themighty logo

When My Autism Was Misdiagnosed as Social Anxiety

I looked around my small one-bedroom apartment — it was a complete disaster. The sink was piled high with dirty dishes and the trashcans were so full they were spilling out onto the floor. It was several weeks’ worth of mess, and I was sure the gnats buzzing around the kitchen appreciated it. It was totally embarrassing, but no one had come over in several weeks, so I just let the mess accumulate.

I was too exhausted after work every day to do much of anything in terms of the upkeep of my apartment, but my sister was coming over that evening, so I had motivation to clean things up. Within an hour of making plans with her the trashcans were emptied, the dishes were placed in the dishwasher, my sister had arrived, and I had successfully hidden the effects of my then-undiagnosed autism from the outside world once again.

It wasn’t always as simple as picking up a few things around the house, but I continued to manage the smoke-and-mirrors game I was playing well enough. I remember one of my greatest successes — I applied for a job that required a lot of social interaction, and I got it! Not only that, as I began the job I seemed to be getting along with everyone, and we were doing a lot of great work in the community. I always had a passion for nonprofits, and this new job was right up that alley. My coworkers commented on how sweet and easy to get along with I was. At that point autism was the furthest thing from my mind. I had been diagnosed with social anxiety years earlier, and in my mind this was the proof that I had finally overcome it. I was so proud of myself.

But not too long after I began the job, things started to unravel. I was really enjoying my tasks at work, as well as my new coworkers, but other areas of my life began to suffer. When I got home from work I found myself lying in bed for several hours at a time with my cell phone ringer turned off, basking in the complete silence, save for the hallway door of my apartment floor opening and closing once in a while.

I hadn’t had the energy to decorate my bedroom since I moved into my apartment a few months earlier, but now I purposely left the walls blank and the tops of the dressers bare. The lack of visual stimulation was necessary to me. I never had the energy to cook, hardly ever cleaned and my social life, although never busy before, was even more nonexistent. Dating was completely out of the question. My energy levels were already completely drained by the time the workday ended; it was just too overwhelming to think about doing anything more.

Soon I began to get sinus headaches that were almost unbearable. I had gotten migraine headaches for years, but these were on a whole new level of pain. I found myself calling in sick to work every few weeks or so, unable to get out of bed due to the pain and nausea. I would throw up 6-10 times before I was able to get myself to the doctor, and trips to various specialists concluded that I was stressed out. I didn’t understand what was going on; everything in my life was finally going great. After years of being misunderstood and feeling like I wasn’t able to express my true self to others, I finally felt like I was at this new job. So why was I so sick, stressed and exhausted?

There was one possibility that I came back to at that point, one I had considered in my early 20s but abandoned after a well-meaning psychologist said I couldn’t possibly have Asperger’s syndrome because I was making eye contact with him during our first therapy session. But I had researched enough about Asperger’s and autism over the years to know that I should take a second look, and take a serious look. I was sick and starting to worry about losing my two jobs — there was a lot more at stake this time around. So I went to see a psychologist who specialized in women on the autism spectrum. We were supposed to have four sessions together, and after the second one she said we didn’t need to continue; she was confident I had Asperger’s syndrome.

In that moment my life made sense to me, finally. From age 7, teachers expressed their concern that I didn’t talk during class. They also said they didn’t think I had the ability to make friends and didn’t think I had enough friends. In fourth grade I was sent to the school psychologist; my teacher didn’t really give a clear reason why, just that he knew something was off about me. The psychologist couldn’t determine anything either. Knowing people think something is “off” with you would do a number on anyone’s self-esteem, and it definitely did mine. But now, at age 28, I knew there wasn’t anything wrong with me. I was just on the autism spectrum.

My “healing crisis,” as I like to call it now, is more commonly referred to as autistic burnout — something that happens when an autistic person tries to live a lifestyle that’s not suited to what they can handle. I remember when I was visiting all the specialists when I was getting my headaches, and one told me I had so many headaches because my body was almost always in fight or flight mode and cortisol was being released, causing extreme inflammation. After my diagnosis, a quick Google search let me know other autistic people had experienced those same physical symptoms.

Which brings me to why I’m sharing this story. I’m thrilled there is more awareness of autistic females and how autism presents differently in females, but there is still a danger in being misdiagnosed. Many autistic women and girls go through a laundry list of diagnoses before hitting on autism, because the traditional profile of autism is based around how males present. For me it was social anxiety, and working on my social skills all through my 20s didn’t make me any less autistic. Even though I was able to be more social, I still had to put in conscious effort, which drained me physically and caused my overall quality of life to suffer.

Since my Asperger’s syndrome (now level 1 autism according to the DSM) diagnosis six years ago, I’ve been building a life that’s suited to myself as an autistic person. I have a lot of goals and things I want to do in life, but I know I have to go at a slower pace, and I give myself room to do so. It takes a bit more planning, but it’s worth it to have the quality of life I deserve.

If I had lived the past six years still thinking I just had social anxiety, I’m positive I wouldn’t have done any of the new things I did during that time. Co-leading a local songwriting group, learning kickboxing, coaching at my gym and moving from my home state to a different part of the country are a few of the things I was able to do, because I gave myself enough downtime since I knew I needed it as a person on the autism spectrum.

I hope the story of my diagnosis helps illustrate the importance of people, especially girls and women, receiving the correct diagnosis of autism. And I hope it gives someone reading this the belief that they can thrive, not just survive, armed with the knowledge that they are actually autistic.

Getty image by Bruniewska.