Lacunae: Interview with Stuart Neilson, on the Lived Experience of Asperger’s Syndrome

Disablement, Portayal, Sensory issues

Last year I was interviewed by Marie Walsh for a special issue of the journal Lacunae, the International Journal for Lacanian Psychoanalysis. Issue 16 of Lacunae had a special theme of autism reflected in Jean-Claude Maleval and Michel Grollier “Mottron’s Happy Autist is Not Kanner’s,” and Rob Weatherill, in “Being (Not) in the World Without a Father” in addition to this interview. (You can read the full table of contents or buy a copy from Karnac Books).

The full text of the interview is reproduced below with permission. Marie Walsh did an excellent job of shepherding my rambling thoughts into a cohesive narrative.

You can cite this interview as: Walsh, Marie. (2018). “Interview with Stuart Neilson, on the Lived Experience of Asperger’s Syndrome”. Lacunae, 16, 54-63.

Interview with Stuart Neilson, on the Lived Experience of Asperger’s Syndrome

Marie Walshe

As part of this themed edition, Lacunae is pleased to include an interview with Dr. Stuart Neilson, an adult subject who has been diagnosed with Asperger’s syndrome. This interview was facilitated by Tom Murphy. He is interviewed by Marie Walshe, on behalf of Lacunae.

Dr. Stuart Neilson is an academic and researcher who has previously worked as an engineer and business consultant. Dr. Neilson lives with his family in Cork, Ireland and in 2013 he co-published a book, Living with Asperger Syndrome and Autism in Ireland, which is his own narrative of living with Asperger’s syndrome and autism. In this book, as in this interview, Dr. Neilson asserts that for him, “anxiety is not understanding other people.” In a comment that echoes the fundamental Lacanian principle that the intrusion complex is the paradigm of social interaction (Lacan, 1938, pp. 23-25), he declares that “all social interaction is a totally unnatural environment.”

“So Many Things Made Sense to Me Then”
Dr. Neilson was diagnosed with Asperger’s syndrome in middle age. As a child and adult, he suffered from severe social anxiety. In his forties, his condition deteriorated, and he developed severe depressive symptoms. It was at this point, at forty-eight years of age, that a psychiatrist suggested to him that his symptoms fit the criteria for a diagnosis of Asperger’s syndrome.
This signifying definition allowed him to self-validate behaviours which had previously simply indicated a failure in social adaptation. In addition, eccentricities such as his sensitivity to touch, to lights, and to ambient noise were made newly comprehensible by this diagnosis. Much of the specific and general anxiety, with which he had lived for decades, was suddenly re-constituted within this act of nomination. He says, “having the diagnosis and identifying this made it more tolerable.”
His reaction to the diagnosis indicated to me, as a psychoanalyst, that his depression was a response to the perceived failure of the Other to respond adequately. It pointed to his desire to be constituted as a subject of the Other. Now that he is a parent with a child diagnosed on the autistic spectrum, he has a new focus for his anxiety. He says, “I worry about the consequences for her mental health, that she might become depressive and anxious.”

“The World Can’t Reach into All Its Corners”
Dr. Neilson has found it “disabling” to have Asperger’s. His experience with doctors and other medical personnel in particular has been made difficult by his sensory sensitivity and his social anxiety. “I got misunderstood every time. The way I behave is odd, ‘psychotic’ and they want to medicate for it.” Unfortunately, the medication he was prescribed affected his ability to concentrate, and to read or research. This is a particular anguish to him because he enjoys reading and negotiates the world so much through knowledge and research. (For him, his enjoyment is derived from a knowledge that is concrete and relates to its objects as real). He appreciates the irony: “I get anxious, I get prescribed drugs for anxiety – which make me anxious.”
He recently had to have surgery and attended hospital frequently for investigations. Having some knowledge about the procedures and protocols made it possible to tolerate his anxiety in these situations. He says, “If I cannot identify sounds I get more anxious. I am very sensitive to skin-touch… especially when unexpected… Nurses explain whereas a doctor would put their hands somewhere without any explanation.”
He remembers vividly an occasion when two security men were summoned by a doctor who had upset him during an examination. “They treated me like a suspect,” he commented, “it was terrifying.” However, he observes that doctors are becoming more aware of these issues in recent years.
“A wheelchair symbol covers everything (but it’s the) wrong symbol for people who are mobile and physically able who have to deal with these kind of experiences (with lights and noises and touch) in public spaces.” He is intrigued as to how the disability posed by an Autistic Spectrum Disorder (ASD) diagnosis might be represented so that the Other could appreciate these difficulties and register their subjectivity other than as deficit.

