Stage 4 Autism

Dawson, 2011

I know, there isn’t such thing as stage 4 autism, but that is what I call it when I try and describe Dawson’s situation. I feel when I say Dawson has stage 4 autism, it helps whoever I am talking to about him, understand just how profoundly autistic he really is. It is no fault of the person I am speaking with, when they say things like, “Does he play a musical instrument really well?”Or “I bet he is really good at math!” And my favorite, “Does he know all the baseball stats of players?” I will laugh and say he can’t do any of those things, but hot damn, he can out whistle anyone! People also often tell me how their brother, uncle or nephew has autism and do amazing things like participate in sports, play in the band, or maybe even attend college with some help. I am so happy when I hear stories of success about people living with autism. It shows how early diagnosis, therapy, a supportive school, and a loving family can make a significant impact on a child’s future that once may have seemed bleak. Those people have what I call stage 1 or 2 autism. Yes, they still have challenges in their everyday life and may always need help and guidance with specific tasks that may seem easy to others. They can go on to form lasting friendships, hold down a job, and maybe even get married someday. But that will never be true for Dawson because he has stage 4 autism. He will need lifelong care and will never live on his own. He can’t speak, so someone will always have to be his voice and make sure he will never be mistreated. He needs help with bathing, brushing his teeth, shaving his face, and getting dressed every single day. He doesn’t know how to blow his nose, make his own food, or even wipe after using the restroom. Someone will always have to do those things for him the rest of his life because that is what living with stage 4 autism is like. Sometimes it feels like we are swimming in a giant ocean with a tiny life raft to get us through the storms that constantly seem to come and go. We are thankful when the waters are calm, but we know another storm is just around the corner that we always have to be prepared for. We have no idea what is ahead for Dawson physically, or what we will do once he has to leave high school at twenty-one. Those storms are brewing and will eventually hit us. Our tiny life raft has managed to keep us afloat even when I felt as if I could not hang on for one more minute. But for now, the waters of stage 4 autism are calm, and I will continue to hold on tight for Dawson as long as it takes, and anywhere it may take us.

Sarah Swindell's memoir, Rounding Home, is now available here! http://bit.ly/RoundingHome