Misperceptions of ASD Neurodiversity and Health Recovery
Introduction – What is ‘Neurodiversity’
Neurodiversity (ND) is the term given to the range of genetically derived differences in individual brain function, and related behavioural traits, regarded as part of normal variation within the human population. Although this definition applies to all of us, the term (ND) is generally now used almost exclusively in the context of autistic spectrum disorders (ASDs), usually in comparison with non-ASD individuals who are termed ‘neurotypical’. It is clearly vital that we all recognise and fulfil our innate diversity.
However, as a Chartered Psychologist, child development researcher and author in the autism/ASD field, I frequently meet misperceptions of neurodiversity in relation to programmes for autism and health recovery. Somehow or other the belief has developed that to offer such help to an individual on the autistic spectrum is to deny their neurodiversity. In this blog I suggest a new way of looking at this subject: one which honours diversity and difference while enabling the physical and mental health needs of an ASD individual to be met.
‘I Wouldn’t Change Him’
Statements such as ‘I wouldn’t change him (or her)’ or ‘If I could take his/her autism away, I wouldn’t’ have become stock answers for some parents when offered the chance to help their child recover from the many problems faced by those with ASD. It is as if accepting help is seen as a betrayal of their autism and, therefore, the individual’s identity. However, this misperception can sometimes lead to unnecessary suffering and also misses the point that a healthy person is much more able to fulfil their ND potential.
Our Genes Are Not Us
The idea that ‘Autism/ASD = ND’ (autism is just neurodiversity) represents what is known as a genetically determined argument: that is, one where our genes are ‘fixed’ for ever in a certain way. This scientifically outdated viewpoint has long-since been disregarded in genuine genetic research, except in about 5% of individuals, where a physical mutation can be seen on the chromosome itself (as in Down’s Syndrome or Fragile X).
Unfortunately, the idea that ‘we are our genes’ is still stuck in popular culture. This is largely due to the media who tend to present science in overly simplistic ways. But we must now come up to date in our thinking about the role of genes, including in autism/ASD, in order to come into line with the new science of epigenetics: the study of how genes are shaped by environmental factors (1). And, as a result, find a new way of understanding the difference between neurodiversity as genetic inheritance, and autism/ASD as a flexible state, with the potential for physical and/or cognitive improvement.
“It is as if accepting help is seen as a betrayal of their autism and, therefore, the individual’s identity. However, this misperception can sometimes lead to unnecessary suffering and also misses the point that a healthy person is much more able to fulfil their ND potential.”
ASD as Neurodiversity
Because of decades of labelling autism/ASD as a brain ‘fault’, ‘flaw’ and/or biological ‘impairment’, it is understandable that autism/ASD is now presented as a form of ‘neurodiversity’ (ND), distinct from non-ASD ‘neurotypical’ individuals.
An example of this viewpoint can be found in the writing of Alan Gardner, a garden designer, married for 26 years with three children. Alan was diagnosed with ASD in 2013 at the age of 55. Considered ‘quirky’ at school, he states that he ‘can’t catch a ball’. He attributes this to his autism, as he believes that ASD individuals ‘can’t balance’. He describes how he walks ‘in straight lines, even in London, because that’s where I want to go’, and says ‘we tend not to be very flexible in anything…we know what we want, how we want it, and we set about doing it.’
Alan goes on to explain that he does not lack empathy (a common and false assumption about ASD individuals) but that he would rather evade emotions as they upset him ‘being ever so slightly shut off.’ When invited to a barbecue one weekend he claimed to have had a ‘complete meltdown’. In contrast, ‘constant scheming and plotting really appeal, as ‘just having constant goals stops me drowning in my own brainwaves’.
Alan adds that he ‘loves bright colours and patterns’ and ‘doesn’t care what people think’. He also suggests ’autism isn’t a condition it is just a different way of seeing the world’ (i.e. ASD = ND). Most importantly, Alan considers that his physical difficulties are ‘governed by the unique ASD mind’ or, in other words, that they are an inevitable, biological aspect of his neurodiversity.
With his particular perceptual ability of being able to see all the details at once in nature, and replicating them in his garden designs, Alan gives autism as an ‘explanation, not a diagnosis or a condition’ (2)
An Alternative Viewpoint
With respect to Alan, from my perspective as a developmental psychologist, this is an ‘explanation’ that requires explaining. For example, I know from my own research that there is no logical connection between special perceptual abilities and poor balance or between these physical difficulties and the feeling of ‘shut-off’ Alan describes. Rather, understanding how we develop as infants and children has led me to the conclusion that what Alan describes represents a combination of his natural talents, a degree of sensory disruption, plus his genetically inherited ‘thinking style’.
Genes certainly do have a part to play in our development. For example, we each have an inherited ‘preference’ for how our brains process incoming sensory information. This ‘thinking style’ will also influence how we best learn. However, the way our brain deals with (processes) the mass of incoming sensory information we receive all of the time can be disrupted for a variety of environmentally-based reasons. This may result in failure to inhibit infant reflexes, or disorganisation of the sensory pathways in the nervous system.
Robyn Steward, like Alan, is on the high functioning end of the spectrum and travels world-wide training teachers and social carers about ASD. She describes her own sensory difficulties this way: ‘It feels as if my thoughts are in a series of cogs moving around in my brain…like someone has been eating toffee’ (3).
Other examples of disrupted sensory development are described by Mark Haddon in his novel: The curious incident of the dog in the night-time (4 ). In ASD this type of developmental delay or disruption is frequently assumed to be part of the inherited nature of the person, and so of their ND.
