World Autism Awareness (or Acceptance) Day: Hope and More Hope for Autism Parents Like Me
Every time I hear Coldplay's song "Clocks," I cry. It's a conditioned reaction; a rocket back to 2003, when "Clocks" was ever-present on the radio, my son had just been diagnosed with autism, and all anyone would tell me was that my life was going to be a shitstorm of misery—and so was his. I cry when I hear "Clocks" because I'm instantly wracked with that phantom hopelessness and depression. I cry because the system that was supposed to support and protect my son looked at us quizzically and shrugged. I cry because I let other people convince me that we had no right to consider ourselves a happy family. I cry out of fury over all the kids just like my son whose families never find their way back to happiness. And every time "Clocks" makes me cry, I think about how wonderful it would have been to start from a good place—closer to the place I am now—instead of an awful one.
So that's what I want to talk about today, on World Autism Awareness Day, which I prefer to consider World Autism Acceptance Day. I want parents like me, whatever ages your children are, to have plenty of reasons to be hopeful.
We’re getting better at identifying autistic children of all abilities, at understanding they have always been here. (That's what the CDC's new 1 in 68 estimate for autism, released last week, actually indicate.) Awareness of just how many autistic children there are in our society (and that they will spend most of their lives as adults) will hopefully lead to better supports and resources. We have much work to do towards establishing those resources, but it is no longer reasonable to talk about autism as an epidemic, nor is it reasonable ignore the legitimate needs and desires of so many people. Or their families.
We’re getting better at understanding what autism means. We now know that we may not be able to properly gauge an autistic child's abilities until we evaluate them for sensory issues. We now know that more than 50% of autistic children have "average or above average intelligence." We know that Hispanic and African-American autistic kids who do not have intellectual disabilities are probably still flying under the diagnostic radar—but that the autism rate in those communities is likely similar. We know that girls fall through the cracks as well, even when they fight for diagnoses, because autism diagnostic criteria are skewed towards boys. All this means you, as a parent, have more ammunition when fighting to get a diagnosis for a child who does not fit the "classic" autism profile, because there no longer is a classic autism profile.
We’re starting to realize that autistic people of all abilities can make lifelong developmental strides. Huge ones. After age 18. In their 30’s. In their 40’s, even. So while it’s important to get your child supports they need as soon as you realize they need supports, do not kick yourself if you missed an “early intervention” window, and especially do not listen to anyone who tells you “your child will never speak,” or some such malarkey. As autistic parent advocate Carol Greenburg notes, professionals do not have crystal balls, or the ability to predict the future. Believe in your child, presume that they are competent, and never give up.
We live in the internet age! No parent with internet access should ever feel isolated, or without information options. While the Internet does feature questionable (and some downright harmful) autism resources, there are also guidelines for identifying and avoiding such twaddle. And there are some really fabulous online communities for learning about practical and positive autism approaches, like Thinking Person's Guide to Autism's Facebook page, where I am senior editor and which as of this writing brings together more than 40,000 parents, autistic people, and autism professionals for rousing and exhilarating learning discussions (or venting; venting can be necessary and healthy).
We live in an age of autistic role models, in which autistic people themselves can tell you that they'd prefer to be autistic and happy, not non-autistic. So focus on what your child loves, and on their quality of life as an autistic person, and don't listen to anyone who tries to change your child's brain into something it will never be. No matter your child's abilities, there is an adult out there who understands what it's like to be your child, and can help you understand your child in ways no one else ever could. There are so many generous autistic souls on the Internet. Find them.
We live in the age of tablet computing and increased access to AAC (augmentative and alternative communication). Kids like my Leo have options for demonstrating abilities and entertaining themselves that just didn't exist as recently as five years ago. Take advantage. If you can't afford the tech, crowdfund it or get creative. It works. And your kid deserves the chance to soar.
I want other parents to start out hopeful, and informed, so they can focus on treasuring their kids even as they work on understanding them better. I really resent having been through such a rocky start to autism parenting, and I really think it doesn't have to be that way.
So, a final Autism Acceptance Message for you: I adore my autistic son. Just as he is. I would love it if things could be easier for him. But that's on me and the rest of the world, to care enough and work hard enough to ensure that autistic people feel accepted, understood, safe, and loved—unconditionally. Just as they are. At what ever stage they are at.
If Shannon Des Roches Rosa had a time machine, she'd deliver these messages of hope to herself in 2003. Instead, she shares such messages with the readers at ThinkingAutismGuide.com, BlogHer.com, and Squidalicious.com.
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