Neurodiversity: What Does It Really Mean?
This post is long and yet I feel I’ve barely scratched the surface. I keep having to remind myself that I am writing a blog post, not an academic essay, so I’m afraid I will fall short of comprehensively covering all the issues! But I care about them, because I care about the future of autistic people, their loved ones, and those who help care for them. I am not an expert, just an autistic person who has learnt a bit about neurodiversity and observed dynamics within the community for several years. I’m writing it how I see it, at this moment in time.
What is neurodiversity?
Neurodiversity has become a more widely used term in recent years, but it was originally coined in 1998 by Judy Singer, a neurodivergent sociologist, to describe the idea that what we currently call “developmental disorders” (eg: autism, ADHD, dyslexia) are actually natural variations of the human brain. Calling them developmental disorders is inherently pathologising as the focus is on our deficits, whereas the term neurodiversity allows us to take a more neutral look at our differences as well as consider our strengths.
Singer thinks of neurodiversity as a subset of biodiversity: a human expression of the variety needed for our natural world, including the human species, to thrive. On her website neurodiversity2.blogspot.com she says that neurodiversity is a simple fact: everyone’s brain is different, but that the use of the term is political. The neurodiversity movement is about improving the way neurominoroties or neurodivergent people are treated by society.
The concept of neurodiversity arises from the social model of disability rather than the medical model. Through the lens of the social model, neurodivergent people are disabled by society and the lack of support we currently receive living in these societal structures, as opposed to there being something inherently “wrong” with a neurodivergent person that means they themselves need to be changed or fixed. In contrast, the medical model places responsibility for difficulties on the individual rather than focusing on how society can be accomodating of neurodivergence.
What are the benefits of the neurodiversity model?
(The focus of this post will be on autism, although autism is just one of many different conditions or neurotypes which could fall under the umbrella of “neurodivergent”.)
There has long been a narrative of autism as a “tragedy” or “unnatural”. While there may be some autistics who feel that way about themselves, most of those narratives have come from parents and carers of autistic people and professionals studying autism from a clinical point of view. While all disabilities tend to be treated by society as a tragedy, autism has been talked about in this way with particular fervour. The concept of neurodiversity has allowed a change of perspective and has provided many autistic people some much needed relief, even if only internally.
It is so rarely considered that autistic people have strengths that might be admirable or useful and even less so that our lives are worthy whether or not we have strengths that others deem worthwhile. Neurodiversity might enable people to break free from the ideas of being less than that have been forced upon them and allow them to embrace the truth of who they are, as a whole human being. It might allow us all to expand our view of humanity. If we embrace neurodiversity as part of biodiversity, what benefits might that bring all of us? For the individual and for the world?
Concerns, criticisms, and counterarguments
Romanticising Autism
Many, although not all, of the most vocal concerns and criticisms of the neurodiversity movement have come from parents of autistic children, especially the parents of those who have high support needs. Some feel that the term neurodiversity downplays the struggles that autistic people have and there have been claims that neurodiversity “romanticises autism”. I understand the concerns of parents who are struggling with supporting their autistic or otherwise neurodivergent child(ren). There is not enough support for autistics, and certainly not enough good quality support, which of course means that those who care for autistic children or adults are often stretched too thin and have few helpful resources. In those circumstances, it is little wonder that the neurodiversity movement may appear unhelpful or even threatening.
I do not believe that any advocates of neurodiversity would wish for autistic people and their families to have no support. In the reframing of autism from developmental disorder to neurodivergence, I do not want our disability erased. But I do know that many of us want the accommodations and assistance we receive for our disability to be focused on helping us live the best lives we can as autistic people, rather than trying to make us less autistic. In essence, we want more help stemming from the social model of disability, and less stemming from the medical model.
Many autistic adults have gone on a journey from feeling shame about who they are to embracing their true selves. ABA (Applied Behavioural Analysis) therapy is the go-to therapy for autistic children in the USA and is becoming more common in the UK. In essence, the goal of ABA is to make autistic children more neurotypical and adults who underwent ABA as children often report that its practises are abusive. Given that ABA was developed alongside gay and trans “conversion therapy” it is not surprising that this practice is often traumatising.
