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
Emma during gymnastics last Sunday
Count me in the #1 category too.
I do and thought of you as I wrote that. But beyond that, you are a devoted dad, a dad who listens, who encourages me to listen, who has the courage to hear things even when you don’t agree, who wants nothing more than to see both your children grow into confident, fulfilled and kind adults. They have such a great role model in you, and I, such a wonderful husband.
And I aspire to being a #1 grandparent, because Emma obviously is a #1 grandchild.
I am just in awe of all of you in this wondrous family. Thank you.
Barli! I hope you’re well. So sweet of you.
And Mom, can’t wait to see you! Emma has been counting down the “sleep, wake ups” for more than two weeks now! XX
I found The Evolution of a Perception via another article while searching for a related topic. Thank you for your thoughts on the topic. I will hyperlink to http://www.emmashopebook.com/?p=2917 in my upcoming article as some of the points you talk about right here are on a similiar idea. Thank You.
Let me start by saying that I’m a 22 year old Autistic adult. I stumbled upon your blog through Jo Ashline’s Evolution of an Apology post.
Thank you. Thank you so much for this post. It was one of the most beautiful things I’ve read today. It made me so incredibly happy and hopeful, just to see how much thought and honesty is in it. It is so wonderful to see a parent take the journey you have taken, and to pause and listen to those who have lived the journey. So thank you. And you are definitely a #1 parent. The best kind of parent. I keep thinking “communication happens both directions” – what you do and say means something to you, but it might mean something entirely different to who you are saying it to. Trying to find that balance, so that your actions match your intentions to the person on the receiving end is incredibly difficult, but so so important and wonderful. Just making the initial realization that your actions might not translate the same way to the person on the receiving end and trying to find ways to make it so they match, is the most valuable and wonderful thing you can do as a parent to such a special kid. So thank you for taking that step and that risk. The world is a better place because you have. 🙂
Apologies for the shameless self-promotion… I only am adding this bit because I saw on your comment on Jo Ashline’s blog post that you are looking for blogs by Autistic adults. I would like to point you to mine, because I think I’ve written a lot that you might enjoy reading (in addition to the two I’ve linked to below). In particular, a pair of posts I wrote about my parents and how they treated me growing up, the first titled “Growing Up Autistic: on Nature, Nurture, and Abuse” (URL: http://thethirdglance.wordpress.com/2012/02/15/growing-up-autistic-on-nature-nurture-and-abus/) and the second titled “Things my parents did RIGHT” (URL: http://thethirdglance.wordpress.com/2012/02/21/things-my-parents-did-right/).
And by the way, I read your piece – Growing up Autistic: On Nature, Nurture and Abuse – you were one of the people I was referring to when I wrote about the harrowing stories of abuse. Your piece, written with such elegance, with such brutal honesty, it took my breath away. I am so happy, so pleased you are out there writing, talking, letting others know, reaching out. Thank you again for reaching out to me.
E, thank you so much for reaching out to me, this letter means a great deal to me. I know your blog! I found it from your comments on Jo Ashline’s blog. In fact I have read BOTH your pieces that you sent links to. When I saw this comment from you I felt terrible that I forgot to include you in the list of blogs I’ve read and really like. I love The Third Glance. About three or four days ago I sent the link to your piece – My Cat is My Hero – to my husband. When I told him you’d left a comment here and told him you were the one who wrote that, he said, “Oh I loved that piece!” How funny is that?
So happy to meet you! Really, this made MY day!
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This is beautiful. E from The Third Glance sent me over to read it, and it makes me happy. We’re so glad you’ve joined the Autism Allies. Emma is lucky to have you.
Thank you A.for saying this. It means a great deal to me. I wish I’d gotten here sooner, but am grateful to have gotten here at all. E. and others like her have helped me. I owe so much to those autists who have willingly and generously shared their thoughts and feelings with me. It’s made such a difference. Thanks again for this comment.
Thank you! I am looking for ways to let me daughter know I understand her intended conversation over her actions and words and then teaching her how to express that in ways others can understand in the way she meant it. It will be extreamly helpful to her life. And to help her understand why doing social typical things and manners will help you make friends and then giving people the chance to get to know her and her beautiful kind heart. Your point of view and all the helpful links to information you have already found is sooooooooooooooooo helpful! Thank you!!!! From every part of my heart, Thank you!
Oh Barbara, you are so welcome. I am just now setting up a Facebook page – http://www.facebook.com/EmmasHopeBook?ref=tn_tnmn as a place where any of us can go to support one another. I have no idea if this idea will take off, but have been wanting a place like that. Thanks so much for reaching out.
oh dear I sent you the wrong link.. Here it is. http://www.facebook.com/EmmasHopeBook
That sounds GREAT! ❤
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Nice post. i like it. this is helpful for me.