Moving Away From a Deficit Model of Autism
I am Autistic. Which, according to the DSM-V (the Diagnostic and Statistical Manual of Mental Disorders) means that I am ‘less than’. The word ‘deficit’ appears five times in the first four sentences of the Autism Diagnostic Criteria. The wording in the ICD-10 (International Classification of Diseases) is of a similar nature. According to these two resources, which contain the criteria against which most of us are diagnosed, to be autistic is to be found lacking. To not measure up to the criteria for being a neurotypical human being.
I am not less than. I am different. I don’t have a ‘failure of normal back and forth conversations’, I communicate differently. I do not have a ‘deficit in social-emotional reciprocity’, I reciprocate differently. When I respond to you telling me about something in your life by recounting an event from my own that mirrors yours- either situationally or emotionally- this is not a failure to engage with what you are saying, this is my way of demonstrating that I empathise with your story and am using an example from my own life and experience to illustrate this- ‘I hear you, and I’m going to show you that by telling you about a similar thing that happened to me’.
We need to move away from this deficit model of autism (and other neurological differences). The language we use to define and describe things is important. What message do these criteria send to those who are diagnosed? To the families of those people? To society as a whole? When I was first wondering if might be autistic, one of the reasons I delayed for so long in seeking a diagnosis, was that I did not recognise myself in these wholly negative descriptions. They are also the reason that shortly after I received my diagnosis I had an existential crisis, doubting my value as a human being, and seeing myself through this distorted and limiting lens.
When I engage in ‘stimming’ (self-stimulatory behaviour), my repetitive motor movements are not ‘restricted’, as described in the DSM-V. They are, in fact, liberating, joyful, calming, demonstrative and essential to my well-being. When I engage my vestibular system by gently rocking back and forth, I am connecting with my body and affirming my position in space and time. When I hold a favourite stone in my hand, turning it over and over, I am interacting with my environment by engaging my senses. I am playing. I am experiencing the weight and texture of the stone. I am enjoying the stone. I am dissolving the boundaries between myself and it. This is visceral- ‘based on deep feeling and emotional reactions rather than on reason or thought’*. Not restricted.
Being autistic is not simply displaying a certain set of behaviours. Being autistic is experiencing the world and the self in such a way that may lead to certain behaviours. My behaviours are the end result and outward manifestation of my internal state, and they are not a deficit. Dr. Devon Price, in his wonderful book ‘Unmasking Autism’, sets out a list of ‘Common, Healthy, Autistic Behaviours’ which includes ‘needing to know what to expect before entering an unfamiliar situation’, ‘taking a long time to think before responding to a complex question’ and ‘not knowing how they feel, or needing a few days to figure out how they feel about something.’ This is the message that we need to be sending- I am not a broken neurotypical person, I am a healthy autistic person.
It's important to be clear here that I am not sugar-coating being autistic. I am not saying that being autistic is all sunbeams and flowers. There are many difficulties that can go along with being autistic. The same sensory sensitivities which mean I can get intense pleasure from feeling the texture of a stone, or losing myself entirely in a piece of music, also mean that I can become easily overwhelmed by external stimuli and need to withdraw. The same facility to experience huge joy and compassion means that I often find it difficult to regulate my emotions, resulting in burn-out or melt-down.
What I am saying is that these difficulties do not need to be pathologized. They are normal, healthy, autistic difficulties.
American Psychiatric Association (2013) Diagnostic and statistical manual of mental disorders: DSM-5. 5th edn. Washington, D.C.: American Psychiatric Publishing
Price, Dr. Devon. (2022) Unmasking Autism London: Monoray
World Health Organization(WHO). 1993. The ICD-10 Classification of Mental and Behavioural Disorders. Genève, Switzerland: World Health Organization.
*https://dictionary.cambridge.org/dictionary/english/visceral