But this is not a genetically-derived, ‘different way of thinking’. Rather, such states stem from identifiable developmental disruption which can often be remediated with sensory re-integration programmes (5).
“We are all ND in our own way (that is: have a preferred brain wiring and processing style). But this doesn’t mean we have to put up with anxiety, poor sensory integration, poor physical ill-health or frustrating limitations to our self-expression as people.”
What I am suggesting is that, in ASD, disrupted development of the type described above by Alan, Robyn and Mark can and does ‘masquerade’ as neurodiversity.
This difference may be a difficult concept to grasp, especially for those belonging to the ‘genetic determinist’ school of thought. These individuals tend to embrace the ‘ND’ argument without question, advising those with an ASD to ‘accept your essential self’ (6).
Although probably well intentioned, such a suggestion is out-dated, and also risks neglecting the varied physical and emotional problems many ASD individuals experience. To suggest such problems are ‘part of one’s identity’ is the equivalent of stating: ‘You are ASD/ND and so must lump the difficulties and discomfort that come with it’.
In my view many children and parents are suffering unnecessarily as a result of confusion over the difference between ND and ASD. In fact, there is a lot that can be done to help ASD individuals with the type of difficulties described by Alan, Robyn and Mark, without altering ‘who they are’.
The Distress of Autism
There is currently a tendency to romanticise the autistic state (such as through TV detective dramatizations) while forgetting the distress. In fact, in ASD there appears to be a high degree of discomfort from extreme perceptual processing and overwhelm; poor mind/brain integration and/or reduced physical health.
There is also often very high anxiety. In one study, 84% of ASD participants were diagnosed with a discrete, quite separate, anxiety disorder (7). Clearly, such states represent more than just a ‘different kind of thinking’, although there may be that as well. Our inherent ND cannot be changed, but barriers to its full expression can often be removed to enable a degree of developmental and/or health recovery and improvement.
What Does ‘Recovery’ Mean?
In this context (and the only context in which I use the term) recovery means finding help for the physical and/or emotional health problems that an ASD child or adult may experience. If the individual is perfectly happy, and has no problems, then this will not be necessary. But if this is not the case there is a range of available interventions.
Those who suggest that an ASD individual is fine ‘as they are’ don’t always realise what is being offered through recovery programmes. There are many parents and ASD individuals who are happy to share their own experiences, and sites such as Thinking Autism also contain information on these. Taking time to explore the possibilities that exist can be well worth the time invested.
Health Recovery Fulfils Our ND Potential
Reverting to the true definition of neurodiversity, given at the start of this blog, we are all ND in our own way (that is: have a preferred brain wiring and processing style). But this doesn’t mean we have to put up with anxiety, poor sensory integration, poor physical ill-health or frustrating limitations to our self-expression as people.
Many programmes, including those developed through parents’ own experience of their children’s needs, have helped reduce or remove these stumbling blocks to health and happiness (7). Obtaining such help in no way denies the neurodiversity of the individual. On the contrary, if we can all of us remove any barriers to physical and mental health that may be present we are much more likely to be able to strengthen and express our individual differences.
An Ecological Theory of Autism/ASD: A new theory of autism, and its companion volume: Recovery from Autism, both by Jennifer Poole are available from Troubador Publishing, or by emailing: info at nemetonfoundation.org.uk
1) Poole. J. (2017). An ecological theory of autism: Chapter 5. Matador.
2) Gardner, A. (2015). Autism isn’t a condition it’s a different way of seeing the world.
Daily Telegraph, UK.
3) Steward, R. (2012). Living with Asperger syndrome. Independent UK.
4) Haddon, M. (2010). The curious incident of the dog in the nighttime. Random.
5) Poole, J. (2018). Recovery From Autism (2018): A resource handbook drawn from biographical narrative accounts & current research. Matador.
6) Offit, P. (2013). Frontline, Interview.
7) Lathe, R. (2006). Autism, brain and environment. Jessica Kingsley.
We are getting it wrong and ignorance is hurtingA few weeks ago, I read some posts on an autism support group that upset me profoundly. Questions were being asked about how to stop a child with autism from withholding bowel movements. Comments were made about small...
Finding your kindness: Autism and COVID-19 I’m holding my son’s hand as we walk through the parking lot toward the grocery store. People give us looks. He’s 17 and they likely cannot understand why we’re holding hands. We’re used to this but the judgement seems to be...
The social and medical models of disability What could possibly motivate a busy parent like myself, with not enough hours in the day, to take time out to write about the social and medical models of disability? The incentive, a very powerful one, is my son, who has...
The impact of auditory processing issues in autism It is well understood that many on the autism spectrum experience challenges with processing a range of sensory information. This is wonderfully covered in previous Thinking Autism blogs ‘Misperceptions of ASD...
I hope that my journey in vision therapy will serve not only as a roadmap for people with mild autism to find their way out of the labyrinth of disability but as something that can provide clues to help those with more severe autism find their way to a life more fully lived.
Please find below some thoughts from Romulus Campan, an adult with autism and a delegate at our recent conference. I had the pleasure of talking to Rom at the conference. I cannot remember the last time I met someone so open-minded, eager to take in new information in...
When discussing autism—especially on the internet and in the media—there are way too many people who recklessly engage in false dichotomy. It’s a kind of extremism that gets us nowhere…I can say with 100% certainty that while I seek treatments for my child with autism, my acceptance of him is unconditional.
What is wrong with The Labour Party’s “Autism Neurodiversity Manifesto” and autism identity politics?
Recently in the UK, a “Neurodiversity Manifesto” has been shared by the Labour Party. It has five key principles, each of them lacking in nuance, unreflective of the lived experiences, and ignoring research data.