Dropping the Mask: Does It Take a Diagnosis? #TakeTheMaskOff

Today, the theme for #TakeTheMaskOff is diagnosis or self-discovery and its effects on masking. This is applied mostly to the experience of being autistic, but I can relate to it from a trauma survivor perspective too.

I haven’t yet read any of the other contributions for this week, but I assume the idea behind this challenge is that discovering you’re autistic, either through professional diagnosis or not, can help you drop a facade.

This is definitely true for me. When I was first diagnosed with autism in 2007, my staff claimed that I was using it as an excuse, because I reacted more to for example loud noises than I’d done before diagnosis. Similarly, my parents claimed that I was over-protected by the staff who felt I’m autistic and this led to my psychiatric hospitalization in November of that year.

To be honest, yes, I may’ve started to use autism more as an explanation for my behavior once I was diagnosed than I did pre-diagnosis. Note that I say “explanation”, not “excuse”. I don’t feel I need an excuse to act like myself, unless acting like myself were harming other people. Saying that we use autism as an excuse for our behavior is really saying that we should conform to non-autistic standards of behavior at any cost. Autism is an explanation for why I can’t conform to these standards, but even if I could, that doesn’t mean I should.

Then again, once my autism diagnosis was taken away in 2016, I did feel like I needed an excuse. And so did many other people. I was kicked out of autism communities that I’d been a valued part of for years. Suddenly, I’d been faking and manipulating and “acting autistic-like” all those years rather than just having been my autistic self. One Dutch autistic women’s forum’s members and admins were notorious for spinning all kinds of theories on why I’d been pretending to be autistic all those years and had finally been unmasked.

<PAnd at long last, I started to believe these people. I started to believe that self-diagnosis may be valid for other people, but it isn't for me. I started to wonder whether my parents were right after all that I'd been fooling every psychologist and psychiatrist before this one into believing I'm autistic.

This process of self-doubt and shame led to my first real episoede of depression. After all, if I’m not autistic, why did I burn out and land in a mental hospital? I’d been diagnosed with dependent personality disorder by the psychologist who removed my autism diagnosis, so were my parents right after all? I suddenly felt like I needed an excuse to act autistic-like, as if being autistic is indeed less than, not just different from being neurotypical.

I sought an independent second opinion and was rediagnosed with autism in May of 2017. I still am not cured of the idea that it takes a professional diagnosis to “excuse” a person from acting non-autistic. I don’t apply this to other people, but I do still apply it to myself and that’s hard.

I use this blog to counteract this self-stigmatizing attitude. This, after all, also applies to my status as a trauma survivor. I got my autism diagnosis back, but I never got and most likely never will get my trauma-related diagnoses back. I still mask, hiding my trauma-related symptoms when I can. And that’s not usually hepful in the long run.

My Big Burn-Out #TakeTheMaskOff

Trigger warning: suicide.

I so badly wanted to finish the #TakeTheMaskOff series on my other blog, but each time a topic comes up, I feel like I already covered that there. I probably did, but then again, I do want to share. After AutisticZebra posted the story of her big burn-out, I’m going to do the same. For those who know me in real life or through my other blog, this is probably old news, but well.

The year 2007 was an extremely eventful year. Three days in and I was given an ultimatum at the independence training home for the disabled I lived at at the time: another major meltdown and I’d be kicked out. The staff had already referred me to the local mental health agency for what they thought was autism, but they just wanted confirmation that they were doing the right thing. They had no intention of actually changing their support style, because they were allegedly already supporting me based on the assumption that I’m autistic.

On February 10, I had said major meltdown. I had had a fight with my parents over them participating in my autism diagnosis the night before and had been incredibly irritable all day. My least favoirte support worker was on shift, a pretty uncaring woman who kept dismissing my panicky response. So I had a meltdown. And several days later, after the staff had conferred, got told that I would be kicked out. The date for my eviction was set for June 1, which was fair enough given that they usually need to give two months’ notice.

Several weeks later, I was finally, at the age of 20, diagnosed with autism. I was relieved. I could start counseling with a very supportive community psychiatric nurse, who managed to convince the staff at the training home to give me more time to find new housing.

By July 3, I was given the keys to my new apartment in Nijmegen, the city where I’d start college. I moved out of the independence training home on August 1.

The three months that followed are a blur to me. I had almost daily meltdowns, in which I ran off or injured myself. The police were called repeatedly, but I “wasn’t crazy enough” to be admitted to a psychiatric hospital.

