It is worth exploring what neurodiversity means, in the context of autism. Many adult autists that support the neurodiversity paradigm don’t need the concept spelling out, but we here at Spectra.blog, we have many more people that are ‘new’ to the world of autism asking about it, than we do autists who are fully paid up members of the autie club. (Please note, this content represents the author’s opinion. There’s no real wrong or right, as all of us who are involved in autism in any capacity have experienced different exposure to it, eg. from our own ‘autistic’ perspective, or as a parent/carer/family member/educator. Please don’t berate us for expressing an opinion!).
The neurodiversity paradigm, when applied to the discussions around autism, represents the concept that autism is a difference in neurology, as opposed to a disability. The term was first used by Judy Singer, an autistic social scientist, in a publication called The Atlantic, in 1998. People who support the neurodiversity paradigm tend to prefer to use autism spectrum neurology over words like disability and disorder – however the various identifications and descriptions within the overall debate do lead to differences of opinion. (Interestingly, Ms. Singer has recently stated that: ‘Neurodiversity is NOT a synonym for neurological disability, divergence or difference’. She reportedly now prefers the term ‘Neurominorities’ for those with ‘atypical cognition’.)
Autism is, at its core, widely considered to be a difference in processing. The neurodiversity movement believes that while clinical interventions for specific co-existing conditions or issues that cause challenges (like talking therapies for anxiety, speech therapies for language delay, or medications for epilepsy, as examples) are widely advocated, autism itself is not necessarily a disease or disorder. (It is worth remembering however that the UK’s Equality Act and the Children And Families Act both class autism as a disability, as does the National Autistic Society – so anyone going through autism assessment, and issues connected to education or any local authority intervention or support, will likely come across the terms disorder and maybe disability, whether or not they use them within their own vocabulary.)
Let’s consider some of the differences of opinion mentioned above, and why some individuals may have different viewpoints. For example, many individuals who are autistic, with few additional conditions that are debilitating, and with minimal support needs, may not consider themselves to be disabled (or even differently abled), or to have a disorder. They may simply identify as having autism spectrum neurology. Negative issues or traits (relating to socialisation and communication, as examples) are only disabilities in that social context – in a different environment, they may cease to be a difficulty at all. Other individuals, most notably parents of autists, might argue that their son or daughter’s autism is ‘disabling’, and does make the son or daughter feel ‘disordered’. (Some autists themselves also feel this way.) It simply depends on one’s own experiences and exposure to autism.
Some parents of autists may support the medical paradigm (which can be seen as the opposite of the neurodiversity concept), because having a ‘disorder’ diagnosis can mean access to necessary support and services. Gaining an autism diagnosis can be a lengthy process, and sometimes the last thing on one’s mind at this stage is vocabulary, and the distinctions of being neurodiverse or differently abled.
There is also the question hinted at above, of what makes one disabled – to what extent is it a social issue, in terms of access and infrastructure, as well as awareness? E.g. Is it a condition that disables you, or the lack of infrastructure and support in the community? If you go ‘into’ any social media support group consisting of autistic individuals and their families (and perhaps also to ‘real life’ social support groups; although these probably evoke more polite responses!), you will find a myriad of opinions on this subject. Often, when discussing the neurodiversity paradigm, people assume there is a wrong and a right, or a true and false, based on their own experiences of autism, when in fact we are all allowed an opinion on what autism is, and what it means to us. To reiterate, it simply depends on one’s own experiences and exposure to autism. Some people also question what neurologies neurodiversity should include. For true diversity, surely all neurologies should be included, just as in the case of ethnic diversity, where all ethnicities are included? However, if the online autism community is to be believed, some people seemingly want neurodiversity to be a select group; for example, to include autism and ADHD, but perhaps not dyslexia or dyspraxia. This author advocates that for true diversity, all neurologies should be included within the banner or umbrella
Continuing the discussion over the use of the word disability versus the neurodiversity paradigm, there is also the issue of co-existing conditions to consider, in terms of whether it is these conditions that make one ‘disordered’ or disabled (or differently abled). After all, autism is at its core a processing difference; but would the addition of a further condition make one ‘disabled’ or ‘dis-ordered’? Of course, it depends on the individual.
