Bloggers, Writers, Autism and a Huge Amount of Hope

emmashopebook.com | Nov 13th 2012

When Emma was diagnosed with PDD-NOS (pervasive developmental disorder – not otherwise specified) in 2004, I was lulled into believing it was a temporary condition, nothing that a few years of therapy wouldn’t resolve. I saw it as a kind of throw away diagnosis, not exactly full-blown autism, more like a mild version of something that resembled Autism, but wasn’t. Kind of like a bad cold, not exactly a bacterial infection requiring antibiotics, but troublesome never-the-less and we’d have to ride it out. Besides, I reasoned, just because many of Em’s behavior looked autistic-like, seemed autistic-ish, she probably wasn’t autistic because, well, no one really understood what autism was and so how could she be labeled something that no one understood or really knew what it even meant? Or so my thinking went. During this initial period I kept my eye out for any Autistic adults I could find, just in case, you know, she really was autistic, I wanted to know what we might expect. I found none and concluded that since I couldn’t find any, there must not actually BE any to find.

Still, just on the off-chance I was somehow wrong, I kept looking. Every now and again I’d find someone, read everything they wrote or said and conclude that my daughter wasn’t really like them or wasn’t like them enough to give me much hope that they were good examples of what she might be like later in life. (In retrospect, since Em wants to be a singer, I should have been looking for performers who are autistic, but even so, would, most likely, have come to the same conclusion.) By the way, I have never met a neurotypical adult who seemed like an adult version of my neurotypical son, but this thought didn’t occur to me for a great many years. Despite all of this, my search continued.

In 2005 Em’s PDD-NOS diagnosis officially became “autism”. As time went on and my thinking continued to change, Emma remained Emma with all her “Autistic-like behaviors” very much in place and I continued to grapple with what this meant. I wasn’t one of those parents who understood that regardless of her neurology, she was who she was and it was all good. I bought into the autism is like cancer idea, and therapy was chemo. (This idea was very popular back in 2004, though I hope it has waned.) It took me awhile to question this thinking and it took me even longer to see how these beliefs made any “therapeutic” program somewhat reasonable, because, after all, nobody signs up to have chemo and talks about what an enjoyable experience it is. The idea that Autism is NOT cancer, that this thinking in and of itself leads us down a very dark and dangerous path was something I didn’t come to until much later.

Now fast forward to this morning. This morning I read a terrific post, The Princess, Her Socks and Her Late Pass on a wonderful blog I’ve begun reading regularly by Aspie Writer called, Twirling Naked in the Street and No-one Noticed, (love that title) which she describes as “A blogged book: Growing up with undiagnosed autism”. Reading her post about how she hated wearing socks, (so does Emma) how the fabric bunched and the seam on her toes hurt and how the socks had tiny rocks in them that no one else could see or find, kept reminding me of Em. Aspie Writer recounts how she was always late to class and keeps saying over and over, “I have to see Mr. Hiler for my late pass.” It is a wonderfully written description about a baffling behavior. She does such a terrific job describing her actions and words that they made total sense to me. Not only was I able to identify with her thinking, it gave me a little glimpse into some of Em’s seemingly baffling actions or repeated sentences.

And I was reminded (again) of why reading blogs by Autistic people is of such vital importance to me. It’s not because I think to myself, oh Emma is going to become this person when she’s an adult. I don’t assume that because Aspie Writer is married, a mom of 3 and a wonderful writer this will be Emma’s future. I haven’t met a single adult, autistic or otherwise who seems to be just like either of my children. How could I? There wasn’t an adult version of me when I was a child and I’m certainly not an adult version of anyone else’s child. It’s kind of a ridiculous idea when you stop to think about it. And yet, that’s what I wanted for all those years when I was searching. I wanted to find someone who seemed just like Emma was. I wanted this desperately because I was so fearful of her future. Yet, all those autistic adults who are not exactly like my daughter are the very reason I am no longer fearful and why I have so much hope.

Blogs, both the writing of this one and finding those written by Autistics have changed my life. Blogs are a slice of life, immediate and interactive. I can read a post and “like” it, comment on it, even though I may or may not get a response from the writer. I can then tweet the post out, share it on Facebook and engage in a dialogue with the writer if they care to respond. The immediacy of blogs is compelling, engaging and makes the reader feel more apart of than when reading a book. Books are wonderful too, but they’re different. They do not have the interactive element to them that makes blogging so wonderful. Blogging is very much about “us”. We, whether as a reader or writer, have the opportunity to become part of the process, a part of “them”. Another aspect of blogging is – anyone can blog. You don’t need an agent, you don’t need to even write “well” (though there are many wonderful writers who also blog), you just need to want to write. So you have a great many people who may never have bothered to look for an agent or publisher, who are writing and because it’s a casual writing form, you also find some amazingly beautiful blogs written with honesty, unedited, raw and complex.

To all the Autistic people who are sharing your stories, your words, your lives, whether by commenting or by having a blog of your own or both, here’s a very loud and heartfelt thank you! You are making a difference. You have changed my life. How does “thank you” even cover the enormity of that? It doesn’t.

Emma – 2003