It's Autism Awareness Month, but it seems to me that we’re all pretty 'aware.' What we really need now is support.
We all see the campaigns every April—the puzzle piece fundraisers and encouraging campaigns telling us to “light it up blue” in support of autism are hard to miss this month. As an autism parent, it’s nice to see the world at large coming together to spread awareness, but it seems to me that we’re all pretty “aware” at this point and what we really need is more support.
According to the CDC, 1 in 68 children have autism. My daughter is the “one” in that statistic, yet when she was born the number of kids who did not have autism was exponentially larger than 68. Autism was a rarely mentioned word in her early years and now it would be difficult to find anyone who doesn’t know or love someone with the disorder. I’ve watched the rates tick higher and higher since my daughter’s birth yet the awareness campaigns remain the same. With rates higher than we’ve ever seen before, I ask that you spend this Autism Awareness Month being more than just aware. I ask that you look at the list of ways you can support families with autism below, choose one and take action.
Offer to help
Remember when your child was a toddler and you had to follow them around every waking hour to keep them safe? Remember keeping them within arms distance when you were outdoors for fear that they would run towards the first major intersection? This is what it is like for most autism families every day for years and years past the toddler stage. It’s exhausting and generally there isn’t another qualified adult coming in to take the next shift. Often babysitters aren’t an option, as the demands of their children may be too much for one sitter or parents can’t afford one more expense after all of the therapy bills.
How you can help us: Offer to pick up coffee, groceries, a prescription, or even to just come to the house and be an extra pair of hands during a busy day. I was fortunate enough to have family close by as my daughter grew up, and having people nearby helped me keep my head above water on days I felt myself sinking.
Kids and adults with autism want to be included with their peers. Their parents may be feeling like outsiders from the rest of the parenting community, too. I remember taking my daughter to the park and feeling so out of place with my child, who could barely speak or balance on the stairs. The kids her age passed her by and the parents didn’t know what to say after I said the word autism.
How you can help us: Go out of your way to extend an invitation to an autism family you know. If you’re taking your kids somewhere, invite their autistic classmate along. If you notice a kid at the park struggling, encourage your kids to engage with them. If it’s an adult with autism, take them to dinner or a movie, or ask them how they would like to spend a few hours. My daughter would be THRILLED if someone who isn’t related to her spontaneously called her to do something.
There will be no shortage of autism stories floating around the internet this month. When families you know share those stories, read them. They are usually sharing because their family relates to the story in some way, and wants others to get a glimpse of what their life is like. I know many families with non-verbal children and see them often share articles about what it’s like to have a child who does not speak. Can you imagine?
How you can help us: Try to imagine knowing your child is in there somewhere but never hearing them say your name. It might feel awkward to come up with something to say in response to what they’ve shared, but it pales in comparison to the struggle they face each day. Try to reach outside of the comfort zone of your life and take time to find out what it’s really like to have autism or raise a child with the disorder.
Think about what your workplace can offer
As the rates rise so do the number of children with autism entering adulthood. These young adults need a future that we’re not yet equipped to offer. They need job experiences and volunteer opportunities and any chance they can get to build their employable skills. We have been struggling since the day my daughter finished high school to find something meaningful for her to do in her adulthood. In all of our searching, I’ve yet to find a single employer willing to look past her disability and offer a little extra support to give her a chance.
How you can help us: Think about what you do and how you might offer an opportunity to an adult on the spectrum or how your place of work might be able to welcome autistic employees. There are also families who could benefit from places becoming more autism friendly. Are you a hair stylist, a dentist, a doctor, a restaurant owner, a city worker, an apartment complex manager? Autistic individuals have a very difficult time accessing things in their community the rest of us take for granted. Can you offer sensory-friendly services once a month? Can you reduce the noise level in your place of business at certain times? Would your apartments be open to housing autistic adults? There are so many ways our community can learn to support autism families and the benefits are endless.
Because the rates are so high, you are going to encounter people with autism—at school, at your place of work, at the grocery store. Families truly appreciate it when others don’t stare or judge the behaviors of their children. Give a sympathetic smile when you see a mom trying to usher a child out of a store who looks a little too old to be having a public meltdown.
How you can help us: Hold a door, pick up what they’ve dropped, offer to push their cart or just ignore the episode completely. Anything is better than staring. I assure you they already know it is not typical of a 10-year-old to be screaming and crying through the aisles of the grocery store. Learn about the sensory issues people on the spectrum have, why they often have meltdowns and how to support their social skill issues. Your local chapter of the Autism Society is a great place to start.