Thursday, April 15, 2021

Representation of the Diverse Autism Community in Research

The movie Music by Sia was just released in February of this year, and people are livid over its offensive portrayal of autism. The film's depiction of autistic traits comes off as mockery rather than an authentic attempt to do justice to the experiences of a large community of autistic people, and that may be in part due to the fact that no autistic actors were cast in the film. On top of that, the film was largely inaccessible to actually autistic individuals. The flashing lights and other sensory aspects of the film's musical numbers can be highly triggering to autistic people with sensory processing issues and epilepsy. On top of all this, the inclusion of restraint scenes after multiple people called for their omission in the final release, has a devastating impact on communities who have lost loved ones to this dangerous practice. While many people have responded to this film by taking the opportunity to educate themselves on the real experiences of autistic people, it is clear that much of the general public holds misconceptions about autism and how it affects those who have it. 

Unfortunately, misunderstandings about autism go beyond the general public to affect those directly involved with autism research and diagnosis too. Autism is diagnosed by certain criteria, two of which describe persistent deficits in social communication and interaction, as well as restricted, repetitive patterns of behavior, interest, or activities. As a developmental disorder, many are diagnosed as children; however, the social and behavioral aspects of these diagnostic criteria can make it difficult to understand the nuances of autism as it presents in complex social environments. 

Conte et al.'s (2020) research of the development of neural responses to faces in infants has profound implications for the early diagnosis of autism. Using cortical source localization methods in infants at risk for Autism Spectrum Disorder (ASD), the researchers identify neural regions implicated in face processing. Specifically, they found larger  P1 and N290 responses to faces than objects in the lingual and middle/posterior fusiform gyri. The Nc component had a significant difference between responding to faces as to objects,  it was influenced by the infant's attentional state, and it was found to be associated with the medial-anterior brain areas when responding to face stimuli. These results make sense since children with autism may process faces differently from neurotypical children. The team's research is critical to our understanding because it elucidates information about autism that does not rely on the subjective observation of social and behavioral traits. It also provides information that in the future may help with early diagnosis. 

This research is particularly powerful in light of ongoing criticisms of autism diagnosis and research for its lack of understanding of the phenotypic differences in presentation for women and gender diverse autistics. Historically, autism research has been focused on boys, specifically cisgender boys (Goldman, 2013). While many modern researchers understand that autism is not truly a male-dominant condition, aspects of this history have affected our understanding of autism today. Women are often under- or misdiagnosed before receiving a correct autism diagnosis because the criteria do not account for recent understandings of the differences in presentation across sex and gender. Goldman (2013) explains that "the potential effect of gendered social environment on the expression of symptoms may be quite different for a boy and a girl with autism, to the point where, despite the same social deficit, a girl may be perceived as shy and a boy as unresponsive." Other researchers have explained that autistic females may be better at camouflaging or "masking" their social difficulties, which could arise because of sex, gender, and/or socialization differences (Tillmann et al., 2020). This situation presents a sort of Catch-22 wherein more research into autistic women is needed to fully understand their experiences so that we can more accurately diagnose and help other autistic women. At the same time, more autistic women are needed to participate in samples as a part of such research (Tillmann et al., 2020), and the autistic women available for that sample whose presentation does not exactly follow our current understandings of autism may be difficult to achieve precisely because we lack the tools to diagnose them. 

While calls for further research into the so-called "female presentation of autism" are not profoundly new, recent research into the larger category of gender diversity among autistics has further emphasized the need to update our research and clinical conceptions of autism.  Warrier et al. (2020) explain that autistic people show greater diversity in gender and sexual orientation than the general population. Similarly, transgender and gender-diverse individuals are more likely to be autistic than cisgender people. The high prevalence of gender diversity among autistics suggests that there may be even more variability in terms of social and behavioral presentation of autistic traits. Gender diverse autistics need to be more deliberately included in research in order to fully represent the autistic community and our scientific understanding of it. At the same time, clinicians should work to understand presentations of autism that go beyond the typical cisgender male stereotypes so that people can receive the right diagnosis. 

Overall, the diversity of the autism community is not fully represented in research samples aimed at studying autism (Lai et al., 2015). In order to improve this, we need to recruit diverse participants, particularly gender diverse autistics, in our research studies and assist clinicians in diagnosing different presentations of autism. This is important, not only to our understanding of autism but also because a more robust understanding of the diversity among autistics, and a better capability to diagnose with this diversity in mind, will help more individuals receive the diagnoses and support that they need. Autistic people who have yet to receive the correct diagnosis may feel lost or as though something is wrong with them, and they may not have access to the support they need as a result. The significance of this research stands to help the autistic community by empowering more autistics with access to the supports they need and deserve. 


References:

Conte S, Richards JE, Guy MW, Xie W, Roberts JE. Face-sensitive brain responses in the first year of life. Neuroimage. 2020 May;211:116602. DOI:10.1016/j.neuroimage.2020.116602

Goldman S. (2013). Opinion: Sex, Gender and the Diagnosis of Autism - A Biosocial View of the Male Preponderance. Research in autism spectrum disorders, 7(6), 675–679. https://doi.org/10.1016/j.rasd.2013.02.006

Lai MC, Lombardo MV, Auyeung B, Chakrabarti B, Baron-Cohen S. Sex/gender differences and autism: setting the scene for future research. J Am Acad Child Adolesc Psychiatry. 2015 Jan;54(1):11-24. doi: 10.1016/j.jaac.2014.10.003. Epub 2014 Oct 16. PMID: 25524786;PMCID: PMC4284309.

J., Ashwood, K., Absoud, M. et al. Evaluating Sex and Age Differences in ADI-R and ADOS Scores in a Large European Multi-site Sample of Individuals with Autism Spectrum Disorder. J Autism Dev Disord 48, 2490–2505 (2018). https://doi.org/10.1007/s10803-018-3510-4

Warrier V, Greenberg DM, Weir E, Buckingham C, Smith P, Lai MC, Allison C, Baron-Cohen S. Elevated rates of autism, other neurodevelopmental and psychiatric diagnoses, and autistic traits in transgender and gender-diverse individuals. Nat Commun. 2020 Aug 7;11(1):3959. doi: 10.1038/s41467-020-17794-1. PMID: 32770077; PMCID:PMC7415151.

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