It’s hard for me to remember a time when I wasn’t aware of autism.
Eleven short years ago, I had no idea what autism was. I didn’t know anything about raising a child on the spectrum, or even that there was a “spectrum.”
Within six months of my son’s diagnosis – which came just before he turned three years old – I had shifted from almost total ignorance into a state of hyper-awareness. It’s like when you get a new car, and suddenly you start to see that same make and model on the road everywhere. Before you had one, you didn’t notice how many of them were out there, in your neighborhood, every day. Now, you wonder how you never saw so many of this car before. Some are in a different color, with slightly different features, but they are all immediately recognizable. Because you’ve got one now too.
In those early months after we received our son’s diagnosis, I gobbled up medical, educational and therapeutic strategies, drowning myself in information. I rushed to every conference and workshop put on by our local chapter of the Autism Society, so eager to master this new field, and uncover the clues that could help me connect with my child.
One of the best things that those conferences gave me was the opportunity to listen to autistic individuals themselves explain what life was like for them. As a “newbie” parent of a non-verbal three-year-old boy, I was inspired by and in awe of their incredible accomplishments. Here were men and women with autism leading successful lives. Here were witty, imaginative people who could communicate, interact, and describe in their own words what it was like to be autistic. Here was a group of people who got it.
All of these individuals offered me a potential window into what my son might be thinking and feeling, and I took copious notes. Lectures by national speakers who had such a following I couldn’t believe I had never heard of them before. Presentations by local autistic educators who, since they shared their clients’ diagnoses, divulged secrets for effective interaction that other therapists often miss. And, my favorite, panels of intriguing young adults on the spectrum [some verbal, some using communication devices] who offered first-hand accounts of what it was like to be “special” in our public school system (Hint: it wasn’t good).
Whenever I came back from one of these conferences, or read a book or article by someone on the spectrum, my own interactions with my son became more patient, more kind. At first, these individuals’ personal stories offered me some “maybes” to explore with my son. If this is what someone else with autism feels, maybe my son is feeling that way too.
Maybe, like this guy, my son is irritated by the particular pitch of his teacher’s voice.
Maybe, like this young woman, this food preservative gives my child headaches.
Maybe, like these others, our son will understand language better when we write things down, because maybe he also finds that verbal words float by too fast to be caught, but written words stay still, solid.
This early exposure to autistic individuals quickened my transition from “awareness” to “understanding” (a journey which is still ongoing, by the way). Although I still spent the first few years as a new autism parent in a frenzied panic to do everything I could to “rescue” my son, the decisions I made for my child were tempered by the words of those adults with autism who challenged my preconceived ideas about disability. And, even after I stepped back from that extreme level of hyper-awareness, stopped going to every conference, and allowed myself and my family to just live life, I keep coming back to the lessons I learned from autistic people themselves.
Their stories of being victims of bullies at school warn me to take every opportunity to educate my son’s peers. Their memories of feeling unloved and misunderstood even within their own families remind me that in my quest to alleviate the negative aspects of this disability, my attitude, my language, even my stress level matters.
They have shown me that it is not enough to argue for an inclusive environment for my child in his school and in our community; to be a strong advocate, I must practice inclusion in my own life more fully, and show through my attitude and my actions that I value and respect people who experience the world differently than I do.
They have taught me that it is not enough to model acceptance and speak positively about my son to his teachers, peers, and family; to be a caring advocate, I must offer genuine praise and encouragement to my child directly – and much more often than typical parents should – because he battles everyday to squeeze into a world in which he doesn’t quite fit, and he needs the comfort and safety of a home life that unconditionally molds to his shape.
As my son reached adolescence (or perhaps because of that), I began to listen to one message from these autistic mentors that I had earlier disregarded. Many autistic presenters and writers speak of their autism not as a deficit, but as an integral and positive part of their identity. They are, I thought, mainly speaking from the “higher functioning” end of the spectrum, so I had a hard time envisioning how those ideals could align with my son’s own experience. While I wholeheartedly support their efforts to broaden society’s acceptance of those who are not “neuro-typical,” this message of positive autistic identity is sometimes hard to grasp, especially during those times when my son is lost in pain and frustration, or when he is at risk of hurting himself or others.
Lately I have been encouraged to hear more autistic people – who are non-verbal or semi-verbal (who look a lot more like my kid) – who express similar sentiments of pride and positive self-awareness. I want my son to be proud of who he is, and I want to help create a community in which he can be successful and be himself. I am still learning how best to mitigate the severity of my son’s autism while safeguarding and bolstering his self-esteem.
Since I launched this blog last April – beginning with this post in the spirit of positive Autism Awareness – I have reconnected with the autism community, and have rediscovered the voices of these autistic mentors. They have gained my attention all over again, and their voices continue to shape my understanding – not just of my son, but of what it means to be a true advocate for someone who cannot yet speak for himself.
I still have a lot to learn. But I am listening.
I am hoping to add a page of useful links to this blog soon, but here are a few pieces I believe are especially worthy of attention:
1. A movement by autistic self-advocates and their supporters has been gaining traction over the past few years to counter the prevailing negative images during Autism Awareness month – it is a strong effort to reframe awareness into positive action and acceptance. Read about it here: http://www.autismacceptancemonth.com/about/
2. My new favorite autistic blogger is at The Third Glance. She has been posting some great pieces this month about acceptance, and if you go to this link here, you can read the meaning of her blog title – it’s a beautiful, spot-on description of how easily people who seem “different” can be overlooked or discounted, and how giving someone that “third glance” is well worth it.
3. I have found a few parent-bloggers who have written masterfully about these issues, and who are clearly much farther along in this journey than I am. Here are two:
* A guest post on Neurotribes by the amazing activist Brenda Rothman, with an introduction by Steve Silberman – this really nails it: http://blogs.plos.org/neurotribes/2013/04/01/what-i-learned-from-my-autistic-son-a-guest-post-by-brenda-rothman/
* Another strong advocate, Ariane Zurcher, writes at Emma’s Hope Book – many fantastic posts here, including this one, that also has many links to autistic bloggers and writers: http://emmashopebook.com/2013/04/03/autism-awareness/
4. Babble.com, a parenting site, just compiled their list of the Top 30 Autism Blogs for 2013, and it was heartening to see the inclusion of quite a few that are written by autistic people themselves.