*Proviso: I am not a spokesperson for any other person and/or group. The term ‘neurodiversity’ did not originate with me. What follows is my personal opinion and what I believe the concept of neurodiversity represents. I believe I voice opinions common to many in the neurodiversity group but I may well be wrong. Sometimes I refer to ‘we’ and sometimes ‘I’. When I refer to ‘we’ I think I am repeating the consensus of neurodiversitiy opinion but bear in mind I could well be wrong.*
*1) Neurodiversity proponents are anti-parent.*
False. I’m a parent. I’m parent to 3 kids of whom one is NT, one is autistic and one is too young to tell. I’ve never felt anyone in the ‘neurodiversity crowd’ is anti me. Kathleen is a parent. Camille is a parent. Anne is a parent.
*2) AutAdvo makes up the entire population of Neurodiversity proponents.*
False. There are literally hundreds of websites with thousands of participating autistics of all ‘levels’. The vast majority advocate acceptance. There are also a very large number of NT parents who advocate Neurodiversity. The desire to cure autism is heavily weighted towards North America. Look among your own group for evidence of that.
*3) Neurodiversity proponents say we should not treat our kids.*
False. This is one of the biggest points of contention. The issue is one of autism (the main point) versus comorbidities (side points). See the WikiPedia definition of comorbidity. What are some comorbidities? Gastric problems, ADHD, ADD, Depression, migrane. Why would you imagine we don’t want you to treat these things? These things are not autism. They are comorbidities of autism. They cannot be used to illustrate or define autism as they are not common to every autistic.
Don’t take my word for it. Go ask the Doctor who diagnosed your child.
We see your error as the failure to differentiate between the comorbidity and the autism. To us, one is treatable. The other is not. We do not fight for your childs right to have gastric issues.
You see our error as trying to prevent your child being treated. My own daughter receives PECS and Speech Therapy. I would not stand in any parents way who wanted to alleviate the suffering of their kids. Having terrible constipation is suffering. Having a different kind of thought process is not.
_Please note: It is worth reading Amanda’s thoughts on autism/comorbidities as they differ slightly from what I’ve written here. My own understanding of how this process pans out is altering as a result of this exchange with Amanda but I write here what is my most complete belief as of this minute._
*4) Neurodiversity proponents who are autistic are different than my child.*
True. They are mostly adults. Your kids are kids. However I don’t think thats your point. You believe that all autistic Neurodiversity proponents are ‘high functioning’. This is untrue, both now and historically. The facts are that for a lot of the autistic adults in the Neurodiversity movement their diagnosis was ‘low functioning’ when they were kids. But people grow and progress. Autism doesn’t stop progress, it just sets a different timetable for it. These adults are living breathing proof.
*5) Neurodiversity proponents are full of hate and/or racism.*
False. Just like you, we get angry and say stupid things. What Jerry Newport said was not on. Simple as that. It was, in my opinion, unacceptable. I am though totally bewildered how the words of one man apparently speak for everyone else. I’ve seen the posts from the other members of AutAdvo following Jerry Newport’s post. People were angry and disappointed with him. Not one person defended his position.
I was bemused to read posts by newer members of the EoH list (and one founding member) that castigated us for hate speech. Here’s an excerpt from an email I was sent earlier in the year from someone who hid their identity. This person (who had a Bellsouth IP address) had an in-depth knowledge of Evidence of Harm and although they never said so, that they came from EoH is beyond doubt – I received this email to my Yahoo spam account immediately after making a few posts myself on EoH.
Your retard daughter should just be fucking put down – shes no autist. Little bitch.
And racism? A member of Generation Rescue (or so they claimed) told me to:
…sit next to the nearest Arab with a backpack.
Alluding, of course, to the recent London suicide bombings, this person makes racist generalisations about Arabs (one of the ironies being that Rashid Buttar is himself of Arabic descent I understand) as well as wishing death on me.
