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13 Dec

“Person with autism” or “autistic person”?

By Lirio S Covey, Ph.D.

With increasing awareness of autism spectrum disorder (ASD), increasing mentions and conversations among various involved sectors have occurred and, with this proliferation, a running controversy about the terminology for autism.

The alternative approaches are referred to as “person-first language” (PFL) or “identity-first language” (IFL).

Person-First Language (PFL) which uses the term “person with autism” carries the meaning that autism is a condition that the person “has”. This would imply that the autism, while significant, is only one of several characteristics or features of the person. Thus, the person with autism could also be described in other ways, such as by appearance, unique talent, or occupation. This terminology has been favored by researchers, scholars, and clinicians, in large part as an indicator of respect and avoidance of a stigmatizing stance. Despite the intention to convey a respectful attitude behind its use, the PFL term has not been favored by many in the autism community itself because of its implication that autism is a debilitating condition that can become stigmatizing and potentially isolating.

Identity-First Language (IFL) which uses the term “autistic person” puts the diagnosis or identity at the forefront of the person’s total nature; that is, a determination that the autism is a central feature of the person from which various abilities, proclivities, or disabilities are likely to flow. In IFL, the term autistic is an indicator, potentially neutral, of the person’s diversity from individuals without autism within the larger human community.

What is the preferred term?

The diagnostic communities which include researchers and scholars, when referring in their writings or talks have tended to use the PFL term “persons with autism”. Activists and autistic individuals themselves, by contrast, have been found to prefer the IPL term “autistic person/individual”. Two recent surveys shed some light.

One, conducted, in March 2022 by Autistic Not Weird (an advocacy organization run by and for autistic people) and received more than 11,000 responses of whom 7,491 were autistic yielded these findings. (1)

  • The large majority, 76%, of autistic respondents indicated a preference for IFL, that is, they want to be referred to as an “autistic person” rather than a “person with autism.”
  • Just under 4% indicated a strong preference for “person with autism.”
  • 15% indicated that either term felt appropriate, and about 5% declined to answer the question.
  • By contrast, only 40.9% of professionals working on autism endorsed the IPL (autistic person) term.

Another study, also published in 2022, conducted with 654 autistic participants from several countries, assessed preferences relating to the Self. The following are rates of responses by the participants. Most frequently endorsed was Autistic Person (79.5%), followed by Neurodivergent Person (70.0%), Autistic (70.0%), Person on the Spectrum (32.4%), and “Person with Autism” (23.9%), and “Aspie” (18%). (2). Note that the two latter terms following the PFL mode are endorsed only at a third or less of the time, whereas the terms that prioritized the condition, i.e., Autistic and Neurodivergent were endorsed more than 70% of the time.

These survey results indicate a marked preponderance of preferences among autistic individuals for the IPL term. Following this, a rule of thumb would seem to be that terminology which emphasizes the individual, such as when describing one person, warrants priority. When referring to the general community, however, such as when referring to a diagnostic group rather than an individual, a convenient and workable rubric might be to use the broadly encompassing PFL term – persons with autism.

A caveat is noted. Mindful that context plays a role in the use of language, there may be group-wise differences among autism communities around the world in what terminology is preferred as determined by the group’s particular culture or social practice. Specifically, certain cultures or nationalities may have their own semantic inclinations when referring to autism; knowing those would be of interest.

1. Autistic Not Weird. Results and Analysis of the Autistic Not Weird 2022 Autism Survey. Autism, March 23, 2022.

2. Connor Tom Keating et a. Autism Research,

Measures of success

20 Jan

Measures of Success for Adults with Autism

Excerpts from an article in, November 17, 2015, by Catherine Lord, formerly professor of psychology at Weill Cornell Medicine and founding director of the Center for Autism and the Developing Brain at New York-Presbyterian Hospital. Currently she is Distinguished Professor in Residence at the School of Medicine at the University of California, Los Angeles.

In a study published in Autism, Dr. Catherine Lord and colleagues tracked scores on the Vineland Adaptive Behavior Scale for 179 people with autism as they aged from 2 to 21 years. The Vineland is a caregiver interview that measures a person’s ability to function day to day. The researchers wanted to see what other factors predicted scores on the Vineland. The study objective was to find better ways to assess the quality of life of young adults on the spectrum.

1. Some aptitudes — such as language comprehension and nonverbal cognition —are associated with good daily living skills and independence in adults with autism, just as they are in people without autism.

2. Young adults who have more limited cognitive abilities use fewer daily living skills at age 21 than they did at 18. Two types of skills, in particular, seem to decrease: personal skills, such as taking a shower, and community skills, such as crossing a street or showing a sense of privacy. The researchers speculated that rather than having experienced a decline in ability to perform those behaviors, these young adults had encountered fewer opportunities and motivation to use those skills causing those skills to appear to decline.

3. The opportunities available to teenagers and young adults more generally (non-autistic young adults), such as college courses, internships, extracurricular activities and sports, may not be accessible, appropriate or appealing to those on the spectrum.

4. The significant influence of early intervention was noted. Adults with autism whose caregivers or parents sought out and participated in early interventions have stronger adaptive skills than those whose parents weren’t as involved. In the study sample, a caregiver’s level of involvement in this way had a stronger effect than which therapy they sought or even the total number of hours of treatment during the preschool years.

Autism and hair

18 Jan

Toward a biologically-based method for diagnosing autism

Read the full article here.

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