The end of autism?

We received several letters in response to last month's special issue.

It’s 70 years since Kanner first wrote about ‘autistic disturbances of affective contact’, but as contributors to October’s special issue ‘Autism: Myth and reality’ pointed out, autism is still a puzzle. Several authors mentioned the probable existence of autisms (plural), but still referred to ‘the condition’, ‘having autism’ or to ‘sub-types of autism’ (all singular). The terminology we use by default reinforces an implicit assumption that autistic characteristics must have something in common at the biological as well as the behavioural level. It’s this assumption that in my view is largely responsible for autism remaining an enigma.

‘Autism’ began as Bleuler’s descriptive term for the withdrawn state seen in patients diagnosed with schizophrenia, hence the initial assumption that schizophrenia was involved. Kanner (1943) ruled that out and listed 20 ‘essential common characteristics’ in the 11 children he’d seen. By 1956, 120 children had been diagnosed and Kanner and co-worker Eisenberg were obliged to review their list of commonalities (Eisenberg & Kanner, 1958). They abandoned several and collapsed the rest into five items. By the time Wing and Gould carried out their large-scale study in 1977, the number of common characteristics had been whittled down to three (Wing & Gould, 1979). This trend – the more children diagnosed, the fewer and less specific the diagnostic criteria – rang alarm bells about criterion validity; Kanner himself complained about a ‘pseudo-diagnostic wastebasket’ (Feinstein, 2010).

The term ‘autism’ had shifted from being a behavioural descriptor to being widely construed as indicating a single medical condition, albeit one framed exclusively in behavioural terms. Researchers have tended to focus on commonalities and behaviours and to overlook differences and somatic symptoms. Because the sensory abnormalities, hypermobility, food intolerances and digestive problems often reported as concurrent with autistic behaviours are not common to everybody diagnosed with autism, they’ve been marginalised as ‘comorbidities’ even though they could be indicators of the causes of autistic behaviour. Gillberg and Coleman (1992), for example, noted the association between autistic behaviours and chromosomal abnormalities, metabolic disorders, viral and bacterial diseases, structural malformations, sensory impairments and 20 other medical syndromes. The implication is that autistic behaviours are analogous to, say, respiratory problems; all patients have some symptoms in common but not all respiratory problems have the same causes.

There are likely to be common causes for autistic behaviours within groups. But that doesn’t make them subgroups of autism. It’s possible there’s an underlying common cause for all autistic characteristics. But we don’t know that and shouldn’t assume it, especially if it means marginalising differences and somatic symptoms, and thus overlooking important clues to the causes of autistic behaviours – and health issues in individuals. Perhaps it’s time to start thinking about the end of ‘autism’.

Sue Gerrard
Shropshire

References
Eisenberg, L. & Kanner, L. (1958). Early infantile autism 1943–1955. In C.F. Reed, I.E. Alexander & S.S. Tomkins (Eds.) Psychopathology: A source book. Cambridge, MA: Harvard University Press.
Feinstein, A. (2010). A history of autism. Chichester: Wiley-Blackwell.
Gillberg, C. & Coleman, M. (1992). The biology of the autistic syndromes (2nd edn). London: Mac Keith Press.
Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217–250.
Wing, L. & Gould, J. (1979). Severe impairments of social interaction and associated abnormalities in children: Epidemiology and classification. Journal of Autism and Childhood Schizophrenia, 9, 11–29.

 

In the interesting special issue ‘Autism: Myth and reality’ (October 2014), differing views are offered about whether autism is fundamentally a dimensional condition or a categorical one. Thus, for example, Uta Frith suggests a categorical view by asserting that: ‘people with autism really have a very different mind and different brain’ (p.745). This inevitably invites the questions ‘Different from whom?’ and ‘Different in what way?’. However, one important answer to these questions emerging from this issue is that people with autism have minds and brains which are very different from each other.

In view of the spectacular differences between people with autism, I cannot avoid wondering about the nature of this supposedly distinct condition which those diagnosed are all presumed to share. The answer typically proposed is that these differences can be understood as reflecting different values of some variable along an autistic dimension. Thus it is hoped that some explanation can be offered for the heterogeneity of autism and the fractionable autism triad (Happé & Ronald, 2008). But then what are the dimensions along which individuals are supposed to vary and how many such variables are there? The re-defined DSM-5 criteria for autistic spectrum disorder imply that there is one general dimension of autistic symptomatology, represented by the ‘spectrum’. Simon Baron-Cohen (2008) proposes two key dimensions described as ‘empathising’ and ‘systemising’. By contrast, Francesca Happé in the interview article talks about ‘a multi-dimensional space’ (p.764) encompassing the elements of the autistic triad together with levels of intellectual and language functioning. So it is far from clear how these questions can be resolved.

