ... improvement" (he's a politician, isn't he?)

Think about that: Ari studies political sciences. Politics will be his future, his career.

According to his own testimony, he's got plenty of hindrances because of his autism (difficulty to look people in the eye, discomfort to contact people, discomfort to casual talk, he uses a tie as a calming device, and so on).

Now, let's say that he could take a pill or something and get rid of all these sensory disturbances, he could look people in the eye with no problem, he would be more comfortable with business suites and ties and so on.

This means that all the discomfort he has right now will be gone. Do you think he'll be such a fool to say NO to something like this? He'd still be the same Ari Ne'eman, but without all this burden. If you bet that he will say NO to comfort and easiness, I don't.

And look the things the other way. You say there are no Aspies who want a cure. OK, those people have a problem. But have you talked with a child who's been recovered to see what he has to say?

Such a Canadian child wanted to give his testimony before a court and the hordes of ND folks started to bark that he's been brainwashed by his parents.

I see: the ND folks are free people, free of any ideological rubbish. It was THAT child who was the immoral and brainwashed one. How interesting!

People who don't want a cure do not want it because they don't know any better, my friend. Because they have not been put through therapy and treated of all their problems in the first place and see how it is to be able to really communicate with people in the stead of hitting yourself in the head or talking senselessly and abundantly without noticing that no one pays attention anymore.

Show me a recovered autist who can now communicate properly and has lost virtually all his autistic traits and who still wants to go back to hand flapping, biting, head-banging and the myriad of sensory issues - and THEN come and say autistics don't want to be cured.

But you won't find ANY.

Ender said...

I love my obsessions! I love the ability to focus on an issue for hours and learn everything there is about it.

I love the ability to prove my professors wrong when they start talking about my obsessions (man did I ever educate them about autism/asperger's, it really is amazing how little special education teachers know about the issue).

I loved when I was in the second grade being better at basic math then anyone in the whole school, including the teachers.

I loved that I was ready for high school maths by 4th... or maybe 5th grade (granted, yes I hated that my teachers were too stupid to teach me them.)

I loved that when I started getting into football I had the ability to study up on the sport to be more knowledgeable then either of my parents (who had been watching it since they were 4).

I loved that after finishing my 7th grade peewee league my coach offered me a coaching spot on the team if I decided do that instead of playing the next year, because he recgonized that even without the talent I had more knowledge about the game then anyone else and I could pick up on those little trends that were killing us.

I love being able to pick up a new video game that I had never seen before but my brothers had played many times before... and crush them at it.

To me this is what autism is. I never met NTs that could do these sorts of things. Perhaps theres some out there, but being the best in your school at math when your in 2nd grade... or being offered a coaching position (even if it is just pee-wee leagues) before your in high-school... I just have never seen it. But here is my challenge to you, I know of at least two aspies who were published before the age of 13, I want you to show me one (not the 299 that it takes to overcome one aspie ratiowise) that was.

You know, I was never much of a head banger (my bro certainly was however, though then again he loved it) or much of a biter (chewed finger nails a lot, still do, but that seems like more of a minor hinderance to me, not to mention something that millions of NTs out there do). And handflapping, yea it makes you look weird to many, but to get rid of all my talents to get rid of handflapping... I don't think so.

Ender said...

BTW, the kindof cure talked about in this article that we are supposed to be discussing was abortion, I don't think there are many aspies out there who want to stop existing.

jonathan said...

Ender: Mary Shelly wrote Frankenstein at about age 15. The diaries of Anne Frank were written by the author at about age 12. The first of these has lived on memory for more than 100 years, the second one for more than 50 years. In another five years people are going to say, "who is Luke Jackson, never heard of him", his book probably did not sell more than a piddling few thousand copies if even that.

Also actress Ally Sheedy published a children's book when she was about 13. There are probably many other neurotypical authors who wrote books at young ages. I wrote part of a novel at age 14 at a time, when I had virtually no mainstream education.

There are probably plenty of NTs who have accomplished all that you claim you have and then some. If you are happy with your AS, fine, all the power to you. But that does not mean others including myself don't suffer from ASD's.

