Examining autism identity and the “lost generation”

T A McDonald smiling

A new paper* authored by Vanderbilt Kennedy Center member T A McDonald reports on the structural validity of the Autism Spectrum Identity Scale (ASIS) with individuals diagnosed and self-diagnosed with autism and compares the demographic characteristics, stigma, self-concept, and quality of life of these two groups. The study was published in the March 2020 issue of Autism in Adulthood.

McDonald offers a lay summary of the study and outlines how the findings may help adults with autism in the future.

Why was this study done?

Recent research has suggested that some individuals, such as women, older individuals, and people with higher intelligence, may not be given the diagnosis of autism even when they should receive one. These individuals, called the “lost generation,” might also not receive treatments or services that they would be qualified for if they had an autism diagnosis.

Some adults without an autism diagnosis believe they are on the autism spectrum. Little is known about these self-diagnosed individuals. If the self-diagnosed are autistic, it is possible that they are like diagnosed adults in their reports of autism identity, stigma, and quality of life. It is also important to know if measures developed for the autism population are valid for use with the self-diagnosed population. This study reports the structural validity of the Autism Spectrum Identity Scale (ASIS) and examines whether the ASIS is structurally valid for the self-diagnosed population. This study also examines whether these two groups are similar in demographic characteristics (such as age and gender), autism identity, stigma, and quality of life.

What did the researchers do?

I invited over 1000 adults (893 diagnosed adults and 245 self-diagnosed adults) across the United States to take an online survey. The survey measured their responses to questions on the participants’ attitudes and experiences with stigma, self-concept, and quality of life. I validated the structure of the ASIS with the diagnosed and self-diagnosed participants in the study. I compared the responses of the diagnosed with the self-diagnosed participants for self-concept, stigma, and quality of life. I also examined whether self-diagnosed participants were more likely to be unidentified due to being women or an older age, or whether they were more likely to be employed.

What were the results of the study?

The ASIS structure was valid for the self-diagnosed participants. The self-diagnosed participants were more likely to be older, women, or employed than those with a diagnosis. They were less likely to be students or prefer the term “autism.” The groups were very similar in their reports of stigma, self-esteem, quality of life, and autism identity.

The characteristics of the self-diagnosed participants match the suggested profile for the “lost generation” of autistic individuals who were not diagnosed with autism. Both groups appear to struggle with employment, stigma, and quality of life.

What are the potential weaknesses in the study?

This study examined characteristics of the self-diagnosed participants but cannot determine if these individuals have autism. These individuals would need to be assessed and diagnosed by a qualified professional to determine if they have autism. The participants in this study could read and understand a survey and report on their experiences and attitudes.

How will these findings help adults with autism?

This study increases our understanding of self-diagnosed people. Self-diagnosed people are an under-researched group. This group may meet criteria for a diagnosis of autism or be in need of services and programs that address issues with employment, stigma, and quality of life.

*T.A.M. McDonald. Autism in Adulthood. Mar 2020.13-23. http://doi.org/10.1089/aut.2019.0069

Courtney Taylor is director of VKC Communications.

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