Traveling as an Autistic Person in ED Recovery
It’s time to talk about VACATION! If you follow me on Instagram, you know I recently went on a trip to the east coast with my family. I flew in from my current home in San Francisco and they flew in from the family home in The Netherlands, so we literally met in the middle of each location! I hadn’t seen my family since I moved to California over 7 months ago, so as you can imagine, it was truly special getting to see them again. Nevertheless, the 2 weeks I spent on vacation with my family wasn’t all sunshine and rainbows. Traveling is stressful for anyone, but it is especially challenging for autistic individuals. If you add the struggles that come with disordered eating onto that, going on vacation can be more of a nightmare than a fun getaway!
But you deserve a fun getaway, which is why in this post, I’m going to give an extensive recap of my trip. I’m sharing how I prepared, challenges I faced, and everything else I learned so that YOU can use my experience as a tool to fully enjoy your next vacation! If you do take anything away from this post, please screenshot and share to your Instagram Stories, and be sure to tag me @livlabelfree! The only way my blog, podcast, and YouTube channel can grow is through you sharing it organically, and I believe the topics I share around autism, eating disorders, and overall mental health are too important to be kept from the rest of the world! So with that, let’s dive into all things vacation and traveling as an autistic person in eating disorder recovery!
The Trip Plan
I want to start this post by sharing the overall context of my family trip, because for me personally, I can only even begin to comprehend anything I learn when I have a clear sense of the context! First of all, who exactly did I travel with? I travelled with my mom, my two sisters, and the boyfriend of my middle sister. If you’re wondering about my dad, he didn’t come along because my parents are divorced and are certainly not on very good terms. Some of you may know I am currently writing a book, and family dynamics is definitely a huge concept that I weave throughout my story. But, I digress! Back to this story :)
So my mom, sisters, and the boyfriend arrived in New York around the same time I did, with 3 nights in New York being the first stop on the itinerary. From here, we’d be driving to New Jersey for 2 nights, Philadelphia for 3 nights, and then ending with Boston for 3 nights. My mom had booked Airbnb’s in all these places, which I will always recommend over hotels because not only is Airbnb cheaper, but you have way more space, and, of course, you have your own kitchen!
Packing Food for Your Stay
Speaking of kitchens, one very important way in which I prepared for this trip was packing lots of my staple foods. I did share what I was bringing on my Insta stories before I left, so be sure to follow me @livlabelfree for daily value and to get a behind-the-scenes look on my everyday life! As an Autistic person myself who has fully recovered from an eating disorder, I know like no one else that having access to certain foods is one of the most important parts of my daily routine and overall lifestyle.
This is also one of those parts of recovery that I believe is unique to autistic individuals, in that having very specific food preferences aka “safe” foods, can simply be an autistic trait and does not necessarily have to come from the eating disorder. Of course, this nuance can also make it difficult to know when a behavior is coming from the autism or coming from the eating disorder, and for this, my solution is always asking yourself what your intention is.
As humans, we either act from a place of love or a place of fear. In the case of bringing specific foods, I was acting from a place of love, because I know my body and what type of nourishment allows me to feel my best! Some of these items included Nuzest Protein Powder, Collagen Powder, oats, gluten-free flours and cacao powder (to make mug cakes!), nuts and nut butters, dark chocolate, and protein bars for quick snacks. These are all things I seriously cannot go a day without, so by packing them, I was also acting out of love for my bank account! I mean, I wasn’t about to spend money on buying things I literally already had fully stocked in my kitchen.
Now, if my intention behind packing these foods would be coming from a place of fear, so if I was packing them simply because I didn’t ever want to eat out with my family due to unknown calories or whatever, that would most likely be coming from the eating disorder. So again, in order to determine whether your action is coming from the autism or the eating disorder, ask yourself what your intention is. This is a huge part of the work I do in 1:1 Coaching with my clients as well, so click here if you are interested in learning more about working with me!
Packing Food for Your Flight
Now that I’ve shared a bit about packing food for your stay, let’s talk about what to pack for your flight! Not only did I pack lots of staple ingredients in my suitcase for the actual duration of the trip, but I also made sure to bring a fully loaded lunchbox for my travel days. And when I say fully loaded, I mean multiple meals and an amount of snacks I knew would be more than I could even finish!
