I think a lot of people operate under the misconception that there is this group called ‘NT’ and this group called ‘ND’ and that all in the ‘ND’ group are the same as each other. Not so. The way I was taught to think about neurodiversity is that it is comprised of a group of people with differing neurologies. So to me, anyone who’s difference is primarily stemming from a neurological difference belongs in that wider grouping. Autism. Schizophrenia. Learning Disabilities (retardation in US-speak). Tourettes. OCD. Bipolar. Blindness (where the blindness originates from the optic nerve). Down Syndrome. Epilepsy. Dyscalculia. A hundred more I can’t think of right now.
Autism is not the most or the least of these subgroups encompassed by neurodiversity. It’s simply one amongst many.
This is what I was taught about neurodiversity and this is what I hope it is about. If it isn’t then I have misled an awful lot of people over the last 3 years, including myself.
I carry one of the diagnosis’ listed above. I have type 1 rapid cycling bipolar disorder (Wikipedia). The first time I can remember feeling that I was decidedly different in outlook, thought patterns, behaviour and generally _being_ was when I was about 9 – 10 years old. However, I have not carried an official diagnosis anywhere _near_ as long as that. I’m nearly 40 now. 25 – 30 years ago, just as with autism, there weren’t the same amount of diagnostic specialists who knew the signs and symptoms. Meh. Such is life. It’s well managed now which is a massive relief.
I don’t want to wallow in myself too much but I want to provide some context for how I feel about neurodiversity and how I felt last week when everything kicked off.
Occasionally – and not very often – I may need to take a neuroleptic. These are serious drugs, administered (hopefully) with great care. There are very good reasons why they should be prescribed as an absolute last resort to autistic people.
That said, for people with _my_ neurology they are sometimes necessary.
I had an email exchange last week with someone who put forward the idea that the continued use of neuroleptics to autistic people was an issue of great importance that needed to be discussed. This is something I entirely agree with. My own medication is carefully reviewed every 2 months. I hate taking pills and the less I have to take, the better.
In the course of this exchange, the phrase ‘brain damaged’ was used in a way that seemed to indicate to me that those who may have to use neuroleptics have damaged brains. I was somewhat taken aback by this. My immediate association was the idiotic null comparisons of John Best of autistic people having ‘rotting brains’. It seemed to me that using overly inflammatory and denigrating language such as this was not a good way to promote the idea of neurodiversity. I fully accept that neuroleptics are far from ideal and that there is good emerging science to indicate chronic overprescription of neuroleptics to autistic people but the use of the phrase ‘brain damaged’ was a step too far. Was this really how this person saw me?
I don’t think that this person meant to be offensive in any way. But let me tell you a story.
My grandad (now dead) served in WWII and had a British Asian man in his regiment. My grandad used to refer to him as ‘Chinky Charlie’ until one day I asked him why he was called that – it was then I learnt that ‘Chinky Charlie’ was of Chinese descent. His other nickname was ‘Yellow Charlie’ apparently. I was really shocked and told my grandad that I considered that racism. I asked him what ‘Chinky Charlie’s’ real name was – he couldn’t remember. But he said ‘he didn’t mind – he laughed it off’. I’ll bet he did. What option did he have?
My grandad didn’t _mean_ to be racist. He wasn’t intentionally trying to denigrate his fellow soldier in terms of his race. He also told me what a deep respect this man carried amongst the regiment. However, the intention – or lack of it – is irrelevant. He _was_ being racist. He was characterising someone on their race. He couldn’t even remember this guys actual name!
I hope my point is clear. Words matter. Their intent may not be to offend (its easy to tell when someone is purposefully being offensive) but if neurodiversity truly is an umbrella community for a wide variety of differing neurologies as I thought it was then care is needed. We don’t have to tip-toe around each other (that would just become a PC nightmare) but the willingness to not generalise and not use comparisons that a truly ignorant man like John Best would use are not only necessary but vital.
Left Brain Right Brain 
Just a lurker de-lurking to comment.
Part of what I like about the word ‘diversity’ is that it includes, well, everyone. It would make the most sense to me if neurodiversity, as a word and concept, included those who are considered neurotypical, as well. If there is no judgement going on, which I know is incredibly difficult for us to do as humans (so I understand why many might resist such a broad grouping), it seems that the ‘typical’ people are just one more subset in the ‘diverse’ group. So then neurodiverse becomes a word to remind us that we are all humans, and no matter what our different brain and neurotic chemistries, we deserve love and equality and respect.
That seems like the most humanitarian definition it could take on.
Excuse me: I am brain-damaged by neuroleptics. This is not an insult, it’s a term I have been using to describe myself for ages. I take my cues in this matter from other psychiatric survivors (some of whom have the same neurotype you do, for whatever that’s worth, although in that movement we don’t tend to differentiate as heavily between neurotypes), and from people I’ve known who had brain injuries and were fed up with the PC changing of terminology from “brain-damaged” to “people with brain injuries” to “people with closed head injuries” and so forth. (The latter two of which actually tend to exclude people whose brains were damaged by things other than being hit on the head.)
