I was offended the first time someone suggested Cooper might be autistic. How dare this speech therapist make such an assumption after observing him for 30 minutes? Cooper was mellow, smart, and adored people – he definitely wasn’t autistic. The second time it was suggested that Cooper was autistic I did my best to be strong. “Yeah, we were thinking we should look into that,” I said focusing all my energy on keeping my voice steady. I sat across the table from the school district’s Child Find team, all of us perched awkwardly in miniature preschool sized chairs. When the team member I’d connected with the most started to push the box of tissues across the table, something I’m sure she’d done countless other times for countless other parents, I dissolved into an embarrassing, sniffling heap of tears. At the end of January, when Cooper was officially diagnosed with Autism Spectrum Disorder (ASD), I was perfectly composed and eagerly said, “Okay, what’s our next step?”
April is National Autism Awareness month and today is World Autism Awareness Day where we’re encouraged to “Light it up Blue” and shine light on Autism. We have definitely become more aware lately. We’ve just started opening up about Cooper’s diagnosis and reactions range from painfully awkward to fully supportive. We can only speak for our own experience, but we’d like to shine a little light on our journey and what we’re learning about Autism. As a disclaimer to all my worrying mom friends: Don’t freak out about your kid. They’re probably fine, but if it turns out they aren’t, I’d love to talk.
It’s been almost a year since we started investigating Cooper’s speech delay which eventually sent us down the path to an ASD diagnosis. It has been quite the journey encompassing a wide range of emotions. We’ve learned a lot about the Autism Spectrum, a spectrum which I like to think we are all on.* There is a lot of concern about the increasing prevalence of ASD, especially with the most recent CDC report, but the increase doesn’t just mean that it’s more prevalent. The way we diagnose and our willingness to be diagnosed is changing and that isn’t necessarily a bad thing. Even just ten years ago Cooper may not have been diagnosed with ASD and while in some ways that would have been nice, it also means he might not have been eligible for the services he receives. There is still a lot of stigma surrounding autism, but I find ASD to be extremely fascinating. While it originates in the brain, it manifests differently in every kid with no two cases being exactly the same. Because it is a spectrum it ranges from not manifesting at all to being extremely severe. Noel and I are currently taking a class with several other parents of ASD kids and it’s crazy how different all the kids are. Some kids don’t talk at all, some struggle significantly with sensory and/or behavior issues, and some, like Cooper, might have just passed as shy or difficult in another generation.
It’s hard to sit and listen while a professional lists all the areas your child is behind in, and I don’t wish that experience on anyone. It can make you feel like an awful parent, even when that is far from the truth. Research is still being done to discover the exact cause of autism (and there are a lot of theories out there both scientific and fear based), but more and more studies suggest it’s something that happens before a baby is even born. While there are certain risk factors that have been identified (advanced maternal age, not taking prenatal vitamins, maternal illness during pregnancy, smoking during pregnancy, etc) most of them aren’t even possible reasons for blame in our situation and truthfully, I’m not looking for something to blame. The only even close to plausible “explanation” is recent investigation into the link between autism and air pollution since we did live in inverted Logan, UT while I was pregnant. However, I also know at least ten other women that had babies within a few months of Cooper’s birth whose kids are fine. This isn’t necessarily true for all ASD cases, but at least for us, I’m pretty sure there wasn’t much we could have done differently. I’m a big believer in the idea that “things happen for a reason” and although I know things will be (and are) a little harder because Cooper is on the spectrum, I think Cooper was meant to be this way.
Almost every parenting book I’ve read on autism has a really depressing chapter titled something like “Rebuilding Your Dreams” where it talks about creating a new vision of who your kid is going to be. I’m sure that chapter is really comforting for some parents, but I generally skip it because it gets me too fired up. While we all certainly have hopes for how our kids will turn out, can any of us really build their dreams? That’s for them to do. I’m not in control of Cooper’s dreams and I never was. Having a kid on the spectrum has just given me that reality check earlier than most parents. I often feel lucky that Cooper is so “high functioning” as they say, but no child and no parent should ever be told to stop dreaming about what’s possible. Lately, I’ve been drawn more than ever to stories about people with supposed “disabilities” doing far more amazing things than those of us who are “normal.” Early on in the diagnosis process a friend recommended I watch Temple Grandin and I remember feeling quite comforted. Even without all the therapies we have today, Temple went on to do great things in large part because her mother never gave up on her and never curbed her dreams. Cooper is still really young, so I really have no idea where he’ll end up, but even if his dream is to just be a normal guy with a career and family I know he’s capable of it and Noel and I are here to help him. Ellen Notbohm, an author and parent of a child with autism, said, “autism itself is not awful. Not understanding it, not having people around you who understand it, not getting the help that is surely out there for your child – that can be very awful.”
When Noel and I met with the team that diagnosed Cooper to hear their final verdict they gave us the book Ten Things Every Child with Autism Wishes You Knew. As soon as we got home I cracked it open. The first chapter starts “I am first and foremost a child. I have autism. I am not primarily ‘autistic.'” I couldn’t read any further because by that point I was sobbing. After months of focusing on this “problem” Cooper has, it was so nice to be reminded that Cooper’s autism is only a part of who he is. It doesn’t take away the fact that he’s contagiously happy, generally polite, clearly intelligent, and an all-around-sweetheart. Sometimes Cooper is difficult because he’s on the spectrum, but sometimes he’s difficult because he’s a three-year-old. If I could teach anyone anything about Cooper and autism in general, that point is what I would want them to know. (Here’s a summary of all 10 things for those interested.)
When we talk about autism we tend to focus on all the things that are considered deficiencies, but just as all of us have strengths and weakness, individuals on the spectrum also have strengths and they often stem from their autism. There’s even a school of thought that if the autism gene didn’t exist many wonderful things like Mozart’s music, Van Gogh’s paintings or all of Silicon Valley wouldn’t exist either. At the end of the book Ten Things Every Child with Autism Wishes You Knew this last advice is tacked on:
“View my autism as a different ability rather than a disability. Look past what you may see as limitations and see my strengths. I may not be good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, or pass judgment on other people? I rely on you. All that I might become won’t happen without you as my foundation. Be my advocate, be my friend, love me for who I am, and we’ll see how far I can go.
Cooper sees the world through a different perspective than most of us do, but that isn’t always a bad thing. There are things that are and will be rough for him and by default for us because we’re his parents, but he’s our Cooper and we wouldn’t trade him for the world.
Lastly, if I could give you any advice on how to talk to the parent of a kid on the spectrum, please don’t tell them how sorry you are. Those particular words (no matter how well intentioned) can crush a parent’s heart a little because if they feel anything like me, they aren’t sorry that their child came into their life. Instead, offer your help, give them a hug, tell them something great about their kid, or tell them they’re doing a great job and to keep fighting the good fight. We have been lucky to have many wonderful people respond in those ways and I hope those types of reactions can become the only ones.
*The use of the “spectrum” as a diagnosis is actually fairly new. In May of 2013 diagnoses like Asperger’s and other autism disorders that were previously viewed as distinct subtypes got rolled up under the umbrella term “Autism Spectrum Disorder” (ASD).