Well-meaning parents may put their children in ABA having been advised to do so by professionals who are still touting its “success” and meanwhile the voices of autistic people who have been harmed by it are lost to the wind. It can be extremely distressing for autistic people to feel that every day more autistic children are being harmed and this anxiety and panic are sometimes projected onto individual parents. Unfortunately, this might make it hard for parents to hear what autistic adults are trying to say. There is a chasm between the advice and treatment from “professionals” and what autistic people actually want. This chasm, because of the power dynamics, can only be bridged by professionals taking the time to listen to autistic people and making sure our experiences and opinions direct the course of their work.
Support needs and severe/mild autism
Some people say that the neurodiversity movement doesn’t represent them and their autistic loved ones because it excludes autistic people who have higher and more complex support needs. It is true that a lot of voices in the neurodiversity movement are people who may have fewer support needs (or appear to), who are able to speak, who may mask their autism, and who can engage in a discourse around neurodiversity. This means representation is unbalanced and that is something that concerns me, too. I certainly don’t wish for any autistics to be excluded from the discussion or for their experiences to be discounted. It is difficult to know how to best represent the voices of those who cannot engage in the discourse for themselves and this is often where autistic adults and parents of autistic children will butt heads. I believe that the vast majority of all involved are trying to help, but that often gets overshadowed by conflict.
Another issue that is raised here is that there tends to be an assumption that because many vocal advocates of neurodiversity appear to have fewer support needs, those advocates don’t struggle, don’t need more help than they’re getting, and don’t have times of high support needs. None of these are true. A very high proportion of autistic people have serious struggles with mental health and you cannot ascertain someone’s support needs by interacting with them, briefly, online.
While many neurodiversity advocates dislike the terms “high/low functioning” or “severely autistic” this doesn’t mean that we don’t see the differences that are being described by these terms. But, much like with the idea of neurodiversity as a whole, we want to reframe them. Calling someone “low functioning” or “severely autistic” doesn’t tell you much about them or their needs. It tends to be used as a short-hand for things like “is nonspeaking”, “needs 24 hour care” or “needs help with daily tasks”. So it’s less specific, and it’s the kind of language that may encourage seeing that person as other, lesser, sub-human. We may be less likely to encourage them to explore and try new things, less likely to try and find ways to communicate with them, less likely to promote their development. There are equivalent problems with calling others “high functioning” or “mildy autistic”. My main qualm is: mild for whom? These terms tend to mean “seems neurotypical” or “can pretend to be normal”. It doesn’t speak to the difficulties that person is experiencing internally, how confused or distressed they are, how much effort they are putting into being accepted. If you really get to know the person, you may find that while they seem to be “independent”, they actually cannot drive due to panic attacks, have depression due to feeling isolated and alone, and struggle to take care of themselves.
One of the reasons some of us are keen to do away with functioning labels is because it puts people into boxes which maintain the status quo. If we – individuals and society - don’t expect a “low functioning” autistic person to have any opinions on neurodiversity or how they are represented as an autistic person, then much of the time we won’t even bother to ask, which continues the exclusionary cycle. Instead, if we use more specific terms such as “nonspeaking”, it can help to open people’s minds and open up more possibilities: perhaps someone who is nonspeaking has many opinions and they haven’t been given the tools to communicate them. I can see how neurodiversity may seem exclusionary but I also see how adopting a mindset of neurodiversity could improve access and quality of life.
Anti-scientific research
There are criticisms that centre around proponents of neurodiversity being anti-scientific research. While this is an over-generalisation, there is indeed mistrust among many autistics towards the scientific and medical communities. This is not without cause. Sadly, there is still a lot of abuse, including institutional abuse, directed at autistic people. We have been, and continue to be, forcibly restrained, punished, and treated as something to be erased. A “cure” for autism is often talked about, but as autism is not an illness, how could there be a cure? We know that because of institutional hostility, scientific research into the causes of autism would likely be channelled into efforts to eradicate autism, and therefore autistic people. It is not that we are anti-science or anti-research, rather it is our experiences and the experiences of the generations before us that make us wary of how research may be used against us.
Bullying
There have been accusations from parents of “severely” autistic children that autistic adults have been bulling them. In all communities, there will unfortunately be some who bully or harass others. This is never okay. I believe that in most circles people who engage in these behaviours will be a minority, so we should all be mindful not to project the actions of a few onto the many, which could be said for both autistic people and parents of autistic children. When I do see autistic people being harsh and critical towards parents, I know that it is highly likely that that person is traumatised, has been shamed for being themselves, has been bullied, discriminated against, and may have suffered unintentional trauma at the hands of their own parents, teachers, and carers. Society is not taught to be kind towards autistic people: our behaviours are seen as odd or even frightening or threatening, and not a lot is known about autism or how to help autistic people. It’s hardly a surprise that simply existing as an autistic person can be traumatising. That, I believe, is the main reason for the mistrust towards non-autistic parents and professionals. This does not excuse any bullying or harassing behaviour. But there is also some grey area in which an autistic person may be communicating their frustration directly, and the recipient of this communication feels attacked. In an ideal world both parties in this scenario would have the compassion (for both self and other) to handle this kind of interaction with grace and kindness, but usually these encounters occur over social media, which is not a platform that seems to engender much empathy or nuance.
