I will never forget the heart-breaking story I had heard from a patient’s mother about her experience in the ER. Autistic children can struggle with expressing and regulating their emotions. My patient had been having a few particularly rough days that included a lot of screaming, meltdowns, and self harm. As a last resort, his mother had taken him to the ER to seek help as she had been instructed to do if his symptoms worsened outside of office hours. As the mother and her son sat in the ER both wearing Autism Awareness shirts for World Autism Awareness day, the mother described pleading with the ER doctor for support so that her son could stop hurting himself and his family. After several hours of waiting, they were told that there was nothing they could do, their son was not going to change or improve, and they should just take him home. At our next urgently scheduled visit, the patient’s mother painfully disclosed this story to me and cried in my office while her son sat off to the side, unsure of how to respond to his mother’s distress.
As I often say to my patients and their families, imagine being in a foreign country where you do not speak the language and others do not speak your language. This is how most autistic children and adults describe feeling - living in a world where they need to put so much effort into engaging with others based on what society considers to be “normal”. They spend their entire lives masking and feeling pressured to use only the neurotypical language of the greater society. What if we all spent some time trying to understand the neurodivergent language of autistic patients as well?
It is incredibly difficult to see your loved ones in pain and to feel completely helpless to help that pain go away. For the family of an autistic child, this pain is multiplied when a child cannot communicate their own needs to others. In this situation, I would imagine the ER staff felt just as helpless not knowing how to help a family that is struggling. Family members need to be the autistic patient’s voice, their champion, their best advocate to seek support. This is true not only for children but also the many autistic adults in the world who seek to thrive in a world that does not understand them.
15 years ago, the United Nations sanctioned April 2nd as World Autism Awareness Day to raise awareness about people with Autism throughout the world. Today, the prevalence of Autism continues to increase as 1 in every 44 children in the US are diagnosed with Autism. World Autism Awareness Day is not only about educating the world about the statistics of Autism, but also encouraging the world to imagine speaking the language of Autism, if only for one day. So today, please share this message and reach out to support and better understand the neurodivergent loved ones in your life. Let’s have at least one day a year where we celebrate neurodivergence and all of the amazing diversity and alternative viewpoints it brings to our world.
