My life with Autism & ADHD

Category: My Childhood

A yellow rubick's cube against a plain yellow background

How school planted a seed of insecurity.

In elementary school, I was shy, quiet, wore glasses, had trouble paying attention in class, was not particularly athletic, and the poor kid wearing the weird clothes (a struggle that ignited my special interest in fashion). I wasn’t exactly setting myself up to be noticed, other than for teachers to point out my neurodivergent struggles that went undiagnosed.

My teachers would tell my parents,

“She draws horses all over her schoolwork and doesn’t pay attention!”

“She has trouble reading out loud because she’s ‘shy’.”

“She’s so bad at math that she might need to be held back unless her test scores improve.”

I was getting noticed for all the wrong reasons… In particular, the teacher who commented on my math skills routinely made me feel small and afraid. He thought yelling would somehow motivate me into improving.

What I wanted to get noticed for were things like how much I loved animals, how good a friend I was, my drawing skills, and so on. But aside from my best friend, my classmates didn’t pay me much attention. I still remember when all the girls in my 3rd grade class, except for me, were invited to the birthday party of a classmate whom I had considered a close friend.

Needless to say, early on, I felt more like a problem, or a forgotten wallflower, rather than someone worth getting to know. I couldn’t understand why school, homework, and making friends was so challenging for me when everyone else made it look easy.

Middle school was more of the same. Though I did accidentally get invited to a birthday party and meet my middle school best friend.

High school is when I encountered I.B. courses and classmates who were genuinely brilliant. Despite getting mostly A’s, because that’s what my parents expected of me, I continued to struggle more than most. In elementary school, despite my compromised ADHD memory, I had perfected the art of memorization. When a test came around, I would memorize facts to pass the test. But, unfortunately that meant a lot of what I learned didn’t sink very deep into my mind.

I went through high school feeling dumb, but not understanding why. I didn’t otherwise consider myself to be an airhead, detached from reality, or unable to hold a deep conversation. I felt dumb in school but smart in life.

Since receiving my diagnosis, I’ve come to understand that traditional school lessons are 0ften challenging for neurodivergent brains to learn from. In general, teachers are taught to design their lesson plans for the majority, a.k.a. students with neurotypical brains. Maybe I wouldn’t have struggled with math my entire life if lesson plans had been designed for my AuDHD brain.

An early life filled with learning challenges has left me with a deep insecurity that I am not that smart compared to my peers. It certainly doesn’t help that the knowledge I do possess often gets locked away behind a wall of anxiety in social situations.

But take me on a hike and I’ll identify a bunch of native plants and point out that colorful slime mold you didn’t see on the decaying log over there. My dad regularly brags to his hiking buddies about this particular ability of mine.

I know I possess intelligence. That’s not in question here. It’s just not necessarily an intelligence that most people find helpful.

I feel so much pressure at work to show my peers that I’m intelligent and good at my job. But too often, that looming pressure freezes me up.

How do I begin to disentangle myself from a lifetime of feeling inadequate? It’s not as simple as telling myself to just “be more confident” or “believe in myself.” I need to have evidence to believe that. Perhaps, I should track my career wins. Our brains do have a tendency to gloss over the positive to focus on the negative. It’s how we evolved to avoid complacency and not get eaten by that tiger hiding in the grass. Reminding myself of my successes could begin to shift my paradigm.

At this point, though, my insecurity about my abilities as a professional is so deeply rooted that even if my boss or a coworker were to tell me, “You did a good job today,” I wouldn’t really believe them.

Unfortunately, this is one challenge I have yet to overcome.

What’s it Like Having Combined ADHD?

I’ll be honest, when my therapist suggested I might have ADHD, I was skeptical. I didn’t think I had the stereotypical traits of hyperactivity, impulsivity, a hunger for danger, or loud expressions of emotion. I have friends with ADHD and I didn’t feel like I could relate with them in that way.

But as it turns out, there is so much more to ADHD…

The ADHD stereotype we’re familiar with is largely based on the male experience with ADHD. But there are 3 known types of ADHD, and potentially even more unique expressions of it that we don’t even know about yet! 

