Category: Stereotypes

13: The Autistics Left Behind

Autistics are left behind when stereotypical Autistic behaviors or traits are used as the sole criteria when evaluating and diagnosing Autistics. While this can be damaging and impactful to boys and men as well, women and non-binary folks have been left behind, misdiagnosed, and written off at an especially alarming rate. This leads to so many issues, many of which I know firsthand as a non-binary Autistic who was only just diagnosed a few years ago at age 27.

It was once thought (and still thought by many) that the number of Autistic boys far outnumber the number of Autistic girls. But with more and more Autistics like myself speaking out as advocates, people are starting to realize just how untrue and damaging this misinformation truly is. While trying to re-educate neurotypicals, some advocates focus on the differences in how girls present versus how boys present. Others look at “internalized” characteristics versus “externalized” characteristics and the differences in how traits manifest which can sometimes vary between genders. I’m not sure what the answer is myself; I only know my own experience.

These are a few of the things I myself have experienced as an AFAB (assigned female at birth) non-binary Autistic diagnosed in my late 20s:

  1. I learned early on to “mask” my Autistic traits, even though I didn’t realize they were generally not viewed as neurotypical things.  I was bullied relentlessly in primary school, sometimes even by teachers. I didn’t know why I was a target, but I knew I was and that trauma forced me to sit back and watch. I latched onto peers and mimicked, painfully masking my instincts and following their examples in an effort to conform and fly under the bullying radar. Even as I begin my 30s, taking off that mask has been an alarmingly difficult process. I still can really only let my mask completely down around my wife, when I am free to verbally stim or rock or flap my hands in joy, use echolalia, let out verbal and physical tics, etc. I can’t describe how freeing that is.
  2. Because of my “skill” at masking, I was more able to “pass” as neurotypical. The stress of doing this long-term leads to extreme stress, trauma, anxiety, and other mental health concerns. I myself have severe C-PTSD, social anxiety, a history of disordered eating, etc. I also live with fibromyaglia and chronic fatigue, and these become more severe when I have to mask for long periods of time. When you can’t understand why you are different and spend so much energy squashing yourself into a box, it takes a devastating mental and physical toll.
  3. Some special interests (which folks sadly tend to pathologize rather than celebrate) may be less obviously “unique” and may therefore go unnoticed. For example, knowing every fact possible about One Direction vs. knowing every fact possible about trains. My own intense interests include Japan, Japanese language, singing, writing, art, and fantasy/sci-fi books. These hobbies have lead me to my college majors and careers; I am fluent in Japanese and spent several years living in Japan. I now write and create art as a form of self-expression and advocacy.

There is so much more to this topic. One main goal of my blog is to hopefully reach people who are like me. Folks who have always been different, but haven’t known why. I want parents to understand more about their kids. I want professionals to challenge the stereotypes they hold and listen to Autistics.

My own diagnosis has been so beneficial, transformative, and life-changing for me. For me, the Ah HAH! moment was when I stumbled across Rudy Simone’s book Aspergirls: Empowering Females with Asperger Syndrome.

Below are the charts from Simone’s book that changed my life and started me on my search:

Aspergirls for blog.png

Used Simone Women and girls.png

Simone says of her charts:

“These lists are based on my research. While others may be coming to their own similar conclusions, I based these observations of Female AS on interviews with dozens of diagnosed women of all ages and educational backgrounds, from all over the world. These traits were threads that ran throughout their information and stories, tying us all together. As usual, I do not mean to say that all women with AS will possess all of these traits and I do not like putting us in boxes, but there was a need for an easy-to-read reference.”

While I identify as non-binary, anytime I would wonder if I could possibly be Autistic, I would pull up lists of traits and immediately shake my head, seeing the stereotypical and often male-oriented traits listed. It delayed my diagnosis by literal decades.

This chart was the first step toward self-discovery for me. From there, I found Amythest Schaber‘s Youtube channel, started jotting down realizations in a notebook…then one day, started a blog.

More and more, girls, women, non-binary people are coming forward on Youtube, in blogs and articles, and in person to talk about their experiences as Autistic individuals.

It’s about time the world listened.

Additional Info

On my blog, I recommend:

4 Things I Want People to Know About My Autistic Self

Autistic Collaboration Video!

15: Diagnosis & Coming Out

21: Coming Out (Again): Part 2, The Sequel

29: When You Don’t Believe I’m Autistic

30: Seeking Sara, Finding Alex

Other Resources

If you want to hear firsthand from other Autistics, check out the podcast Autism Stories, hosted by my friend Doug at Autism Personal Coach. Here are two episodes I appeared in, but there are so many more:

On late diagnosis (Under Seeking Sara, before Autistically Alex launched):

On gender identity as an Autistic:

Please check out the Autistic Self Advocacy Network (ASAN): https://autisticadvocacy.org/

Also be sure to check out: Autistic Women & Non-binary Network (AWN): https://awnnetwork.org/autistic-women-non-binary-network-

Twitter is a great place to find Autistics:

Mikhaela Ackerman, Edge of Playground: @EdgeOfPlayground

Autistic Science Person: @AspieHuman

Amythest (Myth) Schaber, Ask an Autistic @neurowonderful 

There are literally 1000s of us on Twitter!

