AAP Voices Blog

I often find that encounters with parents or other family members of those who are on the autism spectrum help me to think about things in new ways.

Part of my job at UnitedHealthcare is to create educational opportunities for internal and external audiences. In 2018, we collaborated with OptumHealth Education to produce a six-part  webinar series on autism spectrum disorder.

Recently, a participant, who is the mother of an adult son with ASD, pointed out that the prevalence data was old (I used data from the 2014 CDC publication) and suggested that we update it. She also said we should discuss “identity-first language” as an alternative to “person-first language.”

As we mark Autism Awareness Month in April, we should be aware of just how prevalent autism is and how we frame our speech about it.

Let’s talk first about prevalence.

In March 2020, the Centers for Disease Control and Prevention published an update from the Autism and Developmental Disabilities Monitoring Network. These findings are based on data collected in 2016 from 11 areas throughout the U.S. from the special education and health records of 8-year-old children. 

The prevalence of Autism Spectrum Disorder has increased from 1/150 since the first CDC publication in 2007 to 1/54 (18.5 per 1,000). For the first time, the ADDM Network reported no overall difference in the number of black, white, or Asian children identified with ASD. However, there is a later age at diagnosis for African American and Hispanic children. Hispanic and Native American children are still identified less frequently. 

Although, the CDC report notes that children who identify as Black, white, or Asian are reported to be identified equally, that does not address the issue of health equity and access to medical home care, but that is a topic for another blog.  

The CDC recently released a report regarding prevalence of adults (18 and older) in the U.S., from data collected in 2017. This reports states: “An estimated 5,437,988 (2.21%) adults in the US have ASD.” The prevalence is higher in men than women, which is consistent with estimates of ASD in children.  

As part of the CDC’s work on behalf of adults with ASD, the most recent funding cycle for the ADDM network includes support for five sites to follow up on 16-year-old individuals who were identified with ASD by age 8.

Pediatricians should remember to:

• Follow the AAP guidelines for developmental surveillance at all visits.
• Perform standardized developmental screening tests at 9, 18, and 30 months of age.
• Perform ASD screening tests at 18 and 24 months of age.

And now the language issue.

As there are more adults living with ASD, self-advocacy organizations have given more people a voice about many different topics. One of these topics is identity-first language, noting that autism is an inherent part of a person’s identity. Some adults prefer to be called an autistic individual rather than a person with autism. In addition to other information, the Autistic Self-Advocacy Network has a great article on identity-first language.

The concept of person-first language (or people-first language) has been around for some time now. According to Wikipedia, the recommendation to use person-first language dates to about 1960 when Beatrice Wright wrote that the field of semantics "show that language is not merely an instrument for voicing ideas but that it also plays a role in shaping ideas.” 

In the pediatric world, person-first language has been essential for family-centered care. Those of us who have promoted it felt that this use of language respectfully puts the person before the disability, disease, or disorder. It reminds us that these descriptors are simply medical diagnoses.

In the past, in some cases, non-person first language was used pejoratively to describe people with disabilities. So, instead of calling a patient “diabetic,” we would instead say “our patient with diabetes.”  

However, as I have read more, I have learned that some have proposed the term “person-centered language,” which means that we consider prioritizing the preferences of those about whom we may be speaking. What a great idea! Let’s all remember to respect each other’s individuality. 

“When we see patients or speak about them, we should not use language that suggests the lack of something. Emphasize the need for accessibility, not the disability.”

It’s important to emphasize abilities, not limitations. When we see patients or speak about them, we should not use language that suggests the lack of something. Emphasize the need for accessibility, not the disability. Do not use offensive language and avoid language that implies negative stereotypes. Do not portray people with disabilities as inspirational only because of their disability. 

And, if you are ever unsure, ask the person how he or she would like to be described, because preferences vary.

Some helpful resources:

• AAP Autism Initiatives
• CDC Releases First Estimates of the Number of Adults Living with Autism Spectrum Disorder in the United States
• CDC Autism Spectrum Disorder
• Autism and Developmental Disabilities Monitoring Network
• AAP News: Autism rate rises to 1 in 54 as screening improves

*The views expressed in this article are those of the author, and not necessarily those of the American Academy of Pediatrics, UnitedHealthcare, UnitedHealth Group or any of its affiliates.