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This is an article I wrote in August 2020, some 2 months after my diagnosis.

A question I hear often: “Why is there so much trauma around having been an undiagnosed autistic child and youngster?”

Let me try to explain. I have high sensitivity, my senses work without filter. This can play up badly whenever conflicts are going on, or when I’m in an emotionally intense place. Very positive things can also cause ‘sensory overload’: I can’t sleep, can’t stand sounds, no interaction, no movement… I need my soft and silent space: a little place where I can curl up, recharge my batteries and know I will not be disturbed. Where I know my needs will be respected.

As a kid I did not have that freedom. One of my obsessions was keeping my bedroom door closed. My room was central in our apartment, right opposite the living room. And I was not allowed to close my door. This was real torture. Hearing pots and pans and the washing machine and the toilet flushing, plus loud TV (often times the living room door was not allowed to be closed either!) and family members talking to each other from different rooms… All these ‘normal’ home sounds of a family living in an apartment, one would say. But to me it was mere pain, the noises banged and echoed inside my head where I could not focus on anything but on surviving these sensory agressions. It was exactly because I was so sensitive to the noise and in need of privacy that my door ‘had to stay open’, as with my other sibling this problem did not exist and their door was however the f*ck they wanted it to be. Of course all of this was detrimental to my mental health, but also to the relationships with the other people living in that apartment.

Feeling ‘edgy’ and on guard during most of my days (which is a symptom of C-PTSD), I exercised in staying awake until the night fell. Everybody would go to bed and I would finally be able to create my Bubble: I needed the relief of a safe space where I would not be interrupted, and where I could do what my soul needed. Well, not really, but I would sit down and write, enjoy the silence, think, dream, make collages. Process my day, recharge my batteries. I think that my long years of insomnia stem from this time.

Many people who are diagnosed as adults have C-PTSD (complex post traumatic stress disorder ). This has several reasons.

First, there is the fact that unrecognised autism can lead to all kinds of repetitive strains as in the example I described above: not being allowed to close my bedroom door was cause of so much stress and conflict that by itself it caused C-PTSD, as it was perceived by me as a repetitive form of abuse and it complicated my relationships, including with myself, since it hindered clear thinking and focussing on whatever I had to do, such as school work, or simply follow my thought process. I was in a constant state of sensory overload, without a safe space to recharge. My needs were not understood, and were interpreted as being the spoilt behavior of a tantrum throwing kid. (The difference between an autistic meltdown and a tantrum, you ask? Basically, an autistic meltdown is a physical reaction to sensory/emotional overload, and has no purpose other than to eventually find a form of release, while a tantrum is created because one wants to obtain something). As a result of the ‘educational open bedroom door’, whenever I was in dire need for understanding and support, on the contrary I felt misunderstood and rejected, and finally ended up seeing myself as a bad person and a failure.

As a typical second cause for C-PTSD, there is the way relationships unfold: autistic people with normal to high intelligence, especially undiagnosed girls, are always searching for ways to ‘fit in’. We try to dress, talk, behave like those who seem to master the social codes, in the hope of being accepted by a social circle. This is an open door (there’s that door again!) to abuse: as we obviously don’t master the codes of relationships, we often get approached by people who want something from us. And it’s a perfect combination, as we are eager to offer A LOT in order to be liked, let alone loved. People can come to us with all kinds of intentions, and there we are, unable to read the signs. The relationships that are born from being ‘desperate to fit in’ are barely ever positive. How could they be? They don’t last very long either, as we too evolve, and even our chameleon behavior changes, as do our interests. And sometimes, the relationships become so abusive that we have no choice but to leave. These relationships can wreak heavoc on us, and break every bit of confidence that is left. For some, a love relationship can be traumatic because it is abusive, but a long series of broken friendships can also leave us traumatized and at loss. Many autistic adults leave behind them a long history of broken connections, often without a clue why.

When I speak about traumatizing relationships, of course there is also the institutional abuse in the form of school, and later the workplace. Often a source of ‘sensory overload’ (the harsh lights, the loud talking, the movements in a space and time that we can not control…), many autistic adults have difficulty following the path of school, study, and keeping jobs. I have however experienced that often work relationships are more comfortable and satisfying, as the codes are clearer and we have a common activity. And yet, I went through years of ‘temping’: the perfect survival system, as the missions were always intense, but SHORT. Temping and other precarious jobs were typically part of my coping mechanism. I was in ‘survival mode’, and not in Life. (And you know what? Being in survival mode is another symptom of C-PTSD)

So there. Seen from the outside, it may appear that our lives are not so different from other (‘neurotypical’) people’s lives and that those ‘little things’ are not that bad. And yet, maybe you can understand now why the status of my bedroom door was vital to me. I needed the permission to create a safe space in this world. Since I was denied this right, it became an obsession: I dreamed of the treasures that would come from having my own room, my attic, or even a broom closet or an old forgotten car in a garage. And so, for many years, I had this recurring nightmare were I just wanted to close a door, and tried hard to lock it in order to stop intrusion (recurring nightmares, another symptom of C-PTSD).

As a kid, I once went for a memorable sleepover at a friend’s house. She had a huge room of her own, with a door she always closed. And a garden full of cats, and a garage. Inside it, there was a ‘Deux Chevaux’ (Citroen) car. It was red. Or turquoise. Not so sure now, it was almost 50 years ago. But it was beautiful. What we did? In the night, we took blankets, packets of crisps and lemonade and went to camp in that little car. With a tape recorder. We listened to David Bowie and ate paprika chips. And laughed and sang. And most of all: NOBODY came to stop us! I imagined I would do that every night if I’d live there. Freedom, tranquility. Adventure.

Marlene

PS: there is treatment for C-PTSD. If you think you suffer from it, do talk to your practitioner or therapist. EMDR therapy is very helpful when done with a qualified psychotherapist.