Hashtags to search on Twitter: #ActuallyAutistic #AskingAutistics #AskingAllAutistics #RedInstead

Resources About Autistic Women and Girls:

Purple Ella’s Youtube video “Differences: Autistic Boys and Girls.”

  • This is a really cool video where she sits down with her Autistic daughter and son, discusses some of the ways that girls and boys Autistic traits tend to vary, and asks them about their experiences.

Purple Ella’s video “Autism: Here Come the Girls”

  • Ella and Ros talk about lots of topics related to Autistic women and girls.

Purple Ella’s video “Autism in Company: Diagnosing Women and Girls”

  • Ella sits down with her friend Ros to discuss how girls, women, (and others!) present differently.

Amythest Schaber’s “Ask an Autistic” Youtube series and tumblr.

  • Amythest is an incredible self-advocate whom I admire a lot. They are educated, sincere, and overall just a wonderful person. Their videos were some of the first things I saw about Autism.

Hannah Riedel’s Youtube channel.

Seventh Voice’s blog post entitled “The Gaslighting of Women & Girls on the Autism Spectrum”

  • An eerie, but accurate depiction of what many girls and woman face.

A great article by Fabienne Cazalis and Adeline Lacroix entitled “The Women Who Don’t Know They’re Autistic”

Excellent article about masking by Francine Russo entitled “The Costs of Camouflaging Autism”

An article by Scientific America entitled “Autism–It’s Different in Girls”

Aspergirls: Empowering Females with Asperger Syndrome  by Rudy Simone

29: When You Don’t Believe I’m Autistic

Welp, it finally happened. [Beware (or enjoy?): snarky post ahead!]

Over the last few years, I’ve been coming out to family, friends, coworkers, etc. in an effort to be more authentically me, mask less, feel comfortable in my skin, and help others better understand my boundaries and needs.

I have been very, very ridiculously lucky to have mostly positive reactions when I tell people I’m Autistic. At the very least, reactions have been surprised, but affirming. But I brace for the reaction of each new person I tell because I know that people routinely react ignorantly to Autistics coming out.

And it finally happened. I told someone (whom I no longer work with) that I wasn’t able to take on more of a workload because I’m Autistic and am feeling very overwhelmed. And her response?

Well—laughably—she first completely and utterly ignored me and continued on with the monologue she was currently wholeheartedly invested in. Then about 30 full seconds later she paused and said:

“Wait. You’re on THE SPECTRUM?!? Yeah, okay… we’ll go with that.”

She may as well have rolled her eyes given the tone she used.

She then plowed ahead with her monologue before pausing again and saying:

“Really? You’re on the spectrum? Weird, I can always tell when people are. I work with kids who… never mind.”

So, maybe not the most ideal reaction. (Yes, this is sarcasm. I can do sarcasm.)

Honestly, what I hated most about the situation was my reaction and the feeling of helplessness. I wish I had been able to directly call her out on it, but that’s something that takes time to learn to navigate in real time. I’m the type of person who needs time to really process a situation and react later. The type of person that takes a few weeks of simmering and thinking about a situation and then write a snark-filled post after fully processing.

And that’s okay.

What’s not okay is how this person reacted to me.

So let’s unpack her reaction together, shall we? Class is in session! (Still feeling snarky…)

A photo of a black woman with glasses in professional attire, paper in hand, teaching while writing with a marker.
Learning time! Photo by rawpixel.com on Pexels.com

1) “I can always tell when people are Autistic.”

Yeah… No, you can’t. I mean, sure, you probably can some of the time. But I’m sitting here right in front of you. I’m Autistic. And you didn’t know. Ergo… no. You cannot always tell. Autistics are all around you; you just don’t realize. So yeah. There’s my “highly logical brain” for you. Sending you common sense. For free. You’re welcome.

Okay, on to the next one!

2) “I work with kids on the spectrum./My brother’s best friend’s cousin’s niece has autism.”

Ok. Well, first of all… I feel bad for those kids. (Is that mean? That sounds mean.) Honestly, anyone that ignorant needs to be further educated before working with Autistic people.

Literally every person is different. Didn’t know I had to say that, but apparently I do. Why would you expect me to be like another Autistic person you know? I don’t shout “You’re neurotypical? But you’re nothing like my friend Sally!?” into your face while maintaining a disgusting amount of gross eye contact. Because it’s silly. Because it doesn’t make sense. Because it’s absurd.

