When my daughter was first diagnosed with autism at the age of three, I was terrified. I will never forget the day that I saw the word in print for the first time. In a blur, I ran from my desk and made my way through the corridor to the ladies room at work. There was no air in the rest room. The walls closed in as if in a nightmarish fun house. I couldn’t breathe. I gagged. I heaved over the toilet and clutched the cool porcelain like a life line. I nearly threw myself into the wall just to FEEL SOMETHING ELSE. I didn’t know what to do with the fear and the rage. I swallowed them. I lost words. I couldn’t function. When I finally found words, they were, ‘How did I not do anything earlier?’ over and over and over again.
Autism was HUGE then – a terrifying beast of mythic proportions that I neither knew nor understood.
Three years later, I am stronger. I have (mostly) moved away from the unproductive anger and paralyzing fear that I felt that day. I have faced not only autism but my own insecurities about fitting in and standing out. I have found my own voice as my daughter has found hers. I have learned to hone in on sensitivity, compassion and tolerance and to foster them in our family and in our lives. I have found myself in the process of forging a path to my daughter. I have come light years from the bathroom floor where I started this journey.
Over the past three years, my view of autism has evolved, and continues to change with each passing day. In that time I have come to see that there are as many approaches to autism as there are people on the spectrum. That there as many right answers as there are questions. That there is no one size fits all solution to any of it.
Early on, I was horrified and angered by what I read of the neuro-diversity movement. I simply could not embrace the idea that something that in so many cases was so debilitating should be celebrated. I could not look at my friends who had never heard their children’s voices – who were trying so hard to contain the smearing of feces on walls, whose children were biting and hitting themselves, hurling themselves on the ground, running headlong into traffic, struggling through every aspect of their day – and tell them that those ‘differences’ should be celebrated. I saw only the extremes, and the need for immediate action.
Three years later, I see the grey area. Or, better said, I’ve discovered a rainbow between the black and the white. I’ve chosen to live in it – in this colorful patchwork of belief and methodology here on the middle ground. I have found that this need not be – can not be – an all or none proposition for me or my daughter. That there are indeed parts of autism that can be celebrated. That there are challenges that can be reframed over time – that may well manifest themselves as gifts in the right settings. That in some ways, autism is quite simply pretty integral to the amazing little person that I would give my left arm for. Looking at my incredible 6 ½ year-old girl, I no longer know how to separate Brooke from autism or autism from Brooke. I don’t know anymore that I would want to simply make it go away, because I’m not sure anymore that SHE would. If that makes me a card-carrying neuro-diversity mom, so be it, but I don’t think so.
I still want desperately to help her mitigate the challenges of autism. I still want to give Brooke the tools that can make life less hard for her. It tears my heart out to see her struggle. But to demonize autism is to demonize a big part of who my little girl is. And I find myself less and less capable of doing that. It’s messier than that. It’s sticky and it’s hard and it doesn’t lend itself to a surgical extraction. If we could eradicate autism today, I don’t know what would be left behind. I don’t know that I would recognize my little girl without it. It may scare the hell out of me to say that – it does scare the hell out of me to say that – but challenges and all, autism is part of who she is.
But I don’t claim to speak for anyone else. I stand in a unique place with a unique child, just like the millions of other unique parents with one of a kind children. I certainly don’t claim that no one should seek an all out cure RIGHT THIS SECOND. Of course they should. And I will stand beside them as they do. I can’t make that decision for anyone else. Hell, I’m admitting that I don’t even feel like I can make it for my own kid.
But that’s me three years in.
After watching the ‘I am Autism’ video yesterday, I was thrown for a loop. Suddenly, all of these questions were swirling and whirling through my head and I had to face them head on.
I have talked about what I see as the need to de-mystify autism and those who live with it every day. To show the world what it really means to live with a brain that works differently from the norm. To engage people in the conversation, to bring them to a place of understanding and compassion. To gather and energize an army of folks to help in the search for answers. I don’t think that has to mean watering it down for public consumption. Autism isn’t cute and cuddly, even if my kid may be. But I don’t think it necessitates building it up either.
I watched the parents at the end of the video and I know they are supposed to make me feel hopeful. They make the point that they are strong enough to fight this fantastic beast that has taken our children. But honestly, I felt sad and tired and overcome by emotion. It brought me right back to that moment, three years ago when autism was that big – that sensational – that terrifying.
Three years ago, the video might have killed me. But even today, the remnants of that terrified mom in the bathroom are still there, watching it with me. To her I say,
You will be ok. This WILL NOT destroy you. It does not have power that you don’t give to it. Your dreams may change, but they will be no less meaningful or worthy of dreaming. Nothing can take away your hope. Nothing will. Autism will not destroy your marriage any more than it will destroy you. It may show you some things about yourself and your loved ones in stark relief, but everything you see through that lens was already there. You will find your way. YOU WILL GET THROUGH THIS.
I would beg her to read what she will write to a friend – to herself – three years later.
And then I would invite her to take a seat next to me, right here on my colorful patchwork of middle ground.