This is Me

This is Me

This blog post has been a long time coming.

Four years in fact. I’ve pondered and drafted and even scripted it as a YouTube video, but in the end I always put it off. Now is the time.

Why?

This.

Keala’s workshop performance of “This is Me” was the spark that finally set this into motion.

So here goes…

 

 

I am a diagnosed Aspie on the autistic spectrum.

If you know much about how ASD presents in females you’re probably not surprised.

But if you’re picturing the kid from Parenthood you might be.

That’s because aspergers is different for everyone. Its not simple and it defies tidy boxes and definitions.

Which is why its called a spectrum. If you know one aspie you know one aspie. And the next you meet will likely be vastly different.

I’ve decided to share because it is a big part of what makes me… me.

And because if those of us who can mask as neurotypical continue to do so, the understanding of autism will remain narrow & stereotypical.

A couple notes about vocabulary before we continue…

I use the terms aspergers and autism here. My diagnosis is for aspergers, which can be considered as “high functioning”, on the autistic spectrum (or ASD). The US no longer holds aspergers as an official diagnosis, but other countries still do.

This means I would now be considered autistic by an American psychologist. But because aspergers was my first diagnosis it has a warm feeling for me and aspie is the term that I prefer.

 

In the spirit of sharing, here are some of my aspie traits.

Remembering that everyone on the spectrum will present differently.

 

 

1. I have sensory processing issues.

 

Showers are torture to me. I live in t-shirts because restrictive clothing drives me up the wall. And I struggle to understand conversations when music is playing.

This is because my nervous system is highly sensitive and my brain has trouble processing input. So I experience sensations more intensely than most people. Just think of the Princess & the Pea. No matter how many mattresses you stack up I will still feel the pea. The same goes for sound. Or light.

Which is why I’m forever squinting or blinking in photographs. (Yes, I did have a brief foray into t-ball, but was more interested in stomping ants than chasing balls.)

 

 

2. I am a big collector.

 

Keys. Coins. Books. Mugs. Teapots.

Growing up I collected Barbies & never took them out of their boxes. (If you’re curious they are worth less now than when we first purchased them so it wasn’t a brilliant money making strategy.)

 

 

3. You might think I’m a control freak.

During my diagnosis I realized that a lot of my flaws are actually coping mechanisms.

Because I can’t always read social situations…

Because the world can often seem too bright / too loud / too much…

Because of my social anxiety…

I constantly run a little computer program in my brain that is analyzing what is happening and determining what to do. I thought this was completely normal, but apparently it is quite unique. This can be exhausting so I really prefer to know what is happening in advance. Having structure and following a plan helps me feel safe and capable. Even the smallest changes can really be a struggle and potentially cause a complete meltdown.

So this is why I’m not good at spontaneity, why I want to know all of the details in advance, and why I probably won’t say yes to last minute plans.

 

4. I am deeply passionate about certain topics.

The official term for this autistic trait is “special interests”, but I don’t think that conveys the depth and intensity with which our interests manifest.

For example… when I become interested in a creator’s work I consume all of their content in chronological order. I have done this with Joss Whedon, the Vlogbrothers, L. M. Montgomery (2 books to go!), the Michalaks, and The Wizard of Oz (did you know there was a whole series of books?)

I’m also a huge nerd for Sarah Bernhardt, Buckminster Fuller, Doctor Who, NaNoWriMo, and Wheel of Time (among other things).

Some of my newest interests (I’m always developing more!) are around botany, gardening, and herbariums.

 

 

5. I am socially challenged.

As a teenager who still collected dolls, and was more interested in books than boys (“late bloomer” is an aspie thing too) you can see how I would struggle to make friends my own age. During those years I formed close bonds with my adult mentors and literary heroines like Emily Starr & Egwene al’Vere.

When I started college I thrived in its structure. I was connected with other people who were passionate about the arts and I could relate to my classmates as Stage Manager or Dramaturg instead of Sarah.

See below… I sat on the side making notes while everyone else was on stage. I’d finally found a way to be involved even while being apart.

 

 

Since graduating I’ve found it harder than ever to make friends, but am learning this may be a common experience for many adults in our current culture. (This is a great podcast episode about friendship & loneliness.)

So I’m quite thankful for you.

For connecting online. Where I can collect my thoughts and present them as blog post, or video, or IG post… whichever form they seem best to fit.

 

One more thing…

 

The harder stuff (meltdowns, shutdowns, negative thought spirals, and the state my teeth were in until quite recently) isn’t easy to talk about.

So please don’t come away with the idea that ASD is just being quirky and sensitive. This is just the tip of the iceberg.

Even so… weighing it all together I wouldn’t change it. Autism isn’t something to cure or prevent. Our brains just work in a different way. And while that can present challenges, it can also be a good thing. Many inventors, artists, and paradigm shifters were and are on the spectrum (even if the diagnosis didn’t exist at the time.)

