Disclaimer: I am in no way trying to be a voice for autistic people because their voice is the only one that is true and valid when it comes to autism- more than scientists and more than their families.
Autism is a fairly new and misunderstood variation of functioning to the general population. Autism is stigmatized and despised by many. Autism is seen as a disease and a burden for families with who have someone with it. Jim Sinclair wrote an essay entitled “Don’t Mourn Us,” in which he writes, “It is not possible to separate the autism from the person. Therefore, when parents say, ‘I wish my child did not have autism,’ what they’re really saying is, ‘I wish the autistic child I have did not exist and I had a different (non-autistic) child instead.’ Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.” For anyone guilty of having said that, 10 year-old me included, it is important to change the way we speak about autism and the way we see our loved ones. Autistic people understand and process, they are sensitive to what we say and absorb the cruel things that we utter about autism and them being autistic and they carry that weight. (And even if what we say isn’t intended to completely erase them from our lives, we cannot often see it because of our misunderstanding which then gets discombobulated with our personal interest to make our lives easier- not theirs.)
Organizations like Autism Speaks constantly promote finding a “cure” for autism. But Autism Speaks also have no members on their board who are autistic to represent a true voice for the community- and this is the problem with most people trying to understand autism. We try to be the voice for people who have a voice by constantly shutting theirs out. Autism Speaks also uses most donations for research to eliminate autism, and in turn eliminate autistics.
We rank autism on a spectrum, from mild to severe and anything in between. Mild autism is better than severe, and severe autism is often times hard for families to cope with and embrace rather than feel extreme shame. As writer Alyssa Hillary says, “High functioning means your needs get ignored. Low functioning means your abilities get ignored.” I will admit, as someone whose little brother is autistic, growing up around psychologists throwing labels and what not made me susceptible to use them when telling people about my brother. I have learned that this lablling is useless and doesn’t quite do anything for understanding autism.
My little brother used to (and still does) get made fun of for his stimming, temper tantrums and his inability to speak. He would get called retarded, stupid, and other terrible names. I would cry for hours, days, and years. I dealt with a lot of bullying through my brother but it was only later that I realized it wasn’t about my pain (it never was and it never will be), the tragedy is the suffering that constantly ensues until this day- that a lot of people don’t understand and will never understand autism. Autism is not the suffering. Many autistic people get bullied for of their calming behaviors (also known as stims). The Blog Autistic HOYA wrote a post called “15 Things You Should Never Say to An Autistic.” One of them address this exact issue, “Can you please not flap/rock/spin/jump in public? It’s embarrassing.” To which they responded, “Flapping, rocking, spinning, jumping, or other stimming (calming behaviors), in the vast majority of cases, hurts neither the person doing it nor anyone else nearby. There’s nothing wrong with stimming, and this statement communicates that the Autistic person should stop acting like themself or stop moving in ways that come naturally and instinctively. It’s very offensive, and for some people, could be very triggering (psychologically and emotionally traumatic).”
I have learned a lot of autism in the past year that I never learned in the 17 years of having an autistic brother through the people constantly trying to explain what it is, and who my brother was. Autism is not a disease. My brother doesn’t have strong verbal communication skills, so I don’t quite know how he understands being autistic and what it means to him. In trying to get a more valid understanding of autism, I began to follow several blogs ran by autistic writers. They speak about how important autism is to them and how it is a huge part of their personality. They also express their discontent with being misunderstood on a daily basis by their family, friends, and people they don’t even know them.
Autistic people aren’t here to teach us love and compassion. Their purpose of existence shouldn’t be based on what we get out of it. This is something else that I have learned through the writers I follow and something that seems to resonate with many autistic people.
The writers that I follow of course cannot speak for all of the autistic people, but they are important in deconstructing our misunderstanding of autism. Autism is different for every person that has it. It is not to be defined by our vague knowledge through research. We need to listen to autistic people and stop speaking for them when it’s not needed. For people who are unable to speak, we need to understand their personality through other ways and reach out rather than assuming what’s best for us is best for them. It took me years to understand this, and it is now I am unpacking all the things I learned from childhood and replacing it with what I learn from autistic people themselves.
I would like to appreciate all the teachers that have worked with my brother countless hours after school. Anne, Lynn, Susan, Maryann. These women have so much compassion for understanding and listening to autistic people. They have shown that with my brother, and for that I am forever grateful. They are people who actively dismantle the harmful autistic stereotypes. They have always been on the side with autistic kids and their best interest is in helping them be understood and develop their own individual voice.
We all need to understand that the differences in autistic personalities are a gift, not a disease or burden.
For those of you who support Autism Speaks, I suggest maybe taking a look and standing with the autism rights movement that encourages autistic people and their caregivers to adopt a positive view of neurodiversity and to take a stance on autism that views it as a different way of functioning rather than a disorder. We can make a difference and understand better. We can reverse the harmful things we’ve been told and create a safer environment for all autistic people. Autism should never have turned into the battle it is today. We don’t need to fight autism, we need to embrace it.
Everyone is important in the movement, and for those of you who aren’t autistic, I ask you to use your privilege so we can change the narrative and set the stage for shedding a positive light on autism. Your voice is important and absolutely necessary to turn the focus to autistic people so they can speak.For my little brother Joey, you shine bright every day of your life.