Donna Williams speaks out about autism and neurodiversity.
Kate Boundy is a graduate student from Florida Atlantic University doing a dissertation on women and the neurodiversity movement. I was one of her interviewees. Here’s our interview: Â
Personal Questions/Paths to Diagnosis:
KATE BOUNDY:
What was your pathway to your current diagnosis like?
DONNA WILLIAMS:
1965: Diagnosed as psychotic at age 2 in 1965 at St Elmos Private Hospital, Brunswick, Vic, Australia.
1970s: Assessed by Psych and Guidance team as ‘disturbed’ some time in mid-late childhood.
1972: Diagnosed with language processing disorder around 1972 and again in 2006.
1973: Teacher suggested autism to my parents around 1973
1972: Health interventions around 1972 (zinc, vit C, multivitamin/minerals)
1991: Diagnosed with autism by Dr Lawrence Bartak, Monash Medical Centre, Clayton, Vic, Australia
KATE BOUNDY:
When were you first diagnosed?
DONNA WILLIAMS:
1965, aged 2.
KATE BOUNDY:
What diagnosis were you given?
DONNA WILLIAMS:
Childhood psychosis
KATE BOUNDY:
Were you given other diagnoses over the years before obtaining your current diagnosis/diagnoses?
DONNA WILLIAMS:
Those under the age of 3 diagnosed psychotic or disturbed would usually today be diagnosed with autism. It was the semantics of the 60s and 70s which had changed by the 80s.
KATE BOUNDY:
Do you agree with your current diagnosis?
DONNA WILLIAMS:
I feel autism doesn’t exist. I feel autistic is an adjective for a type of withdrawal, encapsulation, a style of development and behaviours.
I feel I had visual/verbal/body agnosias (sensory perceptual disorders), that these and co-morbid mood, anxiety, compulsive disorders since age 2-3, together with immune deficiencies since 6 mths (and measles and mumps at age 2), against a developmental backdrop of marked neglect, abuse, trauma and loss (my mother was an emotionally disturbed alcoholic who probably had post natal depression) alcohol damage in utero and inheritance of genetic issues from a paternal line of two generations of first cousin marriages contributed to a combination of challenges. In combination, I feel these challenges were so overwhelming to my physical, neurological, emotional, social and communication development I had a kind of developmental derailment. I believe that derailment resulted in a different developmental path which was an autistic (as in the adjective) one.
KATE BOUNDY:
If you were previously misdiagnosed with another condition, what is it you feel is more accurate about your current diagnosis?
DONNA WILLIAMS:
My diagnosis as psychotic at age 2 was the result me appearing deaf, staring through people and compulsively tensing my stomach muscles and compulsively coughing against this resistance to the point of coughing up blood (self injurious behaviours). As such I believe the diagnosis as psychotic was due to medical ignorance at that time about visual/verbal agnosias and Tourette’s in toddlers. I feel however that if today the same type of child was diagnosed with autism, that would also be ignorant even though ‘autistic’ would be correct. In other words, I had presented with health issues (bruising, bleeding gums, eyelashes falling out), with Tourette’s tics, with verbal and visual agnosias so I’d like to think we’ll evolve to a place where specialists can diagnose WHAT conditions are presenting ‘autistically’ rather than looking for ‘symptoms of autism’ or, as it was in 1965, ‘symptoms of childhood psychosis’.
I feel that in mid-late childhood my behaviour was disturbed and that the isolation and chaos of my conditions and the environment’s inability to understand or work appropriately with these did lead to emotional disturbance. I think it was wrong to cast aside my emotional disturbance when I was formally diagnosed with autism because in my case the issues that comprised my ‘autism’ had, until they were managed and adaptations made use of, made me emotionally disturbed.
KATE BOUNDY:
What do you see as the benefits and downsides to obtaining an official official diagnosis?
DONNA WILLIAMS:
It helped me look beyond the labels of psychotic, disturbed, autistic, to learn about ‘autism fruit salads’ and from that understand the vast diversity of children and adults diagnosed on the autism spectrum. It also helped me to rebel and assert where my ‘autism’ differed from my personality and so reclaim my personhood, that I am more than any label or condition.
KATE BOUNDY:
In your experience, are there any differences in the paths men and women follow when seeking an official diagnosis, particularly of an autistic spectrum disorder?
