My Journey with COVID-19

STORIES from the SPECTRUM

Autism from an Autistic perspective

In the middle of February 2020, a novel Coronavirus was starting to spread worldwide, which people would know as COVID-19. This new virus turned into a worldwide global pandemic the world had not seen since the 1918 influenza pandemic, also known as the Spanish flu.

This “Stories from the Spectrum” will be slightly different from previous articles in this series as it is in a question and answer format. Today we are talking with Karen Krejcha, Executive Director and Co-Founder of Autism Empowerment, Editor of Spectrum Life Magazine, and Autism Empowerment podcast host. She will be talking about her battle with COVID-19.

Karen, thanks for being willing to talk about this. I know this has been a long and rough road.

You’re welcome. This is a sensitive topic for my family and me. However, I hope that someone out there may benefit from hearing my autistic perspective.

What were your first symptoms of COVID-19, and when did you first have those symptoms?

The first symptoms I noticed were exhaustion, overall achiness, and a headache that wouldn’t go away. That was in early March 2020. Before catching COVID-19, I rarely slept more than 4-5 hours straight per night and had difficulty falling asleep. By the name April rolled around, I was having chills, fever, and sleeping 12-14 hours straight.

Do you have any idea where you may have caught it from?

That’s the million-dollar question! I don’t think I’ll ever know for sure. When I first noticed I wasn’t feeling well, I was working at home finalizing the Spring 2020 issue of Spectrum Life Magazine. The only place I went out to was an information night at my son’s high school for families of incoming 9th graders. That was February 24th, 2020.

When did you know it was serious enough to contact your medical provider?

It was that debilitating headache. It was different than any headache I’ve ever had. It wasn’t a sensory overload headache or migraine. It started in the front and was in the middle of my head, pulsating stronger then softer. When it was strong, it was powerful and radiated to the back of my head. Tylenol did nothing. Coated ibuprofen did nothing. The migraine prevention medication I had did nothing. It was extreme on March 19th, so strong that we spent a few hours navigating the healthcare phone system reaching advice nurses and finally a doctor. By then, I was showing many symptoms of COVID-19 (e.g., headache, cough, fever, bad chills, reduced sense of smell and exhaustion), and I asked if I could get tested. They said they would like to but unfortunately, I couldn’t.

Why couldn’t you get tested?

There simply were very few tests available in March and April in Washington and Oregon. At that time, Oregon was only receiving 40 - 80 tests per day and where I live in Vancouver, Washington, there were few tests also. My healthcare provider network serves Oregon and Southwest Washington and I was told I could not get tested unless I was hospitalized overnight or a healthcare worker with a vulnerable population.

So then what happened?

I got much worse and was in the hospital emergency room for the first time at the end of March. I had trouble breathing, my oxygen was low, my hacking cough was similar to the cough I had when I had pneumonia a few years prior, and I was running a consistent fever. My headache was non-stop agony.

They tested me for influenza (which if it were positive would eliminate the possibility of COVID-19) but as suspected, I was negative for the flu. While in the hospital, my oxygen levels dropped, I became dizzy, and had trouble breathing. They wanted to give me a COVID test but didn’t have any in the emergency room. They were also very low on Personal Protective Equipment (PPE).

When I was eventually released, I was given an inhaler, a headache cocktail that probably could have knocked out a horse but didn’t work on me, and was scheduled for a follow-up call with a doctor the next day. I was also given COVID-19 paperwork and told to assume that I had COVID-19. They asked me and my family members to quarantine for 14 days and stay in quarantine if I continued to have fever, cough, or shortness of breath.

How long were you in quarantine?

I was in quarantine for almost four months due to symptoms that didn’t improve. We kept a chart of my daily temperature reads, oxygen levels, and other symptoms. Although I took fever-reducing medication, I still had daily temperature readings over 100 degrees for the next few months. It was exhausting.

How do you think being autistic impacted you? Did the doctors know?

I was living on sensory overload much of the time when it came to sensitivity to light and noise. Interestingly enough, my sense of smell was drastically diminished. It wasn’t a commonly known symptom at the time. It was bizarre having a reduced sense of smell because I’m generally a “super sniffer” who smells everything.

