Since autistic activist Judy Singer coined the term ‘neurodiversity’ some twenty years ago, it has facilitated a great enlightenment and a progressive new approach to the experiences and rights of autistic and other neurologically atypical people.
It is now facing a backlash, much of which is reactionary but some of which has been helped by flaws in some presentations of neurodiversity. Here, I examine some of these issues, in my usual blunt style. This article references autism more than other neurodivergent conditions because this is the area in which most of these arguments take place.
I conclude that an effective neurodiversity approach is one that locates neurodiversity in social structures.
The Neurodiversity Approach and its Benefits
The neurodiversity approach has enabled us to supersede a highly pathological and disabling view of autistic and other neurodivergent people into a far more empowering one. In particular, it has facilitated us to:
- identify that humanity is naturally neurologically diverse, that differently-structured brains are not necessarily faulty, and that there are good reasons why these conditions have remained in the human gene pool
- progress from ‘awareness’ to ‘acceptance’, and thus from pity to demands for rights and equality
- focus on how social structures and environments disable people who are neurologically atypical, rather than assuming that all our troubles are caused by our brains, and so to fight for social change in preference to cures
- highlight the positives of various conditions alongside any deficits
- draw on the experiences of movements for the recognition of other diversities, such as sexual diversity or ethnic diversity.
The neurodiversity approach has won wide support, but it has not become the dominant ideology of society. The older, pathological view still dominates our social structures and political decision-making.
Even where public authorities and employers adopt the language of neurodiversity, they usually do not apply it in practice: they still pathologise, discriminate against and mistreat neurodivergent people. Neurodiversity remains a minority, radical approach, and one that offers the hope of a liberatory social transformation.
Obscuring Specific Conditions
‘Neurodiversity’ is an approach which understands that some brains are wired or structured differently from society’s ‘norm’. It is not a diagnosis, or a condition. It is not a substitute for talking and campaigning about ADHD, or autism, or other conditions.
Consider anti-racism. It is hugely important. But if we only ever pursued anti-racism as an overall theme, we would miss the specificities of anti-Muslim bigotry, of antisemitism, of anti-traveller racism, and so on.
Similarly, ‘LGBT+’ is a useful term to bring together everyone who experiences oppression on the basis of sexuality and/or gender identity. But it consists of different initials meaning different things. I am part of the LGBT+ movement, but I am not LGBT+. I am B.
I am autistic, and therefore neurodivergent. Let’s use the overall approach where that is relevant and the specific condition where that is relevant. For example, people with Tourette syndrome have tics. Stating instead that neurodivergent people have tics is unhelpfully non-specific. Let’s not allow our understandable enthusiasm for the neurodiversity approach to crowd out specific conditions and needs.
On the subject of terminology, I am not – and neither is anyone else – ‘neurodiverse’. An individual cannot be neurodiverse: only populations can. ‘Neurodiverse’ describes a population that contains individuals who have different neurologies from each other. An individual is either neurotypical or neuroatypical/neurodivergent. This may sound semantic, but the wide misuse of this terminology, even in ‘official’ documentation, reveals a misunderstanding of what neurodiversity is, locating diversity in the individual’s identity rather than in humanity as a whole.
Disability or Difference?
Our society defines neurodivergent conditions almost entirely negatively. Look at the use of the prefix dis/dys in their official names: dyslexia, autistic spectrum disorder, dyspraxia, attention deficit hyperactivity disorder. A growing body of evidence suggest that dyslexic people are particularly skilled at spatial reasoning, but we still call their brain-wiring ‘dyslexia’ rather than, for example, ‘enhanced spatial reasoning syndrome’.
The neurodiversity approach allows us to understand that different individuals may have different brain structures, that this occurs naturally, that it is not necessarily an impairment, and that deficits may be matched by strengths.
The social model of disability allows us to separate impairment from disability, stressing that the medical condition may be an impairment but that ‘disabilities’ are the barriers that society places in the way of people with impairments. To apply the social model to neurodivergence, we need to tweak the model to acknowledge that some people’s brain structure, while not impaired, is sufficiently different from the ‘norm’ that those people are disabled by society. For example, it may be a difference rather than a fault in your brain that makes you unusually sensitive to artificial light, but when your living, working and other environments all use that artificial light, then the distress caused to your senses disables you, sometimes quite severely.
(On a historical note, laws barring, say, women or Jews from public offices used to be referred to as ‘legal disabilities’, based on a meaning of disability as a barrier that society imposes on a category of people.)
However, some people’s neurodivergence is an impairment. The mainstream, medical-model view sees those people as disabled entirely by their neurological condition and overlooks the significant contribution that social structures and environments make to their negative experiences. But a flat insistence that a neurodivergent condition is never an impairment (or disability, as used in common language rather than in the social-model sense) would be inaccurate. I haven’t come across any neurodiversity activists who actually argue this, as is sometimes alleged, but a bit more acknowledgement of impairment would be welcome.
We can develop a ‘social model of neurodiversity’ that says that people who are neurologically atypical are disabled by society, for some of us entirely by society, for others by society in conjunction with our impairments. It is important not to throw the social model and neurodiversity babies out with the impairment-denying bathwater. It is also important not to throw the impairment baby out with the medical model bathwater. I hope you follow my meaning.
Ignoring the Severely Affected?
Linked to the previous point, one of the main criticisms of the neurodiversity approach is that it excludes neurodivergent people (specifically, autistic people) who are severely disabled. Some critics of neurodiversity complain about the dominance of discussions about autism by more independent and vocal autistic people and the neglect of more dependent autistic people’s needs. I think there is a genuine issue here, although it is unfair to attribute this problem to the neurodiversity approach.