DONNA WILLIAMS:
As toddlers, no. As adults, yes. The women are still less likely to neatly fit the stereotypes and if they get too emotional, appear too insightful etc, they seem more likely to be dismissed when seeking a diagnosis.
Neurodiversity Questions:
KATE BOUNDY:
When did you first hear of or how did you first become involved with the neurodiversity movement?
DONNA WILLIAMS:
Many who joined the movement after the mid 90s don’t know that I am one of the founders of the movement. It was me, Jim Sinclair and Kathy Lissner-Grant in 1992 who began ANI (Autism Network International) as the first global self advocacy group run by people diagnosed on the spectrum. This was before the online forums, before all the splinter groups. We were the first group. Before us was only MAAP (More Advance Autistic People) which was parent run but we wanted the voices of those with autism to lead, to show we could do this for our own people.
Jim became the most outspoken in the neurodiversity movement with his iconic ‘Don’t Mourn For Us’ paper. Kathy remained a welcoming committee and my job was to use my public profile like a beacon so people would know how to find ANI and link up. But by 1996-98 they had created their own offshoots.
Coming from a position of someone with significant health issues, co-morbids and agnosias, I empathised with families who wanted treatment and so, whilst I equally advocated for recogition of our equality, our right to be ourselves, use our own systems, I never became part of the war between culturalists and cureists. I was criticised for this, sometimes very publicly hated, but I had to be who I am.
Today I’m accepted by many in both the culturalist and cureist movements (and equally hated by zealots in both camps). I don’t want to erradicate autism. I don’t support a cure for ‘autism’ but I do support treatment and cure for disabling health conditions such as immune disorders, and gut disorders like Coeliac, Crohns, Ulcerative Colitis and detox disorders like severe Salicylate Intolerance etc.
I support treatment for health disorders, co-morbid disorders, sensory perceptual disorders, disabling neurological impairments etc. If individuals or families chose cure routes for these things I would accept that and if it reduced their child’s ‘autistic’ presentation so be it. I also distinguish between autistic looking personalities and ‘autism’ and I distinguish between dyspraxia and autism and between social emotional agnosia and autism…. in other words, I see a day where the word autism will be looked at the way we look at the terms ‘childhood psychosis’ or ’emotionally disturbed’. We’ll realise we were learning about diversity and that we had far more differences than we had similarities, only the struggles for services, equality, the right to be oneself were our commonalities.
KATE BOUNDY:
What do you see as the most central tenets of the neurodiversity movement? What has its greatest cultural impact been so far?
DONNA WILLIAMS:
It has helped some people have pride, find belonging. It has confused others who have joined it but then rejected it as too extreme, too focused on stereotypes to the degree they felt they had to play down their differences, conform, and felt at risk of losing their identity and individuality.
The movement welcomed many but as aggressive extremists dominated some forums, making themselves spokespeople for all, it developed a war monging air to it, a stigma of ‘hate groups’. There was often overindulgence in self pity and resentment to the degree that for some it seemed to take a long time for them to consider diplomacy and those who did were seen as ‘weak’ or despised as ‘moderates’.
I think its greatest cultural impact has been to help people recognise autistic traits in much of society and the valid reality that there are a significant percentage of those on the spectrum who don’t require treatment or interventions, just advocacy, understanding and adaptations.
KATE BOUNDY:
How has this movement and/or the ideas coming out of this movement affected you personally?
DONNA WILLIAMS:
I’d have to say that it didn’t become what me, Kathy and Jim envisioned. We envisioned something more inclusive. Our vision was one of building bridges, not declaring wars, of bringing autism-friendly non-spectrum people into our circles, of diplomacy, a sharing of cultures. We all detested the division between ‘high’ and ‘low’ functioning and saw us all as different but equal and none of us saw the way forward as being flag waving figures like Einstein or Newton or boasting high IQs. We felt we had enough heros in our own ranks and wanted them to have a voice, to be known. We celebrated our differences not just our similarities. We were delighting in smashing all the stereotypes, not playing up to them, and certainly not creating new ones. We never talked of ‘one voice’. I guess our vision was more John Lennon, more Martin Luther King Jr, less Malcolm X, more Ghandi, less Mugabe.
