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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!

Used Empathy Part 2

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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, theory of mind, 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….

 

16: Sensory Series (1) Auditory

Many Autistic people struggle with sensory input–whether it be hypo- (under/low) or hyper- (over/high) sensitivity. All of my sensory experiences are on the hyper-sensitive end. This means that the world is a very overwhelming place for me a lot of the time. I wrote about 5: Sensory Overload & Control in a previous post.

Today’s post will start my “Sensory Series” where I talk about how I experience each sense individually and how I cope with such strong sensory input.



Hearing is the sense that gives me the most trouble to the point that I often wish I had a mute button for the world around me. Sometimes I even wonder what it would be like to have a cochlear implant that I could detach when sound was just too overpowering. The world is such a loud place and it seldom stops talking.

Some days are better than others. Sometimes my brain does a better job at filtering sounds toward the back of my mind, but most days the sound comes at me all at once in a jumble of confusing, overwhelming chaos. Each sound jockeys for position at the front of my mind as each insists I pay close attention to its deafening shouts. Its an exhausting experience to be constantly inundated with such a loud, insistent world without the ability to filter any of it out.

Even now while I write this post in a relatively quiet room, sound is everywhere. The high-pitched chirping of a bird outside the window is joined by the electric whine of the TV (which is off), the shower running upstairs, a family member walking on the floor above me, a goose in the front yard honking incessantly, the walls and windows settling, the wind swooshing through the trees out back, an electric toothbrush pulsing, a door opening and closing, the hum of the ice maker, the neighbor’s car door slamming…. All loud. All insistent.

I am very easily startled, overwhelmed, or distracted by sounds. I’m likely to jump at a sudden loud noise and it can often be very painful. A lot of sounds are physically painful to me:  fireworks (which I also feel as a punch in the chest), alarms, sirens, anything shrill, etc. Some are less painful but more overwhelming; those make me feel like I’m drowning:  crowds, loud music, revving engines, etc.

These are some of the most extreme sounds for me:  fireworks, fire alarms, sirens of any kind, pitch-bending (sliding between notes), dentist drills, wood saws or drills, squealing bike brakes, shrill voices, whistles, people whistling, motorcycles revving, airplanes overhead, loud voices/shouting, loud and unexpected sounds in general, high-pitched noises, tapping or clicking, people talking behind me, crowds, out of key music, hairdryers, vacuum cleaners…. 

While I doubt that these things are pleasant for most people, they can be absolutely excruciating to me.

Below are some examples of my intense auditory sensitivities to give you a better idea of my experiences:

ELECTRONICS

I did an experiment with a friend once while studying abroad. After months of being annoyed by the high-pitched whine of the old TV in the corner of the dorm kitchen, I finally grumbled, “It’s so LOUD!!” My friend looked at the sumo match on the TV, back to me, and then back to the cheering crowd on the screen. “Loud? Ok, I’ll turn it down.”

I shook my head. “Not the program. That shrill sound that comes from the TV.” He cocked his head and muted the TV–listening intently. To my surprise, he said he couldn’t hear it. I was completely shocked.

You can’t hear that? Seriously? It’s all I can hear…” We decided to do an experiment. I turned my back on the TV. He kept the volume muted and silently turned the TV on and off and I told him whether it was on or not based on the whining sound. I left the kitchen and started to walk down the hallway, calling back to him “ON! OFF!!… ON!OFF! No, STILL ON! Ha, tricky!” as I passed room after room.

I made it all the way down to the end of the hallway where I could still hear the faint sound of the shrill TV. When I got back into the room my friend was shaking his head.  “Is that why you always turn it off when no one’s watching it? I thought you just really hated sumo or something.”

FIRE ALARMS

One year while teaching in Japan, my desk was located directly beside the fire alarm. I didn’t realize this because it looked differently from the ones I’m used to seeing. (In some ways I’m glad I didn’t know because if I had, I may not have been able to relax.) One day, we had an unexpected fire drill and the alarm blared directly at me. It was actual physical agony. I can still remember the physical pain throughout my body and the extreme nausea. I legitimately almost threw up. I was on edge for the rest of the day—jumpy and fidgety until I could go home and sit in a dark, quiet room with both earplugs and headphones.

When I was a kid and there were safety drills at school, I would be a completely wreck waiting for the alarm, during, and for the rest of the day. It would make me anxious and physically ill for the entire day. I remember trying to be “tough” like all the other kids who could walk down the hallways laughing and joking, but I always had to shove my fingers in my ears and grit my teeth as I raced out of the building.

