For 4 years now, April has been ‘Autism Awareness’ month, with April 2nd World Autism Awareness Day. You might have heard about the ‘Light it up blue’ campaign established by US organisation Autism Speaks, to raise awareness (and money) for autism. This sounds like a noble idea. If you dug a little deeper however, you’d find a lot of critique about this project and for a range of reasons. Leaving the whole argument against Autism Speaks aside (because there are already many, many erudite explanations of what’s wrong with raising money to research a ‘cure’ for autism), I want to look at the concept of awareness and propose that although it’s important, it’s only half the story.
When our son was first diagnosed as autistic, we went on a rapid journey of raising our awareness of autism. We were pretty clueless. Our knowledge wasn’t really knowledge at all, but turned out to be a very narrow understanding of what autism looked like. We’d had no reason to look beyond our stereotyped understanding and to explore the myths that we’d adopted through exposure to mainstream media. We sought to educate ourselves so we could better understand what this whole autism thing was about. Increasing your awareness about anything is a pretty good idea. Learning more is never a bad a thing in my opinion. We learnt that autism is a term that can be applied to a whole variety of behaviours. We learnt that some autistic people speak and some don’t. We learnt about sensory overload. This was undeniably helpful, but we started to notice a trend. Most of what we were learning was coming from non-autistic people. We read books, research reports and blog posts. We visited ‘experts’ from the various professions that work with autistic kids. And although we learnt a lot, we also felt the weight of the perspective that they offered. Awareness acquainted us with the ‘limitations’ and ‘symptoms’ that our son had. We now had a name to match some of his behaviours, but somehow this awareness left us feeling pretty heavy. For example, we could now name his repetitive noises and movements as ‘stims’, but we listened and watched with unease. In short, being aware of autism didn’t really help us beyond having words to match with behaviours.
When we became aware that we were also autistic, something shifted. We reached out and connected with the larger autistic adult community. We stopped searching the ‘experts’ and started looking for the perspectives of autistic adults. We found that autistic adults don’t celebrate ‘Autism Awareness’ day or month. Instead, they started their own month of April celebrations under the banner of ‘Autism Acceptance’, in recognition that awareness will only take us so far and may also take us in a direction that is unhelpful. Awareness provides us with information. Acceptance is a whole other destination.
Let me tell you about what it feels like to be accepted as autistic in the hope that it might give you some insights into why acceptance is the higher goal. My mother has listened to me many times over the years since my son’s birth as I’ve shared with her the joys and challenges of parenting him. When my son was diagnosed as autistic, my mother came with me on our awareness journey. She hungrily read every article I sent her, she researched for herself, she asked questions and supported us emotionally along the way. When I told her my husband was autistic, she made space in her heart for this news, expressing how wonderful it was for our son that he had such an excellent role model in his father. Since my own diagnosis, I’ve struggled with whether or not to tell my mother that I am also autistic. Although she reacted so supportively to the news about
my husband and son, I just wasn’t sure that she could do the same for me. After all, autism in women looks very different to autism in men, and I feared that she would either not believe the diagnosis or somehow reject this part of me. I worried that this would be a burden for a woman in her 70’s who might prefer to hold on to the ideas she had already formed about me over the last 43 years. I couldn’t have been more wrong.
In a busy eatery at lunch time, I was unable to contain the news that I’d sat with for some time and I blurted out that I was also autistic. My mum paused briefly, looked directly at me, and said she wasn’t surprised. Her words were a comfort but her look and the feeling that washed over me will last a lifetime. When I think about that moment, I’m very aware that what I felt was the clear stillness of acceptance. Everything slowed. Our eyes connected. I felt safe in the bubble of her unconditional love. I felt heard. Seen. Content. Accepted.
I also know that I’m very lucky to have the acceptance my mother has offered our family, as many people are not greeted so positively when they share the news that they or their children are autistic. Some are ignored, as if their moment of disclosure never happened. Some are not believed. Some are shunned or abused. Ultimately, this leads to a distancing and for some, the gulf becomes too wide to ever again breach.
My hope is that my son can feel accepted as he makes his way through life. It’s a much deeper experience than simple awareness affords and the effect is powerful. With my mother’s acceptance for my son, for my husband, for myself, I feel as though there’s an invisible safety net underneath our family that truly supports us and deeply knows who we are. When I think of this, I feel like I can do anything. I feel like there are no limitations, only the occasional barriers. With my mother’s love and acceptance of me as an autistic person, I feel like I can leap the hurdles I need to, or take comfort in her love when I can’t.
This April, my family celebrates Autism Acceptance, in the wish that all autistic people and those that love them can truly accept who they are.