Here are some great resources if you want to learn more.

 

What is the Autistic Spectrum?

 

TED Talk “How Autism Freed Me to Be Me”

 

Tania Marshall, Female Autism Specialist

 

Why you should NOT support Autism Speaks (and what to do instead.)

 

Autism Women’s Network

 

Alis Rowe, The Girl with the Curly Hair

 

This was a very vulnerable post.

I’d appreciate your support in comments here (or on Instagram).

 

If you don’t know what to say you can do what my psychologist did and simply say “Congratulations.”

 

Thanks for listening.

 

 

P.S. While I welcome honest curiosity I am not here to prove my diagnosis or debate anyone. Unkind comments will be deleted. Please treat me and all other commenters as you would sitting on my porch with a cup of tea.

P.P.S. This was also inspired by Kate Laing’s Bravery Mission (a project for anonymous stories of bravery). It’s definitely taken some lion courage to be vulnerable enough to share this here. Thanks for your support.

 

 



  • You are a beautiful brave warrior. Thank you for sharing YOU with us. Also: I’ve been to the DW Experience in Wales too! Amazing right?? Love your picture!!

    • Yes! I loved seeing all the props and costumes up close! (Not to mention touring the set! Were they doing that when you went?) And what else did you do in Wales? I also loved Caerphilly Castle and Comeston Medieval Village where they filmed a lot of Merlin episodes.

  • Jen Sain

    So happy to learn more about you! Thank you for sharing these aspects of yourself through such a beautiful piece of writing. Celebrating your truth and courage in putting out there in the world!!

    • Aw… thank you so much Jen. I’m so glad we connected through the Creative Sisterhood. <3

  • Becca Piastrelli

    This is such a brave post, thank you so so much for sharing your story and your journey as an aspie. I really appreciate the ways you know yourself and share it with the world. Also – Keala…tears for days.

    • Thank you so much Becca. And yes, tears streaming down my face when i watched that. So powerful.

  • LaRae Elizabeth Randall

    Wow, Sarah, I learned so much in this post. Thank you for so bravely sharing your story, and so much juiciness about who you are. You are always loved and held by me, sister!

    • Thanks for holding space for this story LaRae. I’m so glad to hear you were able to take something away from it.

  • Britney Johnston

    Sarah, I feel I know you so much more now! Thank you for opening up. I know it’s not easy at all to share about something so personal (I’ve got Tourette’s), however the more we share with others the more we become connected and can more easily get on with one another as a society. I think it’s important for brave stories such as this one to be told. Im looking forward to looking for these Wizard of Oz books now and I LOVED the photos. I’m so visual it’s scary! This post makes me want to click on the links throughout and see where the inspiration comes from for it. Who knows….perhaps you’ll inspire some of us to write one similar! Thank you for sharing this story and the photos! I loved reading every bit of it!

    • Thank you Britney! I wasn’t sure what photos to include, but once I thought of these I thought they were perfect. <3 Isn't it odd how we try to hide or apologize for the things that make us us when opening up is what helps us really connect? I don't know much about tourettes so I'd be very interested to hear about that experience. Thanks for your lovely comment and do enjoy exploring Oz! It's been years since I read them myself so probably time for a reread. 😀

  • Christine Haskin

    Sarah, thank you so much for so bravely and openly sharing yourself with us. It is an honor to witness you in your truth. Congratulations on discovering a part of your unique self. Loving and celebrating you, sister! ??

    • Thank you Christine! Watching you share your own story has been such an inspiration to me.

  • Jan Endresen Noblitt

    Sarah, I love your blog! Thank you, for sharing your story, with all of us! Congratulations! Sending love, hugs & many blessings to you. (( ? ))

    • Thank you Jan! I took a break from blogging for about a year, but it feels good to write again.

  • Sarah, thank you for sharing. It’s a funny thing- a “label”. I find things like a diagnosis can help us understand ourselves a bit better, but also can be challenging. I hope you feel the support of your community – we love YOU. Every part. Please continue to educate us (the links at the bottom of this post are very interested- I’ve opened them up to read later) and to let us know how to best support you.

    • Thanks Brittney! In my case I think understanding the diagnosis helped a lot. I feel I always had some kind of label and it was usually much more negative. I remember “shy” being bandied about as a big character flaw as a child. Of course so much of it depends on how the label is used and whether it is perceived as limiting or illuminating. For me it really helped me to give myself grace and realize that the things that are hard for me are really hard. (Rather than beating myself up for not being more like other people.) I have been overwhelmed by the support after this post! Thanks for reaching out. Hope we can hang out soon.

