In the spirit of “Autism Awareness” month, I’ve decided to write at least a few posts this month devoted to the kind of “awareness” I would like to see more of. Awareness can be subjective and the awareness being pushed, this month in particular but, most of the time is usually not the awareness I wish I had been given when my daughter was diagnosed almost nine years ago. I believe awareness should help us, not make things more difficult. In the best case scenario, awareness gives us options and makes us feel empowered to make better decisions. Awareness is the opposite of ignorance, yet more often than not, when it comes to autism, so-called “awareness” becomes an abettor to ignorance. This is not as it should be. Awareness, in its true form, is a good thing, even if not easy, even if becoming aware is painful, even if awareness makes us uncomfortable, it (hopefully) leads us to act in a more thoughtful manner.
E., whose blog The Third Glance, is someone I urge everyone to follow. I first became aware of E.’s blog shortly after I found Julia Bascom’s blog Just Stimming. So within a 48 hour period I read Julia’s blog and then found E.’s blog and read My Cat is My Hero, Executive Function and Words, which describes in beautiful detail the pitfalls and distractions of having a conversation with a group of people. Growing Up Autistic where she writes, “Anything related to my Autism was punishable, regardless of the actual magnitude or relevance of the offense.” A little farther along she writes, “I am Autistic. I was abused for it. My whole person was trained to be invisible and I was taught that I didn’t matter.”
I read E.’s blog and I learned and my awareness increased and I started to see how things I’d been told, things I’d been made “aware” of were actually incorrect. E.’s blog was the kind of awareness I needed. It was the kind of awareness that helped me make different decisions. This was the sort of awareness that helped me understand, helped me take more informed actions, helped me seek out more information. Isn’t that what “awareness is really all about? Isn’t awareness suppose to be about gaining knowledge? I want knowledge. I don’t want knowledge disguised as fear.
Em, having appropriated my black shawl, takes a morning stroll in Tampa
On March 1st, 2012 my life changed. I had no idea it was about to change. I had no idea a single blog post would impact my life the way it did. I didn’t know when I clicked on the link a commenter sent me on this blog, taking me to someone else’s blog, that I was in for the ride of a lifetime.
I had no idea.
On March 1st, 2012 I read Julia Bascom‘s post ~ The Obsessive Joy of Autism. A post she’d written almost a year before, but I was only now reading. Her post begins with this, “I am autistic. I can talk; I talked to myself for a long time before I would talk to anyone else. My sensory system is a painful mess, my grasp on language isn’t always the best, and it takes me quite some time to process social situations. I cannot yet live on my own or manage college or relationships successfully.”
I had no idea.
I have read that post half a dozen times since I discovered it. And then I read her post just preceding entitled Grabbers. “The grabbers don’t believe that we can be happy or find meaning unless we are exactly like them…”
Read that again – “The grabbers don’t believe that we can be happy or find meaning unless we are exactly like them…”
As a parent I want nothing more than for both my children to find their way toward meaningful lives, lived with purpose. That they will then also find happiness I thought was a given. Or so I always believed. Does that mean they must be like me? Do I believe that their ability to feel happiness is reduced, lessened, not relevant, inadequate, inferior, if it looks different from my idea of what constitutes meaning and happiness? Can I let go of my preconceived ideas pertaining to happiness and what that means for anyone but myself? Do I even know what happiness is for me, let alone another?
I had no idea.
These were the questions that began to gnaw at me as I read Julia’s blog, Just Stimming. I urge anyone who is not familiar with her blog to read it. Just Stimming is beautifully written as well as powerful, poignant, evocative and for me anyway, gut wrenching.
Again, from her post Grabbers – (**Words highlighted in bold are mine, as in Julia’s post those words are italicized.)
“The hands are everywhere.
They’re at our chins. “Look at me,” with a face pressed in so close to yours that you count the pores until they force your gazes to meet.”
“…protesting just means you need to be grabbed more often, with harder and more insistent hands, until you realize that the way you move is fundamentally wrong, as wrong and deficient and disturbing and dangerous as you are, and if you want to be counted as a “you” at all you must let them grab you until you can stop your self.”
I had no idea and now I realize that claim begins to ring false, even to my ears. How was it possible to not have considered this? But no.
I had no idea.
“…Until you realize that the way you move is fundamentally wrong…”
The post ends with, “In the end it just comes down to you are wrong, and for that you must be punished. It simplifies to your body is not your own, but it is mine.”
