Political Correctness In 3 Different Autism Worlds – By Donna Williams.
 POLITICAL CORRECTNESS IN 3 DIFFERENT AUTISM WORLDS – By Donna Williams.
Whilst there are many political roads one can go in the autism world, I see there are at least three quite BASIC ones :
* there’s the ‘Militant Curists‘ who do the sympathy/pity/tragedy thing and they use words like ‘handicap’, ‘disorder’, ‘disability’, ‘abnormal’, ‘pathology’ and are geared toward charity and over use the word ‘help’. This group see themselves as ‘normal’ and the goal to ‘normalise’ those who are not like them, or eradicate them. There are eugenicists in this camp currently trying to find the genes so they can breed out autism. These people confuse pity with love. They refer to ‘The autistic’ and often see autism as pitiable, embarassing, broken, an obstacle to selfhood and a burden to society and families.
* there’s the ‘Militant Culturalists‘. Passionate is not necessarily militant. Passionate does not seek to crush others who think differently. Passionate can encompass diplomacy. Militancy, by contrast implies striving for dominance and crushing all opposition in the process. Culturalists see autism as a shared culture. Militant culturalists may do reverse prejudice (ie ‘Autistics’ are all linked to Einstein – they think he’s on the autism spectrum along with most of the highest achievers in history) and most culturalists refer to ‘non-autistics’ as NT (‘neurotypical’ and some of the less respectful culturalists use this interchangeably with the term ‘mundanes’ or call non-spectrum people ‘muppets’ and ‘breeders’). Cultuarlists, militant and passionate alike, staunchly drive the Autistic Pride movement and link it to Gay Pride and Deaf Pride. Whilst many culturalists accept treatments for health issues, most militant culturalists are strongly anti treatment in any form. Some militant culturalists are even against adapatations. For them ‘Autistics’ are ‘perfect’ just as we are. Culturalists tend not to use the word ‘disabled’ or ‘disability’. They use ‘neuro-diverse’, ‘differently abled’. Militant culturalists see ‘normality’ not only as ‘relative’ but some see non-spectrum people as having become so superficial and false they are not ‘normal’ nor do they see it as desirable or moral to be ‘like them’. Whilst many passionate culturalists are diversity friendly, militant culturalists may claim to be diversity-friendly but a percentage are also supremacists who see themselves as morally superior to non-spectrum people. Many militant culturalists are ‘self diagnosed’, sometimes once their child has a diagnosis.  Culturalists tend to refer to themselves as ‘Autistics’ and see this as integral to their selfhood. Some culturalists go so far as to say that if any aspect of their autism were even reduced it would be the same as eradicating their selfhood.
* Then there’s Moderates (like me, my husband Chris and those on the spectrum and beyond who hang with us).  I have gut, immune, metabolic disorders, a mood, anxiety and compulsive disorders, visual and verbal agnosias, dyslexia and I’m challenged in the info processing and learning departments BUT I’m a master of adapation and I don’t go for cure but I do believe in treatment and management for severely disabling or limited health or sensory perceptual disorders. So with me ‘normality’ is relative. You can use the word ‘disability’ and I don’t think it defines all I am. But I’m more comfortable with ‘disAbility’ and ‘disAbled’ which emphasised that I have many abilities as well as, sometimes because of my disabilities. I also use ‘diffabilities’, ‘differently abled’ and prefer to use the term ‘challenges’ rather than ‘disabilities’. When refering to those not on the autism spectrum I avoid calling them NT (I hate that reductionism).  I use the term diversity-friendly as encompassing ALL diversity, not just those with labels (ie gay, deaf etc). Moderates on the spectrum are content to refer to themselves as ‘on the autism spectrum’ (happy to see ALL humans as having some elements of autism at least at some time) without seeing this as a ‘sell out’. They tend to see their autism as part of, intertwined with but not the whole of their selfhood.  I use words like ‘support’ rather than ‘help’ (because support is egalitarian not paternalistic). Militant Culturalists often see moderates as undecided, weak or selling out in the battle to advocate and educate about autism.
warmly,
Donna Williams, Dip Ed, BA Hons
Donna Williams *)
author, artist, singer-songwriter, screenwriter.
Ever the arty Autie.
http://www.donnawilliams.net
http://www.myspace.com/donnaandtheaspinauts
http://www.auties.org
As usual with such lists, I’m none of the above, off in some other direction. 🙂
Interesting read Donna. However I do tend to disagree with things a little.