Just as I’ll also refer to myself as crazy at times, which I know riles a lot of people among the NAMI-like “anti-stigma” brand of psychiatric “consumers” who want to talk about having “neurobiological disorders” or whatever the latest PC term is, but which has a specific political and cultural meaning among mad pride/psych survivors/etc. There’s two books supposedly about the rights of psych patients and people likely to become them, one of which is called “Don’t Call Me Crazy” and the other of which is called “Call Me Crazy,” and I bet you can guess which side I’m on.
Additionally to all of this, my use of language is heavily echolalic, by necessity not by choice. You caught me in a phrase I’d learned as a whole phrase (not as a single word), and proceeded to infer all kinds of things about what I meant about you personally based on that whole phrase. You seemed to think that it was offensive — just absolutely was, no questions asked — to anyone who voluntarily took neuroleptics, even though I’m a person who has taken neuroleptics on an absolutely-voluntary basis in the not-distant past. You never did explain to me how it is that I’m supposed to be insulting myself here by not having the most pristine and delicate of word choices, but you did insist that I was (since I’m among the class of people you said were absolutely insulted by this, even though I know plenty of other people within that class of people who’d disagree with you here).
Even if I didn’t have plenty of political justification for using words the way I do (which in this case I do), I get tired of people reading things that aren’t there into my echolalia and insisting I mean things I don’t mean.
Next thing you know I won’t be allowed to describe the damage Prednisone does to my system in as vile terms as possible because it might offend other people who are on Prednisone.
So, no, I don’t want to set out to offend people. At the same time, I have a real problem with the insistence on certain terminology as the only respectful terminology, especially from within a group of people where what the respectful terminology is, is massively up for debate. Even your personal offense doesn’t bug me as much as the fact that you claim that offense on behalf of a neurotype that doesn’t have anything close to a unilateral view on this, and also on behalf of another class of people that I happen to belong to and therefore have a stake in defining my own terminology.
This reminds me of the people who will debate endlessly whether “disabled people” is an insult, and whether the proper term is “handicapped,” “people with disabilities,” “differently abled,” “diffabled,” “special needs,” “dis-labeled,” or somesuch. Or, “crazy” versus “mentally ill” versus (insert specific diagnosis here) versus “neurobiological disorder” versus “mental disability” versus “psychiatric disability” versus “psychiatric label” versus “psychiatric patient” versus “psychiatric inmate” versus “psychiatruc survivor” versus “ex-patient” versus “consumer” etc.
But when people tell me what to call myself and my experiences, that’s just a tad much. You don’t want to call yourself brain damaged, or these drugs brain-damaging? Then don’t. But don’t tell people who’ve got the brain damage what to call ourselves or the drugs, it’s our prerogative to call the things whatever we want to, just like it’s my prerogative to call psychiatric institutions hellholes even if some people happen to go into them on purpose.
We can all [and do] make mistakes with our use of language but as long as the underlying principles are sound, hopefully we can all stay on the same page or book. [large volumed one]
Best wishes
I have noticed over the years, as well, that no matter what terminology is being discussed, there’s somehow a default assumption that the terminology used by people who voluntarily use psychiatric services, is the more correct and polite terminology.
The terminology used by psychiatric survivors and ex-patients is nearly always seen in comparison as some combination of impolite, threatening, offensive, and dangerous, in comparison. (By the way, contrary to popular belief, there are people in that movement who use these drugs, we tend to be pro-choice on those matters.)
This being because “consumers” tend to be more socially acceptable than “survivors”. Especially since “survivors” contain a large contingent of (gasp) former mental patients off our medications!!!! Which is anathema to most of conventional wisdom on the matter. (And I’ve been both on and off psych drugs, and you get crap for both but believe me you get more crap for being off of them than on them and for criticizing them than for praising them.)
Not that Kev made this particular little imbalance in society, not that he’s necessarily aware of it, and not that he’s using it on purpose, but anyone reading this please be aware that it’s there when you evaluate my use of language for potential offensiveness.
And I’m not going to tiptoe around the fact that these drugs are (as a general trend in terms of what they do to people) brain-damaging and that I am brain-damaged by them.
Kev,,
I come accross the medication issues
when talking to parents with autistic children pretty frequently. The in person support group I started back in 1999 was for Parents of autistic children.
I try to remain neutral on the subject of neuroleptics.
People have to make some very hard decisions for their children and for themselves
I have a very colorful famliy backround and medication for some of my family members was helpful.
My mother was epileptic and most likely bi polar but she was anti meds which was fine in some respects when she could function,,, but towards the end of her life she had to come to terms with excepting not only her epilepsy but her inablity to regulate her emotions and be in a postion where meds were saving her sanity…. she was prescribed seroquel a neuroleptic along with meds for her epilepsy and prednisone for her lung cancer and numerous other things .
I always considered my Mother a kindred soul even though she could really be unpredictable…. she could be very nice,,, overly nice and then out of the clear blue with no warning rip people to shreads,,, when she wasn’t on meds.
That said I have had personal experience with medication myself although I have not been on any med regime for any great lenght of time..
So back to neuro diverse…
It was Jim Sinclair I believe who first came up with the idea of autistics and “cousin’s” the cousins I suppose was like the precursor to neuro diversity.
The whole idea was to be inclusive to those people who may have had similar neurology to autism but a differnt dx of some sort…
Then neuro diversity was coined but it was a little different in nature to cousins as it implied a certain political view.
http://en.wikipedia.org/wiki/Neurodiversity
Larry wrote a good portion of the wiki entry from what I understand..
