Autism Speaks…

Ok, so…I’ve been debating how/if/when to address this for a full year now.

After all, one of the main reason I started this blog back in April 2018 was to respond to the disheartening wave of negative posts and videos I saw all across social media that month when no one knew I was Autistic. I’ve put it off this whole time because conflict makes me ridiculously anxious. But as April approaches, I feel the need to step up and speak out. It’s time to rip off the bandaid, just like I did last April when I came out as Autistic through this blog.

Please bear with me. I know for some of you this will be a very uncomfortable read. But I urge you to please listen to Autistics!

To put it bluntly: Autism Speaks does not speak for me. I am not a puzzle piece, and I do not “light it up blue.” I do not support eugenics and I reject the notion that Autistics need to be “fixed” or “cured.” (I support assistance, accommodation, and adaptation!)

Phew, ok. I said it.

Now… to address why. (Eek!)

So many others have already spoke about this, so I will use their resources rather than try to re-explain my reasoning. I urge you to check them out with an open mind and consider donating to and supporting other, Autistic-led organizations.

This video by Amythest Schaber (Ask an Autistic on YouTube and Neurowonderful on tumblr) from 2014 is a good place to start. The video raises fantastic points and is worth a watch, though some of the data shared is outdated. (More up-to-date info below and it’s not pretty.)

Here is an image from ASAN (Autistic Self Advocacy Network), detailing how Autism Speaks uses their funds. Note that less that ONE POINT SIX PERCENT of funds is now devoted to family services…

A PDF image showing the breakdown of budget, showing Family Services funds to be less than 2%.

If you would like to hear more Autistic voices communicate their discomfort with Autism Speaks, feel free to check out this list of posts, A Roundup of Posts Against Autism Speaks.

***If you are still on the edge of whether or not to support Autism Speaks, please watch this video: I Am Autism. *** Ask yourself how Autistics feel watching this. (Hint: NOT GOOD.)

(Autistics… I recommend you do not watch it. It is horrific and it honestly makes me depressed and anxious. Please take care of yourself and stop or don’t watch.)

Funny how the only voices presented are “Autism’s” and parents. No Autistic people… hmm… it’s almost like they don’t value Autistic people’s thoughts and feelings…

Phew. Okay. I did it. In time for April 1st. Done.

If you—like me before my research into and subsequent diagnosis of ASD—currently or used to support Autism Speaks, please don’t hold onto guilt.

Instead, please consider arming yourself with facts, research Autism Speaks and alternative organizations, and pledge not to support organizations who speak about us rather than including us and amplifying our voices. (As ASAN says: “Nothing about us without us!”)

Please check out:

Autistic Women and Nonbinary Network

ASAN (Autistic Self Advocacy Network)

Instead of “Light it up blue”, check out:

-Red Instead, #RedInstead

-Go Gold for Autism, #LightItUpGold, #GoingForGold

-Tone it down taupe #ToneItDownTaupe

Consider celebrating Autism Acceptance month!:

And of course, another way to support us is by following and listening to Autistic people.

You can find us on most platforms with the #ActuallyAutistic hashtag. If you have questions for us, you can use #AskingAutistics.


[Featured image credit: Photo by Bich Tran on Pexels]

Anniversary Interview 3: My Husband

Anniversary Interviews

Welcome to the third anniversary interview where I interview loved ones about my Autism diagnosis! To read more about why I’m doing the interviews, check out the first interview (linked below).

The interviews will be with:
(links open in new tab)

1) New friends: Anniversary Interview 1: New Friends

2) A high school friend: Anniversary Interview 2: High School Friend

3) My husband

4) My parents: Anniversary Interview 4: My Parents

Then, I will share my reflections on the experience. Enjoy!

Note: These are all people who have been actively trying to learn about Autistic people and how to better interact with and support us. Please be understanding and forgiving of anything like using person-first language (“person with autism”), using functioning labels, or anything of that nature.  All of those being interviewed are being gracious enough to agree to put themselves in a vulnerable situation, and I really appreciate that. Thanks!

Interviewing My Husband

1) I told you very early on in our friendship that I was probably Autistic. What were your initial thoughts?

My husband: I hadn’t had any close friends who were autistic before, so I didn’t really have any preconceived idea about what to expect. I knew that I liked you and we were getting along well, so I was happy that you were willing to be open with me. I was glad you wanted to help me get to know and understand you better.

2) What’s it like being married to an Autistic person? What are some of the things you love about my being Autistic?

My husband: It just seems like such an integral part of who you are that I couldn’t imagine and wouldn’t want you to be any other way. I try my best to pay attention to when you might be overstimulated or near a meltdown and do what I can to help you avoid or recover from those situations. I definitely find myself noticing strong smells, sights, and sounds that may cause problems for people with sensory issues more than I used to.

