Upriver Press author receives national recognition
Good news must be shared! The Upriver Press book You, Me, and Autism by author Phoebe Jordan has been selected as a finalist for a national book award presented by the Independent Book Publishers Association. We will know the which book wins the gold medal on May 15. Regardless of the outcome, to be selected as a finalist is a great honor.
There are many other good books about autism, but Jordan’s book is rare. She is a high-level scholar whose research has been published in major international academic journals. She’s completing her PhD at the University of Victoria in New Zealand, in coordination with Stanford University. Importantly, she is also autistic. As a result, the book presents an elegant integration of academic research with the author’s personal experiences.
In commemoration of this important book award, we are publishing an excerpt from Jordan’s book. As the title suggests, the book is designed to help people who are not autistic relate well with their autistic friends, relatives, and professional colleagues. In this section quoted below, Jordan focuses on the importance of how to refer to autistic people and why. The language surrounding autism can negatively or positively affect how people perceive and relate with autistic people.
From You, Me, and Autism
There are two primary ways to refer to an autistic individual: person-first language and identity-first language. Person-first language emphasizes the individual before the condition (e.g., a person with autism), whereas identity-first language emphasizes the contdition as an integral part of the individual (e.g., an autistic person). The distinction between these two approaches is not merely semantic; it reflects deeper attitudes and beliefs about autism. It is crucial to respect each autistic person’s preference. Listening to and honoring our choices acknowledges our identities and fosters a more inclusive and respectful environment. Being mindful of this choice shows consideration for our autonomy and contributes to a supportive community.
Person-first language places individuals before their condition in a sentence, such as saying, ‘I am a person with autism.’ This approach aims to emphasize individuality rather than defining people by their condition. Some individuals prefer person-first language because it highlights that autism alone does not define us. It shows others that we are unique individuals with our own strengths, challenges, and interests. The person-first perspective originated from the medical field, which historically attached negative connotations to autism and other disabilities and differences. In the past, doctors often referred to autism with words like symptoms, deficits, atypical, abnormal, or problem. These terms have propagated throughout society. As a result, people sought to separate the individual from these negative associations by using person-first language. Research indicates that professionals and parents are more likely to use person-first language because they want to promote a more positive and humanizing view of autism.
On the other hand, identity-first language embraces autism as an inherent part of a person’s identity. Autism is not seen as something separate from the person. Many autistic individuals advocate against person-first language, which to them feels dehumanizing because it implies that autism is a detachable or secondary trait. We argue that you cannot separate a person from their autism because autism is an intrinsic part of who we are. Autism fundamentally shapes our experiences, perceptions, and interactions with the world. So, an identity first perspective emphasizes that autism is not an appendage; rather it is a core aspect of identity, deserving recognition and respect. Identity-first language also encourages acceptance and pride within the autistic community. It helps autistic individuals to assert their right to be seen and accepted for who they are, without implying that they need to be fixed or that their autism is something to be downplayed. . . .
. . . By choosing identity-first language, we challenge the societal norms that seek to marginalize or pathologize autistic individuals, and we promote a more inclusive and affirming view of autism.
When discussing this topic with my father, he sought to understand the identity-first perspective better by thinking through the alternative. He said, ‘I am a short person, not a person with short. But if I have leprosy, then I am a person with leprosy, not a leprosy person.’ His analogy leads to my next point, which relates to the idea of curing autism. Using person-first language can imply that autism is something to be cured. By contrast, we typically say that people have cancer or have a broken leg because these are conditions we aim to cure or fix. Autism, however, is not something that needs to be fixed; it is a natural part of human diversity that enriches the world. It is a unique flavor in the grand recipe of humanity. Thus, by emphasizing autism as an integral aspect of a person’s identity we can avoid viewing it as a condition that needs a cure; instead, we can recorgnize it as a unique and valuable way of experiencing the world. We can see autism as an “operating system” that comes with remarkable features.
There is another reason to use identity-first language. The positive attributes of people are usually placed before the person, such as ‘a beautiful person’ or ‘a smart person,’ rather than ‘a person with beauty’ or ‘a person with smart.’ Thus, when we place the word autism after the word person, we perpetuate the notion that autism is a negative attribute. Autism is not a negative attribute or a disability; it is a unique configuration of our brains. Autism encompasses a wide range of experiences, strengths, and perspectives that enrich our communities and contribute to the diversity of human thought and creativity. This perspective is central to the neurodiversity movement, which advocates for recognizing and celebrating the diverse ways in which human brains can function. By valuing neurodiversity, we challenge the conventional notions of normalcy and expand our understanding of human potential.
For more information about You, Me, and Autism and Phoebe Jordan, including to schedule media interviews, visit this link.
