We need you

Autism. A word that carries so much weight and so many stories. In some ways, it doesn’t seem appropriate that so many individuals with widely varying needs and personalities can all be medically defined by the same one word. As human beings our brains naturally form stereotypes to keep us safe as a sort of addition to fight or flight. We get nervous around dark alley ways, we tense up when people get too close to our definition of personal space, we see homeless people and imagine the scenarios that have landed them there, we talk about areas that are rich versus poor and safe versus dangerous; and all of theses images in our minds are conjured up by what we have been exposed to that led us to create these stereotypes. How is this related to autism you might ask…. Well, I bet if I told you that my son has autism, your brain would automatically summon an image of what that might look like based on your exposure. The problem with this is that unless you have experienced autism firsthand you are usually limited to what you have seen in the media or read about in books and articles which tends to favor the sensationalized. You may have seen the autistic child being crowned king or queen of the homecoming or shooting a game-winning basket or a savant who has memorized a seemingly impossible amount of facts. We buy into what we want to see, what sells, and that is often the feel-good stories that don’t always portray the whole truth, which leads to the creation of stereotypes that are most often inaccurate and incomplete. These are the conversations I typically have with strangers where I tell them that my son has autism and their response is “I’m so sorry” or “is he high or low functioning” or my favorite, “what is his special talent?” I am here to dispel these beliefs because while some individuals on the autism spectrum do have exceptionally amazing stories just like their neuro-typical counterparts, most of them lead very average lives within the parameters of their diagnoses. In a day and age where we consume endless social media and “reality TV” that most often displays anything other than the average, this word has somehow taken on a negative meaning. People feel that the average life no longer warrants merit because the people have spoken, and what they pay to see, read, and listen to are the stories of celebrities, reality stars and social media icons who warp our concepts of the average person and the average life. In all of this ho-hum, many of us “regular” people feel left behind and insufficient, but as the mother of a child with a pervasive developmental disability I feel it even more so. Our life is not glitz and glamour, it’s not plastic surgeries and endless amount of time in front of screens sharing doctored videos and images of our lives, it is not planning and plotting how we want the world to see us and only sharing that. Autism forces you to live in your authenticity; it will make you humble, empathetic, and limit your ability to control any aspect of your image. You see, my son, because of his autism, is unaffected by the self-centered, image-controlled society that we live in today. He does not strategically plot and plan, he lives his life with a level of authenticity to himself that rarely exists today. I share his stories because it is so important for people to break their stereotypical views, to live their true realities, to share their real stories, and to work for tangible human connections with ALL people. The progression of humanity depends on this, including the survival of representation and inclusion for people like my son. In a day and age where genuine authenticity is shunned; he is even more at risk for bullying and abuse and neglect. His dedication to being 100% himself is stereotyped as weird, scary and different. Due to lack of equal representation to all levels of the autism spectrum, he is even more misunderstood when he doesn’t check the boxes of society’s limited understanding of autism. It is absolutely crucial that I share about Connor because the quality of his life literally depends on it. There will be critics who question this and autistic self-advocates who scream from the mountaintops that we should not share about Connor without his consent and his input, but the reality is that my son has a pervasive communication disorder. Sharing his personal experiences with autism would be extremely difficult for him and I do not feel that it is his job to explain to the world why they should value, accept and include him. That is my job as his mother. When both of my children were born, I promised to always protect them and do anything for them to ensure their quality of life. Sharing about Connor is one of the best ways that I can protect him. I need people to see his face, read his stories, hear his voice and know his struggles so that if someday he is out in my community and faces a difficult situation maybe someone there will recognize him and protect him from a potentially harmful or dangerous scenario. My biggest fear as an autism mother is that I will not outlive my son, that one day he will have to face this cruel and judgmental world without me. I have to do my best to change this while I am here; I have to plan for the worst but always pray for the best. I cannot leave any stone unturned or any avenue unexplored when it comes to ensuring his lifelong well-being. All that I ask of the people following our autism story is that you share it. Start conversations around autism, break down existing stereotypical views, talk about Connor and how his diagnosis impacts him but does not define him, talk about the educational, societal, residential and vocational inequities and the need for more comprehensive budgets and training for supports across the life span. Talk about parents like myself who are exhausting every single option, fighting every single antiquated system, and spending endless time and money to create opportunities where they otherwise do not exist. Teach your children to take the time to learn about those who are “different” from them and break harmful stereotypes of all natures. My son’s life depends on you and your children and how you perceive him just as much as it depends on me fighting for him. He needs allies in the community to speak out for his rights to a quality education, social inclusion, vocational opportunities and access to critical adult supports like public transportation and housing options. There is power in sharing our story, there is power in the written and spoken word and there is even more power in humanity. Please use your power to help individuals like Connor. I can promise you that using the power of your voice to advocate for the autism population is much more rewarding than maintaining society’s current status quo.