Category: Autism Info Page 1 of 2

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!

What is it Like to be Extremely Self-Aware with AuDHD?

By Kaïa

On May 31, 2023

In Autism Info, Sensory Issues, Social Anxiety

I am extremely self-aware. Most of the time, too self-aware. And I’m learning that neurodivergents in general tend to fall on the edges of the spectrum when it comes to self-awareness. We’re either extremely self-aware or we lack a sense of self-awareness entirely.

For me, being hyper self-aware has led some individuals to praise me for being intuitive. Whereas others scold me for being “paranoid”.

What does being extremely self-aware look like for me?

I notice every. little. thing. going on inside me: I catch health concerns so early that my doctor often doesn’t know what to make of it at first. Take for instance my alopecia that took 1 year to diagnose because I caught it so early doctors couldn’t initially detect it.
I deeply understand how my mind works: Therapists frequently tell me that “I’m already doing everything I should be” or that “I seem to already have all the answers”. However, my RSD feeds into my overt self-awareness by making me overthink my self-aware thoughts. So even though others may tell me “I already have all the answers,” it’s extremely difficult for me to come to this conclusion on my own.

I have also lived most of my life being haunted by the feeling that there was a piece of information I was missing about myself… my AuDHD diagnosis. My self-awareness knew for many years that I was neurodivergent, but had no name for what I was experiencing. When I asked for help, I was told I would “outgrow it”.

Having an extreme sense of self-awareness often makes it difficult for me to find the help I need because I typically identify problems that are too unique to easily solve.

Fortunately, I inherited a love of gathering data from my dad and I truly enjoy digesting as much information as I can. I’m genuinely curious about my “true self”. I want so badly to understand her and how my brain works. I know that this process of understanding is a life-long journey though, for all of us.

There’s a quote from David Bowie that describes this concept perfectly, “Ageing is an extraordinary process whereby you become the person you always should have been.” I’ve always felt myself to be in the constant pursuit of uncovering who I truly am, and finally being able to comfortably be my most authentic self.

So yes, I seek help for the problems my hyper self-awareness uncovers, when the solutions I find aren’t enough. But I often find there aren’t many other solutions out there. It’s a frustrating and discouraging experience to search and search for the end to a problem, only to find no end in sight.

Per usual the game of life is on “hard mode” for me and other neurodivergents.

All that being said… even though my hyper self-awareness often creates problems by overloading my brain with concerns, I do greatly appreciate it in other ways. I like that I understand myself more deeply than other people my age typically do. It makes me feel like for all the difficulties my AuDHD might cause me, at least I know myself better than most.

I already feel like a more authentic human.

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.

Traveling with AuDHD

By Kaïa

On March 24, 2023

In ADHD Info, Autism Info, Planning & Organization, Sensory Issues

As many of you know, I love to travel! In fact, I live to travel! If I could travel most of the year (and comfortably bring my cats along) I would.

But rather ironically, traveling goes against a lot of my neurodivergent needs. Traveling is unpredictable, it requires a lot of social energy, and it pushes my sensory sensitivities to the MAX. But somehow it is all worth it!

The following is a guide for other neurodivergents and their traveling companions. I hope these tools will help make traveling more accessible for all my neurodivergent friends out there!

Steps to take & general recommendations for traveling as (or with) a neurodivergent individual:

1. Plan out your trip in great detail!

I cannot stress this one enough.

For me this means planning out each day of my trip. I’m flexible though, and often don’t assign a specific day to the “day plans” I create. Or in other words, what am I doing tomorrow on my trip? Well, which one of the day plans I created makes the most sense for the weather tomorrow, my predicted energy level, and what I’m in the mood for?

Some neurodivergents take this detailed planning a step further and plan out their meals. Knowing exactly what they’ll be ordering and eating each day is comforting to them.

Plan out your trip in the amount of detail that makes you feel the most comfortable. It’s a vacation after all, and you deserve to enjoy it!

My partner and I plan our trips in a shared Google spreadsheet that we both dump ideas and other trip information into. Before an upcoming trip, I’ll use that accumulation of information to plan out the days of our trip.

2. Always have (at least) a vague back-up plan for your “day plan” in case something falls through. This will help curb your anxiety if plans change.

3. Bring noise-canceling headphones and/or Loop ear plugs (or regular ear plugs). Minimize sensory overload as much as you can!

4. Bring sunglasses – Again, take care of those sensory concerns.

5. Even if it means you have to bring a larger suitcase, don’t skimp on bringing what you need to feel comfortable. Of course, still do this within reason (unless you’re Hermione Granger and have an extension charm on your bag).