Bottom line–humans are all complex and highly different beings. No two of us are exactly alike. Why on earth would you expect two Autistics to be exactly alike? As the popular phrase goes, “If you’ve met one Autistic person… you’ve met one Autistic person.”

3) “Yeah, ok. We’ll go with that” (insert nasty, sarcastic tone and/or eye roll for bonus jerk points)

Ohhhhhh boy.

So, first of all, you’re heavily implying I’m a liar. You’re implying that my psychologists and therapists are incompetent or misdiagnosed me. Or that I somehow tricked two mental health professionals doing independent assessments of me.

But more than that, you are denying my neurology. You are denying the entire structure of my brain, the way I think, and the awesome things that come along with that. You’re also denying the terrible things that come along with it. You are denying my experience.

You are being ableist, denying my struggles of past and present, denying my identity, being condescending and patronizing, and just generally being an unkind human being all in one go. It’s not a good look…

Bonus “Avoid alienating or pissing off an Autistic” Guide

4) “You hide it so well!/I never would have guessed!”

This. is. not. a. compliment.

I mean, I guess I kind of slightly sort of maybe a little get where people are trying to come from with this? Finding out that the person in front of you is a literal coping and masking wizard who is 1000% of the time exhausted is a lot. It is a feat. But it’s also messed up.

Think about it this way. As a kid, I knew very quickly in school that I was different. I didn’t have a name for it, but I knew. I was bullied relentlessly and I didn’t understand why. I even had a teacher who routinely bullied me.

It was so bad that I started to try to MacGyver together social camouflage to avoid sticking out. (Read 1: Operating Manual for a bit more on that.). My masking, ability to “pass” as neurotypical, and generally inflict extreme harm on my introverted self in order to avoid bullying and aggression is not only an exhausting production that I just don’t know how to turn off, it is the result of years of agony and bullying. Craving friendship and acceptance so much that I mimicked peers I admired. Subconsciously suppressing my neurology, personality, and desires to get by and survive.

After all, that’s such a huge part of why I started this blog—to explore who I authentically am at my core. Because I have had to put so much of who I am away in a little box on a shelf in the back of my mind. And I’m just starting to unpack that box now.

5) “You’re so high functioning!”

There are a few phrases that are bound to make most Autistic people angry, and this is one of them. For one thing, functioning labels are just completely skewed and narrow. Functioning labels hurt all Autistics. Period. (I’m not going to go too far into this, but will insert a link once I find a good one.)

You don’t see the emotional, mental, and physical fallout from my exposure to things like overstimulation, sensory overload, long periods of social activities, or a scary experience. You don’t see my meltdowns or shutdowns (usually) because I have learned to plan out my energy and ability to cope for any given situation or day. This is closely tied to Number 4. Performing “high functioning” comes at a high cost and is just not accurate.

6) “I’m so sorry.”

Don’t be. I love me. I love my neurology (most days). The issues I deal with are related to society:  ignorance, exclusion, assumption, aggression, bullying, inaccessibility, sensory assault, ableism, etc.

7) “Oh, like Sheldon from Big Bang Theory/Rain Man/(Straight white cis man or boy)?”

No.

A photo showing two people sitting at a table, having a discussion. There is paper and pen in front of them, and one person is actively listening to the other.
Listening time! Photo by mentatdgt on Pexels.com

How you should react to someone divulging information to you:

You may find yourself saying, “Okay, Alex. I think I know how to lessen my chances of pissing off an Autistic. So what do I do and say?” While I can only speak from my personal preferences and wishes, these are some things that I would personally love to hear when I tell people:

–Thank you for telling me.

–Thank you for trusting me with this information.

–Cool. My partner is too. (Notice how different this is from the comparison above in Number 2)

–I don’t know much about that. Are there any resources you recommend to learn more?

–I have some questions. Is it okay for me to ask you some?

–How can I better accommodate you?

–What are your needs? How can I help?

Autistic Collaboration Video!

“Who are autistic adults? Like you, we are each unique and you can find us in all parts of your everyday life, not just the stereotypical places you may expect. This April, we are proud to show how diverse autistic people are.” -Mikhaela

My friend and fellow Autistic Mikhaela Ackerman, who runs the blog Edge of Playground, and I have been meaning to collaborate for AGES now, and it finally happened! As April approached, we both found ourselves brainstorming ways to increase positive messages so that Autistics could see some wonderful things against the usual terrible things said about us this month.

Mikhaela had the wonderful idea to do this video, and I jumped at the chance. What a wonderful idea!! Please follow Mikhaela’s blog, Facebook, and Twitter. She is fantastic and very supportive and kind.

A transcript for this video is below.

