Last year while discussing my Master’s thesis (How Autistic People Experience Humanistic Therapy) a classmate asked me, “How much of autism is co-created?” What she meant was, how much of our traits are pre-wired in and how much are simply a response to a world that often doesn’t make room for us. I was surprised by her question because it is one that many people off the spectrum wouldn’t think to ask, but one which has come up a lot in my study.

One participant from my study made the following statement during an interview, “I was massively bullied in school… Being bullied, that is like being abused repeatedly. I think I definitely have Complex PTSD. I have social anxiety. There’s so much stuff, and then you get to be an adult, and, if you have a diagnosis of autism, all the quirks that are seen just gets grouped as autism.”

While bullying and abuse are obvious links to trauma and anxiety, there are more subtle but erosive effects of being repeatedly judged by people who see life through a neurotypical lens. Below I use an excerpt from my book, Disappearing Girl which looks at how I experienced my school hallways when I was younger and how my difficulties were routinely devalued by the adults (AKA the people who said what was right and wrong).

At eight a.m. the bell would ring and I would head into the crowded hallways to narrate my way to class. The world seemed so busy and chaotic for me that making simple statements such as “… and Kate finally reached her classroom” helped to keep me focused on what I was meant to be doing. Because really Kate didn’t just reach her classroom. A mosquito buzzed near the florescent lights, while older kids rough-housed at the far end of the hall, a male teacher with an auburn moustache and shiny loud cowboy boots told them they needed to get to class, and some girl with a ponytail so tight it would squeak if you touched it walked by, and a woman wearing a nauseating perfume and a big chunky necklace smiled at the man with the moustache, and Kate finally reached her classroom.

Sometimes the teachers would ask why I was late, and I gave an honest answer, that I couldn’t open my locker or that I got lost trying to find the classroom. Even months into school I would still get lost. Then the teachers would ask why all my classmates seemed to be able to make it on time, and why no one else had trouble opening their lockers, or why no one else got lost.

The few times I attempted to explain my difficulties, I was greeted with the statement, “That’s just an excuse.” This left me confused, as it was often the same people asking for an explanation who were refusing to listen. For any child, the experience of being repeatedly given tasks they can’t handle and then being chastised for not coping ingrains in the mind the message that they are not allowed to not cope.

Many autistic women I have spoken with have talked about their difficulty with being relaxed when in the company of others. I believe this comes from years of receiving the message, we are not allowed to: not cope, be different or be too sensitive. We are certainly not allowed to have needs that require others to make adjustments. We are burdensome when we dare to exist as ourselves.

Some women describe themselves as wearing a mask they no longer know how to take off when out in the world. This sort of hyper vigilance creates a significant barrier to intimacy with another person, mental exhaustion at the constant effort and emotional dysregulation. I used to describe my emotions as a jam-packed closet that needed to stay shut, for when it got open, even just a little, there was sure to be an avalanche of stuff going everywhere. These avalanches, when they happen, often cause real world problems. Besides the fact that they are distressing for the owner of all the stuff that spills out, they drive away friends and partners, and sometimes cost us the life we have worked hard to build. And afterwards, while rebuilding, I have been left feeling like I’m carrying an explosive secret, my real self, which I must keep hidden at all cost. This is exhausting!

Many people, including myself, come to a point in our lives when we decide to unpick our past and explore the question of: Can I take off the mask? Is it safe to relax in the world? I think we can. I think we need to try. My main tip for letting ourselves relax and be real in the world, is simply to try again. Be aware of the influence the past is having on you, know that much of the anxiety you feel is rooted in a time and environment when you had much less power than you do now.

Self knowledge is power. Become as self aware as you can. In my life I’ve done this through journaling, therapy or reading psychology or self-help books. Some questions to explore could be: What do I feel and need in different situations? Are there certain situations that I find especially difficult? How do I react when I’m stressed? What do I need in order to self sooth? We need to understand ourselves so that we can explain ourselves to others.

Learn how to share information about yourself (feelings, thoughts, needs, difficulties) with others. At first it takes a conscious effort to share these things. That effort will feel scary especially if you’ve had it thrown back at you in the past. Another question to explore is: What qualities do I look for in people I can trust? Learn to identify likely allies.

Finally… Practice. The more we make a conscious effort to open up the more we have the opportunity to experience others being okay with us. And sometimes we need to experience being okay even when others still don’t get it. Our value and entitlement to be treated with respect doesn’t fluctuate based on someone else’s level of understanding. Daring to relax in the world is scary, which I guess isn’t very relaxing (at first) but, when doing this as an adult with our adult strength resilience and assertiveness, it builds confidence and eventually leads to the relaxing buoyancy of knowing we are okay in the world.

- Katherine is a psychotherapist on the autistic spectrum. She lives with her family in the North East of England and has been a member of the IAS since 2016. She attends the group chats on occasion!