Marius Filip said...

OK, Ender, I'm in.

I was the best at math, not in my school, but in the whole county (which was nearly 1/40 of a nation of 20 million).

I liked to learn things that others didn't know. Do you know about Aromanian? I speak it fluently. It is an ancient Romanian dialect that 99% of Romanians don't even know it exists. For you, it's like learning some obscure English dialect from Cornwall.

I liked to argue with my teachers - especially my teacher of Economy in high-school - and prove them wrong.

I used to accumulate lots of information, like an ambulant encyclopedia, memorizing poems (including in Aromanian) and the like.

I have a very good sense of smell, much better than my wife. I used to detect dead mice in barns by smell - I did that because I really dislike certain bad odors.

And I used to bite my fingers - because I did not like dry skin on fingers.

And you know what? I am NOT autistic or an Aspie. Not by far.

Do you get the point? The things that you are so proud about are not necessarily autistic, my friend.

You simply embellish a disorder by assigning certain "good" peculiarities to it.

A disorder is something that goes wrong, pal, not that dummy "strenghts and weaknesses" that you hear so much from ND ideologues.

Autism does not bring strengths. The so called strengths, either you can find them in abundance in NTs or they are splinter skills which are quite worthless (reproducing a whole symphony upon the first hearing? who cares?).

Autism is hyper sensitivity, it is difficulty to communicate and many other bad things that I do not want to mention.

So, YOUR autism is baloney. Ask John Best or Harold Doherty about their sons to find out what the autism that you are praising so much truly is.

Ender said...

And I am just saying that the choice to cure yourself should be yours, and not anyone elses, and that most aspies/HFAs don't want a cure (LFA parents can choose to cure a kid with that). How can you argue with this?

Beyond that I believe Luke Jackson's book was a best seller over in England. I have never went to a Barnes and Noble/Border's that didn't have the book and I have never went to a library that didn't have at least one copy. Even my college library had it.

But beyond that can you name any authors in the past say 20 years who accomplished this feat, and make sure they were actually published. I would appreciate 298 of them (its only fair). I wrote a book when I was a kid too, doesn't mean it was published or publishable. (BTW you writting a novel without any mainstream education sortof proves my point.)

And I would never say that NTs can't do what I could do, but I would say they are rare. I mean when you become the smartest person in math (and one of the smartest in English, despite your dyslexia) in your school (of about 600-700) by the second grade, smarter even then all the 5th graders, and smarter then most of the teachers, and you have asperger's, it is hard to believe it is just coincidence.

When your football coach tells you that you are one of the most knowledgable people he has ever met regarding the game (a football coach who nearly made the NFL btw) when your in the 7th grade... its hard to believe your asperger's is just a coincidence.

I love my ability to preservate, and if your going to try telling me that my parents have the right to take it away from me... then I can safely say your dead wrong.

Ender said...

Wait, you did all that stuff, and presumably you have an autistic son (why else would you be here?) Your autistic too, even if your in denial.

And once again, I have said time and time again that you can cure your LFA kid and you will receive no arguement from me. What is so hard to understand about that? Your trying to incite an arguement where there doesn't need to be one. Let aspies and HFA kids decide on their cure themselves. If they aren't being brainwashed to believe in a cure, then they should be more then receptable to it right?

But lets not take my word on the talents portion of it, lets listen to Tony Attwood, the world's leader in knowledge about Asperger's syndrome:

"asperger's syndrome
From my clinical experience I consider that children and adults with Aspergers Syndrome have a different, not defective, way of thinking.

The person usually has a strong desire to seek knowledge, truth and perfection with a different set of priorities than would be expected with other people. There is also a different perception of situations and sensory experiences. The overriding priority may be to solve a problem rather than satisfy the social or emotional needs of others.

The person values being creative rather than co-operative.

The person with Aspergers syndrome may perceive errors that are not apparent to others, giving considerable attention to detail, rather than noticing the “big picture”.

The person is usually renowned for being direct, speaking their mind and being honest and determined and having a strong sense of social justice.

