Category: The Basics

What Your Boomer Parents Will Likely Never Understand

On September 14, 2024

Let me start by saying that I love my Boomer parents dearly and am fortunate to have a good relationship with them.

And I have felt like the black sheep in my family for almost my entire adult life. I feel ashamed that as an adult I have struggled so much to secure stable employment. Don’t even get me started about trying to find a job that pays you what you’re worth. Does that unicorn even exist?

Before my AuDHD diagnosis, when I had yet to develop an understanding of late-stage capitalism (or “terminal” capitalism as I darkly call it), I couldn’t understand why no matter how hard I tried, I failed to secure stable, paid, enjoyable work.

During my college portfolio show, I was recruited to work as a Production Designer for a local retail brand. They sold formal dresses for prom, homecoming, quinceañeras, and other special occasions. We don’t need to get into the irony of how I boycotted my own prom because as an Autistic I felt othered by my fellow students. Oh, and that dancing in public is one of the most terrifying things for me!

I didn’t stay at that first job long. The owner, my boss, ended up being a tyrant who screamed at my coworkers (thankfully never me), eagerly talked sh*t about clients, demanded we work overtime without extra pay, sincerely declared she could spot a closeted gay man, and generally enjoyed flexing her power in uncomfortable ways.

I asked my parents what I should do. With such a stressful work environment, continuing work at that job did not feel sustainable. Plus, I feared the day that my boss would catch me in her cross-hairs. Why should I tolerate being paid barely above minimum wage to deal with such an explosive and unkind human?

But I also didn’t want to leave my very first real job out of college. Also, I had been recruited – they had wanted me. As someone, who rarely catches the attention of anyone, this made me feel special. I remember laughing to myself cynically as I thought about how my next job would not so straightforwardly seek to employ me.

My parents agreed. I should “stick it out.” They cautioned me to keep the job for at least one year, or else it would start me off on the wrong foot in my career. After a year, I could quit, and move on to another job.

I however could not fathom how that would be mentally possible. My stress was maxed out, I worked in fear, and I was doing work beneath my skill level for not that much pay. I could barely make it through the next week, let alone another month, and certainly not an entire year. I paled to think of what would be left of me after a year at that job. Would I recognize the ghost of a person who emerged after one whole year there? It did not feel remotely worth the agony.

So, I did what I have often done in my adult life, I honored my inner voice, and quit that job.

I worked for some time as a Freelance Graphic Designer, which was the closest I’ve come to the “starving artist” trope. But I continued to dream of being a small business owner. I now know this dream was largely fueled by my neurodivergent need for control, routine, and work I could live with doing the rest of my working years.

In 2021 after closing yet another failed business and receiving my AuDHD diagnosis, an understanding finally clicked into place. It was the answer I had been searching for my entire working life – the answer to the question of why I couldn’t secure stable work that offered a living wage.

I have AuDHD and only about 61% of adults with Autism are employed in the U.S. That number drops to 48% worldwide.
We’re living in late-stage capitalism which for a multitude of reasons renders my ability to secure stable work with adequate pay or operate a small business near impossible.

Millennials in general struggle with things our parents did not:

Sky high college tuition and student loan debt
Rent that has increased faster than salaries and was recently found to be controlled by an illegal algorithm
A global pandemic
Costly extreme environmental phenomenons: way more wildfires, hurricanes, tsunamis, earthquakes, floods, land slides, scorching hot days
A federal minimum wage of $7.25 that hasn’t changed since 2009, an abnormally long time for no update.
A housing market few can buy into because, again, salaries and home prices have not increased symbiotically, the way they once used to.
A business landscape in which way fewer “mom and pop” businesses exist, and increasingly, monopolies reign supreme

Sure, our parents faced their own unique struggles. But generally speaking, the challenges Millennials and younger generations face today are monumental by comparison.

Then add into the mix that you are neurodivergent or have another disability, and the hope of someday securing a comfortable life, with stable work, starts to take the shape of a silly fantasy.