I am about four years old, we are living in the first house I ever lived in. Our baby sitter, Mrs. Williams stands guard outside the bathroom where I have been told I will stay until I have had a “bowel movement.” I am sure she will not let me leave, but I cannot go to the bathroom on command. I feel anxiety course through my body, it is as though my entire being is encased in a net, I can breathe, but I am trapped. I sit staring straight ahead, wondering how long before she begins to yell at me. I am terrified of Mrs. Williams. She smells of antiseptic soap and wears a nurses uniform that crackles when she moves and those awful white shoes you see in hospitals that sound like she’s stepped in chewing gum when she walks. Her skin is pasty white and hangs from her body as though it were half a size too big. But mostly it is her eyes, partially hidden by glasses lens that do not conceal her anger and resentment. Those eyes hurt to look at because I see so much that isn’t said.
Finally I stand, tip toe to the sink, grab my drinking cup and fill it with toilet water then pour the water back into the toilet and flush. I place the cup carefully back on the edge of the sink and wait for Mrs. Williams to open the door, allowing me to escape.
“Your body is not your own, but it is mine...”
Julia’s blog was the beginning. It showed me a different path and urged me to follow it. I did. Along the way I have found countless other blogs and have even been fortunate enough to meet many of the authors of those blogs. Because of Julia’s blog I met my mentor and friend Ibby. Because of Julia’s blog I read E.’s blog The Third Glance, which I intend to write about in the near future. Because of Julia I have become a (I hope) better parent. Because of Julia I see the world differently. Julia’s writing opened my eyes. I wonder if any of us can ever really know how deeply our words can impact another. I don’t know that anything I write here can convey what this woman has done for me or how enormously she has influenced me and because of her influence the difference she has made to my thinking and life and by extension, my daughter’s life.
Julia’s writing gave me insight. She confronted me with her truth. She makes me think and rethink what I believe, what I think I know and she has made me question everything. This post doesn’t do her justice. How could it?
A year ago if you’d asked me what my single greatest fear was, I would have told you it was what would happen to my daughter when my husband and I both died. This fear was so worrisome, so looming that I often stayed up at night worrying. Well meaning people would reassure me that “things will work out, they always do” or “group homes aren’t so bad, many are run by loving, caring people”, but none of this gave me solace. My fear was the driving force behind my desperate pursuit of various medical interventions and treatments for my daughter. This fear, more than any other was what drove me to search for a “cure”. When I thought of my daughter’s future I saw one of those dark, formidable, gothic institutions, now used as set locations for horror movies. Once my mind had latched on to that visual image my fear became so overwhelming, my throat so constricted, my body so awash in terror I would literally shut down, like an overloaded circuit. Fade to black.
So what changed? I began to read things like this –
Amy Sequenzia, a non-speaking, writer, poet, Autistic self-advocate from her poem Feeling Good:
“Feel the warmth of another soul Ban the thoughts that block the light Refuse to hear what hurts, listen to the cry for help behind it
Well-being, feelings of unity We are all the same”
“If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate”, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.”
“But I’m not invisible anymore. I’m here, and I’m me, quirks, obsessions, passions, stims and everything else that makes me unique. Look out world, here I come.”
There were so many others, so many voices out there, somehow reading these blogs calmed my fears enough that I was able to begin dissecting them. I was able to pause, even for a moment, allowing me to ask, what is this? What is this fear really? And although my immediate answer was that these were fears based in very real, logical assumptions, I was able to see that they were just that – assumptions. They were still not reality. Not yet. I was also able to realize those fears were causing me to act in irrational ways. My thought that the fear was a healthy, natural response to what I believed to be the reality of the situation, prompting me to pursue all kinds of risky, unproven and untested “treatments” for my daughter’s autism was taking all of us down a dark, dark path. That fear caused me to behave differently toward her, but I couldn’t see that until I’d stopped and saw how my behavior toward her changed. When I was able to stop, just for a moment and examine the fear, the fear began to fall apart.
My fears were based in things I assumed were the inevitable consequence of what I believed my daughter was or wasn’t capable of. But this was not based in fact, I don’t have the ability to see inside my child’s mind. In addition my fears were clouding all the things she was doing that I ignored or couldn’t see or hear. Every single day, my daughter displays her vast intelligence. When I read the writings of Autistic people occupying every point on the so-called spectrum, I began to see that my assumptions, what I had assumed I knew and believed were not based in anything other than that. It was at that point that I realized I had a choice. I could choose to believe in her incompetence and the inevitable outcome this perceived incompetence would take us or I could choose to believe her competent, making that looming horror no longer a given.
