Fiona Crosby is a second year English Literature student at Teesside University currently doing an assignment on The Representation of “disability”.  She wanted to ask me questions in relation to the representation of “autistic presence” in contemporary cultural forms.  This is our interview:

FIONA CROSBY

1. How do you view “autistic presence” as being represented in contemporary cultural forms such as, autobiographical accounts/personal accounts and the way autism as a “group” is spoken for or on behalf of in society/cultural forms?

DONNA WILLIAMS

Ooo, well, I think its a new thing. I remember around 1992 or so I flew to St Louis to meet the only other ‘high functioning’ woman with autism I could find outside of Temple Grandin. It was prior to people generally having the internet or email. That woman was Kathy Lisssner, and fellow autie, Jim Sinclair drove across from Kansas to join us. We spent a few days together there and lamented that there was no way people ‘like us’ could find each other throughout the world. We formed ANI, Autism Network International, there in Kathy’s apartment and it was ANI that really started the autism-as-culture phenomena. It was certainly not intended that way. It was merely a means of us all finding each other, reducing isolation and sharing our own individual autism stories.

I think any new culture has teething problems and clamours to claim new stereotypes. That’s what the autism-as-culture movement did, and many of the new stereotypes simply don’t fit all people with autism and can do as much harm as the old stereotypes. Also, I think the voices of those with Asperger’s and those who self-identified as Aspie or Autistic, tended to dominate so I don’t think that the ‘culture’ was generally not equally represented by people with extremely diverse developmental histories.

What also emerged from the autism-as-culture movement was a shift from a submissive position to one that was at first rife with fairly funny satire about non-spectrum people but soon escalated into some pretty ugly reverse prejudice against non-spectrum people. That’s not something that attracts me at all. If autistic culture is about getting the boots in toward non-spectrum people, count me out. Fortunately, this does not represent moderates in the culturalist movement who are largely a fairly humane and egalitarian bunch.

FIONA CROSBY

1. One thing that struck me when reading “Nobody Nowhere” is not only the significance of the title but how your autobiography presentated/illustrated the “neurotypical” reaction to your behaviours as a child. How in order to understand behaviour that fell outside of the “norm”, “normal” people’s reaction was to try and attach a label, consequently you were labelled “mad” or examined to see if you were deaf, all in a bid for “normates” (as Nadesan describes us) to try to understand what they could not fix a label to. You also describe in you autobiography the fact that you took on other peoples identities such as “Carol” in order to cope with what was “stereotypically” expected of you. How would you identify yourself within this context, did you feel that you were “different” from the norm yourself and try to attach your own understanding and meaning to who you were?

DONNA WILLIAMS

Great question. I grasped that people on the TV were ‘not broken’ and that just as people didn’t want a broken biscuit that there was something dirty or wrong about being a broken person. Even when I was about 2 my mother was dressing up my older brother and taking him out on alternate days as the boy and then as the girl, so this feeling was something that was before I could reason. The people on the TV didn’t need hitting or tying up (it was the 60s and there was no treatment for children deemed psychotic or disturbed). And I remember the girl from down the street would swim in our pool and my mother would photograph her as she posed for the camera and I knew this ‘displaying’ thing was part of being ‘not broken’. So Carol was based on a girl in a park who had taken me home once and after that the name became a catch all for any TV character who behaved girly and outgoing. So Maryanne from Gilligan’s Island was also ‘a Carol’ and so was Marcia and Jan in The Brady Bunch and a whole load of similar flouncing, outgoing girly characters. So if I was self contained, socially agitated and defensive or bizarre and in my own world, I could assume this ‘Carol’ character and try and do as I was ordered and ‘act normal’. You could almost say that Carol was a product of early ABA and that clearly it doesn’t cause integral change even if the person can perform actions they don’t understand. But although I had the FEELING I was a ‘broken person’, I didn’t have conscious reflection on this until around age 9-11 when I began to understand and construct simple meaningful sentences (prior I was largely echolalic). At that point I felt alien, a freak. I think the true feeling of inequality set in. I could clearly see other children struggled to understand or relate to me but more importantly, that I was something discarded. Its hard to describe but it was real invisibility, where virtually nobody says hello or even bothers with you and the few who do feel sorry for you. It was a tough time.

