My 15-year-old son and I were discussing language on the way to school this morning in the car. I prefer the term “I am autistic,” while he prefers to say “I have autism.” When I asked him why, he explained to me that, in primary school, some boys would use the term “That’s autistic” as an insult whenever someone behaved differently or did something they do not agree with. Now. I’m not going to force him to use language that I prefer, being a 15-year-old with autism is hard enough already, but it did make me think about how we use language.
Identity-First vs. Person-First Language
There are two main approaches to describing autism, person-first and identity-first.
- Person-first (my son has autism): The argument for this approach is that it doesn't define someone by their diagnosis. It's not labelling somebody.
- Identity-first (my son is autistic): The argument for describing someone as autistic is that it's an inherent part of their identity and something to be proud of.
In research and clinical work, person-first language is typically used when talking about treatment or recovery. For example, a doctor refers to “patients with cancer” rather than “cancerous patients” because the goal is to treat and eliminate the cancer.
Also, groups aiming to “cure” autism tend to use person-first language when referring to autism and are generally considered to elevate the voices of non-autistic people while being unresponsive to feedback from the autistic community. Many autistic people have written and spoken about why identity-first language is important to them - Person-first language implies that the person is the same with or without their diagnosis, and most of the autistic community agrees that their autism is a fundamental part of who they are.
Autistic Not Weird Survey
In March 2022, autism advocate Chris Bonnello, through his website Autistic Not Weird, asked 11,000 people about this.
- Just over 76% of autistic respondents indicated that they wanted to be referred to as an “autistic person” rather than a “person with autism.”
- Just under 4% indicated a strong preference for “person with autism.”
- 15% indicated that either term felt appropriate.
According to Bonello, "This does seem to back up the experience of many of us in the autism community, that professionals are taught to use person-first language but those on the spectrum themselves are more willing to claim the word autistic as their identity."
"I see the arguments for 'person with autism' but I feel tempted to give the comeback that I don't see my autism as something that is so terrible that it has to be pushed to the end of the sentence as if it's not part of the real me."
He also flags the danger of becoming too caught up in the debate:
"I spent far too many years battling a speech delay to force myself to stop mid-sentence several times just to order my words in the way that other people choose to be the least offended by. I think, yes language does matter, but we shouldn't be so pre-occupied with it that it overrides the content of what we are saying about autistic people."
Other Terms Used
In an article for ABC Australia, Chris Varney of the I CAN Network, a mentoring program for young autistic people, says that a lot of the families they work with are also comfortable with the descriptions "on the spectrum" or "on the autism spectrum" as middle ground.
"We meet the family or the young person where they're at," he says. "However, when those families have the bandwidth and readiness to think about autism differently and embrace their young person's autistic strengths and identity, then we find they take up identity-first language."
Varney's advice when you meet someone with an autism diagnosis? Just ask. "Their language is their choice, and it isn't anyone's role to shove a language down their throat," he says.
High Functioning vs. Low Functioning
Two other terms most of us really don’t like are high functioning and low functioning autism. According to Autism Parenting Magazine, the difference between high functioning autism and low functioning autism is behavioural. Low functioning autism causes behaviours that inhibit the ability to conduct daily life, while children with high functioning autism have similar abilities to his/her neurotypical peers.
Gary Weitzen, the Executive Director of POAC Autism Services in New Jersey, USA, says that when a person is characterized as “low functioning” we tend not to expect very much of them. When expectations are low, the bar for learning is also often set too low. The thinking is “That’s his level of functioning and well, yeah, we’re doing what we have to do because they’re so low functioning.” Here’s the problem with that – every person in the field, every parent, every teacher, everybody who knows someone with autism, knows individuals who require very substantial support that can do amazing things. Neurotypical people tend to operate at one stable level, but autistic individuals often have splinter skills. For example, some autistic people may be able to do high level math calculations but are not able to handle simple money exchanges at the grocery store.
By saying someone is “low functioning” you totally ignore all of their gifts and their abilities and set the bar way too low. Doing this limit what the person learns and hinders their capacity rather than maximizing it. Saying someone is “high functioning,” ignores all of their challenges entirely. So, if a person is fully conversation, if they hold a job, if they are a published author even, the assumption is they don’t have any difficulties or needs for support. That’s ridiculous.
What about Neurodiversity?
In 1998, sociologist and autistic rights activist Judy Singer coined the word neurodiversity as a synonym for neurological biodiversity. Just as biodiversity indicates the coexistence and differentiation of different species in an ecosystem, so neurodiversity defines the natural variation among all brains in the human species. According to this idea, we are all neurodiverse precisely because, although we belong to the same species, there is no brain equal to another.
Inside the infinite variety of human neurodiversity, however, some people share a number of characteristics compared to others. The majority of individuals undergo a neurological development which, apart from the individual differences, can be considered typical, therefore we call them neurotypicals.
A smaller part of the population (between 15 and 20%), share a neurological development that in some respects differ from the majority and, from a statistical point of view, we can describe it as atypical. These people are defined as neurodivergent, and among them we can have autistic, dyslexic, ADHD, tourectic, dyscalculic, dysgraphic individuals.
The concept of neurodiversity allows us to look at various neurological, sensory, communicative, and social characteristics as natural differences in human development. In this way, when outside the clinical setting we move away from a purely medical-rehabilitative model, stimulating an interaction in which these differences are not necessarily perceived as deficits.
So, am I neurodiverse or neurodivergent?
According to Sue Fletcher-Watson of the University of Edinburgh , there is a basic linguistic / grammatical difference between the two words. Diversity is a property of groups. It requires variability between things. You only have a diverse range of herbs in your cupboard if you have lots of different ones. “Diverse” is not a synonym for “rare”. Rather, rosemary, basil, thyme and parsley make up a diverse group of herbs.
Neurodiverse refers to a group of people, some of whom are neurodivergent. A neurodivergent person is someone whose neurological structure and development are atypical. Neurodiversity is about populations - a group of only neurotypical people is not neurodiverse, nor is a group of only autistic people - while neurodivergence is about individuals. Neurodivergence — a term now used to describe people whose brain develops or works differently from most people’s, for medical or non-medical reasons — can bring day-to-day challenges that are often invisible to those around them.
I am autistic. I have high-functioning days and sometimes I have low-functioning days. I am also neurodivergent. And when by brain gets twisted into knots trying to hold too many thoughts, I might even feel a bit neurodiverse. But, ultimately it is much more important to allow autistic voices to be heard than to focus on language and what individuals call themselves.