Am I autistic or neurodivergent?
That is a question I’ve been pondering over the past couple of weeks. Using the term “Neurodiversity” rather that “Autism” has become the norm over recent years, allowing a wider range of people to be included in our community. In fact, when we started this business 5 years ago, we almost decided on the name “The Neurodiversity Shop” and not Autism Resources SA. We were even criticised initially for identifying with autism so directly.
What is Neurodiversity?
According to Psychology Today, neurodiversity is the idea that variation in brain function exists across the population. Differences such as autism and ADHD have existed throughout human history and are not due to faulty neural circuitry. Rather than viewing them as such, neurodiversity embraces autism as a different way of thinking and behaving.
Proponents of neurodiversity believe that society should work to eliminate stigma, create accommodations, and fully accept people with autism as capable of contributing to society. The paradigm stands in contrast to the medical model, which conceives of autism as a disease to be treated or cured.
The Neurodiversity Movement
The neurodiversity movement was launched by Judy Singer, an Australian sociologist who is herself on the autism spectrum and coined the phrase “Neurodiversity.” Embrace Autism explains that Singer saw neurodiversity as a social justice movement, to promote equality of what she called “neurological minorities” — people whose brains work in atypical ways. As she defined them, those minorities included people with autism as well as ADHD and learning differences. Singer felt that these differences should not be viewed as deficits, but rather as normal and potentially valuable variations on the way brains work.
A main goal of the neurodiversity movement is to shine a light on the benefits of this diversity. For example, the creativity that so often goes with learning differences like ADHD and dyslexia, or the hyperfocus and novel perspectives associated with autism.
Singer stated that even assumptions about perception which we tend to take for granted—that we all more or less see, feel, touch, hear, smell, interpret, process, and broadly speaking experience in more or less the same way unless visibly or otherwise obviously disabled—are dissolving. For this reason, she said that the neurodiversity movement must keep gaining traction, so that differences in the human condition can be more readily acknowledged, explored, and even utilized.
Neurodiversity as identity
Neurodiversity has also evolved from a focus on individuals with a formal diagnosis of autism, ADHD or a learning disorder to include a broader group of people, many of whom self-identify as neurodiverse.
Cynthia Martin, PsyD, the Clinical Director of the Autism Center at the Child Mind Institute, describes this shift:
“The term used to be used to describe people who either had a clinical diagnosis or were borderline, with symptoms that are near the clinical threshold for a diagnosis,” she explains. “More recently, what I’ve seen is broadening to include anybody who identifies with it. People who feel that they think or process outside of the box.”
Neurodiversity, she says, has become something many people, especially adolescents, are increasingly comfortable identifying with. For kids who are struggling socially, identifying as neurodiverse can be a way to make sense of what they’re going through. The concept gives them a brain-based explanation for their difficulties — “Oh, I’m like this because my brain works differently.” It can also help create a sense of community with others who identify as neurodiverse.
Some children are now diagnosing themselves with conditions that fall under the umbrella of neurodiversity, seeing a potential diagnosis as a way to validate their experiences. “The result is that we’ve been seeing parents come in with their self-referred 11-to-13-year-old who wants to be evaluated for autism,” says Dr. Martin. These children may or may not end up with autism diagnoses, but an evaluation is often an important step toward helping them feel better and cope with challenges.
Are Autism and Neurodiversity the same?
According to Reframing Autism, the liberation of not being labelled neurologically impaired or deficient has proved an enticing prospect for autistic individuals. Because we – and many others with different neurological variances – want the opportunity to exist without judgement. The neurodiversity paradigm also doesn’t presume to categorise neurodivergences into “healthy” or “deviant” differences.
So, within the neurodiversity paradigm, autistic and neurodivergent are not equivalent, but autistic brains are neurodivergent, since they do not develop along the expected trajectory. But there are many other expressions of neurodivergence and all are invited to just “be” in the world without judgement. At the moment included in the definition of neurodivergent are:
- Autism
- Attention Deficit Hyperactivity Disorder (ADHD)
- Obsessive Compulsive Disorder (OCD)
- Dyslexia
- Dyspraxia
- Tourette’s Syndrome
- Dyscalculia
- Dysgraphia
- Meares-Irlen Syndrome
- Hyperlexia
- Synesthesia
- Anxiety
- Trauma
- Sensory Processing Disorder
- Rejection Sensitive Dysphoria (RSD)
I like the Euler diagram that Adaptive Edge Coaching uses to illustrate the difference:
The problem with the Neurodiversity paradigm
As argued by Amy Lutz in her Psychology Today article "Please Stop Whitewashing Autism," it is not that simple. Adopting the Neurodiversity paradigm may have noble intentions, but it whitewashes the "other side of autism."
According to Moheb Costandi in the Aeon essay "Against Neurodiversity," the neurodiversity movement has indeed empowered many with autism, for example Greta Thunberg who described it as her 'superpower'. But the movement is proving to be harmful in a number of ways.
He argues that neurodiversity advocates can romanticise autism. While many with mild forms of autism might lead relatively normal daily lives with little or no assistance, many who are more severely affected cannot function properly without round-the-clock care.
In their zealous pursuit of autistic rights, some advocates have become authoritarian and militant, harassing and bullying anyone who dares to portray autism negatively, or expresses a desire for treatment. This extends to autism researchers in academia and the pharmaceutical industry, and also to the parents of severely autistic children.
For example, John Marble, founder of Pivot Diversity, an autism advocacy organisation in San Francisco posted this on Twitter in 2017:
According to Jill Escher, president of the National Council on Severe Autism and mother of two non-verbal autistic children, neurodiversity advocates cherrypick naive, feel-good stories that portray autism falsely instead of grappling with the reality. She says "If my child is having a meltdown at the supermarket, or taking his clothes off, or screaming, I want people to appreciate that his behaviour comes out of a difference in his brain wiring. But do I think his behaviour and wiring is natural? Absolutely not."
"If you're happy being autistic and think of it as part of your identify, that's great, and I don't want to upset you or hurt you, but don't tell me I can't try to help ease my sons' suffering,' says Bruce Hall, author of Immersed: Our Experience with Autism (2016), about his two autistic sons. "For them, autism is a life-altering, cruel disability, and I'd do anything to help them feel good and give them a better quality of life."
"Neurodiversity advocates ignore the harsh realities of severe autism, and want to forget about my sons and others like them," he added. "They've done a good job of hijacking the message and monopolising the discourse on autism, and are controlling the narrative so tightly that people like my sons will have no choice in the world."
So, am I autistic or neurodivergent?
My mother-in-law had a saying "alles wat te is, is sleg vir jou behalwe te voet en te perd." It doesn't really translate well to English, but it implies that maybe the neurodiversity movement is taking it too far. But many advocates of ABA and "autism cures" have gone way too far as well, therefore we should balance the need for acceptance and the need for treatment.
Yes, I am neurodivergent, but first and foremost I am autistic. I love the fact that I can solve complex problems and process huge amounts of data, but hate that my anxiety sometimes prevent me from doing the simplest tasks. I cannot stand watching my children's daily anguish and frustration and will try any treatment or medication that may decrease their suffering.
But I will research those treatment or medications objectively before exposing them to it. And test it on myself first to understand the impact and side effects.
Balance.