I have to admit the term is confusing .
Vicky
Oh, and by the way, I just caught a sentence that could be the source of some confusion, so my answer to that:
My use of the term has to do with the fact that the probability of brain damage increases as time and dosage of neuroleptics increases, and eventually is pretty close to inevitable.
It does not mean that people who take them were brain-damaged to begin with, or that the rate of brain damage in people who take them is 100% (although it does approach it the longer you’re on them and the more you take), or that brain-damaged people are lesser human beings (hello, I’m one of them?), or that there are no circumstances when the benefits of the drug outweigh the risk of brain damage (or I wouldn’t have been on them a year and a half ago on purpose knowing what I know about them).
(And this was always about neuroleptics to me, not about “medications” in general which is too broad a term to have a meaningful unilateral view on.)
Vicky, as for the term “Cousins”, that was coined in a meeting that Kathy Grant and Jim Sinclair had (I believe others were there too). The phrase itself was from Kathy, in response to a question that was, essentially, “What do we call people who are similar to autistics but not autistic?” to which Kathy replied, after a very short pause, “Cousins!”
“In the course of this exchange, the phrase ‘brain damaged’ was used in a way that seemed to indicate to me that those who may have to use neuroleptics have damaged brains.”
Could you clarify what you meant here and why you find it an insult?
Was the person saying that people with bipolar have damaged brains and that is why they need to use neuroleptics at times? ie I’ve heard it said that prolonged manic episodes can cause brain “damage” in the way untreated epilepsy can, and that medication can limit that. I don’t see much problem with that. However, while I don’t think “brain damage” is necessarily an insult, my experience is that when it is used to psych patients it’s to say, “so-and-so is brain damaged, they can’t think straight so dismiss what they say”. Is this why you find it insulting?
I’ve also heard some people say that schizophrenics (who may have to use neuroleptics) have brain damage due to their illness, when it could be argued that it’s a developmental diversity just like autism. I can see that may be insulting in the way that autistics find it insulting to be told they are broken and need fixed.
Or was the person saying that people who use neuroleptics have damaged brains as a result of neuroleptics? I think neuroleptics do cause brain damage, but not using them may be more harmful for some people at times.
tinted, see comment #6.
Ballastexistenz
Yeah, I agree. My post overlapped, I hadn’t seen yours when I wrote it, but I thought I’d post it anyway.
Ballastexistenz:
I’m _not_ suggesting the description was wrong. I’m also not sure (although I might not have been clear at the time) that I was _insulted_ exactly. More that I was taken aback and unsure how to react.
There is, of course, a world of difference between ‘brain damaged’ and ‘rotting brain’, both in the specifics of meaning and the intent to be maliciously nasty. Please don’t think that I am comparing the two as being massively similar. I am simply saying that _at the time_ that I was taken aback and not sure, based on the context of the other discussions going on at the time, how to take those words.
I’m still not. I hear what you’re saying about using those words to describe yourself but that doesn’t seem to matter to me. I think we have to be very, very sure that when we use words like ‘damaged’ that ‘damaged’ is right. It wasn’t that long ago that that word was used (and still is) that ‘damaged’ was an adjective used to describe autistic thought processes. We know _now_ thanks to the work of Michelle, Morton Anne etc that ‘damage’ should be replaced by ‘different’.
Vicky/Joel – thanks for that mini-history. Would you say that that is what ‘neurodiversity’ still means? Autistic people and ‘cousins’? Or has the term evolved more into the umbrella community of differing neurologies that I learned it was?
I don’t actually see any conflict between brain damage and neurodiversity. But then, I’m used to the disability rights movement where things like damage to the spinal cord are considered forms of diversity (despite the fact that nobody there is lining up for externally-induced brain damage or a spinal cord injury).
I don’t know much about neurodiversity – I think that it’s supposed to be more than autistics and cousins, but so far I’ve seen it mean:
1) *EVERYONE* which begs the question of why have an additional category when “everyone” works just fine.
2) Everyone who has a non-typical mind, but with an over-representation of autistic people
That’s why I don’t identify with the movement yet – I can’t identify with #1, because I think “everyone” or “human” is a better term for that. I can’t identify with #2 because I don’t feel the neurodiversity movement needs yet another autistic person right now, at least not if we’re saying that the people affected should be the ones that are represented.
I could write more, but I’m on my way out the door right now. I’ll write more later.
I first came accross the term neurodiversity in Judy Singers Paper in French and Corker (ed) Disability Discourses. That is to say I saw it first in a disability studies publication, along with a number of other essays written from the post modern perspective, indeed Singer considered neurodiversity as a concept to be part of post modernism, which movement I do not consider to be intellectual pomposity and fraud.
Be that as it may, I think it is the failure to understand post modernism that has seen people polarise against it, and be that also as it may I next came accross the term by reference to ADHD and dyslexia. It was only later that I saw the by now infamous spoof on “neurotypical disorder”.
From the beginnings of my encounter with the online autistic world, I thought that it was not particularly a good idea to divide the world exclusively into autistics and neurotypicals, as I did not think that dylexia and adhd were particularly any more neurotypical than autism.
