Friends, there has been much discontent among the ‘autism community’ – which in my understanding is the correct term for *all* persons with an interest in autism to include parents, Autistics, professionals, educators, advocates, etc.
I have remained quiet and abstained from such discussions. Not because I lack passionate opinion, but because my interest is in remaining a useful member of the community. Even in advocacy efforts, I have attempted the impossible of not affiliating myself with one particular organization over another simply because of the intense conflict over the years, most of which occurred long before I came on the scene, and sadly seems to be progressing rather than waning. What is most upsetting is that these divisive chasms make the possibility of unfettered autism unattainable.
That’s right – unfettered autism. Because that is the wish I have for all who parent autism, live autism, educate autism, advocate autism and embrace autism. It is also my wish for those who see autism as unpretty.
I feel in order to exist as a community, it requires us all to speak our own truths as we see fit in a respectful manner. A manner which takes into consideration that none of us are an expert in autism. Autism, and Autistics, cannot be contained in one definition, one area of expertise, one science, one belief system, one treatment plan, one advocacy campaign, or one collective understanding. As in all meaningful exchanges, not only should we speak our own truths, we must listen and accept the truth of others.
To consider the impossibility for any forum to contain both parents and Autistics is as devastating as either group not considering the natural differences in each other’s experiences. Such exclusivity of what some see as polar opposites of the autism community is as deadly as our country’s inability to come together and discuss gun control in a civil and respectful way. It suggests that my own home is considered a battleground between my love as a parent and the individual rights of my daughter to be an Autistic. Absurd. What my home and my family live each day is no more open to debate than what an Autistic should be able to achieve in life. The answer to both is whatever works. [May I also add, that for gun control to be debated only by lawmakers, lobbyists and activists rather than including victims and citizens from our poorest city streets to the most affluent suburbs is equally ineffective. I digress…]
When my daughter was born with a chromosome deletion, doctors said that if she survived at all her life would be limited. She may never sit up, smile, walk or talk. It was devastating news. And as a mother, I can say this with sincerest honesty and truth – I wanted my daughter fixed. The layers of what that means to me and my daughter cannot be experienced, understood or explained by anyone outside of us. And it does not afford any person the right to judge that onion. I can only touch upon the intent of such desire by saying that I chose for her to be cut open and given a life-sustaining feeding tube. I chose for her to be cut open again and her heart repaired so that she could run and play as she grew older. I chose these ‘cures’ to allow her the most opportunity for an enriching life – whatever that would mean for her. As a mother, I feel that is my greatest responsibility.
When autism was included in her list of many diagnoses, yes, I wanted to fix that, too. I wanted to learn everything I could about autism so that I could get RM the treatments that would afford her a better life. I wanted her to be successful, to be active in our family life, to fulfill every ounce of potential within her to live her best life for her. Never have I set out to change who my child is meant to be, rather as her parent I feel the responsibility lies in adapting to her needs and her autism. That requires an open mind, an open heart and the building of a new parenting framework. Simply put, this is not the parenting we expected and therefore as parents we have much to learn in order to grow with our autistic children. It’s a process, a journey. Sometimes we get it right, and there are times we fail miserably. With hope and love, we try again.
Though I am no expert, I have learned enough about autism to know that my daughter is amazing regardless of the challenges she faces. And though it has taken time for me as a parent to digest it, I know that autism is as much of who she is as the freckles on her nose. It took time for me to learn this framework of parenting autism that differentiates between fixing a problem and growing a useful tool box. It took time for me to unlearn the unpretty and embrace the unfettered. It took time to expect RM to work hard for what she wanted instead of making excuses for why she couldn’t. At her pace, with her own tool box. For us, that meant advocating for an outplacement autism school. Not to fix her, but to unfetter her.
As a parent, I am thrilled to learn as much as I can from self-advocates because I want my daughter to grow up empowered as an Autistic. I have come to rely on the useful perspectives of those who choose to speak their truths and work within the autism community to bring us together toward a common goal of understanding the very real spectrum of this spectrum. I rely on my fellow parents to walk this road with me and I rely on Autistics who have navigated the road ahead to guide me.
My wish is not for compromise of truths, but communion. I wish for a universal agreement that the unpretty is unproductive.
I am trying. Every day I am trying to grow my children. I am trying to forge a better path for my autistic daughter. I am trying to share our truth and I am listening in effort to understand yours. Sometimes I get it right. Many times I falter. But I am trying.
This is my unfettered and sometimes unpretty truth as an autism mom.
This is my unfettered autism: