Autism Awareness Day is About More Than Awareness

Today is World Autism Awareness Day, an international observance dedicated to raising awareness and support for people with autism. However, this day encompasses more than just spreading awareness. It is about acceptance and inclusion today and every day and embracing the differences and seeing value in the contributions made by people with autism. It is also a reminder that there is much to learn about autism, including how genetics can help us understand – not define – individuals with autism. 

About Autism

At its root, autism is a difference in how an individual’s brain works and how it shapes the way they interact with the world around them. People with autism are neurodivergent, which is the word used to describe brains that function, learn and process information differently from what is considered typical. Someone with autism has difficulties with social communication as well as restrictive and repetitive behaviors, interests or activities. These can affect interaction with others and the environment around them, yet autism looks and feels different for everyone.  

Within the autism community, there are differences in how individuals prefer to be acknowledged. While some people prefer person first language, such as “an individual with autism”, others prefer the term “autistic individuals” as being autistic is an integral part of their identity. Acknowledging and validating the different lived experiences of autistic people is crucial to fostering an inclusive, accepting environment.   

In addition, autism has historically been diagnosed more often in boys than in girls, with ratios often cited around 4 to 1. However, current research suggests this gap is not as large as previously thought. Girls are often underdiagnosed or diagnosed later in life because their traits can present differently or are less easily recognized by traditional diagnostic criteria. Being mindful of the variances in how autism presents is crucial for an early, equitable diagnosis.  

Autism and Genetics

We know that an individual’s genes contribute significantly to autism. Trillions of cells make up our bodies and within each cell, the genetic material contains instructions (genes) for how our bodies grow, develop, and function properly. Some genetic changes (variants) are harmless and contribute to our genetic diversity, but others can impact development and health. 
 
The link between genetic variants and autism is complex. Because the disorder is so complex and no two people with autism are exactly alike, there are probably many causes for autism rather than a single cause. For example, having a sibling with autism makes it more likely that an individual will also have autism. In addition, certain genetic or chromosomal conditions may make it more likely that an individual will have autism. However, autism is not linked to one specific gene; instead, many different genes, rare variants, and chromosomal changes are connected to autism. Combinations of these variants, along with other unknown factors, may contribute to the likelihood or expression of autism. Every individual’s autism journey is unique, and their genetic makeup represents just one part of their story.  

Understanding an Autism Diagnosis and the Role of Genetic Testing

An autism diagnosis is based on the presence of specific clinical features, often diagnosed by a developmental pediatrician, neurologist, and/or psychologist. For many individuals, an autism diagnosis can help explain differences, validate lived experiences, and open the door to appropriate supportive services and accommodations. A diagnosis can promote access to educational resources, workplace supports, and community services that foster inclusion and improve quality of life.  
 
Because autism has a strong genetic component, some individuals and families take the next step and consider genetic testing to learn more about what may be contributing to an autism diagnosis. Genetic testing is not used to diagnose autism or confirm an autism diagnosis.  Rather, genetic testing may identify an underlying genetic variant that helps us better understand the autism diagnosis.  The results of genetic testing can be used to guide medical care and health monitoring, provide information about what to expect, connect families to support and advocacy groups, inform future family planning through genetic counseling, and, in some cases, offer eligibility for research studies, if families are interested. 

Beyond Awareness

World Autism Awareness Day highlights the importance of recognizing these differences, improving understanding and fostering a more inclusive society where all individuals on the autism spectrum have the opportunity to thrive. Improving inclusivity is essential for their participation in society, equal opportunity and improved quality of life; it involves understanding and accepting their unique strengths and differences as well as advocating for equal education, employment and community involvement. By embracing neurodiversity and creating inclusive communities, we can help autistic individuals reach their full potential and contribute to society in meaningful ways, which is to everyone’s benefit! 

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