Our parents were taught to, “pull yourself up by the bootstraps” and if you “put in the time and work hard enough, everything will work out”. Or basically, “A+B=C.” Easy peasy, right? When I tell my parents about my employment struggles, they give me versions of this response. Today, however A+B ≠ C. Instead the calculation is some hella complex mathematic equation that few have the ability to figure out.

With late-stage capitalism in full swing, bootstrapping and work ethic typically only make a difference if you’re born into money and have connections… and it also really helps if you’re a white neurotypical man.

We live in an era where no matter how much hard work you put into your career, it often doesn’t lead to success. Instead, all bootstrapping and working hard will get most neurodivergents and even neurotypicals, is burnout, a deep feeling of failure, and the fervent need to escape to the countryside to live on a homestead.

As much as our Boomer parents may be aware of the current problems we face, they often remain stuck in the same mentality. I get it, strategies that have been ingrained into you your whole life, strategies that have even worked for you in the past, are hard to put away.

It’s just a shame that a lifetime of experience, wisdom, and knowledge continuously gets stuck in this loop of outdated ideas, rather than being put to valuable use. I wish I could ask my parents for their insight, and they would filter their response through a modern lens that understands the their old approaches are not the best solution for me in 2024.

What’s the result of being stuck with old ideas and no new strategies? An inability to even begin the job hunt.

Brains are smart. Brains are logical. That’s kind of their whole deal. But many of our brains have been fooled too many times into believing that job hunting will actually secure us stable employment and a living wage. Through trial and error, our brains have come to know better than to believe that lie. Or at least our brains are convinced it’s a lie…

Mine being an ADHD brain, knows that I am deficient in dopamine. So it’s not going to fruitlessly dispel what little dopamine I have for a task that has proven in the past to be so wildly unsuccessful. No, that would be a dangerous waste of resources.

And so we remain stuck, in this exhausting loop of under-employment, searching endlessly for a solution with what little energy remains.

The entire time I’ve been writing this blog post, “Closer to 30” by Sarah Beth has been playing in my head. And honestly, it sums up this post so succinctly.

My Neurodivergent Chronic Pain Story

By Kaïa

On June 3, 2023

In ADHD Info, Autism Info, The Basics

Get under your weighted blanket and grab a cozy drink. My chronic pain story is a long one! And yes, I’m about to get spicy…

Travel back in time with me to about 2010 when my spine twisted so severely that it pulled my left rib out. The cause? Scoliosis and Kyphosis… and trying to do too many sit-ups, if I’m being honest (har har). I’ve been dealing with back pain ever since.

Somewhere along the way, the pain became my daily companion, and eventually reached chronic levels. Then in October of 2019 I was hit by a car while crossing a city street and landed on my back. To this day I have residual injuries from that traumatic event.

After the rib incident, I sought treatment for my back pain from my doctor. My well-meaning chiropractor at the time told me that if I didn’t seek treatment, I would likely have trouble walking by the time I was 30. My doctor instructed me to write directly to my healthcare provider. I spent hours composing a detailed letter, pleading to receive treatment. But still I was denied care because my condition was “not severe enough” and was “life long.” Ultimately because my condition couldn’t be “fixed”, my healthcare provider refused to invest in helping me feel better because it would cost them too much money in the long-run. Huzzah, Capitalism rears its ugly head!

When my back pain worsened around 2017, I brought my mom with me as moral support to my doctor’s appointment and demanded I receive care for my back. My (new) doctor acted confused that I had been denied care in the past and I finally began a life-changing journey of consistent Physical Therapy that has made a world of difference.

“But Kaïa,” you ask, “isn’t this blog about AuDHD, not chronic pain?” Well, yes. But the two are linked. And boy, what a relief it was to learn that! Let me tell you why…

A particular doctor’s appointment will forever stick out in my mind because for years the information my doctor gave me puzzled me. After another round of spine x-rays, my doctor remarked, “Looking at your x-rays I see no reason why you should be experiencing such a high level of pain. The degree of your spine’s curvature is so small that patients like you typically experience no pain.” She wasn’t denying my spine was abnormal, or trying to dismiss my pain, she was merely making an observation. But it led me for years to wonder why if my scoliosis and kyphosis were both mild, they were causing me chronic pain?