For me this means bringing things that help me sleep better. I have enough trouble sleeping as it is, let alone in a strange bed in a new place.

6. If you’re traveling with a friend you’ve never traveled with, don’t make your first trip together a big important expensive trip (oh la la). Try a local trip first to make sure your traveling styles mesh well together.

7. On that note, only travel with friends and family members who understand that you will need more structure in your travel itinerary.

Set yourself up for success! Make sure they understand that this structure exists to help you feel safe and in control of an unpredictable situation (traveling).

8. If possible, rely on a friend or family member to take photos for / of you.

My partner shares a lot of his photos with me in a shared Google Photos folder. Having access to his photos helps soothe my anxiety over having to remember to take my own photos.

Also, with a poor memory due to ADHD, photos are even more important to me because they help me remember what my brain will likely forget.

9. While on your trip, use the bathroom whenever you see a bathroom… even if you don’t have to go! Your ADHD brain will thank you later.

10. On that note, also drink water whenever you can! It’s hard enough to remember to drink water on a normal day with ADHD. Make sure you don’t become dehydrated while traveling.

11. While on your trip, be extra gentle with yourself! For me this means avoiding loud crowded places as much as possible since they are especially draining for me. I need that energy for the rest of my trip!

Information Recall & Memory with AuDHD

By Kaïa

On March 3, 2023

In ADHD Info, Autism Info, Social Anxiety

There has always been a wall in my mind. A mental wall of solid brick that flies up at the slightest sign of emotional discomfort.

This wall conceals from me the library of information I have accumulated in my 32 years. It tucks away recent and long ago memories. It hides from me what makes me interesting.

When this happens, my thoughts are abruptly shoved into the corner, and I’m left helplessly stuck in the present moment. My social anxiety rises. I try to push the wall open but it slides just out of reach.

It is always just out of reach.

What happens when someone asks me a question or tries to carry on a conversation? I’m often left banging on the wall, begging it to give me the information I so desperately need. I am left unable to effectively communicate with others. As I’ve gotten older, I’ve learned how to remain calm when the wall goes up because I’ve come to expect its presence.

The wall delays my ability to answer a question fully. I described it to a friend as me “needing to submit an information request”. The information is not currently available to me. It is somewhere tucked away in the vast network of my mind. But once the information request has been submitted, the paperwork approved and filed, the information will arrive. But it will likely be a long time after the question has been posed before this information arrives. So my answer to your question might be a bit late.

It’s like neurotypical minds can send information via text, and I’m stuck with snail mail.

So what’s going on here? A lot of social anxiety, a touch of executive dysfunction, and a good amount of “I don’t know”. As with other neurodivergent traits, there are unfortunately still a lot of question marks when it comes to understanding how our brains work differently.

Social anxiety throws up the wall as a sort of protective mechanism. Whereas, executive dysfunction makes it challenging for me organize my thoughts and recall information. ADHD is notorious for making you forgetful, and when you add social anxiety into the mix, you can also have difficulty forming lasting memories. Your mind ends up being too occupied with safely navigating the social cues of the present moment.

How do I try to get around having poor memory and a wall in my mind?

You might practice an important presentation you’re giving at work. Well, I practice basic conversations I plan to have. The more I practice, the more that information stays on my side of “the wall”.
I rely heavily on taking photos to fill in the holes of my poor memory. “
I keep a lot of different task-lists on my phone that I “brain dump” into, so as to not forget things I plan to do later and to help me better organize my thoughts.

All that being said, my ability to memorize (especially directions to destinations) is above average. I often only need to travel somewhere once before I have memorized how to get back there the next time. I can also memorize series of numbers and other random strings of information much more easily than I can form actual memories.

What I’d like you to take away from this is be mindful that you don’t confuse my silence for shyness. I often don’t have access to the things I’d like to tell you. Asking me questions can help me know what specific information to request access to. Also, if you share photos you’ve taken of me or of an adventure we’ve gone on together, I will love you forever. My poor memory is a great sense of anxiety for me and sharing photos helps me form lasting memories!

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 I hate going to parties

By Kaia

On November 16, 2022

In Autism Info, How You Can Help, Masking, Sensory Issues, Social Anxiety

Ok, I love parties if they’re for me.

But besides social anxiety being my strongest Autistic trait, parties are otherwise chock full of triggers for me.

Work parties, holiday parties, birthday parties, showers, weddings, you name it, if there are strangers present, I’m already uncomfortable… I nearly have a panic attack when I just need to ask a grocery store clerk “what aisle are bread crumbs in?”.