A huge thank you, too, to the wonderful Autistic people who agreed to do this video!
You can find their information below:

Arianne Garcia– Stairway to STEM (@StairwaytoSTEM)
Yenn Purkis- Yenn Purkis’ Autism Books and Other Things.
Kylie Andrade- Life on the Spectrum
Shadia Hancock – Autism Actually
Kayla Smith – @beingkaylasmith
Adam Walton- The Proud Aspergian
Peri Savidge- Not Raingirl
Cynthia Zuber- The Neurodiverse Woman
Olivia- @chichirinuriko20 (YouTube)

#ActuallyAutistic #AutismAcceptance #AutismAcceptanceMonth

Transcript for “Who Are Autistic Adults?”, a collaboration by Edge of Playground (Mikhaela) and Seeking Sara: An Autistic’s Journey.

(guitar music)

A title screen with “Autistic Adults: Who We Are” written above a rainbow Neurodiversity infinity mark. The screen zooms out slowly to reveal a golden yellow background with many positive words on it including: creative, musicians, caring, proud, mentors, empathetic, thoughtful, spouses, hard workers, poets, interesting, funny, listeners, kind, authors, advocates, etc.

(soft drumming joins the guitar)

A black screen appears, then “A collaborative video organized by:” appears on the screen then fades.

A split screen with both creators’ information appears. On the left: A black background with “Edge of Playground, Tying your shoes is overrated” written and a picture of Mikhaela (a young, white woman) on a swing. A golden infinity mark is at the bottom of her side. On the right: A lilac purple background with the text “Seeking Sara: An Autistic’s Journey” at the bottom. A pink flower is next to a picture of Sara (a young white woman with blue hair), standing in front of Niagara Falls.

The text “Who are Autistic adults” appears on a black screen. (The guitar and drum music fade to the background and disappear.)

(Cheerful and gentle music begins)

Mikhaela (Edge of Playground) appears on screen wearing a floral top. “Autistic adults are everywhere. We are in all parts of your everyday life, even in places you might least expect. We are compassionate friends, artists, teachers, family members, professionals, and so much more.”

Sara (Seeking Sara) appears in front of a multi-colored Tie-dye backdrop. “Like you, we have different strengths and weaknesses. Our strengths are varied, and no two are the same. Success looks different for each person. And one is not better than the other.”

The screen cuts back to Mikhaela who says “We are Autistic people…”

Screen cuts back to Sara who says, “and we’re valuable.”

The screen cuts to black and the words, “Autistic people are just as varied as non-Autistics.”

Arianne, a young Latinx person with long hair appears “My name is Arianne, and I’m an Autistic adult. I’m an editorial board member for Stairway to STEM and a writer.”

The screen switches to Yenn, a white person who is wearing a bright blue top. “My name’s Yenn, and I’m an Autistic writer and advocate.”

Kylie, a young white woman, appears on screen sitting in an armchair. “My name is Kylie and I’m an Autistic advocate, aspiring public speaker, and blogger.”

Shadia, a young white woman with short curly red hair appears on screen wearing headphones. “My name is Shadia. I’m a proud Autistic advocate and I run my own consultancy and mentoring business, Autism Actually.”

Kayla, a young black woman with medium length hair appears on screen. “My name is Kayla Smith. And I am an Autistic adult. I am passionate about disability advocacy and fighting for Autistic rights.”

Adam, a white man with a mustache and beard, appears. “My name is Adam. I’m an Autistic writer, teacher, advocate, and supporter.”

The screen cuts back to Sara who says, “My name is Sara. And I’m an Autistic blogger. I like photography, books, and music. I loved in Japan for several years, and Japanese language is one of my passions.”

Peri, a white woman with dark hair appears. “Hi, my name is Peri. And I am a Autistic blogger. I am very passionate about writing and I feel like my Autism helps me express my feelings in writing like nobody else.”

Mikhaela reappears on screen. “My name’s Mikhaela. And I am an Autistic Corporate Compliance Officer. I am an Autistic advocate and also hold a Juris Doctorate in Law.”

Cynthia, a white woman with glasses and a winter hat and jacket appears. She is standing outside. “My name is Cynthia. I’m a blogger, writer, and advocate at The Neurodiverse Woman. I love to write. I love to cook. I love to be active and go on walks.”

Olivia, a black woman with buns in her hair, appears. “My name is Olivia. I love anime. I like studying Japanese. And I love animals! So yeah!”

Adam reappears and says, “I work for the government at the moment. And I used to work as an English teacher.”

Kylie reappears and says, “I’m creative, compassionate, hardworking, and an insightful individual.”

Shadia appears on screen and says, “I love animals, art, music, and writing. And my dream is to run my own rescue and rehabilitation sanctuary and provide animal-assisted therapy for Neurodivergent individuals.”

Cynthia says, “I love to play tennis, go to hear live music, and hang out with my pets.”

Mikhaela says, “My passions are traveling, reading, writing, and yoga. I’m also a certified yoga teacher.”

Sara appears and says, “I’m a very empathetic and compassionate individual who looks out for my friends.”

