April is Autism Awareness Month, providing a time to reflect on autism as a condition which affects the individual with the diagnosis, their family, and the community in which they live. In April 1970, Dr. Bernard Rimland founded Autism Awareness Month. Years later (2007), the United Nations General Assembly designated April 2nd as Autism Awareness Day Autism Awareness Month is a great time to learn more about autism, common misconceptions, and how individuals are impacted by this condition.
Autism is a developmental disability and juvenile-onset condition. Despite some misconceptions, autism is a condition that is experienced across the lifespan and therefore is present in children, adolescents, and adults. Autism spectrum disorder is characterized by a variety of social, communication, behavioral, and developmental deficits that differ in severity and presentation (Kanne & Mazurek, 2011; Leung et al., 2018). This disorder falls within the "spectrum" category, exhibiting substantial variability in characteristics and symptoms among individuals on a continuum ranging from mild to severe (Hyman et al., 2020).
Unlike other developmental disabilities, such as Down syndrome, autism may have more subtle (and harder to recognize) physical traits and characteristics. For some individuals with autism, facial characteristics (e.g., broader upper face, wider eyes; Tan et al., 2020). Behaviorally, some people with autism may visibly display repetitive behaviors, pacing, or hand flapping (Melo et al., 2023). Many individuals diagnosed with autism may experience other co-occurring physical and mental health conditions (Al-Beltagi, 2021). Common co-occurring mental health conditions include the following: depression, anxiety, attention-deficit hyperactivity disorder, obsessive-compulsive disorder, phobias, motor and/or vocal tics (Lai et al., 2019). Some people with autism may have IQs ranging from average to high, while others may experience intellectual delays and deficits (Katusic et al., 2021).
The prevalence of autism in the United States has increased dramatically, with statistics indicating a significant increase in diagnosis in recent decades. The incidence is illustrated differently for children than adults. For example, the Centers for Disease Control and Prevention (2023) indicated an estimated 1 in 36 children is diagnosed with autism spectrum disorder, while recent estimates for adults are presented in approximately 5.5 million adults [2.21%] diagnosed with the condition (Dietz et al., 2020). Boys are four times more likely to be diagnosed with autism than girls (Centers for Disease Control and Prevention, 2023). A number of reasons may contribute to the variance in diagnoses between boys and girls found with this condition. For example, differences in socialization between boys and girls, greater ability for girls to mask autism traits (e.g., through developing strategies to manage and navigate social situations) or “social camouflage”, and the diagnostic tools using males as the baseline are considered to be contributing factors (Hull et al., 2020; Wood-Downie et al., 2021). What we do know is that girls and women, at times, may go unnoticed and live without a formal diagnosis. Sometimes these individuals connect with professionals for other reasons (e.g., depression, anxiety) and receive a belated autism diagnosis.
There are a number of reasons that contribute to the increased rate in diagnoses (Bent et al., 2017). The criterion and categorization of this condition has changed and shifting, in part, making autism is a more commonly diagnosed. Autism is now considered a spectrum condition, hence the term “autism spectrum disorder.” This condition was termed and characterized differently in the past. In sum, the broadened criteria for diagnosis now allows more people to fall under the diagnostic criteria for this condition. Advancements in screening instruments and assessment techniques have facilitated the more precise detection of autism in children during their formative years. Increased survival rates for preterm babies, as well as environmental and other factors also come into play in increasing the number of individuals impacted with this disorder. Finally, greater awareness of autism by families, professionals (e.g., educators, early childhood providers, pediatricians, psychologists, social workers, speech pathologists), and community members at large play a large role in families being able to seek and obtain accurate identification of autism for their children.
Because the challenges and deficits associated with autism continue into adulthood, functioning independently in society can be difficult for many individuals with the condition. Parents, typically, are responsible for providing care for their children from birth. As both the individual with autism and the parental caregiver age, the caregiving demands likely change over time. Ways to support people with autism and their families:
- Learning more about autism and its variation can help decrease misconception and better support people with autism and their families.
- When relevant, ask people with autism and their families what would be helpful. Likewise, provide support when needed. Many families benefit from respite care, support with errands, and a listening ear. Day-to-day life may look very different for each family and between families. However, it is common that families and individuals with autism benefit from friendly support and when asked, may tell you what is helpful.
- Accept that people with autism are different, with strengths, abilities, and needs differing greatly. The more we can create autism awareness, acceptance, and inclusivity-- the better our society will be to include individuals with autism across the lifespan, their families, as well as support professionals working with them.
- Share information and connect families with support, organizations, and services in the community. This can be done at the local, state, national, and international levels for both in-person and virtual opportunities. Autism Speaks and the National Autism Association are two national organizations that provide education, training, and resources.
- Use your voice to educate and advocate for individuals with autism and their families. Our collective efforts can be powerful in making change and bettering the lives of all those impacted by autism.
As the saying goes-- if you’ve met one person with autism, you’ve met one person with autism. Continuing to learn from individuals with autism and their families will enable us to be more aware, to better understand, and be more effective in supporting the individuals and their families impacted by this condition.
References
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Centers for Disease Control and Prevention (2023). Data and statistics on autism spectrum disorder. Author. https://www.cdc.gov/ncbddd/aut...
Dietz, P. M., Rose, C. E., McArthur, D., & Maenner, M. (2020). National and state estimates of adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 50, 4258-4266. https://doi.org/10.1007/s10803...
Hull, L., Petrides, K. V., & Mandy, W. (2020). The female autism phenotype and camouflaging: A narrative review. Review Journal of Autism and Developmental Disorders, 7, 306-317. https://doi.org/10.1007/s40489...
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Katusic, M. Z., Myers, S. M., Weaver, A. L., & Voigt, R. G. (2021). IQ in autism spectrum disorder: A population-based birth cohort study. Pediatrics, 148(6). https://doi.org/10.1542/peds.2020-049899
Lai, M. C., Kassee, C., Besney, R., Bonato, S., Hull, L., Mandy, W., ... & Ameis, S. H. (2019). Prevalence of co-occurring mental health diagnoses in the autism population: A systematic review and meta-analysis. The Lancet Psychiatry, 6(10), 819-829. https://doi.org/10.1016/S2215-...(19)30289-5
Leung, R. C., Pang, E. W., Anagnostou, E., & Taylor, M. J. (2018). Young adults with autism spectrum disorder show early atypical neural activity during emotional face processing. Frontiers in Human Neuroscience, 12, 57. https://doi.org/10.3389/fnhum.2018.00057
Melo, C., Ribeiro, T. P., Prior, C., Gesta, C., Martins, V., Oliveira, G., & Temudo, T. (2023). Motor stereotypies in autism spectrum disorder: Clinical randomized study and classification proposal. Autism, 27(2), 456-471. https://doi.org/10.1177/13623613221105479
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