"I have read a bit about Ari, and so far.... I can't understand why people put him down for only being 22 years of age. I am friends with a boy who is 16 who is just as experienced. One thing I dont understand is why he doesn't believe in finding a cure. A cure would be nice - don't you think?"Now, before I continue, please keep in mind that the following is my own opinion. I am not here to put words into Ari's or anyone elses mouths. I do not speak for Ari or anyone else. This is me making my own conclusions based on what I have read and discussed online to date.
Rather than saying Ari doesn't believe in finding a cure, I think it's more a case of he doesn't want to be cured. I've seen adults on the Spectrum say this numerous times and then all these parents jump up and down and twist the words to mean that these 'horrible' people have publicly stated that they're against curing Autism. If the man is or isn't for a cure to Autism then that's his business, he's entitled to his opinion as much as the rest of us. I don't believe in finding a cure either. It's not because I don't want to find a cure, I'd be happy if a magic pill came out tomorrow and eased the confusion for those who needed it. The only reason I don't believe in finding a cure is simply because it is not scientifically possible, and building up the hopes of people who don't know this is very disturbing for me. I'd love a cure, I just don't believe it's possible without restructuring the anatomy of the Autistic brain. There are physical differences in the brains of those on the Spectrum that cause the issues related to Autism. Most people don't want to know about this because it means, in their eyes, that there is no hope of their children ever being 'normal'. Progress can be made for the fortunate people on the Spectrum, but an all out cure is simply not scientifically feasable.
Ari's stance on genetic testing is more of an anti-abortion issue I think. He see's the issue in that it might have been him that was aborted had a test been available at the time he was conceived and that people on the Spectrum have just as much right to live as anyone else, rather than be 'prevented' from being Autistic via fetal execution. Again, this is his opinion and I admire people with opinions. Even if I wasn't to agree with this opinion, I would still admire the man for his opinions and for having the strength to come out in public to state it for the rest of the world to dissect and debate. And for the record, I do believe that people on the Spectrum have as much right to live as the next person, but I'm also not anti-abortion. It has it's merits where it is necessary so long as it is not abused just because a parent isn't happy with the perfection or lack thereof of their upcoming child.
I've recently been talking with adults on the Spectrum who are beginning to see themselves as a new human culture, not in those words, but in effect they are saying, 'Hey, there are now people on the Spectrum here. Don't discriminate against us! We're humans too. We are a new breed and want to integrate with society, get used to it!' which I totally admire. We are now seeing the beginnings of movements in the United States similar to what happened with the African American people when they started wanting equality with white people, rightly so I must add. Only now it's the people on the Spectrum and their parents and siblings and carers saying "Hey! We wan't to be recognised and treated fairly now!" There are many schools in the United States that routinely place children on the Spectrum in restraining holds for hours on end. If the child then fights back out of sheer terror the police are called and children as young as 5 are being arrested and led away in handcuffs. These people just don't get it! DISCIPLINE DOES NOT CURE AUTISM and it is NOT an effective treatment. If anything, it makes the situation worse. These are not animals or naughty children. They are young people who need time and patience and nurturing to allow them to grow and mature at their own pace. Time to allow their extra brain cells to sort out which connections work best together. Patience with their frustrations as they learn to cope with various situations. Nurturing of their strengths to help develop confidence in themselves as they prepare for adulthood.
Autism and Aspergers does not suddenly vanish at the age of 6 or 13 or 18 or any other age. As some individuals on the Spectrum grow and mature they learn to manage life's little hurdles a little better. The Spectrum is here to stay, and we need to accept it as a new culture before we start throwing all these highly intelligent people back into the mental asylums and writing them off as diseased or mentally retarded. I've said it before and I'll say it again: Some of my most trusted and intelligent friends are individuals who live on the Spectrum. For those who learn to manage their abilities, society needs to change to include them in all aspects. For those who continue to struggle, even into adulthood, society needs to change to treat them as human beings. That's a good starting point. We can work on improving it from there.