I wrote in 2002
“Thus one may be diagnosed with obsessive compulsive disorder, one with semantic pragmatic disorder, some with central auditory processing disorder, another with dyspraxia and another perhaps with dyslexia according to whatever present strongest, whereas to me they are all mathematical shapes within the multi-axial model, islands in the neuro-diverse landscape as it were.
It is like any map where the different colours represent man made political boundaries, that is to say the diagnoses found in the manuals, but the land is bordered naturally by rivers and valleys where one people inhabits more than one country.” and I fell out with DANDA (Developmental Adult Neoro-diversity Association)over the way in which they had taken a non medical description of a range of differences and turned it into a medical model. I particularly disagreed with Mary Colley at the time because she would not allow Stroke as a neuro-diversity, sticking to so called “developmental” conditions as the paradigm.
I have also, in discussions on disability lists considered and defended the position that people with CP have a strong claim on the word as well.
Kev,
I’m not sure I know the answer to your question. Orignally I think neuro diverse decribed more of a “creed” than anything else. I know the term has been used in blog names or Kathleen’s site?
As far as a community of people with similar political views.
On Brain damage: I have been upbraided from someone who I can’t remember at this time for using the term, but I think it may have been outside the on line community..
A psychologist that I went to described me as Brain damaged and at first it stung my mind but then later I embraced it as a possiblity.
I am diagnosed with aspergers syndrome and generalised anxiety disorder with occasional depression that in the past had some psychotic features.
My Mother when I was 17 helped advocate for me when I had a psychotic break, she was a psych system survivor ( I don’t know how else to put it) she had the doctors reduce my medication when I was zombiefied by neuroleptics. I was on them only a month and a half.
I particularly disagreed with Mary Colley at the time because she would not allow Stroke as a neuro-diversity, sticking to so called “developmental†conditions as the paradigm.
I’ve noticed that too.
That there’s the “fashionable” forms of neurodiversity (autism, dyslexia, dyspraxia, bipolar, etc — of course which ones are valued most depend on who you ask but these all fall into the more fashionable category overall) and the “unfashionable” ones (CP, stroke, brain damage, intellectual disability, nerve damage, etc).
I think it was word spy that got to the word before I did in Wikipedia and AFF have more or less rewritten the page in recent times to include a lot more reference to ongoing debates Judy Singer still maintains she invented the word, though it is possible that it was used before that as I saw it once by reference to genetics somewhere at around the same time Singer was using it online (it was some comparison with bio diversity I think but can’t remember the details now.
Certainly Judy Singer was the first in print with it, and popularised it’s use on autistic lists. It was Harvey Blume who gave it a lot of currency with reference to autism too when he wrote of the early list culture, later described by Martijn Dekker in a paper that also refers to his learning from the mental health survivors movement if I recall properly. I have been involved with mental health survivors and advocacy too, and some radical repositioning has gone on there in terms of the way that conditions are redefined in alternative non medical terminology.
Due to Danda and various offline social groups and meetings, Neurodiverse or ND as an self appelation has been popularised in the UK.
I used to call myself neuro-divergent, that is to say I went my own way in my thinking.
Just to make it even clearer on the difference between wilful insult and possible miscommunication – a concerned friend just mailed me after reading this asking if I wasn’t concerned about what the Bests/Handleys/Schafers/etc of the world will make of my disclosure. The answer is, of course, ‘no’. For me, their opinion of me is meaningless – who could possibly bring themselves to care about what someone like John Best thought about them? However, the opinion and words of the people in this thread are _not_ meaningless. That’s the difference.
Judy Singer used to say she had no idea whether she’d invented the word or if she’d picked it up somewhere. Now she claims that she definitely invented it. (I’ve wondered if this is because of the political and legal stances she’s taking lately about autistic parents and custody rights and so forth, but since I don’t know her I obviously have no idea what her real reasons are for changing on that one.)
And, yeah (again WRT comment 18), the non-medical terminology is why a lot of what we end up saying (from the psych survivors perspective) sounds very offensive to some people, because a lot of it is reclaiming stuff like mad and crazy and stuff that are not medicalized terms and describe us as a social grouping rather than a medical condition.
Although the main problem I see in that movement is a reluctance to acknowledge that neurodiversity even exists, because of the fear that if we really are physiologically different in some way then we would be forcibly drugged. Which I see as understandable but not accurate. Plus the takeover of large parts of that movement by psychoanalytic psychiatrists who are against biological psychiatry but not against psychiatry in general or the power structures therein.
And that’s also where part of the distortion comes from, people diverting that movement into a professional disagreement rather than a real attempt at changing things on a level that will help ordinary people. There’s a lot of energy wasted there fighting biological ideas and trying to replace them with psychoanalytic ideas rather than fighting the actual system that forces the application of all its ideas (biological or psychoanalytic) down the throats of patients all the time.
Kev, I don’t think their opinion of you is meaningless exactly. As one person I know put it, if people that nasty look down on you, you must be doing something right.
My father’s father’s English name was Charlie Chew (not Charles, Charlie). I rather think that he took that name because “Charlie” was the name a “Chinaman” was given, and I had some reservations about giving the name to Charlie, with the racist character of Charlie Chan in mind. But I think it is possible for the people who’ve been oppressed and discriminated against to reclaim the terms and the words that have been used to put them down: So arose the notion of “yellow power” in Asian American activism in the 1970s. Not that I don’t feel a dart cast into me on seeing words like “chinky” or “Oriental.”
