Why We Need Greater Awareness of ASD in Girls

“She’s just shy.”

“She’s a late bloomer.  She’ll grow out of it.”

“She’s oversensitive.”

In girls, mild autism can be an elusive and hidden thing; it is so easily mistaken for something else.  Lack of social skills becomes shyness.  Sensory issues become sensitivity.  Passionate, intense interests become bookishness.  We may have friends at school.  Our interests, while unusual in their intensity, tend to be common for girls-animals, art, nature.  Adolescence can be horrid at times, but many of us pull through, get good grades, and go to university or find some type of employment.  Because it is it is harder to spot, because it presents in ways that are different from boys, there is reason to believe that ASD in girls is underdiagnosed.

“Symptoms together limit and impair everyday functioning.” ~ DSM-V

The question some people may ask, then, is this:  if we can hide our symptoms well enough to go through the motions of a “normal” life on a day-to-day basis, why is a diagnosis so important?

This is why:  girls internalize their feelings and experiences, and the effects over time can be devastating.  It happens when we make a hundred little faux pas a day, when we embarrass ourselves in public, when we lose friends and don’t understand why.  It happens when we stand on the side, like an actor on opening night without a script, while everyone around us plays their part effortlessly.  It happens when we lose track of homework because of our poor executive function, when we trip over our own feet because of our motor clumsiness, when we completely lose it over the smallest things because we need to feel in control.  It happens when when we walk by and people whisper, when we dread recess, when we have to pair up with the teacher in class.  It happens when we become overwhelmed by things that don’t seem to bother anyone else-bright lights, tight clothes, loud voices.  It happens when we blame ourselves over and over again for everything that goes wrong, for being so awkward and clumsy and weird and unlikeable.

Over time, our self-esteem bottoms out.  We internalize the pain and embarrassment until morphs into social anxiety, eating disorders, and depression.   When we don’t know about autism, we often don’t get the right kind of help.  We might be medicated for depression or anxiety without ever understanding why we’re depressed and anxious.  Without that knowledge, it can be much harder to make a full recovery.

Girls and women on the spectrum often *are* limited in their day-to-day functioning, but in ways that are less obvious.  And that is why it is so critical to diagnose girls with ASD at an early age.  Let’s empower the next generation of girls with ASD with the knowledge and skills they need to feel positive about themselves and their future.

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12 Responses to Why We Need Greater Awareness of ASD in Girls

  1. autisticook says:

    Oh I really like the point you’re making! I knew about the under-diagnosis of women because they tend to be more heavily conditioned to fit in and go unnoticed. But I had never applied that knowledge to the “limitation/impairment” criterium. I’m struggling with that myself because I’m probably not “impaired” enough to get diagnosed, even though I exhibit nearly all of the symptoms. I’ve just found workarounds on my own, or am not as bothered by symptoms as I should be. The only area where my lack of social skills really comes to bite me on the bum is at work. The longest I’ve ever worked somewhere is two years.

    • Aspermama says:

      I know what you mean about not feeling impaired-as I’ve gotten older, I’ve learned a lot and found a lot of workarounds too. I tend to struggle more with internal things like social anxiety, depression, etc., but those are gradually becoming milder. Finding and keeping a good job is definitely one of the hardest things about AS. I really hope you’re able to find a workplace where your unique talents are appreciated.

      Thanks so much for dropping by and commenting!

    • ischemgeek says:

      I do think I’m impaired, simply because a lot of the stuff I choose not to do, I choose not to do as a workaround to the ways it affects me, and a lot of the workarounds I use are matters of necessity rather than convenience: I don’t do parties because they’re too overloading. I spent most of the time at my sister’s wedding helping out with odd jobs. She thought I was being helpful. Partly true – but I was also seizing excuses to get away from the noise and the people and the conversations. People were all, “You’re such a nice sister to do those things for her,” but they didn’t realize that while I was away helping with stuff was the only times I actually enjoyed myself.

      Likewise, while I can have friends, I can only socialize in small numbers. For this reason, I have never had more than 4 friends at any point in my life, and usually I’ve had half that or less. Because I get overwhelmed and shut down in groups of more than 4 or 5.

      And so on.

      The sole reason I don’t have work problems is because most of the people I work with happen to have autistic relatives and so they recognized me as autistic before I even knew I was and they’ve proactively accommodated me without even being asked. I’m certain that without their help, I wouldn’t be able to hold down my job.

