Note the content: Suicidal thoughts are discussed in this article
I do not consider myself a particularly private person by nature or care. I am an autistic who gave me, like many people in the spectrum, a set of borders that is not always in line with average neurotypical. I also grew up in a family full of people, seemingly unable to share the simplest anecdote without a detailed personal story, and I still take many of my social tips and telling stories from them.
I was similarly open-I was grazed without guilty-when I started writing first-person essays and autism operations, so I was surprised by some opinions that my work inspired. Some people say that from my work and description of my condition it was clear that I was not autistic enough to have an significant opinion on this topic. A few went even further and accused me of lying My diagnosis. Others believed that I was at the spectrum, but I was irate with the way I represented myself; They felt that I “glared” autism and looked at more stern problems that people like me and people who care about us face.
If these comments were the work of the trolls, I could finally convince myself of their release. But most of my critics were not anonymous posters; They were parents and relatives of autistic children, specialists who worked with autistic people and the self -proclaimed “warriors with autism”. Theoretically, we were all to be on the same side.
So I did what I always did when my behavior caused an unexpected reaction of neurotypes: I blamed myself, analyzed my actions and went to focus on all materials that could support me better understand the situation.
Initially, I was furious because I felt that I failed in some way. I am very stern about the tiny role I play in the minds of autism. I think that the only way to realize the spectrum is to involve the largest number of various voices in the discussion, and I wanted my one voice in this movement to be so candid and right. It encouraged me to think that I played in a tired trail of pop culture, that autism is simply bizarre and comical, or that I was accidentally nonchalant and pollyannaish about something that both for better and worse, shaped every day of my life.
But when I read my work again, I didn’t see sloppy cheerleaders or bragging. Yes, I argued that my life had value and meaning-as I really believe that all autistic life they do it-but I also mentioned many struggles, which I face as both direct and indirect result of my disability, including moments of overwhelming sensory sensitivity, depression, crash, self-care and suicidal. I did not understand how anyone could believe that I claim that autism is nippy and nothing large when I willingly revealed about myself.
Trying to understand what they wanted from me and people like me, I expanded my ordinary reading on this subject, mainly a mixture of the work of other autistic writers and texts recommended by my neurodic therapist to include media and discussions dominated by neurotypical persons with a personal or professional connection with autism. I was surprised by a lot of what I found.
Although there are a few great allies who write during the topic and listen when autistic people have something to communicate with any means, there are even more who want to control the conversation with an extremely narrowed, and maybe even exploiting narrative. There are still more melancholy, there are many sympathetic people who completely buy this narrative because they have never been exposed to other perspectives.
Parents live and filming their autistic children and are hailed as heroes. The former guardian writes about the hygiene of an autistic man with whom he worked, including graphic details about the elimination of Dingleberries from pubic hair, and is praised for the assessment of the “epidemic”. I cannot argue that these positions did not cause consciousness, but I am worried if this awareness really extends to greater support or even greater compassion for autistic people. And even if so, I wonder if it is worth the cost.
When allies buy the belief that the tragedy is the only true representation of autism and feel that they must put the most intimate details of public autistic life to tell the world what this state is, violates the privacy of people who probably did not agree to share their stories. What’s more, it makes the already sensitive population even more open to public control, attacks and abuse. When it is expected that autistic independent lawyers will participate in this conversation, it seriously exposes our health and well -being. I refuse to participate in this discourse in the interest of protecting my own autistic life.
First of all, Abject tragedy is not my truth. I regularly fight autism and let me say that I often suffer from some of its most common concomitant diseases, such as depression and anxiety. But even on my worst day it didn’t occur to me to define my life through them. Good things happen to me despite the reason for autism. Neutral things also happen and are the same part of my true history as the rest. And even if it wasn’t so, how good it would completely represent me in terms of misery, which causes me and the people I love? Everyone deserves to believe that their lives are worth life. In fact, this belief is an integral part of the survival of a person in this world. Autistic people face a sufficient number of suicide thoughts, not asking for thinking about themselves as their loved ones, and I cannot support or contribute to a conversation that increases this risk.
I also have my social and financial prosperity to be considered. If I write about my depths of my cracks, my hygiene or other intensely personal things that give some neurotypes a delicious dose of peeping along with their alleged compassion, this information is related to my name forever. This will affect how people treat me in their personal life and how future employers can see me and it probably won’t be positive. I can’t afford the risk of my ability to create and care for relationships and support myself.
I also learned that an attempt to prove neurology for the autism warrior is a lost battle. There is no point in which I have ever convinced one of my critics that I was autistic enough for their preferences. And I’m not sure if the person who must hear about my habits in the bathroom, before he is willing to afford any empathy, is someone I can really trust in my secrets, my case or life.
Every writer must weigh what they want to share their work against how they are ready to live. For me, this includes balancing work, which can support enhance real awareness with the consequences of disclosing uncomfortable or private information in a world that has not reached the level of acceptance of autism, which makes it sheltered.
The challenge is to find what works for me, both because of my (above) sharing tendencies, and the fact that, like many autistic people, most of my social conditions lead me to the trust of other people about my instincts. In the end, we do not say that neurotypical and autistic people have various social guidelines, we say that autistic people do not understand the social instructions of neurotypes and must learn to read and send them. However, I came up with one guiding principle from my previous experience: a real ally would never demand that I share more about my life; They would be more interested in working on a world in which I would feel comfortable sharing these things if and when I wanted to do it.
This post was previously published in 2016 EstablishmentRIP, so much of what Sarah wrote, still stands in 2025, we asked to publish her essay.