Arianne reappears and says, “I’m also an artist and musician. I’ve been singing since before I could talk and I’ve been playing clarinet for 17 years.” Arianne smiles widely at the camera.

The screen cuts to a black background with the words, “You are valued.” In big letters.

Credits begin to roll.

(guitar and drum music from the intro replays)

“Thanks for watching!! Organized by: Concept and Script’ Mikhaela Ackerman. Production and Editing: Sara Earhart. In order of appearance: Mikhaela, Edge of Playground. Sara, Seeking Sara. Arianne, Stairway to STEM. Yenn, Yenn Purkis’ Books. Kylie, Life on the Spectrum. Shadia, Autism Actually. Kayla, @BeingKaylaSmith. Adam, The Proud Aspergian. Peri-Ann, Not Raingirl. Cynthia, Neurodiverse Woman. Olivia, Olive the Lupus Patient.  Music credits: “Beyond the Line” by Benjamin Tissot, bensound.com. “Beautiful Morning” by Mixaund, mixaund.bandcamp.com”

End of transcript.

23: Sensory Series (2) “Picky” Eater

For as long as I can remember, I’ve been ashamed of what I do and don’t eat. The stigma of being a “picky eater” has followed me around my whole life, bringing comments (and no small amount of exasperation) from family, friends, wait staff, and strangers alike.

Recently I’ve been examining why I struggle with certain foods and have come to the same conclusion as I have with much of my post-diagnosis self-exploration:  I’m actually incredibly strong and my experiences are real and valid.

Why am I so “picky”? Well, if you could experience my senses for a few hours, I bet you’d be more understanding, less judgmental, and I’m fairly certain you’d stop using the word “picky” pretty fast. Often times, I want desperately to like a food, to be able to order anything at random, or to just eat whatever is put in front of me without hesitation. But for me, food is almost always a relentlessly overpowering experience.

It’s not just taste that’s overwhelming–it’s texture, smell, color, consistency… What if I told you certain foods literally hurt to eat? That some trigger vivid memories that are disorientating and distressing? That some foods make me nauseous and panicky? Throw in IBS, general stomach and digestive issues, multiple food allergies and sensitivities, and it’s actually pretty impressive that I eat at all.

TASTE

I really struggle to eat bitter, sour, or spicy foods. The problem is, what you consider overwhelming is likely not what I do. Remember, all of my sensory input is dialed up and extra-sensitive. I’m not just being picky; I’m not overreacting. I really am experiencing things more intensely than most people. What you might find pleasant with just a hint of a kick might feel like an absolute assault on my senses.

Another factor is that sometimes my sensory input seems to go haywire somehow and, for example, a bitter taste might register just like bile to me. No one else eating the same dish is having the problem, but I literally cannot eat another bite because it legitimately reminds me of throwing up.

TEXTURE

Texture is a huge factor as well. Texture no-go’s for me include: peaches, coleslaw, celery, Japanese konyaku, warm peanut butter, etc. I can’t really explain why some of these things are difficult for me, but the sensation can be so uncomfortable that my jaw locks up. This can be a full-body experience, causing pain, discomfort, chills, headaches, and tics if I’m required to eat something for whatever reason.

TOO MANY TASTES AT ONCE

Even if I like certain tastes, too many at once is also overwhelming. There are not many meals I order out that don’t include me saying, “I’d like the (meal), but without (list of ingredients). So basically just the (stuff I still want).” The things I take off make the difference between me being physically able to eat the dish and literally not being able to eat it without melting down or extreme distress.

IN CONCLUSION

I debated making a list of all the foods I struggle to eat, but decided against it. Maybe some day I will, but for now, I still struggle with embarrassment from a lifetime of stigma related to what’s difficult or painful for me to eat and I’ve decided to focus elsewhere.

I’m currently on a journey of self-acceptance and I’m finding it more productive to focus on my “Can Do” list than my “Can’t Do” list. I’ve come a long way in trying new foods, and I’m working on becoming more accepting that 1) I function differently and it’s okay not to eat foods that are difficult and 2) it’s actually impressive what I do eat and I should give myself more credit.

BONUS:

STIMMING THROUGH FOOD

While tracking what foods are difficult for me to eat, which I refuse to eat, and which I love to eat, I noticed that I draw on certain foods as a massive comfort; I actually stim by eating these foods, usually in a ritualistic manner. They include foods like applesauce, crackers, pretzels, oatmeal… notice a pattern? When I’m exhausted or overloaded, I can’t deal with any intense or unpleasant colors, smells, textures, or tastes. Eating these familiar, bland foods is a source of comfort and helps me calm down. Now that I have identified that I am stimming through food, I have consciously begun working on stimming in other more healthy ways (allowing myself to rock, hand flapping, touching soft things, listening to a song on loop, etc.) to try to avoid stimming through binge-eating. (See 25: I have an eating disorder. for more on that.)