I guess I’m still watching the movement transition, lose its novelty factor, watching the war horses separate from the diplomats. Yeah, I’m watching. I’m also very much my own movement. I’m about deconstructing the labels themselves. So, I guess I’m a maverick, not a follower.
KATE BOUNDY:
Are there any aspects of the goals/tenets that you think are problematic? If so, what are they and why do you see them as problematic?
DONNA WILLIAMS:
The new stereotypes are flimsy. They are already falling apart. Those most public seem full of rhetoric or repeating the same lines, saying nothing new, not being innovative, afraid to cross any lines of exploration. I’m a sociologist but many are behaving like politicians or psychologists. They’re not looking holistically and not daring to embrace difference where it might deconstruct the labels themselves. Deeply loving a label, building your entire selfhood, identity or career on it, is a very blind route. I’m know for my autism, I’m an autism consultant and public speaker, my books are associated with autism, my art and music are valued because they speak of autistic realities. But I have always tried to be more, to be Donna, to sing, write poetry, paint, sculpt about things way beyond autism. With The Aspinauts we do songs about environmentalism, war, feminism, globalisation, media.
KATE BOUNDY:
What would a culture that truly honored neurodiversity look like?
DONNA WILLIAMS:
We already have it. There are wonderful people in the community who accept neurodiversity without ever being pressured to do so… its their nature as personalities. There are other personalities who could never embrace neurodiversity because that’s just who they are. But it’s a myth to think that the latter are non-spectrum. I’ve met those on the spectrum who detest difference and disability and are disgusted, even traumatised to learn or face their own neurological differences. So it comes down to personalities and waiting for some nirvana in which all conservative Xenophobic personalities are eradicated or supressed doesn’t sound like my egalitarian nirvana. It doesn’t sound like ‘truly honored neurodiversity’ because even Xenophobes are neurodiverse… lets face it, they aren’t everyone, and we can’t completely unmake a Xenophobe, therefore they are part of neurodiversity.
KATE BOUNDY:
How would the lives of both those who identify as neurodiverse and those who see themselves as neurotypical be different in such a culture?
DONNA WILLIAMS:
There are those on the spectrum who insist on hiding their neurodiversity, sometimes even from themselves, because they are simply averse to ‘difference’ and see it as ‘damage’ etc. So I don’t accept there are those who are one or the other, not at all. Get close, very close, to anyone ‘neurotypical’ and you’ll find a degree of neurodiversity whether its that they are coffeeholics, diabetic, have a phobia of baldness, have fetishes etc.
KATE BOUNDY:
What kind of structural change might have to take place?
DONNA WILLIAMS:
To achieve some biblical truly honored neurodiversity at a broad cultural level you’d have to create a holocaust in which you killed off all with Xenophobic, even strongly conservative-conformist tendencies. I’m a Taoist. I don’t dream of such ‘nirvana’ because to me that sounds like a bland, dictatorial hell. I can live with the knocks, with the Xenophobes and rigid conservative conformists. They are part of the tapestry. We help each other define who we are, fight for who we are, agree not to sameness but to a truce. I forgave ‘them’ their world in my 20s, long after most who had ever abused me had already forgave me mine. I do take the Xenophobes and conservative-conformists to task, just as they try to with me. That’s part of life. It is abrasive, and sometimes its smooth sailing. But I don’t dream of a nirvana in which I’d have to become their judge, their master, dictating their cultural values.
Gender Questions:
KATE BOUNDY:
How many people in the movement do you know? Of these, how many are women and how many are men?
DONNA WILLIAMS:
Plenty.
KATE BOUNDY:
Do you perceive a difference in their activism? If so, describe the difference.
DONNA WILLIAMS:
There are extremists, zealots, egalitarians and diplomats amidst both genders. It is a stereotype to think the men are more war monging. Some of the most damaging and extremist have been women.
KATE BOUNDY:
Do you perceive any changes in who is being singled out by the media, etc to represent the movement over time? If so, please describe.