I don’t know about you, but any kind of travel that involves airports or planes gives me SO much anxiety. There’s so much unpredictability, from how long you’re going to have to wait to go through security, whether or not they’re going to check your bag, how long of a walk it is to your gate, the list goes on. These are all aspects of travelling you CANNOT control. So how can you ease some of the anxiety or worry? The key is to shift your focus to the things you CAN control.
One of the most anxiety-provoking situations for me is when I don’t know how much or what kind of food I can expect. Eating regularly is an incredibly important part of managing my energy levels, which is why packing an abundance of food gives me that well-needed trust that I’ll have enough nourishment. This reminds me of a quote I mentioned in a previous post about anxiety, and that is: the opposite of anxiety isn’t calm, it’s trust!
Organizing your Packing List
Now that we are on the topic of packing items that allow you to feel your best, let’s talk about your packing list! I actually love making my packing list, because in essence, it’s making a plan, and I have yet to meet an autistic person who does not like to plan! My best tip when it comes to writing out your packing list is to start way ahead of time. This is a HUGE difference between me and my family, in that I always plan and prepare everything in advance, while they often leave everything until the last minute. I guess I’m kind of foreshadowing how this difference played out as a challenge during the actual trip, so keep on reading for some intense stories :)
Anyways, preparing your packing list in advance gives you the time and space to think about what you will need to bring without the stress that comes with time pressure. As I go about my day-to-day life after I’ve created my list about a week ahead of time, I often become aware of specific items I need to add to the list. A super random example of such an item for this trip was my milk frother that I use to blend protein powder or collagen into my coffee. I hadn’t initially put it on my list, and only remembered I wanted to bring it when I pulled it out of my kitchen drawer the next morning!
Something else that works really well for me when it comes to creating my packing list, is to divide it into sections. I’m not going to dive too deep into my specific sections because how you organize your list is obviously going to differ based on your preferences, but one section that I believe is very helpful specifically for autistic people, is a section with “comfort items”.
Every autistic person has things that make them feel better, whether this be stuffed animals, fidget toys, noise-cancelling headphones, or a weighted blanket. When creating your packing list, write down the items that you know help calm you down in times of overwhelm, then be sure to pack them in your carry-on luggage so you can use them in the plane if necessary! Personally, I always bring earplugs, an extra set of comfortable clothing for if the plane is too hot or too cold (hello hypersensitivity to temperature!), and lots of activities to distract me from the uncomfortable restless feeling I get from sitting in an airplane for six hours (hello ADHD!)!
If you’ve made it this far, I’m sure you can tell I spent quite an extensive amount of time and energy planning and preparing for this trip! Despite being very excited to see my family and take a break from my busy routine back home, I knew this vacation was also going to be a challenge. Right now, I’m going to pull back the curtain and share some of the obstacles and hardships I didn’t foresee, and how I was able to come out stronger because of them.
The very first challenge that I encountered almost immediately was how uncomfortable I felt sharing a small space with four other people. For the past 2 years, I’ve been working my a$$ off in order to afford my own apartment. I have always been someone who needs to be alone in order to recharge, and I simply CANNOT focus or work when I hear even the slightest amount of background noise. As you can imagine, there’s a LOT more than just background noise when you’re propped in a tiny New York apartment with an indecisive mother, a teenage younger sister, and another sister who’s madly in love with her boyfriend!
I constantly felt overstimulated by the chaos of ongoing conversation, causing a claustrophobic feeling as it was paired with having no place to retreat to. Something that did help me during these moments, and I actually filmed some Instagram stories on the first day of my trip sharing this, was going outside to take a short walk.
Being outside in the fresh air, focusing on my breath, and listening to a podcast or audiobook takes me out of my sympathetic nervous system (which controls your fight-flight-freeze response), and into your parasympathetic nervous system (also known as rest and digest mode). Knowing how to switch into your parasympathetic nervous system is especially important if you are in eating disorder recovery, as it reduces the anxiety and digestive issues that often come with mealtimes.
