*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?
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