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:  

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