      I think that as much as we’re conditioned to “fit in,” we’re also conditioned to view workarounds for our impairments as the same thing as not being impaired. Which isn’t true – accommodations are necessary only because we can’t do what allistic people can. When I type something for my coworker with dyslexia, I’m accommodating her disability. That we’ve found this workaround for her disability doesn’t mean her disability doesn’t exist. Likewise, when I avoid parties because I have a hard time with them, that doesn’t mean that my difficulty with parties doesn’t exist. That we’re self-accommodating doesn’t make our impairments go away – if anything, it proves their existence.

      This goes hand-in-hand with the ableist societal view that accommodations for disability are the sole responsibility of the disabled. So we’re taught no, we won’t help you with that, it’s your job to figure out how to deal with it because otherwise you’ve got learned helplessness and are an attitude problem, and oh by the way, if you figure out how to deal with it well enough that we don’t have to be bothered, then we’ll consider you Not Really Disabled.

      Sorry for the rant, but I see this a lot with people I know who have disabilities, and even in myself. We’re taught to deny and minimize and find our own workarounds, rather than accepting our degree of impairment and seeking help from others for workarounds that work for us. This makes it hard to get diagnosis, because we’re taught to minimize and cover it up even to professionals. But that doesn’t mean, I don’t think, that we’re not actually impaired enough for diagnosis. It just means that society has successfully conditioned us to hide our impairments enough that someone outside of us can’t see them as well as we can.

      Again, sorry for the rant.

      • Aspermama says:

        You make some excellent points here. I never thought of my own workarounds (keeping my friendships light and casual, avoiding jobs that require frequent interaction with people, avoiding situations involving small talk) as being impairments, but now that I think about it they are. Too many people with autism and other disabilities are not getting a chance to realize their full potential. Surviving isn’t thriving.

  2. lostinthelabyrinthh says:

    Hey Aspermama,

    Thanks so much for following me! I am also following you too. I loved reading this post.
    I have struggled with growing up but I was never bullied etc. Only my closest friend noticed my ‘anti-social’ ways but I tried to fit in. I always felt weird etc and couldn’t really cope behind closed doors. I only got diagnosed last year at the age of 22 and am only just learning why I do or act the way I do sometimes. I didn’t get much help from my GP and me therapist was useless. The main help I’ve gained is from guys on WordPress with Aspergers. It’s really misunderstood 😦

    Stay in touch!
    Maria.

    • Aspermama says:

      Hi Maria,

      So glad you loved reading the post. It’s definitely misunderstood and often not taken as seriously as it should be and that has kept a lot of people from getting help (my husband once saw a psychologist who told him he couldn’t possibly be autistic because he didn’t act like Rainman).

      Thanks so much for your post on depression. I’ve struggled with it off and on for a long time and it’s something I’ve never been at all open about, so when other people write about it and talk about it’s really encouraging to me. I love your writing 🙂

      • lostinthelabyrinthh says:

        Hey 🙂

        Yes I don’t really believe the ‘experts’ even have a clue about it to be honest! I can imagine that! My GP at first asked me if I sat my GCSE’s..I said yes? She said well you can’t have Aspergers then. I told her she knows sweet eff all and she referred me to someone who assessed me and said I am a clear cut case. They have got it so wrong!

        I know that women with Aspergers tend to ‘cover’/mask it better than guys but I even know of males with Aspergers that people consider ‘normal’. I think it all stems down to how we are brought up, our friend circles etc and society itself. Did your husband get diagnosed in the end?

        Ahh I was so close to deleting it! I felt that was too much and people may think I was seeking attention with it all but I am glad you liked it 🙂 I am really pleased to hear that! 😀 Do you use Facebook at all?

        Is there a way you like to express yourself? Like writing drawing or anything else?

        Thanks for replying 🙂

      • Aspermama says:

        The idea that if you finish school or get a job or have any kind of success you don’t have AS bugs me to no end! It’s definitely possible, especially if, as you said, you have supportive family and friends. My husband was finally diagnosed a few years ago.

        I’ve been drawing and writing for as long as I can remember. I don’t have much time for those things now but this blog has been fun so far 🙂 I’m on Facebook-liked your page 🙂

  3. Alana says:

    Hi, this is awesome. Just wanted to let you know.

  4. bjforshaw says:

    My own experience makes me wonder whether it might also be under-diagnosed in males with atypical gender (in terms of gender roles I present as male but act & think in ways that are predominantly female). What made me think this was that almost all of this post feels relevant to me: shy, bookish, internalized feelings, low self-esteem, anxiety,… the list goes on.

    Finding out about Aspergers and then having it confirmed was a great relief, and that journey began mostly because of resources like your blog. Thank you.

    • Aspermama says:

      Thanks for dropping by!

      You make a really good point about under-diagnosis in men and boys who present differently. We really need to be more aware of all the unique ways that AS presents itself. The diagnosis (whether official or unofficial) really is a relief and does make a big difference.

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