As an occupational therapist of almost 30 years, I have watched many aspects of my profession (and of healthcare in general) change over time. As new discoveries are made, evidence bases evolve, and our practices (hopefully) shift to accommodate these new developments. Such is the ethical code we adopt as healthcare professionals to act in an evidence-based manner for the good of our clients.
I am wary, however, of the neurodiversity-affirming movement and the zeal of some of its advocates, especially younger therapists. A perusal of their webpages reveals that many describe themselves as neurodivergent, or if that shoe doesn’t fit, as “neurodivergent allies.” Tried and tested therapeutic models are critiqued and repackaged to make them more “neurodiversity affirming,” or they are avoided altogether. In theory, this all sounds fine, but I worry about the unintended consequences of this movement, particularly when their demands are promulgated religiously and without nuance.
The term “neurodiversity” was coined in the 1990s by Judy Singer, a sociologist on the Autism Spectrum, and adopted to describe the idea that the brains of people with autism work differently. It now also encompasses those with presentations such as ADHD, OCD, and dyslexia. Rather than focusing on the deficits of such people, we are advised to take a strengths-based perspective to ensure acceptance and even celebration of their uniqueness. A recent article by Ariane Resnick on verywellmind.com states: “Neurodiversity embraces differences in brain function and behaviour as a natural manifestation of humanity’s variety, rather than viewing them as wrong or problematic.”
The neurodiversity affirming movement has produced many benefits. A focus on the unique qualities of those with disabilities reflects their inherent dignity and worth and should be a part of the practice of anyone working in the therapeutic professions. A push towards acceptance of those with differences in their physical, cognitive, and/or neurological make-up is similarly imperative if we are to work towards the wellbeing of those with disabilities. So, what could possibly go wrong?
In her excellent article “The Cognitive Distortions that Feed Neurodiversity Radicalism,” Lucy Kross Wallace, a person on the Autism Spectrum, describes her journey out of the neurodiversity advocacy movement and back to a more balanced point of view: “The path towards neurodiversity radicalism,” she writes, “begins with the adoption of autism as an identity and the perception that being autistic grants a person authority over all autism-related matters.” Problems have arisen, however, as the diagnosis of autism has changed over time.
Until 2013, a diagnosis of Aspergers Syndrome was used to distinguish those on the Autism Spectrum, who were higher functioning, from those with the diagnosis of autism spectrum disorder, who were generally assumed to be lower functioning. In 2013, the American Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSMIV) was replaced by the 5th Edition, DSMV. The new and updated edition subsumed the Aspergers diagnosis into the larger category of Autism Spectrum Disorder (ASD), which was assigned levels, ranging from level 1 (requiring support) to level 3 (requiring very substantial support).
This means that the differences in presentation of those in the “autism” category are wider than ever, and higher functioning individuals are essentially in the same diagnostic category as individuals with very severe disabilities that significantly impact their ability to participate in everyday life. As a result, the “voices” of those with autism, who speak about their experiences of various therapeutic techniques, are usually very high functioning but nevertheless considered to be authorities on the matter for all autistic people. As therapists, we are instructed to listen to these voices and allow them to inform our treatment approaches. But how can they speak for all those with autism, particularly when that category is now so capacious and incorporates such a difference in presentation and functional levels?
Take play-based therapy, for example. Play is considered “the work of childhood” and provides children with a framework within which to explore their world and develop the foundations of language, problem solving, social skills, symbolic thinking, and motor skills. Highly regarded professionals have noticed strong differences in the play profiles of children with autism, who will struggle with collaborative and imaginary play and will instead show a preference for solitary, cause-and-effect-type play, sorting and lining up items etc. These same professionals have developed interventions to gently shift children’s play skills and tolerance for different types of play, so that they engage in more symbolic and imaginary play and are more tolerant and inclusive of their peers in the process. When this is done well, it can result in significant gains in the child’s ability across a range of developmental areas.
However, the “neuroaffirming community” is now adamant that we should allow all children to play as they choose, and that we should not have play skills goals for children because, by its nature, play should be freely chosen. In their words, “All play is good play.” This new approach is informed by the voices of some of those with autism who have reached a seemingly successful adulthood and now recount that approaches that “forced” them to play in a neurotypical way were very stressful.
I will concede that any approach, when used clumsily and without regard for the client’s level of comfort and tolerance, can be counterproductive and even harmful. In the hands of a surgeon, a scalpel works well; in the hands of a carpenter, it doesn’t. But monochromatic thinking appears to be characteristic of the neurodiversity affirming movement, which makes bold declarations with great confidence and authority about what is helpful or harmful, and passes stern judgement on dissenters.
If these approaches are followed, a generation of young people may not receive the intervention that might have supported them as they develop the social and play skills needed to build friendships, strengthen language and communication skills, and learn to think more flexibly. Alternatively, there may be a generation of young people with autism who are relieved that they were never pushed to conform. We will have to wait and see.
When I began working as an occupational therapist in the early 1990s, there was a strong push towards more person-centred language. For example, we were encouraged to refer to our clients as “people with schizophrenia,” rather than “schizophrenics.” This made sense to me. I felt it reflected the dignity of the person, and the fact that their condition, whatever it may be, did not define them. I have continued that practice over the years and it now rolls off the tongue automatically.
However, neurodiversity movement voices now claim that it is wrong to refer to people with autism in this manner, and that we should instead refer to them as “autistic people,” or better yet, “autistics.” There is growing pressure to use this new locution in reports. Representative articles like this one from the Autistic Self-Advocacy Network set out the reasons for this change by emphasizing that autism is a core part of the person’s identity and pervades every aspect of their life. “Referring to me as a ‘person with autism,’” the author writes, “or ‘an individual with ASD’ demeans who I am because it denies who I am.” She adds:
When we say “person with autism” we say that it is unfortunate and an accident that a person is autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person. … Ultimately what we are saying when we say “person with autism” is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical.