It wasn’t until I received my AuDHD diagnosis that I uncovered the answer. As neurodivergents we possess a hyper-sensitive nervous system. We’re also prone to hyper-mobility. As a result people who are neurodivergent are more likely to also deal with chronic pain.

I’ve been dealing with my back pain for roughly 13 years now. I’ve put in a lot of determination, commitment, time, energy and yes tears to get where I am today. It’s been an exhausting journey that has tested me. I’d like to say that I’ve done the hard work so now I feel all better. “Ok, bye guys, this blog post is all done!” But it’s not that simple.

Is my body stronger? Yes. Is my back straighter? Hell, yes! Is my body more resilient? Most of the time. But for every bit of progress I make, another year passes, my body inevitably gets older, and the pain grows a little more. So my progress is more akin to keeping pace with my changing body, and slowing the degradation of my condition.

And that’s where I’m at today in my chronic pain story.

I want to share the treatments, mindsets, strategies, and tools I’ve implemented (and accumulated) in my 13 year journey. These are the things that have worked for me and it is my hope that they’ll work for someone else too.

If you’re dealing with chronic pain or caring for someone who is, know that I see you, and I want to help you. No one should have to carry the burden of chronic pain alone. It’s already a heavy enough burden for one person.

I’ll be honest though, I’ve been reluctant to write a post like this, even though it continues to be a topic I want to write about. Please remember, I am not a doctor, and this is not medical advice. We are all unique, and what works for me might not work for you.

5 Treatments I Actively Pursue:

Chiropractor: Cupping, Taping, E-Stim, Graston.
Physical Therapy
Pain Therapy
Acupuncture
Regular talk therapy

5 Mindset Shifts I’ve Made:

People are probably going to gaslight you whether they mean to or not. Try not to let it discourage you in your pursuit of treatment.
Our minds are powerful tools! Addressing mental health issues is important in decreasing your pain levels. When we are joyful, our bodies stop paying as much attention to pain, and our pain decreases!
Know that you are an imperfect human (we all are) and you can only do so much. Some days I may not have the physical or mental energy to complete all of my PT exercises, and that’s ok. I am an imperfect human doing my best! As my friends at Center For Body Trust say, “Aim for a C-” and whenever you can reach for that A+, great!
Be respectful of and gentle with your body.
Recognize that there are activities you can no longer do comfortably. I used to love running and jog around my neighborhood. But my body can no longer support this activity.

21 Strategies & Tools I Implement:

I don’t know what I would do without my foam roller. It’s the most powerful tool in my arsenal and I have even shoved it into my suitcase on occasion when I travel.
Don’t be afraid to ask someone you trust to help you self-advocate for the care you need!
You can switch doctors if your needs are being ignored. I switched doctors when I was originally denied care, and found one who (shocker!) actually provides me with care.
Motion is lotion! Exercise often (but within reason) to strengthen the muscles that specifically support where your pain lurks. A huge part of my journey to less pain has been building muscles all over my back to support areas where my spine makes my body work too hard.
Drink lots of water. Did you know that when you’re dehydrated your pain levels increase?
Use the spoonful of sugar strategy to help you get through less appealing tasks. But remember, to be kind to yourself and rest if you’re in too much pain to take on that task today!
Delegate painful tasks to others. My partner has kindly taken on cleaning chores that are now too tasking for my body.
Be ready for anything! Did your shoulder suddenly start throbbing yesterday and it still hasn’t stopped? Adjust your physical therapy plan to focus on exercises and stretches that target your shoulder.
On that note, exercise the pain out! It blew my mind when I learned that gently exercising a troubled muscle usually makes it feel better because using the muscle forces it to release tension.
Go on a gentle calming walk. Go breathe in that tree air!
You can eat ginger to soothe nausea and take a magnesium supplement to ease pain.
Biofreeze is your friend! Other icey/hot balms like Tiger Balm and Bengay are good too!
Having a massage gun and/or a hand-held (plug-in) back massager around for emergencies can eliminate a lot of pain!
I keep a TENS unit around for days when my pain is high. A TENS unit is like a portable, at home E-STIM machine that you wear under your clothes. I actually wore mine to a wedding, under my bridesmaid dress because I knew I would be standing all day (something that is really challenging for my body).
Distract yourself from the pain. In too much pain to leave your house comfortably? Call or video chat with a friend or family member to seek emotional support and distract yourself from your pain. No energy for socializing? Watch a TV show or movie, or listen to a podcast or favorite playlist to distract yourself. Music is especially healing for me and I have a specific playlist for each of my different moods.
Socialize in-person too! Feeling connected to other humans and fostering good mental health is an important step in reducing your pain.
Snuggling with a pet is also considered medicine in my book! Growing up, my parents always referred to our cats as “nurse kitties” whenever someone was sick.
Take a hot shower to calm your angry body.
Drink tea. It’s like a warm shower for your insides? No. Just me? Ok.
Something I’m trying to be better about is meditating more regularly. My ADHD hates meditating though, whereas my Autism loves it. I use the insight timer app (because it’s FREE). But the Calm app is good too!
I sleep in a nest of pillows. I don’t know how else to describe this… But I have a pillow for each arm to rest on when I lay on my side, and a pillow that goes between my knees. I joke that it’s my “princess and the pea” situation.

