26: Sick While Autistic

Ah, cold and flu season. Never fun for anyone, but doubly less so for many Autistic people. I’m currently experiencing a particularly nasty virus and it’s been an interesting time reflecting on sickness while in bed with a virus for the first time since my diagnosis as Autistic. I’ve noticed a lot and it’s helped me unpack a lot of shame (and a little trauma) from a childhood of fairly frequent illnesses.

[Content warning: brief mention of trauma (in last bullet point), mental health complications of being sick (second bullet point).]

So let’s unpack some of it together, shall we?

    • First let’s consider that many Autistic people have chronic illnesses and conditions like fibromyalgia, chronic fatigue/M.E., Ehlers-Danlos Syndrome, etc. We may seldom feel well on an average day, but may have learned to more-or-less cope with being chronically ill. Add in extra unpleasantness that only exacerbates our symptoms and we are champions for getting through any additional illness.
    • Consider also that many of us also have chronic mental health obstacles like anxiety, depression, PTSD, and more. The point made above applies equally to mental illness. We have a lot to deal with on a healthier day and added illness makes that fight more difficult.
    • Give some thought too to the terrible sensory components of being ill: inflammation, pain, fever/chills, aches, pressure, various disgusting fluids, the feel of a stuffy nose, sweating, headaches, being more overwhelmed by sounds, changes in sense of smell or taste, etc. For someone with Sensory Processing Disorder, that can be a lot. It can be so incredibly overwhelming and can induce panic and anxiety attacks.
    • When sick, routines get chucked out the window. Many Autistic people thrive on the familiarity, predictability, and comfort of routine. One of our biggest comforts that allows us to mask and tolerate a good deal is suddenly and completely thrown out the window!!
    • Brain fog from feeling unwell makes it incredibly hard to mask and communicate. Masking and communicating as an Autistic person can be a near-constant game of mental gymnastics and being sick makes it even more difficult to play that game.
    • Everything listed above puts us several leaps closer to meltdowns and shutdowns. People who might ordinarily have a few a year might find themselves much more likely to have them. (Also see my piece on 2: Meltdowns & Pillars to understand why this is.)
    • We may experience extreme changes in our ability to do things we normally can. We may struggle to speak, regulate or identify emotions, eat unfamiliar foods, avoid meltdowns, communicate efficiently, etc. And those abilities may change rapidly and often while sick.
    • Lastly, consider the fact that many Autistics may have some level of trauma associated with being ill for a vast variety of reasons. I myself had several horrible bouts of illness as a child that were frightening for me. I also have gone through more medical testing than many people twice my age and things associated with being ill can make me incredibly scared and childlike.
    Phew, that’s a lot going on, right??

    So what can we as a sick Autistic or a caregiver of a sick Autistic person do?

    1) Validate and praise

    Really look at the list above of reasons why being sick as an Autistic might be extremely challenging:

    -If you are being hard on yourself, please try to be patient with yourself and validate your feelings. It’s really hard to be sick. You’re doing well, and you’re going to get through this! Make a list of things you’re doing well: taking meds, sleeping a lot, drinking fluids, keeping calm, etc.

    -If you are caring for an Autistic, please have patience. We might seem “dramatic” or “childish” from your perspective, but I challenge you to exercise empathy (lol here) and patience as you imagine what we may be going through. Validate the Autistic’s experience by saying things like “This is a really hard thing that you’re going through, but you’re doing such a great job. I’m proud of you for hanging in there.” Praise the efforts of the Autistic, even if they seem like small things to you. Do NOT make comments belittling the experience. If you need to, step away for a while (when safe) and practice some self care until you are calmer.

    2) Consider temperature, texture, and taste

    When ill, the very best things for me personally to combat the unpleasantness of sensory discomfort are the three T’s:

    Temperature: Using a cool washcloth or a heating pad can give me some feeling of control over my body and my pain. Drinking a hot or cold liquid can also help to ground me and take some panic away. Taking a shower or bath can help majorly too.

    Texture: Soothing stuffed animals, squishing silly putty, wearing fuzzy PJs, etc. are all small things that can make a big difference in keeping calm.

    Taste: Using hard-candies like peppermint can help remind the body to stay present! (Be sure that you will not fall asleep and choke!) Sweet drinks or teas help me a lot too as do flavored things like Jello or similar.

    3) Make a surrogate routine

    Keep whatever you can in a routine–mealtimes, bedtime routines, etc. But of course many things will not be able to happen as usual. Try to make a temporary schedule with similar activities. For example, schedule times to read together when English class would normally happen.

