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How I See It is a new series on PAAutism and ASDNext. In each installment, we ask people in the Pennsylvania autism community – individuals, family members, professionals and more – to share their thoughts on a particular topic. You can see previous installments here.
This month’s topic is identity – specifically, identity-first vs. person-first language. Is someone autistic? Are they a person with autism? That’s what these writers will discuss.
“‘Hi, my name is Khylil Robinson and I am autistic.’ When it comes to introducing myself to others about my disability, I never really know how to express myself. Whenever I describe myself, I usually just use the direct term (identity-first) rather than person-first term.”
“When we look at ‘identity-first’ and ‘person-first’ language, both terms are describing life experiences. I don’t think either name attempts to negate the condition of ASD. Both elaborate upon a person’s unique life history.”
“When I was 9 years old I was diagnosed with Asperger’s Syndrome. A few years later, a psychologist explained to me that I had, “High Functioning Autism.” I looked up what that meant and according to Wikipedia, it’s a term applied to ‘people with Autism who don’t have an intellectual disability (an IQ of 70 or less).”
Out of Sync Woman says:
“I’ve never really thought about what language I use when I identify myself. I use the phrase “I have Autism” but that’s mostly for simplicity’s sake because I find the phrase “a person with Autism” clumsy when I’m referring to myself. I can see both sides of the argument because Autism is a huge part of me however it’s not the only part.”
The Autistic community is vastly heterogeneous, comprised of people with a wide range of interests, talents, experiences, and opinions – just like any community linked by a single characteristic. And, as is the case with any community, those within it are its experts. I am not a member of the Autistic community, but I have done my best to let the experts inform my decisions about whether to use person-first or identity-first language.
Like most helping professionals who were trained during the past few decades, I was strongly encouraged to use person-first language.
This language supports the idea that a person cannot be wholly defined by their disability; rather, one’s disability is just one aspect of their personhood. My training taught me that using the label “person with autism” signaled to clients and families that I saw them as people before I saw them as disabled.
However, I have learned from Autistic self-advocates that identity-first language can be a tool to reduce stigma. We often use person-first language when a label is seen as bad, unwanted, or in need of curing. Author and Autistic self-advocate Lydia Brown compares the labels “a person with cancer” and “a person with Autism” in this insightful article:
A person with cancer wants that cancer to be cured and separated from them at all costs, while an Autistic person cannot be cured of their autism, so the use of identity-first language (i.e., “Autistic person” or “Autistic”) can signal that the label is an important aspect of who they are rather than a disease or something that is unwanted.
Despite my strong adherence to the “person-first” rules during the beginning of my career, I now mostly use identity-first language to describe Autistic people, as I’ve learned from the community that it is often the preferred label among this group. Of course, not all Autistic people have joined the identity-first movement, and I am mindful of this fact. I do my best to learn the individual preferences of the people I meet and use person-first and/or identity-first language depending on those preferences.
As educators, we have historically been taught, when engaging in conversations regarding individuals with disabilities, to always address them using person-first language. Mindfulness of person-first speech is a topic that has been heavily instilled in us throughout our years of schooling. It is a way of speaking that I have adopted, in part because it’s how I was taught, but also because I see the value in the theory behind this form of speech. Putting the person before their disability recognizes their inherent worth as a human rather than emphasizing the disability as what defines them. It’s a way to avoid labels and allows the person to be seen first as a person. It promotes inclusion and acceptance regardless of any diagnosis he or she may possess.
Much of my professional experience has also favored person-first language both in the classroom and within the community. In talking with a former student about his opinion on self advocating for himself and others who also have Autism he stated the following “I can understand both ways but for me, I identify myself as a person before any other diagnosis because I want people to feel comfortable talking to me before they second guess if they should say something or get nervous that I’ll be offended. I’m an open book and I want people to ask questions and mostly I want them to see me – unique in my own way but like them, looking to belong and take it all in” As it stands not only has this terminology made an impact on his life but it has shaped my perspective on inclusion within the field of education.
There are others who use person-first language as part of their self advocacy because they want other people to know that their disability is not what defines them but rather what helps make them the unique person that they were created to be. While I continue to support person- first, I am grateful for those self-advocates who use this platform to highlight identity-first language as a way to emphasize their pride and confidence in being who they are. To advocate through identity-first speech to share their value as someone who holds any number of diagnoses is someone who understands that they are inherently worthy humans created to share their gifts with others through their individualized skills as edifying advocates. Through discussions and talking to those who are self-advocates, I begin to understand the theory behind both forms of speech and it has shaped my professional demeanor for the better.
I have an 18 year old autistic son. I have an 18 year old son with autism. No matter how I write it, the reader gets the point, but, for individuals with autism, how you write it, how you say it, may matter.
When my son refers to his autism diagnosis, he typically uses the phrase, “I am autistic” not “I am a person with autism”, but, quite honestly, he doesn’t really care either way. My son knows he has autism/he is autistic, but, it’s not the first thing he tells everyone when he meets them. What typically comes first is that his name is Ryan. Then if prodded further, he might tell you where he goes to high school, what grade he is in, the current musical theatre show he is in, the latest game he is playing, or the funniest meme he recently saw on Reddit. In other words, he wants you to know what makes Ryan uniquely Ryan. Chances are pretty good, autism, in identity first or diagnosis first language isn’t going to come up at all. Unless you ask him. And as a mother, that’s my suggestion.
