“It’s a simple program, but it’s not easy.” These were the words I remember someone saying to me during those first few weeks so long ago when I entered a 12-step program. As with most of the things people said during those first few years when everything was still a blur, I heard the words, but didn’t really understand or care what was meant. Not really. The slogans seemed trite and silly. I heard them, I read them, but I didn’t pay much attention to them other than to make fun of them. And then as the days of not acting on my addictions piled up and my head began to clear, as life continued along and I with it, I started to make sense of this phrase and so many more that were said during those early days.
Like everything in life, things are rarely how I expect them to be. The years since I walked into those recovery rooms have not unfolded as I thought they would. I am not doing what I imagined I would be doing, my life does not resemble the life I once led nor does it resemble the life I imagined for myself. All of it comes as a surprise. Perhaps the biggest is how much I have come to love so many of these slogans that I once viewed with contempt.
The things I learned in those early days of recovery are things I continue to apply to my life now: “Take it easy,” “Keep it simple,” “Practice the principles in all our affairs,” “Circumstances do not make us who we are, they reveal to us who we are,” “Don’t curse the darkness, light a candle,” “Compare and despair,” “We’re responsible for the effort, not the outcome,” “Change is a process, not an event,” “resentment is like drinking poison and hoping the other person will die,” “sorrow is looking back; worry is looking around; hope is looking forward,” “serenity is not freedom from the storm, but peace amid the storm,” “F.E.A.R. – False Evidence Appearing Real.”
There are too many program slogans to list here, but almost all of them can be applied to every aspect of my life today, particularly when it comes to autism. There is so much that I feel discouraged by when it comes to autism, what is said, what we are told, what is believed to be “true”. As I continue to learn, as my daughter continues to write, the farther away we drift from the commonly held beliefs about autism and my child and friends who are Autistic. I read articles written about autism and Autistic people and I recognize none of my friends, daughter or anyone I know. The articles and views seem completely disconnected from reality. I read what so many other parents say and I have to remember to remind myself that I once believed these things too.
Recently someone sent me the link to a book review of Naoki Higashida’s book The Reason I Jump. The review was written by someone who works in the field of autism and yet was incredulous that Naoki talks with such insight about his social interactions, speaks of feeling ashamed when his body does not cooperate with his mind. The reviewer wonders aloud what (if any) the implications are for others who are non-speaking and Autistic. Of everything written about Naoki’s book, this was the review that has continued to haunt me. Here is someone who has spent his life researching and working in the field of autism and yet, Naoki’s book comes as a surprise. How is this possible?
It’s possible because those who are in the field have been given incorrect information and then look for verification that align with what they’ve been told. Yet this bias is not how research should be done. Until we are willing to accept the idea that maybe, just maybe what we believe to be true is not, we will not be able to believe anything different. And as a result all of our Autistic children, friends and people will suffer the consequences.
Emma – 2003