Click here Sensory Series Part 1, 16: Sensory Series (1) Auditory.

20: Empathy (Part 3) The Good!

As promised in 17: Empathy (Part 1) and 18: Empathy (Part 2), I’m now tackling the positive aspects of being an “empath,” or hyper-empathetic person. In Part 1, I wrote about the stereotype that Autistic people don’t experience empathy and how—not only do I empathize—I actually experience hyper-empathy. In Part 2, I focused on media consumption and how careful I have to be with what I watch, listen to, or read due to hyper-empathy. But the focus of both posts was on the negative or tiring aspects of being hyper-empathetic and how it can be a burden. Today I really wanted to address the wonderful side of being so sensitive to others’ emotions.

  • I experience positive emotions strongly too

In Empathy (Part 1), I wrote that “I feel other people’s pain so innately that it can be so debilitating I have to try to unplug my feelings and let myself grow cold and unattached to survive.” I also described “taking on other people’s pain.”  But it’s not just the negative or draining emotions that my hyper-empathy exposes me to!  I get to experience the positive ones too!

When someone around me experiences a strong positive emotion—whether they be on screen or in my life—I am affected. If someone is feeling sheer happiness, I soak up the light from that emotion. I can become giddy and joyful when someone near me is in a similar state. I can cry from happiness and flap my hands with excitement when a character I love is happy. I sometimes have to clamp down on my emotions so that I don’t cry happy tears (or otherwise outwardly show just how happy I am) and embarrass myself when riding the waves of someone else’s happiness. The more deeply connected I am to someone, the more affected I am. It’s wonderful to experience such sincere happiness when others are happy.

  • I connect deeply with characters in media and my soul is moved by music

In Empathy (Part 2), I wrote about the negative ways that media can affect me and that “[d]isconnecting from or not engaging with certain types of media has been essential to my survival as a hyper-empathetic person.” But just as I am positively affected by real-world emotions, I am also affected by positive emotions in media.

I sometimes connect with characters in books, TV, movies, and games so strongly that it feels like I have lived their lives. I hope some people reading experience what I’m talking about and can relate. It can take me days to disconnect myself from a good book and it leaves me with more insight and understanding about other peoples’ lives and experiences. It’s an enormous gift to be able to carry over what I learn in books into reality and further empathize with others.

The emotion in music often moves me to tears and fills me with such a deep peace and tranquility that I can physically feel something in my chest fill with happiness. Sad music can unplug a deep sadness within me so that I can begin addressing it; joyful music can alter my state of mind and leave me feeling energized and full of possibility. Music moves me in ways that I can’t even really describe fully in words.

  • I’m great with kids

I started babysitting around age 12 and loved it straight away. From there I became a part-time preschool gymnastics teacher, then a counselor’s assistant at a camp, an assistant teacher, and finally an English and reading tutor. I love being around kids and young adults, and I think one reason I’m so suited toward childcare and teaching is my ability to empathize.

I told myself when I was young that I would try my best to never forget what it felt like to be a child:  the changes, the anxieties, the frustration, the lack of control… and for the most part, I feel that I’ve stayed true to that promise. I can empathize with kids and speak with them from a place of equality whenever possible. Showing true caring for a child means that I’m often let inside their worlds to see the joys, the anxieties, the excitement, and the stresses…and I cherish that gift!

  • I’m a good partner

My ability to empathize deeply makes me a patient and loving partner. When my wife is happy, my mood is positively affected! When she’s unhappy, I can empathize deeply with how she is feeling and come up with useful ways to help and support her.

  • I am a good listener and ally to my friends and family

As I mentioned in previous posts, my ability to hyper-empathize means that friends and family often confide in me. While this can be tiring, it’s also a gift that I truly cherish. I experience great joy knowing that my loved ones feel they can trust me to listen to things that are going on in their lives.

  • I can empathize with strangers

When I was 7 or 8, I heard about a flood that happened in a different state in the US. There was one church that was severely affected so much so that members could no longer enter the building, much less worship there. I had never been there, never met anyone in the congregation, nor met anyone affected by flooding, but I felt such grief that I was moved to do something. I wrote them a letter and (with my parents’ help and permission), donated my entire allowance savings to their rebuilding efforts.

Around the same age, I decided that I would foster or adopt a child someday. Hearing about kids in the system broke my heart and I was adamant that I would someday provide a loving home to a child in need. (Someday, I hope this will be a reality!)

My hyper-empathy enables me to relate to and feel for strangers—people I have never, and may never meet. It makes me a compassionate, caring, and deeply sincere person, and I cherish this ability.

So there you have it:  some of the many positive ways that being hyper-empathetic can actually be a wonderful thing and something that heavily influences the way I view and interact with the world.