    • Just watched the TED Talk Tiffany linked above! It’s great! Adding it to my list of links: https://www.youtube.com/watch?v=jQ95xlZeHo8

  • Amanda Howell

    I’ve always been fascinated by Aspergers, and have been asked if I’m on the spectrum. There’s a lot here that rings a bell for me too… obsessively collecting things (I’ve joked that I collect collections)… awkwardness with boys… I’ve had several guys tell me that they were super in to me at some point in the past, and I had ZERO clue. Totally oblivious.

    Of course there’s more to being an Aspie than being an awkward collector, as you know, but it fascinated me nonetheless.

    Congratulations on embracing such a large part of who you are, and using it as an opportunity to understand yourself better!

    • It’s definitely possible to have some Aspie traits without the diagnosis, but also it can be hard to piece it all together because it presents so differently in different folks. My niece was diagnosed several years before me, but I couldn’t see the diagnosis in myself for a long time because it showed up so differently. I’ve also found that whether I am high or low functioning depends a lot on my surroundings and situation. I was struggling with a lot of change after graduating so I decided to see if this was a contributing factor and I’m so glad I did. The diagnosis really helped me remove the guilt from setting boundaries and sticking to them.

  • Rebecca Saxon

    So proud to be your oldest sister!

    • Love you! Thanks for being my proofreader. <3

  • Cathy Lane

    Pretty amazing you can be honest and you! Go girl

  • Such love for you and your vulnerability, my friend!

    All of the things that make you you make me happy to be your buddy and proud of all that you do. Your curiosity and sensitivity and the quiet care with which you manage your social and special interests makes you a uniquely wonderful friend and confidante – and I would never want you to change a thing about the way you friend.

    xo
    Kris

    PS – I love Egwene too! Though I’m probably more of a Nynaeve, if I’m honest with myself 😉

    • Thanks Kris. I need to put all these lovely comments in one place to read when I’m having a bad day.
      Wishing so much you lived closer! But maybe I can swing a trip to Canada soon.

      P.S. Love Nynaeve too. You’re tugging your braid right now, aren’t you? 😉

  • thank you for sharing this, Sarah! you are one of my favorites ??

  • Thank you for sharing this with us, Sarah! I’m happy to be amongst the people you wanted to know this about you.

    I can see so much of my son (and myself) in what you shared. I’m ashamed to admit that I used to get internally upset and defensive when people would outright ask me if he is autistic even though he has not been diagnosed. Not in the “not my child!” way, though. More of the “I hate labels and assumptions” way. But, really, if I get him tested and he gets a diagnosis of being on the spectrum, it will just confirm my awareness that he sees and experiences the world differently – just like I do.

    The way of seeing and experiencing things differently can, as you said, pose challenges. But there is also beauty in it. My son would still be the awesome, sweet, caring, emotionally aware, hilarious, intelligent human being he always has been. And I wouldn’t change that for anything in the world.

    On that note, I watched this TED Talk a few weeks ago and found it to be inspiring. Have you seen it? https://www.youtube.com/watch?v=jQ95xlZeHo8

    • Thanks for sharing Rosie’s TED Talk Tiffany! I’ve not seen it before, but its brilliant! I’d be happy to talk to you more about ASD and the diagnosis process if you want. I can definitely understand feeling defensive if the term has been brandished about more as a weapon and criticism, but as you (and Rosie) said it’s really just one way of being unique. Mom didn’t know about autism or aspergers growing up. She just saw what I struggled with and we worked through it together. Tania (who diagnosed me) said that the reason I am as high functioning as I am is because of how I was raised. I’m sure you’re the same with Christian (especially as you mention feeling some of this yourself). You’re such a great mum! Glad you two are coming to visit soon. 🙂

  • I’m so glad you shared with us, Sarah, and I love every part of you. 🙂

    • Thanks Georgeanne! Y’all are all making me blush. I’ve never had so many compliments gathered up in one place. <3

  • Julianne Thompson

    Thank you for being open and vulnerable, and just being you!

  • Amanda Walker MacLeod

    Celebrating you Sarah, in your courage, creativity, beauty and passion. Thank you for sharing your truth in vulnerability. You are inspiring.

    • Thanks so much for your kind words Amanda. I’ve been so blown away by the support of this post.

  • Nancy Gaines

    I always knew you were a special, not the ordinarary kind of person. You are an especially extraordinary woman and I’ve always been proud to be your friend. One of my grandsons is an Aspie too. The older he gets the more amazing i find him. And he’s the only one who gets my sarcastic sense of humor! Big love, my friend! ?

    • Thank you Nancy! I’m so glad we met through the League of Supers. Wish we lived closer so we could hang out and make stuff together. 🙂

  • ThePark Wife

    I am so proud of you for stepping out and telling your story. I celebrate everything about you!!!!

