My Diagnosis Journey and Why I Still Use the Term Asperger’s- Part 1

“I don’t want my challenges to stop me.” I said this to my therapist as I painted the inside of a box plum and vibrant green. Something you do in art therapy.

She replied, “What do you consider to be your challenges?”

Silence. Yet the churnings of thought temporarily wrinkled the upper parts of my face.

So, she pushed, “Depression? What else? I don’t want to make any assumptions.”

I like that my therapist doesn’t make any assumptions.

“Depression.” Pause. “OCD.” Big pause, deep breath as I always did before I said the word. As if the word was dirty or something. As if I was preparing for some type of backlash in the form of punishment and/or judgement.

“Asperger’s.” 

I had put two and two together, me and Asperger’s. Something I rarely did, let alone did with company. I had said out loud that Asperger’s was one of my challenges, which meant I had to have Asperger’s.

She wanted to know more. “When did you find out that you had Asperger’s?”

“When I was 19 years old.”

“Who told you?”

“A neuropsychologist.”

“Do you find that to be part of your truth?”

“It depends on the day.”

I know that sounds bad. As if I wake up in the morning, jump out of bed, and proclaim, “Today, I have Asperger’s!” Or maybe if it’s not that kind of day, I just wake up and step out of bed. It’s not like that at all. Let me explain.

I’ve always felt a little different. Like the way I saw the world wasn’t the same as everyone else or most other people. Up until I was in middle school, that was enough. Being different was okay. It just made me a little eccentric, a little quirky, a little unique. But when I was 12 years old, and amidst the typical middle school woes, the differences between me and my peers became more troubling. I loved listening to bands like the Beatles and the B52’s while my friends preferred listening to whatever was on 106.1, the local popular station. My friends loved watching and talking about Jersey Shore while I much rather watch Untold Stories of the E.R.

I liked and hated who I was all at the same time. I liked that I had an eclectic, good taste in music like my dad and that I didn’t care about petty television dramas. But I hated that I felt like I couldn’t relate to my peers or understand them. These feelings on top of everything else that was going on at the time led to my first bout of depression. I stopped eating regularly, started walking around with a hood on my head, and just felt down and out all the time. Teachers noticed, my grades slipped from straight A grades to a couple B grades and I got my first ever C in English that trimester. Yet I couldn’t express what I was feeling or most importantly why.

Then I was introduced to Asperger’s Syndrome. I don’t remember how or exactly when, but it changed my world. I identified with the special interests, social and sensory challenges. People with Asperger’s often explained themselves as being part of the wrong planet, and that’s how I felt. I felt like I didn’t belong; but evidently, I had to belong somewhere. And it seemed like that place was the Autism spectrum. And being on the Autism spectrum wasn’t bad, it was better than just being different. It was something that made me smart and passionate and special.

Immediately, I wanted to know more. Learning about Asperger’s became my special interest at the time as I looked up things about it online, took out books about it from the library, and watched television shows that portrayed characters with the condition. According to all my research and my own unprofessional opinion, I had Asperger’s. And I kept that revelation my little secret for a long time. But after a while, I really just wanted to tell someone. To finally come out about who I was. So, I attempted to tell my best friends. 

I remember telling them at lunch time that I had something important to tell them. I remember being coy about the topic, constantly saying “I can’t” and “not yet” every time they pestered me to tell them. I remember finally writing the words down on a piece of paper and folding it up. In those three words, relief and terror were all mixed up into one. I have Autism. I remember us being in Spanish class. Them sitting next to each other on the opposite side of the room, one of them taking out the note, them leaning over towards each other so they could both read it. I watched carefully for their reaction. I couldn’t really read their faces; so I sat in nervous anticipation, waiting to hear what they had to say, until the end of class.