Not all people whom you call ‘Militant Curists‘ are like you discribe. For our children to receive help, we have to admit they have a disability. Although for me, I would rather focus on the boys ability rather than the ‘dis’ part, it is not possible to receive any help at places such as Early Intervention or a school for kids with additional needs as such. Also a lot of parents will choose to talk about autism as a disability as to educate people on the spectrum disorder. Whether we like it or not autism is classed as a disability.
I have also on occasion used the words ‘neurotypical’ as when trying to explain the differences between an autistic brain and a non autistic brain., I dont like to use the word ‘normal’ to describe the difference and I would prefer to use neurotypical. I dont use the word neurotypical as to talk down at a person. It is just meaning the autistic mind and the NT mind are wired differently. Those of us on the spectrum, don’t necessarily see the world in the same like as others.
In saying all that I am not looking for cures of autism. As I think that is what defines us and makes us US. But i am also interested in the research from time to time as to why we have so much autism in our family. Nothing wrong with looking for these answers. In some ways it can be like someone that has never met a parent and have never known them yet they have this strong desire to know where there genetic make up came from. The same can be said here. What genes have made me who i am today? It is interesting.
OK so this response is NOT a critism so please don’t take it as one. It is just giving a different prospective on things. As to not judge everyone the same that might have similar views.
Disagreement is healthy, we’re all individuals. And there’s a massive difference between having one’s own views and going for the throat. Your comments are respectful and diplomatic so most welcome.
Remember there are culturalists who are not militant and I’m cool with anyone who accepts the full gamut of what autism can mean without pathologising it or glorifying it and without the hate.
Someone with diabetes having a hypo, someone who is left handed, someone with chronic fatigue, someone with an ABI, someone with memory problems, someone developing dementia, someone going through trauma, someone Dyslexic, someone with any co-morbid psych challenge, someone with any major ability to the underdevelopment of other areas they had no interest in… all are not neurotypical. In other words, if you look closely enough all people have some autistic moments or features and all people are neurodiverse. And there are many people on the autism spectrum who are remarkably ‘neurotypical’ in major ways. I’ve met those on the spectrum with Narcissistic Personality Disorder and Antisocial Personality Disorder which are extremes of what we stereotypically attribute to non-spectrum people. So, my feeling is that the reality is far more varied than the labels and when we any of us self isolate from those different to ourselves we can imagine the world really does neatly fit the boxes.
Totally agree that if one is on the spectrum autism is part of one’s history, one’s makeup and much of one’s autism will be part of identity too (though there are ego-syntonic and ego-dystonic conditions one may have as part of one’s autism and the dystonic ones are not experienced as ‘self’). it’s important to self esteem and emotional health to accept who and what we are and how we function but equally not define ourselves by that or confine ourselves to it. If we all did that no blind person would ever pilot a plane, no wheelchair user would ever go up a mountain, no autie would ever be lead singer in a band 🙂
[…] door Drie verschillende werelden (verschenen op de blog van Donna Williams, 10/3/2009) Posted in Autisme […]
Hi Donna,
I think I fall somewhere between the Moderate and Militant Culturalist categories in this scheme.
Like yours, my autism involves a lot more things than just my personality (for me, there are a lot of sensory and processing issues as well), which can be quite disabling, and can cause the person a lot of trouble and grief. I am therefore totally on board with treating these symptoms, and with trying to develop better treatments. I’m also totally in favor of teaching autistic children the skills we often don’t pick up as readily as some of our peers — general life skills, organizational skills, study skills, social skills. What I do not want is a cure for autism, or treatments whose sole purpose is getting us to appear indistinguishable from nonautistic people, but which do not actually give us anything we can use. (This apparent treatment goal of “indistinguishability,” and of appearing normal for its own sake — as well as its ongoing history of abuse — is why I am leery of most behavioral treatments for autism). I also do not doubt at all that autism — even without any of these other problems — is a disability, although I blame most of its disabling effect on the way much of modern society is set up.