    If that fails, make a temporary schedule anyway! Examples of things to include could be: take temperature, take medicine, drink fluids, watch TV show, sleep, rest time, Skype friend/family, shower or bathe, sensory time, etc. Knowing what’s coming up with some degree of certainty can help so much and it’s great to have a reminder of when you need to take medicine and when you last drank fluids.

    4) Chart a sick calendar

    For whatever reason, I know logically that I will get well, but on some level, I don’t. Being sick is such an all-consuming, exhausting, and sometimes scary thing for me. I need reassurance that I will get well soon.

    One thing I suggest is printing a week calendar and asking a loved one or doctor to help write out things like when the illness started, benchmarks for when the Autistic will probably be able to do certain things again, and a goal when they will probably feel much better. Feel free to make the benchmarks a period of a few days if you worry about making false promises.

    Knowing how long you have to endure something is the biggest step toward tolerating it.

    5) Make being sick less awful

    Pamper yourself or the Autistic. Watch some TV or a movie. Eat something yummy you normally save for special occasions. Play some video games.

    Now is a time for rest and relaxation. Put off whatever you can until another day. Those emails will still be there when you’re well. So will school projects and deadlines. If something is overwhelming, put it aside and do something to “indulge” in being sick: take naps, play games, etc.

    Take care of you because you are so so important.

    [Featured image description: A green plant with thin, long leaves with white and pink spots that look like chicken pox. Text reads “Being Sick as An Autistic Person”]

Yenn’s Autism Show: Sara Earhart

I recently had the awesome opportunity to be interviewed by Yenn Purkis–Autistic author, blogger, presenter, and advocate. Their podcast is called The Yenn Purkis Autism Show (Formerly known as Jeanette’s Autism Show at the time of recording.)

In this episode, we chatted about blogging, the Autistic community, identity, and more!

Click the link or picture below to be redirected to the podcast! Both open in a new tab. (WordPress isn’t allowing me to embed the podcast here for whatever reason.)

The interview: https://jeanettepurkis.podbean.com/e/jeanettes-autism-show-sara-earhart/

A screenshot image of the podcast player showing Sara's interview. The title reads

Yenn’s links:

Podcast channel: https://jeanettepurkis.podbean.com
Facebook: https://www.facebook.com/jeanettepurkisbooks/
Blog: https://yennpurkis.home.blog/
Website: www.jeanettepurkis.com
Twitter: @yennpurkis

We hope you’ll enjoy!

[Featured image description: On the lefthand side is a picture of Sara in front of Niagara Falls. Sara has sunglasses on top of her blue hair, noise-cancelling headphones around her neck, and a plushie duck in her hands. On the right is a blue box with the words “Podcast Interview. Talking about Autistic identity and community, blogging, gender, and more! The Yenn Purkis Autism Show: Sara Earhart” A small drawing of Yenn is pictured in black and white. They have their eyes closed and are smiling widely while holding a framed picture of their apartment.]

Video: Meltdowns & Shutdowns

Did you know that I have a Seeking Sara YouTube channel?

I make videos rather infrequently but am happy only making a few a year since writing is the medium that works best for me! Please enjoy.

What do I experience in a meltdown? What is a shutdown? What are pillars and how does paying attention to them help lessen my meltdowns/shutdowns?

 

Also, in case you missed it, I was recently published on both Thinking Person’s Guide to Autism (here) and The Mighty! (here)

 

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.”

 

[image description: An image of a delicate bright pink rose that’s covered in raindrops.]

13: Autistic Women and Girls

Girls and women on the spectrum have been left behind.

UPDATE: Many non-binary, genderqueer people, and men have also been left behind too! This post was written toward the beginning of my researching and self-discovery and will be updated.

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”

 

[image description: a close-up of a purple ragwort flower on an overcast day. The flower is covered in delicate raindrops.]

6: Why I’m Writing This Blog

If you’ve read my post entitled Seeking Sara, you’ll have a pretty good idea of why I started this blog.

I have three main goals:

  1. To look back at my childhood and the years before diagnosis, see where I started to mask my Autistic traits and to mimic “normal” behavior, and find who I am authentically.
  2. To give people on the outside a look into an Autistic brain and life.
  3. To reach out to others like me who have gone (or still are) undiagnosed or misdiagnosed.

There’s another goal though. I’ve grown so much since I started to realize I might be on the Spectrum, and even more so since my official diagnosis. But it’s been pretty lonely. I’d love to connect with some fellow Autistics.

But I’d also like to more fully connect with my friends and family. Carrying around this secret has been really exhausting and isolating. I don’t feel like I have very many people that I can talk to about it all and that’s been frustrating and scary. I don’t feel ashamed or embarrassed about being Autistic and I don’t like feeling like I’m lying.

