Especially for parents who don’t have ASD themselves, and who don’t have family members who do, hearing a child’s diagnosis can open up a whole new world – different types of therapies, organizations and advocacy groups, and a whole new list of vocabulary words. As parents of children with ASD explore this new reality, they’ll find groups, people, and strategies they agree with to a greater or lesser degree. There’s also a good chance that, in exploring this brave new world, they’ll come across a few debates that have been going on since long before their children were even born.
Person-first and identity-first language
Both person-first language and identity-first language are ways of talking about disability and identity that come from a place of wanting to show respect for the people they’re talking about, but they do this in ways that can sound like the opposite of each other. Phrases like “a person with autism,” or “a child who has been diagnosed with autism spectrum disorder,” are examples of person-first language. Person-first language is designed to emphasize the personhood of whoever is being spoken about, rather than referring to them by the name of a condition, as if that condition defines them. Person-first language has been used since the 1980s, and at this point, it’s the standard that publications and style guides default to.
“Identity-first language” on the other hand, is a way of talking about disability that advocacy groups and individuals sometimes prefer specifically because person-first language, like “person with ASD” divides the person from the condition. More than that, advocates of identity-first language argue that saying someone “has autism” implies that autism is a problem that should be eliminated from them, rather than a part of who they are. Since many people understand autism as a natural part of their identity, they prefer identity-first language – “autistic person,” for example. Identity-first language is more closely associated with neurodiversity as a school of thought.
Both of these ways of speaking are based on good intentions, and many people don’t have strong feelings either way, but others do feel like one way of speaking is better aligned with the way they think about themselves. Baby is a little young to be figuring out the language she would prefer, but someday, she may have thoughts about it to share! Until then, the fact that you respect her, and want to speak to and about her in a way that shows that respect is what’s going to end up mattering to her, no matter what type of language you end up using.
(Note: Since person-first language is the American Medical Association style default, Ovia will be using person-first language in the app, but Ovia fully supports each individual’s right to self-define the type of language used about their identity.)
Pathology and neurodiversity
Within autistic communities, there are a few different ways of thinking about ways of living with ASD. One divide parents may come across is the discussion of the difference between the neurodiversity paradigm and the pathology paradigm. Traditional, treatment-based interventions would fall under the pathology paradigm, which defines autism spectrum disorder through the lens of pathology, or disease.
This can seem like the instinctively right way to approach ASD for many parents – after all, once you’ve got a diagnosis, you follow it up with treatment, right? But for a number of autistic activists and advocates, a school of thought centered around neurodiversity makes the most sense. In this system of thought, ASD is just one part of the infinite diversity of the human experience. Different brains work differently, but whether that difference is an impairment or a problem depends on the society and context of that person’s life.
Parents of children with autism will come across a wide range of new ideas as they explore different ways of thinking about their children’s realities. Some of the ways of thinking may work for your family, and may give valuable insight into the best way to help your child live the fullest and most joyful life she can. Others might not work so well for your family in particular. As you explore, it can be helpful to keep in mind that the more ideas you come across, the more tools you’ll have in your toolbox for helping Baby as she grows.