By Archer Rosenkrantz
I’ve got SPD, which means Sensory Processing Disorder. This means that I am overly sensitive to all stimuli. It also means that I have a low pain tolerance, I am uncoordinated, I bump into things, and I have a hard time telling where my limbs are in space. “Clumsy,” “overdramatic,” and “attention seeking” are the words I was often called growing up because of this. I lived in a state of constant overstimulation. The lights in classrooms hurt, the noise of my classmates who were being too loud hurt, and I was “clumsy” enough to land myself multiple TBI’s (traumatic brain injuries). This is just the beginning of the choke hold that my autism had on my life, and all the trauma that came with it. Put your seatbelts on, this blog post might be intense.
There is a common saying in the autistic community, “There is no such thing as a non-traumatised autistic person.” I don’t know if it’s true, but I think there has got to be a high likelihood that it is. A piece of this is that autism doesn’t come by itself. Autism, at least for me, is like having 32 health problems stacked on top of eachother in a trenchcoat. Sometimes it feels like I'm drowning in my health issues, but other times it feels like I’m in a boxing cage match with them. If I could list my chronic health issues in job applications to prove that I am strong and full of perseverance, I would be a shoe in for every job out there. Yet, I don’t think writing severe irritable bowel syndrome and epilepsy on my lists of strengths would be appropriate.
Fun (not so fun) facts about me: I spent a lot of my childhood in and out of hospitals and doctor’s appointments. Something I did every single day was throw up multiple times. I had a major procedure done almost every year. I experienced chronic pain from a very young age. Yikes, am I right? With my lower than average pain tolerance and my sensory sensitivities, all of this was made a lot worse for my brain to experience. By the time I was 12, I had MDD (major depressive disorder). Double yikes!
Medical environments aren’t friendly to those with sensory disorders. The lights are always painfully bright, it’s often really loud, medical gowns aren’t the most sensory friendly, lack of safe foods, etc. It’s not friendly to autism in general. I look back on my time in these environments with a lot of ideas for how they could have been made easier for me and others like me. Nurses and doctors could have given me ear plugs, sunglasses, and safe textures. They could have asked me about my special interests while treating me. They could have listened to me when I said I was in serious pain instead of writing me off as dramatic. Could have. Now I’m an adult with health issues and my heart races when I set foot into a medical environment.
I cringe whenever I hear someone saying that stress takes years off a person’s life. Probably because I know it's true. It is unfortunate, but people with autism have significantly lower life expectancies than people without autism. Suicide rates are higher, stress levels, more injuries, medical and health complexities, and lack of access to health care contribute to a lower life expectancy. While we could sit around in sorrow about how sad this is, maybe we should be thinking about how we can make things better instead. How can we help make growing up as an autistic child with health issues less traumatizing? How can medical professionals better treat those with autism in the healthcare environment? How can we make healthcare including mental health care more accessible to autistic folks? How can autistic folks heal and cope with a lifetime of chronic pain and health problems?
A lot of autism research has been conducted with strong male bias. People like me with autism haven’t been studied much. AFAB (Assigned female at birth) folks are not represented in most autism research, therefore most people who receive autism training are receiving biased and not fully encompassing information. Autism looks very different in AFAB people than AMAB, (assigned male at birth) people. Medical professionals are most often trained to look for the signs of AMAB autism, and therefore miss the opportunity to approach care more sensitively with many people. Due to the autism research gender bias, AFAB people are more often left to discover their autism at a later age, missing out on necessary care that was needed as a child. Criteria for autism diagnosis is only getting more narrowed, leaning more and more towards the AMAB symptoms for diagnosis. Race also plays a factor, as most studies on autism have been conducted with overwhelmingly white participants. In my eyes, equitable research and education is the key to bringing great autism minded training and care to the healthcare field. Sharing our stories, and uplifting one another’s voices is another powerful way to ignite positive change.
I remove my trench coat when it is appropriate (yes my health issues are clothed underneath). I share my story, my struggles, and the hurdles I overcome with others in the hope that I can aid in visibility. By writing this, I am hopefully moving in the right direction by making others feel seen and educating those who don’t experience this. Sometimes It feels like I’m walking through the mountains with half a map drawn in crayon scribbles trying to find my way to somewhere that feels like home. I’m 23, autistic, traumatized, full of health problems, and I’m just trying to make educated guesses about which of the crayon scribbles is the right path. The cool thing about the autistic community is that every now and then, I find someone else lost in the mountains with half a map. We sit down together, trade helpful information, and talk about frogs and the best rocks we’ve seen. As we continue our adventure together, stimming as we go, we find more friends, with more pieces of the map. We help and support one another, and we make the place that feels like home together. We draw it on the map together. Meeting other folks with autism makes me feel seen, loved, and understood. Building community is powerful, and it helps us heal through our shared trauma. We are a powerful, strong, and inspiring community of incredible autistic human beings.