“The Other is Making Public Spaces Disabling”
According to Dr. Neilson, modern spaces are being designed to alienate those sensitive to light, noise and touch (these are critical diagnosis criteria for Asperger’s). When he discussed this with his students on the Autism Spectrum Studies course at the local university (University College Cork), they contributed examples from their own research. For example, all café baristas now grind their coffee and steam the milk within earshot of their customers. In the local shopping centre, noise recorded in more popular areas is piped into the quieter areas to create a “busier” ambience and attract increased footfall. The consequence of this “fuller sound” for Dr. Neilson is a heightened sibilance and disturbance. He observes, “It is a conscious disabling act (by the Other)… All those noises break up the social encounter.”
He points to new shops, such as Tiger, which force customers to navigate narrow aisles without regard to their sensitivity to touch or claustrophobia. Larger, more established shops, such as Ikea, have a disability guide to direct distressed customers to the nearest exit, or to stand-aside spaces, “for people who don’t want to be in this continuous motion.”

“I Go There for De-Compression”
Being in a space with other people who share the Asperger’s diagnosis brings relief. “They’re just asking the question, “What does your mother/father do?” and not, “What’s your socio-economic status?… The social demand disappears.” There is no sub-text that requires being negotiated.
He has discovered socio-linguistic short-cuts and studied social protocols to better deal with this sub-text. “I can learn that’s what they mean. But each new example must be learnt, using a conscious part of the brain that’s hard work for me but not for them.”
In his own defense, he treats the demand of the Other by framing it within very structured encounters, such as lecturing. “Social convention has bound these others not to make personal comments.” He acknowledges sadly that, “I am at a disadvantage in a social setting.” Working as an engineering and business consultant, he lacked the psychological resilience required to develop a referral network; he emailed his colleagues after meetings to confirm his understanding of the proceedings; he blames his failure to be promoted regularly on this social “handicap.”
Growing up with Asperger’s, he was in a constant state of anxiety, what John Elder Robison (2008) has called a state of “wariness.” He has sought silence and space for reflection to deal with this anxiety. There is a room in his house where he goes to de-compress and escape the unrelenting noise and demands of the Other. “I love going to do the washing-up because it’s in this quiet room!”

“Autism Only Exists in Relation to Other People”
He has observed that language is not only socially contingent, but it also depends upon cultural referents and usage. He has studied ethno-linguists Asifa Majid and Olga Bogdashina in order to make more sense of the difficulties he continues to experience in relation to language and symbolisation. He worries that “maturation” through language means actually being “absorbed by language,” a phrase, I suggest, that is eerily resonant with Lacan’s concept of the psychotic subject as “possessed by language.” He believes that such an absorption would diminish his appreciation of the world, as individuals with autism live in a world in which “all their senses are working all the time” whereas non-Asperger’s subjects “live in the world of symbols alone.” He hesitates to give up this unbounded jouissance.
Sometimes he treats his Asperger’s “invisible disability” by pretending to have a more visible disability: deafness. “It gives me time to process,” he says. Being “hard of hearing” is more comprehensible and socially acceptable than being “tired of hearing,” than being unable to process quickly enough the multiple meanings and different meanings of language within the symbolic register.
After his surgery, he had to carry a stick which became his “symbol.” For a while, this real lack functioned to bridge the gap between registers.
He feels lucky to be working in research. Interactive environments are difficult for one incapable of dealing with all the “rivalries” and the constant “hiding” (sub-text) that underpins social discourse. “Straightforward is ideal to me.” His depression is compounded by frustration with this alienating Other. “I am disabled by someone else’s behaviour and they don’t make allowances.”