It can take years to finally successfully manage chronic pain. I’m not sure my pain levels today (though still a constant companion) would be considered “chronic”. So rest assured, the effort is well worth it, and yes, you too will get there someday.

I believe in you!

Autistic Burnout & Recovery Tips

By Kaïa

On April 26, 2023

In Autism Info, Masking, Sensory Issues, Social Anxiety, The Basics

In 2022, I began the arduous process of changing careers. Why? Because I was burnt out. The field I was working in (Graphic Design) ended up being highly competitive and ultimately not my true skill set.

For years, I had been working so incredibly hard just to find a shred of work, that I lost almost all my desire to work on personal creative projects in my freetime. I hope someday I’ll enjoy photography and illustration again… but for the moment, I’ll let those interests take a breather.

Recently, I discovered my burn out goes even deeper than “traditional” burn out. I’m also dealing with neurodivergent burnout.

Though, I find my neurodivergent burnout interacting with both my Autism + ADHD, I’m going to primarily talk about Autistic burnout today since there is more information available about it.

What does Autistic burnout look like for me?

I’m SO tired all the time… even though I get a solid 8 hours of sleep most days.
My anxiety is a constant companion and sometimes I don’t even know why I’m anxious.
It’s difficult for me to complete even the simplest task because it takes steps to complete, and those steps require too much brain power when my brain feels fried.
The wall in my mind is even more solid than normal and it is especially difficult for me to access information. So I find myself stumbling over my words more frequently.
I have a much lower tolerance for socializing. My partner now assumes that I will be too socially exhausted to play videogames with our friends on the weekend. Virtual socializing has always been especially taxing for me because it’s extra challenging to read social cues over just video or audio.
I’m experiencing an increase in selective mutism. I normally experience some selective mutism when I first wake up in the morning or when I don’t know how to navigate a social situation. Since regular burnout often results in a shorter temper, my selective mutism is activated more frequently.
I’m so overwhelmed that it’s extra hard for me to remember what I need to remember. I find myself making sloppy mistakes as a result.
Oh my goodness, I’ve never been so clumsy in my life! I think I’ve burned myself on the stove more times in the last few months than I have in my entire life.

I’ve been researching and researching what to do to help both of the types of burnout I’m experiencing. But being the self-aware superstar that I am, I’ve already been doing most of the recommended treatments.

You’d think this would make me feel good. But I’m left with the question, “Well, what do I do now”? The burnout is still here, alive and well.

Here are a few things I’m trying:

I’m socializing exclusively with friends and family who encourage me and who I can be less masked around.
I’m seeking comforting activities that give a more immediate reward like: watching old tv shows / movies, taking a bath, playing (relaxing) video games.
I’m seeking mental health support.
I’m temporarily reducing social activities and other more stressful tasks from my to-do list.
I’m taking more frequent breaks during the day.
I’m exercising more! Gotta get those happy brain juices flowing.
I’m taking a shower before bed to relax better.
I’m sleeping with a fan, use noise canceling headphones, wear loop ear plugs, and wear sunglasses more often to eliminate sensory issues.
I’m building tools to address and prevent future burnout. Problem solving always helps my brain feel better!