    • Thank you Stephanie! I’m so glad I hit publish. This was a big one for me, but I’ve been inundated with so much love and support. 🙂

  • Sarah, I had no idea! Thanks for sharing and clearly defining things in your post. I’ve done quite a bit of reading over Aspberger’s/autism spectrum disorder for a character in one of my books, but it’s not the same as hearing people’s personal experiences and how they manage their personal diagnosis. Thanks for being willing to be so honest and open!

    • That’s fantastic! I’d love to see more aspies in literature! Let me know if you have any questions or want to meet up to chat. 🙂

      • I’ve got another revision to make but I’ll check back in with you over questions/character! That would be great!

  • Ah Sweet Sarah, I loved hearing your story, the story of you. I’m so happy I can call such a beautiful person and spirit my friend. Big hugs ??

    • Thanks Cara! I’m trying to plan a trip to PEI this summer so I’ve been thinking of you. I’d love to chat and hear all of your Canadian tips. 🙂

  • Panamamama

    I never would have known. So brave and wonderful to tell this story. I have a son with SPD and reading this I wonder if he didn’t get it from me! We are very much alike! 🙂 You are WONDERFUL!!

    • Thank you Michelle. I hope the more we talk about this the more understanding neurotypical people can be. 🙂 Something as simple as turning off the radio or the tv can go such a long way!

      • Panamamama

        YES to turning off noise. I can’t stand the new trend in having tvs in all restaurants. We try not to eat out but when we do I try to find ones with no televisions!

        • That is so true! Why can’t people just talk to each other?

  • Oh, my goodness. SO many things I can identify with. Thank you, brave soul, for putting a voice to what so many of us couldn’t explain.

    A few years ago I watched a TED Talk by a biochemist whose daughter was diagnosed with autism, and some of the characteristics hit home. When I told my husband I thought I might be somewhere on the spectrum, he didn’t seem surprised. The Rebecca Burgess piece explains things so well, and some of the things you mentioned (being sensitive to … well, everything) is SO ME. Light, sound, touch. I can’t talk to someone in the car when the radio is playing. Stuff like that. And at work I feel like a failure, like I’m stupid sometimes because I can’t do everything as fast as I think I should (or as fast as my co-workers think I should – I’m labeled a perfectionist). I’ve said to myself a million times, “I don’t belong here” (at my job).

    I can’t wait to watch the Rosie King video.

    One final thing: I’m privileged to call you friend. 🙂

    • I’ve always thought I was just weird and sensitive so the diagnosis really helped me reframe those character traits. My niece was diagnosed several years before I was, but I didn’t think I struggled enough for a full diagnosis. It took me a while to realize how many of my little daily battles were related to aspergers.

      The reason I didn’t share this sooner was actually at the suggestion of the woman who diagnosed me. She cautioned me against sharing. Her experience was that women who masked well as neurotypical had their diagnosis challenged. But without sharing my story I never felt that I could enter the conversation around ASD and it just felt wrong. Especially when my niece’s diagnosis came up. I suspect that a blog post was the perfect way to disclose because it gave me a chance to fully explain in a format I felt most comfortable. And in the end I haven’t had a single negative or challenging comment. I feel so supported!

      I’m so glad this post resonated with you Suzy. Perfectionism is a big challenge for me as well, but something I didn’t get into with this post. Like many aspie traits it is like a double edged sword. Sometimes it can be an asset (it certainly seemed that way in college), but there is a darker side when it takes over. At least there is for me. Without the structure of university I’ve had trouble keeping that perfectionism contained and so my projects can take over completely. Finally starting to find a balance for health, family, and creativity, but I have to be mindful.

      Turns out I am blessed with many wonderful friends… I just don’t see y’all all the time. Happy to be blogging again and connect in this way. <3

  • Dawn Smith

    Thank you for sharing, Sarah!
    Fionna, my daughter, is autistic and reading this made me hopeful for her on so many levels. It can be such a hard, lonely road. I cried when I read this part: “I sat on the side making notes while everyone else was on stage. I’d finally found a way to be involved even while being apart.” Yes! That’s what we have been working together to find for her. Ways to be a part of the group/action while still being in her comfort zone.
    I appreciate you stepping past your comfort zone and sharing with us. I’m going to read this to her and look forward to delving into the links you provided!
    Hugs!
    Dawn

    • I’m so happy to hear that Dawn! Sorry for the late response. I thought I’d already replied. You’re such a great mum I’m sure you’ll help Fionna find her way to participate. When I was diagnosed my therapist said the reason I am able to function as well as I am is because of how understanding my parents were. It’s different for everyone of course, but I’m always here if you want to reach out. <3

  • Gracie Klumpp

    Sarah, I’m so glad you shared this. I know that can’t be easy, and I hope you know you have lots of love and support for being totally openly who you are–you, exactly who you are, is why we’re all here! I hope sharing brings you a sense of freedom and joy. I’m inspired by you.

    • Thank you Gracie! Sorry your comment got a bit lost in the shuffle, but it means a lot. <3