Autism Awareness month is here, and today is also World Autism Awareness Day. As a mom to a non-verbal son with autism, I wanted to take time and share what autism really means to me. I had a lot of different plans for this post, but then I realized that autism awareness comes down to the six elements I describe below.
A = ACCEPTANCE
U = UNDERSTANDING
T = TIME
I = INDIVIDUALS
S = STIMS
M = MOMENTS
ACCEPTANCE is the next step beyond awareness. It means not just saying something like "1 in every 68 kids has autism," but saying instead, "Many kids have autism. We need to respect those children's differences, support their challenges, and celebrate their strengths."
(My 7-year-old boy, Liam, who we accept and celebrate daily.)
UNDERSTANDING means listening to what people with autism — both adults and kids — have to say in order to better understand how they experience the world. It means reading their books, blogs, and other writings. It means thinking about how they see the world, and valuing their perspectives (especially when it comes to conventional wisdom about how to teach kids with autism). It means understanding that behavior is communication, even if the behavior doesn't always make sense to us.
(Liam "shopping" at the children's museum, in his own way.)
TIME means understanding that kids with autism are moving through life at their own pace. They may not be hitting milestones at the same times as their peers, but they're doing amazing things and developing skills every day. It's important to respect the pace of their development, so they can become their best selves, not just pale shadows of other kids their age.
(Liam and his brother, Elliot, playing Legos; sit-down play like this is a skill that's taken Liam seven years to learn to enjoy.)
INDIVIDUALS means that each one of our kids is unique. It's reductionist to make claims about "all people with autism" because every person with autism is different. Like all humans, they have distinctive personalities, interests, hopes, and abilities. Seeing them as fully-formed individuals — as people, as fellow humans — is crucial to increasing autism acceptance.
(Liam and Elliot hugging and watching Elmo on the iTouch.)
STIMS means accepting the repetitive, self-stimulatory behavior (spinning, bouncing, shredding paper, fidgeting, etc.) so many people with autism — my son included — engage in habitually. For a long time, parents and professionals have tried to stop stimming from happening, but stimming has a function for a person with autism. Stims can be calming, reduce anxiety, let out stress, or just bring pleasure. (Most of us have similar reflexive habits, too. I bite my lip when I'm thinking or nervous; Liam flaps his hands when he's excited.) But as Jess at Diary of a Mom says, autism acceptance means we have to "respect the stim."
(Liam stimming as he piles wood chips onto a playground slide, happy as can be.)
MOMENTS means living in the moment — not living too far in the past and not thinking too far ahead. Kids with autism are doing all sorts of amazing things now, and paying attention to each moment can bring joy, connection, and community.
(Liam and his brother sledding recently, a moment filled with happiness, laughter, and fun.)
Although April is the month when everyone's lighting it up blue and promoting autism awareness, keeping these six elements in mind throughout the year is what autism awareness and acceptance really signifies!
Jamie Pacton lives near Lake Michigan where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons, Liam (6) and Eliot (4). Her writing has appeared in the Autism and Asperger's Digest (2011-2013), Parents, and the book collection Monday Coffee and Other Stories of Parenting Kids with Special Needs. Find her at www.jamiepacton.com, Facebook (Jamie Pacton), and Twitter @jamiepacton
Images provided by Jamie Pacton