For many members in the autism community this person first or identity first language is very important. Some autistic individuals/individuals with autism do care, so if they are able to communicate, the best way to know, is to ask them which they prefer. Regardless of what they tell you, remember to always see them as a unique autistic individual or a unique individual with autism and treat them with the respect and individuality they deserve.
When I grew up in the 1970’s and 80’s, the way in which people talked about others was vastly different than it is today. Whether it was race, culture, creed, or other qualities such as a disability, people openly referenced these traits in everyday language. Prime-time television shows such as All in the Family and famous comedians like Eddie Murphy commonly referred to these characteristics for purposes of humor. Back then, these references were not automatically assumed to come from a place of hate (ignorance maybe, but not hate) and people actually laughed at this type of humor. But, times (and social norms) have changed. Today, the same references would be considered offensive and inappropriate.
Having grown up at the time I did and being exposed to the different ways people talk about others, I do not automatically view certain terms as “offensive” right out of the gate. As a behavior analyst, I am always analyzing the function of others’ behavior, that is, why do people do what they do? I have met some who clearly choose their words as an expression of hate towards others and, this is incredibly offensive. However, the same words could be used by someone else, from a different generation for example, and I perceive the intention completely different. I have similar flexibility on my views of person-first language.
My first introduction to person-first language was in graduate school in the early 1990’s. Prior to graduate school, I had only heard “disability-first” language (e.g., “He is blind”, “She is autistic”, or even… “He is mentally retarded”). I quickly learned that in my future profession, we instead say, “He has visual impairments”, “She has autism”, and back then, “He has mental retardation”, or today, “He has an intellectual disability.” The idea is that someone is a “person” first and that a disability shouldn’t define him or her.
I was taught that using person-first language is how we advocate for those with disabilities and it was my responsibility to do so. I have happily complied for almost 3 decades. Over the years though, I’ve learned that not everyone feels this is a form of advocacy. In fact, some people with disabilities, to my understanding, feel offended by person-first language as perhaps the implication is there is something shameful about having a disability.
To me, is there is no definitive right or wrong about person-first language; it’s all about what an individual prefers. My given name is “Cynthia” but I prefer “Cindy.” Once someone knows my preference, I expect them to honor it. The same is true with person-first language. If I describe someone as “having autism” and later learn they prefer “autistic” then this is the language I will use.
We are all uniquely created. You and I are diverse in our abilities and perspectives. Together with respect we have the ability to build a community of acceptance and appreciation.
From my perspective as a parent of a young man with Asperger’s this is my personal goal, to facilitate in building communities where his abilities and perspectives are accepted and appreciated. A respectful inclusive community will benefit everyone.
Using Person First Language is a simple first step to respecting diversity.
My son is not his diagnosis, he is beautifully and uniquely created and should be addressed showing respect for who he is as a person.
Nickolas’s diagnosis of autism came as a surprise to all who knew him. The characteristics of his autism were not seen until he was about 12 months old. During his whole first year of life, every milestone was right on target. Nickolas was a good baby. He ate when he should. He slept when he should. He crawled and walked when he should. He started to talk and had baby words. I suppose that his period of normal development is why it was so hard to believe that Nickolas would be diagnosed with autism or what we now know as regressive autism.
At 27 months old, Nickolas was not only diagnosed with autism, but with a whole host of other psychological issues. He was diagnosed with Sensory Processing Disorder, behavior issues, and speech/communication problems. He lost his ability to speak and to this day has never said another word. By the age of 3 years old, Nickolas was also diagnosed with Intellectual Disabilities (ID), Obsessive Compulsive Disorder (OCD), and Oppositional Defiant Disorder (ODD). The characteristics of Nickolas’s autism were difficult not just on him, but for all of us. Our family made a lot of sacrifices and accommodations to keep Nick safe and happy. Nickolas continues to strive to learn what comes so naturally and effortlessly to others his age.
Nickolas’s autism is only one of his many diagnoses. The characteristics of his autism do not define him any more than the characteristics of his ID, OCD or ODD. They are not who he is. They are just characteristics. I suppose that is why I prefer to use people-first language when I refer to Nickolas’s autism. I say that Nickolas has autism. He also has brown hair, brown eyes, and a beautiful smile. Autism is not all-encompassing of who he is.
In my view, using people-first language seems to be more respectful as to the person Nick is over using identity-first language. I am the last person who would want to offend anyone, let alone my own son. Since his autism is only part of his many characteristics, I will continue to say that “Nickolas has autism.” As for the way others would like to be addressed, I suppose that it would be advantageous to ask them what they prefer. We need to be more accepting of all abilities and of the differences that we all have. Let’s not debate amongst ourselves as to who’s right and who’s wrong. You have not walked in my shoes any further than I’ve walked in yours. Accepting that we are all unique with various beliefs and diverse values will help us to accept the differences. Let’s just continue to forge ahead and advocate for a better life for all.
This information was developed by the Autism Services, Education, Resources, and Training Collaborative (ASERT). For more information, please contact ASERT at 877-231-4244 or info@PAautism.org. ASERT is funded by the Bureau of Supports for Autism and Special Populations, PA Department of Human Services.