The person may actively seek and enjoy solitude, be a loyal friend and have a distinct sense of humour.

However, the person with Aspergers Syndrome can have difficulty with the management and expression of emotions.

Children and adults with Aspergers syndrome may have levels of anxiety, sadness or anger that indicate a secondary mood disorder. There may also be problems expressing the degree of love and affection expected by others. Fortunately, we now have successful psychological treatment programs to help manage and express emotions."

All I am asking is to let the aspies make the decision about their cure, and not their parents, not their teachers, not their psycatrists, not their doctor, not anyone else. If the choose it, so be it, if not, so be it again. Why do you have a problem with this?

Ender said...

P.S. Now lets listen to (then) 13 year old Luke Jackson describe it (who has a severely autistic brother):

"Hi, I'm Luke Jackson and I'm 14 years old. I am a completely "normal" kid, apart from the fact that I have Asperger's syndrome (AS), a "mild" form of Autism.

I was born with it, and it may have come from another family member (here I tend to look meaningfully at Mum) but I don't want to get into a discussion of genes and causes at the moment.

One unusual thing about me is that I have what some people would call a disability - but I call a gift - Asperger's Syndrome

Quote from Freaks, Geeks and Asperger's Syndrome - my book!
I am often asked what it's like living with AS. This is kind of a difficult question about something that you've had all your life.

It's like asking somebody what it's like to be human (unless they aren't human, in which case they probably wouldn't answer, at least not in any human language).

You don't know, because you've been like it all your life.

What is normal?

Before you all walk off dejectedly, what I can tell you is what it feels like to live my life.

I don't know what "normal" is, but I know that people like me are the minority, not the majority. So that, in our society, is what constitutes "abnormal" (rather insulting I would say!).


Jacqui Jackson has seven children - all four boys have a form of autism
Until I was about nine years old, I thought everybody else was weird. Maybe I was right!

Ever since I was - well, in fact, ever since I can remember - I've known that I was in someway different to everybody else.

In primary school, when everyone was playing "cops and robbers" and "soldiers", I always wanted to sit on the wall and read, or scrutinize a blade of grass or spin around in circles.

In secondary school, while everyone is standing around and performing their teenage rituals (what they are all about I really do not know!), I go to the computer room or the library and enjoy time alone or with the greatest love of my life - computers.

Bullying

Being different may not be a problem for me, or other kids like me, but it sure seems to cause problems for "normal" (ha!) kids. The result... bullying!

I think there is some amount of bullying going on at all times, in schools everywhere.

Some have it worse than others, but all have it. I definitely had it, and "it" was very painful at times.

Always remember that "different is cool!"

A lot of teachers and adults think it is "part of growing up", but I have written my books, talked at conferences and opened my life up on television just to let everyone know that people with autism in any shape or form are just as entitled to be themselves as anyone else in the world.

If others would take time to stop and get to know us then they would see that we have a lot to offer.

Yes, we may get angry and frustrated at the world (particularly our parents!), but that is a natural reaction to feeling like an outsider all of our lives and being misunderstood.

All in all, to all AS people and everyone reading this, always remember that "different is cool!"

Ender said...

P.S. How about you post an article entitled "John Best castrates children" http://www.baltimoresun.com/news/health/chi-autism-lupron-may21,0,7558758.story?track=rss (sounds like what he would be for whole heartedly, another cooky cure based on the mercury claim, hell $10 bucks say he is already thinking about trying it on Sam).

Marius Filip said...

Ender

I think we're coming to the root of the issue.

I do not have a problem with Aspies not wanting a cure. And I am sure neither Jonathan Mitchell, neither John Best, nor Harold L. Doherty do.

Aspies have normal intelligence, are responsible for themselves, can make a decision. If that's their decision, so be it!

I have problems with two completely different things:
1) with the denial that autism is a disorder along with the depiction of autism as "a difference" and not much more.
2) with the fact that they switch from speaking about the whole spectrum to speaking solely about the Asperger Syndrome back and forth whenever they see fit to advance their agenda.

