Friday, March 11, 2011

Does Ari Ne'eman believe parents of low functioning autistic children want their kids to 'drop dead'?

I just came across this rather entertaining video on youtube in which Ari Ne'eman's position on the NCD is endorsed. About 2 minutes and 30 seconds or so into the video what this individual says is rather shocking. He states that the parents of low functioning autistic children wish their kids would 'drop dead'. I wonder why Ari Ne'eman has not complained to youtube or has not gone out of his way to disavow this video that his supporter made. Or does Ne'eman himself believe this? We have seen in the past that some supporters of neurodiversity whose blog was linked on the autism hub stated that parents of autistic children who support a cure for their children are like members of the ku klux klan who are forced to raise black children. When your humble blogger asked hub owner Dave Seidel about this, he refused to denounce that statement.

We have also seen in the past that neurodiversity blogger "the autistic bitch from hell" calls autistics that she does not agree with who want a cure "uncle toms". She has also stated that those of us who have had trouble keeping a job due to our disability are lazy loafers who just want a government handout and won't take responsibility for our lives. Also she has stated that those of us who don't agree with her positions should either be taken out and shot or turned into catfood. This person has donated to ASAN. It is rumored that "the autistic bitch from hell" is in fact attorney Meg Evans who is secretary of Ne'eman's organization, ASAN one of the top people in the organization barely below Ne'eman himself in the chain of command. To the best of my knowledge, Ne'eman has never denounced ABFH .

I wonder if Ari Ne'eman would care to comment on this statement from one of his supporters. I wonder if President Obama will read my blog and comment why he would appoint an individual to a government position who keeps company with people like this. However, I won't hold my breath.


24 comments:

Adrianna said...

He seems to think that people who support autism cure organizations are morally complicit with murder. Why not?

On the other hand, due to his opposition to the ransom note campaign, he also seems to think that parents of LFAs already see their child as dead or gone because of the autism.

Either way, it sounds like it could be him. Even if he does not share that view, his silence with regard to the behavior of his supporters reveals him to be the most politically savvy, image-conscious autistic around. As per usual.

MJ said...

Wow.

The child in the video has absolutely no clue what he is talking about. His ignorance is breathtaking.

If I was Ari Ne'eman, I wouldn't acknowledge that someone like this claimed to be my supporter either.

Adrianna said...

"If I was Ari Ne'eman, I wouldn't acknowledge that someone like this claimed to be my supporter either."

I understand what you're saying, but people already *know* that he's a supporter of Ne'eman. In that case, it would be a good idea to acknowledge it.

Stephanie Lynn Keil said...

I highly doubt that any parent would want a child to "drop dead," no matter what was wrong with the child, unless the parent(s) had some kind of severe mental illness/emotional/psychological problem and no longer wanted the child for whatever reason.

I really don't understand how someone could equate curing profound autism with murder.

I think of "curing autism" as such: my cousin has profound autism (19, completely non-verbal, diaper-wearing and etc.) and this is a case where curing his autism would definitely outweigh not curing his autism.

Then there are the other, very mild cases (e.g. Ari Ne'eman and everyone over at ASAN) who believe that autism shouldn't be cured because there is nothing wrong with being autistic (and there isn't.)

But the way "I" see it is this: I would rather find a cure for autism so that those most severely affected wouldn't be so profoundly disabled. I am willing to sacrifice my HFA status and have autism be eliminated so that the most profound could be cured.

But, I also think, why is a "cure" always associated with "removing" the autism? What if, after years of research, a pill is developed so that all one has to do is take a pill (or more) and the autism symptoms can be helped, as is the case in bipolar and schizophrenia (and some medications have already been shown to help with autism symptoms). Not everyone with bipolar or schizophrenia takes medication but most do to control their symptoms. If you don't want to take medication than don't; if you do want to take it than do.

It is possible that some kind of pill could be developed to help autism. But, unfortunately, a pill can't be developed to help MR, which is often co-morbid with autism.

My cousin and I started out the same: we both had rather severe autism...but I became high-functioning and he didn't, most likely because I have a high IQ and my cousin has MR. So, even if the autism symptoms are eliminated a person could still have MR, which can't be cured at all...

Minority said...

He also advocates violence, suggesting punching people in the face and then running away.

lurker said...

That guy is quite ignorant. I bet he and many others can't name one accomplishment of Ne'eman's through the ASAN. I wonder who made him the voice of the entire autism community. I think those bunch of characters whine about parents a lot to distract others from their tyrranical goals which they want the low-functioning to be subject to. They don't want to be seen barking their restrictive agenda to the faces of the LFAs who wouldn't necessarily agree with it.