Why the animosity?
From where I stand, I see a group of people - autistics and parents of autistics - who want the best for autistic people but lack support and are often forced into a kind of survival mode. The lack of good quality information and support means that life can be difficult to manage. Autism is already demonised and leaving autistics and parents without adequate support creates conditions which bolster this idea that autism is to be feared and despised. The neurodiversity movement, then, may have felt like a breath of fresh air for people who didn’t want their autistic selves or loved ones to be demonised. In a world that rejects us, neurodiversity may feel like acceptance. Possibly for the first time in our lives. A sigh of relief that says “I’m not wrong or flawed or faulty, I’m just autistic.” There may be subsequent discussion of our strengths and what we enjoy about being autistic or neurodivergent, and joy as we find others similar to us for the first time. But, perhaps this looks foreign to a scared parent with a child who has poorly understood, complex needs and not enough effective support. And so the pendulum swings back again towards highlighting the struggles they and their child face, and so it goes, back and forth, further alienating one other with each swing of the pendulum.
What do I think about neurodiversity?
By and large, I like the term and I like the concept. To me, claiming that the neurodiversity movement “romanticises autism” makes me shudder: it brings to mind people who claim that happy, fat people are “glorifying obesity” or that gay and trans people going about their lives are “pushing an agenda”. These phrases reek of bigoted outrage that someone autistic, or fat, or LGBTQ+ (or indeed all three), could possibly like themselves and not want to change. It was not long ago that “homosexuality” was in the DSM as a “sociopathic personality disturbance” and I would hope most people these days disagree with that, although homophobia certainly hasn’t been done away with. Let’s not even get started on fatphobia. (I have a whole series of Instagram highlights called Fat 101, 102, 103 if you want to get into it!)
I understand why some do not like the concept and I have my own concerns around entirely squeezing out the medical model of disability (whether or not that was Judy Singer’s aim). Each autistic person will experience their neurology differently and will have different ideas about how we should talk about autism, whether they identify as disabled, and how much of their disability is a result of society’s lack of accommodation. Personally, I do not have my mind entirely made up. I think there may be enough frequently co-morbid health conditions, unwanted sensory overload, and distressing but unavoidable, unexpected change, for example, to feel that one’s own self is disabling, as well as being disabled by society. But I’m also not sure how many fans of the neurodiversity movement would disagree with that. I would imagine that when it comes down to it, most autistic people would say it’s a combination, but that perhaps we feel the need to push the social model harder because it’s the medical model that’s currently running the show. Added to which, the “medical” model doesn’t sound entirely appropriate when discussing these issues, given that autism is not a medical condition. We’re trying to discuss a complex, sensitive issue using frameworks that can be blunt and polarising.
At the end of the day, I can only speak for myself. And my view is that autism is a neurotype, part of the vast tapestry of neurodiversity, but that it can also be a disability. I see myself as both neurodivergent and disabled. My wish is for more support for autistic people and their loved ones and, crucially, support that doesn’t try to force a square peg into a round hole, so to speak. A lot of mainstream “help” tends to be to forcibly change the autistic person to be, or appear, more neurotypical. That is not support.
I wish for support that is holistic, that is not pathologising, that takes time to get to know the individual and work out what kind of help suits them best. To remove barriers to diagnosis and to offer support to all autistics, no matter their level of need. Not to assume that conventional measures of high intelligence and being able to speak mean that one autistic person needs no help, and not to assume that a non-speaking autistic who has a learning disability is incompetent, cannot communicate, or doesn’t deserve to have access to things that society has made inaccessible. For support to be offered to neurodivergent children, parents of neurodivergent children, and to neurodivergent adults, and for there to be healing between autistic people and parents of autistic kids.
These may seem like lofty goals in a time when society is so unsympathetic towards autistic people and when hostilities within our community are high. But I believe that there will be no change without imagination: how can we create a better future without first imagining it?
