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 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.
~ Middle Ground, Diary 2009
I’ve heard it said that you can’t hate autism and love a person with autism at the same time. I don’t think that’s true. I think you can abhor the thing that makes your child’s life hard. I think you can despise the challenges that he is forced to face. I think you can desperately wish that she didn’t have to struggle with the things that come so naturally to others. I think you can love your child with the ferocity and tenderness that can only coexist in the heart of a parent, while simultaneously hating the thing that denies him an effective method of communicating his most basic wants and needs.
But, I worry – really worry – about the consequences of that anger – particularly when it’s expressed in front of our kids.
We gather together and rally the troops for battle.
We shout from bully pulpits …
We must win this fight against autism!
We will do everything in our power to combat autism!
We must find a cure for this thing we call autism!
We will continue to use every resource at our disposal to battle autism!
Or even the somewhat more benign ..
We are doing everything in our power to ensure a brighter future for people who struggle with autism.
Every one of those was a real sentence from a real gathering I attended earlier in the week. Lest assumptions begin to fly, I think it’s important to note that the only one that was uttered by a staff member of the event’s sponsor was the last one. All the others were from invited speakers.
I watched the autistic children and adults who sat with their families and who listened and took it all in. I cringed and hoped that perhaps the little boy directly in front of me didn’t hear it, didn’t process it, but then I think of my Brooke. At age nine, she rattles of ‘Remember whens’ like water – “Remember when I was three and you were sorry and I cried and then you gave me the white water?” Yes, my sweet, and I remember thinking that you had no awareness of what was going on around you then. Foolish, foolish me.
So what of it? What happens as our children sit in the crowd and hear the rallying cries? How on earth do we convince them to feel safe and respected and cherished and valued when we tell them that such a big part of who they are is public enemy number one. What must that do to their self-image? How can that feel?
What if we sat in those crowds while the speaker at the podium cried,
We must win this fight against brown hair!
We will do everything in our power to combat blue eyes!
We must find a cure for this thing we call femaleness!
We will continue to use every resource at our disposal to battle heterosexuality!
We are doing everything in our power to ensure a brighter future for people who struggle with white skin!
How would that feel?
Would it be enough to say, “Oh, don’t worry. I don’t hate you; just your gender.” Or “I don’t want to defeat you; just your sexuality.”?
I know that these are desperately imperfect parallels. I get it. I know that the color of our eyes or our hair does not intrinsically challenge us. I know that neither sexuality nor gender intrinsically cause pain. I know and fully acknowledge that autism is not benign. And I know and fully acknowledge that to imply that it is does a dramatic disservice to those who so desperately need our help and support.
But I also know that for our kids, and even more for the autistic adults who I’ve come to know, autism is just as much a part of who they are and how they experience the world as is their gender, their sexuality or the color of their skin. Even more so because it is the filter through which they experience EVERYTHING.
So how does it feel?
When your mom, your dad, your siblings, the guy with the microphone says, “We will do everything in our power to cure the filter through which you see the world”?
I don’t know the answer, but I can imagine.
I’m not saying that seeking a cure for autism and thereby presenting it as an option is wrong. I don’t know that it is. I’m not sure that it’s not. Frankly, I don’t feel like I’m in any position to make that call.
The truth is, I have no idea what the hell we would do if we were offered a pill tomorrow for our girl. I do know that I want to take away her pain. I do know that I want her life to be better. I do know that I want to banish her crippling anxiety. I do know that I want her path to be far, far easier for her than it is today. And I don’t doubt that if she were more severely affected than she is, I’d want those things even more.
But I don’t know what a cure is. I don’t know what it would mean for her. Honestly, I just can’t wrap my brain around it. I understand (and pine for) the mitigation of her challenges. But I really don’t know what ‘curing her’ would look like. Or what it would leave behind.
Would her incredible memory be cured along with her anxiety? Would her delightfully unique perspective be cured along with her difficulty attending to a task? Would her ability to find beauty in the most mundane things be cured along with her challenges with language? Would she still be able to see music? Imitate accents? What about all of the other gifts that we have yet to discover? Do they get ‘cured’ along with her Sensory Processing Disorder?
This is about Brooke. It’s about empowering her; supporting her; letting her, to whatever degree she is able, lead us. She is nine. She is coming more and more into her own every day. I want her to become involved in all of this. I want her to begin to understand the concept of advocacy so that ultimately she can take the reins if she so chooses. I want her to someday understand the options so that she can tell us what to fight for.
The first step should be simple: bringing her with us. Introducing her to the community of those like her and those who support her. Helping to lead her to her village and encouraging her to find her voice.
But I can’t do that in a venue where people are shouting a rallying cry against such a big part of her identity. How can a nine year-old be expected to understand that it’s not her they’re battling, ‘just’ her autism? Hell, how can a forty year-old? I just can’t do it.
And that scares the hell out of me. Because if I can’t bring her to the place that I’m theoretically going to support her, I really have to wonder if I’m going to the right place.
Ed note: Before I wrap this up, I have to say this .. I believe, from the bottom of my heart, that the people I quoted above said what they said from a place of pure, unadulterated love and a burning desire to make the world easier for those on the spectrum to inhabit. Like me, like you, like all of us, they want desperately to make life better – make the future brighter – for our children and for all affected by autism. They want to help and I am grateful beyond measure that they have stepped into the ring to do so.