IS AUTISM A DISORDER?
No. 1 IN THE AUTISTIC UK “NEED TO KNOW” SERIES
“In 1978 Lorna Wing and Judy Gould undertook the Camberwell study and a year later published their paper introducing the ‘Triad of Impairments’, the ‘backbone’ of diagnostic criteria for autism. That’s a long time ago. This paper asks, “surely it is time to reconsider our use of terminology that could potentially damage the very population we are supposedly trying to support?” Luke Beardon
Dr Luke Beardon is a practitioner, researcher and trainer and is currently Senior Lecturer in Autism at Sheffield Hallam University. He is co-author of the ASPECT report and has co-edited two books on Asperger Syndrome published by Jessica Kingsley Publications. He is now part of the global consultancy, Autistic Intelligence – http://www.autisticintelligence.org He describes his interests as “anything related to autism and Asperger Syndrome, pretty much to the exclusion of everything else”. We like Luke.
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, the saying what they think as opposed to making things up, the very genuine nature found in so many individuals with autism?
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 NT (neurotypical) people than there are people with autism.
What we should be talking about is difference, not disorder; we should be recognising that just because a person with autism 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 people with autism and their families and friends do not have daily struggles; what I would suggest is rather
than those struggles being placed firmly at the door of the person with autism, we should be looking elsewhere – at the rest of the NT population who, with the right guidance, attitude, willingness and acceptance can change their way of thinking and behaving better to suit those with autism.
Secondly, are we right to say that people with autism are impaired? I would argue not.
Where do the vast majority of problems for people with autism come from?
Other people, usually NTs. 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 NTs are impaired in their understanding of autism, rather than people with autism are inherently impaired – that, certainly to my mind, would be a far more accurate reflection of reality.
For example, to say that an individual with autism 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 NTs illogical and highly disturbing propensity to say things that are not accurate, precise or even true?
Surely we should be decrying the NT population as a bunch of liars who cannot use verbal language accurately, rather than placing the blame firmly on the head of the person with autism.
Rather than insinuating that the problems lie with the individual, look at the problems created by the NT population.
If I cannot 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 everyday problems for the individual and their families.
I am utterly convinced that one of the best ways of supporting an individual with autism is to change behaviour – not of the person with autism 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 individual with
If we actually listened to people with autism 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 an NT perspective, by broadening our minds to see things from the perspective of the individual – then we will realise that it is changes in ourselves and society in general that would be most beneficial to those with autism, rather than always placing an onerous expectation on the individual with autism to change.
People with autism are not disordered (the irony with the term being that so many people with autism are highly ordered in their thinking), nor should we automatically dismiss developmental differences as impairments.
Certainly the neurological complexities can be baffling to the NT – as, equally, the NT world is baffling to the individual with autism.
This does not make either or both populations disordered – simply, different.
In order to support individuals with autism 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 with autism) 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 ourselves, society and our values.
Luke Beardon, 2007.