SM69 said...

With all due respect- i do not see why people get offended about a single view that is obviously uninformed and shocking. It happens all the time, and the least attention we pay, the better. Focus on important matters- things that will make a difference to autism, there are many.

I'd like to flag an article on the JRC published yesterday in the Guardian. I have covered this here with the scanned photos which are not available online.

http://skymaker69.blogspot.com/

Anonymous said...

This guy isn't autistic, not even Asperger's. He has dissassociative identity disorder on Axis 1, like someone else that commented here. He also has antisocial personality disorder. How do I know? He revealed it to me in an email to me some time ago.

However, he does a wonderful southern mother impression as evident in that video.

Socrates said...

Given the guy in the video is autistic and gay, it's not surprising he's prepared to get physical. 's called survival. As for what he's saying, who cares?

MJ said...

Actually I would bet that this child is just trying to find himself (or whatever you want to call it). I doubt he is fighting for "survival".

As for what he is saying, well, when a group of people like to tell parent's like me that we don't give a f*** about our kids, we tend to get a little annoyed by it.

Parents of children on the spectrum get abuse from teachers, other parents, therapists, other children, even complete strangers who you pass on the street. You really have no idea (well, maybe some of you do) how many people seem to feel that they could do a much better job and that they have the right to judge your actions. And all of that is before you deal with the autism itself.

So when you have a child on the internet posting rants then it is worth the time to talk about and showing why it is utter nonsense. Especially when you consider that a lot of Ari Ne'eman's supporters probably hold similar beliefs.

jonathan said...

Especially when you consider that a lot of Ari Ne'eman's supporters probably hold similar beliefs.

And Ari Ne'eman probably holds similar beliefs himself.

Socrates said...

Trust me MJ, if you're Queer and autistic you will at some point have to learn to kick ass to survive.

Ari has supporters? He has a mummy and a great deal of social capital.

Meanwhile, in the real world shouty, squeally and punchy autistics continue to get teh shitty end of the stick. Unless of course you are middle class and your family will look after you and look out for you.

Do I sound bitter? I am.

SM69 said...

MJ

"So when you have a child on the internet posting rants then it is worth the time to talk about and showing why it is utter nonsense"

If you are a grown up parent who has been, as you said, exposed to criticisms for standing by your ASD child, you should not be offended or threatened in any way by a kid like this guy on the Internet- it's so obvious the guy does not function right. Does he constitute a threat, does he have any influence on other's opinion? Well, I really doubt it. Though of course in the US, with such an easy access to guns, you'll never know, but the problem is gun control, not the guy per se,... There are millions uneducated people on the Internet holding extremist views, sometimes far worse than what this guy expressed. Look at any blogs on politics, look at the none sense that goes on on YT.

Parents who had to face adversity for standing by our child's rights, right of education and health, right of inclusion, end up strong, end up focused, learn not to be caught in ridiculous arguments. Well, I think at least.

Are all supporters of Ari and Ari himself like this? I don't know, yes many AS people can be very misled, judging is not always easy for anyone, and a personality of hypersensitivity to criticisms combined with obsessiveness, can make some go out of line. I don't think unless we are their parent, there is anything we can do about it. Even talking with them about the issues will unlikely make any difference. I am still in the view therefore, that to focus on the positive developments that can make a difference will be at the end of the day more important.

jonathan said...

Lorene Amet it seems misses the point of this post. The rantings of one obviously disturbed lunatic are not the reason for concern. The reason for concern is that this sort of crap is stated constantly by Ari Ne'eman and his minions. Ari Ne'eman has been appointed to a high level disability policy advisory position by the president of the united states as well as confirmed by the u.s. senate. It is of concern to me and I am sure MJ as well that someone who is clearly such an extremist can be listened to and have public policy recommendations that he makes be listened to by the president and congress. It does great harm to those of us who are too disabled and thus disenfranchised from speaking for ourselves or giving Mr. Obama and the rest of the congress our side of the story.

This aside from the fact that Ne'eman in the past stated that he did not consider himself disabled by stating "asperger's is hardly what anyone could call a disability" and also stating in his essay that autism was not a disability. He intentionally lied about this stating he never said autism was not a disability. He was proven to be dishonest by autism's gdfly.

SM69 said...

OK- Yes, I know your concerns- but if your concerns relate to what Ari says, report what that is, rather than what one of his followers expresses.

I am still maintaining that this follower weights nothing because he is essentially not functioning, that is obvious to me, and it's not a video of himself ranting that will make any difference.

