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