I recently recognized that when I attend a party, I turn into “self-absorbed Kaïa”. I find myself thinking how much “cooler” I am than those around me, and then instantly feel like a terrible person for having had this thought. I give off a “holier than thou” attitude and remain aloof from those I don’t know. I become distant and short tempered with my friends because ultimately I’m just SO stressed out. I turn into someone I don’t recognize, someone I don’t like.

I now understand that this is me mimicking “confident behavior” as I’ve seen in TV shows and movies. As someone with Autism, I lack the understanding of how to actually be confident. So I do the only thing I can think of, I become an actress. Somewhere along the way my subconscious identified this “self-aborbed Kaïa” to be a believable expression of confidence.

As much as I can separate myself from this behavior and tell you that I know there are much better (and kinder) ways to convey confidence, I could not tell you what that behavior looks like.

So by default, I continue to display the only “confident” behavior I can muster. This behavior serves as my armor to mask my fear of interacting with unfamiliar people.

Additionally, there are other triggers at parties for me. Here is a list of what I deal with:

Sensory issues: Loud or sudden sounds, people standing or sitting too close to me, bright lights, etc, are all too much for me. Normally, these things aren’t a big discomfort. But when you pair these sensory sensitivities with social anxiety, it adds up quickly.
Not knowing what to expect. Those of us with Autism often need to plan out our day so as to mentally prepare ourselves for what’s to come. But how do you prepare yourself for a party full of unknown events, spaces, foods, sounds, and people?
I have difficulty recalling information. Besides social anxiety, recalling information is one of my biggest Autistic struggles. People who know me may describe me as quiet. As evidenced by this blog, the truth is if I could only remember what I wanted to tell you, I would have so much to say! I can often get around this fairly well by practicing conversations I plan to have. But this is difficult when I’m going to a party and have no idea who I’ll meet, or what they’ll be interested in talking about.
Not being able to “stim” to release anxiety. I’ve only recently started flapping my hands when I’m upset or excited. I do find that it lets me release built up energy, and helps me feel better. But I don’t feel comfortable flapping my hands in front of anyone… Let alone a room full of people I don’t know. Fortunately, I do have some verbal stims, and with the pandemic, I can easily conceal those under a mask.
My ADHD makes me fidgety. Before I got my ADHD diagnosis, I could never understand how people could sit still for 30 minutes, let alone an hour or more. I am constantly playing with my hair, touching my face, scratching an imaginary itch, drinking a nearby beverage, or changing how I’m sitting. I’ll do anything just to be able to move! Not being able to move as much as I need to causes a build up of anxiety and frustration. I’m currently looking for things I can carry with me at all times and fidget with when needed.
Because I’m Autistic, I have a sensitive nervous system. A more unique sensory issue I deal with is chronic pain. Long story short, my doctor could never figure out why my back always hurt so much. After my Autism diagnosis, I had my answer. At parties it’s often hard for me to find a chair that doesn’t stab me in the back, or a couch that gives me enough back support. I’m often left pushing through a wall of pain on top of having to try to act like a normal functioning human.

So yeah, I hate going to (most) parties. They feel like an event that exists to remind me just how much I don’t fit in with “regular” people. Parties send me on an emotional rollercoaster of self-loathing, anger, and anxiety.

How can you make parties suck a little less for me?

Let me invite a friend who can be my “wing person”. This friend can open conversations for me, and provide me with other tools I need to feel more comfortable.
If you or someone at the party has a pet, bring me immediately to this pet. Animals are such a great comfort to me, and will instantly make me feel better.
If possible, help me find a less crowded, quieter space at the party to hang out in.
Help include me in conversations by asking me questions. Asking me questions will give me a designated chance to speak, and will also give me an idea of what to talk about.
Help me get food. When I am at big social event like this, I often enter a “fight or flight” state. In this state, food becomes a luxury, it becomes irrelevant. It feels like a monstrous task to locate the food, find allergy friendly options (I have food allergies), choose which foods I want, put them on a plate, and eat them without feeling like everyone is staring at me.
Stop asking me to sing or dance in public. I know my friends find this fear of mine irrational and amusing. They think if they just push me a little further, I’ll sing or dance, and see how fun it is. What they don’t realize is the unbridled terror that this request brings me. I hope my friends will soon recognize how cruel it actually is to ask me to do this. Just because I don’t dance or sing in public, doesn’t mean I have an inability to have fun. In fact, I enjoy singing and dancing… by myself.
Don’t expect me to stay long at the party. It takes a lot of energy and often literal pain for me to attend your party.

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.