April is Autism Awareness Month and, if I am being completely honest, a few years ago I probably felt like it was just another month of the year that we bring attention to some cause or issue that everyone already knows about. The reality is- lots of people have heard of autism, but very few people actually understand autism. Autism wasn’t really on my radar for most of my life. I had heard about autism, but my understanding of it was as limited as having seen the movie Rain Man. Yikes. And then our son was diagnosed with autism and my need to engage with the autism world changed.
We adopted our son in March 2014. He had been in our care since 2011, and we knew when we brought him into our home that he would probably have some needs beyond the “typical” child. He started working with an occupational therapist at just 9 weeks old when he wasn’t doing some of the things that he should have been- turning his head at sounds, grasping objects, etc. For a long time I just thought he was “developing at his own pace” and that his skills would emerge in his own time, but around his 2nd birthday I started to think about autism as a possibility. His peers had language that seemed years beyond my son’s capabilities. He started expressing some OCD tendencies such as lining up his toys over and over and only eating with a particular spoon in the house. He started to show distress at new or overwhelming environments. But what finally pushed us to really discuss our long list of concerns with our doctor was when he stopped sleeping- and when I say stopped sleeping, I mean 1-2 hours of sleep a night for weeks on end. We were exhausted. And sure enough, after some testing and discussion, he was given the autism diagnosis.
In so many ways, that word changed our lives forever- it opened up a whole new way of understanding our son and our future with him, it gave us access to resources we had never had before, and it gave us tools to interact with him more effectively. Ultimately though, it didn’t change or define our child. And 6 months post-diagnosis, I still feel that way. Autism is a characteristic of my son, the same as saying that he has brown hair or that he likes cars. It doesn’t define him. He is still the hilarious, adorable, and totally awesome kid we welcomed into our lives almost 4 years ago. We talk about autism freely, not because the label matters all that much, but because we hope to demystify it. Autism isn’t a word or a diagnosis to be feared- it’s just a word and a set of behaviors.
Today, our son is still mostly non-verbal and attends 7 different therapies each week to help him function more effectively in everyday life. He likes to eat French fries and watch the same movie over and over and over again. Sometimes he still doesn’t sleep. He rarely wears clothes when we are home. We recently got a second diagnosis, and I am sure it won’t be the last diagnosis we get. I’m not sure what his future holds, but I am sure that today I am so grateful for the privilege of being his mom and that I love him with everything I am. So this month, as a parent to a child with autism, I challenge you not to let the month pass without increasing your own awareness.
Here are some simple things you can do:
- Learn something new about autism. Learn about the symptoms, learn about appropriate ways to interact with a child on the spectrum, learn about how it impacts families. Never stop learning. I’m still learning all the time and it’s a part of my every day!
- Share what you know– on social media, in a conversation, whatever. A lot of families who are impacted by autism spend a significant amount of time advocating for their kid and debunking myths about autism. The more that the broader community understands autism, the less work families have to do to ensure that their children are treated appropriately.
Here are some simple ways you can help support a family raising a child on the spectrum:
- Send them a note of encouragement. It doesn’t have to be much- just a simple “You are a really great parent” can mean the world, especially on a tough day.
- Inclusion, inclusion, inclusion. If you have a friend parenting a child on the spectrum, include that child in everything you typically would have. We love that our son is invited to birthday parties even though he doesn’t really interact with other kids. And, even more, we love that our friends understand when we say “I’m sorry, I think that might be a little too much for him”.
- Ask about updates. Autism is an ever changing thing- new skills and new challenges emerge all the time. Genuinely engage with a parent about their child’s development. Even if they have a string of set-backs to talk about, just feeling like you genuinely care about their child’s progress feels great. We all love talking about our kids, right?
- Celebrate victories! When I text a fried to say that my almost 4-year-old son now has 11 words in his vocabulary, kept his clothes on in the grocery store, or tried a new food, I love when they act like it’s an over the moon accomplishment. These “accomplishments” may be such a small thing to most parents, but to me it’s like heaven and earth have moved.
- Ask questions. Ask how you can be supportive. Ask how you can make your home or your environment less intimidating to a child on the spectrum. Ask about the things you don’t know. I’m never offended when somebody has a respectful autism related question; I’m actually encouraged that they want to know more.