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Anila DeMello
Associate ProfessorUniversity of Texas Southwestern
The amount of research devoted to understanding autism is growing rapidly, with more than 50,000 papers on autism published in the last decade alone. To build on that foundation, carefully assess the survey questions, methodology, and results (the “what” or “how” of the study) as well as the demographics (the “who”) of the sample. is essential.Unfortunately, in autism studies, samples were often unbalanced Regarding the number of women and men included.
Discrepancies can be extreme.so Recent meta-analysis Of the more than 1,400 neuroimaging studies in autism, only four recruited female-only samples, compared with 434 studies that recruited male-only samples. In other words, girls and women are largely excluded from autism research. This means that only boys and men with autism provide much of what we already know about autism. This is a bias that fundamentally affects our perception of autism.
unfortunately autistic Because researchers perceive autism to be a predominantly male condition, they often feel it is not necessary to recruit a balanced sample or include females at all, rather than women and girls. Studies that include little autism may further reinforce this stereotype. Furthermore, common diagnostic and research practices may miss autism in girls, resulting in girls This could limit the scope of future autism research, mislead the development of diagnostic tools, and limit access to services for certain people with autism.
I therefore invite autism researchers to take a closer look at the ways we may contribute to sexual bias in autism and deploy some simple steps to counteract it. recommend to.
W.Why is autism research skewed towards boys and men? The problem can begin before the research process. Autistic girls and women (and other autistic people who do not perceive autism as male) bigger challenges It can be diagnosed more than boys and men. less likely to be diagnosed with autism even when they’re exhibiting similar level challengesThis barrier may be due in part to physician and societal prejudices regarding autism in girls and women and phenotypic differences in expressing autistic traits.These problems may push the age of diagnosis significantly higher in girlsalthough the ages at which parents first express concern are similar between men and women. suggests that there is a small pool of female study participants available to: Commonly reported 4:1 ratiorecent epidemiological studies autism sex ratio The male to female ratio is reported to be close to 2:1 or 3:1.
Underdiagnosis of girls and women with autism is not the only factor leading to extreme sexual bias in autism research. Certain aspects of the research process itself also exclude them. Autism participants were more likely to participate in research studies using pre-existing community diagnoses (obtained from clinicians according to the criteria of the Diagnostic and Statistical Manual of Mental Disorders, 4th or 5th Edition) However, researchers often choose to confirm this diagnosis in the laboratory. To do this, researchers may use gold standard tools such as the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview (ADI). The researchers applied a published cut-off her score to these assessments to determine if someone “meeted the diagnostic criteria” for autism, meaning they were eligible to participate in the study. To do. While this process is intended only to confirm the validity of existing self-reported diagnoses, it can have unintended and potentially gender-distorting consequences as to who is ultimately considered eligible. There is also sexuality.
Many studies have identified Gender differences in ADOS Between children and adults, girls and women often score lower (i.e., challenge less) than boys and men, especially in the area of social communication. differences between men and women). In general) in domains such as social communication When public attention, heavily weighted on ADOS. The fact that ADOS was standardized using ADOS predominantly male sample It may only reinforce those differences. As a result, girls and women who meet ADOS criteria may exhibit a specific set of symptoms that are not more broadly representative of all autistic women.
Importantly, the fact that autistic girls and women appear less susceptible to ADOS does not necessarily mean that they experience less difficulty in social communication. , may be self-reported by girls and women with autism. a much higher challenge These areas suggest that more than boys and men experience problems that are not identifiable by standard diagnostic tools.
T.o My colleagues and I, to investigate whether confirmatory diagnostic measures such as ADOS can significantly male bias the eligible study sample. examined retrospectively Effects of applying ADOS cutoffs to a large cohort with a pre-existing community diagnosis of autism. Women and girls, who made up nearly 50% of the initially recruited sample, were disproportionately excluded from study participation after diagnostic confirmation by ADOS. Significant ‘leaks’ in the recruitment-to-study pipeline.
The main cause was differences in cutoff scores in the social communication domain of the test. Girls and women scored lower than their male counterparts (suggesting that they presented less challenge). In fact, ADOS scores were very useful in predicting gender. An increase of 1 standard deviation across ADOS scores nearly doubled the odds of being male.
Surprisingly, similar patterns are noticeable in public (and mostly sampled) databases.we found it Across eight national and international databases of people with autism (counting over 42,000 individuals), reliance on community diagnostics translated into a more balanced sex ratio. We therefore concluded that using ADOS to determine eligibility was associated with excluding more girls and women from study participation.
One of the patches for this “leaky” pipeline might be the use of community diagnostics without any means of verification. Indeed, recent studies suggest concordance between clinical and ADOS-confirmed diagnoses. 90% of cases (However, the samples used in this study were mostly male).
Another solution is to move away from categorical diagnostic designations (e.g., autism vs. non-autism) to a dimensional design that allows greater flexibility in terms of who is included in the study. or moving to gender-neutral eligibility criteria for individuals. For example, certain computerized tasks Successfully differentiated Autistic and non-autistic people show no gender difference.
Ultimately, to get a complete picture of autism in all people with autism, it is important that researchers consider gender differences, including supporting research that focuses exclusively on women and girls with autism. should be encouraged to take it into account. Fortunately, some institutions are already moving in this direction. For example, the US National Institutes of Health should consider: Gender as a biological variable in data collection, reporting, and publication (although strong justification from the literature can be provided for applications proposing studies of only one sex). the call is Simmons Foundation Autism Research Initiative (SFARI).SFARI Fund spectrumHowever, the editorial team operates independently from the Foundation. )
Furthermore, research studies that rely on pre-existing community diagnoses should not be penalized for being less rigorous during the review process. You should try to understand the difference between girls and women. Only through a positive effort to correct the imbalance in autism research can researchers generate the necessary knowledge to best serve this community.
Anila D’Mello is an Assistant Professor and John Hyten Scholar in Autism Research at the Department of Psychiatry and O’Donnell Brain Institute at the University of Texas Southwestern University in Dallas.