At the same time, I am proud to be autistic, I do think we have our own shared culture and constitute a minority group. I do feel that my autism is inseparable from my self. I don’t consider us superior to neurotypicals*, though: our minds work differently from theirs in a few shared ways and a lot of ways that also vary among individual autistics. (Similarly, I think NTs are just as internally heterogeneous; like us, they’re united only by a few diagnostic criteria — or the lack of any. Other than that, they vary, as we do). I do think our liberation movement is like the gay liberation movement, and also owes quite a bit to the disability and Deaf movements. I don’t think we should be penalized for being different, or have to hide our differences to be accepted.
So, what does that make me? Moderately Militant? 😉
(Also, I love the look of your blog. Very beautiful! I lack the graphic-design know-how to customize the look of my blog very much, so I very much admire those who can).
*I do not use the term “neurotypical” to refer to non-autistics: for me, the word refers to people whose nervous systems work in more or less the expected way. This category therefore includes not only people who are not autistic, but people who are not ADHD, not dyslexic or otherwise learning-disabled, don’t have tics or seizures, don’t have CP or any other neurodevelopmental disorder, who haven’t suffered brain damage, who don’t have synesthesia, hallucinations or other unusual sensory experiences, etc. This is accordingly a much smaller group of people than the group of people who are not autistic.
I agree with you that there are definite cultural elements when literal minds get together, when category thinkers get together, when those with social-emotional agnosia gather and overtly declare their thoughts in the absence of ability to read facial expression/body language, and I feel a shared culture with other faceblind people or others with context blindness, meaning deafness. Sure. I don’t know others who sign as much as me but if I did we’d certainly be a shared culture.
I don’t think my autism is separable to my self but I can say there are ways my selfhood defies the limits and obstacles of my autism just as vice versa. So I see them as interactive. I do feel there are some things which are ME but are just about being a human or an animal. I’m cool with that.
I do resonate with those with other sensory perceptual differences. As someone with visual and verbal agnosias, Helen Keller, who was deaf blind, is one of my heroes. I also resonate with gay people but perhaps because I’m rather bisexual with gender identity differences but maybe also because many gay people have also been treated as a case, rejected for differences which are inherent and part of their normality, and because we all care about a more diversity friendly society.
I think you’re a moderate culturalist.
I probably am a moderate with culturalist leanings who is pro respectful and fitting treatment, support and adaptations for those who need these.
I think neurodiverse includes any person who has also had transient but significant experience of altered neurological states, whether because of CFS or addiction, grief, trauma, identity disorders, dysmorphias etc. In the end I find it hard to find many who have never directly experienced degrees of neurodiversity.
I think neurodiverse includes any person who has also had transient but significant experience of altered neurological states … In the end I find it hard to find many who have never directly experienced degrees of neurodiversity.
Oh, that’s a good point. I hadn’t thought of that.
It had occurred to me that “neurotypical” is problematic in that implies that their minds all work the same way, which I *KNOW* they don’t, anymore than ours do!
But I hadn’t thought to question the existence of a divide between neurotypical and neurodiverse. That’s very interesting.
there’s another bender. Many people take illicit drugs or alcohol to experience levels of neurodiversity. Some become addicted, and addiction is another form of neurodiversity. If they develop an acquired brain injury or minimal brain dysfunction due to substance abuse, again they are part of the neurodiverse. Yet those who are precious and possessive of the idea their group are the only truly neurodiverse, would consider their behaviours part of the ‘neurotypical’ world. Life is full of grey areas.
Because smoking usually involves progressive addiction which occurs at the neurological level, we could say smokers experience a shift from their ‘norm’ into a neurologically altered state… one in which they will pay thousands to multi-billionaire conglomerates to inhale carcinogens, pre-maturely reduce their health and looks, impoverish their finances (most will spend $30,000 in 10 years on cigarettes), make themselves smell like an ashtray, contribute to environmental damage (air pollution, deaths of millions of birds and fish a year from discarded butts washed into waterways) and all whether they support these things or not.
They ultimately can do all this just because they have (in accordance with the cigarette companies’ rat experiments) been unable to overcome their addiction. Smokers are not a social majority either. They may make themselves more visible by standing in doorways or some may posture against walls or lamposts (a throw back to James Dean style glorification of smoking?), or gather with other smokers making them more conspicuous, but they are actually only 1 in 5. So, technically, they are not neurotypical in terms of being nicotine addicts. They are technically part of the neurodiverse.
Wild stuff
I think it is an error to describe all “culturalists” as militant and indeed to imply that militancy embraces reverse discrimination.