Perhaps I am showing my age, but I have always believed that intent counts for a lot, and that we need to look for the intentions of the speaker and treat slips of the tongue and verbal gaffes with grace and tolerance. I experienced racism and bullying growing up but I have learned to look for the good in people and not to feel reflexively offended by every tactless remark. And to be honest, I would rather focus my energy on getting the best outcomes for my clients than on language semantics.
This attitude contributes to the scepticism and frustration I feel when I read articles like the one linked above. How can someone possibly know the intent of a speaker from just a few words, especially when the preference changed yesterday? I look at my nephew, a young man of 24 with severe autism and intellectual disability, and I celebrate every fibre of his being and the joy he has bought to our family. To me, he is an individual who happens to have autism. It does not define him or his worth. I don’t know what his life would have been like if he did not have autism. I know aspects of his life have been really hard but I love him as he is.
That said, surely it is permissible to acknowledge the difficulties associated with a condition such as autism. A refusal to do so is unlikely to help those with autism or their families, some of whom struggle significantly with many aspects of their own or their family member’s behaviour and functional limitations. This is not about a failure to love and appreciate those with disability in all their uniqueness—it’s about acknowledging reality and calling it what it is. To those who demand that we listen to the movement’s voices, I say: All voices deserve to be heard, including those of families at breaking point trying to deal with behaviours such as self-harm and faecal smearing, those who are grieving the fact that their social awkwardness and gaffes are harming their relationships and who wish it were not so, and those who may have experienced therapeutic benefits from many of the techniques that are now scorned.
A perusal of Twitter, if you have the stomach for it, will show how heated the debate about neurodiversity has become. “THERE IS NO SUCH THING AS SEVERE AUTISM,” one user insists, “just as there [is] no such thing as ‘severe homosexuality’ or ‘severe blackness’.” Ooh-kaay... In the thread that follows, he goes on to offer further context and clarification, adding that the term “severe autism” fails to take into account external factors that make life for people with autism difficult. This hardly serves to justify his claim. When I read his tweet, I think about some of the families I have encountered in my work in this field, who have had to make the heartbreaking decision to relinquish care of their children as they simply cannot support their behavioural and functional complexity. And when I try to imagine what they might feel reading a tweet like that, my heart breaks and my blood boils.
Or consider the treatment meted out to Autism Speaks, a charitable organization which seeks to help—or, according to neurodiversity activists, “claims to help”—autistic people. According to this article in the Journal of Gender, Social Policy & the Law, however, Autism Speaks “is closer to a hate group” because it “promotes the idea that autism is a flaw, is evil and harms others.” The author adds:
Autism Speaks also recently partnered with Google to research a cure for autism. This sparked outrage among the autistic community and was immediately likened to Nazi policy. “Curing” genetic variations, although not actively harming living autistic people, promotes the eugenic ideas of genetic inferiority and gene pool cleansing.
I have watched health professionals who are captured by this ideology scorn parents who are attempting to find a cure for their child’s autism. To which I reply, “What would you do if that was your child?” Isn’t it normal to want to give them their best shot at life? Is it likewise eugenics to take your dyslexic child to a tutor? Is it eugenics to give a person with severe ADHD medication to enable them to experience success in life? Opponents of a cure embrace the social model of disability, which holds that it is society that places limits on a person not their disability. When applied to autism, neuroaffirming advocates claim that society’s lack of understanding, tolerance, and acceptance creates struggles for people with autism, rather than their “deficits.”
This approach makes perfect sense to me when considering issues such as wheelchair access in public spaces, and some room for this way of thinking is very important if we are to aim for a more accepting and inclusive society. But when applied to other difficulties, some of which can be overcome, or at least reduced, who has the right to assert that it is society’s problem and that we should simply embrace difficulty? Who has the right to withhold an intervention that could potentially improve life for an individual and their family? We need to tread carefully, but the right of every human being to have the best chance of a successful and productive life trumps the potential hurt feelings of others.
So, there we have the conundrum: the understandable human need to feel unconditionally valued and respected versus the understandable human need to give yourself and your child the best shot at life possible (which may include acknowledging areas of difficulty and trying to remedy them). This complex and sensitive dilemma is being navigated against the backdrop of a needlessly toxic and angry Twittersphere, where we emote rather than think critically. Can’t we do both?
Nuance is imperative if we are to move through this impasse. We need to think clearly and speak candidly about these difficult topics. Rather than react in a polarised manner, we need to step back and consider the complex feelings of those with autism, their families, and their caregivers, as well as their needs and the functional limitations imposed by their disability. We need to be prepared to look at each person as an individual with different needs, abilities, and circumstances. All of those with disabilities deserve to feel valued and respected. And all human beings deserve the best possible opportunity to thrive, which often includes an acknowledgement of their areas of difficulty and interventions to reduce those difficulties.
To those who reflexively embrace neuroaffirmative action with unquestioned zeal, I would urge caution and a willingness to consider the potential fallout. To my fellow clinicians, I say please don’t abandon previously respected and valued therapeutic interventions, and allow stressed, struggling, and grieving parents to speak freely and without judgement about what life is really like. And to those who only want to discredit the neuroaffirming movement, try to remember that the opposite of an error is usually the opposite error. Despite the extreme views of many within this community, good has come from it.
As for me, I refuse to be carried along by the tidal wave of peer-group pressure to adopt a fashionable approach without question. I will continue to be open to evidence, use therapeutic tools with care (as I have hopefully always done), treat all clients with respect, encourage them to celebrate their uniqueness, and attempt to give my clients their best hope of an independent and happy life possible.