That is, until one day I was. On Friday, November 2, I had been wandering all day through my parents’ city, where the independence training home was located as well. In the late morning, I had been kicked off the train station for melting down there on my way to the train back to Nijmegen. I couldn’t count on my parents to support me, so desperately, I went to the training home. I wasn’t supported there by the staff either, so wandered through the city for the entirety of the afternoon and part of the evening. A training home former fellow client then offered me to sleep at her apartment for the night, so that we could find a solution in the morning. That wasn’t acceptable to the tstaff, so I was required to leave. I left the training home, took the first bus to the train station and phoned my support worker in Nijmegen to let her know I was going to commit suicide by jumping in front of a train. I probably half realized that this was going to be picked up, but still tried to convince the fellow passengers on the bus not to clal the police. I remember a woman sitting next to me trying to comfort me, saying that help was on its way. At the station, I was picked up by the police, who took me to the police station and rang the crisis service in that city. This was when I finally got admitted to a mental hospital.

Looking back, this is a clear example of autistic burn-out. I was reminded of this once again by the Center for Consultation and Expertise consultant who came to visit me this morning. I was also told by that same consultant that my former psychologist’s twisting the truth to find a reason to kick me out of the hospital – by among other things taking away my autism diagnosis -, wasn’t about me. It was more likely about the budget cuts to inpatient mental health treatment.

#TakeTheMaskOff: My Experience of Masking

Two weeks ago, the #TakeTheMaskOff campaign for autism accetpance started. I posted an article for it on my main blog, but already then I was thinking of relaunching this blog, for which the original purpose was to be able to be completely honest about my experience. That is, after all, what taking the mask off means. As such, I thought that I’d share this article here too. Like I said, the campaign is aimed at acceptance for the autistic community, but it is also relevant to the trauma survivor community. After all, many people, including myslef, mask the reality of their survivorship. So let me share.

Today, rather late, I found out about the #TakeTheMaskOff campaign designed to promote autism acceptance and awareness of the effects of masking. I really want to participate, so even though it’s incredibly hot here, I’m writing a post.

The campaign consists of six consecutive weekly themes about which participants blog, vlog or post on other social media. The first weekly theme is “What is masking?”

Masking, put simply, is pretending to be something you’re not. This can be done either consciously or uncnsciously. Many autistic adults have learned to mask so well it’s almost second nature. We’re also encouraged to mask on a daily basis when people judge us about being autistic. Then when we mask successfully, we’re told we don’t look autistic.

For example, I’m often told that I don’t appear autistic. After all, when I hold a conversation, I appear pretty “normal”. I am told I can hold down a reciprocal conversation that doesn’t sound stereotyped or like I’m scripting. I ask people about their interests, for example. Now that it’s been extremely hot here for a few weeks already, I have even mastered some smalltalk about the weather.

This obviously (to me) does not mean I’m not autistic. Autism, despite what many people think, is not about social niceties. Autism is not the same as a lack of interest in others. Besides, I have 32 years of experience being told how selfish I am for not appearing to show an interest in others. So instead of showing a genuine interest in the people and topics I’m genuinely interested in, I learned to appear to be interested in whatever and whoever I am supposed to be interested in. In other words, I learned to mask my autistic curiosity.

For example, I was eleven when my mother told me I might be institutionalized if I didn’t become more age-appropriate. My having too many toys and dolls, according to her, contributed to my challenging behavior and I was to get rid of them. Instead, I was supposed to develop an interest in music. I wasn’t all that sophisticated at the time, so rather then developing a genuine-appearing interest in music, I hung Backstreet Boys posters on my wall.

Similarly, I was encouraged to wear jeans rather than sweatpants even though jeans were a sensory nightmare to me. It was assumed that I wore sweatpants because I didn’t care about my appearance – which is partly true – or because I, being blind, didn’t know that my peers were wearing jeans.

Masking can become so internalized, apparently natural, that you no longer notice you’re doing it. For instance, I wear jeans without a problem now.

It is easy to assume that, because the autistic person no longer notices that they’re masking, it must not be affecting them. This often leads to the assumption that, if someone doesn’t appear autistic and isn’t acting out, they must not be autistic after all. Then people go on to assume that, if said neurotypical-appearing person does act out, it must be “manipulativeness”.

I am, however, definitely masking when I wear jeans, or listen to my husband’s favorite radio station in the car, or engage in smalltalk about the weather or someone’s upcoming vacation. It isn’t always a negative thing, but it is still masking.