When the nonprofit advocacy group Autism Society launched the first-ever National Autism Awareness Month in 1970, the idea was to help people better understand this neurological variation that affects approximately 1 percent of the world’s population. Today, that mission remains as relevant as ever, particularly with the new understanding brought about by modern research and cultural shifts.
Want a more in-depth perspective? Here are some of the major ways our cultural awareness of autism spectrum disorder is changing:
Autism advocacy now has its most important participants—those with the condition themselves.
In the past, autism advocacy was done by therapists, neurologists, sociologists, or simply loved ones of people with autism. But those in the autism community are now part of the conversation.
As the Autism Society observes, the dramatic increase in autism awareness comes from the collaboration of organizations to provide more support and service, change policies, and extend education. “Neurodiversity and inclusion is a national topic that the Autism Society advocates for in employment, housing, policy, education, safety, and more, at the local, state, and national levels,” explains Kristyn Roth, chief marketing officer with the organization.
In recent years, some autism advocacy groups, such as Autism Speaks, have faced criticism for not including these important voices. That has now changed. “People with autism are on our board, on our staff, and in our community of volunteers and supporters, and we always welcome a dialogue to ensure the best possible world for everyone on the spectrum,” says Lisa Goring, strategic initiatives and innovation officer at Autism Speaks.
People with autism lead normal and often successful lives.
Classified as a developmental disability, autism manifests itself through certain behaviors that affect a person’s social and communication skills. People with autism are often referred to as being on a spectrum, as it is a condition that can affect people in different ways and to different degrees. Many times, autistic people will have learning methods or problem-solving skills that aren’t standard, and they will frequently have a strong understanding of or interest in specific areas of knowledge. Some people on the spectrum will need lifelong care whereas others can be completely independent.
“Autism spectrum disorder is just that: a spectrum,” Roth says. “Individuals with autism have a wide range of abilities, strengths and challenges, and each person is unique, just like neurotypical people. It is harmful to assume that all autistic individuals have the same characteristics and needs because it promotes stereotypes and doesn’t contribute to the fact that a wide range of supports and services are needed.”
Karen Adams-Gilchrist, the president and CEO of Providence Center, an Anne Arundel County nonprofit organization that empowers people with disabilities to lead fulfilling lives, explains that the people her team works with have many abilities. “They face the same challenges that all people face who are seen as different,” she says. “No matter how far society has come, there is always a contingent of people in society who will not see people for who they are, will judge their abilities, will not be willing to understand the need for accommodations, will be fearful of the unknown, and so on. So, they must prove themselves.”
Not everyone’s experience with autism is the same.
Is it “people with autism” or “autistic people”? Both terms are used, and either might be the preferred term depending on whom you ask. Some prefer person-first language, as this does not characterize an individual by their condition or disability. However, as the Autistic Self-Advocacy Network explains, many in the autistic community embrace autism as part of their identity, perceiving “autistic” as acceptable just as “Jewish” or “African American” are acceptable.
Autism Speaks uses both terms in its communications out of respect for the varying opinion. “Earlier this year, we polled our community about this and heard that there are many different perspectives and preferences around this language,” Goring says. “What’s most important is to respect individual preferences and use the language that each person prefers.”
This preference is one of many ways that perspectives and opinions within the autism community vary based on the individual’s own experience. As another example, some autistic people might want assistance where appropriate, whereas others want to overcome challenges on their own.
“Respect for everyone’s unique strengths and challenges, empathy, and an open mind are so important to creating a more inclusive world for everyone on the spectrum,” Goring says.
Special accommodations can be, and frequently are, made for people with autism.
It’s not uncommon to see certain attractions, whether it’s a movie theater or an amusement park, advertise a special day or time that will be “sensory friendly.” While these accommodations were nearly unheard of in decades past, more organizations are becoming aware that stimuli like bright lights, large crowds, and loud noises can be overwhelming or disruptive for people on the autism spectrum, particularly children. Sensory-friendly times cultivate an atmosphere that is more comfortable for those who are sensitive.
Take care when discussing topics like causes and cures.
“While no single specific cause of autism is known, current research links autism to biological or neurological differences in the brain,” Roth says. “The characteristic behaviors of ASD may or may not be apparent in infancy—18 to 24 months—but usually become obvious during early childhood—24 months to 6 years.”
While there is no known cause, experts agree that autism is not caused by vaccines despite a popular misconception. As Autism Speaks explains, some families saw a correspondence between a child’s vaccination and an autism diagnosis, but research does not support this assumption.
Advocacy has also transitioned away from the idea of finding a cure for autism; instead, people with autism and their loved ones frequently want to see medical advancements that will better their quality of life and help any conditions associated with autism, such as seizures, anxiety, sleep disorders, or digestive issues.
“Autism is not a disease,” Goring states. “Research has shown that there is no single ‘autism’ and there is no single ‘cure.’”