Celebrating Autism Awareness and Acceptance Month

Lately, many of us have found ourselves scrolling through social media or hearing headlines that make us pause, especially when they touch on something as close to our hearts as our children. Autism has always attracted a swirl of opinions, but some of the misconceptions gaining traction recently have left many parents feeling confused, anxious, and even guilty. As a community of women, many of us moms raising wonderfully neurodivergent kids or are neurodivergent ourselves, it’s more important than ever to center what we know from research, lived experience, and compassion. This post is here to gently clear the air and offer clarity in the middle of the noise while also seeking to understand neurodiversity.

The origin of the misconception that autism is caused by vaccines traces back to a now-discredited study published in the late 1990s. That study was not only riddled with errors and ethical violations, it was also retracted by the journal that published it, and its author lost his medical license. Since then, dozens of large-scale studies involving millions of children across multiple countries have found no link between vaccines and autism. A 2014 meta-analysis that included data from over 1.2 million children found no association between vaccination and autism diagnoses (Taylor et al., Vaccine, 2014). Similar large-scale studies out of Denmark—some following more than half a million children—have come to the same conclusion: there is no causal link between the MMR vaccine and autism (Madsen et al., NEJM, 2002), (Hviid et al., Annals of Internal Medicine, 2019).

It’s worth pausing here to recognize what this myth has cost us. It has caused unnecessary fear, led to lower vaccination rates (putting vulnerable kids at risk), and, perhaps most painfully, implied that something or someone is to blame for autism. Autism is not a degenerative disease; it is not caused by something in the way an infection is. Autism is a neurotype, which refers to the kind of brain one has. It’s a different way of experiencing and interacting with the world, one that begins in the brain during early development and is shaped by both genetics and environment in complex ways we’re still learning about. Many scientists believe we evolved this way because all our different brains have different roles to play in society that collectively give us an advantage. Traits like intense focus, pattern recognition, or deep curiosity may not have been "disorders" in early human communities, they were assets. The idea is that neurodiverse brains helped groups adapt to different challenges, making society more resilient as a whole (Baron-Cohen, S. 2006) (Lombardo et al., 2019). 

Autism spectrum disorder (ASD) is a neurodevelopmental condition characterized by differences in social communication, sensory processing, and behavioral patterns. And while the name emerged in the early 20th century, it is widely believed it has been around for much longer, typically lumped in with other mental disorders such as schizophrenia or dismissed altogether as personality traits. Autism is often referred to as a spectrum disorder due to a wide range of symptoms and presentations. I tend to describe to my clients the spectrum is less linear and more aligned with the color spectrum of the rainbow. The graphic below created by Matt Lowry, LPP is a great visual representation of the complexity and uniqueness of how symptoms show up in autistic individuals. Diagnostic criteria and labels have changed as we learn more about this neurotype and listen to members of the community. Previously, in the DSM (Diagnostic and Statistical Manual for Mental Disorders) autism fell under the broader category of Pervasive Developmental Disorders with subtypes of Autistic Disorder: Asperger’s Syndrome, Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS), Childhood Disintegrative Disorder and Rett’s Disorder. The current edition, the DSM V-TR took an overhaul on how we think about and diagnose autism, narrowing criteria to 2 major domains (persistent deficits in social communication and social interaction and restricted, repetitive patterns of behavior, interests, or activities) with 3 levels of severity. 

The more we learn about autism through advancements in research and technology and feedback from the community themselves, the better equipped we are to diagnose and treat the whole person and their individual needs. For example, the terminology “low functioning” and “high functioning” that were commonly used in the past are now considered inappropriate as many members of the community prefer “high needs” and “low needs” as general descriptors as “functioning” ebbs and flows daily based on many factors. These descriptors focus on what supports individuals may need to be their best self, highlighting who the individual is rather than what they can do. 

The statement that autism is “on the rise” is also a misconception and lacking context. While the number of diagnosed individuals has risen over the last 20 years, there is much more nuance to this conversation. As our diagnostic criteria widened, so did our tools for screening. Public campaigns like Autism Awareness and Acceptance month, easier access to information and connecting with others via the internet, improvement in recognizing underrepresented groups, and accessing support services and accommodations in school all contribute to more people seeking assessments and official diagnoses. 

As we navigate the world as either a neurodivergent, raising neurodivergent kids, or in relationship with a neurodivergent (or any combo for some of us!), the best defense is a good offense. Find and build your community of understanding and supportive people. Learn information from trusted sources (evidence based and empirically reviewed are key terms when evaluating research). Listen to voices from the community with openness, kindness, and curiosity. Celebrate differences and challenge societal norms that tend to exclude or dehumanize. Identify and work through your emotional roadblocks and biases (we all have them!) And most importantly, lead with love and empathy. 

Citations and resources:

Taylor LE, Swerdfeger AL, Eslick GD. (2014) “Vaccines are not associated with autism: an evidence-based meta-analysis of case-control and cohort studies” Vaccine. 32(29):3623-9.
https://doi.org/10.1016/j.vaccine.2014.04.085

Hviid A et al. (2019) "Measles, Mumps, Rubella Vaccination and Autism: A Nationwide Cohort Study." Annals of Internal Medicine. 170(8):513–520. https://doi.org/10.7326/M18-2101

Baron-Cohen, S. (2006). "Two new theories of autism: hyper-systemising and assortative mating." Archives of Disease in Childhood. 91(1): 2–5. https://doi.org/10.1136/adc.2005.075369

Lombardo, M.V. et al. (2019). "Autism and talent: the cognitive and neural basis of systemizing." Trends in Cognitive Sciences. 23(8): 633–648. https://doi.org/10.1016/j.tics.2019.05.004

www.neurodivergentinsights.com

https://neurolaunch.com/autistic-brain-vs-neurotypical-brain/

https://laconciergepsychologist.com/blog/what-is-the-autism-spectrum/