An Anthropologist On Mars: Will We Ever Reach A Consensus On Autism?
Autism has had a troubled history. From its birth in the 1940’s, to its present form, and proposed changes, its conceptualisation and diagnosis remains a controversial issue. With DSM-V set to kick in this year, comes a new set of diagnostic guidelines, and rising concerns that mild forms of the disorder may no longer be recognised. Here I discuss a brief historical overview of autism, and what the proposed changes to DSM-V may mean for people ‘on the spectrum’.
“Life on Mars” and Beyond: What is Autism?
Autism is a neurodevelopmental disorder, characterised by a ‘triad of impairments’ in social interaction, communication, and repetitive or restricted behaviours and interests. Temple Grandin, a noted academic and autism activist, famously described her inability to understand the social world as leaving her feeling “like an anthropologist on Mars”. Impairments in communication have been identified at the level of basic language acquisition, up-to the sophisticated linguistic level of intention understanding and sarcasm. People with autism may take things literally, sometimes causing huge misunderstanding. For instance, the expression “You’re pulling my leg”, “Have you changed your mind?” or “It caught my eye” might cause confusion, and even concern to someone who has difficulty interpreting non-literal language! Restricted behaviors and interests may include included repetitive movements (known as stereotypy), compulsive behaviours, a resistance to change, or ritualistic behaviors. Other aspects, such as atypical eating, or sensory sensitivity are also common but are not essential criteria for a diagnosis.
From Greek Beginnings to London: a Brief History of Autism
In 1943 child psychiatrist Leo Kanner was the first to clearly define autism. He recognised 11 children in his clinic in Baltimore who showed virtually no interest in other people or the outside world. He described this profile as ‘autistic aloneness’, borrowing the term ‘autism’ from the Swiss psychiatrist Eugene Bleuler who had used it to describe the inward, self-absorbed aspects of adults with schizophrenia – the term comes from the Greek word ‘autos’ that means ‘self’. Kanner did not however consider autism an infantile form of schizophrenia, recognising that the clinical symptoms were distinct and present from birth.
In Chicago in the 1960’s Bruno Bettelheim portrayed children with autism as living in a ‘glass bubble’. He controversially viewed autism as a severe reaction to an unaffectionate maternal relationship, leading to a drastic form of treatment called ‘parentectomy’ – the removal of the child from his or her parents. This was done in the hope that the child’s development would improve once removed from the supposedly hostile and uncaring home environment, but no evidence was found to support this, and his theory fell into disrepute. However, sadly this view stuck for sometime.
In the period between the 1940’s and late 1980’s autism was conceptualised as a rare and categorically distinct, where people with autism were set apart from the rest of the population. Lorna Wing, a psychiatrist based in London, and mother of a child with autism, was a founding member of the ‘National Autistic Society’. In the 1980’s she suggested that the prevailing view of autism as a rare categorical disorder was out-dated. Her research indicated that autism was a spectrum, and far more common than previous estimates had indicated.
The Current State of Affairs: Are We All On A Spectrum?
In recent years Wing’s view of autism has been widely taken up, and developed further by academics and clinicians such as Uta Frith and Christopher Gillberg. Autism it now considered a spectrum condition, meaning that while all people with autism share certain difficulties, the severity of the condition and how it affects an individual varies largely. This range is enormous, branching the gulf between non-verbal individuals who may have accompanying learning disabilities and require a lifetime of professional support, to extremely high-functioning individuals who are actively recruited in the technology industry for their specialist skills.
From a diagnostic point of view, clinicians have become more sensitive to the many faces of autism, able to identify core deficits in social and communication skills, in the absence of more global disability. And, with this broadening of the autistic spectrum, different sub-types have emerged. At the milder end of the spectrum we have Asperger Syndrome (AS). In 1944 Han Asperger, an Austrian pediatrician published a definition of ‘autistic psychopathy’. He was working in isolation of Kanner, and it is unclear if they were even aware of each other’s work. Asperger identified four boys with a pattern of behaviour and abilities that included a lack of empathy, reduced ability to form friendships, one-sided conversations, and intense absorption in a special interest. Asperger described these children as “little professors” because of their ability to talk about their favorite subject at length and in great detail. Asperger’s work was written in German, and he died before his identification of this pattern of behavior became widely recognised. In the early 1990’s AS gained some interest following Wing and Frith’s research on a recent translation, which lead to the inclusion of the condition to DSM-IV (Diagnostic and Statistical Manual of Mental Disorders, Fourth Revision – more about this later!) in 1994, exactly half a century after the original research. Despite this resurgence of interest, AS remained a controversial and contentious diagnosis due to its unclear relationship to the autistic spectrum.