The 3 types of ADHD are: Hyperactive, Inattentive, and Combined. Hyperactive ADHD is where the stereotype originates from. Whereas, Inattentive ADHD is more common amongst women, and Combined ADHD is believed to be the most common form of ADHD.

I experience Combined ADHD which is a mix of Hyperactive and Inattentive. Though, I tend to express more Inattentive ADHD traits than Hyperactive ADHD.

I’d also like to note that since I have AuDHD, my Autism helpfully fills in many of the holes that my ADHD would otherwise leave empty. So my Autism + ADHD often do a delicate dance. Though sometimes they give up and fight it out like squabbling siblings. 

There is another misunderstanding I would like to clear up about ADHD. Its name is misleading because it inaccurately describes the ADHD experience. ADHD is not an “attention deficit”. Rather it is an attention overload. When you have ADHD you have too much attention to give. As a result it can be difficult to wrangle in and control. It’s like a small child trying to walk an 100+ lb Saint Bernard.

In reality attention is often a strength those with ADHD possess. We just don’t know how to harness and control the overpowering amount of attention we have. Give someone with ADHD a task that deeply interests them, and they’ll be able to focus more deeply on it than a neurotypical person. This is called hyperfocus. I will often be so absorbed in a task that when a friend or family member comes over to talk to me, I won’t hear them because my attention is so consumed in what I am doing.

A natural way in which those with ADHD typically try to direct their attention is through fidgeting. When I was in 5th grade, I remember one of my teachers complaining to my parents that “Kaïa draws horses all over her school work.” The teacher was convinced there was NO WAY I could possibly be paying attention if I was constantly doodling horses all over my papers. 

But in reality fidgeting is a common coping tool for those of us with ADHD. To get our BIG attention under control, we distract part of it with a mindless activity (like drawing), while the remainder of our attention focuses on the primary (more important) task at hand. I don’t remember exactly what happened afterwards with that teacher. But my parents encouraged me to keep drawing… just not too much on the work I handed in to that teacher. 

So what does Combined ADHD look like for me? Below are 10 ways I experience it. There are many more ways, but that would be a long list!

  1. I am highly creative and have an imagination that works in ways a neurotypical individual’s just doesn’t. 
  2. It is near impossible for me to sit still longer than 5 minutes. If I’m forced to sit still, you’ll inevitably see me fidgeting: doodling, stretching, changing how I’m sitting, scratching my head, twirling my hair, or taking a sip of a drink. I will do anything just to move! 
  3. It’s difficult for me to pay attention during long periods of talking (like during work meetings or a friend telling a story). No matter how much I want to pay attention, I am constantly having to remind my brain to pay attention… and even this act itself is distracting! 
  4. If I don’t make a to-do list for the next day, I will be completely overwhelmed by all the different directions my attention pulls me in. I will likely get nothing done. Fortunately, my Autism lives and breathes organization and it knows how to make tools to remedy this concern. But this takes a lot of effort!  
  5. It’s difficult for me to dive into a complex task unless I genuinely want to do that task because it takes a lot of mental energy to control my attention.
  6. If I read your text and don’t immediately respond, I will probably forget to respond for a while (until I awkwardly remember to). If I do text you back, it will usually be an “essay” of a text because I need to share all the little details my attention is grasping onto!
  7. Like your dog or cat, I too get the zoomies!  
  8. If I go to a restaurant, go shopping, or another public place, I often forget my wallet or another possession somewhere. As my grandma used to say about herself, “I’d forget my head if it weren’t attached to my body”.
  9. I lose my phone around my home all the time. Most of my other belongings have a specific place they live for this reason. 
  10. Conversations with me go off on many tangents. 

Unlike my Autism, I feel my ADHD is typically easier to navigate and work around. My Autism is a huge help in creating that work around.

You can help me too by keeping your stories succinct, letting me move around, helping me keep track of my belongings, and forgiving me if I don’t text you back immediately. Please know that I want so badly to pay attention and be present with you, but my brain has other plans! 