LOOPING

Sometimes a noise or sound gets stuck in my head. I call this “looping” and it can be maddening. Think about something like nails on a chalkboard. (Even typing that makes me physically uncomfortable. But that cringing sensation that a lot of people experience is how many sounds feel to me!) Imagine that sound getting trapped in your head and sort of echoing again and again and again–long after the actual sound has passed. This happens to me fairly frequently and it’s extremely painful and distressing. 

It’s important to note that auditory sensory overload isn’t always related to sounds I don’t like. When I’m overstimulated, I can’t handle any sound. Not my favorite song or an otherwise pleasant white noise or even the sound of a loved one’s voice. At that point, any sound is toxic until I recover.



Coping

Ear plugs: I wear earplugs while I sleep and I have done for at least a decade. I can’t fall asleep without them; I can’t even begin to relax and let down my guard without them. I’ve started to bring earplugs everywhere I go and wear them in restaurants especially.

Noise-cancelling headphones: When I first got my headphones, I wore them every chance I got but found that I panicked when I had to take them off for work. I think they actually made me more sensitive to sound and that was a horrifying discovery. Now I only wear them when I really, really need to avoid a sound that earplugs just won’t help with.

Stimming (Blocking or recovering from bad sensory input with good/neutral stimuli): Humming or singing softly to myself is one of the most effective tools to help me deal with auditory overstimulation and sensory overload. This works by blocking out other sounds and giving me some control over what I’m hearing. Unfortunately, it’s something that society has made me feel uncomfortable doing in public, but sometimes I can’t help but do it to survive. I’m getting better at doing it in situations where I need to.

Silence: I bathe in silence whenever possible. Silence is a breath of life.

Used Sensory Series 1 Auditory

15: Diagnosis & Coming Out

If you haven’t already, please read my blog post “13: Women and Girls” to better understand this post!

Welp, here it is!

Today is the day that I share my news with friends and family via Facebook. I was originally going to share my blog with everyone on Friday, but I’m too anxious to wait another day. *tries not to vomit*

One major reason I started this blog was to have a vehicle to come out to people about being diagnosed as Autistic. Masking my Autism has become so incredibly tiring and I’m really burnt out. I also feel like I’m hiding such a huge part of myself from the people I care about! (See: 6: Why I’m Writing This Blog for more on that.) I’ve been feeling pretty lonely and isolated lately and I want that to end.

So here we are. The story of how I got diagnosed.


Evaluation in Japan


I started my journey by accident in 2015.

I was working in Japan and seeing a Japanese psychologist (who’s fluent in English) for help with the grieving process after losing several people close to me. I’ll call my therapist “S” here for the sake of privacy.

Throughout the years I had sometimes wondered if I might be on the Spectrum, but would pretty quickly decide that it must be impossible–I didn’t fulfill this criteria or exhibit that trait, etc. But I eventually stumbled upon some resources about how women on the Spectrum often present very differently than men. (See 13: Women and Girls for more info on that.)

After delving into research about Autistic women, I tentatively started to let myself consider that I might really be on the Spectrum. I began to take some notes about my life and the way I experience the world as I continued to research about Autistic women. (The baby drafts of this blog!!)

I figured that someday–if I decided to be formally assessed back in the US–I would have all that stuff written down already. 

But I didn’t bring it up to my therapist. I was too afraid that she wouldn’t know about women presenting differently and about masking. I was terrified she would immediately shoot me down without assessing me. (It’s not that I was set on being diagnosed as Autistic. I was set on being assessed accurately and thoroughly–whatever the result.)

So I continued to quietly gather information and write down my self-reflections without telling anyone. It was an isolating, but adrenaline-filled time.

It wasn’t until 2016 when I had been seeing S for a full year that things changed. My family had come to visit me in Japan and I showed them around several cities throughout the country, acting as both guide and interpreter. When we were in Tokyo, I experienced an intense bout of sensory overload that led to a subsequent meltdown. (You can read about it in 5: Sensory Overload & Control.)

When I returned from the trip and S asked how it had been, I finally told her. I told her about the sensory issues I’d been having more and more difficulty with, the meltdown in Tokyo, the social fatigue, the wondering, the doubting, the researching–everything. Our session ran over time as she patiently listened to everything spill out. Then I waited as she thought and chose her words carefully.

To my surprise, S had been wondering if I was on the Spectrum as well.

I was really taken aback. I sort of sat there in shock for a moment before a huge smile crept over my face. “Really??” I exclaimed, euphoria rushing over me. I was just so relieved that she was taking me seriously.

