As we come up on April 2, which is National Autism Awareness Day, I thought I’d write a post about my experience with this day and what it means to me now. Why my label of being actually autistic is important.
There are lots of posts out there about this day and many people’s experience mirrors my own, but I feel the need to tell my own personal story about it.
I often get the response when I tell people I’m autistic, or my son’s autistic, they don’t believe me at first because we seem “so normal.” I also often get the follow up that they believe labels aren’t all that important. Which is fine for some people, and I fully accept that labels aren’t important to them.
But the label is important for me.
When my son was first diagnosed with autism at 3 we actually felt relief. We saw things in him that many others didn’t seem to and this explained so much about his babyhood and personality as he grew.We were strongly advised to start early intervention so his “diagnosis could go away someday.”
I’ve learned a lot since that time and the brutal truth is that this never goes away. We just learn to mask the symptoms. If his diagnosis were to go away in a clinical sense then it just means he’s masking his symptoms to a point that it’s not noticeable. I can tell you from experience that this comes at a cost of depression, anxiety, and even PTSD symptoms.
At first I was given the website of Autism Speaks in order to help me understand some terminology, to help organize his therapy and IEP into folders, and a lot of verbiage about learning to accept your child and grieve if you need to.
I felt no grief about his diagnosis but continued to follow their site and read various blogs written by parents of autistics to see how they might handle meltdowns, sensory overload, and other things. I wanted to learn more about my son so I could be there for him as best as I could.
It all led to early intervention. Or finding the “normal” child behind the autism. You’re apparently supposed to handle your child’s autistic behavior by forcing them to be someone they’re inherently not. Or hoping they’ll change into someone their not. I fully accepted who my son was and is. He’s a very special and intelligent little human that I look forward to seeing grow and change over the years. The only reason we even sought the diagnosis was because of his issues with eating. We wanted him to thrive as best as possible, and in order to do that he needed to eat.
Then April rolled around and I fully embraced the Autism Awareness Day that year. I bought a shirt and puzzle piece from Autism Speaks and proudly wore blue on Light it Up Blue day. My son doesn’t present as being “overly autistic” to most and was given a label of high functioning. My hope during that first April with my son’s diagnosis was to bring the awareness that autism doesn’t always look like what we expect.
Then I had an old friend from high school that asked directly about my feelings on Autism Speaks, seeing various posts about how horrible they are. I went into high research mode (you could probably call it obsessive). I learned they’d recently removed “cure” from their verbiage. They still had no one on their board or anyone working for them with autism, and one woman was even turned away from a job with them because she required special accomodations for her autistic son’s daycare schedule.
I also learned that the reason they use blue for Light it Up Blue is because of the long standing idea that girls don’t have autism.
I began to obsessively read posts written by actual autistics. Or parent’s of autistic children who had a viewpoint that seemed completely opposite of most of the posts of Autism Speaks. Viewpoints much like my own, that my little human was autistic but worth all my love and time, and that I didn’t need to find that “normal” kid underneath because that message sends the wrong type of love for him that I have. If all your child hears from you is how to act more normal, then they’ll begin to believe there’s something inherently wrong with them. This is just so far from the truth I don’t even know where to start.
I found factual information about what it feels like to be autistic, how autistics mask in social situations, and how we need acceptance, not awareness.
The more I read, the more I felt certain I am autistic.
I received my official diagnosis last year at 33 years old. All I felt at that point was a huge lifting in my chest and a relaxation of my shoulders. All my years of not fitting in, of trying so hard to be like all the other kids, normal teens, normal twenty year olds, and then moms I knew.
As a child I had been labeled as “gifted.” Speaking very precisely with a huge vocabulary from a young age. Knowing my address and phone number before I was 3. Doing 200 piece puzzles at 3. My reading comprehension in 3rd grade was at an 11th grade level. I had a skill for math but when I tired to show my work my teacher’s often removed points because I couldn’t always show my work in the way they expected me to, since it appeared I was “cheating” or “skipping steps.”
There was also the downside of my being autistic. Screaming bloody murder the first time it rained on me. I still hate the rain. Little pinpricks of needle sharp pain all over. Feeling a buzz noise of pressure behind my eyes whenever I’m in the presence of fluorescent lights. Needing hours to recoup after a visit to a store, which left me baffled by these people that actually enjoy shopping. Hating the feel of jeans. Turning my socks inside out so I don’t feel the seams. Cutting all tags off my clothes. Constantly fidgeting with my jewlery. Having a full blown meltdown that had to be addressed with my mother in kindergarten because the meltdown started when another kid “gently” touched my shoulder when I was hyper involved with doing something.