Generation Rescue Bigwig John Best Jr has said that all parents of autistics who don’t chelate their kids are child abusers. Lujene Clarke of NoMercury told me that I was mentally ill because I said I had autistic relatives. My EoH debut was preceded by EoH list members referring to me as an idiot. I’ve been told I’m in the pay of Pharma companies, that I’m stupid, that I’ll go to Hell, that I’m in denial. My autistic friends have been told they are sociopath, that they have personality disorders, that they aren’t really autistic.
All of you who who rightly condemned Jerry Newport’s words – I urge you to denounce these examples of bigotry and hate too.
*6) Neurodiversity proponents say we don’t love our kids or want whats best for them.*
False. I have no doubt that you all love your kids just as much as I love mine. I’ve not seen any neurodiversity proponent claim you hate your kids.
What we say is that we think your love for your kids has blinded you to the reality that autism itself is not a problem to overcome but a reality to share with your child. We think that in your honest desire to do the best for your child you are desperate to treat the wrong thing. We also feel that some of the things you use to treat your kids are dangerous. Chelation for example. I’m on record as saying that its no-ones place to tell others what they can and cannot do to treat their kids but by that same token, I feel obliged to point the very real dangers to both your children’s health, your own bank balance and the very future of autism treatment research.
I believe the world should change for the good of my child. I don’t believe my child should meekly inherit the mantle of ‘second class citizen’. I see it as part of my job to fight for her right to get the help she needs and at the same time, be who she is.
There are so many better fights than this one you’re on. Better education, better care, better interventions, more rights, more respect. These are the things your child (and mine) will need as they continue to grow.
We’d like you to respect your child’s autism as something unique. We’d like you to treat your child with the medical interventions for their comorbidities that they may need to progress. We’d like you to realise that your children will grow up and if they were autistic then they still will be. We’d like you to think about the strong possibility that one day the autistic adults on AutAdvo might be your kids and another set of parents who believe something passionately will be insulting them by denigrating their worth and their neurology.
You believe thiomersal did your kids harm. You may be right. I doubt it, but you may be. What it definitely didn’t do though is cause autism. This is at the heart of what makes some of us angry in respect of this issue – treat your kids if they are mercury poisoned but please stop propagating so much negative stigma with constant references to autism being mercury poisoning.
*7) So autism is definitely not mercury poisoning?*
Definitely’s a very strong word. The consensus of opinion is that that is very unlikely to be true. In my daughters case, its definitely not true. Autism is a spectrum, its not an ‘either/or’ scenario. I think its likely that some people have a genetic predisposition for autism which may be triggered by an environmental insult and that that trigger may even be mercury in some cases but ‘trigger’ does not equal ’cause’. Even if what I believe is 100% accurate (which is doubtful, who is ever 100% accurate?) that would still mean the vast majority of autistics are autistic for reasons other than mercury.
*8) So why do neurodiversity proponents say they speak for my child?*
The way I see it is like this – I and my wife know our daughter better than anyone else alive. Whilst she is a child, we speak for her in all matters. But the fact is that she is autistic. It therefore is simple common sense that other autistics have thought processes closer to those of my daughter than any NT does. They think in similar ways. Its not a case of speaking *for*, its more like having a shared reality. If one or more of my kids were gay than I would still speak for them in all matters whilst they were children but not being gay I could not share that reality in the same way as other gay people could. By virtue of their shared reality of autism our kids and autistic adults share an area of being that NT parents can never share. Like it or not, that does give them a commonality and communal existence. With that community sometimes comes a voice. Can you really say, as NT parents, that you are closer in thought process to your kids than autistic adults? When it comes to what makes autistics tick can you really say that you as NT’s know better than other autistics?
Left Brain Right Brain 
I don’t think I can speak for any child. I think I can speak to the experience of being an ASD child and adult, and to the experience of parenting a verbal, hyperlexic, very odd ASD child. I can speak to the experience of being married to an undiagnosed spectrum person, too. But my experiences are necessarily different from everyone else’s in the details.