DONNA WILLIAMS:
Before I’m lynched, let me say that on a personal level, I’ve spent time with Temple and as a person, I like her as much as most human beings, no more, no less.  Nevertheless, Temple Grandin is the ‘autistic’ most used to represent the neurodiversity movement. But my view is that this is because she utterly toes the line. She nevers rock the neurodiversity boat. She’s never challenges the movement. She introduces herself not as a person with autism but as ‘an autistic’ and proclaims that all of her value is due or traceable back to her autism so she is totally identified with it. That is the neurodiversity movement’s version of a post child.
Temple doesn’t distinguish her obsessive-compulsive personality nor Social Emotional Agnosia or Alexithymia or being a solitary, forthright personality or a masculine woman from her autism. To her they are one and the same and that helps call it all ‘autism’, which I think is utterly unhelpful and stagnates the field.
Whilst she has been treated for depression and panic disorder, Temple otherwise lacks any significant co-morbid disorders, health issues or severe sensory perceptual disorders (such as visual-verbal-body agnosias or aphasias) so she’s much easier to put forward as an archetypal ‘autistic’. And she’s from the ‘right’ social class. Her lineage is well educated with high IQ, good early access to nannies and therapists. It’s an utterly tidy background, quite homogenous. There’s no untidy class issues or social issues to juggle.
Her personality is fixated on ability and achievement, reason and logic. She is able to proclaim high IQ and is at ease to speak of herself in the same sentence as Einstein. She achieved PhD level and in an industry outside of autism (slaughter industry and animal husbandary). She’s American which makes her the iconic representative of the largest English speaking population and that which dominates media representations of autism and the neurodiversity movement. All of this makes her ‘a safe bet’.
But Temple represents only one form of autistic development, or ‘autistic’ personality, of ‘autistic intelligence’. And she’s not holistic and her long term hands-on work has been with cows, not autistic children so she doesn’t have much more than her own experience to draw upon or those she meets through conferences or online. It’s not the same as those who have long term hands on experience way beyond their own case. So, for example, she has written in published works and proclaimed in public interviews in the past that all autistics need more stimulation, that all autistics think in pictures, that augmented communication is a sham, that those who appear ‘low functioning’ have mental retardation and so forth. She’s ultimately had to retract all of these sorts of statements but ideally I’d have preferred that she’d have had enough in depth, hands-on involvement working with those with autism (instead of cows) that she’d have learned the limitations of her statements before needing to retract them. So however iconic and useful the neurodiversity movement has found her, these sort things put some limitations on the value of her input to the field in general.
KATE BOUNDY:
How do you perceive your own participation? Do you believe your participation and/or particular movement related interests are shaped by your gender? If so, how?
DONNA WILLIAMS:
I feel I have been able to say more things than a male could have. Being female I’m more forgiven for being outspoken but also more susceptible to being dismissed as nuts. There’s both a gender and classist element there. From men, I’ve been a traget on both accounts. From women, I’ve been a target from a classist aspect.
KATE BOUNDY:
Do you see any differences in the social/cultural expectations applied to men with autism as opposed to women with autism?
DONNA WILLIAMS:
Yes. Women can be blunt and outspoken and it’s often laughed off. Men who do the same are often seen as more of a threat. Men, however, can be solitary and detached and it’s accepted as ‘male’ but women who are solitary and capable of great logic and detachment are not as accepted. Similarly, sensitive, aloof men are far more bullied where the same in women has made them victims of sexploitation and abuse or part of missing out on a diagnosis.
KATE BOUNDY:
Are there any misconceptions about women within the neurodiversity, about the neurodiversity movement in general, or about women with your diagnosis that you would like to correct?
DONNA WILLIAMS:
It’s a misconception that we speak with ‘one voice’; that there is a division between those who are neurodiverse and those who are neurotypical (as opposed to a scale or matters of degree).
Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.myspace.com/nobodynowherethefilm
http://www.donnawilliams.net
http://www.aspinauts.com
Very informative. I agree with your perspective.
We cannot afford counselling, etc. No insurance. But, your freely shared, from-the-heart insights are more valuable than what we would probably be able to pay for locally – if we could. Thank you.
Could you elaborate on what you think the neurodiversity movement should look like? You seem to be critical of anyone who forms his or her own group.
Hi Alex,
could you please show me the phrases where I’m critical of ANYONE who forms his or her own group?
Perhaps I’m overlooking something.
I’m not at all critical of people forming their own groups.
If so I’d have to dislike that Jim, Kathy and I started ANI or feel we disliked every groups since.