I have to thank you, Kev, for writing so honestly about yourself. I think many of us parents are aware that we have some differences of our own and learning how to be honest and accepting of our children’s own difference can help us learn better how to talk about ourselves.
The conference that I went too—the one I wrote about here:
http://www.autismvox.com/what-is-autism/
—felt like several steps backward to me. There was no neurodiversity in the conversation at all and I felt very much how it limited the discussion: No one should have a discussion about genetics now (this was the subject of one of the lectures) without considering, what will we do with this knowledge? The conference reminded me of how there should be room for disagreement and dissent on the Hub but that we do all share some views and beliefs that many in the autism world have yet to hear of.
Yes there is a snag with neuro diversity in that it accepts essential biological and genetic difference, however it puts it more in line with physical “impairment” in that it is the biological or genetic “impairment” that gives rise to the disablement of society for those so “impaired”
I don’t like the word impairment and the essential interchangability of words “impair” “disabled” and “handicap” make a “dogs breakfast” of the interpretation of a strict social model.
It was interesting at the conference http://www.disabilitystudies.net/index.php?content=23&action=2006 where I presented my linguistic critique,to see people from a variety of perspectives, including Mental health survivors, old time physical disability campaigners and critical genetic ethicists like Tom Shakespeare with whom everyone seems to disagree.
Kristina – I hesitated about using the word ‘chinky’. I think its one of those words that can’t be rehabilitated like ‘queer’ successfully was. However, I wanted to be honest. I hope you don’t mind.
Fascinating discussion here.
Since the onset of my exposure to the Autism Hub, I always felt that the term Neurodiversity was used in this way:
No one person represents neurological normality, therefore any and all humans are not entirely neurotypical. Thus, by using the term Neurodiversity, we are implying (in the context of speaking of “named” psychological disorders and the like), that there is no value being attached to any type of neurological makeup. In other words, NT or ND do not “one-up” the other.
I am NT – but most certainly do not fit into the precise average state of thought or mental function – nor does anyone else. Due to the fact that I have no ‘named’ psychological disorder, it is not safe to extrapolate that I am ‘normal’. Maybe I have terrible temper tantrums. Maybe I am a world-class speed-reader. Maybe I have outlandish musical talent. Maybe I can only stand to be around people for a few hours at a time.
To me, that has been what Neurodiversity represents – the foundational understanding that “not conforming to average” or “not normal” does not equal “not good” or, alternatively, “prodigious”.
By this reasoning, NT is a subset of ND. All people are ND, and there are many ‘named’ categories to help frame references for the purpose of understanding and discussion of various types of functioning.
Disclaimer: These are my own thoughts on the topic – no one gave me this perspective, I arrived there on my own. Many commenters here have plenty more time invested and knowledge gained, as well as personal perspective on how others’ views affect them personally. Therefore, please educate me if anything I am saying is offensive or just plain stupid. Thanks.
Kev-I didn’t see the brain damage thing as anything meant to be insulting to ANYONE FWIW, and I DID see that discussion. I have permanant damage to my extrapyramidal tract from a succession of neuroleptics that supposedly don’t cause such damage (Risperidone finished the deed, if it matters, and I know have a permanant tongue roll and eye twitch. I was in my early 20s and on the very lowest possible dose of everything they made. As in, cutting smalleset pills in half). It is one of those medical realities. Mine shows up on CT scan…great fun explaining that one to the newbie in the radiology departments. I’m brain damaged from concussions and from status epilepticus too. Those show on fMRI and SPECT scan. It just IS.
Regardless, you aren’t broken, even if you do wind up with TD (highly unlikely, based more on anecdote than data since I don’t believe what they say about EPS and TD at this point). You’re you regardless of label or lack thereof. Regardless of meds-gods above, if meds changed who I am I’d change every week or so.
So, uh, welcome out of the closet I guess? *hands you a balloon*.
And AFAIK neurodiversity IS for everyone, And I had the first celebrate neurodiversity SHIRT! (handpainted, still in high school). No idea who invented the word. Good concept though.
Joel,
I read your comment (#14) this morning before church, but couldn’t take the time to respond at the time because, well, it was time for church! Also, driving always lets me think, and as I drove to & from church, I let what you said percolate.
The point I want to talk about is your #1 – EVERYONE which begs the question of why have an additional category when “everyone” works just fine. – which you clarified with “I think “everyone” or “human” is a better term for that.”
I think that it would be great if “everyone” or “human” was going to cut it, but the sad fact of the matter is that those terms just aren’t good enough. It’s too easy to cut people out of “everyone” and “human”.
I think it’s harder to cut people out of “neurodiversity”, since everyone has neurology, and the entire population can be considered diverse.
I dislike groups which define “diversity” as being about one specific thing. A group that has the word in its name needs to be me about more than mere sexuality, disability, skin colour, gender, etc. It needs to be about everything that contributes to the uniqueness of each individual.
The good thing about the neurodiversity movement, as I see it, is that it has defined itself as being specifically about neurological diversity. The problem comes, I think, when people start trying to divide and define just what neurodiversity really encompasses. Limiting diversity shouldn’t be attempted, IMO, because then it’s not diversity anymore.
Just a few thoughts.
