What Neordiversity Ain’t
October 14th, 2007Right now, I’m seeing the word “neurodiversity” thrown around on the blogsphere, and I’m reminded why I don’t identify as “neurodiverse” or with the movement.
I have no problem with the concept as Larry Arnold describes it. But I do have a problem with the way some people describe it, especially when it relates to the war between the anti-vaccine (or anti-some-vaccine) crowd and the pro-traditional-science crowd. To people heavily involved in this war (which I truly believe to NOT be the most important thing we should be fighting for right now – ending institutionalization, heck, getting people to recognize institutions exist in their countries – is far more important, and kills literally tens of thousands more kids and adults than will ever be killed by chelation or even the anti-vaccine propaganda), neurodiversity is about what side you’re on when it comes to vaccines.
It ain’t about vaccines though.
You see, there are literally thousands of parts to neurodiversity. Desiring good science certainly is a part, and in this part, neurodiversity sides very strongly against the vaccine causation theories and related treatments of autism – for good reason. Not receiving vaccines can and does harm people, and can even be a contributing cause of death (I’ll also add that the MMR vaccination is one of the only preventative measures for autism that is well accepted by the neurodiversity community – you see, the “R”, rubella, in a pregnant mother is one of the very few known causes of autism).
In addition, untested and dangerous therapies, conducted illegally (insurance fraud is illegal and hurts people filing legitimate claims), do great harm. This includes everything from behavioral programs claiming to have a fantastic “cure” rate to chemical castration drugs prescribed to young boys to mega doses of vitamins (such as recommending exceeding toxic levels of selenium) to intravenous chelation. It also includes – but is rarely talked about – much more “mainstream” therapies and treatments.
Temple Grandin, who is known, in addition to being autistic, for her work in designing humane cattle handling facilities talks about, in Animals in Translation how her equipment, which is great equipment for handling cattle, can be misused and poorly maintained, resulting in animals being abused. It’s not just the equipment that is important in humane treatment of animals. No, it’s much more. The right treatments and interventions (oh, how I hate the medicalization of autism!) are important – that’s the right “equipment”. But the equipment isn’t enough. It also needs to be done rightly.
I was never chelated. I never had mega doses of vitamins. I received all my recommended vaccinations (and just recently got a flu shot – with thimerasol). No insurance fraud was conducted to “treat” me, ever. I was not chemically castrated. I received the best speech and occupational therapies of the day, the best special education money could buy, the best inclusion possible. In fact, I received several hours (yes, hours) of speech therapy twice a week – imagine that happening even today in most school systems, for any kid. I received social skills training and had peer mentors to help me learn how to interact. But with all of that, there was great abuse. I had great harm done to me, and outside the occupational therapy, I don’t know if any of it did any good. But many of these things are still the “gold standard” in educating autistic people, even today.
So how could I have received the right “treatment” (or, using the analogy, had the right “equipment” used), yet not been helped? Not only wasn’t it helpful, but much of it was harmful – just as harmful as if I was injected with a chemical castration agent, in fact. Just as likely to cause death (a second grader should absolutely not be actively trying to kill himself – if he is, it’s a very clear sign something is very, very, very wrong with his environment – and if a bad environment driving a second grader to want to kill himself isn’t likely to cause death, I don’t know what is).
So, neurodiversity isn’t just about having the right buzzwords and avoiding the wrong ones. It needs to go deeper then the buzzwords. Way deeper. And it needs to include reaching into all areas of the environment. It needs to end abuse at the hands of other kids, for instance (“bullying”).
But, also most important: Neurodiversity ain’t about autism. It’s not about autism. Yep, I said that right: Neurodiversity ain’t about autism!
That’s why the chelation issue, the science behind different autism treatments, and such is such a small part of neurodiversity. Sure, it has a place inside the neurodiversity movement, but the movement is huge. Nobody would claim the Democratic party (in US politics) is defined by whether or not US-287 between Laramie, WY and Fort Collins, CO should be a 2 lane road or a 4 lane road. Yet I’m sure the Democratic party has an opinion on it, and hopefully that opinion relates to the principles that guide the party. In the same way, Neurodiversity can and should have an opinion on chelation, based on the principles of the movement. But it isn’t the movement. It’s just one part.
There are many, many, many non-typical neurologies other than autism. Some of these neurologies have issues that autism doesn’t, such as the easy availability of a pre-natal test to determine whether or not a baby should be aborted, based on whether or not the baby has exactly the “right” number of chromosomes. For the most part, that doesn’t yet exist in Autism. But is it not just as big of an issue as chelation? It certainly is to people with Down Syndrome! But, like vaccine causation theories of autism, pre-natal testing for Down Syndrome doesn’t define neurodiversity either. But it is a part of it, from the principles of the movement.
