AAP Voices Blog

A Primer on the Words We use to Describe Autism 

Neurodiversity, profound autism, identity-first and person-first language - you may have heard these words recently and asked yourself what they mean, what the distinctions are, and when to use them. Words matter and patients and families for whom you care are listening. Each of these terms brings with it a history and broader implications.  

The four authors of this blog include two developmental-behavioral pediatricians who are members of the AAP Council on Children with Disabilities, and two parents of young people with autism. We collaborated on this blog post to explain various terms used to describe autism, family members' perspectives, and considerations for incorporating these terms into your own practice.   

Neurodiversity is a framework that embraces the idea that people experience the world in different ways. Differences in thinking, interacting, and behaving are not viewed as deficits, but rather as points along the natural continuum of neuro-typical to neuro-divergent. Neurodiversity is used as an umbrella term to describe various conditions along that continuum, including autism, ADHD, and learning disabilities. Neurodiverse-affirming language conveys respect for and acceptance of individuals who identify as neurodivergent and often focuses on a person’s strengths. 

One challenge in adopting neurodiversity-affirming language is that families of children who experience greater levels of impairment, such as those who have greater communication challenges or more significant self-regulation challenges, have described that they feel that their experiences are invalidated. They do not necessarily see their children’s experience as reflected by neurodiversity. An additional challenge is that individuals on the spectrum with significant communication impairments are not reflected in the experiences of autistic self-advocates, who by definition have more advanced communication skills.  

The term profound autism was introduced in a 2021 Lancet Commission report to describe individuals who are unable, or are unlikely as adults, to live independently. Those who fall into this category can exhibit signs of substantial intellectual disability, limited language skills or both. Individuals who embrace the neurodiversity movement do not always accept the term profound autism, arguing the term over-simplifies the experiences of people on the spectrum and may increase stigmatization. However, some families who do not see their children and young adults represented on the neurodiversity continuum find their experiences reflected in profound autism.  

“When I use the term profound autism, it means that Sam is going to need support throughout his lifetime,” said Alicia Brewer Curran, a parent of Sam, a young adult with autism. “We all need support, but he’s going to need a significant amount of support throughout his lifetime to live his best life.” 

Many individuals who embrace neurodiversity often use identity-first language, such as referring to those on the autism spectrum as autistic individuals. Embracing an autistic identity is a way to affirm neurodiversity principles. 

“When I introduce my kiddos to anyone, I usually explain ‘they’re autistic.’ It’s usually my way to give them a head’s up that they may display unusual behaviors that you may not have seen before. You may be hearing some loud yelling, grunts and sometimes tantrums. Those are some things that come with having children on the spectrum,” said Shanice Oates, a parent to two children on the autism spectrum, Symir and Samaj. “When those things occur, you’re already aware that these are things that happen with people on the spectrum. When I talk about them, I use ‘they are autistic.’ Autistic describes them, who they are as a person. It’s the behaviors they display. It’s part of who they are. I don’t want to take it away from them. It’s just who they are. It’s why they are the way they are. I give people insight into who they are and why things may occur, why there’s a speech delay, or non-responsive behavior. It’s all a part of being autistic.”  

Person-first language leads with the term “person with” a condition, such as “person with autism,” which aims to humanize the person before disclosing a condition or diagnosis. Sam’s parent Alicia prefers this approach, saying Sam’s autism doesn’t define him as a person. 

“I do prefer person-first language. My son, Sam, walks straight out of the autism 101 manual. He is about as autistic is one can get. He’s big, he looks the part, you can see it coming—his gait, everything. Autism is all anyone sees when they meet Sam. That breaks my heart. I want them to see him as something other than just an autistic person,” Alicia said. “I want them to see him as the funny, loving, incredible person he is. He is an amazing human who I have learned so much from. Sam loves like everyone on earth should love. If people loved like Sam, the world would be a better place. He is funny in his own way. He is intuitive. How people perceive Sam is skewed because he is very autistic and minimally speaking, yet he is very intelligent. I want people to look at my son like a person. He’s an amazing, phenomenal individual. Out of respect for him, he’s more than autism, and that’s why I like person-first language.”  

Recognizing the importance and meaning of using each of these terms is a start. Clinicians themselves may have strong feelings about terminology, because of their own personal or family experiences.  

When discussing autism with families, clinicians should honor family’s preferences whenever possible. If families use particular terms or use either identity-first or person-first language, clinicians can adopt their terminology. If their preference is not clear, clinicians can ask. Many families and self-advocates accept the term “on the spectrum” as generally more neutral, so this can be accepted until and unless a family states a strong preference.  

“Our opinions are based upon our life experiences, and everyone has a different life experience. So there’s going to be differing opinions.” - Alicia Brewer Curran 

*The views expressed in this article are those of the author, and not necessarily those of the American Academy of Pediatrics.