There’s a blog I love, written by E. called The Third Glance. I found it last winter. Written by a PHD student, E. describes her life, her passions, her studies, while detailing her thought process while socializing with friends during an afternoon at a café or memories of growing up with abusive parents who didn’t understand her. E.’s compassion for humans and their neurological differences is striking as one considers the stigma she experienced growing up Autistic. The Third Glance was one of the first blogs I found in my search for Autistic Adults. E’s compassion and kindness shines through all her posts no matter the subject. Her determination to give people the benefit of the doubt was something I was astonished by, particularly during those first few months of my discovering Autistic blogs and reading that so much of what I’d done was not as altruistic as I’d believed.
When Em was diagnosed, the words “Autistic Adults” were not uttered. Ever. We heard about how imperative it was to immediately implement early intervention, we were shuttled off to get an “independent diagnosis,” we were advised to start investigating ABA therapy, we were inundated with ABA therapists, speech therapists, occupational therapists, a social worker came to our home once a week, team meetings were held regularly, we were trained to continue Emma’s ABA therapy after the last therapist had gone home. We were advised to put Em on a gluten free/casein free diet, we were encouraged to read the thousands and thousands of pages of material thrust at us from a wide variety of well meaning and well intended people.
In that first year of Em’s diagnosis, I was well versed in various theories regarding gut issues, lead levels, mercury levels, toxicity in our food and water, and I could reel off at least six different unpronounceable ingredients in vaccines. I’d read at least 30 memoirs written by parents of Autistic children as well as books with titles such as A Parent’s Guide to Autism: Answers to the Most Common Questions, The World of the Autistic Child: Understanding and Treating Autistic Spectrum Disorders, Handbook of autism and Pervasive Developmental Disorders and Biological Treatments for Autism and PDD. I’d taken Em to cranial sacral therapists, homeopaths, lead specialists, developmental pediatricians, nutritionists, allergists and a DAN (Defeat Autism Now) doctor. I knew about ABA, VB, RDI, PECS and DIR therapies. I read and reread Catherine Maurice’s Let Me Hear Your Voice with the same dogged, determination and devotion evangelicals read the bible. I knew about sorghum flour, rice flour, garbanzo bean and fava bean flour. I honed my cooking skills on perfecting a gluten-free/casein free birthday cake for Em’s third birthday with platters of tasty GFCF finger foods, which Emma refused to touch, let alone sample.
Autism, seemingly overnight, had become my focus. I was set on fighting it. I was engaged in nothing less than a war. My weapons were my determination, my tenacity, my stubbornness and my love and devotion for my daughter. Everything else came to a screeching halt. Everything else fell into line behind my research. I was on a quest. To my way of thinking, I was on a mission to save my daughter’s life. When my husband, understandably alarmed by the fervency with which I threw myself into my research, suggested I was spending too much time searching, I was furious. I railed at him, enumerating all the things I was doing with the sole intent of saving our daughter. I was furious that he seemed unable to fully understand the battle I was waging. It never occurred to me there was another way. It never dawned on me I was battling windmills. That Autism was the enemy, something to be vanquished, defeated and destroyed, I did not question. I didn’t have time to question, I was too busy dealing with the Board of Education, therapists, Doctor’s appointments, tracking down every “cure,” and baking foods my daughter wanted nothing to do with. Every time I turned around someone was sending me a link to a new “cure” a new treatment, a new therapy, a new “miracle worker.” Countless people would begin a conversation or email with, “Have you tried…” ”Have you heard of…” and I would grab a pen and begin taking notes. Doggedly I pursued each and every tip. Determined not to leave a single stone left under turned, my days and nights were filled. I was busy. There was no time for calm contemplation, there was no time to sit and consider the path I suddenly found myself.
The Seven Year War.
And then… what happened? What changed? Everything. I began to question the “truth” about autism. I began to question the dogma. I began to question the “facts.” It was inevitable, I suppose when you read as much as I do. But the single biggest change occurred because I found Autistic Adults like E. I’ve written about this before, ‘here‘ (the post where E. first reached out to me in the comments section) and again ‘here.’ I won’t go on about that process, except to say this – there is something about the immediacy and the interactive quality of a blog that no book can replicate. In addition, a blog written by someone who is Autistic is far more interesting to me than anything I’ve heard from researchers, specialists, therapists, teachers, doctors because Autistics are talking about their lives, it’s not a theory, there’s no speculation.
Want to know about Autism? Ask Autistics.
Thank you E. for reaching out to me. Thank you for generously holding out your hand to me in kindness and friendship. Should all parents be so fortunate as I have been.
A quick aside, E. was also one of the creators of the Autism Positivity Flash Blog (see badge on right side of this blog) where a group of bloggers reached out to hundreds of us asking that we write a post in answer to the google search words “I wish I didn’t have Aspergers.” If you haven’t gone to that blog, do. It’s a veritable who’s who in Autism blogging by Autistics and parents coming together to support someone on the spectrum.