18: Empathy (Part 2)

Hyper-Empathy and My Media Choices

I began writing about my experiences as a hyper-empathetic Autistic person in 17: Empathy (Part 1) and quickly realized that I had too much to talk about in just one post.  Today will continue my look at empathy–this time through the lens of my media consumption.

As I mentioned briefly in Part 1, I struggled a lot when watching TV or movies as a child until I realized that I was having extreme issues over-empathizing with characters or people on screen. If I’m being honest with myself I sometimes still struggle hugely with this, but I’ve learned to be much more selective with what I watch.

One clear example of this is the show “America’s Funniest Home Videos.” I know many of my readers aren’t from the US, so I’ll explain. On this show, viewers watch home videos sent in by other viewers and (hypothetically) laugh until they cry. My family used to watch the show pretty regularly. Some of the videos are adorable, others are sweet, and some are funny. But I realized after a while that I was really tense while watching and noticed I was most upset when certain kinds of videos came on. There are a good number of videos sent in of people slipping, falling, crashing, or otherwise hurting themselves on camera. I hate those!

I understand logically that probably no one was actually seriously hurt in these videos. I realize that people probably wouldn’t have sent them in if they had! I get that the person in question may even have found it funny themselves. But it doesn’t really matter. For me, there’s truly never been anything funny about a person in that kind of situation—even if they’re perfectly fine. The “funny” videos where someone dropped a birthday cake or scared their child while wearing a mask aren’t any better for me. I empathize too much and feel sad and guilty about the dropped cake or upset and betrayed by the parent who frightened the kid.

There are certain storylines in other shows and movies that I usually don’t enjoy watching either. One great example is the infuriating “barter” episode. The one where a character runs around for the entire episode trying desperately to reach some goal only to fall continually just short of it. Where a character has a priceless object —let’s say, a vase— that they want to trade for a famous baseball card while at a flea market. Unfortunately the baseball card collector has her fair share of vases at home and refuses…but mentions she would just love that shiny red action figure at the table next door. The main character rushes to the action figure collector who tells them they aren’t interested but really wants the antique music box sold by their competitor… The story goes on until our hero has traded their vase for a candelabra for a chess set for a Pac-man lunch box for a whole host of things… all until they get that shiny red action figure and go to the baseball card vendor, only to find that she just sold it. You know–the really, really frustrating and infuriating episode trope. That’s another example of something that’s meant to be entertaining but makes me incredibly anxious and upset.

I could go on and on with media:  books, news, video games, movies, TV, music, etc. I have to be very careful about what media I consume for many reasons, but empathy is one major one. Watching the news has almost always caused me extreme anxiety or even panic attacks. Certain songs can send me quickly into a spiral of sadness and anxiety. Books can pull me into their pages and make me over-relate with characters who exist only in the ink on a page. Horror and gore are things I cannot stand, even a little. Disconnecting from or not engaging with certain types of media has been essential to my survival as a hyper-empathetic person.

Over time I’ve gotten better at both selecting media and at recognizing when I’m over-empathizing. These are some things that help:

  • I don’t usually watch reality TV (well, that’s not just due to empathy…).
  • I avoid depressing or distressing movies or shows.
  • I mostly avoid going to the cinema (big screen=big impact, plus no pausing).
  • I’m very selective when keeping up with the news.
  • I remind myself during difficult scenes that actors aren’t really in the situations they act in.
  • I mute dramatic music when I notice it affecting me in a scene.
  • I do something else while I watch to ground myself in reality and disconnect more from onscreen emotions.

I’ve found that a healthy mix of avoidance and coping mechanisms means I can enjoy more media. I still tend to watch mostly children’s shows, cartoons and anime, and fantasy/scifi movies and TV though. The rest just don’t usually interest me and these genres pose less of a potential threat to my mental and emotional health.

So there you have it! This is another post that makes me feel vulnerable and I’m still processing why that is. Maybe because I’m tackling a stereotype that is still so widely believed. Maybe because I’m afraid people will see my sensitivity and empathy as weird or signs of weakness. Maybe because I’m afraid people will discredit and invalidate my experiences. I’m not really sure yet, but I also think it’s important for me to be honest and share true insight into the way I experience the world.

The next time I post about empathy, I want to focus more on the positive aspects of being hyper-empathetic!

Click here to read 20: Empathy (Part 3) The Good!

17: Empathy (Part 1)

There’s a misunderstanding still floating around that Autistic people don’t feel empathy. This is inaccurate and misleading. True, some Autistics have difficulty with things like social imagination and being able to guess what someone might be feeling. Some struggle to understand non-verbal cues and expressions and so might not react in a way that’s socially expected. Some Autistics struggle to express what they are feeling; others have difficulty understanding just what it is they are feeling. Some don’t express themselves verbally. Some may express empathy and feelings in ways others misinterpret or don’t recognize. And some struggle with these more than others. But that doesn’t necessarily mean they lack the ability to empathize.