Yes, I do support Ari Ne'eman. I support that he has his opinions and I support that he is intelligent and is representative of the Spectrum's newly arising culture. The man deserves to be a part of the history books, not for his opinions, but for his achievements, and I believe he has many achievements that are still yet to come for him.
I think what you say is excellent, and I agree whole-heartedly. The only thing you might consider changing is your stance on 'discipline'. After all, we all 'discipline' our children, as a matter of teaching that behavior has consequences, or that one act leads to another, quite naturally. I know what you mean, but maybe I would word it as physical punishment, or so.
ReplyDeleteThanks anonymous. Discipline has its merits but there are also times when it is simply the wrong way to go. It will not cure Autism yet there are people out there who think all our kids need is a good hard smack to stop the 'tantrums'. The world needs educating about Autism before it can fully understand and accept Autism. Physical restraint is not the answer.
ReplyDeleteWOW!!! I so agree with what you said Vince! Well said! Thank you for posting this because I was kind of wondering as to why people, IN THE AUTISM COMMUNITY, would even DARE throw stones against this young man when he shows hope for all of us?? Because he doesn't want to be cured?? THAT'S RIDICULOUS AND IT NEEDS TO STOP...In my humble opinion anyways!
ReplyDeleteThsnks Sadie. I had to add my comment to the following article which was brought to my attention after I'd written this blog. There were so many people commenting and making it all about 'curing' Autism, when clearly, a 'cure' is not possible anyway. 'Prevention' maybe, but 'cure' no.
ReplyDeletehttp://www.sfgate.com/cgi-bin/blogs/mpark/detail?blogid=164&entry_id=60097
If Ari Ne'eman restricted his coments to saying that HE did not want to be cured I doubt he would face so much opposition. The problem is he says WE don't want to be cured and purports to speak on behalf of people who are much more severely affected by autistic disorder than he is by his Aspergers. In doing so he also purports to speak on behalf of other people's children.
ReplyDeleteHis experience is relevant in assessing his ability to offer informed opinion about a subject which is important to a great number of people.
Well, whether Ari claims to speak for all people on the spectrum or not concerning this issue, I still find it an irrelevant argument against his appointment to the oouncil when a cure is not possible anyway. What's the point of arguing for something like a cure that can't phsyically happen? At most it will only be a prevention so that parents can choose to abort their babies if they find out that the fetus is on the spectrum. While Ari's voice on the council will oppose this, so will other council voices. In the same sense, there would more than likely be other members on the council who choose to support this proposal. The council should represent a broad section of the community, not just people who are all facing the same direction, in unison, agreeing with every word they all say. Having a diverse range of intelligent opinions all sitting at the same table encourages healthy debate before the final decisions get made. I'd still be more than happy to have a person on the council that actually represents the feasable issues rather than an entire council full of people who don't. Ari will be but one voice coming from the council, but an important voice at that. His voice will be an asset to the mix and it will make the mix worthwhile.
ReplyDeleteI believe that the testing/abortion argument is the same one that parents/people with Down Syndrome for that test. It is a valid argument that can be combated with education. I admit that when I was pregnant, I had an amniocentesis test. It was not going to change my mind about my child, I just wanted more information to be a better prepared parent. Autism and Aspergers are both a spectrum and an in-utero test will not show where on the spectrum the child will fall (just like Down Syndrome).
ReplyDeleteEducation to the public in large can only help.
Ari has never, to my knowledge, made a stance about abortion. He has taken a stance against eugenics. There is an important difference. Furthermore, it doesn't matter inthe slightest whether he is for or against cure for himself or anyone else, because the national council of disability has nothing to do with cures, treatments, or genetic or medical research. They are responsible for services, supports, education, healthcare, community living, and jobs fornpeoplenwith disabilities. These quality of life issues are what ari has always focused on and where his expertise lies. He is a perfect fit.
ReplyDeleteThankyou Katie. It's a pity Age of Autism is going out of it's way to say otherwise now. http://www.ageofautism.com/2010/04/neemans-dangerous-agenda-for-residential-housing-of-the-severely-disabled-in-new-jersey-.html
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