Why change can be so difficult for those with Autism

Schedule changes are one of the most common triggers that my friends + family may encounter with me.

Generally speaking, very few of us like change. Change is uncharted territory. It is unpredictable, unforeseen, and may take away something we very much enjoy. But for some individuals with Autism, change can be debilitating.

As neurodivergents we must mask our behaviors to behave how neurotypicals expect us to. Let me tell you, that task alone takes A LOT of energy! And I have to do this every day. Masking one’s Autism may also prove too challenging or confusing for some individuals, and is simply not possible.

I personally didn’t realize how much energy I had been spending for the first 30 years of my life pretending to be ok with tasks or events that actually made me very uncomfortable. So change can be the “nail in the coffin” by making it even more exhausting to fit into a neurotypical world.

For this reason, many of us with Autism plan out our day. In fact, if I had an infinite amount of time, I would plan out my day to the most minute detail. Creating a set schedule for the day can help those of us with Autism predict what events or tasks we need to mentally prepare for, tell us how to best spend our energy, and thereby give us a sense of control in a world that can otherwise feel difficult to navigate. This is “spoon theory” at its finest!

I have been planning out my day ever since I was issued my first planner (book) in middle-school. It was then that I learned the “power of planning”! Back then I was instructed to write down my class schedule, take note of each homework assignment, and record its corresponding due date.

Today, (thank God) I no longer have homework! But I still religiously plan out my day in an effort to spend my limited energy efficiently, and have a better idea of what to expect tomorrow. This ensures that I have enough energy left over for myself at the end of the day… you know, to have fun! If I don’t plan out my day I feel completely lost.

The analogy that always conveniently pops into my head is a wooden row boat floating in a vast ocean, with no destination, and without means to propel itself through the water. The boat is simultaneously floating around, but stuck, and heading no where in particular.

My ADHD makes my need to plan even more critical. ADHD causes me bounce around from task to task, making it difficult to track how much time I’m spending, and thereby making me take way longer to complete basic tasks. Planning out my days keeps my ADHD productively occupied, and makes me feel accomplished. In addition, once I have a plan for the day, my Autism brain memorizes it fairly well, and usually prevents my ADHD from also forgetting what I should be doing. I’m grateful that in this sense my Autism can often keep its ADHD sibling in check.

However, when changes arise during the day, no matter if they’re good or bad, they can really throw me off. Changes to my schedule often send me in a downward spiral of frustration and confusion. As a result, I sometimes end up spending a lot of time trying to rebuild my sense of stability. This frustrates me further, because it often feels like I’m wasting time. But I’m working on being gentle with myself, and recognizing that even though this unforeseen change was likely unnecessary, the time I need to recover is.

Fortunately, with practice I’ve gotten pretty good at staying calm and talking myself through unexpected events. I’m also better at recognizing good changes in the day (like a friend suddenly inviting me to hang out that evening) as something truly “good”. But it can still feel like that little bit of control I have managed to scrape together is being stolen away from me. It can feel unfair. It can feel disorienting. It can feel defeating.

So how can you be more mindful of my (and other’s) schedule change sensitivities? Here are 6 ways you can help:

  1. Try to make plans with me only if you are certain you will be able to keep them. If your plans do change, please try to give me as much advance warning as possible. Even if this means letting me know that the plans might change.
  2. Be a good communicator. Be honest + open about how you want to spend our time together. Clearly communicating our plans will help me know what to mentally prepare for.
  3. Respond “Yes” to the calendar invite I send you for our planned time together.
  4. Let me know when you are leaving to meet me somewhere, or when you are leaving to pick me up. I will do likewise!
  5. If plans are canceled, if possible reschedule the plans immediately. Rescheduling will help me overcome the schedule change by knowing the canceled plan will still happen.
  6. Don’t take it personally if I am distant, vague, or unemotional when you cancel plans with me. I am trying to protect you from my tsunami of emotions.

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