Welcome to the Spectrum!

My journey of self-discovery via a late autism diagnosis

Photo by Belinda Fewings on Unsplash

In the Beginning

I have spent my entire life feeling different from everyone around me. I never understood why, and I’m not sure I can find the proper words to explain how I knew, but my experience of the world was not like that of my peers. I was always known as “the quiet kid” and “the shy kid,” but I think what people really meant by those labels was “she doesn’t have many friends, and she doesn’t talk much.”

Well, what is wrong with that?

I was most content when I was by myself. I spent much of my free time in my head, using my imagination to entertain myself. I became an avid reader of any book I could get my hands on (I still have a passionate love of books today.) That’s not to say I didn’t have friends or enjoy interacting with my peers. But I was never one to be a part of a large friend group. I had my best friend and one or two other people I would occasionally hang out with outside of school hours.

Apparently, this is not what society deems acceptable. I always felt weird for not wanting to be more social — like something was wrong with me because I didn’t crave the social norms everyone else deemed so necessary. Of course, it didn’t help that I was diagnosed with scoliosis at age 12 and subsequently spent the next four years wearing a plastic torso brace 23 hours a day.

Way to make that transition from middle to high school super easy, Universe!

As I got older, it became even more apparent that I didn’t fit in anywhere because, by the time I was halfway through high school, I no longer had any friends outside of school hours. I never went to parties (not that I was ever actually invited to any), and any friends I used to hang out with suddenly decided they would rather spend their time elsewhere, with other people. I did attend the occasional school dance, but you could generally find me hanging out in the corner, feeling awkward and out of place.

By the time high school ended, I was feeling utterly lost. All my peers were going off to college or university, getting jobs, and having relationships — I wasn’t interested in any of those things. But of course, that’s not acceptable. You must grow up, be an adult, and stop being interested in anything society deems childish. I felt like an alien who had been accidentally stranded on Earth. Everything I knew about humans baffled me completely. In short, I did not feel remotely “normal.”

Being an Introvert is okay!

Eventually, I ended up going to college after all. Around this period, I finally discovered what it meant to be an introvert. Things finally started to make sense. I wasn’t abnormal, just introverted. Social interaction drains my mental energy, and I need alone time to recharge my brain.

My college advisor was the first person to explain what it meant to be an introvert. More importantly, she told me it was okay to be that way! For the first time in my life, some of my odd behavior started making sense to me. She told me about finding a balance between social activity and alone time. Yet, even with this new-found knowledge and acceptance of myself, something still felt off. I still had a hard time making new friends. I never had much desire to hang out with people when we were not on school property. I just wanted to be by myself as much as humanly possible.

Why is that so wrong?

Entering the Workforce

Unfortunately, my first attempt at college did not end the way I anticipated. It turns out the program I had chosen to pursue did not remotely suit my introverted personality. I ended up leaving the program halfway through. Feeling like a complete failure, I felt utterly lost for the second time in my life. Why couldn’t I get this human thing correct? Everyone else didn’t seem to have a problem navigating the world in the “proper” way, so why did I struggle so much all the time?

At this point, I decided to get a job, hoping this would make me feel like a productive member of society. I was terrified to go to the job fair and even more terrified when I got an interview. I got hired, though, which made a monumental difference in my life.

As an introvert, you would think working in a grocery store where I’m constantly required to interact with strangers is the worst possible environment for me. However, it quickly brought me out of my shell, especially when I was offered the position of department trainer after only six months of working there. Taking on a leadership/teaching role allowed me to become more comfortable using my voice and more confident in my abilities.

When I was at work, I felt like a normal human being for the first time. It didn’t solve my other issues, though. My social life was virtually non-existent. I was okay with this, but I felt like a freak because everyone else seemed to crave those connections with others. They always wanted to go out and do things, while I wanted the opposite. Hermit life seemed incredibly appealing to me. I secretly think it gets a bad rap.

I also discovered there is such a thing as a customer service voice. It’s the oddest phenomenon, but I can hear it happening — I’ll be talking in my normal voice to my coworkers, but the second a customer approaches, that customer service voice kicks in. My voice gets higher and brighter, and my word choices change. These changes are all completely involuntary. Maybe it’s something that naturally happens when dealing with the public daily, but it was like I suddenly had two very distinct personalities. They could switch automatically on a dime, depending on who I was talking to.

After working at the same job for many years, I grew a lot as a person. However, I still felt different from everyone around me. I regularly found myself utterly confused by the human race.

Are we sure I am definitely a human being and not some alien secretly wearing a human suit?

