When you have a child who is diagnosed as having an Autism spectrum disorder (or in the new DSM-V – Autistic Disorder), there seems to be this notion that you have two choices – to accept the Autism… or not. It’s even a thing, “Autism Acceptance”.
There is this idea that Autism is an untreatable disorder that just happens to people. Most claim that we don’t know ‘why’ this is happening to 1 in 66 children. It just is. We must accept it.
If only it were that simple.
I refuse to accept this epidemic that is causing millions of children to live in physical and emotional pain for their entire lives. When you add to that the ripple effect of this disorder on caregivers, communities, schools, and healthcare providers – which sometimes leads parents to kill or abuse their children with Autism – how can we dream of simply accepting the weight of this burden?
I understand the goal of “Autism Acceptance”. We all want, and have a right, to be accepted and celebrated regardless of our differences – the things that make us uniquely who we are. Working and relating with people on the spectrum – 1 in 66 humans in the US at this point, though I actually believe the numbers to be higher – takes special skills, an open heart and a willingness to put aside our own ideas about what people ‘should’ be like. We have to accept that humans on the spectrum, and all other humans, are allowed to be who they are and accepted for who they are, completely. I will always accept people who have Autism, but I can not simply accept the fate of Autism itself.
You see, my son is not Autism and he is not Aspergers. He is a human. He carries a diagnosis of Aspergers Disorder. And I accept him.
But when he was 3 years old and experiencing full blown emotional breakdown because I put his food in the wrong colored bowl – no, I could not accept that this was going to be his reality, our reality, forever.
He was in pain; it was physically and emotionally painful for him to switch from wearing long sleeves to short sleeves in the summer. When his emotions went off the rails because of a change, and we could rarely predict which one or when it would happen, his emotional distress was completely genuine. He wasn’t being a brat, he didn’t need a ‘good spanking’ and we weren’t doing anything wrong as his parents. His brain just could not compute the input and off the rails we would go. It was a ride we would go on several times a day, 10, 20, 30, 40 minutes at a time, never really knowing when it would end. When your child is screaming, 2 minutes is a long time, but 40 minutes is an eternity.
If your child was sick, say with cancer, would you just accept they were in pain, that the cancer was destroying them? No, you would treat them in whatever ways you knew how. You would do everything in your power to eliminate their pain and improve their quality of life. You would accept the diagnosis, but you wouldn’t be complacent to it. You would fight.
So that’s what I did.
Doctors didn’t have any answers, just a diagnosis. While it was validating as a parent to know it wasn’t some fatal parenting flaw that caused him to behave and react how he did, it didn’t change anything in our day to day lives. My insurance wouldn’t even pay for more than 2 sessions of OT for sensory integration therapy. I was completely on my own to navigate this. I had to treat my son’s pain and discomfort. I had to do something.
At the resistance of my then partner, his other mom, I implemented diet changes. I added in supplements. Some of it did nothing, some of it changed the course of his life forever.
I don’t believe anything we did to help treat his Autism changed who he is at his core. He is still bright and affable with a huge heart. All we did was turn down the noise and static that was preventing him from living fully – we helped remove the big barriers that were keeping him from being who he truly is.
From the moment he entered first grade he has never needed much extra support in school – at least no more than your average kid. He has negotiated friendships and his learning environments beautifully with a few, typical, speed bumps. Today, he is a quirky teenage boy who loves playing Monopoly with his friends. Yes, he gets disappointed when he loses, but he doesn’t flip tables or break down when this happens. He handles it as well as any other kid would. If I had accepted his diagnosis of Autism and done nothing, we would not be here.
When we were in the trenches, there were times when I clutched the edge of a horrible day with white knuckles, fearing that tumult would be the climate of our lives forever. It was those times when I didn’t dare let myself dream that his life would turn out the way it has. It was those times that forced me to sweep together all the little bits of hope I allowed myself and do something, anything, to help treat this ‘untreatable’ disorder.
I asked him the other day, now 13 years old, if he wanted to be re-evaluated. I told him he would very likely lose the diagnosis. He said he didn’t care. He doesn’t believe it will affect his life either way. He accepts who he is, and I accept who he is. All the neurotypical parts. All the Aspergers parts. All of him. I accept my son, but I will never sit silently and accept that fate that Autism has to offer.
I will always support parents who choose to seek recovery and remediation because I know they don’t want to change who their children are, they want to allow their children to live fully, just like the rest of us. And that’s not too much for any parent to ask.