Although some complain about the imbalance of voices between more independent and more dependent autistic people, the reality is that all autistic voices are under-heard in our society. We are talked about more than we talk, and certainly more than we are listened to. There is an urgent need to amplify autistic and other neurodivergent voices, and to facilitate self-organisation in order to do this. We can minimise imbalance within this self-organisation by ensuring maximum accessibility, enabling people to contribute in their preferred format, with whatever support they need.
Many of the most committed activists and advocates for high-needs autistic people that I know are so-called ‘high-functioning’ autistic people who are strong believers in the neurodiversity approach. They have campaigned against cuts in support services, against abuse in institutions, for justice for those mistreated by the system. Many are themselves parents and carers of autistic people with very high needs, including those requiring 24/7 care. So the anti-neurodiversity allegation that neurodiversity activists ignore the people that they call ‘severely autistic’ is unjust.
Moreover, when the term ‘neurodiversity’ was coined, it was intended to encompass people whose neurodivergence was primarily difference rather than impairment. It seems unfair to accuse neurodiversity of failing to include something that it did not intend or claim to include.
However, ideas and terms develop over time and ‘neurodiversity’ is no exception: its scope and usage has broadened. Alongside this, distinctions between different autistic people have been reconsidered and relabelled.
In 2013, the Diagnostic and Statistical Manual’s fifth edition (DSM-5) dissolved Asperger Syndrome under the heading of Autistic Spectrum Disorder. Although there was a case for doing this, it has had an unfortunate consequence. While it helps to identify what all autistic people have in common, it has also obscured our differences. But this change was made by the American Psychiatric Association, not by the neurodiversity movement. The APA’s explanation for the change does not reference neurodiversity. It is more concerned with medical insurance criteria than with a diversity agenda.
Another allegation from the anti-neurodiversity camp is that neurodiversity campaigners indulge in ‘parent-bashing’.
Neurodivergent people have good reason to criticise aspects of parenting. At one end of the scale, there are parents who administer abusive ‘treatments’ to their children (from bleach enemas to exorcism) in a vain attempt to cure them. These are, thankfully, a very small minority.
However, more mainstream parenting styles also warrant criticism. There is a common view that having a neurodivergent child (particularly an autistic child) is a tragedy and that the priority is to fix or normalise them. It is legitimate and progressive to criticise this view and its consequences for neurodivergent people.
It is understandable that autistic adults are angry when they see parents publicly shame their autistic children by, for example, posting videos of meltdowns. It is legitimate that autistic adults who were traumatised as children by (legal and mainstream) ‘therapies’ speak out against them. It would be far better for parents and others to listen to these critiques than to dismiss them as ‘parent-bashing’.
Parents take on these approaches not because they are bad people but because they live in a society which tells them to, and which simultaneously gives parents huge pressure and precious little support. Parenting a child who is often distressed, sometimes violent, difficult to communicate with, excluded by society and highly dependent is hard. It is harder than it needs to be in a society like ours which gives parents very little support or resources and teaches them nothing about neurodiversity.
This situation is rooted in the capitalist structure of society: the economic system in which production is carried out in the public sphere but reproduction (including child-rearing) in the private sphere. It is a society that treats having children as a private indulgence rather than as the reproduction of the species. It is also a system which organises production for profit and considers pretty much everything a legitimate market, so entrepreneurs market products and treatments to parents whether they are helpful or harmful.
We need to tackle this system and its policies rather than vilify parents. We can do this by demanding the regulation of all treatments and the banning of proven abusive ones; a massive expansion of free, child-centred childcare provision; inclusive, well-funded, progressive education; rights rather than charity; and proper support for parents.
Policies for liberation
There has been a co-ordinated opposition from some who are involved in autism issues to one part of the draft Labour Party Autism / Neurodiversity Manifesto – the appendix that critiques behaviourist therapies. I don’t propose to address that issue in this article.
It is notable that there has been no similar opposition to the other policies in the Manifesto. Of course, we would not expect people to agree with them if they do not agree with the politics that underlie them: politics of anti-austerity, of inclusion, of rights, of socialism. But the apparent consensus of support from the political left and from people affected by neurodivergent conditions for the main Manifesto document suggests that our key demands are beneficial to the full range of neurodivergent people.
It includes policies that will benefit people with ADHD, dyspraxia, dyslexia and other conditions as well as autistic people – and policies that will benefit people wherever they are on the spectrum of autism and/or other neurodivergence.
It is based on five key principles, one of which is the neurodiversity approach. It shows that the neurodiversity approach can be both unifying and inclusive.
Towards a materialist neurodiversity
These arguments point to the need to understand neurodiversity in the context of the society in which people live.
People are part of the physical, natural environment. We also help to shape that environment. We both exist in our environment and interact with it – our physical and sensory environment and the people who live in it alongside us.
We form social structures, and unlike other species we do that in a very conscious way. But since the early days of human history, we have done it in a way that divides people into distinct classes with distinct interests, with a ruling minority holding most of the power.
When we look at how employers exclude neurodivergent workers, we are considering a specific social relationship in which ‘employers’ and ‘workers’ are different categories of people with different relationships to production. When we look at parenting of neurodivergent kids, we are considering the way in which parenting is structured as a private activity, as described above. And when we look at disability, we are considering how our physical, sensory and social environment, and features of our own selves in conjunction with that environment, create difficulties for us.
Understanding our experience in these terms is known as a materialist approach.
A materialist understanding of neurodiversity, rather than one based simply on pathology or identity, will enable us to better understand the oppression of neurodivergent people. It will also enable us to imagine and fight for the reorganisation of society that will embrace and support neurodivergent and neurotypical people.