In The Rosie Project (Graeme Simsion, 2012) we are introduced to Don Tillman, a socially inept professor of genetics who appears to have all the pre-requisite impairments for a diagnosis of Asperger syndrome. However, he is not diagnosed during the course of the book, nor following marriage in the follow-up The Rosie Effect (Graeme Simsion, 2014). The possibility of mental illness is mentioned, although “no definitive diagnosis other than depression was ever recorded” (The Rosie Effect). Somewhere, twenty years in Don Tillman’s past, is a largely irrelevant medical file in which the tentative diagnoses of “‘depression, bipolar disorder? OCD?’ and ‘schizophrenia?’” have been suggested, but the best efforts of 1990s psychiatry failed to fit Don Tillman into any simplistic category (The Rosie Project).
He does have difficulties, which are the source of both comedy and pathos throughout the two books, both the central factor in Rosie’s decision to form a relationship with Don and the central factor in the subsequent turbulence in that relationship.
The question arises for me: Would Professor Tillman be happier with a diagnosis and a label for his behavioural eccentricities and his obvious difficulties in identifying emotional states in himself and others? Would his quality of life be better?
His eccentricities are also the cause of (often hilarious – and hilariously realistic) conflict with colleagues, the police, social workers and airline security.
Would a diagnosis and a label for Don Tillman improve the happiness and quality of life of others? Would a first-responder alert card or bracelet identifying autism spectrum disorder reduce the frequency or severity of those conflicts? The answer to this question is undoubtedly ‘yes’, tattooing the foreheads of eccentric individuals would reduce the difficulties experienced by their colleagues, the police and professionals – but perhaps it is those people, the people experiencing the difficulty, who should be diagnosed.
We are made aware of the value of accurate diagnosis throughout the books – thw word ‘diagnosis’ is mentioned 27 times (11 times in The Rosie Project and 16 in The Rosie Effect) – most often used in relation to emotion – “I diagnosed anxiety / happy / nervousness / stunned / frustration / angry”. Inaccurate emotional diagnosis is potentially catastrophic. It is also used in relation to complex mental states: “brain overload / paranoia / panic / confusion”. Diagnosis of these states, and revealing them to others, explains otherwise irrational behaviour, such as a melt-down that could be perceived as an aggressive outburst. Failure to diagnose was also fatal to Don’s sister Michelle, who died from an undiagnosed ectopic pregancy. Lastly, the diagnosis of love helps both Don and Rosie to work through the concept of a permanent relationship involving one person with impaired cognitive empathy – Don concludes that he wants to spend his life with Rosie, even though it is totally irrational.
So, to concentrate specifically on the diagnosis of ASD, the issue of his differences arises very early. Don Tillman “formed a provisional conclusion that most of these were simply variations in human brain function that had been inappropriately medicalised because they did not fit social norms – constructed social norms – that reflected the most common human configurations rather than the full range” (TRP, p8). He does evaluate his own differences – “I lacked friends, sex and a social life, due to being incompatible with other people. My intensity and focus were misinterpreted as mania. And my concern with organisation was labelled as obsessive-compulsive disorder” – in the context of children with Asperger syndrome (p109). He identifies his own degree of empathy as symptomatic of autism, “I was wired differently. One of the characteristics of my wiring was that I had difficulty empathising. This problem has been well documented in others and is, in fact, one of the defining symptoms of the autism spectrum.”, but critically notes that “An inability (or reduced ability) to empathise is not the same as an inability to love.” His behaviours towards and feelings for Rosie defy all logic because “But I was in love with Rosie” (p163). He is frequently misinterpreted, misunderstood and labelled in unhelpful ways. The label or diagnosis that has the greatest impact on his happiness and quality of life is “in love”, which (by extension) means he is capable of love and compatible with his chosen life partner.
When is a diagnosis of ASD of use? The diagnosis of a meltdown helpfully explains “a reaction to irrationality, but the reaction itself was irrational” (TRE, p22), so symptoms are usefully labelled, but not syndromes. When the social worker Lydia identifies autism, she becomes “the bitch from hell who diagnoses autism at twenty paces” (TRE, p213). The evolutionary psycologist Seymour singles out the most important element of the DSM criteria for autism spectrum disorder when he says “So you’re not autistic. That’s a professional opinion. The diagnostic criteria require dysfunction and you’re enjoying a good life. Go on enjoying it and stay away from people who think you’ve got a problem” (TRE, p53). According to the Diagnostic and Statistical Manual of Mental Disorders, criterion D states “Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning” (American Psychiatric Association, 2013, p50). The criterion is whether the individual experiences impairment, not whether other people – colleagues, the police, etc – experience clinically significant impairments in their abilities to interact with an individual.
When diagnosis matters
Diagnosis matters when, as Seymour states, dysfunction interferes with the enjoyment of everyday life. Don Tillman is a happy, successful academic who is not distressed by any functional impairment. Diagnosing and labelling him – or any teen, adult colleague, relationship partner or random stranger – might reduce the distress of people whose intolerance and lack of compassion leads them into conflict with him. Diagnosing and labelling him may also provide access to interventions and coping strategies appropriate to his own individual challenges, although he seems strikingly adept at solving problems, perhaps through unconventional methods, but without significant distress. The diagnostic label therefore seems to provide no meaningful contribution to his quality of life.
If any individual does experience significant distress as a consequence of functional impairment, failing to fit in with age-appropriate peer activities and failing to create or maintain significant relationships that they desire, then diagnosis might lessen that distress. If other people perceive an individual as ‘weird’ and ‘freakish’ (or worse), then a medical label may be far kinder than playground and workplace taunts. The distress of adolescent and adult psychiatric hospital treatment (experienced by 70% of adults with ASD) is almost certainly lessened by an explanation for the symptoms that lead to hospitalization. In all of these cases, where the individual does not have strategies in place sufficient to cope with functional impairment and social intolerance, an accurate diagnosis also leads to the potential to discover appropriate interventions and kinship with others sharing the label.
Diagnosis is irrelevant to an individual who is not experiencing distress, no matter how ‘severe’ their differences from expected normality.