Category: Autism Info

Why change can be so difficult for those with Autism

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.