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. 

An Adventure

Jump in front of it.

It was a moving train. The speaker was my brain. To be clear, let me say it again, the speaker was my brain. God only knows how many times I’ve been asked if the speaker was a voice. It’s not a voice. Sometimes professionals have even told me that I am hearing a voice or a hallucination instead of my own thoughts. That’s incorrect. It is my own thoughts. And truly, does it even matter? Both are disturbing. Both are distortions and distracting and dark and disorienting and distressing. Just in case you needed other “d” words to describe suicidal thoughts and voices. Okay, small rant over.

Some might say my brain is fucked up. And sometimes I might agree, but I would add that it is in an interesting, kind of brilliant like way. You see, it is like there is a constant theatrical experience going on in my mind. A play or a musical depending on the moment. My brain like a stage, my thoughts like a full cast, the interactions between them a full-length script showcasing different personalities and ways of speaking and all sorts of conflict. So, cue our next character. 

Bud, is that a good idea? No, that’s not a good idea. Come on, you’re doing a great job. You just have to get to grandma’s house.

I really was doing a great job. I had ridden the LIRR from Deer Park to Jamaica. I had ridden the E train to 63rdstreet. Pause. If you know the subway system, you are probably thinking, 63rdstreet? Yes, 63rdstreet. The E turned into the F; and I didn’t freak out. I remained calm. I had walked up the five blocks of people laden city streets from 63rdto 68thstreet, arriving at Hunter College. I had navigated a building I was unfamiliar with to take an exam that I felt anxious and unprepared for. I had taken the 6 train to the L train to Morgan Ave in Brooklyn. I had navigated an unfamiliar area to arrive at an unfamiliar restaurant that served an unfamiliar type of food. Pause. The restaurant was dimly lit with a great playlist, served an all vegan menu, and had shelves of books covering the walls. A haven for Makaylas. Play. I had walked through this unfamiliar area for about 20 minutes so that I could allow myself to enjoy a vegan donut, despite always coming down on myself about weight and eating concerns. I had done a lot. For me, that is.

Some might be sitting back saying whoop dee do, you successfully commuted to several places. You successfully used Google maps and dealt with people and tried new things. Congratulations, you are an adult. To those people I say, “Yes, I am an adult. Thank you for noticing. Now, let me educate you about something.” I am an adult with indivisible differences. My brain has special neurons that program my dendrites and axons to have OCD and ASD. Yes, I have Obsessive Compulsive Disorder and I am on the autism spectrum. Omg. Shocker, right? But that’s for another blog post. 

My brain has many rules and not many exceptions. I violated all of those rules. I dealt with bright lights (Fluorescents are the devil), overwhelming smells, sounds so loud that even my noise cancelling headphones couldn’t block them out. I dealt with a change in routine and a change of plans. As a person who lives off of ramen noodles, popcorn, and chips and has lived off saltines in the past, I ate Ethiopian food. 7, again I say 7, sample dishes of Ethiopian food. My extremely predicable, precautious brain guided my feet through an unfamiliar neighborhood. I had done a lot. For me, that is. And I just wanted to end the day off by visiting my grandma. 

Now I stood on the edge of a platform at the Montrose Avenue station, watching the L train race towards me. The time was 5:00pm. Rush hour. Many others stood on that same platform with me, with their bodies that took up space and their germs that silently corrupted the air. The thought of this made my breaths sudden and shallow. 

Deep breath, bud. Deep breaths.

The L train passes me by. One character of my brain sighs at the missed opportunity. Another cheers as if celebrating yet another victory. The train comes to a stop. People huddle towards the door, towards me. Their feet shuffle into the train. Their bodies take up space, my personal space, and continue to crowd in until I have none. This is rush hour. A nightmare for Makaylas. 

I hate you go fucking kill yourself.

Deep breaths, bud. You’re doing great. Just close your eyes and focus on the music. Remember 14th street get off, transfer to the F. Stop number 7. You love the number 7.

“Gloria, Gloria, I think they got your number. Gloria, I think they got the alias, Gloria, that you’ve been living under, Gloria. But you really don’t remember, was it something that they said? All the voices in your head calling, Gloria?” (Gloria, Laura Branigan)

My eyes are closed. My mind wide open, taking in the music. My brain, synapses and all, grooving along to the thumps of the drums and the jumps of my anxiety as the stations go by. 

Grand St. 

I hate you go fucking kill yourself.

Graham Ave. Lorimer St.

I hate you go fucking kill yourself.

“Come on, Eileen. Oh, I swear, what he means, at this moment, you mean everything. You in that dress. My thoughts I confess, verge on dirty. Ah, come on, Eileen.”  (Come on Eileen, Dexys Midnight Runners)

Bedford Ave. 1stAve. 

I hate you go fucking kill yourself. I hate you go fucking kill yourself.

“Easy, ready, willing, overtime. Where does it stop? Where do you dare me to draw the line? You’ve got the body, now you want my soul. Don’t even think about it. Say no go.” (I Can’t Go For That (No Can Do), Hall and Oates)

3rdAve. 14thstreet.

I get off the train, shuffling my feet just as the person ahead and the person ahead does. There are so many people. So many bodies, so little space, so many germs. I need a fight song, something to focus on as I move through this Amazon. I pull out my cell phone. I scroll faster than the traffic moves, down the 80’s playlist I’ve been obsessed with for the past week. I see the song I’ve played dozens of times, obviously one of my favorites. I press play and turn my headphones up. 