Hi Kassi, I wonder if the constant twitching I have in my tongue and the other facial twitches might not be tardive dyskinesia, don’t know what the window on these things turning up is, but I stopped taking Risperidone when I developed an eyelid twitch.
Like others here I may be brain damaged anyway from way back, that was the opinion of the psych who diagnosed me given the way I tested, probably happened when I was 7 months old.
Larry, I have an eyelid twitch as well…stopping risperidone didn’t make it go away. One of the doctors I saw thinks autistically brained folks are more likely to develop permanant TD than the warning signals that other folks get. Interestingly, one of my seizure meds has been crucial in making it less of a cosmetic problem (and at the age of 24 I AM allowed a bit of a freak out at a twitching eyelid). Turns out it’s a dekindler and reverses seizure induced brain damage…leveracetam (Keppra in the US). Comes from piracetam, which isn’t available here.
I would be careful about any form of “diversity” which gives the majority an equal or larger say than the minority, at least while the majority is still engaging in prejudiced, bigotted behavior (even if some members of the majority are not, the majority of the majority is).
That’s why the “everyone” thing bothers me about neurodiversity too. It makes it impossible for us, on a political level, to sway public opinion.
Minorities need more than their fair say to protect their rights – it’s unfortunate that’s the way things are, but it is the way things are.
That’s why I’m likely to participate more in autism advocacy or disability advocacy than everyone (under any name) advocacy.
May one belong to the Neurodiversity movement and to the Autistic Advocacy or Autistic Rights Moveements simultaneously?Because I see the value the wider umbrella concept and the necessity for actions specific to autism/autistics.
I also see not so much a linear spectrum as a three dimensional model for who is where and not a rigid or static assignment of place on such a map, but a very fluid construct, whether viewed internally or externally. I do see myself right now as aligned with two separate and still emerging movements. And if this is true, must I switch hats or use some type of code to let people know where I’m coming from day to day?
I think this is relevant only to the extent that anyone is listening to us in the first place.
I have more than one label to contend with and experience my differences from the majority in various ways. I think of myself as autistic first and most importantly, and feel I have more to say about autism than any other type of difference. That’s not meant to exclude anyone; if it is a value judgment, it applies only to myself.
The interesting thing is, unless I’m pointing out that I’m brain-damaged, I don’t really think about it. It’s not like it’s separable off from who I am now any more than any other experience or shaping of my body is. (Well, lots of things about my body I don’t think about, they just, like Kassi says, they just are.)
And then, again, I think that if we are honest with ourselves and allow neurodiversity to encompass everyone, then it is (or should be) a simple thing to have various other movements working within the larger umbrella. So that there is autism advocacy working as a part of the neurodiversity movement, but autism advocates aren’t necessarily working also for ADHD advocacy. Etc.
I understand what you’re saying about being able to participate in more than one movement – and I agree. But I have a hard time supporting any movement which would encourage the status-quo, and any movement which includes “everyone” as equal partners will encourage that.
That’s why I’ll be involved in autistic and disability advocacy (besides for the fact that disability advocacy isn’t unfairly over-represented by autistic people). It’s also why I’ll not be involved in neurodiversity while it is a synonym for everyone – while I do believe everyone is created equal, I do not believe what is needed at this stage of the game is a majority voice from the majority.
About Tardive dyskinesia (TD)
Seems to me that I have read in Pub med
intstances where anti depressant use can cause (TD) also. It would take some digging to find some of the articles to cite.
Probelm is with any use of mind altering chemicals you run the risk of damaging some chemical structures that have memory capacity. The damage may be permanent or transitory.
Physical structures too.
Neuroleptics tend to cause physical swelling in certain parts of the brain, the longer people are on them and the higher dose, the more they tend to cause.
Well, I *am* brain-damaged (I have a medical diagnosis of periventricular leukomalacia, a.k.a. PVL for what it’s worth), and I don’t see why it should be at odds with neurodiversity.
When I was growing up, people didn’t want to call me “brain-damaged,” even though it was perfectly accurate. A neuropsychologist told my mother he really didn’t want to use that word in his report, although he eventually did. And at one point my mom didn’t want me to tell anyone I had brain damage, because “they’ll think I did it to you” (i.e. abused me).
A lot of people use the word “brain damage[d]” as an insult, but that doesn’t mean it automatically is one. It’s like when people call politicians and governments “autistic” when what they really mean is “egotistical” or whatever.
I’m always taken aback when people argue that their neurotype should be respected because “we’re not brain-damaged.” (People with PVL, for instance, have a huge variety of neurotypes, including autism/Asperger Syndrome/”autistic features,” etc).
Vicky,
I have come across that too. If you put, for search terms in pubmed, “SSRI tardive dyskinesia” or “fluoxetine tardive dyskinesia” there are some articles to cite.
http://www.ncbi.nlm.nih.gov/sites/entrez
(EDIT I meant that to link to the results page but it didn’t)
I also had terrible akathisia when prozac was added to a neuroleptic I was on. (EDIT I was given the prozac for anxiety, which it made worse as well as draining from me the will to live. I actually prefer neuroleptics to antidepressants!)
I’d prefer the appropriate environmental supports to drugs (which I do not believe *I* need). Unfortunately I think anti-depressants are often prescribed to people who really have an obvious cause to their depression (and it’s not a “chemical imbalance” – it’s a “shitty life circumstance”).