Just because someone is not responding to something in a way you might expect, that doesn’t necessarily mean that they aren’t internalizing it and reacting to it. A reaction may come out later once they have had time to process it. It may come out in behavior later. It may come out subconsciously. Or it may come out in an act that you don’t see as connected or related. It may just stay internalized and bottled up. There are many possibilities, but I don’t believe that lack of empathy is an Autistic trait.

But as always, I can only write from my own perspective about my own experiences and observations. All Autistic people are different just as all neurotypical people are different. I don’t and can’t speak for anyone but myself, but I hope that my words will resonate with people and provide some level of insight.

I’ve been struggling to write this post for over a week now and realized I just have too much to say about empathy so I’ll break the topic up into several posts.


I don’t lack empathy. I feel empathy in a deep, gut-wrenching, fatiguing, and heartbreaking way. Some people might call it being hyper-empathetic, others might call it being an “empath.” All I know is that I feel empathy so strongly that I often have difficulty separating my own feelings from those of someone else. I absorb emotional “energy” to the point that I become absolutely weary from it. I feel other people’s pain so innately that it can be so debilitating I have to try to unplug my feelings and let myself grow cold and unattached to survive. I don’t feel too little; I feel too much.

For as long as I can remember, I’ve felt this level of empathy. My childhood psychologist noticed how much I struggle with the deluge of emotion in the world and was always saying, “Stop taking on other people’s pain!” She’d have to remind me again and again to let it go and move on–that person would have to deal with their own pain and feelings and I had to let them do that.

As a child and teen I struggled a lot when watching TV or movies until I realized that I was having issues over-empathizing with characters or people on screen. If I’m being honest with myself I still struggle hugely with this, but I’ve learned to be much more selective with what I watch.

Hyper-empathy and “taking on” other people’s emotions are things I still struggle with. I’ll dwell on what others are going through and can’t seem to let it go. In some ways, it’s a wonderful thing to be able to do. I’ve always been someone that friends come to when they need a listening ear and I truly cherish that role and the trust people place in me. But on the other hand, sometimes empathy can knock me flat on my back for days.

Hyper-empathy isn’t always a bad thing! But that’s a post for another day….

Click here for 18: Empathy (Part 2) Hyper-empathy and My Media Choices

 

Click here for 19: Empathy (Part 3) The Good!

 

[image description: A green garden with an old statue. The statue is of a woman holding a pot on her shoulder that is spouting water from it. It is cracked and worn by time.]

 

10: What Not To Say

What Not To Say

So I’ll admit, I haven’t had a ton of experience in this yet because I haven’t told many people about my diagnosis (and therefore haven’t gotten bad responses!).  Never mind. That ship has sailed.

But I know what I fear people will say. I’d love it if everyone could take a quick look at these things and try to avoid them. But I also don’t want people feeling like they can’t talk to me and if they make a mistake, it’s game over! I understand that you might feel put on the spot. I understand that you might mean well with a comment. It’s ok to make a mistake and say something wrong as long as you’re open to learning why it’s hurtful and changing what you say.

Here’s a comic by Beth Wilson that really sums up what I’d like people to avoid saying. Please go check out her site, Twitter, or Tumblr, and consider donating to her site:

Doodle Beth's comic, "What Not to Say to an Autistic Person" There are four panels showing Doodle Beth getting more and more upset, finally pulling at her hair and gritting her teeth. Many speech bubbles surround her saying, "You don't look Autistic." "Everyone is a bit Autistic." "You must be high functioning." "So you're like Sheldon then?" "We're all on the spectrum." "Everyone struggles with stuff like that." "Don't let your Autism define you." "Is there a cure?" "You're nothing like my Autistic child." "Autism is so over diagnosed these days." and "Oh, you mean Aspergers, not REALLY Autistic."

I’m not going to go into much about why I don’t want people saying these things to me (or any other Autistic person) because it’s already been done before!! These blogs, articles, and videos are done by Autistic people who have gone through this, so I want to feature their experiences and advice.

Here’s some other Autistic peoples’ lists and explanations:

  1. Amythest Schaber- Ask an Autistic #12: What Shouldn’t I Say to Autistic People? video
  2. A. Stout’s post on TheAutismSite: 11 Things Not to Say to Someone With Autism
  3. BBC Three’s “Things Not to Say to an Autistic Person” video
  4. Lydia Brown’s article for The Mighty.
  5. Chris Bonnello- “Autistic Not Weird” blog posts:

You can also check out my post 12: Asperger’s or Autism? FAQ for more info on language and my preferences.

No need to read and watch all of these links above (unless you want to, in which case ALL THE BROWNIE POINTS!), but at least checking out some of these resources would mean a lot to any Autistic person you interact with.

Related: 29: When You Don’t Believe I’m Autistic

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