It is also worth adding that neurodiversity advocates are firmly against any behavioural ‘therapies’ and interventions such as ABA, that are coercive in any way, and seek to make autists appear more neurotypical, or NT. (This aversion does not include conventional, respected therapies such as talking, play, speech and language and occupational therapies.) The behavioural therapies targeted at autistic individuals, that alarm neurodiversity advocates so, essentially seek to break down what the ‘therapist’ sees as either desirable or undesirable behaviours into repetitive steps, rewarding the autistic child for actions the ‘therapist’ deems appropriate. Some parents of autists may claim (while their offspring are still children) that the behavioural training they arranged for their autistic child has helped, or seen benefits; but this author remains to be convinced by a single autistic adult who has endured behavioural training that such ‘therapies’ are in fact beneficial, rather than a system that’s akin to teaching dogs obedience skills, or not to bark excessively.
Moving back to the medical versus social paradigm – here’s an example of the medical paradigm in action. To compete as an autistic athlete under Para-athletic guidelines, one is considered to have an ‘intellectual disability’, as per guidelines in the International Paralympic Committee (IPC) Athletics Classification Handbook – see: www.paralympic.org/ipc-handbook . (However, the definition here does talk about functioning and adaptive behaviour; conceptual wording that neurodiversity advocates surely can’t argue with). Intellectual disability is defined by the IPC as: ‘A limitation in intellectual functioning and adaptive behaviour as expressed in conceptual, social and practical adaptive skills, which originates before the age of 18’. (As in the case of British autistic swimmer Jessica-Jane Applegate MBE, classified as S14, e.g. a swimmer with an intellectual impairment).
However, as we have discussed elsewhere on the site, autism as a neurology does not necessarily equate to intellectual disability. Only around half of autists are thought to have intellectual disabilities as well. One can see how problematic such semantics are for the international Paralympic committee, however! By virtue of the whole concept of the Paralympic movement (developed seventy years ago), people with ‘physical, visual and intellectual disabilities’ – are considered eligible to compete against one another in their chosen sport. E.g. the para-athletic system is based on a medical disability model. Presumably if you are an autistic para-athlete labelled as having an intellectual disability, even if you don’t consider yourself intellectually disabled, you accept the ‘label’ in order to compete in your sport, and focus more on the ‘softer’ description of having limitations in intellectual functioning and adaptive behaviour.
Perhaps some of the issues concerning whether to embrace the neurodiversity paradigm or not stem from all autism profiles being grouped together. When there were more functioning labels in use, it was perhaps easier for individuals to find their clan. Now that we (autists) are all in the same clan, trying to find common ground with other autists and their family members can be problematic, as the spectrum (and our individual experiences of autism) vary so much.
The author’s view
While I do massively support the neurodiversity paradigm, equally, the words disability and disorder don’t offend me as an autist and a parent of a neurodiverse child, if someone else uses them without malice. It is down to each individual, and their experiences shape their language. I don’t actively consider myself to have a disability, but I can see why the National Autistic Society refers to autism as a disability as part of a social, political and legal model. I don’t mind the abbreviation ASD (with D for disorder), but I understand that many followers of my articles prefer ASC (e.g. C for condition), or even more preferably, ASN (e.g. N for neurology).
However, I do think there is a good argument for sometimes including ASD and ASC as terms online. This is because with schools and clinicians using the terms, and the clinical studies that underpin a degree of our understanding of autism using medical terms like D for disability, providers of information need to make it easy to find online. If you are someone starting on your autism journey (as an individual, family member or professional), you want access to facts and information.
I wish there was less division within the autism community, especially between the parents of autists (who sometimes use terms like ‘Autism Mom / Mum’, which really riles autists!), and the autistics themselves. Furthermore, the idea of making neurodiversity a select club that only people of certain neurologies are eligible for is galling. And I often get challenged on the language I use in writing (e.g. mentioning ‘disorder’) because an individual has a different opinion to me. But we are all entitled to our own opinions.
A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism. The information we post here is based purely on our own exposure and experiences. We’d also love your feedback on our posts!
Also published on Medium.