The best advice though? Know your personal symptoms of burnout and take preventative measures… before you actually get burnt out.

I now work as a Copywriter where my natural talents are being put to use. I realized the importance of pursuing a career that uses your innate strengths versus a career you are simply passionate about. I know I made the right choice because now my work excites me, completing my work is easy, and I leave work to happily write in my personal time.

What’s it Like Having Combined ADHD?

By Kaïa

On February 3, 2023

In ADHD Info, How You Can Help, My Childhood, Planning & Organization, Stimming & Fidgeting, The Basics

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!

I am highly creative and have an imagination that works in ways a neurotypical individual’s just doesn’t.
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!
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!
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!
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.
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!
Like your dog or cat, I too get the zoomies!
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”.
I lose my phone around my home all the time. Most of my other belongings have a specific place they live for this reason.
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!

What is Rejection Sensitive Dysphoria?

By Kaïa

On January 29, 2023

In ADHD Info, How You Can Help, Social Anxiety, The Basics

You know when someone says something mean or otherwise reacts negatively to you, it doesn’t feel good? Well, when you have RSD (Rejection Sensitive Dysphoria) your brain sees negative social interactions everywhere.

RSD is a common condition that tags along with ADHD like a clingy toxic sidekick. In fact, I’ve read that anywhere from 90-99% of those with ADHD experience RSD. Now, I’m not sure what the exact number is, but we can assume it’s a lot of people!

For me, RSD is without a doubt the primary way I experience ADHD. It is such a prominent part of my day to day that it is the lens through which I interpret all social interactions. As a result, I don’t know who I am without RSD. That being said, unlike other aspects of my ADHD and Autism that I consider a gift, RSD is something that I want to get as far away from as quickly as possible!

Rejection Sensitive Dysphoria is described as being like the rejection neurotypicals feel after a negative social interaction… but on STEROIDS. It is said to be a “physically painful emotional experience”. RSD takes the anger, embarrassment, frustration, and sadness of a negative social interaction to another level. When you have RSD you might also perceive positive and neutral social interactions as negative. You might dwell on a particular social interaction for days… or even weeks!

This is my experience with RSD. It whispers cruel things in my ear that I can’t help but listen to, and in listening I create a wound that begins to fester. I scratch at the wound day after day and the pain continues.

How exactly do I experience Rejection Sensitive Dysphoria?

I am a people pleaser. I will bend over backwards to ensure that you have zero reason to dislike me because 97% of the time I can’t tell if you truly do or not.
It is extremely difficult to stand up for myself, express opposite opinions / preferences / interests, set boundaries, and make decisions that affect others because it feels like I’m sabotaging myself. It feels like I’m inviting someone to dislike me.
I avoid strangers and other social interactions with new people because it is especially challenging for me to read social cues when I’m unfamiliar with someone.
I go over and over the same social interaction in my head, picking it apart and berating myself for it not having been “perfect”.
If I engage with my RSD thoughts, they’ll lead to a panic attack of confusion where I conclude that I’ll always be second best and nobody’s true “favorite”.
I try to stim away an RSD thought before it can gain traction. I’ll make a sound, say a word, or make a sudden movement to distract my brain.
I get quietly enraged if someone accuses me of not giving them my best effort because I genuinely do, in order to avoid feelings of RSD. If I truly haven’t given you my best effort, it is because I trust you as someone who genuinely loves me and understands my needs.

So as you can see, RSD is a force to reckon with. It plays games with one’s mind.

How can you help me prevent my RSD from surfacing?

Over explain yourself, your behaviors, and what emotional state you are in. For instance if you receive a text from me and can’t respond immediately, let me know why. Also, whenever possible respond to a text with words (versus an emoji) so I get as much context as possible.
If I let you know (or you see that) I’m experiencing an RSD moment, acknowledge it, and quickly help distract me away from it. Distraction has proven to be the most powerful tool for me when it comes to fighting RSD.
Help me talk to strangers and make an indisputably positive first impression.
Help me stand up for myself! Remind me that you support me in setting boundaries and saying “no”. It makes me feel so loved when my friends do this for me.