I have learned so much about autism and the autistic community and I try to use that knowledge to better myself and be a better ally.  I really appreciate you teaching me about how diverse the autistic community really is in terms of race, gender, sexual orientation, interests, etc. It is vitally important for allies to listen to autistic people’s narratives and stop spreading misconceptions.

3) What kind of positive changes have you seen in me in the last year? How have I grown or changed?

My husband: You’ve been self-advocating and much more willing to stim and be yourself around others. I’m very proud of you and it’s inspirational to see you start being more authentically you.

I now realize how much you have to mask and what a drain it is on you. I can tell what a relief it has been for you to start masking less when you feel comfortable.

4) What do you think about Seeking Sara? What kinds of things are still unclear to you? What would you like me to write about in the future?

My husband: I think it’s amazing and so important for you to share your experiences. I’m so happy you’ve been able to reach and help so many people.

I really liked your podcast with Jeanette [Purkis] and your collaboration with Elyana [Prismatic] and would love to see/hear more collaborations with other bloggers and advocates out there. I’m proud of how hard you work to be an advocate, and are part of such an important movement of autistic people being heard.

A huge thank you to my lovely husband for letting me interview him. I love you!

The next interview will be with my parents!! Stay tuned for that next week.

Thanks for reading!

[image description: A picture of green leaves and a few purple flowers with a big white rectangle placed on top of it. Text on a blue box reads, “Interviewing My Husband About My Autistic Self.” The word “husband” are written in green while the rest is written in white.]

4 Things I Want People to Know About My Autistic Self

Not An Autism Mom reached out to me for a guest article on her blog where she is featuring Autistic voices. Here is “4 Things I Want People to Know About My Autistic Self”!

Click here :

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or click “view original post” below!

Not an Autism Mom

1) My sensory experience is vastly different than your own.

When I complain that the lights are too bright, noises too loud and overwhelming, tastes bitter and unpleasant, touch too ticklish—I’m not exaggerating. I experience the world in a near-constant barrage of sensations. I am very hyper-sensitive to nearly all sensory input.

I grew up with a lot of internalized embarrassment and shame surrounding my over-sensitivity. At the time I wasn’t diagnosed but I felt different and weird. I was the only kid who covered their ears and cried during fire alarms, always squinted in the sun on the playground, jumped at sudden loud noises, and absolutely refused to eat bitter or spicy foods.

I wish people had understood growing up that I’m not “weird”—just different. My sensory experience is different than yours, but that doesn’t make it wrong or even fully negative. When I am at home and can…

View original post 1,229 more words

Seeking Sara


Sara as a 10-year-old, dressed in a blue polkadot dress. Sara is looking over her shoulder at the camera, smiling very faintly.I have a secret. An unintentional one, but a secret all the same. In a sense, I live a lie every day. I wear a mask that I can’t remember putting on. When did I first don the disguise? When I was 15? 10? 5?

Perhaps in actuality there are layers upon layers of masks that I hide behind, all stacked on top of each other as I grew older. Or maybe there is a whole host of masks that I subconsciously change out as the situation calls for a role.

And yet, until recently, I had no idea I was hiding anything. Perhaps that’s what is most telling about the depth of this lie. Can something be considered a secret if it was unknown even to you?

It wasn’t until I was 24 or 25 that I really, truly let myself begin to wonder. For as long as I can remember, there has been this nudging, nagging, itching question of “Why?” echoing up from deep within me. Why is this so hard? Why can’t I do this? Why can’t I be like them? Why can’t I keep up? Why are they like that? Why am I like this? Why are they so very different than me? Why am I so different from them? But it wasn’t until I spoke to a new therapist that it all made more sense.

The answer came as a wave, breaking over me and dislodging a stopper inside of me. It was as if suddenly everything and nothing made sense—all at the same time. With this realization, I grew more in a year than I had in the previous five. So many things finally made sense. I was able to adapt, to compensate, to allow myself some credit and time to heal and do what I needed to do.

A large part of why I am writing this blog is to confront my enormous lie—the lie of me. In many ways, my journey to discovery has been a massive puzzle, like the ones in those old Highlights magazines where you have to trace the tangled knots to lead to the source.

Ultimately, I have three primary reasons for writing this:

  1. To make sense of those tangled knots, unravel them, and find my true, authentic self in a therapeutic and constructive way.
  2. To help those on the outside to understand what goes on behind a finely-crafted disguise like mine.
  3. To reach out to those like me that shelter behind a mask they may or may not remember crafting, particularly the women and gender queer or non-binary individuals like me who are so often overlooked and left behind.

In many ways, this is my coming out. Coming out to my friends, my family, myself. Now, at 27, I am proud and relieved to say:I am on the Autism Spectrum. I am Autistic. I am Sara.