Speaking to is kind of a buzz phrase, maybe too pop psychology, but I can’t think of a better phrase right now…it’s a little different than “speaking about”. It’s more like directing answers to questions on a topic…
I don’t know if it’s a specifically American catch phrase so I’m interjecting an explanation… which is tangential and overdetailed… typical of me.
I think that if I had a schizophrenic teen, I would want to hear from schizophrenics what the experience of being sz is like. Even if their words didn’t quite make sense to me, I’d still know more from listening to them than if I never heard their viewpoints.
Even if autistics are abrasive or they get off track in their writing – you learn the meta-message that they deal with a problem of being blunt or too direct and they deal with brains that jump the track when they are thinking at least part of the time.
There are very few people who have the body of quality writing that Amanda Baggs has, and it’s there for free on autistics.org. Joel Smith, too, is non-verbal, he has stuff on atusitics.org. Patty Clark, even though she has died, has left a legacy of great information on autistics.cc
I have learned a ton about “low functioning” or “classic” or more debilitating or *whatever* autism from them. Michelle Dawson is incredibly eloquent and absolutely autistic, her stuff is on the web for free, too.
Then there are books, you can get them from a library or buy them, that explain what it’s like to be autistic, something no one else can really guess, well, they do guess, it’s just that they always guess wrong.
If I had a “classically” autistic child, I would hang on every word from them about autism. I do anyway.
Thanks, Kevin.
“Here’s an excerpt from an email I was sent earlier in the year from someone who hid their identity. This person (who had a Bellsouth IP address) had an in-depth knowledge of Evidence of Harm and although they never said so, that they came from EoH is beyond doubt – I received this email to my Yahoo spam account immediately after making a few posts myself on EoH:-> Your retard daughter should just be fucking put down – shes no autist. Little bitch.”
That quote from the EoH-er is pretty clearly hate speech. It is also very clearly meant to offend: there is no way on earth that a person could write that and not be intending to offend.
If anyone should be put down… who should it be? An autistic girl (diagnosed, I presume by a competent authority by whom she was seen), or someone who could write a horribly insensitive and nasty statement as the one quoted by Kevin in his FAQ part above?
Personally, if one had to go, I would *not* vote for it to be the little girl.
Can you provide a link to what Jerry Newport said? This is news to me, and as an advocate of neurodiversity (I hope, anyway…) I just feel I need to know what was said.
This particular controversy has passed me by! i’m sure the people I ‘wrangle’ with on a regular basis will enlighten me eventually, i’d just rather be prepared. Damage limitation and all that.
I hesitated for a long time before deciding to mention that email in this post. Although I have mentioned its existence privately to a few people I’ve not mentioned it publicly before as I didn’t want the sender to know just how much it shook me up. I deleted it almost straight after I traced the sender details as I didn’t want it on my harddrive even but I’ll never forget that line – its one of the most venomous things anyone has ever said to me – that it should come from someone who purports to be the parent of an autistic themselves was almost incomprehensible to me.
For better or worse, it cemented my opinion of a lot of the more ‘enthusiastic’ members of the Evidence of Harm maillist. Thats possibly unfair as it only came from one person but I hear toned down echoes of that same sentiment coming from that direction quite often.
It was certainly intended to offend. I try to hope that it was meant mostly as a sure-fire way to upset me (which it did) and that the sender doesn’t really believe what they wrote.
But sometimes I wonder. When you hear others described as sociopathic or when people like Kevin Champagne call the AutismDiva:
“A RUTHLESS, LYING, TWO FACED SLANDERING MULTI-PERSONALIY BITCH”
Kevin Champagne (scroll to the bottom)
Or when veiled threats of violence are made against people like Kathleen.
then the possibility that such a vitriolic level of loathing really is the norm in some groups.