On my best days, I am not a fan of talking on the phone even though I can do it. On my worst days, particularly when I feel sick, it’s almost impossible because I struggle to process what people say and then turn that into a coherent reply.

This is a commonly reported concern of autistic people. During that time, there were SO many phone calls and telehealth appointments to navigate. When calling in, I never got to the person I needed right away. And to make things more frustrating, I kept needing to repeat my story over and over again with multiple people. I advocated for my husband to speak on my behalf, and he tried his best, but in almost every case, they said they needed to talk with me. Those doctors got to sit through a lot of agitated coughing fits and uses of my inhaler.

My husband also wasn’t allowed to go into appointments with me. Although I have strong self-advocacy skills when I’m feeling well, that is not the case when I’m sick. I would disclose being autistic whenever I felt it would be of benefit; however, I wasn’t taken very seriously in several cases because I didn’t appear or sound “autistic enough.” It was extremely frustrating and triggered anxiety and depression.

How did you balance COVID-19 with your family and your work with Autism Empowerment?

We have two children at home, one who was in 8th grade at the time and another in college. Both are on the spectrum. While I was sick, my husband John really stepped up to help with distance learning and wherever else needed.

Thanks to my autistic neurology, on good days, I could hyperfocus on important work projects while mentally blocking out distracting symptoms. Unfortunately, I couldn’t do this as often as I would like. I knew my body well enough to realize that when I worked for an extended period of time, I would crash afterward because my daily tokens were almost depleted.

I felt a lot of guilt, shame and embarrassment during those months. I thought I was letting my family, friends and everyone at Autism Empowerment down. At one point on April 2nd, I posted a Facebook live video at Autism Empowerment to describe what I had been experiencing. Shortly before that, I believed it was possible that I might die. I wanted to let people who I cared for know that I loved them and share some words of encouragement to those I knew at Autism Empowerment and in the greater autism, autistic and disability communities. Despite my best intentions, I think it was too raw and after a few thousand views, I took it down because I wanted to protect my family.

Due to the pandemic and state shutdown requirements, Autism Empowerment had to close all in-person gatherings for our support groups, social clubs, and Autism Kids Care Club volunteerism program. That happened in March 2020, and we still aren’t able to meet in person yet.

Although most people have been kind and understanding, some people did struggle with it more than others. Despite knowing I had COVID-19, some just didn’t care and even bad-mouthed us for not finding a way to continue our programs.

How did you handle that?

At first, I wasn’t aware, but as I began to hear things through the grapevine, I tried to address the situation respectfully. We wanted to approach people from a place of grace and understand that they were struggling too. If they were mad at our programs closing, it was less about us personally and more about the situation, the disruption of routine, and a feeling of disappointment and helplessness. I don’t fault people for that.

This pandemic has been hard on so many people. Although I’ve seen a lot of resilience that has given me hope, there has been a lot of sadness, pain and struggling too.

It’s now January 2021. How are you feeling physically and mentally?

I am what is called a COVID long-hauler. Although I’d like to say and think I’m back at 90%, the reality is I have long-term effects and additional health problems that have developed since first becoming sick. The most difficult to manage are brain fog, aches and joint pains I didn’t have before, headaches and fatigue. I also have anxiety about catching COVID again. (This has happened to a friend and others I know.)

I have found support with a group on Facebook called Survivor Corps. They are a nonprofit grassroots movement educating and mobilizing COVID-19 survivors and connecting them with the medical, scientific, and academic research community to help stem the tide of this pandemic and assist in the national recovery.

Thank you for sharing your story. I wish we had space to talk more.

You’re welcome. I do have a lot more to share, so we will be doing a special Autism Empowerment podcast episode in January 2021 to supplement this article. To find it, be sure you’re subscribed to the podcast and visit www.autismempowermentpodcast.org for Show Notes and a transcript. (Editor Note: Podcast episode is now up at http://bit.ly/AEPEp3)

Karen Krejcha is the co-founder of Autism Empowerment, where she serves as Executive Director. She is the Editor of Spectrum Life Magazine and host of the Autism Empowerment podcast. Karen was diagnosed on the autism spectrum in her 40s, after the diagnosis of her two children. She has been married to John for over 28 years and is devoted to promoting a culture of acceptance and empowerment within autism communities and worldwide.

Karen Krejcha