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Issues with Research for Autism

Autism is a complex neurodevelopmental disorder that affects an estimated 1 in 54 children in the United States alone. Despite the high prevalence of autism, researchers have struggled to fully understand the underlying causes of the disorder and develop effective treatments. This is due in part to a number of issues that have plagued autism research, including difficulties in accurately diagnosing the disorder, the heterogeneity of symptoms, and the lack of diversity in study populations. Additionally, controversies surrounding the ethics of certain research practices, such as the use of animals in experiments and the dissemination of inaccurate or misleading information, have further complicated the landscape of autism research. This article will explore some of the key issues with research for autism and their implications for those affected by the disorder.

Issues with Research

There are several issues with research in autism, ranging from challenges in defining the disorder to difficulties in obtaining accurate and representative samples. Here are some of the main issues with research in autism, along with relevant sources:

  • Heterogeneity: Autism is a highly heterogeneous disorder, with a wide range of symptoms and severity levels. This heterogeneity makes it challenging to identify consistent patterns and characteristics across different individuals with autism. As a result, it can be difficult to draw generalizable conclusions from research on autism.

  • Limited representation of diverse populations: Research on autism has often focused on individuals from Western, high-income countries, leading to a lack of representation of diverse populations. This has limited the generalizability of findings to individuals from other backgrounds and cultures.

  • Challenges in diagnosis and assessment: The diagnosis of autism is currently based on behavioral observations and subjective reports, which can lead to inconsistencies and inaccuracies in diagnosis. Additionally, many standardized assessments are not well-suited to individuals with autism, as they may not account for the unique ways in which individuals with autism process and respond to information.

  • Lack of longitudinal studies: There is a need for more longitudinal studies that track individuals with autism over time. This would provide a more comprehensive understanding of the developmental trajectories of autism and how it changes over the lifespan.

  • Lack of research on effective treatments: While there are many interventions and treatments for autism, there is a lack of rigorous research evaluating their effectiveness. This makes it difficult for individuals with autism and their families to make informed decisions about treatment options.

  • Gender: Another important factor that can affect research in autism is gender. Autism is more commonly diagnosed in males than females, which can lead to a male bias in research samples. This may result in findings that are not generalizable to females with autism or that fail to identify important differences between males and females with autism.

Additionally, research on autism and gender identity is an emerging area that has received increasing attention in recent years. Some individuals with autism also identify as transgender or nonbinary, and there is a need for more research to understand the intersection of autism and gender identity.


  • Dean, M., Harwood, R., & Kasari, C. (2017). The art of camouflage: Gender differences in the social behaviors of girls and boys with autism spectrum disorder. Autism, 21(6), 678-689. doi: 10.1177/1362361316669087

  • Lai, M. C., Lombardo, M. V., & Baron-Cohen, S. (2014). Autism. The Lancet, 383(9920), 896-910. doi: 10.1016/S0140-6736(13)61539-1

  • Lord, C., Risi, S., DiLavore, P. S., Shulman, C., Thurm, A., & Pickles, A. (2006). Autism from 2 to 9 years of age. Archives of General Psychiatry, 63(6), 694-701. doi: 10.1001/archpsyc.63.6.694

  • Nicolaidis, C., Raymaker, D. M., Ashkenazy, E., McDonald, K. E., Dern, S., Baggs, A. E., ... & Kapp, S. K. (2015). “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Autism, 19(7), 824-831. doi: 10.1177/1362361315584898

  • Shattuck, P. T., Roux, A. M., Hudson, L. E., Taylor, J. L., Maenner, M. J., & Trani, J. F. (2012). Services for adults with an autism spectrum disorder. Canadian Journal of Psychiatry, 57(5), 284-291. doi: 10.1177/070674371205700506

  • Strang, J. F., Kenworthy, L., Dominska, A., Sokoloff, J., Kenealy, L. E., Berl, M., ... & Wallace, G. L. (2018). Increased gender variance in autism spectrum disorders and attention deficit hyperactivity disorder. Archives of Sexual Behavior, 47(5), 1301-1313. doi: 10.1007/s10508-017-1141-y

  • Wong, C., Odom, S. L., Hume, K. A., Cox, A. W., Fettig, A., Kucharczyk, S., ... & Schultz, T. R. (2015). Evidence-based practices for children, youth, and young adults with autism spectrum disorder. Chapel Hill: The University of North Carolina, Frank Porter Graham Child Development Institute, Autism Evidence-Based Practice Review Group.


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