Karen can be found in her sporadically updated blog at joyfulautie.blogspot.com and on twitter.com/AuRtist. She loves cats, yoga, backpacking, art, and is “autistic in the typically-untypical female way”.
I was diagnosed a little over a year ago, which was a significant moment of relief and confirmation. It’s been a long journey. In the 80s there was no name for a little girl like me, and as a ‘genius’ (but not emotionally ready for the gifted program), my learning disabilities were masked. I was an intense, shy, and intelligent child who was recognized as smart and talented. I demonstrated artistic talent in kindergarten, and I read before the age of 4, and excelled in many areas. I showed perfectionism, however, frequent bouts of stomach aches, and was teased in school. I always felt different, and often felt “wrong”. Having been diagnosed with alexithymia, I see now that I really didn’t understand and couldn’t verbalize what was happening. It was like I was living behind a wall of water. I wasn’t neglected (far from it, I grew up in a privileged environment with parents who cared about me), but in a way I was, because no one could perceive my suffering. My precocious reading masked auditory processing difficulties, my hypervigilance masked my lack of understanding of social pragmatics. I was obedient, observant, and in a way, I “had no needs”. My peers drifted ahead.
In my twenties while I was in graduate school, I collapsed. I was tired. I couldn’t shore up the sand castle anymore, spending 110% of my energy to mask learning and executive functioning problems, as well as try to keep up in a world that demanded more and more of me. I went on medication, then into the hospital, and churned through a few doctors and multiple medications and diagnoses, all the while feeling like something was missing from the picture. The doctors were failing to capture something important about my experience. Anxiety and depression, which I have felt to some extent all my life, were merely symptoms, and pills did seemingly nothing to address what had me depressed and anxious in the first place — a world that felt like a powerful ocean cresting over me, and then hitting me again before I had a chance to recover from the last wave.
I have been practicing yoga for ten years, and it has helped immensely. I have learned how to better ‘ride the waves’ of emotion, and practice the yoga of acceptance and awareness without judgment. I became a yoga teacher to share the practice with others, and I hope to regularly teach autistic adults someday. Yoga helps with sensory integration, body awareness and proprioception, and emotional regulation. In my opinion, Temple Grandin is so correct that the sensory processing challenges of autism are really neglected and unrecognized as a factor in many of the outward manifestations of autism. Address these sensory needs and even the social world may open up a bit. Awareness is key.
AWN is a breakthrough organization that is bringing much needed awareness to the unmet needs of autistic women. As I discover other autistic people, I find in them a mirror for understanding myself, and we teach each other. The value of peer work can’t be understated. I am lucky to have moved to a city that has a very strong organization working with autistic adults including a lot of females. Many women don’t have this option.
Life is work-in-progress-good. I am looking into speech therapy for social pragmatic language problems, and executive functioning, and I am addressing my sensory needs. I have partner who cares deeply about me and I am building a community that sees my gifts and accepts me with my challenges. I am sometimes clueless, but I think that people can tell I have a good heart. I am full of emotion. I am full of poetry. I am an ocean.
Karen,
Thank you for sharing your story. It seems like you have taken the challenges you have faced as you were growing up and tried to find positive solutions to handle those challenges. Yoga is beneficial in so many ways, and I can easily see it as a way to help with sensory integration and emotional regulation.
Life, for all of us, is a continuing work-in-progress, where we have the opportunity to understand ourselves better as well as understand the world around us. We may not receive all the answers, but every one of us deserves a chance to figure out how we identify ourselves. I love how you identify yourself with the waves and the ocean.
Karen – I started doing yoga last year & like you, I believe it has made a world of difference for my sensory integration.
Your recollection of childhood was much like mine. (stomach aches – teased in school…arrg) It’s nice that we’ve been able to find the path toward acceptance & understanding of ourselves. Better late than never:-)))
Thank you for sharing your story!
Karen, that was lovely and indeed poetic!
I am a bit different to you and undiagnosed, but there was also, no word for a little girl like me in the 80′s.
They called me Melancholic because I cried all the time, a fairy child because I was in my own world all the time, special because I was intelligent and wise beyond my years and I was usually alone. As an adult, with a child diagnosed with Aspergers, I discovered that that is what feels most right as the answer to the ‘difference’ and the questions I always had about myself.
Karen.
You write beautifully. The way you described your childhood and what happened in your twenties sounds as though you were describing my life too!
It can be so difficult when you struggle during your youth but it isn’t recognised due to intelligence and ability to compensate. And it is most certainly exhausting.
I would be interested to know if people criticised you when you finally couldn’t keep putting in that 110% every-day and ‘collapsed’. I know some people close to me were critical and said things like I was better when I was a teenager (when I was miserable as anything, permanently exhausted, and trying to hide all my difficulties every second of every day).
I’m glad you have found something as wonderful as yoga. For me, music and pharmacology are my refuges.
Thank you for sharing.
Arlene