About the first point: autism is not "a difference". It is a brain disorder. It gives impairments, not strengths. And this is true for any kind of autism, even the mildest one, the Asperger's Syndrome.

For instance, I can give you a short analysis of "the strengths" and prove that they are not strengths.

I'll speak right now only about the so called "truthfulness and loyality" of the Aspies. It is not such a quality if you take a closer look.

A person is "truthful and loyal" when he CAN LIE and CAN DECEIVE but he chooses NOT TO LIE and NOT TO DECEIVE, my friend - even when he has to lose something because of his choice. So, it is about making a CONSCIOUS CHOICE between two possibilities, both equally eligible, based on moral grounds.

Not being able to lie does not prove any moral superiority, dear Ender. It simply proves that the brain of that person has a difficulty to maneuver contrary-to-facts notions.

I call this a DEFICIT of the superior cognition compartment of that person, not a strength, not a difference and even less a superiority.

I can move to the other "strengths" and "differences", if you wish.

Now about the second point: it is immoral to speak about the whole autistic spectrum with the "royal we" at one time and then quickly move to "hey, we, the aspies, don't want this and that".

The message of the folks in the ND line is deliberately confusing. They speak about "autism" meaning the whole spectrum, but when they go on about describing what that "autism" is, you understand that by this they mean only the upper side of the spectrum and about realities (going to college, being able to function, seeking better acceptance) that children profoundly delayed like Conor Doherty cannot even dream about.

I'd be with the ND guys if, in the stead of boasting how "normal" they are, they said something like this:

"Hey, look, we have this disorder in this mild form; this does not incapacitate us, so don't look to us as if we were martians.

But there are other in the same spectrum as we who are much more afflicted than us.

We can bear testimony for us as well as for them about how hard it is to live with this disorder".

THAT would be true and compassionate autism advocacy!

Now regarding my "autism". I was almost sure you'd say something like this. But I have no grudges against you :o)

I do not have autism, despite the fact of having an autistic son. I do not have Kanner autism or PDD-NOS, because I did not have any speech impairment as a child.

I do not have Asperger's because I have no trouble maneuvering or understanding emotions.

On the contrary, I'm rather emotionally sensitive to the emotions of others, especially if they suffer.

I'm rather overly compassionate - there may be a psychological imbalance there, which certainly has nothing to do with Asperger's or autism.

I mentioned all these things about me to show that things are not necessarily the way they seem.

Some disparate strengths do not mean autism gives strengths.

And people may have characteristics that resemble some autistic traits without being autistic.

When true and real autism is in place I believe there is no reason to boast or rejoice.

There is reason to fight more acceptance and dignity.

But there's not a single reason to fight against a cure or against treating autism as what it is: a brain disorder.

Ender said...

"Ender,
You folks with brain damage need competent adults to make those decisions for you. You will thank us when you're normal."- Mr (and I use that term loosely) John Best: https://www.blogger.com/comment.g?blogID=20954432&postID=5114267455846144812.

They will force a cure upon us, generally before we are too young to say no (or at least too young to have anyone listen to us when we say no).

Beyond that most aspies can lie, and many aspies can be quite good at it. I can't tell you how many aspies have tricked me when I worked with them. They just generally don't, except about small stuff, because they VALUE honesty and loyalty. Yes, this does pose problems, and yes, they do have a hard time understanding when they are being lied too, but the way you stated it was totally false and made it look like you got your knowledge of Asperger's from A Curious Incident... BTW how many aspies have you worked with? I must admit I haven't worked with all that many, maybe a few 100.

Though I am wondering how you will say preservating on a topic is such a bad thing. I mean like it or not your computer was made by someone preservating for long periods of time (now he might not be an aspie, but he certainly preservated more then the average 20-something ever does in his lifetime.)

Heck, even intense focus on intricite details certainly has its strengths. I can't tell you how many awards I have one, and how many grades I have gotten because I noticed what no one else could. Hell, my freshman year of college I was even offered a job with a law firm because of this ability which is so common with asperger's kids (sadly I had to decline, was busy enough with school as it was).