FIONA CROSBY

1. There has been much debate as to whether or not “autism” as a condition may have existed prior to it being given a label. As a society in general we seem to have a need to categorise something in order to fix meaning to it. How do you view autism in context with this and would you agree with it?

DONNA WILLIAMS

Psychotic children existed since at least the 40s and 50s and were still diagnosed as psychotic in the 60s and in the old dictionaries autism is defined as a form of childhood Schizophrenia. Autism was first thought to be a form of childhood psychosis, then, in the 70s a form of emotional disturbance. But the ‘autistic’ part was deemed more an adjective than a condition. So one was a psychotic or disturbed child displaying autistic behaviours. So autistic withdrawal for example was long used in descriptions before autism became popular as a diagnosis and autistic withdrawal is still described in those with some forms of Schizophrenia although autism itself is now disassociated with Schizophrenia (though the two may co-occur and around 20% of adults on the autism spectrum are also diagnosed with Schizophrenia).

I think the condition of autism probably doesn’t actually exist. For example, if you removed all agnosias, all sensory integration disorders, all dyspraxias, all speech apraxias and aphasias, all Selective Mutism, all gut, immune, metabolic disorders and all mood, anxiety and compulsive disorders, all personality and identity disorders, all Alexithymia, all Catatonia, all Anhedonia, all Hypotonia, all Dyslexia, all Learning Disability, all learned helplessness from all people with the diagnosis, then those once diagnosed as autistic would’nt appear very autistic anymore. So what that means is that autism is a syndrome underpinned by different combinations and quantities of ‘fruit salad’. So our current preciousness of the label is really a funding thing but also an identity thing and people will do some really disordered vicious stuff trying to define all autism as their own version or that specifically of their child. But I think that in 10 years we’ll view Autism the way we now view MPD (which has been replaced with Dissociative Identity Disorder). That its a social construct.

FIONA CROSBY

1. Initially “autistic presence” seems to have been very much “spoken for and on behalf of” and constructed through medical and psychological research which explored the condition to “understand” it and attach its own meaning to it. Do you feel that prior to this there was an autistic presence, do you think that these earlier representations were deconstructive in representing autism or did they help pave the way for individuals with a diagnosis such as yourself and Amanda Baggs to assert their own autistic presence?

DONNA WILLIAMS

In the early 90s before most homes had internet, I met the only two high functioning diagnosed people with autism who I knew of in the world – Jim Sinclair and Kathy Lissner. We were totally fine with our own very different developmental histories, cognitive and sensory and personality differences etc and none of those differences had us question the validity of each other’s formal diagnosis with autism.

I think that since the internet and the progressive tension in the culturalist movement, that they’ve replaced society’s one-size-fits-all stereotypes of autism with their own self serving ones. I love defying the stereotypes. I’d even call it a passion and a hobby. But it shakes people up a lot. It inspires some and feeds hatred in others. But I can point to so many of the autistic kids I’ve seen as an autism consultant and every one of these kids will have something that’s outside of a given stereotype and by adulthood and after interventions some of those kids will have even more things outside of the stereotypes and still essentially have some personality, sensory perceptual, or cognitive features of autism.

FIONA CROSBY

1. Many of the representations of autism tend to focus on it as a negative thing which needs to be “cured”.   There is an article on the front page of the Daily Mail today which reads “Have we found the cure for Autism?” Do you see these representations as negative or do you view any representations of autism as a positive, in that they keep it in the public eye which means more research and better acceptance and understanding?

DONNA WILLIAMS

Hmm, does research lead to better acceptance and understanding. I don’t think so, sorry. With 80-90% of adults on the spectrum unemployed, clearly research isn’t helping those people break down the walls caused by the ‘wierdo factor’ in which most people just don’t like what they see as ‘broken people’, or certainly don’t want to house them, feed them, befriend them without significant financial compensation. It doesn’t stop mothers being sneered at in supermarkets and then isolating the child in the home. It doesn’t stop people getting all anal when someone has a skill in one area or situation but not in all others. As for cure, we’re probably talking eugenics there and eugenics and acceptance don’t go together. I’m fine with strategies, management and treatment which helps people function best AS THEMSELVES. I’m also fine with cure of health conditions like gut, immune or metabolic disorders. But beyond that there is a real question mark when it comes to cure in the context of acceptance and understanding.

