Providing resources for individuals with autism
Setting out to write about a topic like Autism Spectrum Disorder requires a certain amount of caution. You can have the best of intentions and still find yourself unintentionally stirring up controversy.
That thought was very much in the back of my mind as I approached researching and writing a blog post for World Autism Awareness Day, which kicks off a whole month of observations for organizations that support individuals on the spectrum.In recent years, there has been a movement among parent groups and advocacy organizations to rebrand the focus of the month from awareness to acceptance. The move is born out of a desire to shift the conversation away from how to prevent autism to how to make life easier and more accessible for autistic people.
Understanding and education are key
“Awareness raises questions, education provides answers,” notes David Geslak, founder of the Autism Workforce in the northwest suburbs of Chicago. “Individuals with autism should be seen for their capabilities, not their disabilities.”
Autism, like a lot of neurological conditions, can be misunderstood. It’s not one condition, but a spectrum disorder that affects different individuals in different ways. Some individuals develop typical capabilities in terms of speech and language – and develop exceptional skills – but struggle with lifelong social and behavioral differences. Others may have challenges in communication, sensory sensitivities, and behavioral issues.
The diagnosis has also increased significantly over time. Before the 1980s, a diagnosis of autism would occur in 1 out of 2,000 children. But in 2020, according to the U.S. Centers for Disease Control, one in every 54 children is affected with autism, with boys more likely to be affected than girls.
Sadly, many young people on the spectrum face a vacuum of help after they age out of school and no longer qualify for a network of supporting programs. According to the U.S. Labor Department statistics, only about 20 percent of people with a disability were employed in 2019. Of those, people with autism were the least likely to be employed, according to a 2021 report by the Office of National Statistics.
The Autism Workforce has collaborated with a local Rotary club to structure a vocational program called Café Voca for individuals with special needs, including three youth with autism. It provides these individuals with job training and an opportunity to develop social skills as they serve coffee to visitors at a local YMCA. Plenty of evidence shows that programs like Café Voca enrich the lives of those with autism.
Chip in to raise awareness
We can also each do our part in smaller ways. Here are several ways you can observe Autism Month.
- Look for programs like Café Voca in your area to support or donate to.
- Browse the websites of various organizations that support individuals with autism, read their mission statements, learn more about the spectrum itself, and find out if there are any activities in your area you could be a part of.
- Finally, strike up a conversation with the parents of a child with autism or an autistic individual and learn their stories, what makes them unique, and what you can do to support them.
How to speak to individuals with differences
Even though a member of my extended family has autism, I cannot pretend to know what it is like to either be on the spectrum or raise someone who is. But as a father of a daughter with differing special needs, I can speak a bit about the importance of how we react to people who are different.
Though my daughter cannot speak back, she has some understanding and certainly knows when people are talking to her. It’s better now that my daughter is older, but when she was younger, my wife used to bristle at the fact that no one would look at my daughter and speak to her as if she was an individual.
Early on in my research for this piece, a wonderful colleague and copyeditor recommended a resource that sets out style guidelines for talking about disabilities. One of the first things you must contend with in writing on the subject is how to refer to a disability and people with it. Under the Autism Spectrum heading, the Disability Language Style Guide offers this pertinent advice which I believe has broader implications: Ask individuals how they prefer to be described.
The best advocates to tell us how to help are the people on the spectrum themselves. That’s why I hope individuals and families affected by autism will share their stories here.
How will you honor Autism Acceptance month?
Additional resources for more information: