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.

Mental Illness Labels

Yesterday, Sue over at My Loud Bipolar Whispers wrote a very interesting post on mental illness labels. It is definitely very inspiring to read how Sue overcomes the stigma and self-stigma of mental illness labels. I must admit I’m still caught up in mental illness labels at times. I started this blog in part to help myself overcome this limiting mindset where a diagnosis defines me. As such, I thought I’d do a similar post to Sue’s.

Over the past nearly twelve years that I’ve been in the mental health system, I have accumulated a bunch of mental illness labels. I am too lazy o list them all, but they included adjustment disorder, impulse control disorder NOS, dissociative identity disorder, PTSD, borderine and dependent personality disorder and depression. These labels define me in a sense, but in a sense, they do not. After all, some of these diagnoses were not just given to me but taken away again later. As such, I’m not supposed to dissociate anymore, as DID is no longer among my mental illness labels. Well, here we are, all 25 or so of us. I hear my former psychologist saying that I make up the DID because of having read up on it too much. Ironically, she was the one most eager to give me new and exciting mental health diagnoses.

Mental illness labels have a function in getting insurance to pay for treatment. In addition, they may guide what treatment and support you can access. Self-labeling (self-diagnosis) may have the added benefit that you can access support without the approval of a mental health professional. That’s how I access support geared towards people with DID.

However, mental illness labels should not be limiting my experience of who I am. I am more than my mental illnesses. Here is a list of labels I’d like to be known for.


  • Wife

  • Daughter

  • Sister

  • Friend

  • Writer

  • Blogger

  • Creative

  • Introvert

  • Compassionate

  • Intelligent

  • Honest

  • Former psychology major

  • Disability rights activist

  • Mental health advocate

  • Survivor

What labels do you define yourself by?

Movement Therapy Yesterday

Trigger warning: strong language.

So yesterday we had movement therapy. We feel it’s really helping but we also switch a lot during this type of therapy. We’re not formally diagnosed with a dissociative disorder. Were formally diagnosed DID but that got changed to BPD five years ago. Our current mental health team’s opinion is that the “pieces” are allowed to be there but there’s no need for a dissociative disorder diagnosis or any form of specialized treatment. We do DBT individually with our nurse practitioner (not in a group because we’re autistic and would be overwhelmed by a group) and the movement therapist tries to incorporate some DBT too. We really try to fit our “pieces” into the DBT model of emotional/rationa/wise mind (we purposefully avoid the word “alters” as to not suggest we self-diagnose, as our former psychologist believed we made up the DID).

The thing is, Astrid is rarely out. That is, always when we think we’ve found the core or “real” Astrid, we realize it’s yet another alter. We don’t mind as most adults can present as Astrid and act pretty much normally. However, yesterday in movement therapy Katinka was out from the start (she’s one of the main fronters). Then for some reason Suzanne popped out and the therapist called for Astrid to come back. Katinka came back with some difficulty and explained that she’s fine being called Astrid but she isn’t Astrid. The therapist insisted that she may be Katinka now but Astrid was out at the beginning. It was quickly time to end the session and we were still pretty spacey but didn’t say so. To be honest we didn’t feel fully safe to go home yet (one of us was having destructive urges), but we didn’t say anything and managed to go home anyway.

Now some of us are thinking of quitting movement therapy or the whole mental health treatment altogether. We’ve run into just a little too many disagreements with our treatment team. I mean, they’re overall good people, not like our former psychologist who just was one giant bitch. We don’t need a fucking DID diagnosis (we’re not fully DID actually). We’re fine calling ourselves pieces or whatever, but we’re not going away. Now we’re pretty sure we’re going to be taken out of movement therapy for it destabilizing us. Well, whatever. If the goal is to keep us acting apparently normally all the time, then we don’t need nor want no fucking mental health treatment for that.