Wade said I was being ‘inflammatory’ by referring to Lenny Schafer as a bigot. He’s quite right, I was. However, some of the name calling I list above have come from his (Schafer’s) mouth. Whilst he remains one of the loudest voices in the Biomed community I can’t see the level of vitriol and venom from that direction waning anytime soon.
To be honest Elisabeth, I got it second hand myself so I don’t know where the actual post is.
As I understand it, the whole thing is done and dusted anyway but I think its still in some form on the Yahoo AutAdvo group pages.
I was just reading what Kevin Champagne was writing to Autism Diva there, and I have to wonder where he went to medical school. Or psychological training.
Or is he just another person in that field who can’t accept something that glares him in the face and therefore has to rail against it by attacking people in a very vicious way?
I read that the NEO-FFI and the NEO-PI-R developers (Costa and McCrae) suggested that humans are basically rational.
I think I may have found a goldmine of evidence to suggest otherwise… there is nothing rational in the behaviour of these people, and to be honest, it worries me: given the number of threats made by people who profess to be motivated by LOVE, I cannot but think that there’s maybe something amiss with the definitions.
Like the cureby definition of cure: alleviation of symptoms, basically. That is not cure. Cure is elimination of symptoms, and this is the basis of the standard definition as found in medical, psychological and even general dictionaries! Maybe this new definition of love is similarly being distorted…
They’re a worrying crowd, and I wish that maybe more medical practitioners and social workers were to be found nearer-by them.
” I try to hope that it was meant mostly as a sure-fire way to upset me (which it did) and that the sender doesn’t really believe what they wrote.”
I start off by believing that these people mean what they say, and remain of that opinion until they prove otherwise, since the onus is on them.
Speaking of veiled threats of violence:
http://www.autistics.org/hatemail.html
That was also from someone with a Bellsouth address, although I doubt it was the same person given that that’s a common ISP. The authorities were notified but they said that because it was over the Internet, nothing could be done.
Kev
This is great.
I always think I can’t really say anything about autism in general since my particular experience is of Asperger’s Syndrome – not because it isn’t a variant of the same -it is, but it seems the the problems and difficulties seem to be so much less, though I’m increasingly wondering if that is correct or if my thinking has been quite badly influenced by a lot of negative rhetoric Just digressing here 🙂
However, my eldest – great kid, just a bit of a know it all, has been after me for a couple of years about not getting ‘professional’ help with my aspie’s social skills etc. Doesn’t seem to matter how many times I bring up the small matter of iatrogenesis – very real IMO. However, she’s just read that book – “The case of the dog in the night” – or some title like that and lo and behold – she now has some clue that maybe I do know what I’m doing. ( I don’t actually but there is such a thing as knowing that something is likely to be the wrong thing to do).
My point (finally 🙂 is that I think the big disagreement between the Biomed crowd and the Aut Advo crowd is Surprise! – wiring. For people who are instinctively, intuitively, unconsciously socially wired there is an automatic pre eminence given to social relations and particularly social reciprocity. How much of an emotional sock in the teeth do you think the average autistic view of social relations is to a socially wired parent? They don’t just think that we’re totally wrong about not tackling eye contact, physical affection, paying attention in social ways yada yada – they ‘know’ we are wrong and they know this instinctively, intuitively and unconsciously. Never in their wildest dreams could they conceive of deliberately failing to foster the most meaningful aspect of their lives – the social dance. Getting a picture here of the size of the rift? The Grand Canyon ain’t nothing to it.
This BTW is what I mean when I say that theory of mind crosses cultural boundaries with difficulty and neurological boundaries rarely. IMO when Gilberg acknowledged that spectrum folk could be particularly good parents for spectrum kids, he was simply saying that things go better if ToM is not an issue, i.e. when there is not an automatic assumption that there is only one way of being. However, for socially prone parents there is the small problem of persuading them to ignore their entire childhood conditioning in favour of allowing (encouraging even) their children to develop in their own way, which of course looks all wrong.