I am pretty militant, but my militancy is of the kind that abhors “Aspie supremacism” as an unhelpful and dangerous tendency within autism politics, and one that is sure to drive a wedge between various groups who are also “stakeholders”.
My militancy derives from the disability movement, and I go back a long way in that, it comes from a pan disability perspective encompassing neurodiversity, sensory impairment, psychiatric survivors and physical impairment. There has long been a tendency within the disability movement for some people to impose an artificial “heirarchy of impairments” valuing some impairments as more fundementally within the concept of disability than others. That is outright wrongheadedness.
Autism is a culture, but not a monolithic one, it has it’s subcultures too. One can also see that the culture is a relatively young one when compared to other disability cultures, and so the same mistakes are being made amongst the “militants”
It is of course understandable for any “out group” who has been devalued and discriminated against to build a positive identity that involves going over the top in self affirment to the point of denying others. It is not much different really to Coventry City supporters clinging on to the belief that the team is not (no I had better not go ther.
Any way is being one eyed worse than being binocular? I would not know, and I cannot, I simply have no desire for those things that are not within my capability.
I laugh sometimes at all the Einstein talk, he may well have been one of us, but he has been claimed by dyslexics equally, indeed everyone wants a piece of him and you can see why. However Einsteins are not all that common (unfortunately) and within any culture there are exceptions, there are the good the bad and the ugly (which reminds me, I really need a haircut)
I’d describe you as a PASSIONATE and COMMITTED culturalist, not a militant. There is a difference. Passion does seek to crush others, militancy does.
I like your comments.
For the record, Einstein is cited as an archetypal example of the Idiosyncratic personality trait, the extreme of which is Schizotypal Personality Disorder. So ‘autistic like’ on one aspect of personality front. Close but no biscuit 😉
🙂
I’d describe myself as a passionate advocate who supports both treatment for those in need of it and equally recognises cultural phenomena in the autistic population.
My mum was a passionate disability activist too. However no-one would have suggested that her disability rights agenda was one that did not involve treatment. She submitted herself to varying drug regimes, operations and what have you, and would have been quiet happy to live without the pain that her impairment caused. It just so happened that her trajectory was one in which no amount of medical intervention could have prevented and she definately shortened her life through her passionate involvement, but I know that was her choice, life without that involvement would not have had the same meaning.
The notion that there is a hard core of “neurodiversity” nuts who oppose “treatment” is a false one, put about by people who can’t really understand that being positive about what we are is inherently better than being negative.
I have been treated for depression in the past, indeed depression, whether formally diagnosed or not has been a somewhat recurrent phenomenon in my life, and it is not surprising at all. The insanity is believing that depression is never justified by circumstances, I have a certain realism, and that is that I am going to have to live with what I am, so why not make the most of it.
Nobody can say what I might have been had I had this or that intervention in the past, I would still have been the same person inside I am sure. My dad gave me a hard time because I think he projected onto his children a desire for a success he never had, but there are some things where he was supportive. My schools always used to write in reports about my lack of social involvement, but my dad said, if that is the way he wants to be, that is the way he wants to be.
I do not believe autism can be cured. If I were to have a stroke tommorrow, I would equally have to live with that. You can regain capacities, you can improve on things, but you cannot ever become something you are not.
Those who accuse us of wanting to leave everything as it is, have an agenda which necessitates painting us in a bad light. It is simply not true.
Cure and treatment are not synonimous, there is a middle ground of “amelioration” If I were to have a stroke tommorrow, I would equally have to live with that. You can regain capacities, you can improve on things, but you cannot ever become something you are not.
I also live with the consequences of physical diversity. Many people speculate that there are hypermobile syndromes that seem to parrallel autism in some of us. I don’t know the true prevalence, but I do know that I am one of them.
When I was younger I can recall hypermobility being described as a medical disability, and I could not concieve why because I thought that it was great that my limbs could bend in so many different ways that others could not. Now I am older, I am beginning to realise what the legacy is … ouch !
The disability movement has a way of describing non disabled people, the word is “temporarily able bodied”
You see perfection is not normal at all.
Anyway it is not just Einsteins mathematical genius that I appreciate, it is the way he was committed to peace, the way he used his celebrity.
As for the hairstyle, I guess like me he needed a haircut 🙂
I guess the key is I’ve written about 3 BASIC political roads and there are clearly many more combinations.