This piece is part of a wonderful project by Stuart Duncan of Autism from a Father’s Point of View. Other “awareness” movements rang hollow with me. Frankly, if someone can’t understand or accept me, I’d prefer they stay unaware. What follows is an open letter by Stuart with my own experience added below. If you want a better understanding of autism, I urge you to look for others’ stories as well.
We (The Autism Community) need for you to know what Autism is.
We can only achieve that through Autism Understanding and Acceptance.
Awareness of autism has risen dramatically in the past few years, and awareness is certainly a good place to start. Increased awareness has helped parents get earlier diagnoses for their children, and it has helped secure funding for research. However, it hasn’t done much to change public perception of what autism really is.
This is a call out to the world to understand the people and the disorder.
This is a call out to the world to accept the people and the disorder.
You can not understand or accept the people until you understand and accept the Autism they have.
Autism is a part of who they are.
The media has focused almost entirely on children with autism – but children grow up. In a society where one in 110 children is diagnosed with autism (the latest figures from the Centers for Disease Control), no one can afford to ignore the significance of this disability. People with autism are children, teenagers, adults, men, women, scientists, programmers, engineers, unemployed, in care homes … too many of them continue to be bullied, to be judged, or to just be ignored.
Each person is unique. Each person has their own unique set of strengths and weaknesses just like you or I.
The charities, the organizations, the groups, the parents, the people with Autism themselves… we ask you… no, we need you to know what Autism really is.
Today, we ask for your Autism Understanding and Acceptance.
This is what Autism is to me. What follows are my words.
My autism has no filters. The quiet little restaurant isn’t quiet. Every table, no matter how far away, is my table. I hear each conversation. I smell each plate of food. I know the busboy two tables over had a smoke break within the last hour. I don’t want to be rude, but I can’t understand the waiter for the din of words around me. Then someone makes a joke. I might have caught the humor in another setting, but I don’t and stare into my drink or blurt out some overly literal and revealing reply.
My autism has no filters. My dress has seams in four different places. One of them brushes my skin, and I must acknowledge it before I can continue typing. Clothes are rigorously inspected before purchase for synthetic thread that will render a garment unwearable after the first wash. Patterned fabric with more than two colors makes me uneasy.
My autism has no filters. Only with intense concentration can I focus only on what is in front of me. This gives me balance problems. I can take the stairs up, but I need the elevator to come back down. I am not graceful. I do not have a strong sense of how close objects or people are to me. I bruise myself on door frames, and flinch when you make conversational hand gestures.
My autism has no filters. I am unable to lie to you. I could try, but I would fail…and cry…and likely vomit. I will not catch you in a lie. I’ve tried for decades to learn how, and know now I simply don’t have that skill. It’s cost me dearly, and almost took my life. What I can do is rely on those who have proven they have my interests at heart, and use caution with those whom I love too much to keep out.
This said. I am proud of who I am and what I’ve done. I’m a wife, mother, and grandmother. I think my unique perspective has made me a better person. Being unfiltered has made me unfettered. I’m rarely embarrassed. I have a personal moral code, and I follow it 100% of the time. Therefore, I have almost nothing I’m ashamed of. I promise little, but I deliver on those promises. I may not be socially savvy, but I am intelligent and analytical, with a keen knack for research and learning. I don’t run on auto pilot. I take in each moment for all I can glean from it. Rather than blindly exist, I experience life. This, more than all the accompanying inconveniences, is what autism truly means to me.