But when you get down to it, it’s the principles that are important. And I’m not sure everyone that currently identifies with “neurodiversity” even knows what those principles are. The movement has been derailed into a very narrow, one-issue agenda. We have to get the word out that the movement is bigger than vaccines, chelation, and biomed.
The neurodiversity movement is about the respect and human rights of all people, particularly focusing on the human rights of people with non-typical neurology. That’s a huge area, with a lot of ground. There are some very big issues however that concern everyone in the movement personally – such as the previously mentioned institutional issue. Access to medical and educational services is another huge issue. Forced drugging is another massive issue. Some of these, I venture to say, are even bigger than chelation. Until we focus in a united way on these issues, I fear that all sorts of non-typical people are going to continue dying. I don’t want to just save the kids that will die from chelation – although certainly, that’s very, very important. But we also need to save the people – tens of thousands a year, very likely – that are dying because of institutions, lack of access to medical care, suicide, lack of appropriate support, and targeted hate crime. And starting on this yesterday is too late for some.
…The neurodiversity movement is about the respect and human rights of all people, particularly focusing on the human rights of people with non-typical neurology. …
As a person who is a member of a family with many different types of neurology, I totally agree. We will be stronger if we all realize that there are a lot of issues that affect all of us, and support each other in issues that only affect some of us.
Joe
DEFINITELY.
This is exactly what I always thought neurodiversity was about – the need for acceptance of, and respect for, all people, regardless of difference.
I find it incredibly confusing when people say they are pro-neurodiversity and then eliminate some groups of people from their list of who’s acceptable.
The disconnect doesn’t work for me, and it never has. It’s a double standard, and I hate that sort of thing with a passion.
In the end, I think it’s incredibly important that everyone who identifies with the proper definition of “neurodiversity” find their focus and have at it. For some, that will be institutions; for others, appropriate medical care; for still others, it will be education. And so on. I know that my own focus centres around the importance of effective communication and the need for respect, regardless of diagnosis/”functioning level”. All of these different foci can work together, but it’s important that people be inclusive of different foci even as we work towards the inclusion of all people. Focusing on one area (biomed, ABA, autism, whatever) to the point that people feel uncomfortable bringing up another topic is detrimental to the movement as a whole.
And I will stop there, as the box is very small and I’m basically writing a post and can’t remember if I’m maybe repeating myself or just ceasing to make sense.
Castration? What’s the reasoning behind that one?
I agree wholeheartedly with your post. This reminds me of the way that some people in the alternate sexuality community focus only on their part’s interests, such as gays and lesbians ignoring transgendered people.
I agree with this. While I may focus on ASD blogs and sites, neurodiversity is exactly that-diverse. There are many different conditions, and many are treated with inhumane therapies, all designed to make it easier on the society people are born into.
I remember growing up with “special ed” kids who not only spent a few hours in “special ed” classes, but who also took classes with the supposedly “normal.” Where are these people now? People with Downs Syndrome seem rare and I know why, but I miss those people. I can’t seem to put into words why without sounding obnoxious, but they seem to have a joy many “normal” folks don’t have, and seemed to be in the moment more than most people.
But now most aren’t even allowed to be born, because they aren’t “perfect.” We all have our problems, and I think we lose our humanity when we limit or try to force people’s behavior into a norm. We are in danger of becoming a homogenous people without any real freedom at all.
Metta.
And i agree to!
Well written and well said!
Well Said! I absolutely agree. What Joe said struck a chord with me also.
“Neurodiversity ain’t about autism!”
Finally, someone said it. Thank you!
Great post, Joel, as always.
To be fair, Larry and others have said it before, but it’s an important point. Neuro-diversity is about diversity of neurologies.
“some people in the alternate sexuality community focus only on their part’s interests, such as gays and lesbians ignoring transgendered people”
Gays, lesbians, bisexuals, and transgendered individuals are lumped together. Polyamorous and asexual people are sometimes included as well. The thing is, transgenderism is not a sexuality like the rest are. To be transgendered (in the broadest sense) is to feel that your body and brain don’t necessary match up–it can be everything from enjoying gender play (pretending to be the “opposite” gender) to having sexual reassignment surgery. My trans friends range across the spectrum of sexualities, from completely straight (liking the “opposite” sex from the sex they feel they are) to pansexual (liking just about everything and everyone) to asexual. I think it was ignorance about gender and sexuality–and a healthy dose of the belief that there can only be two genders–that brought about the inclusion of transgenderism into the glbt “spectrum,” as it were. Also, we like them and sympathize with them. We are hated by the same people, and often go through similar coming out experiences. A significant percentage of people who are gay/lesbian/bi are also trans, and vice versa.