FIONA CROSBY

1. Was your own understanding of autism and how you saw yourself influenced by these earlier representations of autism? Do you view representations through cultural forms such as autobiographical/personal accounts as fundamental to forging an autistic presence which is more representative of how individuals view themselves and others like themselves, their place in society and the rights a society claims to ensure its citizens?

DONNA WILLIAMS

Was I influenced by earlier representations of autism? Well, the only other autobiographical account in the English language when Nobody Nowhere was published was that of Temple Grandin and this was in educational areas, not a book in the general public arena, so it wasn’t accessible. In any case my own account, being the second one ever published in English, was extremely different to Temple’s at every level.

She had tantrums, didn’t speak until age 3, had poor articulation akin to Oral Dyspraxia, was assessed as brain damaged at age 2-3, went to a school for disturbed children and went on to become an engineer. I had echolalia since 18 months, got functional speech by late childhood, was assessed as psychotic at age 2 and then as emotionally disturbed and became a writer, musician and artist. She reports being a visual thinker and can internally mentalise with ease.  I can’t mentally visualise, struggle to internally mentalise but think kinaesthetically and in movement. She felt she needed higher levels of stimulation. I suffered from extreme exposure anxiety and was easily overwhelmed by prolonged engagement with others. She could fluently process language. I was being tested for deafness up to age nine and was also diagnosed with a severe receptive language processing disorder. Our personalities are remarkably different. I’m exuberant, naturally non-conformist and a born hedonist who loves to make myself laugh. Temple is a serious, academic character who lives for knowledge and learning.

I grew up hearing the word autistic since I was about 10 years old which was in 1973 (a teacher had taken me home overnight after a family fight and had then come to raise the idea with my family who by then had already been told I was psychotic at age 2 and then disturbed and were just coming to terms with recent testing for deafness where they’d finally learned I was meaning deaf).  Anyway, as a result I didn’t know there was a condition called autism, just the adjective of autistic and I knew this word autistic meant ‘withdrawn’ so I figured that as long as I was singing or making myself laugh then I wasn’t autistic.

When I wrote Nobody Nowhere I was desperate attempt to discover what kind of madness I had  (I feared closeness, had my own language, struggled to understand other people’s speech and felt afraid of anyone knowing me).  It was an incredible shock around that time that I discovered the word ‘autism’ in a book which defined it as a condition.  It was a simplistic description by Lorna Wing, the kind of thing you get on flyers from the Autistic Society these days.  And when I later went to learn more all that I could find was stuff by Francis Tustin and Bettleheim.  But that really gave me insight into why the word ‘autistic’ had been so blasphemous to mention to a mother in the 1970s or earlier.  It would essentially have meant you emotionally and psychologically damaged your child.  So other than Tustin and Bettleheim’s accounts of vastly different ‘autistically disturbed’ children there wasn’t the kind of literature we have today.

The wealth of autie-biography we have today wasn’t really around until the mid to late 90s and it was certainly so diverse it would be impossible to identify with all. My receptive language processing disorder effects my ability to read long strings of text (I’m fine with scan reading and with bullet points) so I also never became an avid reader of other people’s works, although I have read shorter accounts in compilations of the works of those who speak via typing, and I have found much on a soul level I can relate to in some of their works, perhaps because so many have been artistic or spiritual people.

Did this collection of works help create ‘autistic presence’ on a cultural level?  Hmm.  Personally I see people as so individual its hard to imagine that. I think many of the autistic authors have become vilified in online forums where there’s a tighter and tighter requirement for one stance, one view, one ‘shared’ reality and in real life people are just way more diverse than that.  I think the culturalist movement is experiencing its own birth pangs.  It’s like the gay movement where at first everyone felt they had to conform to rigid stereotypes or been deemed ‘less gay’ or ‘not really gay’.  And now that’s relaxed.  People don’t expect or accept a 2D stereotype of homosexuality.  And ‘autistic’ is similar.  But at present many cureists and culturalists are still fixated on the 2D stereotypes and will sometimes go to astounding, even harmful lengths to defend the ‘purity’ of those stereotypes.

Donna Williams

http://www.donnawilliams.net