Thanks tinted,,,
this is kind of an odd medium for me
I am not sure how much to comment on cause it is not like usenet that I am familar with,,, I just wanted you and others to know I am reading what you are saying.
V.
Joel: “Unfortunately I think anti-depressants are often prescribed to people who really have an obvious cause to their depression (and it’s not a “chemical imbalance†– it’s a “shitty life circumstanceâ€).”
This point was argued in a paper I published in Good Autism Practice, about four years ago.
Andrews, D., (2002) “Mental health issues in Asperger syndrome: preventative mental health work in good autism practice.” in Good Autism Practice, Vol 3, Issue 2 (October 2002)
Copies may be available if you ask Dr Glenys Jones nicely (she’s one of the editors). She has a page on the website of the University of Birmingham, on the subsite of the School of Education.
I’ve lived in areas that were mainly composed of Caucasians (here in the US). In those areas everyone seems to be of a uniform type, until that one unusual person shows up and stands out as if he were wearing a day glo orange jumpsuit (even if he isn’t).
Places like that suffer from a lack a ethnic diversity, well maybe they aren’t suffering or don’t think they are missing out on anything, but I think they’d do better with more ethnic diversity.
There are businesses run by Caucasians where there are no non-Caucasians, and that is more or less deliberate because the bosses don’t want any other ethnicities to part of their workforce. So maybe the gov’t would step in and say, “if you want to be able to win a bid on a contract with the us, you better get yourself some ethnic diversity.
That’s kind of like biodiversity. Biodiversity says that it’s a bad idea to say that only one kind of bird, one kind of mushroom, one kind of tree, one kind of reptile, one kind of mammal, one kind of insect , one kind of fish…. is adequate to keep a particular habitat healthy.
If there are 34 kinds of butterfilies in an small ecosystem, does someone get to say that everything will be just fine if 30 of them were made extinct?
So, neurodiversity…
According to how I see the brains of all humans, and the the attributes of these brains (has seizures vs. no seizures, learns to read easily vs. can’t learn to read at all, hears voices of people whar aren’t there frequently vs. never hears voices) can be arranged on a bell curve. In the middle of the chunk– those are the normal people–they aren’t likely to have seizures, aren’t likely to hear voices, aren’t like to have problems learning to read, etc.
Hurray for the normal people!! Some of my BEST friends are NORMAL people, not too many of my BEST friends are NORMAL, but some are. One of my children is pretty close to normal, but has some issues around spelling and dysgraphia, and has some issues around making eye contact that are probably neurologically based, but the rest is pretty normal.
In the past people didn’t want to have children that were smarter than normal. Genius chidlren were seen as freaks, so back then (here in the US anyway) people would liked to have seen no intellectually disabled people (one side of the bell curve) and they’d also liked to have see no very intellectual “genius” people (the other side of the bell curve). They were not too interested in intellectual diversity, they wanted more intellectual uniformity.
Along comes the idea of neurodiversity.
To me neurodiversity is the opposity of neuro-uniformity. Depending on who is holding the scissors they could snip off either or both of the ends of the bell curve to eliminate the outliers, or if one was residing in the outlying area, one might want to snip out the normals and the guys on the other side of that bell curve, or just snip out the normals and keep both tail ends of that bell curve.
The guy with the scissors who is designing his ideal world might not allow for any people hearing voices (those guys gotta go) or they might not allow for any people with seizures (those epileptic guys gotta go), or they might decide that they aren’t making room for people with migraines or synaesthesia, or depression or anxiety (they all gotta go), or Alzheimers’ or other kinds of dementia (those old decrepit guys gotta go) … in the name of reaching for a kind of uniformity that the guy holding the scissors approves of.
Practically speaking there are people who live their lives without any obvious neurologically based handicapped, or maybe they are managing their dyslexia so well that they never have to think of it any more… they are neurotypical humans by definition, they are in the middle of that bell curve, whatever limitations they have (they can’t hear a dog whistle) are common ones to humans.
Then there are the ones who are on the edges of the measurements. They have too much or too little of something.
We can toss them (including me) on the garbage heap in favor of more neurouniformity, or we can celebrate having them around in the same way we can celebrate having more kinds of butterflies (as opposed to having fewer kinds). That’s celebrating “the variety in human wiring”.
That’s what I thought neurodiversity was. Trying to show people that while they personally might have a thing against black and yellow butterfiles, and prefer the blue ones, it’s not a good idea to try to limit the kinds of butterflies we have to only blue ones, because even if the anti-yellow-and-black-butterfly guy can NOT see any reason to keep the yellow and black butterflies around, he should be able to realize that there could be reasons he doesn’t understand for keeping them around.
The stuff on neurodiversity.com is not just about autism, though stuff that overlaps with autism or is autism is the main thrust of Kathleen’s site. I think she’s done a fine job with neurodiversity.com. It’s secret message is NOT “this is hate the NT’s.com” Kathleen identifies as being (mostly) NT, last time I checked. Some of her best friends are NT’s…….
I don’t think anyone owns the definition of any word, definitions are constantly changing. I don’t use the word “neurdiversity” very often and I don’t use ND very often, and when I do it’s mostly tongue in cheek because Lenny et al coined ND and defined it as “a bunch of dishonest, meddling, heartless, stupid goldbricks trying to pass themselves off as autistics” more or less.