Anxiety Diagnosis

In March of 2020, this new disease called Covid-19 started popping up. Before I knew it, a global pandemic had been declared, and the world had started closing its doors en masse. Unless, like me, you were one of the lucky ones deemed Essential Workers. You were not only allowed but expected to carry on your life as usual — taking public transit, going to work every day, etc — despite mounting stress and fear of getting sick or, worse, making my vulnerable family members ill.

During the pandemic, things started coming to a head in my life.

After only a few months of pandemic life, I found myself increasingly stressed out and anxious. My coping skills dropped drastically. My ability to put on that customer service persona diminished relatively quickly. I have never felt that consistently stressed out in my life. It got to the point where I had to take a leave of absence from work because I simply couldn’t handle it anymore. My relationship with my best friend was suffering. I was not behaving in a work-appropriate manner and generally felt like my entire life was falling apart.

It eventually got to the point where I was so burnt out that I stopped functioning correctly. I essentially turned into a walking zombie. I could perform essential daily functions (brush teeth, shower, go to work), but I didn’t have the mental energy to do much else. At that point, I very much wanted to stop existing altogether just so my brain could have a break.

That is when I realized that I needed help. I finally decided to go to my doctor to get a handle on things. I explained that my anxiety had completely taken over everything in my life. When she asked me how long I had been experiencing anxiety symptoms, I laughed and told her, “My whole life.” She officially diagnosed me with General Anxiety Disorder at that point. I started taking medication to level out my anxiety brain, and for the first time in ages, I could finally think rationally.

Aha! Anxiety must be the answer — the piece I was missing that always made me feel so out of place!

That’s what I thought, anyway. But although some things seemed to improve, I still felt like there was something fundamentally wrong with me. Something was still missing. None of my major issues with my relationships or society were improving.

Life got a little bit better once I accepted that I had anxiety, but I was still that alien being living amongst the humans.

The Lightbulb Moment

A little over a year ago, I was scrolling through Facebook. I came upon a post that listed “Common Autistic Traits in Women,” and it made me do a double take. As I started reading, it felt like someone was describing a checklist of my own character traits. I suddenly thought, “Wait, is this me? Is this the piece I’ve been missing in understanding why I’m so different from everyone else?”

Of course, this sent me down the rabbit hole of research. I eventually ended up on a website called Embrace Autism. I promptly discovered the site contained every psychometric test you could ever want to use to self-diagnose autism — of course, I immediately took every single one of them. To my surprise, virtually all of my scores were on the higher side, indicating a strong possibility of autism.

Now, my only previous understanding of autism was through media stereotypes (think Rain Man), so I was initially skeptical that I could be on the spectrum. At this point, I knew I was definitely neuro-divergent, but autistic? I kept researching and started watching YouTube videos created by autistic people. Among the many videos I watched, I discovered Mom on the Spectrum and Orion Kelly (That Autistic Guy), who have since become my go-to channels for learning about what it’s like to live as an autistic adult.

The more videos I watched, the more I felt like they could be describing my own life. Their experiences resonated with me so deeply that I started slowly wondering if I really could be autistic.

This is where my journey truly started …

Photo by Clemens van Lay on Unsplash

AuDHD Diagnosis Journey

When I was pretty confident that I was on the spectrum, I reached out to my family doctor about the possibility of getting a formal diagnosis. I asked her if I was crazy or if it could be true and if I should consider getting formally assessed. Her answer was basically, “Do what you want.” What a super helpful response! (insert eye roll). She did give me some names of people who do assessments locally.

Well, it turns out that only one of the three is located in my city. I sat with it for a bit but finally decided to contact them. I sent an email (because phones are evil!), and to my great disappointment, they told me there was a waiting list for adult autism assessments over a year long already. They weren’t even taking any new names to put on the waiting list.

I suddenly began to realize why self-diagnosis is so widely accepted in the autistic community. It is not easy or affordable to get an official diagnosis as an adult. All the existing resources are geared towards supporting autistic children. But guess what? Autism doesn’t just stop when you are deemed a legal adult in the eyes of the law. Autistic children grow up to become autistic adults, and they will continue to struggle with all of the same challenges.

I’m not usually one to promote self-diagnosing things based on information obtained from the internet, but in this case, I am totally supportive of self-diagnosed autism. Someone once told me, “People who are not autistic generally don’t go around wondering if they are autistic and spend hours researching information about the topic. If you think you are autistic, you are probably correct.”

However, I knew that for my own peace of mind, self-diagnosis was not enough. I would never be able to fully believe I was autistic if I didn’t obtain outside validation from a professional.

But what were my options?

I remembered reading on the Embrace Autism site that they also offer official diagnostic services, so I started reading more details. I was surprised to learn that they are actually based only two hours away from me. The process was not cheap, but it was 100% worth the cost to get answers and alleviate any of my lingering doubts. So, I decided to take the plunge.

