Adventures in Understanding: Raleigh mom raising awareness about parenting kid with autism

While pictures shared on social media typically portray the perfect life, so many families are facing mighty struggles that go unseen.

By digging deeper, building stronger relationships and fostering communities that are welcoming of all families – including those with unique needs such as autism spectrum disorder, Amanda Steele, mother of three boys, believes we can change the world.

Steele wants families like hers to know they aren’t alone – and encourages others to join her in overcoming the long, lonely journey of raising a child on the spectrum by speaking up. Here’s a Q&A:

These kids need rest and quiet time because the world is loud and overwhelming. Autistic mamas are on constant alert – we assess every situation and always prepare for a quick escape. That’s why many families like ours often withdraw from our communities, friends and extended families. There is so much grief that comes from withdrawing and watching the world go by as you struggle alone. We’re often labeled and judged instead of embraced and advocated for.

So, I guess I take it for granted that others don’t think like me. In my mind, when something is wrong or there is a giant issue facing us, it is just a natural output for me to help others see how and why we need to act. It is natural (note I didn’t say ‘easy’) to advocate for my son and others like him. I don’t take no very easily and will use all of my energy to find a better way.

Unlike just about any other diagnosed health problem, autism comes with a stigma. It’s like a label that families can’t escape, so people don’t talk about it for fear of discrimination. But as a mother, I know my autistic child is a gift – to me and to the world – if only there were more acceptance, more options for children like him.

My hope is to raise awareness and understanding of the challenges we face, to start the conversation, so we can demystify the label and make room for these beautiful children in our homes, schools and churches. New studies suggest that 1 in 40 are now diagnosed with autism, yet 85% of college graduates with ASD are unemployed. In so many other areas, our country has embraced diversity and understanding – my goal is for us to do the same with our autistic community.

Churches could offer a quiet room for kids to listen to the service. Staff could get to know these families and find creative ways to involve them in the community, equip volunteers and teachers to understand how these kids struggle and embrace them. Maybe even turn the volume down a decibel or two. At one church, my son was kicked out of Sunday school several times, and at another, I worked with staff to help explain our struggle and it just fell on deaf ears. For families like ours, churches could provide a safe and supportive community – and yet, in many cases it was just the opposite.

Independent schools need to make room to teach these brilliant minds instead of turning families away. Our public schools – which work on limited resources can do it, yet independent schools that have the resources to invest in offering much-needed support choose not to do so. This feels heart breaking and discriminatory. Do we build a wheelchair ramp for those in a wheelchair? Of course we do. Why not make a small accommodation to allow a student on the spectrum to eat his lunch in the library? Small changes aren’t that difficult to implement and it’s most often the right thing to do.

Communities, families and individuals could be more intentional about including those who are different. Autistic families are so often on an island, dealing with the challenges of their lives – yet have very few outlets for true connection.

It is my hope and goal that one day, communities, schools and churches will find a way to embrace these beautiful, gifted children so they can thrive and flourish into adulthood. For now, I’ll share our story with anyone who will listen in hopes that it can help future generations of autistic children.