To piggy-back on to Richard’s “Shift” post; mine began with a slight tremor in the form of a book. Autism and Representation Edited by Mark Osteen. That book opened my eyes to so many things, but most importantly it introduced me to the words, the voices and lives of many adult autists. After reading Autism and Representation, I started looking for other writings by autists.
While I was doing all of this, my friend, Kelly (I consider her my friend, though we have never actually met, nor spoken) commented on one of my posts with a link. I went to the link, (written by an autistic adult) couldn’t believe what I was reading, read everything on her blog and began reading all the blog links she listed. From those links I was introduced to dozens more and finally mustered up the courage to respond to someone’s comment on one particularly controversial post, written by a mom of an autistic child. For me, someone who was now showing up very, very late to the party, I was fascinated by the comments written by autists much more than the post itself. Being the compulsive and thoroughly obsessive person that I am, I systematically went through every single comment, madly clicking on each and every person’s link and began reading their blogs. This was the beginning of what turned out to be the education of a lifetime. Wow!
One of the links led me to the WrongPlanet where I read the interview with Henry Markram about his Intense World Theory of Autism. His theory confirmed everything I felt I’ve known about Emma, but that many specialist said wasn’t true. On the contrary, the common thought about autists is that they lack empathy and therefore feelings. Finally I was reading something that resonated. Markram’s theory has opened up another world to me. I have always known Emma was very intelligent, I have never doubted that, ever. But his theory of intense feelings and pain memory and how this causes the child to withdraw… well it was like being told you really are seeing what you thought you’d been seeing all these years.
Up until this last week, my fear of what the future held for Emma was something I could not begin to describe. Everything about her future filled me with terror. Every birthday marking another year gone by, filled me with trepidation. Each time we had to teach her to state her correct age, I gulped down massive amounts of fear. The fear was so great I could do nothing other than tamp it down. I kept a firm grip on it. The minute I felt myself sliding into it, I pushed myself back out. That takes a lot of energy. It takes up a lot of space. I didn’t even know I was doing it until I began reading these blogs written by autistic adults. Adults with a wide variety of issues and challenges.
It’s not as though I read these blogs and thought – oh isn’t it great how cheery and easy everything is for them. Because it isn’t, far from it. But somehow, reading about individual lives, feelings, struggles made it less frightening. Reading the outrage, the cries to be heard, the desire to be respected and treated as such, the ridicule many have endured, the bullying ALL have endured, made it real for me in a way that I could not have anticipated. And in doing so, the abject, nameless, all encompassing fear I have tried so hard to shove away, dissipated, because there is this community that is like her, a community of people who understand her, who are fighting with courage, tenacity and determination to be heard. They are fighting and speaking out, many with the hope that one day Emma and those like Emma who are just being diagnosed now and those yet to be born, won’t have to. I am profoundly grateful to each and every one of them. If we want autism awareness, these are the voices that need to be heard. It is up to us to listen.
For more on our journey through Emma’s childhood of autism, go to: Emma’s Hope Book
I have such great respect and admiration for you…..I feel honored to be your friend…..and I consider you a friend as well:) I love how a shift in perspective can mean a world of difference. Fear is such a strong force, but the manner of which you faced that fear through reading NOT from a therapist or doctor’s perspective but from those who are autistic, those who have endured all that you spoke of, those who not only endure but thrive in the beauty of their written word and their own voice…well that is amazing. Emma is so fortunate to have you and Richard as parents. Your love for her is what is stronger than an.y and all fear, and it shows Thank you again for sharing this love with others, for inspiring me.
Kelly! Good, good friend and fellow parent, you gave me such a gift when you sent that link. I remember the day you sent it and going to the link and opening it and being so astounded. I wondered then what others did you know about, how had you come to it, have you found others? I am so dreadful with computers, but I intend to redesign this blog to include a blog roll with links to some of these sites I have found, thanks to that first link you sent. I am following about twenty blogs now and comment on them regularly (that’s a whole other post!). But I do. I feel I have found a different world and it gives me such hope for our children. Thank you for being my friend, it means everything to me.
There is no better feeling when we are scared to learn that we aren’t alone…someone, somewhere understands. Then to find out there is a WHOLE community that understands….well that is just an awesome feeling! 🙂 I kind of got my A-Ha moment a few years ago at an state autism conference. I am going to be honest here so if I offend anyone, I apologize ahead of time! I was sitting in a room listening to a speaker with 100’s of other autism families and I heard this all too familiar noise…a verbal stim of sorts if you will. I recall the whole room going quiet, the stares that started to dart toward the voice making the noise and the overall uncomforableness that people began to feel…..I thought this odd as we should have all been very familiar with all types of stims but it made people uneasy. I myself was a little curious who was making the noise so I looked over to see a young, handsome man and his mom. If not for the size of him, he was my son. Same demeanor, same verbal stims, same gestures and actions….my son in 15 years. I drove home that night crying all the way….as accepting of autism as I had tried to be, I did not want this type for my son, not this severe. The next day, I attended a workshop at the conference on facilitated communication. Some are skeptical but it was pretty much the only session geared toware non-verbal kids so I went. In came the handsome young man from the day before and his mother. The young man sat at the front of the room with his faciliator. Then she proceeded to read aloud his 6 page essay which blew me AWAY!! Articulate, intelligent, heart wearming, in depth were all words to describe what this young man had written. Again, I left in tears but for VERY different reasons……I was so ashamed that I had compared my son to this young man and begged God not to let him be like that. How I had underestimated just what type of person this young man was…how much he had to offer. Then realizing I had did that with my own son. My heart hurt and was so heavy that day. I will never again make those types of assumptions/judgements about anyone… autism or not. My favorite t-shirt says something like, “Just because I can’t speak doesn’t mean I don’t have anything to say!” From that day on, I viewed Brett’s autism differently. It was in fact a gift in many ways. Do I hope someday he can speak, yes…but I have learned that his autism is who he is in so many ways. I wish him to be the healthiest he can be and achieve all he can achieve just like I do for my daughter who does not have autism. These young adults in their blogs have so much to offer the community as a whole! Embrace diversity! I thank them too for the awareness that their sites have brought to many! Blessings~
Becky – this is really beautiful. Thank you so much for writing it. Yes! Yes! Yes!
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