At the end of class, they told me how they felt. They really told me how they felt. And in short, they were pissed. How dare I say that I had Autism? It wasn’t funny nor was it called for. They knew people who had Autism. Those people yelled and were aggressive because they couldn’t speak. Those people were severely handicapped and couldn’t do anything for themselves. They reminded me that our other friend’s brother had Autism. I’d been in the car with her and him as he recited random YouTube videos verbatim. How dare I say that I had Autism? I clearly did not. I could speak. I could hold a conversation. I had friends. I didn’t look like I had Autism. I didn’t act like I had Autism. How dare I say that I had Autism?

I don’t know what I was thinking. I didn’t expect that reaction, but I thought that I sure did deserve it. How dare I compare my challenges to someone who can’t talk? How dare I compare my challenges to someone who had absolutely no sense of social skills and was locked in their own world? I wasn’t the face of Autism then, nor am I now. And I still struggle today with using the word “autism” when it comes to me. That’s one of the reasons why I still use the term Asperger’s. 

Who do you see when you think of Autism? Let me guess. Probably someone who is white. Probably someone whose gender assigned at birth is male. Probably someone who has marked communication challenges, maybe someone who is non-verbal and carries a communication device. Probably someone who openly stims; flaps when happy, rocks when anxious. You don’t see me. 

My friends didn’t see me either. That really hurt. I thought I had cracked the case of why I felt so different all the time. But I guess not. There was no way that I could have Autism, specifically Asperger’s. So, after apologizing profusely and trying to brush off the whole incident, I never spoke of thinking that I had Autism again. It always remained a thought in the back of my mind. But it wasn’t until college that I seriously considered the possibility of being Autistic again. 

So, when I say that it depends on the day whether or not Asperger’s is part of my truth, I say it for everyone else and society. Some days I don’t want to be judged for “faking” Asperger’s and doing so to “seek attention”. Some days I don’t want people to be surprised that I have Asperger’s because I don’t look like I have it. Some days I don’t want to be brave and live in my truth. The truth is that I was diagnosed with Autism Spectrum Disorder at age 19. The truth is that Asperger’s doesn’t exist anymore. But I make it exist for you and sometimes me, because of how you impact me. Because when you think of someone with Asperger’s, you probably see someone like Dr. Sheldon Cooper from the Big Bang Theory. Someone very smart, very passionate about something, sometimes very socially incorrect yet in a funny way. And so, me having Asperger’s may seem to be a stretch, but it’s plausible. Me having Autism is another story. Sometimes I feel like me having Autism is another story too, despite knowing in my core from the time that I was 12 years old that I am on the Autism spectrum.

Some days I accept the part of myself that has Autism. Some days I reject the part of myself that has Autism. It depends on whether I choose to be brave or choose to stay safe inside secrets. I also want to say that I know for some Autism is everyday part of their truth and no day a secret. This is because they “look the part”. I find these people to be our teachers in the subject of acceptance with their minds so unique and perfectly different. I truly admire their truths and their struggles. 

This morning I woke up and the first thought on my mind was to write this. I guess today I am feeling a little bit brave. I hope you see me for it, without judgement. 

2 thoughts on “My Diagnosis Journey and Why I Still Use the Term Asperger’s- Part 1

  1. Tears are just rolling down my face! My God I’m so proud of you. I hope you can start to enjoy your truth and enjoy LIFE according to your own rules. 😍🙏🏾

    Liked by 1 person

  2. This is so ON POINT! Unfortunately in this day and age, people still label illnesses and differences in people. People with handicapped tags in their cars look “normal” yet they’re often criticized because they have invisible illnesses. You are the second person in our lives with Aspergers and, while HE may fit the typical idea of what society says it looks like, I have learned in my lifetime, that you cant take ANYTHING for granted. What is supposedly the norm is not. I applaud you for owning your truth and hopefully those who are going through what you are so admirably coping with day by day, minute by minute get to read this and know they are first and foremost a human being and should NEVER be defined by what society says someone suffering from silent illness should look like. I am so very proud of you.💖

    Liked by 1 person

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