The best method of doing that is to appeal to what everybody knows about childhood development – get behind what the kid is, not what you think they ought to be. But given what they ‘know’, this is practically impossible.
Alyric – That seems right. But don’t forget: Not only does the child’s development look all wrong to them because of how they’re wired … the child’s unusual development impinges on their social interactions, too.
Look at some of their complaints sometimes – they’re things like “I can’t take my kid out to X”, quite quite often.
Oh man, AB, that’s hideous.
Camille
Jerry Newport was talking about abortion ( a topic begun on the autistic advocacy Yahoo! group, by a member of the EoHarm group, named John Gilmore) and saying that some organizations that
seem to be leaning toward supporting the finding of a gene or genes
so that potentially autistic fetuses could be aborted
were disproportionately directed by people of a certain ethnicity,
which does seem to be the case (I haven’t asked every one of them if they really are “Albanian” but their names sound “Albanian”, and Jerry nows many of them from face to face meeting them… including Lenny S.
Jerry’s wife is “Albanian” and he has friends who are “Albanian” his step kids are at least “half Albanian”….
His point was really that he was angry because if any particular group should be eager to protect the lives of a minority it would be “Albanians”.
Except he didn’t say that the organizations were run by “Albanians”, it was a different group.
Jerry is not a racist.
He did call Lenny at home, but he has met Lenny in person, and who knows if Lenny gave Jerry his phone number in one of their face to face meetings… but Jerry in a fit of pique or something, posted Lenny’s phone number to a public place and later took it down.
That’s the Jerry controversy in a nutshell. No pun intended.
Oh, and Jerry said he tried to call and apologize, or did call and apologize to Lenny for the phone number thing.
Ive just seen what the other Kevin Cs comments on autismdivas site.
That in its self is scary, and is just… mind blowing how someone can be such a twat.
lol@ ‘Albanian’…
Kathleen has filled me in (Thanks Kathleen) I could do with a rolling eyes smiley here but will make do with a ‘Oh for Heaven’s sake!’ instead.
I just went and read the stuff Kevin Champagne wrote on Autism Diva’s blog, and some of the other threats and innuendoes that were mentioned here….
These people SCARE me. They truly, genuinely, profoundly frighten me. And these people who spew vicious curses and make vile threats are actually raising children?!
I don’t know, but the whole thing is just deeply disturbing on many levels.
That’s one of the frightening things to me, yes.
Another was well put by a parent. She said that she was going to stop reading a certain list on which autistics were being vilified and attacked. In giving her reason, she said “Just imagine your child’s name in the place of any of the autistic adults’ names, and you’ll see why I can’t stomach it anymore,” or something like that.
I often wonder if people realize that the hate they spew may well be spewed at their own children as adults, when they say something that the next generation of parents disapproves of.
I often wonder if people realize that the hate they spew may well be spewed at their own children as adults, when they say something that the next generation of parents disapproves of.
I don’t think they do. They genuinely believe that the chelation they’re doing will ‘cure’ or ‘reverse’ their kids, irrispective of that dual facts that they don’t treat with chelation in isolation of other treatments and that all kids progress anyway.
In short, they believe their kids are ill with a tragic, love stealing, future killing disease from which they will move heaven and earth to save their kids from. A realisation that their kids may well be the AutAdvo population of tomorrow would necessitate acceptance of their kids as both autistic and ‘incurable’ or ‘irreversable’. I think we all know that for a lot of these people thats simply not an option. In time, as their kids get older some of them will come to realise it but some never will. Some enjoy the politics and despots power far too much. Its become more important to them than their kids. When people take more time over public ‘outings’ of opponents on fever-pitched mailing lists than they do discussing the subject matter then you know things are seriously off-kilter.
We’re culturally trapped in the dual grip of advanced medicine and a fast-food mentality. Our kids are different. Different is bad. We expect a cure. We want it now.
