“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
Emma's Hope Book 
Well said, Arianiane, as always!
This is very powerful – thank you for writing it and for making the journey that brings you to this awareness.
The reason those articles and views SEEM disconnected from reality is that they ARE disconnected from reality. At the most BASIC level they are disconnected from the reality that Autistic people are human beings – and even more so that we are WHOLE human beings who simply function differently. from what is ASSUMED to be ‘normal’ and that OUR way of functioning IS normal for US.
The people who write and speak such things are communicating ABOUT THEMSELVES – and NOT about Autism as they claim to be. They are simply using Autism as the lens through which to distance themselves from their own reality that they are internally disconnected from and projecting that onto Autistic people.
Lol i am saying ‘simply’ – and when you have the perspective of it that i do, it IS very simple – but it is not simple for those of us on the receiving end of it to have our entire being and self-expression denied as real and valid and CONNECTED – just because those who observe as from a place of DISCONNECT WITHIN THEMSELVES cannot see that we ARE real and we ARE whole human beings with MUCH to communicate AND CONTRIBUTE – EVEN WHEN WE ARE COMPLETELY NONVERBAL.
We are not LESS than others, simply DIFFERENT. It is only the BELIEF SYSTEM of people projecting their disconnection onto Autism that tells anyone otherwise… When the specific beliefs that are acting to blind people to AND DISCONNECT THEM FROM THEIR OWN LIVED REALITY are identified, they can be challenged and proven to be untrue. That is what is needed now – for the common beliefs about Autism to be clearly identified and proven to be untrue. I think this is so important that it needs to be done one belief at a time and in a very focused way that brings the reader from the perspective you have written above that you were in all those years ago INTO the perspective you have now. It is something i have been working for ages to try to do, but i cannot because i have never experienced that disconnect internally that you describe. For the message to be communicated effectively FOR THOSE WHO MOST NEED IT (ie heard and taken seriously) it NEEDS to be written by someone who has BEEN there and EXPERIENCED that journey and can flow the energy of that journey through .the medium of their words.
Hope that makes sense – i kind of lost my focus part way through writing it.. .
Nope, seemed very focused! Thanks so much for sharing this here and for encouraging me to keep writing about all of this…
When I look at the photograph of a very young Emma, I see incredible strength. Makes me wonder how much Emma has created the family who now so well support her.
We, whether autistically or socially characterised, create ourselves, absolutely and throughout. We lean into an environmental circumstance which disposes us and sets us difficulties: but ultimately we individuate across generalities; and each of us creates ourselves a personal totality.
I would take shifting our beliefs to be, in one of its moments, akin to unweighting in parallel skiing. We are on a momentary trajectory, curving on an existential-ski edge, gliding on the beautiful snow that is the miraculous landscape in being human, our beliefs mediating that disciplined passage. In unweighting we come off the edge which takes us in a particular direction, onto the flat of our existential skis, momentarily plunging exhilaratingly downhill in uncontrolled manner, before we transfer our existential weight to the skis opposite edge, curving us off in a fresh direction through the wonder of more environmental landscape.
When we unweight regards our controlling believing, we needn’t take a next edge with the same believing with which we took a last. It would indeed be odd if we did: for we constantly are changing; and the landscape we pass through is ever changing. We should be able to abstract the idea from experience, that we control our existential travel through what believing we choose to do.
We humans are not ever truly isolated, we live through each other. Empathy sees us reading and accessing others, all others we encounter. When we trust another, in some sort of friendship, we can access the believing of that other. When we come down on a fresh edge to take fresh existential direction, the believing we rely on need not be confined to our own person and being; that being can have its living locus in the believing being done by a living other.
Across the Alpine Slope of any day, if we can shift beliefs, if we can take on fresh believing, we can carve our way through almost unimaginable existential landscapes.
Autistic individuals, because not mortgaged to sustaining social and societal outcomes, make greatest use of free-believing, work to meta-perspective not yet much mapped.
Social/societal believing has to sustain the cultural artefacts it travels with. The social person lives amongst these artefacts. Individual social believing is recruited by and harnessed to sustaining these artefacts and the totality they provide. Change is slowed, collective believing only open to highly controlled question and challenge, collective believing controlled by factors and forces which are often difficult to identify.
From that social point of view and project, autistic free-radicals, be they persons or beliefs, are fundamentally awkward to interface with and manage. The meta-perspective orientated to in being autistic, the freedom of believing relied on in autistic individuating, appear to the social person to be absolutely incompatible with what they secure through their social/societal believing. And what Ariane and Ama rightly object to, then follows.
Ultimately, although social/societal believing has its place and is of value, autistic believing is ultimately better grounded and more robust. One of the things we then have to do, is to develop a framework, of autistic believing and its discursive expression, which makes it simple and straightforward to express and sustain this vision of things, this belief in ultimate affirmation of the autistic, this belief in ultimately securing complete inclusion of and accommodation for being-autistic. Free-running on autistic existential skis. Under the sun, through forests, across mountains: feel that snow; hear that snow. No one does believe-and-go like we do.
I do love that photo and you’re so right, intelligent and so very strong! She is one resilient, insightful and wise being. I’m doing my best to follow her lead!
Love what you’ve written Colin, I always do. The poetic weaving of shifting our beliefs with slalom skiing is so beautifully apt and creates a lovely image in my mind.
Ariane do you have a link to the review mentioned? Just interested in that..
Oh and I read my son Dr Suess’s Hop on Pop tonight. Twice. He chose it.
I’ve also discovered these things called ‘Libraries’! In ‘Libraries’ you can borrow books at no cost, very useful!
Yay! Libraries!!
I just spent about 20 minutes going through old comments and can’t find the link. I’m sorry. It was left, I think, on this blog in the comments section, though it may have been emailed to me. I’ll check my emails later. It was a researcher I believe who wrote the review and wrote how Naoki’s book countered what he’d been taught about autism and how autistic people are not inherently social, but that he wondered if Naoki was an exception. If anyone reading this knows the review I’m talking about, please repost the link here, thank you!