Now as much as I generally agree with Ari, I agree Ari has a tendency to talk for all autistics, and not just the HFA/aspie autistics. This sadly is a problem everywhere. GLADD speaks for all LBGT people, even though many don't agree with their cause. Access Living (a Chicagon group I worked with shortly before) speaks for all disabled people, even though some would have reason to believe they were hurting them. ETC. I do think that most aspies/HFAs agree with Ari however, and if he used the royal we with them, most of us wouldn't argue. "Nothing about us, without us." has long been the montra of the disability community (at least aging back to the days of the "Deaf President Now" campaign), even if the "us" was unclearly defined.

Understand though that while Ari is the most popular voice of the ND movement, he is certainly not the only one. Many of us (like myself) make sure to disconnect LFA kids from our argument, even if we are still in the statistics that prove the "epidemic". Though in this article at least I think we should cut him some slack as he was speaking out against eugenics and abortions (which many believe could easily happen within the next few years). I would hope we all want to prevent that.

Ender said...

Part 2-

And I am still not entirely convinced you aren't an aspie. Quite frankly you sound a lot like me and quite a few others diagnosed with asperger's (Kenneth Hall immedately comes to mind). While I can't read the emotions of others I am extremely sensative to their pain to the point of one summer working at a summer camp that had some kids that experienced all forms of abuse while similatiously trying to save another boy (13 year old looking at life in prision) I would freak out on a near daily basis. From what I have seen this isn't all that uncommon with aspies I have worked with. We still are aspies, we still can't neccessarily read emotions, but we can read experiences quite well and internalize them. I should ask about that sometime. Beyond that while I am not the most graceful person I have ever met I WAS (and will be again if I have anything to say about it) one of the fastest people I have ever met. So I am quite manuervable too, even if it was always in my awkward way (yea I will never win a 100 yard dash against the best in the world, but against the best in my school I stand a damn good chance ;), and 400 yard dash, forget about it.) So I certainly don't think that being manervable is neccessarily an anti-aspie thing.

But lets go with the theory that you aren't and aspie, you still go to prove the whole genetic theory. Sortof like how neither one of my parents was an aspie but they both showed traits (and one of my cousins I am damn near sure is somewhere on the spectrum) but weren't quite there, I both show traits and are there. It is quite interesting, and I would hope that you would admit some of your traits are quite aspieesque. Even Stephen Stills said it was autistic traits (without being autistic) that lead him to being one of the best guitarists of his time.

As for fighting a cure that way, it does bring up mixed emotions. On one hand I might be the best way to get a cure, on the other it demonizes us and makes people wonder how we could like being who we are. And when you can't guarentee me (no matter how hard you try) that I will still be able to preservate and focus like an aspie once you give out the cure, I will have to say no to it always.

Marius Filip said...

Ender

You should be able to make a difference between John Best's rhetoric and what he really has to say.

I believe he wanted to say "you are so far away from common sense that you need someone closer to common sense to guide you".

A parent has EVERY right to "force" whatever he feels it is beneficial to his child and it is accepted by the society, including a cure.

Come on Ender, get married, have kids and watch whether your young ones want to go benevolently to school. Does this mean we have to keep them illiterate?

In the respect of ND lacking common sense, I fully subscribe. The name itself is an oxymoron: neurodiversity with people who cannot wipe their butt? Yes, I am speaking (again) about the low functioning folks.

Neurodiversity with people who cannot understand emotions? Who feel like screaming when they see red (a young woman with Asperger's from England) or when they hear the train screeching?

No, this is no neurodiversity. It is the difference between normalcy and pathological.

The stuff with Aspies VALUING honesty and stuff is totally laughable.

Large groups of people are not morally uniform, my friend. Large groups of people (nations, races, professional unions) are formed of people who may differ morally as much Himalaya differs from the Amazonian plain.

You have Americans, Dutch, Russians or whoever nationals who VALUE honesty and stuff and you have Americans, Dutch, Russians and whatever nationals who are complete jerks.

