The First Rule of Autism Club

Amy Greatbanks

 If you have seen the film Fight Club, then you most likely know that the first rule of Fight Club is “we don’t talk about Fight Club.”

When we got hit between the eyes with the diagnosis of autism spectrum disorder for our son in December 2007, we had no idea we were joining such a large club. The sensation of knowing for certain that my heart-achingly precious, adorable, vulnerable child had autism was soul-crushing. And all I wanted to do was say it out loud.

If we don’t give voice to this condition, we do the ones we love the most a great disservice. So many people with autism don’t have a voice of their own.

That is why I vowed that my first rule of autism club was that we do talk about autism club. Almost every day I speak to someone about my child and how autism affects his life. I have had some wonderful, important conversations with people, who are grateful for the chance to learn more, especially parents whose children attend school with my son. The most important job I have, as a mother, is to advocate for my children. By being honest, open, willing to talk and share a part of our lives, I am opening not only people’s eyes, but their hearts.

All children need and deserve love, respect, understanding, patience, tolerance, compassion, to feel safe, and a soft place to land.

Parenting is the hardest job anyone can do. It is infinitely harder for a myriad of reasons when your child has different needs — when your child does not sleep through the night, when your child cannot tolerate the smell and look of certain foods, when your child is overloaded by their entire world in one way or another.

The label of ‘parent’ encompasses an enormous number of roles and responsibilities. When your child has autism, some of these are greatly enhanced — you become their protector, their advocate, their conduit, and their filter in the world. Your home becomes a safe haven, the place of retreat and respite.

The journey of being a parent to a child with autism has been life transforming for me. I continually adjust to the new normal. Progress can sometimes be hard to see and we sometimes have to accept that this includes backwards steps, too. I take each day as it comes. I have learned to never underestimate anyone and to dream big.

I have discovered that I possess an incredible capacity to endure embarrassment. Such as when my son, after being instructed not to splash too close to the babies and their mums in the local swimming pool, decided to hug the nearest baby and her grandma. After explaining that my son is still learning about acceptable social boundaries because he has autism, I then got to debunk one of the myths of autism — that all people with autism do not like to touch or be touched. There can be an upside to most situations, it just sometimes takes a while to see them!

Like all parents, I want my children to reach their potential, to have every opportunity to learn, develop and be happy. I try my hardest to be my children’s soft place to land, to be their most passionate supporter. This is no different from any family. The intensity might be different, the focus certainly will be. The excitement of seeing your child who previously has struggled to communicate basic needs, respond to a question from a peer with ease and delight is indescribable.

But I hope you get the picture.

My hope in sharing a little of our story is that everyone knows the first rule of autism club – do talk about it, share, be willing to ask and willing to listen.