Diagnosis Barriers for Autistic Women and Girls

I’m very excited to announce that I’ve been invited to contribute monthly articles to the Autism Women’s Network. My first piece,ย Hiding in Plain Sight: Diagnosis Barriers for Autistic Women and Girls, was posted today.

Thank you to everyone who shared their stories last month. It turned out that your answers to my questions were more than I could possibly use in one article. I learned so much from reading your stories. Even though I wasn’t able to quote everyone who participated, what you shared helped me to understand the issues better and I’m grateful for your insight. It’s also nice to be writing about someone other than myself for a change!

I’m in the process of developing two more articles based on the survey questions/responses so there’s a good chance that I’ll eventually include quotes from everyone who shared their thoughts.

I guess that’s it for today. Shortest post ever . . .

31 thoughts on “Diagnosis Barriers for Autistic Women and Girls”

    1. Thanks! And thank you for the input. I pulled out the section with your long quote to use in the next article because this one got too long and I realized I was actually writing about two separate things. In case you were wondering where it went . . .

  1. Congratulations! It is a REALLY good article. And it couldn’t have come at a better time! I got my diagnosis this morning and shared the information on Facebook, and I did actually have a couple of people questioning some of my “non Aspie” behaviour, to which I replied that it presents differently in women. And then your article got posted immediately after! So I shared it right away. Thanks for writing it!

  2. Congratulations! I love all the points you bring up. Cost is a huge issue for me at the moment, so I probably won’t be diagnosed until I can actually afford a diagnosis. If at all. But I definitely see the importance in getting a diagnosis, especially in getting accommodations.

    1. Thank you! Cost is a huge problem. I was shocked when I first started looking into whether insurance would cover an assessment. I just assumed it would, because adult ADHD evaluations are generally covered. Maybe some day insurance companies will see the value in covering autism assessments as well.

  3. Congratulations on your achievement.
    [a note on Autism Womenโ€™s Network]
    I do appreciate how kind you are towards me in the comments. Still, all too often I tend to feel like I’m intruding into a girl’s club here.
    Though both of my parents draw their heritage from Europe, my father’s family came from Italy and my mother’s came from the UK and France with surnames like Bogart, Rutledge and Ewing. I’ve never understood the need to segregate ourselves into tiny cliques based on unchangeable things heritage/skin color, where raised, schools attended, or gender. I don’t see how it helps the bottom line unless it truly is a subject that only applies to a particular segment of the population. I’ve heard that in the early years of ASD study, much was focused on boys… but that was then, this is now. [gotta love the S.E. Hinton reference] ๐Ÿ™‚

    1. It’s still mostly focused on boys, to the point where I’ve had acquaintances and friends tell me that I can’t be autistic because I’m a woman. Ideally, we shouldn’t have to form any splinter communities, but it’s valuable to share experiences with other people who have similar experiences based on whatever differentiating characteristic you can think of. That doesn’t need to be gender, it can be heritage or education or a love of Dr. Who.

      1. Autistic Cook, I see that, good points. I just am not as keen on it when it isn’t a voluntary thing (like Doctor Who โ€”something I too enjoy ๐Ÿ™‚ ) or a sports team, a religious affiliation or a political party. Those are personal choices, not things outside of our control like gender. Imagine if there was a Caucasian Autism Network. I’m seeing noting but lead balloons with that one… I wouldn’t want anything to do with it if it existed.

    2. I’m a girl, so I guess it follows that my experience as such influences my writing. While I try to be inclusive as much as possible, I also write about what interests me and the role of gender in my experience of being autistic is up there on the list.

      To address “that was then, this is now”, I’d love if that were true, but literally the day after my article came out, there was a news article about Australian fertility clinics recommending selective implantation of female embryos (over male embryos) in families who already have autistic children because girls are five times less likely to have autism than boys. So while we’ve made some progress, we still have a long way to go.

      1. Just in the short time since I’ve read this, I’ve learned a lot more about the (help me out with the wording here) the “lack of respect” that is given to girls/women on the topic of autism. I’ve never done much research on the topic (autism in general) and I’m thinking that since a lot of my exposure, on the topic, is from your/this blog, that I’m actually somewhat biased in reverse.
        (if that made any sense)

        1. I really appreciate your openness and your willingness to consider the other side of a discussion. I can see how you’d be biased in the reverse by reading about autism primarily from a woman’s POV (and a comparatively privileged woman at that).

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