By-products of this include intolerance for those who don’t want to tackle everything at 100mph and hatred for those that remind them that there is a dark underside to the sometimes rabid zeal with which they pursue their goals.
Kevin Champagne in a less vitriolic mode.
“We’re culturally trapped in the dual grip of advanced medicine and a fast-food mentality. Our kids are different. Different is bad. We expect a cure. We want it now.”
You don’t know how correct you are, mate! Chuck in a bit of Austrian megalomaniac and you have Reich-III. That is a frightening thought. These were the same factors that manufactured deep hatred against Jewish people in Europe between the wars.
I’m with Amanda on this: these people frighten me, too.
I think that Kevin C had a meltdown, a sort of emotional seizure, from Autism Diva flashing the red warning light in his face.
I feel bad for Kevin C. He is hopeful that he has at last found a way to help his son, after the ABA and special diets didn’t work and the behavior mod program made his son a screaming mess. He took the summer off work to be with and help his son. He flew to New Jersy and met with Rashid Buttar, in a hotel no doubt, to start this new treatment. Dr. Buttar apparently is not licensed to practice in New Jersey, nor is this new treatment FDA approved, but Kevin C. is going for it. Undoubtedly Dr. Buttar has assured him that it is perfectly safe and that Buttar has seen children have their autism reversed by using it. Kevin C. would like to go forward with a positive attitude. After only two months on the 18-month regimen, he has seen “a huge difference.” He doesn’t want any naysayers bringing him down. I’m sure he feels supported by Pat Sullivan, who is using Kevin’s story to flog his own book.
I have heard mercury parents say many times, “If only they had warned me of the danger! I never would have vaccinated my child!” It turns out that it is not so easy to warn people when they are bent on a certain course of action. Autism Diva is in their face yelling about the danger, about the misinformation, about the potential for fraud by chelation providers. Kevin C. and others in his position feel that Autism Diva is working *against* them and their children, when the exact opposite is true. I am glad that Autism Diva is willing to cast a critical eye on all this despite the lack of gratitude, to understate it wildly, she receives.
I, too, worry about the uncontained rage I see (and hear, when they leave anonymous voice messages) from parents who see any sign of skepticism about their chosen treatment as a threat.
What impresses me is the disproportionate reaction.
After I said that there is no evidence to connect mercury with autism, I had people threatening my car, home, and children. I have received death threats (all duly reported to the police) and innumerable nasty and vulgar e-mails.
This seems a bit overdone in response to a simple statement of how I see the scientific data. What would happen if I made a really strong statement? I shudder to think.
Given the level of the rhetoric from the proponents of the mercury-autism connection, it seems more than a bit hypocritical for them to point fingers at the “neurodiversity” movement and accuse them of bigotry or abuse because of the actions of a few (or one) people in a moment of pique. Considering the number of “loose cannons” on the field, it might be better for both sides to ignore the occasional outburst.
That said, there are people who have repeatedly been abusive and vulgar toward their “opposition”. These people need to be reproved and, if necessary, ostracized by the people on “their side”, not encouraged and excused.
Jim Laidler
Re: the death threats, I’ve been getting those since well before I said anything remotely “strong” as a message. (Of course now my messages are quite a bit stronger than when I first started writing publicly.)
I do find it alarming when people resort to that level of nastiness. It’s a whole level above just being mad at each other — an illegal whole level even.
I find it interesting that many people have recieved death threats. That I can’t in any way understand – it’s not like the skeptics (myself included) are keeping people away from doing what they are doing.
I haven’t received any death threads, and have recieved more emails on my anti-Intelligent Design stance than I have on my pro-vaccination (or rather, anti-thimerosal/autism link) stance. Part of the reason for this might be a simple fact of being less involved in this than the rest of you, and part me because I don’t live in neither the US nor the UK.
Creationists don’t give death threats.
They just smirk at you about how you’re going to hell.