Numbers tell us that 1 in 54 people in the world have autism, a rate that has steadily grown over the past 20 years due to increased awareness and rates of diagnosis¹. As a mother of a child with autism, the facts about autism have always been readily available to me. I’ve had discussions with people about the statistics, the signs to look for, and the steps to follow. But it’s harder to talk about what lies beneath: the fear. The worry. The pain. The uncertainty. The bias. I have a black, autistic son in a world that currently hates and targets black men. In a world that murders black men with mental health issues because they can’t understand that they have to stop when told to. I am raising an autistic son in a world that, by design, marks differences as bad. Differences. My child’s very existence is different. Yes, it is daunting. How can we ensure that people with autism have a place in this world? Let’s talk about it.
Change the Conversation
I started in a new department at work this year. When having a “getting to know you” conversation with my new supervisor, she asked if I have children. I proudly told her that I have a son. “Is he in school?” I answered that indeed he was, and in a wonderful new program for children with autism. There was a brief silence, and then comments of pity from her, followed by “I don’t know how you do it, Anesia. Autism is a terrible disease.” I had to look my supervisor of only a week in the eyes and tell her that no, autism is not a disease, and it certainly is not terrible. And while it did not feel good to put her on the spot, it felt great to teach her something.
This idea that autism is a curse is one shared by far too many. By classification, autism is a disability. More specifically, a neurological developmental disability. But having a child with autism is not a death sentence, nor is it anything to be ashamed of. We have to stop treating autistic people with pity, and change the way we view them. If we treat what we call “normal” people with respect, are people with autism also not deserving? Changing how we perceive children with autism is key to making this world better for them. No more “he/she can’t do it.” More “he/she will do it in their own way, at their own pace.” Less judgmental stares when these kids are out in public and not following the script that you’ve created in your mind as to how kids should act and behave. The first year after learning my son had autism was the hardest. I avoided people, avoided places. I’d tell my kid to be quiet when we were out in public and he would make strange noises, because I hated the stares. The whispers. But now? I embrace my child’s differences more than ever. I love telling people that my amazing son has come so far from where he was, that he’s different and that makes him unique. So how can you be part of the positive change? Acceptance. Tolerance. Equality. All of these things are human rights, for all humans. Not just the ones that do not have different minds.
We love asking kids what they want to be when they grow up. It’s always fun to hear kindergartners make their grandiose plans for their lives 20-plus years from now. For children with autism, those future plans are not nourished quite as much. The programs designed to help them focus more on the now. We often forget that autistic children will grow to be autistic adults; adults that need a way to make a living, skills to interact with others in the world, and a sense of purpose to their lives.
I have always believed that there is a great need for more programs for adults with autism. While I am extremely grateful that there are so many resources readily available to help my son, I can’t help but worry about the lack of support he will have as a man. There are some programs out there designed to help adults with autism, but when compared to the support there is for children, the difference is staggering. If we can maintain programs that help non-autistic adults find housing, develop skills, and even overcome addiction issues, why can’t we do the same thing for adults on the spectrum? The answer to that is that we can, if we start to include autistic adults in our idea of who should be treated equally.
Be an Advocate
With the rate of diagnosis for autism steadily increasing, we all probably at least know someone with autism or someone who has an autistic person in their family. And with that comes what we witness inevitably: how differently these people are treated. How autistic people, whether children or adults, get made fun of, looked down upon, or simply just left out. On the more extreme end: killed for no reason other than for the fact that they are different (RIP Elijah McClain).
You may think that there is nothing you can do to change these things, but there is plenty. Stand up. Say something. Tell the bully at school to stop making fun of your friend with autism. Tell the lady at the grocery store that the man acting strange has autism and she shouldn’t point and whisper to her friend about it. CALL PEOPLE OUT. And while you’re at it, protect people with autism. Intervening when someone on the spectrum is in a dangerous situation just might save that person’s life. I am my son’s advocate. Anyone can be an advocate for someone with autism. Courage and love is all that it takes.
Different, Not Less
What would the world be like if every person had the same mind? Probably not a world worth living in. I believe that our fellow humans with autism are the gems that make life colorful. With their super abilities, sensitivity to emotions and senses, and absolutely amazing talents, they make this world much less dull. Different, in every sense of the word. But not less human than the rest of us. Not less deserving of love. Not less worthy of our respect and compassion. I want to make this world a place where my son may have any number of worries at any given time, but being treated unfairly because he has autism is not one of them. Equality. We can all make it happen.
The above excerpt was contributed by Anesia C.
#TheCoalitionSpeaks: A Series on Inequality
This series aims to shed light on the experiences of those who carry the burden of injustice on their backs every day. The world is not fair for anyone, but it is even more unnecessarily unfair for people who are different. We need to put pressure on our culture to break the stigma, speaking out to create awareness and facilitate change.
¹Data & Statistics on Autism Spectrum Disorder, Center for Disease Control. Accessed November 1, 2020 from https://www.cdc.gov/ncbddd/autism/data.html