I printed out the notes I had been writing on my life and handed them over to her during our next session with an anxious excitement. When she returned the pages the following meeting, we talked them over in more detail and she agreed again that she suspected I was on the Spectrum. She asked me to continue writing and agreed that it would be useful if I chose to seek formal diagnosis someday back in the US.

Over the course of the next year, I wrote feverishly. I couldn’t stop. I literally couldn’t stop scribbling insights and realizations onto whatever surface was available. So many things started to make sense about my life and I felt such a sense of relief come over me.

But I still wondered. I went back and forth between good days when I felt more “normal” and questioned myself, and bad days when the truth was presented and reaffirmed right before my eyes through a meltdown or extreme social misstep. I bounced back and forth between denial and acceptance.

Finally, as my time in Japan came to an end, S presented me with a referral letter. At this point, she had seen me in regular sessions for two years, read up on recent research about Autistic women published in psychology journals, and read all of my writing.

On July 10, 2017, she handed me a letter which contained the lines:

“While I have seen Sara, she has shown similar characteristics to Asperger Syndrome and Autism, such as sensitivities to various stimuli, panic attack due to sensory overload, fatigue after social interaction, and need to follow schedule rigidly.”

She went on to write that she believed me to be on the Spectrum and was referring me for formal assessment and diagnosis.

That letter was such a gift. I knew that with it, I wouldn’t have to start over completely when seeking diagnosis. I knew I’d have someone in my court (so to speak) and wouldn’t feel like I was going into an assessment completely un-supported.



Assessment and Diagnosis in the US


I began seeing my psychotherapist, M, soon after I returned to the US to get some help adjusting to life back in the US and to address a possible eating disorder. (I will address my eating disorder in a future post.)

After a few sessions, I felt comfortable enough with M to bring up Autism and I gave her the letter from S. She said that she would evaluate me over time as she got to know me, so we continued our sessions and left Autism on the back burner.

By late November of 2017, I wasn’t writing my book anymore. Not for months. I felt like I had stagnated in my self-exploration and realization. After digging deeper, I realized that I was once again doubting if I was actually on the Spectrum.

I brought it up to M and we explored why I was feeling this way. During that session, we realized that–after the initial deluge of self-realization and discovery–I had adapted and started doing things in ways that minimized meltdowns and sensory overload. I wasn’t “less Autistic,” just coping with things better and going through a time when my traits weren’t as noticeable–even to myself.

Next session, she brought in the DM-5 (The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition) and we sat down and went over the diagnosis criteria.

By the end of the session, I had my final, irrefutable proof.  I am Autistic.



I was expecting my road to diagnosis to be an excessively difficult, expensive, humiliating, and stressful process. I know that for many woman, it can be.

I’ve been very lucky. This has instead been a journey of good luck, strange happenstance, and unexpectedly compassionate therapists. 

After diagnosis, I’ve been hit with so many unexpected emotions:  fear, sadness, excitement, regret, doubt, rage, determination, grief, elation… It’s been an ongoing, never-ending process as I come to terms with who I am.

I feel a sense of grief and loss that I wasn’t diagnosed sooner, but also an odd and bizarre relief that I wasn’t. I feel excited that I finally understand myself. I feel fear for the future and uncertainty as I wonder what the future holds. I feel an internal struggle as I decide what my new boundaries and limits are, and how many of those are worth pushing and how often.

Recently, my overwhelming feelings are isolation and insincerity. More than any of the other emotions, these are ones I can’t bear anymore.

As I share this blog, I feel utterly vulnerable and more than a little terrified. But I also feel excited. I feel free. There’s a freedom that comes with realizing that I can’t control how people react to my coming out. I can’t control it, so why worry about it?

No matter the reactions of those I care about, this is a truth that needs to be shared. It’s time for me to come forward and say, “I am Sara. I am Autistic. I am me.”

14: Fibromyalgia & Chronic Fatigue

Fibromyalgia and the associated chronic fatigue are also things I am passionate about talking and writing about more publicly. They are invisible disabilities that I deal with every day. Fibromyalgia puts significant strain on my pillars and I have to be very careful to take care of myself and manage my pain so that I can function.

Last year I participated in an event called “Keep Talking: a Storytelling Event” in Cleveland, Ohio where I shared the story of my diagnosis. It was a really nerve-wracking experience to get up on stage in front of a crowd and be so vulnerable. But it was so rewarding and cathartic too!

In future, I’d love to talk about my Autistic journey on stage!

Below is the YouTube video (audio only) of my performance.

Note: I typed out closed captions to make the video more accessible. Please click on the CC button to turn them on. I’m also including the written text below for those who prefer reading it or use text-to-speech programs.

