My life with Autism & ADHD

Month: November 2022

Why I hate going to parties

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:

  1. 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.
  2. 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?
  3. 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.
  4. 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.
  5. 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.
  6. 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?

  1. 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.
  2. 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.
  3. If possible, help me find a less crowded, quieter space at the party to hang out in.
  4. 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.
  5. 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.
  6. 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.
  7. 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

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

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

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

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

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

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

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

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

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

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

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

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

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

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