Archive | 2007

David kirby plays the segregation game

3 Jan

A truly fascinating start to 2007. David Kirby writes a blog entry entitled ‘There is no autism epidemic’. Why is it fascinating? Two reasons. Firstly, it reveals the lengths David Kirby is willing to go to shift goalposts even further. The entire entry is replete with strawmen arguments. An example – in his opening paragraph, Kirby talks about being vilified by people who who believe that autism is a stable genetic condition and then names the neurodiversity community as amongst his most spirited detractors.

Nobody I know who shares the opinion of neurodiversity believes autism is *only* a stable genetic condition. However, unless we want to throw out what we know about Rett Syndrome then we do have to accept that some of the spectrum of autism is indeed a genetically based condition.

He further describes neurodiversity as a ‘group of adults with autism’. Again, nowhere near accurate. As I wrote about only yesterday, neurodiversity is not specifically associated with autism, neither is it anything other than a fairly nebulous opinion shared by people who think respect and equality matters. Neither is it an opinion not shared by people who are parents of autistic children.

Here’s how Kirby sums up ‘the neurodiverse’:

Most of them, I believe, have what science calls “Asperger’s Syndrome,” or very high functioning autism. From their eloquent and well reasoned point of view, autism has no “cause,” and it certainly requires no “cure.” To suggest otherwise is to brand these adults with the stigma of disease and disability, which is patently absurd given their educational and intellectual achievements.

No.

Time and time again, the people I speak to who are autistic and who are sharers of the opinion neurodiversity expounds tell me that as children they either were not diagnosed at all and left to rot or diagnosed with low functioning autism. How do I know this? I asked, Mr Kirby, and then I listened to the answer. I didn’t make up any old opinion that suits my argument better. Some, like Amanda Baggs, still _are_ considered low functioning. My Great Uncle was ‘low functioning’ and my Great Aunt was ‘high functioning’ – both were born way before thiomersal was ever around by the way. My Grandma said that her brother-in-law was ‘much worse’ as a child than as an adult. As adults they were able to converse.

The first part of Kirby’s post sets up the second. He is attempting to dismantle the idea of the autistic spectrum and at the same time, corral all ‘the neurodiverse’ into a place where they cannot speak about autism. Here’s the filibuster part of his post in full:

But if that’s autism, then the kids that I have met suffer from some other condition entirely. When I talk about “curing” autism, I am not talking about curing the “neurodiverse.”

I am talking about kids who begin talking and then, suddenly, never say another word.

I’m talking about kids who may never learn to read, write, tie their shoes or fall in love.

I’m talking about kids who sometimes wail in torture at three in the morning because something inside them hurts like a burning coal, but they can’t say what or where it is.

I’m talking about kids who can barely keep food in their inflamed, distressed guts, and when they do, it winds up in rivers of diarrhea or swirls of feces spread on a favorite carpet or pet (no one said this kind of “autism” was pretty).

I’m talking about kids who escape from their home in a blaze of alarms, only to be found hours later, freezing, alone and wandering the Interstate.

I’m talking about kids who have bitten their mother so hard and so often, they are on a first name basis at the emergency room.

I’m talking about kids who spin like fireworks until they fall and crack their heads, kids who will play with a pencil but not with their sister, kids who stare at nothing and scream at everything and don’t even realize it when their dad comes home from work.

These are the kids I want to see cured. And I don’t believe they have “autism.”

Woah! My daughter very rarely speaks, she’s just on the cusp of learning to write, she can’t tie her shoes, she wakes up regularly in the night (on New Years Eve she got up at half past midnight – not 3am) but she is distinctly burning coal free, she tolerates certain foods very well and refuses to touch other foods, she used to smear faeces regularly on both the carpet, the walls, her bed, us, the cat and she’s had the odd bout of diarrhoea (no one said autism was pretty, right?) – she’s pulled out of my hand on occasion and ran and I’ve followed, heart in mouth, she sometimes has the odd pinch or smack at me if I’ve told her she can’t have something, or I’m not getting what it is she wants, she loves to spin – and bounce (have you see my video Mr Kirby?) and she used to be non-social completely.

So yeah, I know what you’re talking about. Guess what? Its still autism. I still love her just the way she is. I still don’t want to change anything about who she is. I’m happy for her to be autistic.

Here’s what *I* think.