It is frightening that Rejection Sensitive Dysphoria is so wrapped up in my true personality. As I’ve said previously, it has been confusing trying to disentangle myself from what is neurodivergent behavior and what is me, Kaïa. It’s certainly a challenge. But with a little more emotional transparency and extra love from you, I can get there.

How does masking work for Autism & ADHD?

By Kaia

On December 22, 2022

In ADHD Info, Autism Info, Masking, Social Anxiety, The Basics

I started to write a completely different blog post than this one… But I quickly realized that a solid understanding of “masking” was needed to understand the content.

So let’s take a step back, and define masking.

What is masking? It’s a number of different behaviors that (for lack of better terminology) “higher-functioning” people with Autism or ADHD do to blend in and appear “normal”. Masking is metaphorically speaking when those with Autism or ADHD wear a mask over their neurodivergent behaviors. They cover up their true personality to conform to what society expects from them.

I’ve been told that I am an expert masker. How do I mask? I force myself to make eye contact, I laugh often to cover my social anxiety, I mimic emotions, and I nod incessantly to show I’m listening.

These are just a few pieces of my mask that I’ve identified. Some of these behaviors are difficult for me to perform, while others (like the nodding) simply annoy me.

I’m still disentangling myself from my mask and determining what is “Kaïa” and what is my mask. I’ve been unknowingly masking for so long that I cannot easily flip a switch and turn off my mask. So the process of unmasking is confusing, difficult, and quite honestly an uncomfortable experience.

Why is it unpleasant to remove my mask? My mask makes me feel safe.

But masking is a double edged sword. Not to mention that masking shouldn’t even be necessary. And for something unnecessary, masking takes a surprising amount of effort. In fact, the energy vacuum created by my own masking is in part what led to my diagnosis. So thank you, I guess?

For months, I found myself stuck on the couch on my days off from work. Sometimes I would be trapped there for a solid 2 hours. Those of you who know me well, know that I am a driven individual who likes to always be busy. But as much as I mentally wanted to go get my to-do list done on those couch days, and otherwise enjoy my weekend, I physically could not get my legs to move. It was extremely frustrating because I felt like I was wasting my time. I felt like I was no longer in control of my own body…

I’ve since learned that a large part of why I found myself perpetually imprisoned by my couch was because I had used up too much of my finite energy masking. In fact, I had used up SO much energy that I had used more energy than I literally had available. Sure, I went to sleep every night for a healthy 8 hours. But it wasn’t enough because I had reached outside of my energy bank to steal energy from the future.

As I continue to peel back and remove my mask, I still find myself stuck on the couch some days. But I don’t get stuck there for as long as I used to. And I find great comfort in knowing why I’m stuck there, and that I am learning how to get “unstuck”.

This is all goes to show how years of masking can truly take its toll.

So when you see me next, if you notice I am behaving a little differently, maybe I’m acting a little more “awkward”, you shouldn’t be concerned. You certainly shouldn’t judge me for it. Instead, you should feel honored.

If I let part of my mask slip away in front of you, I’ve done so intentionally, and it is truly the highest compliment I can give you. It means I feel loved by you, that I see you as someone I can trust to keep me safe, and that you are someone who will make me feel comfortable as my true AuDHD self.

Why I don’t want a “cure” for Autism

By Kaia

On December 4, 2022

In Autism Info, The Basics

The idea is finally starting to phase out. But early on it was thought that Autism was something that needed (and should be) cured.

Though there are definitely some individuals who are debilitated by Autism, and all of us with ASD experience at least some aspects of a disability, these struggles largely endure because of societal expectations. Expectations of how a “normal” person should communicate, present, and otherwise function in the world.

But just because something has been deemed “normal” doesn’t mean it is the only way to do something. There are in fact a plethora of ways to happily, safely, and kindly exist in the world. A “you do you” kind of mindset should be adopted if we are to create an inclusive and compassionate society.

