Luke Beardon, 2018 Updated Version (originally available 2007)
This has been updated to reflect up to date preferred terminology only.
Note: by ‘we’ (our, etc.) I am referring to society as a whole (not ‘me’).
In 1978 Lorna Wing and Judy Gould undertook the Camberwell study; following their paper published a year later the so called ‘Triad of Impairments’ was introduced, and has since been the ‘backbone’ of diagnostic criteria for autism (now trimmed down to a dyad – but essentially not a lot has changed). Their work at the time was cutting edge and seminal, influencing the way in which professionals understood the world of autism. Here we are, decades later, and I for one still come across the term ‘impairments’ on almost a daily basis. However, thirty years is a long time, and while Wing and Gould will forever be positively associated with research in the field of autism (and rightly so) surely it is time to reconsider our use of terminology that could potentially damage the very population we are supposedly trying to support?
Firstly, is autism really a disorder? For all of the arguments to say that it is, I would strongly suggest that there are counter arguments against. We are told that people with autism lack a theory of mind, executive functioning, have poor central coherence, have developmental delays in communication and social understanding. In my experience I would not contest that this causes difficulties for the individual and family. But, having said that, what about the counter-side to this: the honesty, the straight talking as opposed to making things up (or lying), the very genuine nature found in so many autistic individuals? What about all of the extraordinary qualities rife within the population, the attention to detail, perfectionism, drive, and focus? I would say that the only reason we use the term disorder is because there are more of the predominant neurotype (PNT) than there are autistics. What we should be talking about is difference, not disorder; we should be recognising that just because an autistic child develops differently it is not automatically a negative state (i.e. ‘disorder’) but a difference that needs acknowledgement. I would not suggest for one minute that autistic children/adults and their families and friends do not have daily struggles; what I would suggest is rather than those struggles being identified as the sole problem stemming from the autistic individual, we should be looking elsewhere – at the rest of the PNT population who, with the right guidance, attitude, willingness, and acceptance can change their way of thinking and behaving better to suit the autistic population.
Secondly, are we right to say that people with autism are impaired? I would argue not. Where do the vast majority of problems for autistic people come from? Other people, usually PNTs. Our lack of understanding autism directly causes huge amounts of anxiety, confusion, stress and distress to people with autism. Perhaps we should be saying that PNTs are impaired in their understanding of autism, rather than autistic folk are inherently impaired – that, certainly to my mind, would be far more accurate a reflection of reality. For example, to say that an autistic individual is impaired in their communication would suggest that the problem lies with that individual, as if something is wrong with them that requires fixing. Now consider the child who complies with what he is told (to the letter) and is subsequently admonished for doing just that. One might say that is a result of literal interpretation of language – part of the so called ‘impairment in communication’. But where is the celebration of honesty for that individual? Where are the cries of anguish over the PNTs illogical and highly disturbing propensity to say things that are not accurate, precise, or even true? Surely we should be decrying the PNT population as a bunch of liars who can not use verbal language accurately, rather than placing the blame firmly on the head of the autistic child. Rather than insinuating that the problems lie with the individual, look at the problems created by the PNT population. If I can not communicate effectively with a non verbal child, who am I to say that the impairment is with the child? Surely I am equally impaired! It is my impairment just as much as any problems associated with autism that causes those every day problems for the individual and their families.
Thirdly, I am utterly convinced that one of the best ways of supporting an autistic individual is to change behaviour – not of the autistic person but the behaviour of those around them. If the world was more organised, better structured, if people actually said what they meant, then surely this would better suit the autistic population? If we actually listened to autistic people and responded accordingly we could go a long way towards meeting need. Perhaps most importantly, if we developed a better understanding – by refusing to see things always through a PNT perspective, by broadening our minds to see things from the perspective of the individual – then we will realise that it is changes in society in general that would be most beneficial to the autistic population, rather than always placing an onerous expectation on the autistic individual to change.
Autistic individuals are not disordered (the irony with the term being that so many autistic people are highly ordered in their thinking), nor should we automatically dismiss developmental differences as impairments. Certainly the neurological complexities can be baffling to the PNT – as, equally, the PNT world may be baffling to the autistic. This does not make either or both populations disordered – simply, different. In order to support individuals we must accept that differences do occur, but at the same time recognise and accept that difference is not synonymous with disorder.
One day, with luck (and a lot of help from those who are autistic) we will see beyond our own, very narrow, view, and celebrate autism, rather than separating the population by negative terms such as disorder and impairment. Until then we should be taking a long hard look at our society, and our values.