I think you’re goalpost shifting again Mr Kirby. You don’t believe they have autism? So what was the last two years about? Why the constant harping on about the CDDS until it stopped showing you what you wanted it to? Why the sudden panicky need to dismantle the idea of a spectrum of autism? Why redefine? Is redefining easier than explaining why your hypothesis isn’t panning out?

And what’s this about?

Asthma, diabetes, allergies and arthritis are ravaging their bodies in growing numbers

Sounds suitably scary but a) has nothing to do with autism and b) would appear to be partly wrong. And what about this:

There is something, or more likely some things in our modern air, water, food and drugs that are making genetically susceptible children sick, and we need to find out what they are.

Wow, is this an admission of error? From stating a belief that thiomersal caused autism you are now suggesting that ‘some things’ are making ‘children sick’ – that’s quite a change of heart. Why? Is it so hard for you to say – ‘guys, I was wrong. Back to the drawing board and I’m sorry you wasted your hard earned dosh on my book’.

Here’s something for you to read on the subject of neurodiversity Mr Kirby, I hope the point doesn’t escape you.

On May 19, a small group of people with Down Syndrome and their supporters disrupted the International Down Syndrome Screening Conference at Regents College in London. This is the first time that people with disabilities have spoken out publicly about prenatal screening. Their protest opens up the debate about genetics, eugenics, and the rights of disabled people.

As a result of the protest, the conference organizers allowed Anya Souza to speak from the podium, a platform her group had previously been denied. Ms. Souza, a trustee of the Down Syndrome Association who is labeled as “suffering” from the condition herself, told the doctors why she opposes the screenings.

The protesters found it unacceptable that doctors would discuss better ways of preventing the birth of people with Down Syndrome while excluding the voices of people with that label from the debate. That runs, they said, directly counter to one of the main demands of the disability rights movement: Nothing about us without us.

“We are what we are,” Gilbert [another protester] concluded. “Ask our opinion.”

Do you get the point(s) Mr Kirby? What you are doing by pretending that AS and autism are two different things is taking away the opinion of autistic people. You are doing it without evidence that you are right, without anything other than a ‘hunch’. An MO that is becoming more than a little familiar. You are following the proud tradition of Lenny Schafer and Rick Rollens, who also want to stop autistic adults talking about autistic children being OK just as they are.

Be brighter than them Mr Kirby. Try and understand that no one advocates letting kids suffer painful medical issues but that these things do not, and never did, equate to autism. What you’ve taken away over the last two years from both these adults and the kids of those you call friends and those you don’t is dignity. Nothing about us without us.

Update: Kristina weighs in too and Joel writes a first class piece on proving one is broken. Diva gives us good instructions and spotting autistic people and Do’C and Jospeh ferries across a river of shit.

‘The neurodiverse are everywhere!’

2 Jan

I read an email from the chelating2kids Yahoo Group where ‘the neurodiverse’ are described as being everywhere. Its almost apocalyptic in the way it describes the way this poor mum feels alone in her local area and deluged under the weight of the online neurodiverse websites/blogs etc.

Of course the responses come thick and fast, just ignore them, you’re OK, they’re mad. etc etc. But it struck me that these people really didn’t get it. They’ve bought into the mercury militia definition of ‘the neurodiverse’ as a set of people who want autistic kids to remain undeveloped, uneducated, unhelped and institutionalised. To them, *everyone* who doesn’t follow a strong Biomed path is one of ‘the neurodiverse’. And that’s why they (the evil neurodiverse) seem to be everywhere – its because they are!

We have to get a bit of reality into this situation. Firstly, I appeal to anyone who’s ever used the term ‘the neurodiverse’ to think about what you are referring to. You are referring to an artificially constructed, non-existent entity. There are no such people/thing/entity as ‘the neurodiverse’. There is a concept called ‘neurodiversity’ which some people like the sound of but it is not like a political affiliation or religion or sports club – no member record exists, no fees are collected, no policies are decided upon. Neurodiversity is, at its essence, an opinion that all people, regardless of neurological setup, are of the same amount of worth and due an equal amount of respect.

Does that sound particularly scary to you? Do you not believe that a person who is Down is deserving of equal respect as someone who is NT? Should a person who has learning disabilities have inherently less worth than someone with none?

That’s neurodiversity. At the nucleus of the concept is the idea of equal worth and respect. Why does that fill you with horror?

You should also note that neurodiversity is not something confined to autism and even more importantly, it is not any kind of response to the anti-vaccine based hypothesis of autism causation. ‘The neurodiverse’ are not about you. They are not a response or a reply to you. They do not stand opposite to you. The ideology of equality and respect existed before your hypothesis and will continue to do so after your hypothesis is gone.