The label AS is currently given to people who are of average, or above average intelligence, who fit other autistic criteria, but do not display difficulties in language. Individuals who fit this brief, but have a concurrent history of language delay and/ or impairment are labeled with high-functioning autism (HFA). A huge amount of research has been conducted to examine the relationship between AS and the autistic spectrum, and the differences between AS and HFA. To summarise this vast literature briefly, both people with HFA and AS are affected by the ‘triad of impairments’, common to all people with autism. Both groups are likely to be of average or above average intelligence. However, there may be features such as age of onset, language impairment and motor skill deficits, which differentiate the two conditions. Beyond childhood, however, HFA and AS are thought to be relatively indistinguishable.
The view of an autistic spectrum has been expanded even further in the last decade or so. Simon Baron-Cohen developed a questionnaire (The Autism Quotient) to measure autistic traits for the purposes of screening those with AS or HFA. Research using such measures has recently suggested that the traits may be normally distributed in the population, and that those with an autistic spectrum condition diagnosis sit at the tail end.
Re-defining Autism: DSM-V
The debate as to whether we need two diagnostic terms for AS and HFA has been raging. Researchers have been trying to establish whether there is indeed a continuous spectrum of autistic traits, where the clinical cut-off should be, and how we should conceptualise these different labels. DSM-V is due in May of this year and as a culmination of a 14 year review process BIG changes are once again planned for how we view and diagnosis autism.
But what is DSM, and what do the changes mean? DSM is a publication of the American Psychiatric Association, which provides a common language and standard criteria for the classification of all mental disorders. The DSM is used in the US, and to some extent and various degrees around the world. It is used by clinicians and researchers, and relied upon by psychiatric drug regulation agencies, health insurance companies, pharmaceutical companies and policy makers. So, it has a huge influence on many aspects of how those with mental disorders are classified and interact with the world.
In DSM-V (the 5th edition of the manual, due out in May of this year) separate diagnostic labels of autism or classic autism, HFA and AS will be replaced by one umbrella term “Autism Spectrum Disorder” (ASD). This spectrum will include a variety of clinical identifiers and associated features, which will be used to indicate severity in each domain and describe an individual’s clinical presentation. The DSM-V revision website states that the umbrella term of ASD has been proposed in order to address issues with diagnostic reliability and overlap between the subtypes. It appears that under the current system inter-rater reliability was poor (i.e. different clinicians diagnose the same person with different disorders), and that even intra-reliability was a problem (i.e. the same clinician diagnoses the same symptom profile differently across time). Furthermore, there is a lack of evidence supporting differential outcomes or difficulties for those with different sub-types, suggesting that autism is defined by a common set of behaviours and should be characterised by a single name according to severity.
Revisions to the specific criteria required to receive a diagnosis of ASD have also been made. Firstly, the new criteria are more thorough and strict compared. Secondly, at the social interaction and communication domains of impairment will be combined into one, titled “Social/Communication Deficits.” Finally, the requirement of a delay in language development is no longer necessary for a diagnosis.
The revisions to DSM-V are proposed in hope of making the diagnosis of ASD more specific, reliable, and valid. Whilst these revisions are based on research, analysis, and expert opinion, various high-profile people have spoken out highlighting potential pitfalls. It is the removal of AS which has sparked the most attention. Individuals, who currently hold this diagnosis, may need re-evaluation or further treatment and condition management. At this stage, they will probably receive a different diagnosis, which has the potential to be very confusing, especially for individuals’ who identify strongly with their diagnosis. Furthermore, with the tightening up of specific criteria there are legitimate concerns that people who are currently diagnosed with one of the higher-functioning (HFA/AS) subtypes will no longer meet the more strict diagnostic criteria, and may experience difficulties qualifying for and accessing services. There is a lot of anxiety and uncertainty surrounding how policy makers and insurance companies will interpret these revisions, and how state funding and educational services will adopt the changes.
In recent times autism has come to represent many things, and is even considered a positive asset in some areas of life. With the advent of Baron-Cohen’s Autism Quotient, remarking ‘we are all a bit autistic’ has even become very on-trend. Returning to the history of autism briefly… Back in the 1940’s Hans Asperger, noticed that many of the children he identified as autistic used their special talents in adulthood and went on to have successful careers. Indeed, one of them became a Professor of Astronomy and another won a Nobel prize in Literature. A modern equivalent of this is the German company ‘Auticon’ who recognise the specialist talents of many people with AS despite their limitations. They employ people with AS as software testers and offer their services to companies.
What is clear is that these changes will have a big impact on people with ASD and their families. It remains to be seen how clinicians will use the diagnostic criteria, and whether the revisions will lead to improvements in our understanding of and provision for ASD or not. I think there is a conflict between recognising the talents and strengths of those on the spectrum, through programs such as that of Auticon, and not dismissing the specific but pervasive challenges that being a high-functioning person with autistic symptoms (whatever the label!) poses. Re-writing the definition of autism again may, or may not be the answer, only time will tell. But, I don’t think the story ends here…