You have white, black, Asian folks who VALUE honesty and stuff and you have white, black, Asian folks who are total jerks.

You have engineers, doctors, janitors and miners who VALUE honesty and stuff and you have engineers, doctors, janitors and miners who are complete jerks.

I have absolutely NO reason to assert that with Aspies or autistics is any different.

Being a noble and moral human being is a personal thing, my friend. There are no "morally superior" nations, races, professional groups or "neural wiring types".

The fact that you believe I am an Aspie based solely on how I write proves nothing else than how unsubstantiated the "Aspie community" is.

Practically whoever feels like an Aspie can be an Aspie and his "brothers" accept him as an Aspie! Cool!

This seems to me more like the people who find romance over the internet. They "fall in love" over the wire but when they first meet, it is a 99.99% chance that their "love" was solely in their heads.

I prefer reality. And the reality cries loud: autism is a brain disorder with a lot of problems and no true benefits and the so-called "autistic community" is, to me at least, a delusion.

The advantages you speak about in your case have been of benefit to you because you had OTHER qualities which made your teachers consider them in the first place.

And I bet that those OTHER qualities of yours were quite neurotypical.

In other words, the so-called "positive" autistic traits are worthless if they are not accompanied by other (neurotypical) traits that put the first ones into a good perspective and give value to them.

You deplore demonization? How about the grave and dehumanizing mistake to put equal sign between a human being and his brain disorder?

Because that's exactly what Neurodiversity professes.

Ender said...

First off you can not detatch a guys rhetoric and what he is saying. He is asking a college graduates parent to force something that they do not desire onto them. In what way is this not evil?

I disagree that a parent has a "right" to force whatever they feel is "beneficial" to their child onto said child. I personally feel that men have it far easier in life then women and have to overcome less obstacles. Does that mean that I can raise my girl as a boy and start giving her testrone pills when she hits puberty? I don't think so. But that is just changing her physical appearance, not changing the way her brain functions, the way she functions. Thats what I don't think parents have a right to change. There is a difference between changing who our kid truly is, and forcing them to go to school.

And please stop speaking of low functioning folks, it just shows off your ignorance about asperger's and HFA.

And I believe you are an aspie based on your genetics, your history as you have described it, and yourself as you have described yourself. So please please don't build strawmen.

Once again your going against pretty much the entire psycatric community saying there are no benefits to asperger's. I'll tell you what, find me one psycatrist who agrees with you that asperger's (not LFA) has no benefits and I might start agreeing with you. But you can't find one because all of them do. From those who work with a couple aspies a year, to guys like Tony Attwood who work with 1000s a year, they all recognize that Asperger's has benefits.

Beyond that most teachers and most coaches hated me most of the time. So I am not quite sure what you are getting at with teachers noticing them. I was smarter at math because I preservated on math for large periods of time, thats it. I was extremely knowledgable about football because every book I read from 2nd to 6th grade was on sports, thats it. It wasn't because I was the greatest student. It wasn't because I was the greatest athlete (while I was extremely fast I had extremely poor hand eye coordination). It was just because I preservated and had a strong desire for knowledge in those areas.

And I believe I am an aspie, I believe that if you take away my asperger's (forceably as your buddy Johnyboy believes should happen) you take away who I truly am. No longer will I be able to study the topics that I enjoy for hours and days on end. No longer will I be able to see those small intricite details that everyone else misses. I will be boring, and no thanks to that.

Marius Filip said...

Ender

You don't even know you are an Aspie. So, you should stop pretending you are one.

You should not take my words personally. It's not about you I am arguing here, it is about the autism spectrum disorder. A principle, not a person.

To understand better John Best watch the "13 angry men" movie and find out that when someone says "I'll kill you" he doesn't really mean he will.

Autism is not "the way you are". Perhaps we shouldn't treat schizophrenia either, because that's "how they are".

Autism is a brain disorder, that's why it is in DSM-IV.

Before speaking about parental rights, firstly have some kids of your own and then talk. Do not overlook that I was talking about parental measures ACCEPTED by the society.

