- Neurodivergent Kaïa - - My life with Autism & ADHD

What is Rejection Sensitive Dysphoria?

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 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.

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.