That’s certainly not the case.
I am egalitarian, inclusive, communal, diplomatic and seek to build bridges not battles.
As such I’m anti-supremacist. I am anti-separatist. I don’t like war monging.
So there are bound to be some kinds of groups I won’t go near and I find others wonderful.
What a neurodiversity movement should look like?
I feel we actually have one, its called the human race and is utterly full of neurodiversity between and WITHIN any groups, labels, boxes, collections….
I feel that when we use bigotry and stereotypes to single out personality traits and attribute them to any one group in order to justify separatism, us and them, supremacy etc (ie: all NTs are X, Y, Z) then I find that very ‘redneck’, self serving and immature. I can always find exactly the same X, Y and Z in the very people making the claims. But when dogmatic, self serving, self righteous and biased they can’t see it.
This is a very interesting discussion. It’s interesting that there are those who refer to THE ‘neurodiversity’ movement or A ‘autistic culture’ or THE ‘autistic community’ etc etc
I too have watched and continue to watch the many movements, cultures, communities, societies of both neurodiverse and neurotypical peoples popping up around the world…in all manner of spaces and places…in virtual spaces, media spaces, community places, health places, intellectual spaces, government spaces of policy construction, legal spaces, institutional places…I think you get my point!
I am also a watcher and explorer of many other ‘movements’…cultural movements of oppressions such as those of indigenous peoples around the world, those of (dis)ability or differeing ability, those of different sexuality/gender and so on.
The world is made up of many shifts in social and cultural movements at all times. To even suggest that there is A neurodiversity movement seems limiting in itself…to use the shifts in womens position in the world as an example, it’s a little like suggesting there was THE ‘feminist movement’ in the 1970’s when in reality there have historically been many different shifts in gender balance seperately and simultaneously all around the world in many times of the past and present and most likely into the future.
I’m not sure WHAT the ‘neurodiversity’ movement actually is myself.I see alot of discussion and shifts in thinking relating to both ‘normality’ and difference of this thing called autistic. Thus, to me there are many ‘movements’ occurring which have members who consider themselves neurodiverse or autistic. I think it’s great for individuals to find others they can feel a ‘place’ with and to create ‘spaces’ where its alright to be different. I think it’s great if some individuals advocate for the rights of people who are being oppressed or disadvantaged. I think it’s great to throw open the doors of social reality and continue exploring the range of difference in humanity. There are a great many posiitives…
There are some negatives too as Donna often discusses…and I don’t see any harm in keeping it in balance by remembering that difference crosses through and beyond the neurodiverse and neurotypical.
Additionally, I see no harm in ‘critiquing’ movements or individuals within them, if critique is to assess the positives and negatives of something…
Have you told a normal person how boring they are today? 🙂
I don’t know any ‘normal’ people. Every human I know is extraordinary and unique in some ways. I do however meet dogmatic, bigoted, judgmental, conformist, self righteous twats who bore me stupid but any and all of them are spread within and beyond the spectrum and non-spectrum populations.
Any sort of movement like this reminds me a little of Monty Python’s Life of Brian (paraphrased):
Brian: You’re all invdividuals!
Crowd: We’re all individuals!
Solitary Person: I’m not..
It is human nature to want to create groups to allow us to identify “us” and “them”, it’s pretty tribal and I think is too deeply rooted in us to change any time soon. But that doesn’t mean it should be protected from criticism!
Politicising a Health Issue does not help. Either you Educate yourself and work from the position of that empowerment, or you go it alone, or you try your luck with the snake-oil salesmen. I remember reading a letter in New Scientist from some woolly liberal or other saying she was outraged at a “discriminatory description” of a person with Autism. In the next issue an Autistic wrote in saying, speaking for himself, he didn’t see the point in pretending he didn’t have a Disability.
🙂
Dear Ms. Williams:
You might find the great philospher Ludwig Wittgenstein had a very useful idea about classifications. He said many of them are really about “family resemblances.”
Most of the articles on the web seem to tell you too much about arguments between philosophers. So I am trying to copy some passages from Wittgenstein’s “Philosophical Investigations.” You may find these passages useful in thinking about “autism” as a classification.