As I wrote recently in a comment to someone, I chose the latter because to do otherwise and be wrong would be far, far worse. This is something I cannot risk or would be able to forgive myself for. But there’s another piece to this that is also important, and that is when we assume great things are possible, great things tend to happen. It’s human nature to strive for independence, to communicate, to connect, ALL humans want this. Given a little encouragement we can do things we never imagined possible, but given nothing or criticism we wilt, become sad and angry. My belief in my daughter will not change the very real challenges she faces, but it does and will help her far more than if I do not.
As I wrote yesterday’s post about Emma’s progress in the past year, I realized how much my perceptions and views have changed since beginning this blog. When Emma was first diagnosed I cycled through a series of emotions fairly quickly. Some, like guilt, grief and anger hit me with a violence that took my breath away. Others ebb and flow, while still others, like acceptance, came more gradually, but all of these things continue to change. My ideas about autism, what that means to Emma and to us have changed. I no longer believe there is a neuro-typical child named Emma hidden beneath guaze like layers of autism. A child who, if we could just find the magic thing that would remove the autism, would emerge, intact, speaking in beautifully, articulate sentences, a child who would suddenly converse with us as though all these years had been silent practice for her grand debut. I do not believe we can extricate Emma from her autism.
I have gone from thinking it was wrong for me to slap such a potent label on her, that it was kinder, gentler, more empathic to say – my daughter has autism – than to use, the more blunt and direct, “she is autistic,” to the question I now find myself continually asking – what would she say, if she could? I don’t know. Until she tells me, I cannot know. But I won’t stop trying to find out.
In my search to understand Emma, I have found voices, and there are dozens and dozens of them out there, autists who, now in their 20’s, 30’s, 40’s and 50’s have blogs where they articulate what many cannot say with spoken language. These are the so called “high functioning” autists who can communicate, some not verbally, but who have found ways to communicate through typing and other forms of communication. Their opinions, their voices, often poetic, at times angry, despairing, brutally honest, always insightful, are making themselves heard through their blogs. Finding these sites has been akin to learning there is a vast alternate universe. There is so much I did not know, do not know, but want to learn. Over the course of the past eight years, with the sole intention of helping my daughter, I have done almost every single thing many speak out against. I didn’t know. I thought I was fighting for Emma. I thought my focus on a “cure” was a good thing, the noble thing, the thing that would release her from the bondage of autism. It never occurred to me that my focus could be perceived as a kind of bondage in and of itself. By the way, I am not beating myself up over this, or more accurately am trying hard not to, but am doing my best to listen and learn.
I know I’m wading into tricky territory here, with many differing opinions about “cures” and how that word is negatively perceived by those on the spectrum, and I don’t want to get into the semantics of it, only to suggest it is a dialogue that is important. It is a dialogue I am trying to understand. I want to understand. One I hope I am coming to understand.
The abuse, the prejudice, the cruelty all of these austists have endured is staggering. One of my favorite blogs, by the incredibly talented Julia Bascom, called Just Stimming is filled with such pain. She writes so beautifully and with such honesty, I read her words and feel overwhelmingly grateful for her voice. E. is another such voice with her blog, The Third Glance. Then there’s Landon Bryce, who’s blog ThAutcast is peppered with youtube videos of himself talking. Provocative, passionate, he is always interesting and someone I would love to have a conversation with. There is LOVE-NOS, a group blog with three authors sharing their views and thoughts, one of whom is Julia Bascom. Another group blog, Wrong Planet describes itself as – “a community designed for individuals (and parents/professionals of those) with Autism, Asperger’s Syndrome, ADHD, PDDs, and other neurological differences.”
The point is, these sites are educating me in ways I could not have imagined.
Someone named Kathryn commented on another blog: “Here are two broad categories of parent attitudes about autism. (Others may exist, but these are common and pertinent.)
1. I want my autistic child to function the best he/she can, and will do anything I can to help him/her overcome the difficulties posed in his/her life by autism.
2. I want to have a normal child and will do anything to get rid of this autistic child’s autism, because then I’ll have a normal child again.”
I aspire to be the parent described in #1.
For more on Emma’s journey through a childhood of autism, go to: Emma’s Hope Book