In reality, ‘the neurodiverse’ are *anyone* – including you – who have ever stood up for the rights of themselves or the rights of their children/siblings/grandchildren to have the same opportunities as everyone else. Did you fight for your child s educational rights because you thought they deserved the same opportunities as everyone else? Pull up a chair ‘neurodiverse’! When you hear about an autistic child being bullied does your blood boil about the lack of respect shown to that child? That makes you ‘neurodiverse’.

Where the actual set of people who like the idea of neurodiversity differ from you is where the basic idea of respect takes us. When you hear about a child being bullied, I think you feel the answer to that problem is to cure the child s autism. For people who are consciously aware of neurodiversity, they feel the answer to that problem is to alter societal beliefs to make it unacceptable to bully children who are not NT.

Or lets use an example closer to home – biomed. You think ‘the neurodiverse’ don’t want you to treat your kids and don’t want your kids not to be autistic. No. What they want is to reach a place where the unique strengths of autism are recognised and the weaknesses are assisted. When that occurs, it would seem silly to desire a cure. If, in the meantime, your child has genuine medical issues then address them. If, in a hypothetical situation, the alleviation of your child’s medical symptoms somehow results in the disappearance of your childs autism then so be it. Whats the issue here? If a child of mine developed cancer and if someone developed a cure for cancer that had the side effect of eclipsing every mote of my daughters autistic nature, believe me, I wouldn’t think twice.

Often I hear how strong you believe you are being in taking an extreme biomed option. That the use of chelation, Lupron, HBOT etc means you are being strong for your kids, exhausting every option. I don’t see it like that. I think you are essentially good people who have been shocked into a world you know nothing about (autism) and want to get out of that world as quickly as possible. I think you adore your kids and want the best for them. I think you are being taken advantage of by money and ego grubbing quacks.

In the first instance I would like to invite you to stop and look around the world you are now a part of. Don’t deny the bad, but also – don’t shut out or deny the good. On balance, right here and now, is *autism* so bad? Not the gut issues, not the faeces smearing, not the hassles with schools, but your autistic child. Is it all so bad? Is it unremittingly negative? No good points at all? Not even the pleasure of watching your child progress?

Secondly, I think you are badly mistaken in seeing autism and gut issues/smearing/schooling issues/meltdowns as interchangeable. My daughter is low functioning (but how odd it is that I only think of her in that way when I talk with you) and has experienced all the issues you relate. Seriously, all of them. But that was three years ago. Those things are gone or going. My daughters autism is not. She’s not ‘better’ in the sense I think you mean it, she’s not ‘less autistic’, but in exactly the same way as your child, she is not the same as she used to be. She’s growing. There’s no scale for this. It won’t happen uniformly. I don’t want to hold up an NT state of normality as a ‘goal’. She’s already indistinguishable from her peers – her peers are autistic.

Thirdly and most specifically in your case is the mercury/vaccine issue. I realise how much of a relief it can be to have something to blame when you are in a situation you have no knowledge about and are scared of. However, its only by seeking knowledge that fear of the unknown can be addressed. Knowing the unknown in this case means reading the words of autistic people.

The treatments and situations that I sometimes read about are really alarming. I read an email from a young mother who wanted to chelate a 9 month old baby because it was ‘smiling inappropriately’! I read the replies expecting lots of messages of horror and instead read instructions from non-medically trained people on how to do this. No one thought to say – ‘its probably gas, try winding for a bit longer’.

Your mainstream doctor is not part of any plan to control you via vaccines. They say that there is no risk of vaccines causing autism because it is the truth. No one wants to hurt your kids. Why would any doctor or nurse desire to purposefully hurt your kids? The only people who profit out of perpetuating this situation are the people you give money to for expensive tests and even more expensive treatments. Am I saying mainstream doctors know it all? No I am not. In frequent cases its clear mainstream doctors are woefully ignorant about autism and the needs of autistic people. Its never going to get better if you simply walk away.

‘The neurodiverse’ are everywhere indeed, if you define ‘neurodiverse’ as anyone not into biomed. I would hope that respect, equality and education – what I think of as the core attributes of neurodiversity – are also everywhere. I am not trying to make you realise how small the vaccine based hypothesis of causation is – I think in your heart of hearts you already know, but rather that this isn’t a competition. Its not about numbers. Its about reality and the need to fight for the respect and dignity of everyone to be the person they are without feeling like a second class citizen.

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