I am in pain. Every second of every day. I am in pain. Sometimes it’s a dull ache at the back of my mind. Other times it’s a throbbing, stabbing agony that keeps me bedridden. And I’m always exhausted. Next year will be the 10th anniversary of my official diagnosis, and I have literally forgotten what being energetic feels like.

It started in seventh grade. Sometimes I’d experience a random shooting pain in my leg. Had I somehow twisted an ankle during recess? But the pain would come and go, so I ignored it. Just growing pains. Nothing to see here. Nothing to worry about….

Going into the 8th grade, I started feeling generally unwell. I’d have an intense stomachache, a pain here or there, a crippling headache.… I started going to the school nurse more often than she deemed “normal.” I’ll never forget when she finally turned to me, sighed in frustration, and asked, “Have you been diagnosed with anything mentally wrong with you?” I’ll never forget, because that’s when I started to wonder myself. “I must be a hypochondriac. I’m just looking for attention. I’m just making it up. It’s in my head.” I started to ignore it. To stop mentioning it. To pretend it just wasn’t there.

I joined color guard in high school and I absolutely loved it! But toward the end of my second season I was having wrist and shoulder pain too severe to continue. I joined the choir, but struggled to stand through performances. I began to feel exhausted. I went to the choir director’s office to rest during free periods. Pretty soon I started seeing a chiropractor for back pain. It felt like I was hanging on by a thread. But I got through it and I graduated!

The first semester of college, I got the flu. A bad flu—one that sent me to the ER. And I just never really got better. Imagine your worst flu. Now imagine it doesn’t end. It doesn’t go away. No Tamiflu. No bouncing back. My body ached. Those pains I’d been feeling for years intensified. They’d now shoot up and down my body like fire and lightning mixed into pure hell. I felt nauseous all the time. I was beyond exhausted. This was a new realm of agony.

I began missing classes when the pain in my legs and back was so bad I was unable to stand. I started getting “medical escort” rides to class from campus security. I’d sit in the back of their patrol cars, literally locked in—with a metal grate between me and the driver—and they would drive me to my classes, glancing at me in the rearview mirror. I’d feel embarrassed because I was this outwardly healthy-looking college brat they were ferrying to class. I’d hobble into the building where I’d often be late to class because the football team would inevitably be using the elevators… In class, I’d sometimes have to lie on the floor to take notes because my back was spasming so hard.

During school breaks, I’d see doctors. My college spring break experience? Doctor visits. Over the years, I’ve had dozens of blood tests, biopsies, MRIs, cat-scans, EKGs, EEGs, spinal taps…. I saw an endocrinologist, neurologist, psychologist, gastroenterologist, then finally:  a rheumatologist.

I was 18, still a freshman in college, when I got an answer. The test was almost infuriatingly simple. A few touches here and there. Testing tender, inflamed points throughout my body…. Fibromyalgia.

I was so happy. I remember chattering to my father all the way home about how happy I was. If you haven’t waited years for a diagnosis, haven’t wondered if you’re crazy or weak or just “sensitive,” maybe you won’t understand. But I was just so relieved. Those of you doing the math will know:  I waited 6 years for that moment. And half of the time, I wondered if it really was all in my head.

But that relief soon became a devastating grief. A quick online search showed me- it’s not so simple as just getting a diagnosis. “Incurable. Treatment can help, but this condition can’t be cured.” So…no magic wand. No fixing me.

And this is the reality for an estimated 10 million Americans with Fibromyalgia. Unfortunately, my story is not uncommon. Those with invisible disabilities often go through years of misdiagnosis or being written off. Many are told “It’s all in your head”—often by medical professionals. I stand here, on this stage, in front of you all. And I look healthy. I look fine. But I’m not. And I probably never will be.

But… I haven’t stopped trying. I can’t. I refuse to stop living my life, even if it’s sometimes very, very hard to continue. In my junior year of college, I reached my lifelong goal of studying abroad. Twice. I graduated with honors with a self-designed major. Learned Japanese. Worked at the Smithsonian Museum. Lived and worked in Japan for three years. Joined a Japanese choir and competed in a national competition. Got married to my best friend.

Fibromyalgia is not fun to live with. But it has taught me some things. I learned who my real friends are—the ones who will stick by me even when I cancel plans for the 3rd and 4th time. I learned to trust myself and my instincts, to be my own advocate. I learned that I will push a broken body to its limits rather than give up. I learned that I can get through what feel like insurmountable challenges. And I learned to never, ever assume that someone who looks “fine” isn’t dealing with something enormous.

