By Sam Tober
Marginalized groups have always existed in our society, and it’s encouraging to see that movements like #MeToo and Black Lives Matter are being heard. Sadly, there is still a population who rarely gets the attention it deserves — the 1-in-54 Americans who live with autism spectrum disorder. They also deserve inclusion — particularly since many cannot speak for themselves.
So many individuals diagnosed with autism remain at the edge of society. I do not bring up those movements to discredit or compare the importance of one social movement over another, but rather to emphasize that if we can agree every life should be equal and appreciated, we cannot forget about the autism population in the national dialogue on equity and inclusion.
As we’ve seen with these other movements, there’s been a necessary push to understand unique perspectives and experiences, to become empathetic not just sympathetic. For people to truly start caring about autism, it is critical that our society as a whole understands the importance and gravity of this issue at a similar level to those who live with it every day.
According to the CDC, the percentage of children with autism has nearly tripled in the past 20 years, from 1-in-150 to 1-in-54 children. Each is unique with different strengths and challenges, which is why autism is a spectrum disorder and can sometimes be difficult to recognize. About a third of children with autism have an intellectual disability. Almost half actually have IQ scores that fall in the average to above average range, yet nearly 40% are non-verbal. Nearly half of 25-year-olds with autism have never had a paying job, and the societal cost of caring for Americans with autism could be $461 billion by 2025 if we don’t come up with better interventions and support.
We can talk about autism and its effect on society, but to truly understand what it means to deal with it on a daily basis, you have to look at the individual. I’ve seen firsthand the emotional, physical and financial impact my younger brother has had on our family, but also know that I am kinder, more sympathetic and patient because of him.
While autism awareness continues to grow — including Autism Awareness Day each year on April 2 — there is still so much that needs to be done in terms of providing the services this population needs and overall public awareness and sensitivity. The impact this pandemic has had on these families is catastrophic. For so many, in-person learning provides not just the critical supports individuals with special needs require, but the respite these parents need to survive.
In a period of our history that is so focused on social equality and justice for those who have been marginalized, it is so critical that we do not leave any group behind. On an individual level, I think we can all take a lesson from the anti-ractist movement and translate it to autism. Instead of just caring about an issue when you are faced with it, I challenge people to seek ways to truly understand better the lives of those with autism. Whether that be volunteering with children or adults with autism through a local organization like Ascendigo, which provides amazing recreational opportunities in the Roaring Fork Valley, or simply doing what you can to “walk in their shoes” — we all have a duty and the ability to make a difference.
Sam Tober is the older brother to Lucas, a resident of Denver and student at the University of Miami.