Since this is autism awareness month, many of us in the media have done many stories about autism. As a matter of fact, my show tomorrow (WHYY FM 12 p.m.) will be covering research and policy around autism treatment. But nothing captures the experience of being a parent of an autistic child as well as Amanda Radcliffe did in the following essay:

Have you ever been caught in a maze? Winding around a corn field, in a themed haunted mansion, or at the house of mirrors on the boardwalk? Remember Harry Potter’s adventure inside a maze in his last tale, Harry Potter and the Prisoner of Azkaban? We all know the feeling. Lost and wandering, not knowing which direction to turn, or where to go, thinking we’re home free, only to find a dead end and the need to return all the way to the beginning. So many hopeful paths explored often leading to only disappointing turn backs. Usually there’s a lot of backtracking before you find your way.

That’s what living with autism is like.

If I had a nickel for every time someone’s asked, "why does your son do that?" Maybe he’s screaming, flapping his hands, walking on his toes or throwing a tantrum like a two year old. He is six. Maybe you’ve asked him a question and he just looks away. Truth be told, I don’t know why he does these things. I have yet to find a doctor, therapist, teacher, or psychic for that matter who can tell me exactly what’s happened with my son Callum, how he got this way, and what on God’s green earth is the best thing to do about it. So, when I’m asked, "why does your son do that?" I often respond that I simply don’t know. That modern science hasn’t figured it out yet and I’m just a worried mother trying to love him and raise him the best way I can. Finding our way, lost in a maze.

Autism is a neurological disorder typically appearing in the first three years of life and primarily effects social interaction and communication skills. It is what’s known as a spectrum disorder which means it can be mild or quite severe in its manifestations.

A primary challenge of having a child with autism is that no one has the answers for you. No one can tell you what the best course of treatment is for your child. How to best help them reach their potential. Each child’s symptoms and needs can be so different. So we wander. We educate ourselves as best we can. Here, I must simply interject to all of you kind hearted souls who call the mom you know who has a child with autism when you see a snippet on TV, trust me, we’re on it! You learn more than you ever imagined about something you couldn’t possibly dream of touching your home and your family. Education encompasses so much in the world of autism; gluten & casein free diets, auditory processing, sensory integration, supplements, B12 shots, chelation of heavy metals, drugs galore if you are willing, therapies such as floortime, RDI, ABA, IEPs, IUs, Special Education and the list goes on and on and ends somewhere around swimming with dolphins and Zoloft!!!. These are the choices we’ve been making when the ones we should be making are little league baseball or spring soccer, bicycle or skateboard, Power Rangers or Batman?

So we work our way slowly through, always wishing for that bird’s eye view to the finish. So many agonizing twists and turns. Some have been helpful and some have been incredible wastes of energy, money, and most importantly, time that we don’t have to waste. I now fully acknowledge that a jerk can sell a desperate mother just about anything. There is no price tag on hope.

We are fortunate to have excellent professional advice. A phenomenal DAN (Defeat Autism Now) doctor, a therapeutic team leader who’s as vested in our son as we are, teachers who care, a wonderful supportive family, our sense of humor, and genuinely good hearted friends who call when they see that snippet on TV. We are grateful.

On good days, when Cal is talking, laughing, playing with his sisters, and had a great day at school, I think for a moment that just over the hedge, I might glimpse the way out. A spot of daylight is there, visible through a small opening. Normal, or officially known as "neurotypical", boys are there playing happily, waiting for Cal to join them. And then like Harry Potter’s infuriating maze, the way closes off and we step back again. On bad days, when he’s hit and bit and barked and screamed, I am lost, huddled on the ground in a corner weeping and wondering what will ever become of my son. Will we ever escape the cruel labyrinth of autism?

We stood at the daunting entrance three long years ago and still we fight every day to find our way. I’m a smart and reasonable woman and I realize we may never find the exit, but we’ve made progress. Hedges hurtled, obstacles crossed, demons exorcised, paths blazoned, we keep fighting forward, two steps ahead one step back. After years of hard work, primarily his, Cal is tremendously better than he was at the age of three. We still have far to go and there is no time to rest for the weary.

I gotta run, I think I spot some light just around the next corner…"C’mon Callum! Let’s keep going! That’s it baby… one more step."