This is the round about way of me explaining how Autism is not 100% a disability. I and many others with ASD are in fact hurt that some people think it is. Autism can certainly make life challenging at times. But if we look at Autism as a whole, rather than picking it apart and latching onto the negative aspects of it, Autism becomes more of an evolutionary variant from the “normal” humans society has come to know and expect.

So to approach Autism as something that needs to and can be cured is the equivalent of trying to cure someone for being a… human. Now how silly is that? It’s like trying to cure someone for being left-handed (a history that shares many commonalities with that of Autism).

Autism is not a disease.

Autism is not fully a disability.

Autism is not something that is wrong with me or others like me.

Again, challenges created by Autism largely exist because society expects me to behave and live in a way that is simply unnatural for me. If Autism was the norm, and “neurotypicals” the oddities, would it not be difficult for neurotypicals to function in a world designed to suite Autism?

So please, stop thinking of Autism as something that can and needs to be cured. It is insulting. Whether I like it or not, I have AuDHD. It is who I am. Without it I would not be myself. Suggesting I need to be cured, is like suggesting I remove a major part of my identity.

To cure my AuDHD is to erase myself.

Why change can be so difficult for those with Autism

By Kaia

On November 15, 2022

In ADHD Info, Autism Info, How You Can Help, Masking, My Childhood, Planning & Organization, The Basics

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 “spo o n 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:

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.
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.
Respond “Yes” to the calendar invite I send you for our planned time together.
Let me know when you are leaving to meet me somewhere, or when you are leaving to pick me up. I will do likewise!
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.
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.

How To Talk About Autism

By Kaia

On September 7, 2022

In Autism Info, How You Can Help, The Basics

For starters, I thought I’d explain some basics I have learned in my short-time understanding my diagnosis. I want you (my friends and family) to (at least) have a basic understanding of Autism, know how to speak about Autism, and see Autism with an open-mind. My hope is that not only will you understand ME better, but that you will know how to better support others that you meet with Autism.

When I learned I was getting tested for Autism (and by proxy, ADHD), I tried not to tell everyone… But as I’ll get into later, I do not experience “vulnerability” in the same capacity as most people. So it was really difficult for me to not tell everyone about how I excited I was to be getting tested. Or in other words, I’m an open book when it comes to any personal details about myself (hence this blog).

I learned quickly, that I needed to preface the news of my testing by saying, “I’m actually really excited to get tested because it could potentially provide me with tools to make my life easier”. I discovered I needed to say this or else I would likely get a response along the lines of, “Oh… Well, I don’t think you’re Autistic. You don’t ‘act’ Autistic.” While this response from my friends was well-intentioned… it was also discouraging, unhelpful, and ultimately unsupportive. These friends, while trying to be kind were including their own disability bias in their response (instead of thinking about how I actually felt).

So how should these have friends responded? Something along the lines of, “Good for you! What made you interested in getting tested? Let me know how I can support you, moving forward.” This response is a solid reaction when learning about anyone getting tested for a disability or medical condition they think they may have.

Which of my friends gave me a version of this response? I received this response from friends who work in medicine and who have been professionally trained in how to respond to this type of situation. This goes to show that we could all use a lesson in the basics of how to best support individuals with disabilities.

Another point of confusion my friends and family experienced was over the infamous Autism “spectrum”. Now, I am of course no expert in Autism, and I am learning with you. But in my research I have come to understand the spectrum as a “rainbow” (yet another reason to love rainbows). Each of the colors that make up this rainbow is tied to a category of Autistic traits (i.e. motor skills, communication skills, social skills, etc). To be diagnosed with Autism, you must have traits from each of these categories, with at least one of the categories being more dominant.

This is why describing an individual with Autism as “High-Functioning” or someone’s Autism as “Mild” is accurate. Someone might lack communication skills, but be a mathematical genius (something not visible to the naked eye). But because their lack of communication skills is so obvious, they may get labeled as having “Severe” Autism. However, judging someone’s Autism solely based upon what you can see, fails to give credit to less apparent superpowers that individual may have.