Fr your information, very few people outside the ND groups know of Ari in the Eu. See the article on the JRC I referred to for example- if Ari had been important, the journalist would have consulted him or his organisation.

Ari has been elected because he has a long-standing relationship with the US gov through his mother, I have seen photos of him shaking Bush's hands as a teenager, that did not happen by chance- this is down to connection, influence and politics. Yes he holds unhelpful views and yes these potentially are dangerous to others on the spectrum, especially LFA, but his views are not what made him being elected. And I doubt he will make any difference even in this privilege position. I mean even Obama cannot do what he wants to do.

May be call me naive, I wait to see- Maybe I am too much of an idealist and I believe there is a lot better than this on offer.

SM69 said...

Meant to ask sometimes ago- does it cost anything for adults to go through a diagnosis assessment in the US? Is that covered in any way, even if the person does not work?

jonathan said...

It depends on the circumstances. When I was evaluated for social security disability a few years ago or so, the government paid for that evaluation with a psychologist.

Other than this type of thing, the answer is probably no. We have no national health insurance here in the u.s.a, excepting what Obama has proposed which will go into effect 2014 which is ironic because under his plan everyone is required to buy health insurance but his administrations position with the appointment of Ne'eman is that no one with autisnm should be cured.

Kids may get evaluations for regional center services in california and things like that which are paid for by the state of california, i don't know. I guess someone who reads this can correct me if i am mistaken.

autismandoughtisms said...

The idea that one person at one end of the spectrum, can speak for all people at that end of the spectrum, is ridiculous enough. But the idea that someone at the high end of the spectrum, can speak on behalf of everyone on the spectrum - including the low-functioning - beggers belief.

The best and most aware voice for a child on the spectrum, is almost always going to be their own parent: The person who knows them best, loves them the most, and is willing to do anything and everything to give them a shot at the best life possible. To discount that voice because it's not autistic, is... *insert nasty words*

As extreme and ridiculous as these people are, it's important to speak up against them and take them seriously (to an extent) since they are getting listened to and starting to potentially impact policy. Ignoring them could be dangerous to the high needs of our kids.

Thanks for your post, it's an important issue.

Anonymous said...

The best and most aware voice for a child on the spectrum, is almost always going to be their own parent: The person who knows them best, loves them the most, and is willing to do anything and everything to give them a shot at the best life possible. To discount that voice because it's not autistic, is...

Wow, I have never read a better way to put this as this was written.

SM69 said...

If it costs to get a diagnosis as an adult, given than true AS people tend to be unemployed and short of money, isn’t it expected that many have not had the chance to get a proper assessment in place? Shouldn’t be a good service to help putting in place?

Yes this rosy “parent know the best” view is touching but is it necessarily true?

Yes a parent knows and feels and loves their child best and yes a parent is potentially the most devoted and best advocate for him or her. But a parent does not necessarily know what intervention would be best, what there is out there that could potentially even fully deal with the issues the child may have, why would they know this, a parent comes with love above all, not necessarily knowledge of autism?

Not all parents have the skills to learn from the Internet, to be critical and to turn around every single stone for a solution to their child’s difficulties. And to be honest, many parents have found themselves drained, depressed and at times even paralysed and unable to act to assist their child. I am working with parents, and yes many are very knowledgeable and in tune, but in my experience it is less than 10% of them. At times, the level of basic knowledge, for example with regard to cooking and diet is incredibly low. I mean shockingly so.

There was a very interesting debate on this issue from disability right activist, Robert Softly regarding a seven-year-old physically disabled girl with a severe brain disorder who was taken into hospital by her parents for a series of major operations. This is a true story that was developed as a play (Girl X) focusing on the blog debate that took place on this issue, do parents know the best? Very good arguments developed.

More here: http://www.heraldscotland.com/mobile/arts-ents/stage-visual-arts/deep-in-a-moral-maze-1.1087712

autismandoughtisms said...

SM69, who - precisely - would you place the children in the hands of, if not their parents? Are you advocating for handing them over to governments and medical professionals, or are you just saying (the obvious) - that parents need resources and support to give their children the best? The latter stance is true of ALL children and parent relationships, not just families with autistic members. It is unclear what you're arguing for, but what it looks like you're arguing for appears very ill thought-out. Perhaps if you clarify you stance..?

SM69 said...

Autismandoughtisms

Hi there- if you follow the thread, we were talking about advocacy- who can represent autism and who can speak for it? You are right some parents know absolutely the best what their child need, but I was pointing out that this is not always the case. I of course did not mean that these parents should not be looking and caring for their child. Love and care is more important than knowledge for a child, at least in the early years, and parents are for sure the best for this. Every child needs his/her parents or loving figure in the role of a parent to care for him- (I don't mean to exclude reconstituted families that can work very well for a child as we all know).

