Autism Identity and the “Lost Generation”: Structural Validation of the Autism Spectrum Identity Scale and Comparison of Diagnosed and Self-Diagnosed Adults on the Autism Spectrum

Abstract

Background:

A population segment of autistic adults are underidentified due, in part, to historic changes in criteria for diagnosing autism and diagnostic biases related to gender, socioeconomic status, and other individual characteristics such as intellectual functioning. Some of these individuals, described as the “lost generation,” may choose to self-diagnose. Although little is known about this population, it is possible that they share similar self-conceptualizations or internalized stigma as their diagnosed counterparts. This study 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.

Methods:

Over 1000 adults diagnosed (n = 893) or self-diagnosed (n = 245) with autism were recruited through organizations serving the autism community to participate in a nationally distributed online survey that included demographic questions and measures for stigma, self-concept, quality of life, and well-being. The diagnosed data set was randomly split with exploratory factor analysis performed on a training data set. Split-half cross-validation was used to predict the factor structure of the holdout data set. Then, the full diagnosed data set structure was used to determine the generalizability of the factor structure to the self-diagnosed data set. The diagnosed and self-diagnosed were also compared for differences in gender, age, employment status, diagnostic term preference, and factors of self-concept (autism identity and self-esteem), stigma, and quality of life.

Results:

Factor analysis of diagnosed participants yielded a four-factor structure, consistent with previous research, with strong split-sample cross-validation and good internal consistency. Factor predictions of the self-diagnosed data set from the diagnosed data set ranged from 0.97 to 1.00 with similar internal consistency. Self-diagnosed participants were more likely to be older, women, or employed and less likely to be students or prefer the term “autism” than those with an autism diagnosis. The groups were remarkably similar in reported stigma, self-esteem, quality of life, and in ASIS factors; both groups reported lower quality of life than the general population.

Conclusions:

The ASIS demonstrated the same internal structure with both the diagnosed and self-diagnosed samples. The profile of self-diagnosed participants matches the profile hypothesized for the “lost generation” and others at risk of being underidentified for autism. Both populations appear to be similarly struggling with employment, stigma, and quality of life. Future research should examine whether self-diagnosed individuals meet criteria for autism or could benefit from interventions, programs, or services serving autism communities.

Lay summary

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 autistic adults in the future?

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.