Variations on a Theme

Dania Jekel, Executive Director, and Sonia Janks, Contributing Editor
Blog Post

Lee el mensaje de Dania en Español

I’ve been thinking a lot about the ways in which the COVID pandemic has created opposite responses for many on the autism spectrum. For some, loss of routine, changed social rules, and the fear of illness and death has been debilitating and has led to the escalation of mental health issues, isolation, anxiety, and extreme loneliness. But for others with autism, the pandemic has barely impacted their lives, and many have even managed much better. COVID restrictions have reduced or changed social interactions and forced many work, school, and other activities to be done from home, which has alleviated the stress and sensory overload some on the spectrum routinely experienced in the pre-COVID world. Also, some have benefited greatly by accessing newly available online support.

This is just the most recent example proving that it is impossible to make generalizations about individuals on the spectrum. Not only can there be variation, we sometimes see diametrically opposed traits or responses. 

Stereotyping and Its Consequences

While most accept that individuals can have different personality traits which make them unique, there is a general lack of awareness by the outside world that people on the spectrum can also be very different from one another. Many consciously or subconsciously still hold the stereotype of autism as the male, brilliant, unempathetic computer nerd living a life with few social contacts, which is often confirmed by depictions in movies or television. When they meet someone with a different profile, they are confused, or assume this new person can’t possibly be on the spectrum too.

Even long-time professionals, researchers, and members of the autism community who may be familiar with one, select segment of the spectrum may only understand autism variation intellectually. There still may be ways we make false assumptions or form unconscious biases. 

The consequences of deeply embedded assumptions are many: cookie-cutter accommodations, supports, and services that fail some of the people they are meant to serve, missed struggles that go unsupported, and incredible abilities that go unrecognized. Moreover, those who would benefit from understanding remain unsupported because they do not fit the autistic stereotype.

When thinking about the variation of how autism may be expressed, it is helpful to keep the following in mind:

  • An autistic person may be highly competent in certain areas which are usually challenging for those with autism. Just because someone is charismatic or skilled at sales, doesn’t mean they are not on the spectrum.  
  • A person may have select characteristics of autism and those characteristics may be expressed to varying degrees. For example some people with autism do not have sensory differences. But for those on the spectrum who do, some may find a noisy environment mildly distracting and for others, the same noise could cause extreme discomfort.
  • Personality and personal experiences impact the neurological profile. These factors can modify or ameliorate the expression of some traits and amplify others. 
  • Coexisting conditions frequently affect the expression of traits. ADHD, anxiety, depression and other conditions influence how characteristics are expressed.
  • Traits are not static. They may change as a person grows older.
  • Circumstances and the environment play a large role. Time of day, location, energy and interest level, support, comfort level — so many factors can all impact the expression of autism. 

There’s no question: each person with autism is complex, unique, and unlike others on the spectrum.  

Even so, in our society today, there is often an unfortunate commonality of experience for those on the spectrum, regardless of age of diagnosis, which comes from living in a world with people who do not understand or tolerate difference. This experience often includes feeling like an outsider, frustration, being bullied and excluded, and can lead to low self-esteem. The trauma of being marginalized and misunderstood can take a toll.

So how do we discard the internalized stereotypes and truly rid ourselves of unintentional biases? We start with acknowledging and understanding the complexity of autism and coexisting conditions. We recognize when we have fallen back on assumptions and strayed from looking at each person as an individual. Above all, we truly listen and remember the expert on each individual on the spectrum is the person themselves.