“Holding back the years. Thinking of the fear I’ve had so long. When somebody hears, listen to the fear that’s gone. Strangled by the wishes of pater, hoping for the arms of mater, get to me the sooner or later.” (Holding Back the Years, Simply Red)

I walk up the stairs. Take in a breath of air. I can finally breathe and feel space around me. I look around for signs indicating the F line. There are none. I walk to another area, where I see a crowd of people heading towards, no signs. I come to a conclusion; the F line doesn’t stop at this station despite google maps telling me so. Another change in plans. I’m less equip to deal with it than before. Now I’ve dealt with more fluorescents, people, sounds, smells. I’m in a state of sensory overload, and now I have to change my plans. I feel my breath being taken away and my heart starting to race. Anxiety is starting to take over. The fingers of my left hand start to dance, contacting the palm of my hand then jumping off as if a hot dance floor. Repeatedly. Stimming.

Stop fucking stimming. You look like an idiot. I hate you go fucking kill yourself. I hate you go fucking kill yourself.

My fingers continue to dance. Stimming. Self-stimulating behavior. It’s supposed to make me feel better. What’s the point if it doesn’t make me feel better? I reach for the thick coiled mass that is my hair. I grab hard and pull.

Bud, don’t pull your hair. Rake don’t pull.

I take my fingers and comb my hair to the left with my fingers. Repeatedly. Stimming. Hoping to ease some of my anxiety.

It’s okay bud. We will just go the same way that we came. Go take the 6 train. 

I take a deep breath then walk over to the 6 train. More people. More fluorescents. More rats. The fingers of my left hand start to dance. I see the train fast approaching.

Jump in front of it. I hate you go fucking kill yourself.

I’ll keep holding on. I’ll keep holding on. I’ll keep holding on.” (Holding Back the Years, Simply Red)

I ignore those thoughts. Thoughts-0. Makayla- I don’t know how many. I’ve lost count. I board the train. People squeeze and squish in. There is no such thing as personal space on a train during rush hour. I smell people’s body scent, feel the germs of their coughs, feel the texture of their clothing. It feels like all of me is being violated. I feel so overwhelmed. So overwhelmed that I would bang my head against something hard and near if I wasn’t afraid of being taken back to the hospital.

It’s okay, bud. You’re doing great. Just focus on the music. Sing along in your head.

“It’s gonna take a lot to drag me away from you. There’s nothing that a hundred men or more could ever do. I bless the rains down in Africa. Gonna take some time to do the things we never had.” (Africa, Toto)

Fast-forward. Lexington and 68thstreet. Hunter College. Time to walk the busy city streets down to 63rd. I need another fight song. I scroll through my 80’s playlist once again, finally choosing another favorite, turning my headphones all the way up. 

“I gotta take a little time, a little time to think things over.” 

69thstreet. Shit, I went the wrong way. My fingers start to dance.

I hate you go fucking kill yourself. I hate you go fucking kill yourself. I hate you go fucking kill yourself. 

It’s okay, bud. It’s okay. Just turn around. You’re doing great.

I turn around. Keep walking. Because that’s all that you can do. Keep walking. 68thstreet. 

“I wanna know what love is. I want you to show me. I wanna feel what love is. I know you can show me.” (I Want to Know What Love Is, Foreigner)

67thstreet. 66thstreet.  65thstreet. I grab the thick coiled mass that is my hair. Grab hard and pull.

Rake, don’t pull, bud. Focus on the music.

“I’m so excited. And I just can’t hide it. I’m about to lose control, and I think I like it.”

I’m about to lose control, and I don’t like it. I’m about to lose control, and I don’t like it. I comb my hair to the left with my fingers. Repeatedly. Stimming.

64thstreet. 63rdstreet.

Thank God. I’m here. Just one more step to this journey. 

I walk down the stairs. Take off my backpack. Pull out my wallet. Pull out my metro card. Swipe myself in. Put back on my backpack and keep walking. I’m so jittery that I’m practically running. But I’m still moving. Because that’s all you can do. Keep moving.

Fast-forward. Another crowded subway train. More fluorescents, more people, more germs, more rats. More music. Roosevelt Island. 21stQueensbridge. Grandma’s house.

When I got out of the car at 12:18pm, the start of my journey/ adventure into the boroughs, I turned away from the 80’s for a while and celebrated the release of the movie Love Jones on Netflix. I played this song from its soundtrack. 

“They say I’m hopeless. Hmmmmhmmmm. As a penny with a hole in it, penny with a, penny with a hole in it. Yeah, yeah, yeah. They say I’m no less. No less, no less, no less, no less. Than up to my head in it.”

Some say I’m hopeless as a penny with a hole in it. Some say I’m no less than up to my head in it. I have so many labels that people consider indicators of my abilities. OCD. ASD. Major Depression. GAD. Some people think I should just stay in situations that don’t upset me or trigger any bad thoughts or emotions. I disagree. That’s not living. Life is experiencing a range of different emotions. Life is experiencing climbing up some pretty steep mountains and then enjoying the view from the peaks. I want to live despite the negative thoughts I have to deal with every single day. So I am going to keep on climbing. Because that’s all I can do. Keep on climbing. And I’m going to keep listening to my music and having fight songs to get me through. Like this 80’s classic: 

“It’s the eye of the tiger. It’s the thrill of the fight. Rising up to the challenge of our rivals. And the last known survivor stocks his prey in the night. And he’s watching us all with the eye of the tiger.”

We’ve all got the eye of the tiger. I’m going to keep fighting. You too. Keep fighting, my friends.