Just before these copied passages, Wittgenstein says that the meanings of many (but not all) words can be thought of as their use in the language we speak. To get a good look at this use, he says we can think of language as playing games with words. Then he says, and I copy his passages:
…
Here we come up against the great question that lies behind all these considerations. – For someone might object against me: “You take the easy way out! You talk about all sorts of language-games, but have nowhere said what the essence of a language-game, and hence of language, is: what is common to all these activities, and what makes them into language or parts of language. So you let yourself off the very part of the investigation that once gave you yourself most headache, the part about the general form of propositions and of language.”
And this is true. – Instead of producing something common to all that we call language, I am saying that these phenomena have no one thing in common which makes us use the same word for all – but that they are related to one another in many different ways. And it is because of this relationship, or these relationships, that we call them all “language”. I will try to explain this.
Consider for example the proceedings we call “games.” I mean board-games, card-games, ball-games, Olympic games, and so on. What is common to them all? – Don’t say: “There must be something common, or they would not be called ‘games'” – but look and see whether there is anything common to all. – For if you look at them you will not see something that is common to all, but similarities, relationships, and a whole series of them at that. To repeat: don’t think, but look! – Look for example at board-games, with their multifarious relationships. Now pass to card-games; here you find many correspondences to the first group, but many common features drop out, and others appear. When we pass next to ball-games, much that is common is retained, but much is lost. – Are they all “amusing”? Compare chess with noughts and crosses. Or is there always winning and losing, or competition between players? Think of patience. In ball games there is winning and losing; but when a child throws his ball at the wall and catches it again, this feature has disappeared. Look at the parts played by skill and luck; and at the difference between skill in chess and skill in tennis. Think now of games like ring-a-ring-a-roses; here is the element of amusement, but how many other characteristic features have disappeared! And we can go through the many, many other groups of games in the same way; can see how similarities crop up and disappear.
And the result of this examination is: we see a complicated network of similarities overlapping and criss-crossing: sometimes overall similarities, sometimes similarities of detail.
I can think of no better expression to characterize these similarities than “family resemblances”; for the various resemblances between members of a family: build, features, colour of eyes, gait, temperament, etc. etc. overlap and criss-cross in the same way. – And I shall say: ‘games’ form a family.
…
But if someone wished to say: “There is something common to all these constructions – namely the disjunction of all their common properties” – I should reply: Now you are only playing with words. One might as well say: “Something runs through the whole thread – namely the continuous overlapping of those fibres.”
…
For how is the concept of a game bounded? What still counts as a game and what no longer does? Can you give the boundary? No. You can draw one; for none so far has been drawn. (But that never troubled you before when you used the word “game.”)
“But then the use of the word is unregulated, the ‘game’ we play with it is unregulated.” – It is not everywhere circumscribed by rules; but no more are there any rules for how high one throws the ball in tennis, or how hard; yet tennis is a game for all that and has rules too.
How should we explain to someone what a game is? I imagine that we should describe games to him, and we might add: “This and similar things are called ‘games'”. And do we know any more about it ourselves? Is it only other people whom we cannot tell exactly what a game is? – But this is not ignorance. We do not know the boundaries because none have been drawn. To repeat, we can draw a boundary – for a special purpose. Does it take that to make the concept usable? Not at all! (Except for that special purpose.) No more than it took the definition: 1 pace = 75 cm. to make the measure of length ‘one pace’ usable. And if you want to say “But still, before that it wasn’t an exact measure”, then I reply: very well, it was an inexact one. – Though you still owe me a definition of exactness.
“But if the concept ‘game’ is uncircumscribed like that, you don’t really know what you mean by a ‘game’.” – When I give the description: “The ground was quite covered with plants” – do you want to say I don’t know what I am talking about until I can give a definition of a plant?
…
[Marginal note by Wittgenstein: Someone says to me: “Shew the children a game.” I teach them gaming with dice, and the other says “I didn’t mean that sort of game.” Must the exclusion of the game with dice have come before his mind when he gave me the order?]
One might say that the concept ‘game’ is a concept with blurred edges. – “But is a blurred concept a concept at all?” – Is an indistinct photograph a picture of a person at all? Is it even always an advantage to replace an indistinct picture by a sharp one? Isn’t the indistinct one often exactly what we need?