“Neurotypical” is a word that is now used occasionally in peer reviewed journal articles to describe a group that has nothing that would mark their neurology as unusual. Just as they use “TD” and “ASD” for “typically developing” and “autism spectrum disorder” to describe the two groups they may be comparing in a study.
To me, it’s always been obvious that neurodiversity was not merely the province of autism, no more than ethnic diversity in the US is the province of Albanian Americans.
That said, “autistic” may be used as an insult among Tourette’s people, as in, “At least I’m not autistic!!” And autistic people have their own prejudices, “at least I’m not _____” So it’s not like there’s all this LOVE among the “neurodiverse”.
I just tend to think of all humans as stupid. We all make these heinous mistakes all the time. That’s why we shouldn’t hand the scissors to ANYONE and let them define who it is that doesn’t need to be here on earth any more.
I just tend to think of all humans as stupid. We all make these heinous mistakes all the time.
Perfect. I love it. What a phenomenal statement.
I don’t think that neurodiversity is about “majority rules”. At least, that’s not how I look at it. It’s more about equal treatment, regardless of majority/minority status. Being given the kind of consideration and accommodations that actually even the playing field (rather than making life easier for the minority than it is for the majority).
Yes, I do think that neurodiversity includes NTs. It means everyone. I do not, however, think that it should be democratic. Democracy is not the best way to rule or lead. I don’t know what is, I just know that democracy isn’t.
I had a recent arguement with the journalist Peter Hitchens over on his blog about ADHD and there is a current one about Dyslexia.
When I mentioned Neurodiversity, he scoffed in his reply:
“Do I see, in the use of the term ‘Neuro-diverse’ the construction of yet another oppressed minority against whose claims reason will be powerless, since critics will be accused of being….neurophobic? ”
So I simply pointed out that as Mr Hitchens has a brain with distinct strengths and weaknesses, Neurodiversity includes him.
About Biodiversity =neuro diversity
Well I read up on biodiversity.
It says somewhere about the dominate species being prone to agressiveness something like I guess australia has the problem with that particular frog being introduced into the system.
The term neurodiversity was borrowed from bio diversity ok thats fine but it came out of the autistic rights movement which has little to do with making things equal for NT’s as they are the dominant species
And the next logical thing to come up in this ever changing world will be
The Mutants. The Replicans and the Cyborgs.
And
It’s interesting to see civil rights brought up in these discussions..
As much as we talk about integration no one really talks that much about natural segregation. If you look at demographics you see it happening all the time.
Races tend to cluster in certain areas .
Ok that was random thoughts but who cares? ;-0
As for racial diversity, I’ve noticed that the places in the US who have the most racial diversity also seem to have the most prejudice.
Where I live is almost exclusive white. Yet when I tell my friends about some of the stuff an in-law (very prejudiced) believes, I get responses along the lines of “How the heck could someone actually believe that?” When I talk about it where she lives, I get responses of, “Of course, that’s the way things are.”
Right now some of the places with the strongest anti-hispanic sentiment are places with the highest numbers of hispanics.
I think the reason is pretty simple – it’s easy to blame people that are different than you for your problems, but there needs to be the credibility of sufficient numbers to do so. So someone where I live would have a hard time blaming not being able to pay rent on blacks, simply because there are very few blacks in this area, but someone in the south might find it much easier.
What this has to do with neurodiversity, I don’t know, but I know I’m still not convinced that I’m throwing away the people in the middle of the bell curve or that I’m hating NTs. I do feel very stongly that what is needed is to correct the lack of power those on the ends have, and the best way to do that is to not give the majority of the power to the majority of people – the poeple in the middle. Once again, I have been called a bigot and exclussionary enough in these discussions that there is no need in telling me that again.
One more thing – pretending that we aren’t giving anyone power, or that the power doesn’t exist, won’t make the power imbalance go away. I suspect those on the ends generally have a very different view of the power difference than those on the middle, hense the need for them to be seen as a minority group together, without the middle as part of that same INFORMAL UNORGANIZED minority group.
It’s not prejudiced to have a minority goup, nor does the existance of such a group imply that people not in that group are not valued. Having such groups is essential to deal with the power problems that are unintentional and largely unnoticed by the majority.
The other problem is how not to exclude the people on the ends. If we worry about that, then it’s clear an orthodoxy test (“You believe that all minds are equal”) will exclude people who have traditionally been excluded, including people on the ends. Not everyone who has a different-than-neurotypical mind (I worry that I see this discussion progressing in one where there is no way to articulate the disinfranchised group’s identity because neurotypical and other words will end up being considered “offensive” – and that only will make talking about prejudice very difficult) agrees that they aren’t broken, aren’t in need of a cure, etc.
I don’t think that it’s right to exclude them, no matter how offensive their beliefs are. Otherwise we create a system where there’s plenty of speculation on why they want the cure and we don’t (and get things like “Well, for people closer to the middle, neurodiversity is fine, but it even excludes people who are closer to the edges”) whether or not they are based in truth (it isn’t distance from center but orthodoxy which is being judged).
It also implies that we know we are right and know everyone else is wrong. That’s scary in itself – elimination of dissenting voices is not good for a movement either.