Misperceptions of ASD Neurodiversity and Health Recovery

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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.

“There is currently a tendency to romanticise the autistic state (such as through TV detective dramatisations) 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.”
‘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 This scientifically outdated viewpoint has long-since been disregarded in genuine genetic research, except in about 5% of individuals, where a physical mutation can be seen on the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’.

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.”

Disrupted Development
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.

If I understand correctly, Jennifer Poole (the author of the above-quoted article) advocates treating the specific problems that are causing the most suffering for an individual, but without the goal of trying to make the person "normal." That's what I favor also.

I have big issues with the goal of normality. To me there's a vast difference between the goal of normality and the goal of maximum relief of suffering.

Unfortunately the the autism research establishment still fails to make that distinction, for the most part, with the result that there has been shockingly little research on, for example, the specific neurological reasons why nonverbal autistic people can't talk.

I interpreted the article as Neurodiversity (from her point of view in the literal word sense) is that all brains are unique, just like all personalities are unique. The literal neurodiversity is what gives us our sense of self.

She says Neurodiversity (the self) is better expressed when all negative symptoms of autism are removed.

Since the official diagnosis of autism is made up of only negative symptoms and rarer positive savant like skills exist in some of the NT population, the obvious conclusion - removing all of these negative traits would remove their autism.

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I interpreted the article as Neurodiversity (from her point of view in the literal word sense) is that all brains are unique, just like all personalities are unique. The literal neurodiversity is what gives us our sense of self.

She says Neurodiversity (the self) is better expressed when all negative symptoms of autism are removed.

Does anyone else think there's something a bit "off" in how the writer makes their case?

To quote Alan Gardner, with the implication that some of his experiences of autism are just his personality, and/or could have been improved by treatment? And to quote author Mark Haddon, who is not autistic (or so I believe?). Are they the extent of her case study?

What I mean is, I have no problem with the idea of treatment to help with the more distressing aspects of autism, but to say that many aspects can be effectively treated to "recovery", and implying that they are more personality issue than neurological wiring (as I think she is doing?) is going too far.

I'm not explaining myself well, am I?
Something just seemed "off" to me, it's as if she's trying to undermine the concept of neurodiversity in a roundabout way calculated not to draw our wrath. On the one hand she offers us what we want - help with the more distressing aspects of neurodiversity to achieve health and fulfillment of our potential - but at the same time she is implicitly denying the concept of autism as a condition of neurological diversity.

Sneaky.

As someone who would like my autism cured i understand what shes getting at, although she unfortunatly like Simon Baron-Cohen feels the need to engage in political correctness to appease the advocates by attempting to lie to them about the goal of biological intervention.

The goal is obvious, autism is primarily a brain disorder, its diagnosed by its negative triats not by any positive ones.

Permanently Removing each negative triat reduces the autism diagnostic score by each negative triat removed. Remove them all and the person no longer scores high enough to have autism its as simple as that.

"Neurodiversity" is an invented word that can be used to describe the uniqueness of each brain if used literally or used in an advocacy format.