Abstract
While the Bradley et al. paper brought up an interesting question regarding the relationship between autistic identity and eating disorders, there are concerns with the assumptions and design of this study. This article concludes that autistic identity has no connection to potential eating disorder symptom severity. However, the psychometric tool used, the Social Identity Scale, is missing key aspects of autistic identity found in other tools. In addition, the tool used is not validated in autistic adults.
Lay Abstract
A recent paper by Bradley et al. concluded that there is no relationship between autistic identity and eating disorder symptoms. However, the survey tool used to assess autistic identity of its participants did not include key components needed to arrive at this conclusion. Variations of autistic identity that would need to be considered are manifold. Some of these facets to consider in a survey assessing autistic identity would be whether or not autism is a source of pride, traits are thought to be steadfast or changeable, stigma is felt, and whether they should perform camouflaging behavior. This is important because eating disorder symptoms can be affected by these differences. For example, changeability and autistic pride have been thought to affect eating disorder symptoms. This research can be accomplished through other psychometrically validated surveys such as the Autism Spectrum Identity Scale, which include these features in the survey development. So, the Autism Spectrum Identity Scale or like measure would need to be used before reaching the conclusion of this recent Bradley et al. paper. In addition, the Social Identity Scale used in the Bradley et al. paper has not been validated in an autistic adult sample, which makes it not the ideal survey for the research question as well.
Bradley et al. (2024) investigated the role of autistic identity, sensory processing, and camouflaging on eating disorder (ED) symptoms. After a Bonferroni-adjusted alpha level, only camouflaging significantly correlated with ED symptoms (r = 0.30, p < 0.001). Meanwhile, strong autistic identity was not shown to be a protective factor (r = 0.19, p < 0.013), and the relationship between sensory processing and ED symptoms was also insignificant (r = 0.23, p < 0.013).
While Bradley et al. (2024) correctly identified autistic identity at a theoretical level (feeling of belongingness), the paper disregarded many autism identity constructs reported in literature. These constructs/variations include autism-specific internalized stigma, autistic self-concept, and lower scores on positive difference and changeability (McDonald, 2017).
These are important when thinking about ED symptoms. Autistic people commonly experience marginalization due to their autism-specific internalized stigma. In addition, autistic self-concept measures self-regard, which is also important. Finally, lower scores on positive difference and changeability relate to multiple domains of potential dysfunction including decreased psychological well being, lower self-esteem, and decreased quality of life.
Bradley et al. (2024) use the Social Identity Scale (SIS; Leach et al., 2008), which measures the degree to which an autistic person feels belongingness to the autism community and not variation in what it means to be autistic. The SIS specifically measures autism identity along two dimensions, self-investment, and self-definition composed of the following five domains: solidarity (α = 0.82), satisfaction (α = 0.84), centrality (α = 0.78), individual self-stereotyping (α = 0.86), and in-group homogeneity (α = 0.66). Collectively, the items across the scale measure a person’s sense of alignment and belongingness with the autism community. The scale exhibits good reliability across identities and studies as well as good consistency (α = 0.91).
However, while belongingness is an important aspect of autistic identity, it does not cover the full, or most pertinent, aspects of autistic identity. As mentioned, other measures of autism identity focus on ways that autistic people vary in their conceptualization of autism. For example, autistic people can vary in whether they perceive autism, or their own case of being autistic, as a stigmatizing and challenging disability, or a positive difference such as the linguistic semantic shift of the word neurodivergence. Individuals can vary in whether they feel autistic traits are fixed and unchangeable or malleable. And, they can vary on other aspects of autistic identity, such as whether they, can, or should engage in camouflaging behaviors. These three factors are found in the Autism Spectrum Identity Scale (ASIS)—positive difference (α = 0.88), changeability (α = 0.66), and camouflaging (α = 0.86; McDonald, 2017).
Given overlap in associated poorer well-being and self-concept between positive difference and changeability and ED symptoms, it remains possible that autism identity does relate to ED and maybe an important target for therapeutic approaches as is the case in other marginalized populations. For example, many describe the importance of utilizing appropriate multicultural frameworks with marginalized populations. Also, viewing autism as a positive difference may have buffering effects for social dynamics such as stereotype threat.
Stereotype threat relates to the concept that individuals in a minoritized group may feel pressured by the negative assumptions and expectations that majority group members hold about members of the minoritized group. This pressure exerts a negative impact on performance and well-being and relates across a wide number of minoritized populations to maladaptive coping mechanisms. In contrast to buffering effects of positive autism identity, viewing autism as a stigmatized and challenging disability may lead some autistic people to engage in maladaptive behaviors such as an ED in an effort to fit in and reduce stigmatizing experiences. Furthermore, autistic individuals with an ED may be more susceptible to ED-related peer pressure (organized purging, competitive dieting, desire to fit in, etc.).
In addition, it is critically important to use measures validated with the autism population. Several measures of autism identity are currently validated with the adult autism population such as the ASIS and the Rosenberg Self Esteem scale (RSE; Rosenberg, 1965), which measures autistic self-concept. The RSE has good internal consistency (0.77–0.88) and good test–retest reliability (0.63–0.85). In contrast, the Social Identification Scale (Leach et al., 2008) is not validated with adult autism (Bradley et al., 2024).
Finally, while no specific scale has been created for autism-specific internalized stigma, it is integral to autistic identity and ED research. First, autistic people commonly experience marginalizing experiences. Second, they are also at greater risk of EDs than the general population. As such, autistic people may also experience disparities in ED diagnosis and treatment. And, autistic people may experience “compounded ED risk” similar to others who occupy multiple marginalized social identities. Therefore, the Stigma Scale (SS scale; King et al., 2007) is recommended to capture the variable of stigma before concluding that autistic identity does not predict ED symptoms. The SS scale has strong overall internal consistency overall (α = 0.87) and can be adapted to autistic populations until a validated autism-specific scale is available.
The spillover effect in autistics may be equally damaging. The concept that threshold levels to cope in one area may affect another area of life is universal; however, in autistics this can lead to less “spoons” (i.e. energy units) à la spoon theory. Being autistic can be exhausting across many domains. Therefore, the energy required to maintain healthy dietary habits may be too much for those already beaten down by severe internalized stigma and low self-concept. These stressors can work synergistically and cumulatively to create the perfect storm often found in the cross section between autism and eating disordered comorbidities. This aspect of research has yet to be explored.
Therefore, it is recommended that future research on the intersection of autism identity and EDs take autistic stigma, positive difference, changeability, and self-concept into account before prematurely concluding that autistic identity does not predict ED symptoms. This can be accomplished through reliable and consistent scales such as the ASIS, the RSE, and the SS. It is also recommended to use validated measures for the population being studied when possible.