But knowledge, as far as autism is concerned is essential, it can change someone's life around to have access to it or not. Parents know how to love, know when the child is unwell, know when the child should have better, but don't necessarily know what that better is. And as far as autism goes, sometimes, the needed knowledge is quite technical and high. Sometimes, it's knowledge of medicine, sometimes, it's being able to navigate through a range of ideas to assist with a behavioral issue, or an educational need. Some parents can learn, or get those who know to help them. Some parents even without knowledge available can find a creative solution. Others can't. It's human nature.

I have argued before on this blog I think, that the collective knowledge we have as a community, parents, people with autism, professionals too, is what is the most accurate, collectively, and critically, and ideally it is a representation of such comprehensive knowledge that should serve as advocacy. Ari does not have that knowledge for sure, I don't think he can fully represent the needs of people with AS either, though his advocacy for better acceptance/ attitude change remains an important one to win. It's often half the solution, to be accepted for who you are, but only half of it.


Does it clarify my views?

autismandoughtisms said...

Grrrr, I just wrote out a lengthy reply that the computer/page lost, very aggravating. I don't have the heart (or time) to try to type it all out again.

Basically I said thank you for your clarification, and spelt out the views that I thought you were espousing and what was wrong with those views, and agreed that it was important to have a range of voices speaking out as long as they didn't claim to represent all autistic people. I wrote a post a few days ago on the topic which explains my own point of view: http://autismandoughtisms.wordpress.com/2011/03/15/supplanted-voices-speaking-for-non-verbal-autistics/

SM69 said...

Thank you – this is a well-written post, which I essentially agree with- with the slight reservation that whilst your view as a parent is undoubtedly correct, this is by no means universal, as I have previously expressed.

We have been around assisting families of ASD children for 5 years now and we have seen probably about 500 families by now, all socio-economic backgrounds and across 12 countries (EU and North Africa). I don’t think we are superficial in our sharing of information, but admittedly, there are potentially many issues that can impact on a child’s development. A child’s autism does not result from poor parenting, we know this (though there is a strong possibilities that the health of the parents can be one of several factors to impact on the child’s autism), however, a child’s progression through autism depends very much on what the parents can bring to respond to the challenge. Let’s be honest, some parents are totally at loss, totally drained, depressed, and totally paralysed. Many children are very affected in their autism, presents with very limited communication, (only through behaviour), constant moving, no attention, next to no sleep, very limited diet etc etc. I ‘ll skip on the SIB kids, which represent a higher degree of challenge still. It is understanding that parents can be very down and almost unable to respond to that challenge. But there is a little more to it still I believe.

I’d like to flag some studies being conducted in Scotland, that specifically look at parenting issues. The main GP involved Dr. Phil Wilson actually works with Prof. Gillberg to conduct a large-scale observation of the children from ante-natal to 3 years old (initially they were aiming at monitoring 11,000 families, but there were issues with funding, I don’t know at the moment what the scale will be- the study is called ABCD- Antenatal, Birth, Cohort Development).

The monitoring would even involve regular videoing of the child and assessments being conducted for attention, hyperactivity, socialisation etc. The main factors that are being looked at, in relation to these developmental assessments, are parenting. I was involved in the consultation several years ago briefly, as they initially wanted to consider screening for the impact of environmental health factors, immune system, gut, toxins. I had called this ABCDE with E for Environment, but E was dropped, with the sole focus remaining on parenting, I believe mostly because of cost implications, and of course because the researchers believe autism and related conditions could be related to psychological factors and not so much to the environment.

An extract from a press report (http://www.youngscotlandinmind.org.uk/news/article.asp?id=440&title=Toddlers+face+tests+to+find+delinquents+of+the+future):

“Dr Phil Wilson, a senior lecturer in infant mental health at Glasgow University and who is part of a working group behind the project, said: "One of the things that is really worrying is that on the overall measures of child wellbeing that Unicef publishes, Scotland is bottom of the league of developed countries.”


"It is important that this programme is seen as an exercise in giving children the best chance. The way we have to think about it is this: how do we create a society where children are ready to learn when they go to school? No parent would take issue with that."

All to say that there are serious concerns here on parenting issues. No later than this morning on BBC4, I heard that about 100 youngsters in England have initiated charges against the social services for failing to protect them from harm experienced in their own home. They said they have long-term damage of the consequence of this and the authorities were aware of the abuse but did not respond by protecting them.

I’ll read more of your posts.