Treating autism with ABA is VERY much like putting a child through school. ABA is nothing else than teaching adapted to the autistic mind. That "changing who you really are" crap does not hold water.

I don't care what you believe about me being an aspie or not. Clarify your status as an Aspie first, then decide who's an Aspie based on a few lines written on the internet. The 100s of Aspies that you say you have met have been diagnosed the same way?

You were good at math. OK! You knew about sports because you read books on sports. OK!

But before that you had THE CAPABILITY TO READ! Or you pretend this is another "autistic advantage"?

Now, go to John Best and discuss with him how well his son reads. Perhaps you'll learn how to appreciate that you have something in common with the "inhumane" neurotypicals.

Unlike other pro-cure people, I do not fundamentally separate Asperger's from autism because they ARE in the same spectrum.

The obsessions of the Aspies are a mild form of the staring at a piece of dust of the severe autistics.

The flapping of hands of the Aspies is a mild form of rocking back and forth of the severe autistics.

The sensory sensitivities of the Aspies are a mild form of the grave sensory disfunctionalities of the severe autistics.

Aspies are upper in the spectrum. The same spectrum.

The tragedy in all this is that you believe you will be BORING without a brain disorder.

This is the kind of dehumanization that the Neurodiversity ideology brings: people start to think they are worthless if their disability is taken away.

Now let me tell you what I mean by denying that autism has advantages. I do NOT hold that in any case any characteristic is a disadvantage.

I mean that IN PRINCIPLE, and in MOST cases they are HINDRANCES and not advantages. This includes the obsessions that you are so proud about, this includes the attention to detail.

Watch the videos from the MIND Institute and see how much value the attention to detail has: it comes at the expense of disturbing a more important ability, the ability to CONCEPTUALIZE.

To make myself better understood, take obesity for instance. It is undeniable that some people are more attractive when they are chubby and become outright ugly when they lose weight.

The Greek singer Demis Roussoss built a career out of his obesity. His appearance and his oriental garments triggered a certain kind of sex appeal in his female audience.

So, look, even obesity may bring advantages!

Really? No!

Obesity means larger body, more narrow chances to find a mate, many health complications and a shorter life span.

So, IN PRINCIPLE and IN GENERAL, obesity brings no advantages at all and it is an illness that we have to fight, not accept.

The same with autism.

Autism is NOT what you are, my friend. I am saddened to see that you are so deceived to believe that without a brain disorder you would be boring. As I've wrote above, THIS is the dehumanizing effect of Neurodiverisity philosophy.

Autistic people are MUCH more than their autism.

Autism is a DISORDER in the brain: nothing more, nothing less.

Ender said...

Whoever said I was talking about something as simple as ABA, I really wasn't. Beyond that simple fact neither John Best or Jonathon really consider that a cure (I think John Best compared it to teaching monkeys tricks once) so they aren't talking about ABA either. Jonathon is frequently talking about gene therapy (changing genes, yea thats changing who you really are) and John Best is talking about treatments that don't really work, such as castrating your children (well sortof) that he we will move on from when gene therapy is possible.

And my ability to read has nothing to do with autism one way or another. Many people (perhaps most people) with asperger's syndrome are hyperlexic, so like so many people with asperger's I learned to read at around the age of 3 (Little Bear at first, moved on from there). So I could consider that an aspie trait :-p. Beyond that please stop talking about LFA, its really getting annoying seeing as how I think they should be able to cure such kids.

Beyond that in a mild form it can be useful (by the way autistics flap their hands just as much as aspies, and aspies rock back and forth as much as autistics).

Now that we are getting somewhere and you will admit in some cases aspie traits will be an advantage. That means that I can do things very few others can. I mean imagine if it wasn't for people preservating we might not have the lightbulb, PC, internet, nuclear power (or even the theory of such), or any other glorious inventions that came at the cost of one guy consentrating on something for hours and days on end. Now this is not to say I will ever do such a thing (as much as I would love too I will probably never coach beyond high school football and I gave up on math when my teachers made it boring for me) but whos to say what we will miss out on if you cure all of us.