The list of my symptoms go on.
Most of us actual autistics are highly intelligent. Even those that require a different way to communicate because they’re non-verbal. We generally need more processing time, or have trouble changing tasks or having a schedule change. I don’t always handle last minute plans well. Travel is hard for me. I hate being on the phone and when I worked in places that required me to be on the phone I took obsessive notes while I listened. I’d often go back over my notes in order to fully process the conversation. When I don’t answer my phone now it’s usually because I know my brain couldn’t process a conversation on the phone right that moment.
But the autistic label became incredibly important to me. It’s a part of who I am in a way that explains a lot and helps me accept myself in a new light. The positive to this is that I am allowing myself to be more myself, to mask less, to feel awkward for a moment then let it go. I don’t have many friends, but I enjoy friends, so I accepted that having just one or two close friends at a time is okay. Or that having a friend that I mainly communicate with via text or chat is still a friend because getting together can feel like too much. Acceptance that I need a weighted blanket to sleep with, and it’s okay to have a stuffed animal in the mix. That walking around a store with blue light reducing glasses gets me odd looks, but it keeps the pressure behind my eyes from becoming unbearable, so I can do an hour of shopping and not feel like I need three hours to recoup. I can carry a fidget spinner or constantly spin my rings on my fingers and not feel subconscious about it. I need these things to help mitigate and process all the incoming sensory information that might otherwise overwhelm me.
There came some grief with this diagnosis for me as well. Grief of knowing that I will not be able to keep up with that mom who takes her kids to playdates several times a week without having a meltdown or a panic attack at some point in that week. Grief that I may not be accepted in some crowds, or cancel plans if the amount of people showing up feels too big for me to handle. That some of the things I’ve been working hard at all my life to try to “normalize” myself will never happen. I need my downtime, but it doesn’t look like other people’s downtime because leaving the house and being in public is part of my problem. I have a disabling anxiety disorder from all my years of masking and processing and now am needing a service dog. There is grief and sadness there, but also love and acceptance of myself.
What I need most is for the world at large to feel acceptance of myself, too. I don’t handle phone calls well. I need my fidget items and odd glasses in stores. I may detach myself in large groups because I can’t follow conversation and the sensory overload is too much.
So this year, I fully embrace Autism Acceptance Month. Not awareness, but acceptance. How can I begin to fully accept myself if the world at large feels that I need to be changed and normalize myself?
Many people use the puzzle piece as the symbol for autism. I recently learned the whole history of this, starting in 1963 when it was developed as a symbol with a puzzle piece and a crying child in the middle of it. In 1999 the Autism Society of America adopted the puzzle piece, removing the child, with rainbow colors to represent the spectrum, but added to their adoption of it that puzzle piece that early intervention would help so children could be normal while they grew up. Today, Autism Speaks has the most recognizable version of the puzzle piece, in blue. But their version includes the overarching idea that we’re a puzzle that doesn’t fit in to normal society and we require a cure.
I personally would love to reclaim the puzzle piece for actual autistics. For me, getting the diagnosis was just like solving a lifelong puzzle. The last piece that fit into a life of confusion and masking. A piece that fit in to show me a larger picture of exactly who I am. Reclaiming that puzzle piece symbol might take time, just like the LGBT community took time to reclaim the term “queer” but some still don’t like to use it because of the history and connotations that comes with it.
The infinity symbol has started to become used more often for actual autistics. Showing that the spectrum is infinite and neurodiversity is important. We reject the idea of needing a cure. Instead we need to allow support and actual autistics to live their lives without masking or being treated like we have something intrinsically wrong with us. Often the symbol is rainbow colored, to show the diversity of the spectrum. Sometimes it’s gold, since the periodic symbol for gold is Au.
So this year, on April 2, if you feel the need to celebrate an autistic individual in your life, listen to those around you who are actually autistic to see how best to support this. Some of us like the movement of Red Instead (red being the opposite from blue).
Maybe with more information and more voices speaking out from our arena we can reclaim this month as Autism Acceptance month, with no verbiage about cures and ableist ideas that we should be trying harder to be normal.