Frege compares a concept to an area and says that an area with vague boundaries cannot be called an area at all. This presumably means that we cannot do anything with it. – But is it senseless to say: “Stand roughly there”? Suppose that I were standing with someone in a city square and said that. As I say it I do not draw any kind of boundary, but perhaps point with my hand – as if I were indicating a particular spot. And this is just how one might explain to someone what a game is. One gives examples and intends them to be taken in a particular way. – I do not, however, mean by this that he is supposed to see in those examples that common thing which I – for some reason – was unable to express; but that he is now to employ those examples in a particular way. Here giving examples is not an indirect way of explaining – in default of a better. For any general definition can be misunderstood too. The point is that this is how we play the game. (I mean the language-game with the word “game”).
And there the quotes end.
I do not know if this is too abstract for your brain’s processing methods. I know you have more trouble getting ideas in than in writing them out. Perhaps you can talk about this with a friend, and find it useful in thinking about “autism” and about your idea of a “salad” of “autistic traits.” If it is not useful, just forget about it. What you say about the “autistic salad” is perceptive and true. Wittgenstein’s notion of “family resemblance” might make it easier to answer your critics, that’s all.
Yours very respectfully,
Frank John Reid
way too many words for me Frank, but its the thought that counts 🙂
warmly,
Donna *)
I have got to the point where I avoid joining most groups. Rather I work with them when we have some goal in common and avoid them when I don’t. It’s not that I have anything against other people joining or forming groups. It’s just that by now I have found that they become entangling, they expect things I have no energy to give, they try to enforce stereotypes I have no room for in my life, and try to squeeze me until there’s nothing left. So I do what I do alone, and if a group comes along that wants to do the same thing, I will do it along with them and then part when we are done. If I get to know people I do it as individuals. Groups have wrung me to the point of exhaustion.
As a woman with many physical, health, and cognitive problems/differences besides the ones that get me called autistic, and who has a psych history, is lesbian, mixed-class, etc. I really understand what you mean about discrimination. People want us to be tidily swept into an autism box and nothing more, and if we are different in many other ways, we get called inadequate, too autistic, not autistic enough, etc. And people want neurodiversity to be all about autism and autism alone when it’s a word that means far more than autism.
Meanwhile when I ended up on television equal amounts of people… many from the so called neurodiverse community said I was too autistic or too low functioning (not my word!) and therefore made autistic people look bad. (If that’s neurodiversity I don’t want it.) Then an equal amount of people said I was not autistic enough and too high functioning (also not my word) for them. And I want no part in that mentality either. Then a small but vocal group of people said that I wasn’t autistic at all because not fitting enough stereotypes, and that is worse than the other two combined. What none of them got was I never asked to be representative of all autistic people. Never claimed my experiences were universal. In fact I think my experiences only fit a small group of people considered autistic. But I was trying to get out there the idea that all kinds of people were valuable. My video was made for a girl with cerebral palsy not autism. It was also made for everyone who gets discounted for communicating differently whether disability or ethnicity or anything else.
And everything got warped beyond recognition. But underneath the distortions I still remained, quite real and quite different from what people saw.
you so got it when you wrote about people wanting ‘autistics’ to be ‘poster children’ types, neat, tidy, AS IF ONE AUTISM EXISTS, but autism is a fruit salad including personality, environment, community… the whole deal. The lack of holistic perspective in the autism field is tiring, tedious and self defeating for those imagining they are seeking knowledge because usually what they mean is they subscribe to the ‘one autism’ and ‘one magic bullet’ theory, which is simplistic and ignorant, not to mention reductionist… ha ha, having a good day obviously 😉
And re neurodiversity, yup, if I try and point out the neurodiversity of the human population I’m considered a blasphemer… autism is such a religion these days.
No autistic person represents others, certainly none represent all! And some have the self righteous audacity to put their child forward as ‘the face of autism’ (as opposed to ‘a’ face of autism) and I’ve worked with hundreds of kids and adults with autism and no one of them is THE face of autism.
One day people will say, this is dyspraxia, this is speech aphasia, this is selective mutism, this is agnosia, this is co-morbids, this is health issues, this is family dysfunction, this is personality disorder, this is dissociative disorder etc presenting individually or in combination AUTISTICALLY, Until then, we’ll watch cats chase their tails.