I mean 13 years after Asperger's became an official diagnosis and we already have a nobel prize winner (Vernon Smith) and an important inventor (Bram Cohen). Think about how many undiagnosed aspies are out there that have done similiar things. Just doing a little more research on the topic Asperger himself supposedly followed around kids who went on to be professors (Fritz V, who allegedly corrected Newton) and nobel prize winners (Elfriede Jelinek), and he was convinced such traits helped them in their adult life. Hell, he himself is largely believed to have the disorder. You can hardly say the same thing about obesity.

And I am certainly more then my asperger's. But how do I define what makes me interesting without defining my asperger's. Am I not my ability to concentrate on the small details in things. Am I not my obsessive personality. Am I not my love of sports. Am I not my obsessiveness to help kids like me (sometimes to the point of getting me in trouble). Certainly I am more then this, but that is certainly part of who I am. If you took my asperger's away, and I was no longer able to concentrate on such stuff, who would I be?

To end lets listen to the worlds of Hans Asperger:

"We are convinced, then, that autistic people have their place in the organism of the social community. They fulfil their role well, perhaps better than anyone else could, and we are talking of people who as children had the greatest difficulties and caused untold worries to their care-givers."

Marius Filip said...

Ender

Firstly: the Aspie traits are useless if there are not other characteristics in the person to put them into value. On the contrary, they are hindrances - the obsessions, the attention to detail and the like.

Secondly: you make a huge confusion between "autistic traits" and autism or Asperger's.

You can take virtually any characteristic which involves concentration and resilience as "autistic trait" and thus prove anything.

The fact that "you" have a Nobel Prize winner proves nothing, my friend.

It is truly childish to say "we have a Nobel Prize winner" - as if America having 75% of the Nobel Prize winners makes an American 4 times smarter than a guy living in other parts of the world.

I'd call this Aspergian mythology. You can find it in small groups that try to form and identity and in the absence of hard facts they fabricate mythologies that make them feel better.

Let me make the things clear for you, my friend. Curing Asperger's does not mean humanity will lose anything except a disorder of the brain.

We will not lose the Relativity Theory, we will not lose the light bulb or any other future invention or discovery.

And certainly we will not lose Nobel Prize winners or folks who concentrate for hours on a thing - for the plain and simple fact that ANY thing which is valuable takes concentration and hard work.

Putting a Aspergian monopole on any intelligent byproduct of humanity it's very cultish, I'd say - but one cannot expect much more from the ideology that can make a person believe he will become uninteresting without a brain disorder.

In the respect of Hans Asperger, you extract a text out of context and try to use it as a proof.

For the sake of the truth, you should add the descriptions of Kanner or state clearly that what Hans Asperger was speaking about did not apply the whole spectrum but only that niche which we call today the Asperger's Syndrome.

Otherwise, you'd have to explain how crippled kids who cannot make even the basic inferences "fulfil their role well, perhaps better than anyone else could".

Ender, do not deceive yourself. Whatever makes Aspies common with autism cripples people, it does not enhance them - and if these traits are valuable in some niches, it is because Aspies have the great luck to be closer to the standard than their less than lucky fellow autistics, and not the other way around.

Now about ABA - can I asume you are in favor of a "simple thing" like ABA?

Because I favor facts over mythology, I must state clearly that autism is defined in BEHAVIORAL terms.

No underlying cause is properly known, perhaps that's why anybody, like you, can pretend to be an Aspie if he has some peculiarities or sensitivities (I've even found a "self diagnosed Aspie" woman on the internet!).

Until the underlying causes are known and as long as autism is defined in behavioral terms, "curing" autism will reside in the realm of behavior.

No matter what treatment you apply, whether it is discrete trial (ABA), incidental learning (PRT), an evolutionary approach (DIR/Floortime), a dynamic approach (RDI), a cognitive approach (the cognitive-behavioral therapy for Asperger's) a biomedical approach - what you ultimately look at is a change in behavior.

So, the sheer lack of understanding force us to look at behavior despite the fact that, most likely, autism is a collection of illnesses with very different underlying neural realities.