The nice thing about going through Embrace Autism is that they split the process into three separate parts (and thus three separate payments). Splitting it up lets you do the initial assessment first, which is the cheaper portion. If you show no indications of autism, you don’t have to go any further. If you do show indications of autism, you still don’t have to go any further, but if you choose to continue, you pay for the formal diagnostic process at that point. There is also the optional third step, paying to have a medical doctor sign off on the diagnosis (because diagnostic rules differ depending on your country).

Embrace Autism Diagnostic Process

So, how does this diagnostic process actually work? I can only speak from my own experience, but I know there are curious people out there, so I’ll walk you through the basic rundown.

Initial Assessment

Part one is the initial assessment, which consists of a list of basic questions about your life and past experiences, including how you interact with others, how you experience emotions (both now and as a child), whether you understand unspoken cues (body language, sarcasm, tone of voice), your experience with sensory issues, routines, etc. You write all the answers in a Word document. Then, you have to complete seven psychometric tests and submit everything online.

This process was mentally exhausting for me because it required me to dive deep into all of my past thoughts, emotions, and behaviors. At 42 years old, it is difficult to remember how I felt or reacted to certain things as a child. However, I learned a ton about myself as I unlocked long-buried memories, and overall, it was quite an insightful journey of self-reflection.

After Dr. E has reviewed everything you submitted, you will get an official screening report via email telling you whether you are likely autistic or not and inviting you to continue with the rest of the diagnostic process if you wish.

If you choose to continue, you will pay for the second portion at that point. Then, you will receive another round of questions and psychometric tests to complete. The second round concerns your friendships, relationships, emotions, daily life, family history, and general health. There are 12 tests to complete this time, as you will also be assessed for co-occurring conditions such as ADHD, Alexithymia, OCD, and CPTSD.

After these have been submitted and reviewed, you will attend a virtual meeting with Dr. E. This lasts roughly 45 minutes, and she will ask you further questions to confirm the results from all your previous submissions. I was so incredibly nervous because I hate video calls, but I have to say that the meeting was very relaxed. Natalie made the whole thing feel like a normal conversation rather than a formal clinical process. It was lovely talking to her and finally being able to voice all the thoughts and questions I’ve had over the past year.

Once the interview is completed, Dr. E. will compile a written report, which you will receive a few weeks later. (I am still waiting on that part)

The entire process lasted just over a year for me. It probably could have gone faster, but I chose to really take my time with the written questions for both parts. I wanted to be as thorough as possible and give the assessor as much information as possible to work with.

Now what?

At the end of my diagnostic interview, after she told me I was being diagnosed with level 1–2 autism as well as ADHD, Natalie asked if I had any questions. I told her, “My biggest question is, now what? What do I do with this information?”

Okay, so I’m autistic. (it still feels weird saying those words)

Fundamentally, nothing has changed. I am still the same person I always was. I’ve always been autistic — I just never knew it before. But at the same time, it feels like everything has changed. So many things about my life are starting to make sense. I feel like a newborn who is just starting on life’s journey.

One thing I was not expecting to experience was the grieving process that comes along with this diagnosis. It’s like the old me died, and a new me has been born. I’m basically starting all over from scratch in a lot of ways.

Now comes the real question — what do I do with this new information?

How do I use this newfound knowledge to improve my daily life and make everything less stressful?

I’m slowly beginning to figure this out, at least in terms of my sensory issues. I’ve discovered that noise-canceling/dampening headphones and earplugs (Loops are an ingenious invention!) help tremendously in overwhelmingly noisy environments. I can still hear what’s going on around me, but they take the edge off the background noises and lower my anxiety/stress level significantly.

I have also discovered fidget toys. Fidget spinners are fabulous! I never understood their appeal before, but I totally get it now. My fidget spinner instantly calms me down when I feel extra anxious. I don’t really understand the why of it all yet, but I’ll take anything that helps at this point.

Ever since I started on this diagnostic journey, my sensory issues seem to have increased tenfold. Either that or my tolerance level has decreased significantly. Maybe it’s both of those things. All I know is that I have been seriously struggling with my super-sensitive hearing lately, and it has been mentally exhausting.

As for the rest, I know I have a long journey ahead of me to discover new ways to improve my day-to-day life. But I’m looking forward to continuing the adventure.

I’m finally free just to be me …. whoever she turns out to be.

As a recently late-diagnosed autistic woman, I feel like there is so much I still need to learn. I would love to hear about other people’s journeys. Are there any online resources that helped you educate yourself and your family/friends about the autistic experience along the way? What have you learned that surprised you? What has been the biggest misconception about autism in your experience?

Please share your thoughts in the comments section. I would love to make more connections with people!