“Having a Child Like Me was Good for Me”
His wife complements his social handicap in that she is adept in social and emotional discourses. He remarks wryly that with his daughter’s diagnosis, she now has “two toddlers to manage.” He worried about telling his daughter of her diagnosis: “You can’t help what you feel. You’re not in control. You don’t have a name for it.” As a couple, he and his wife function as “a kind of mirror” to each other. He finds that being able to talk about the condition with her helps him to reflect upon it.
After receiving his own diagnosis, he gained a new perspective on his experience of school as a child. He had been regularly sent to detention for being “cheeky” by teachers unable to tolerate his behaviour. At first, he was placed in remedial education but eventually he was returned to mainstream education as the “difficult kid with an anti-authoritarian streak.” He summarised this period in his life succinctly, “it didn’t teach me anything.”
His anxiety has acquired a new focus since his daughter was born. As a researcher and parent, his daughter confronts him with unanswered, and perhaps unanswerable questions:

  • Is the goal of Applied Behavioural Analysis (ABA) to produce a better child, or adult outcome?
  • Is early intervention really important? Does education make a difference?
  • What do we want for our children? “Happiness has to be in there but productivity, success? How would they be measured?”
  • What kind of people do we want them to be – in care or independent?

As a researcher and a subject with Asperger’s now in his middle age, he regrets that there are no long-term studies to measure the effectiveness of new treatments such as ABA. There is also a dearth of research to date on autism in old age, which he finds personally quite intriguing.
He believes that researchers have not engaged sufficiently with people on the spectrum themselves about these questions and concerns. He considers that subjects with autism and Asperger’s are portrayed within a very narrow range of abilities as opposed to being treated as individuals with very different talents and traits. He regrets stereotypical television characters such as Sheldon in The Big Bang Theory, or movie portrayals such as Raymond in Rain Man. He was appalled to discover that some psychiatrists in the UK were still using Rain Man in a teaching module.
For him, there is an unexplored spectrum between “capacity” and “incapacity.” He wonders what if the extraordinary capacity of Barry’s tea-tasters was actually to be diagnosed as an autistic trait?[1] He has observed anecdotally that anomalies are becoming less tolerated within the contemporary education system. As a teacher and as someone with Asperger’s, the ideal education system would be one inclusive of all its subjects whatever their diagnosis, whether deficit or surplus. He would like to see more investment in discovering each student’s own strengths and working towards developing their individual talents.

[1 A popular advertisement on Irish television for an Irish tea-making company, Barry’s, depicts two people who make and taste the tea and talk about the effect of drinking the tea and what it will unlock in tea-drinkers.]

In discussing Dr. Neilson’s experiences as a teacher and parent, I was reminded of contemporary interventions which address the parent-child relationship as critical to the development of verbal and social skills in children with autism.[2] Research into cognitive interventions with parents that reinforce a parent-child encounter in which both are subject to the gaze, voice and desire of the Other (as therapists and researchers) is producing encouraging results (Zeliadt, 2018). Within these settings, children are discovering a capacity for “pretend play” (symbolisation) and their parents are discovering a capacity for reflection on their child as an autonomous subject (separation).

[2 On the subject of therapeutic interventions with parents such as JASPER (Joint Attention, Symbolic Play, and Engagement Regulation), see “Isolating active ingredients in a parent-mediated social communication intervention for toddlers with autism spectrum disorder” by A. Gulsrud, et al. (2015).]

Psychoanalytic theory (Freud, Lacan, Winnicott and Bion) would interpret that in such programmes these parents find themselves temporarily relieved of the Other’s demand for an “ideal” child and they become subjected instead to the Other’s enigmatic desire (a question). In this way, the questions posed for Dr. Neilson by his relation to his daughter and his diagnosis have introduced a hesitation, a gap in the absolute nature of knowledge. Dr. Neilson’s first book was about working with complex statistical mathematical models. After his diagnosis he wrote a memoir, a personal account of the consequences of his diagnosis. It suggests that this nomination (Asperger’s syndrome) produced a question addressed to himself as Other.

Reference List

Related posts:

  1. New book – Living with Asperger syndrome and autism in Ireland
  2. Asperger syndrome film discussion group
  3. Interview article by Marie Walshe in Lacunae, July 2018
  4. Asocial people are “a piece of the continent” too, by Stuart Neilson