This isn’t a very common stance in the glbt community, I do admit, but I think it’s more because it’s just not something that people think about–much like how the idea that neurodiversity is more than just autism isn’t something a lot of us who hang around on autism-related blogs think about.
Sorry, I just had to debunk that bit of common thinking.
Thank you. My 7-year-old has agenesis of the corpus collosum and both of my kids have been formally dx with pdd-nos. Because my kiddos are ‘atypical autism’ (in the sense that people always deny their diagnoses), I was getting really frustrated with my opinions being dismissed (not online) because my kiddos aren’t “one of those kids” (which has been said to me by my own father and is one of those phrases I think is hurtful in so many ways). I think my older son having ACC really shaped my opinions since nothing we would ever do or not do would change the fact that he has no CC. I have a lot of auditory processing issues, OCD/anxiety and if there is such a think, I focus way too much on nonverbals (to the point where it causes me great distress). My hubby is classic impulsive ADHD. We are quite a family. I have no idea if we are NT or not. Really, I don’t care.
I should add that I do care very much about the principles of diversity, but what I do to work towards what I believe isn’t defined by whether or not my kids do or don’t have autism or if I am NT or not. The entire autism movement has frightened me awhile back because of the way it has taken away from the larger in-whole disability issues (such as institutionalization, which you brought up). I guess technically I must care somewhat or I wouldn’t have posted… sigh.
Very nice post Joel. Thanks for trying to put neurodiversity in some perspective. Not mind you that it will do much good. The Harolds of this world and their acolytes have a vested interest in pigeon holing the ND crowd (ie whomever disagrees with them) in whatever slot they think will do the most harm. Harold of course is campaigning tp institutionalise autistics. Rather interesting to see the people he approves of.
I understand that trans isn’t a sexuality, and may have worded it poorly, but they do face similar challenges and prejudices in our culture, which is why they are grouped together as GLBT.
Logically, I agree, there is no reason for trans to be considered part of the GLB group. Trans is part of a sort of “gender spectrum”, while GLB is part of teh “sexuality spectrum”.
If the statement ” Logically, I agree, there is no reason for trans to be considered part of the GLB group.” then *why are* they, at least superficially included as the T in the GLBT. Having been born with a rare intersexed condition that caused us to appear VERY androgynous despite being fundamentally female, we were thrust onto the “gender community” stage by default. We subsequently became very actively involved in the struggle for Trans inclusionin the GLB support/activist community. Through very many years of educational efforts in GLB support forums, speaking to psych. classes at colleges and med. schools, and participating in documentaries and still studies, we and other gender folk finally got our message understood: In this culture when we live lives that our true to our spirits we all are deemed “gender outlaws” by the dominant culture whether we are G, or L, or B, or T. A G-man holds his partner’s hand as they walk through the mall… that’s a GENDER TICKET. A L-woman romantically kisses another woman on the street corner…. that’s a GENDER TICKET. A B-woman/man makes love to a person of the same sex…. that’s a GENDER TICKET. A T-person in transition dresses in clothes consistent with their gender identity ( but opposite what is expected by gender norms for their physical sex)…. that’s a big GENDER TICKET. So it would appear that “logically” there is indeed a very fundamental reason for “trans to be considered part of the GLB group”. We find it very sad that in fact the GLBT unity finds its basis in the NATURE of the disapproval of the dominant society. We are not implying that the GLBT community has choosen this uniting factor, but rather that it is an unfortunate consequence of forming this advocacy alliance.
I’m not sure I understand. You sound like you’re disagreeing with me, but the things you’re saying are precisely what I just said.
Or is it that you misunderstood me to be saying that T shouldn’t be included in LGB? What I meant was simply that there was no FUNDAMENTAL reason for the alliance, that it was an alliance born of similar prejudices being faced
Yes, we are disagreeing with you; and No, what we are saying is NOT PRECISELY what you said.
You stated:
“Trans is part of a sort of “gender spectrum”, while GLB is part of teh “sexuality spectrum”.
We are stating that they *ALL* are part of a (to use your words) “gender spectrum”. And we would clarify “gender spectrum” to mean a gender-based minority group; specifically gender outlaws.
We are sorry that is the best we can do to try to explain it to you. We do not wish to diverge any farther from the point of Joel’s blog and we are a *very* slow typist, but if you woulkd like to speak about this further we would be open to that. And we do realize that this concept may be difficult to understand if a person has not spent their entire life as one, or some, or all of the subcategories of GLBT (our psychologist has to remind us of this at least once a week and “to be patient with them, Alauda”)
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