I also hope that sharing this blog with friends will help them understand my behaviors more. They’ll know why I sometimes wear ear plugs or make multiple trips to the bathroom at a restaurant (See: sensory overload). They’ll see how much energy goes into everything that I do. They’ll understand why I have to cancel plans sometimes even when I really, really want to see them.

I would love to talk about Autism openly!

If you are a family member, friend, or acquaintance, know that I don’t want you to tiptoe around me or my Autism. I don’t want you to feel uncomfortable or to treat me like I’m fragile. And I don’t want pity. I love to talk about Autism and being Autistic (it’s who I am and I love me!) and welcome dialogue when I have the energy. I only ask that you see my post on “What Not to Say” to an Autistic. It’s ok if you make mistakes (if you’re willing to learn), so don’t stress too much. Don’t feel like you need to walk on eggshells!

I won’t lie. I keep going back and forth about whether or not I should share this blog with anyone. It terrifies me sometimes. But it also excites me! And the thought of continuing to live with this secret and my masks is much more horrifying to me than being open and honest about who I am.

 

 

[image description: Bright green, rain-soaked lily pads on a dark pond. Ripples break the pond’s surface, creating patterns.]

4: Spinning & Rocking

Spinning

While I was teaching in Japan, I often went to visit one of my favorite students in his private one-on-one classroom. He was in the first grade, Autistic, and the sweetest and funniest kid in the entire school. I’d often stop by to play and we really meshed well together. I understood his style of play and genuinely enjoyed myself. He knew I was a safe teacher who would always respect his boundaries and needs. We were buddies. But there was one thing that we didn’t have in common. He really loved to stand in the middle of the classroom and spin. One day while I grew nauseous watching him spin, a thought struck me.

“I never spun.” I shrugged and put it from my mind, remembering that all Autistic people are different–just as varied and unique as neurotypical people are.

It wasn’t until an hour or so later that it hit me. Wait… yes, I did. I spun obsessively. But not in a way that would seem out-of-place for your average American child in the 90s.

For a period of years, I would rollerblade for hours and hours every day on my own. And my absolute favorite thing to do while rollerblading? Spin. I would spend literally hours doing spins, skating in circles in the driveway, and spinning around support beams in our cement-floored basement.

Why did I do it? I remember it being extremely comforting. It was a time when my thoughts flowed naturally or not at all. I had mental clarity during that time, but was also able to just stop thinking when I wanted to. 

The feeling of spinning or skating in circles made my mind and body relax. There’s something very natural about a circle. Something beautiful. There’s no real beginning or end. It’s solid, predictable, and reliable.

Why did I like spinning so much? Perhaps it has to do with the sure, mindless, and unchanging certainty of a circle. Maybe it was something to do with the pressure on the body I could feel as I spun.

Maybe both. Or neither.


Rocking

Why do I rock when sitting and sway or rock on the balls of my feet while standing?

It feels so right. My anxiety drops away, I take deeper breaths, and my scattered thoughts slow. Rocking or swaying fill me with such a peace, calm, and genuine sense of wellbeing. Somewhere deep inside my chest something stills, unwinds, and then fills with a deep sense of assured peace.

Maybe it’s hard to understand, but it feels like getting home after a long day, being enfolded in a loved one’s arms, and sinking into a perfectly-temperatured bath all at once. It’s safe and blissful.

I’ve noticed that my rocking can give me a lot of insight into my mental, emotional, and sensorial states. The above-mentioned side-to-side rocking tends to be a soothing motion that might mean that I’m calm or content, especially if it’s slow. On the other hand, rocking front-to-back almost always means that I am in distress, panicked, or overstressed. The faster the rock, the greater the inner turmoil. 

Sometimes my body begins to rock involuntarily. This usually only happens when I am very tired. It’s a rapid, abrupt movement forwards and backward as opposed to my usual, slow and gently side-to-side sway. This is a clear warning sign that shouts MELTDOWN IMMINENT! (Take cover!!)

I realized that I often have a natural urge to rock to comfort or regulate myself, but that I don’t allow the motion. It’s just another thing that I’ve involuntarily suppressed in an attempt to pass as “normal.”

I’ve gotten better in the last year at allowing myself the freedom to rock when I need to. I almost always allow myself when in private and I’ve even gotten better at rocking gently in public when it will help me cope with a situation. Undoing years of masking and mimicry will take time, but it’s an essential part of unapologetically seeking my authentic self.

 

[image description: A massive, pink, rose-like flower is central to the photo. Dark green leaves peek out at the bottom of the picture.]