STATE OF MIND: Autism

April is Autism Acceptance Month! According to the CDC, about 1 in 36 children and an estimated 5.5 million adults in the United States have autism spectrum disorder (ASD). Previously known as Autism Awareness Month, the change to Acceptance was intentional and significant. Awareness is certainly important, but the needs of the autistic community extend further and focusing only on awareness can unintentionally reinforce the falsehood that autism is something to be feared or pitied. Instead, this month is dedicated to fostering acceptance of those with ASD, empowering autistic individuals, highlighting the strengths of the autistic community and encouraging advocacy and allyship from all.

It is important to establish that autistic people can and should be in control of the narratives, policy decisions and advocacy around autism. So, while this article was written by a neurotypical individual, it is intended strictly to support the influential work being driven by the autistic community.

Many people are familiar with autism as a developmental disability that can affect the way someone thinks, moves, communicates, socializes and understands or experiences the world. However, there is still a great deal of uncertainty around how to talk about autism and autistic people. For example, there is often hesitation between using person-first language like ‘person with autism’ or identity-first language like ’autistic person’.

Many autistic individuals prefer identity-first language, as autism is part of their identity rather than something they are carrying around with them. Consider other elements of identity, such as height. It seems logical to use identity-first language such as ‘tall person’ rather than ‘person with much height’. In this way, using ‘autistic’ can help validate that important element of one’s identity. Having said that, not all people have the same preferences. For some, identity-first language has even been used to dehumanize or discriminate. It is most important to refer to individuals in the way they prefer and that allows them to feel authentic and validated.

Some people may have also heard other terms surrounding autism, such as high- or low-functioning, mild or severe autism or Asperger’s Syndrome. As each autistic person is unique, attaching a preconceived classification and its accompanying stereotypes can be harmful. These labels can add unnecessary challenges that make it more difficult to get the specific support autistic individuals need, which vary from person to person and can depend on time and circumstance.

Ultimately, autism exists on a spectrum, as reflected in the term autism spectrum disorder. In other words, autism can affect each autistic individual differently, presenting both unique challenges and strengths. ASD can cause challenges with verbal and non-verbal communication, social interactions, repetitive behaviors or sensory processing, among others. Autism can also be accompanied by numerous strengths relating to intelligence, memory, attention to detail, focus, humor and much more.

Autism is not a disease. Autistic people are born with autism and will be autistic their whole lives. It is just one of many elements of an autistic individual’s identity. There is no definitively known cause of autism, although research suggests that a combination of genetics and environmental influences, such as advanced parent age and pregnancy or birth complications, may raise the risk. Importantly, extensive research has shown no link between vaccines and autism.

For autistic people and their families, resources exist through local and national organizations to provide personalized support. For allies, it is important to be intentional about practicing and encouraging acceptance and respect for autistic people. That means letting go of assumptions and stereotypes, asking questions, listening and taking direction from autistic people themselves as to how best to support and advocate for the autistic community.