Despite this increasing emphasis on dimensions of autism, it continues to be viewed as a singular psychological or neurobiological disorder. Thus Happé, apparently reflecting Frith’s view, says that in relation to problems in theory of mind ‘[there] probably is a qualitative difference’ (p.764, italics in original) – this looks very much like a categorical view. So the dominant view is still underpinned by the rarely questioned assumption that autism represents a psychobiological natural kind with its own unique essence waiting to be discovered (Verhoeff, 2012). This recurs in its redefinition in DSM-5 as a ‘spectrum’ disorder, implying that the failure so far to find a unifying explanation shows that autism is an even more complex neurobiological disorder than previously supposed. The notion of an autistic ‘spectrum’ appears to reinforce the conception, within autism research and advocacy communities, that it remains a distinct condition with an elusive ontological and biomedical essence (Verhoeff, 2014).

Given the heterogeneity of autism, evident in its multitudinous causal pathways and in its phenotypes, this elusive essence must presumably exist somewhere between these pathways and their final expression. However, it is hard to see what explanatory work is done by the concept of autism itself. Hence one can reasonably ask whether it can hold together any longer as a coherent diagnostic category.

Dr Richard Hassall CPsychol
Department of Philosophy
University of Sheffield

References
Baron-Cohen, S. (2008). Autism and Asperger syndrome: The facts. Oxford: Oxford University Press.
Happé, F. & Ronald, A. (2008). The fractionable autism triad. Neuropsychology Review, 18, 287–304.
Verhoeff, B. (2012). What is this thing called autism? A critical analysis of the tenacious search for autism’s essence. BioSocieties, 7, 410–432.
Verhoeff, B. (2014). Stabilizing autism: A Fleckian account of the rise of a neurodevelopmental spectrum disorder. Studies in History and Philosophy of Biological and Biomedical Sciences, 46, 65–78.

 

The hidden face of autism

Wading through the many interesting articles in October’s autism issue, I grew frustrated at the lack of discussion concerning autistic females. The image of autism as a predominantly male condition has been littered throughout the media in recent years, giving a biased view of what being autistic looks like and what it means. A more plausible view is that the disorder affects females in identical ways, but the female brain interprets and handles these impairments differently. The implication is that there is a hidden population of females with autism who may never be identified or supported; many are also misdiagnosed and thus incorrectly treated.  

I was 23 when I received my diagnosis of AS. I had been to hell and back to get to this point, and all because I was a girl. I did not like trains; I was not particularly fussed about numbers; I could look people in the eye; I had never hacked into a computer; I did not display any psychotic tendencies; and I had friends. I have received many diagnostic labels throughout my relatively short life, and I have been over-indulged in therapy, much of which has been hilariously bad or damaging. I approach the task of dealing with my emotions with the same rigour as a scientist trying to find specific genetic coding does – intellectually and slightly removed. But emotions are hard to grasp onto. As an autistic person, trying to think about your emotions and work out what you are feeling is like trying to contemplate the size of the universe and its meaning, if not harder. Being a good chameleon, however, diverts away from core problems, and it’s a skill that females on the spectrum are adept at.

After my diagnosis I decided to go on and research what I knew best and what I most wanted to learn more about: females with autism. In doing so I hope I can also help a lot more women like myself, whose stories are all worryingly similar. Only one fifth of girls are diagnosed with their autism before the age of 11, compared with over half of boys (see tinyurl.com/7s9gpby). We know the core impairments they have are identical, but it seems their manifestation and the coping strategies used often differ (Lai et al., 2011). Females also seem more aware of their autistic traits, as do their parents (Holtmann et al., 2007). With more pressure to fit in and be social, females learn to adapt and put on Oscar-worthy performances every day; it is no wonder stress induced mental illnesses are rife in these women. Atwood (2007) describes how such a coping strategy may be a female-specific reaction to being different; in order to achieve superficial social success, these women imitate people deemed as socially competent.

The main aim of my own research is to make identifying girls on the spectrum quicker, offering the support that they need and helping them to achieve their full potential. Teachers, therapists and doctors see isolated problems in girls, and are failing to see the bigger picture. In order to understand autism as a whole, we need to address this historically neglected minority.

Hannah Belcher
PhD student
Anglia Ruskin University
www.aspertypical.com

References
Atwood, T. (2007). The complete guide to Asperger’s syndrome. London: Jessica Kingsley.
Holtmann, M., Bolte, S. & Poustka, F. (2007). Autism spectrum disorders. Developmental Medicine and Child Neurology, 49(5), 361–366.
Lai, M., Lombardo, M.V., Pasco, G. et al. (2011). A behavioural comparison of male and female adults with high functioning autism spectrum conditions. PloS One, 6(6).

 

Lagging behind in autism provision?

I was pleased to read the collection of features on autism in the October issue. As an assistant psychologist with a personal interest in autism spectrum disorders (ASD) I am always interested in progress made towards increasing public awareness of ASD and vanquishing the myths of the diagnosis.