I will never say that I’m grateful for fibromyalgia. But I am grateful for what I’ve learned about myself. I am strong. I am a superhero. And I’m not giving up.

 Used Fibro

13: Women and Girls

Girls and women on the spectrum have been left behind.

It was once thought (and still thought by many!) that the number of Autistic boys and men far outnumber the number of Autistic girls. But now experts are realizing that we girls and women on the Spectrum just tend to present differently and are not being spotted using the typical “male criteria.”

There are a lot of key differences in the ways girls and boys typically present!

For example:

  1. Girls learn to “mask” their Autistic traits (as I learned to do) and are more able to “pass” as Neurotypical. The stress of doing this long-term leads to extreme stress, anxiety, and mental health concerns.
  2. Girls’ special interests may be less obviously “unique” and noticed. For example, knowing every fact about One Direction vs. knowing every fact possible about trains.
  3. Girls are much more likely to be misdiagnosed (bipolar, personality disorder, generalized anxiety, OCD, etc.)

My experiences written on this blog are not all that unique. Autistic girls and women have been undiagnosed and misdiagnosed left and right for ages.

I really hope that women like me who were always so confused about themselves and the world find my blog and realize that they are not alone. I hope that at least one person can have that epiphany and finally understand what’s going on with them. I want to help people have that “Ah HAH!” moment that 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. The chart can also be found on her sites, International Aspergirl Society and Help4Aspergers. Please consider buying a copy of her book or donating to her sites.

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.”

When I say that Simone’s research changed my life, I mean that literally. In the past, when I wondered if I might be on the Spectrum, I would pull up a list of male-typical Autism traits and almost immediately decide I couldn’t possibly be Autistic. But when I found these charts and matched so many of the traits listed, I finally allowed myself to start researching.

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 and women 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.



INFO TO GET STARTED

Aspergirls: Empowering Females with Asperger Syndrome  by Rudy Simone

I am Aspien Girl and I am Aspien Woman  by Tania A. Marshall, M.Sc.

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”

12: Asperger’s or Autism? FAQ

Here I’ll answer some of my anticipated FAQs.

1) Don’t you mean Asperger’s?

No, I don’t. I was officially diagnosed in 2017 with the DSM-5 (the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders) which was released in May of 2013. In this revised edition, “Asperger Syndrome” is now recognized as falling more clearly under the umbrella of Autism Spectrum Disorders. Asperger’s is Autism. So per this new criteria, my diagnosis was one of ASD. Thus, I am Autistic.

[Side note: Please don’t “correct” an Autistic person about how they identify themselves; it’s up to the individual. Many people will use Asperger’s, and that’s ok!]

Check out Amythest Schaber’s “Ask an Autistic #12: What Shouldn’t I Say to Autistic Peoplevideo. At about the 5:30 mark, they respond to the comments: “I think that you mean Aspergers.” followed by “Don’t you mean you’re a person with autism?” The whole video is great if you have time to watch it all.


2) Why do you use “Autistic person,” “Autistics,” and sometimes “Autists”? (Isn’t it “person with autism”?)

You can’t separate me from my Autism. It’s who I am! I am not a “person who suffers from/with autism” or even just a “person with autism.” Nor do I “have autism.”

I am Autistic. Period. It’s the way my brain is wired and the way I function. If I wasn’t Autistic, I would be a completely different person. I would have gravitated toward different friends, hobbies, interests, and studies. I would think, act, experience, talk, and function completely differently.  I am proud of who I am, and I just happen to be an Autistic person!

Lydia Brown, intern at ASAN (Autistic Self Advocacy Network), wrote a wonderful article in which she said:

“[W]hen we say “Autistic person,” we recognize, affirm, and validate an individual’s identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person — that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual’s potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people–and that that’s not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.”

Find Lydia’s full article here, and her personal blog here.

There are a ton of materials on this subject (person-first vs identity-first language) written by Autistics. It’s essential to respect every individual’s wishes on how they wish to be referred to.

Here‘s a blog post by Radical Neurodivergence Speaking.

And Bending the Willow’s tumblr post.

And here is Jim Sinclair‘s “Why I Dislike ‘Person First’ Language.”

There’s lots more out there with just a quick Google search! Please listen to what actual Autistics are saying.


3) Why do you capitalize “autism” and “autistic”?

Again, I am an Autistic person and that is part of my identity. Many Autistic self-advocates choose to capitalize “Autism” and “Autistic” and note that it’s similar to the Blind and Deaf communities who generally prefer capitalized identifiers.

Used Aspegers vs Autism FAQ