Hiding or Ignored?

There have been a few articles of late about the under-diagnosis of women with autism.

I’ve spent a lot of time nodding along. After-all, I’m late-diagnosed. I was raised with no acknowledgement of my sensory and processing issues. I’m one of the lost generations, lucky enough to be found.

But sometimes the rhetoric behind it all slips into a familiar pattern. I start hearing how good we all were at masking, at hiding, at passing for neurotypical. It sounds like flattery, so I nod along to that too.

Then I furrow my brow. I wasn’t always good at it. I’m still not always good at it. Those times I’ve opened up to professionals about meltdowns and shutdowns, I wasn’t masking. As a child unable to hide from the rawness of my senses, I was not masking. 

I like to think that when I put on a front, and perform the mannerisms and small-talk for my audience, that I’m getting it right. But I’m not. I’m not a born actor. My movements may be delayed or stunted. They suggest other mannerisms that I wasn’t trying to project; aloofness, arrogance, coldness. I’m misunderstood. Not always, but often enough that there’s clearly a pattern.

As a child I was not so far from the stereotypical male presentation for it not to apply. Did anyone ever suggest it? Nope. As a child I did not mask.

It’s not that I’ve not been hiding and trying to fit in, but that is not enough to justify the under-diagnosis. 

It can feel a bit like being patted on the head with a, “You were just so very good at masking, that we couldn’t possibly have spotted you. Clever, little old you!”

When actually all I want is a sorry. 

I want a, “We screwed up. We didn’t realise there were so many women out there struggling. We got it wrong. We let gender bias get in the way. We didn’t realise you might present differently. We will do better.”

But then I’m lucky, I only have to contend with the gender bias. The racial bias and under-diagnosis of anyone who doesn’t fit the white, male stereotype is not the fault of those who need the support. It needs to be actively challenged. It needs to be in the minds of every professional. It’s important.

Otherwise you’re denying people the chance to understand themselves. 

You’ll never find what you don’t look for. Years of watching my children sweep a room with one glance before declaring “Can’t find it” has taught me that.

24 thoughts on “Hiding or Ignored?

  1. Really well said! I’ve come to really feel the same way. Especially after my recent autism assessment, when one of my sisters wrote up a personal observation for me and called out my parents for treating me worse than anyone else. And here I thought I might be imagining things. But no, it wasn’t equal all across the board, and yes, I had a ton of issues. My issues were perceived as laziness, defiance, “sinfulness”, any number of other character flaws that as a female I should have been able to overcome. Seriously, I was so clearly autistic… but the ways that these issues are perceived and addressed for girls is so much different than for boys, it’s almost laughable. If it weren’t so sad and tragic and hurtful, It would be. But it’s not. Not funny. At all.

    And yes, an apology would be nice. From, like, everyone.

    Liked by 3 people

    1. Thanks 🙂 it’s so reassuring when the people in your life (with the benefit of the knowledge) are able to reaffirm what you know.

      Lazy, yup. Defiant, yup. Difficult. Prickly. And so on and on and on.

      Liked by 1 person

  2. I am waiting for a diagnosis for my teen girl and hoping it will ease a confused and painful time for her. Blogs like yours help acceptance. You and other ASD women make me hope she will one day read them and celebrate the gifts it gives her. The saddest thing I observe is that girls with ASD are the kindest, most honest, least bitchy and most accepting, yet often, in school the loneliest and most rejected.

    Liked by 2 people

    1. It’s true that we don’t do any of the game playing or two-facedness. The friends I have, who know me inside out, are the most wonderful people.

      School is not an easy place. It’s a time when people are learning and performing all the social lies that jar the most. I hope the diagnosis really helps your daughter learn who she is.

      And whenever she needs us, we will be here, to remind her that she is not a faulty person, she’s perfectly formed.

      Liked by 1 person

  3. Yes! Thank you. We weren’t looked for at all. Had someone been looking, they would’ve at least found the truth about me in college when I fell apart and was seeing mental health professionals fairly regularly for a time. Instead I was diagnosed with major depression and the possibility of borderline was tossed out a couple of times even though the motivations were all wrong. I was never actually evaluated other than answering a brief depression questionnaire.

    They weren’t looking. Not even a little bit.

    On a side note: I cannot even tell you how much reading your blog has meant to me over the last several months while I waited on my diagnosis results. Thank you, so much. There have been many autistic women’s blogs that I’ve been immersing myself in lately to get through the waiting, of course, but yours has been particularly encouraging and validating.

    Liked by 2 people

    1. Oh that is so lovely! If you accept hugs (and I’m a rare hug giver!) I’ll happily offer you one.

      No, they weren’t looking for us. They didn’t listen. Looked at the symptoms and saw them as things that stood alone. They didn’t understand us. And it’s not good enough.

      I’m (as ever) optimistic that things are improving. Girls are getting diagnoses now that they wouldn’t have even five years ago. Every battle we fight makes it easier for those coming behind us.

      Thank you for your comment.

      Liked by 1 person

  4. I remember being taken to a psychatrist in the first grade because my teacher was concerned about me. According to her all I did was sit and stare out the window all day.I didnt socialize with the other children and when asked to answer out loud I just sat there. The psychatrist response? Yous daughter makes all A’s isnt disrupitive and is either more mature than the children her age. After all he was the professional and my mom was 20 years old with two little girls a new husband and new baby. She did what was suggested;she took me to the doctor. I saves my report cards and on the back their is a section for teacher comments and basically the comments are the same each year. Comments with some concern about me being in my own little world,not paying attention,extremly tired falling asleep in class, well behaved. This was mainly in elementary school after I moved in with my grandma. I remember in 3rd grade my teacher asked if I could get to bed earlier because I could not stay awake. My grandmother’s response was :If the child went to bed any earlier the sun would still be up. And I remember 2nd grade as being very difficult. It was a new school.And I didnt transistion very well.My mom and grandma decided it was best if I just stayed with grandma because I would have to swithch schools if I moved in with my mother. I wanted to stay at grandma’s because it was quiet. I didnt mask autism back then but no one caught on to it. And as time went on I have been diagnoised as many things but never autism.That is until the age of 33 I was given a simple questionair and an hour with a psychatrist and he said to me: How did you make it through life never being diagnoised? My response? I guess all the mental illness and drug addiction got in the way.

    Liked by 2 people

    1. It seems so common that so many of us have been staring the professionals in the face, and no one has noticed. Sounds like your teachers knew it was there, but the professionals weren’t interested.

      I am so sorry that you didn’t get the support you needed from day one. It’s not right, and we were NOT hiding 💐

      Liked by 1 person

  5. Thank you for writing this. As an autistic woman who’s never been good at “masking” my autistic traits (in fact, for a long time, I wasn’t even aware of many of these traits and therefore could not have consciously tried to mask them) but who *still* didn’t get diagnosed until adulthood, I’m always really annoyed at the way the media acts like all autistic women are a) perfectly talented at looking 100% neurotypical at all times and b) that this is the only reason why they would have trouble getting diagnosed. It honestly makes me feel so erased and frustrated. So I’m glad to have read this post.

    Liked by 2 people

    1. Thanks. That’s exactly how I was feeling about it all. I’m pretty good at it when I’m really trying, but that took years to get right! And as you say, there are still things I’m working out that it wouldn’t have occurred to me to hide.

      It’s an easy cop out.

      Like

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