While the thriving autism research of the last 25 years, as cited by Uta Frith, should most definitely be a cause of excitement and pride, I can’t help but wonder whether we are still falling short in clinical contexts. Having worked across various mental health services, I have commonly experienced clinicians’ reluctance, hesitance, caution or outright refusal to comment on or work with aspects of ASD. At times, this has come from clinicians keen to seek the best possible care for their service users. At other times, it has come from clinicians eager to deny the existence of autism and related diagnoses at the time of their training and therefore their responsibility in providing appropriate care for such individuals. Whichever the reason, the outcome is often a referral to psychology.

While I agree that clinical psychologists are well placed to formally assess individuals for ASD, provide psychological intervention, and refer to specialist services if needed, it seems that autism now faces a battle to gain a place in mainstream mental health services. Once diagnosed, simple changes can easily be made by all staff disciplines to better accommodate the needs of an individual with ASD and dramatically improve standards of care, treatment outcomes and patient experience. Although the general public are becoming increasingly au fait with autism through their experiences of individuals with ASD in popular culture, films and novels, perhaps mental health services are lagging behind.

With the Autism Act 2009 now making it obligatory to assess for ASD if there is a suspicion of a diagnosis, I suspect the ‘autism epidemic’ is likely to continue to grow. I encourage all psychological therapists to share their expertise with colleagues so that we are all better able to appropriately support the Raymond Babbitts (Rain Man), Christopher Boones (The Curious Incident…) and Sheldon Coopers (Big Bang Theory) of this world.

Amy Jones
Beckenham, Kent

Nothing about us without us

The recent special edition on autism raises interesting issues with regard to the British Psychological Society’s code of ethics. This states that psychologists should ‘remain abreast of scientific, ethical, and legal innovations germane to their professional activities, with further sensitivity to ongoing developments in the broader social, political and organisational contexts in which they work’.

With these issues in mind, can we presume that the views expressed in the special edition are not the only views to be aired within the ‘broader social, political and organisational contexts’ in which psychologists work? In the USA, 37 States have introduced new laws to ensure that parents have access to applied behaviour analysis (ABA). There is no mention of this remarkable social development. Indeed, there is no mention of ABA anywhere.

Views of ABA in the UK are blinkered by a period in the history of autism treatment around the use of aversives. Interestingly, Lorna Wing (1966) recommended a ‘smack, a loud firm “no” or putting the child out of the room’ (p.272) for children with autism. Schopler et al. (1980) described the use of ‘aversive and painful procedures’ such as meal deprivation (p.121), ‘slaps or spanks on the bottom’ (p.121), and ‘electric shock, unpleasant tasting or smelling substances’ (p.122) as methods that could be used if other methods do not work. For some unknown reason, it has been Lovaas who was much more heavily criticised for using these methods than Wing or Schopler (see tinyurl.com/mdr8h8r).

The aversive consequences to manage behaviour should be viewed in historical perspective. In the UK the ‘cane’ was used to inflict corporal punishment in mainstream education for all children, until it was finally outlawed in 1987! In private schools corporal punishment was not banned until as recently as 1999 in England and Wales, 2000 in Scotland, and 2003 in Northern Ireland. This is by no means a justification for the use of aversives, nor can it be used to justify a blinkered view of general education, but it helps to put into context the allegations that the use of aversives was a feature peculiar to behavioural interventions in the 1960s. Sadly, corporal punishment was generally part of life then. Corporal punishment and the widespread use of aversives are no more advocated in ABA than they are accepted anywhere else in modern-day society (Sidman, 2000).

The focus of ABA is to help facilitate behavioural growth and skill development to enhance the quality of life. Within the UK, misrepresentations of ABA abound and these are replicated in the media and social media (see tinyurl.com/ol7yhpr). For those involved in the disability rights movement, the phrase Nothing about us without us expresses the belief of people with disabilities that they know what is best for them. The words are a rallying call for people who experience powerlessness in their resistance to dealing with disability oppression. But the phrase has taken hold in many other situations where people find themselves to be victims of oppression by people who claim to know better what is best for them. Can we presume that in the interests of BPS ethical guidelines there will be another special edition on autism that gives voice to professionals trained in ABA, and parents in the UK who are banding together to avail of ABA services despite the many obstacles placed in their way (see ABA4All on Facebook)?

Mickey Keenan
University of Ulster

References
Schopler, E., Reichler, R.J. & Lansing, M. (1980). Individualized assessment and treatment for autistic and developmentally disabled children. Vol. 2: Teaching strategies for parents and professionals. Austin, TX: Pro-Ed.
Sidman, M. (2000). Coercion and its fallout. Boston: Authors Cooperative.
Wing, L. (1966). Early childhood autism, clinical, educational and social aspects. Oxford: Pergamon Press.

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