Category Archives: Experience

Dear Autism Parents: On Unconditional Acceptance

I just read an essay in What Every Autistic Girl Wishes Her Parents Knew and it touches home with me. In it, the author, Haley Moss, mainly describes how she feels parents need to ucnonditionally accept their autistic daughters. She particularly emphhasizes the need to support the girls’ special interests even if they’re not age-appropriate or girly. Boy, do I want to tell my parents this. It’s too late now, as I’m 32 and have half a lifetime of conditional love behind me already.

Moss herself too was encouraged to develop age- and gender-appropriate interests as a child. She recounts a fourth grade memory of being advised to trade her rare cards for Bratz dolls. I have no idea what they are, but I remember in fifth or sixth grade also being encouraged by my mother (in not so subtle ways) to trade my Barbie dolls for pop music CDs. After all, Barbie dolls may be girly but they’re not deemed appropirate for an eleven-year-old.

The negative effects of one such incident, like Moss experienced, can be undone by a greater occurrence of open acceptance of the autistic’s special interests. For example, Moss’ paretns eventually affirmed her interest in video games. In this respect, I felt generally okay about my interests in fifth and sixth grade, because, though my mother did not support my playing with Barbie dolls, my father did support my drawing maps.

As a general rule though, I have commonly felt only conditionally accepted by my parents. This is reflected in constant victim-blaming when I was bullied. They were at least somewhat consistent in that, in that at least my father spoke negatively about the intellectually disabled girl whom I bullied too. Of course, he set an example of ableism by doing this as much as my parents did by victim-blaming me.

When I went into college to major in applied psychology, I still got my parents’ reluctant approval. After all, though my major wasn’t that well-liked by them and my college wasn’t as prestigious as they had wanted for me, it still was college. Since having experienced my breakdown in 2007, it’s pretty clear my parents are not there for me anymore. That’s sad, but it’s true.

The saddest part about What Every Autistic Girl Wishes Her Parents Knew is, unfortunately, that those parents who most need to hear the messages in it, will not read it. My parents don’t even think I’m autistic despite my having been officially diagnosed half a dozen times. Other parents may’ve gotten the diagnosis but choose to join the likes of Autism Speaks and shout “You are not like my child!” at every autistic adult trying to educate them about acceptance. That’s so sad. However, if some parents are helped by this blog post or by the book in showing unconditional acceptance to their children, that’s already good.

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?

#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.