Unpredictability and change
Another obstacle that I encountered on this trip was the ongoing unpredictability and change. As I mentioned a little earlier, a certain extent of unpredictability is inevitable when traveling. If you’re not in your own home with your own routine, there WILL be things that are going to be different! However, you can request and gather specific information beforehand to mentally prepare for what’s to come. For me, that meant knowing the exact itinerary of the trip and taking time to look at the pictures of each Airbnb.
Because my mom is a single mom and I’m very much still building my business as an entrepreneur, we obviously didn’t have a massive budget to spend on housing arrangements. The last two Airbnb’s only had 2 bedrooms, meaning one person would have to sleep on the couch in both Philadelphia and Boston. Now, I know myself VERY well and know that I always need the option of a private space to retreat to when I feel overstimulated. I had clearly communicated with my mom beforehand that I would need my own bedroom in every city, and this was honestly an ultimatum I had for agreeing to this trip in the first place.
From an outsider’s perspective, this can come across as demanding and egotistical, but I’ve said this before, and I’ll say it again: you do NOT need to apologize for your needs as a neurodivergent individual. Learning to set clear boundaries to protect my mental health has been one of the most important parts of my personal growth journey, and you’re really helping EVERYONE by doing so! It’s the whole idea of putting on your own oxygen mask before helping someone else that they give in the airplane; you can only properly show up to the world if you prioritize your own needs first!
So, in knowing what I needed and explaining why, my mom and I had agreed that I would always be having my own bedroom. But here’s where plans drastically changed, which brings me to my third big challenge: gaslighting.
For those of you who aren’t familiar with this term, gaslighting means dismissing or invalidating someone’s experience, causing them to question their feelings or thoughts. A very common way in which autistic people experience gaslighting is when they are told to “just act normal”, implying that being autistic is some kind of choice. Gaslighting is much more common when it comes to invisible disabilities or invisible illnesses; I mean, no one will tell someone who’s paralyzed and in a wheelchair to “just get up and walk”! I know this sounds awful, but when I was struggling with an eating disorder, I often wished I had cancer instead, just so people would validate my illness instead of telling me to “just eat”.
During my recent trip, I experienced a lot of gaslighting from my family members. I know they love me and would never intentionally want to hurt my feelings, but that doesn’t take away from the fact that I often felt lonely and misunderstood during our precious time together. In the case of the room arrangements, my experience with gaslighting was especially frustrating because of the plans my mom and I had made in advance.
Like I said, for the last two destinations of our trip we would be staying in Airbnb’s that only had 2 bedrooms, and a foldout couch in the main room. My sister and her boyfriend would obviously be together, my mom and my youngest sister would be together, and I would be sleeping alone in a bedroom like my mom and I had agreed upon! However, when we arrived in Philadelphia, the first Airbnb with this only-2-bedroom arrangement, the debates started. I’m going to spare you the details of what was literally a 3-hour long discussion of me trying to defend and explain myself, but in short, everyone said that I should sleep in the couch because I was “sleeping alone anyways”.
Every time I reminded the others that my mom and I had already agreed on me having a room due to needing space, I was met with phrases that implied I should just suck it up and deal with it. Not only did this feel incredibly invalidating, but it was additionally exhausting because they were changing the plans on me. The whole bedroom conversation limbo repeated itself in the final Airbnb, which honestly just left me feeling completely drained and ready to leave by the end of the vacation.
Not surprisingly, the constant switching of plans and last-minute decisions resulted in many meltdowns that I truly believe could have been avoided had I not be gaslighted. It really saddens me to say all this, but I always want to be super open and transparent with you, which is why I am choosing to share this!
Again, I am by no means saying that my family was purposefully trying to discount my autistic experience, but the reality of living with this disability is that non-autistic family members often WILL NOT understand. So, if you’re feeling alone - like you’re some kind of alien in your own family - I want you to know you’re really not! I still often feel like I don’t belong, even though I rationally KNOW my family loves me very much and I love them!
That feeling of love is how I want to bring this post full circle. I unfortunately don’t have a simple solution for gaslighting because it is something fully out of your control, but I believe knowing YOUR truth and OWNING that truth with a full heart is the key to staying sane. No matter what people say about how you “should” act or who you “should” be, at the end of the day, your truth is the only one that matters!
There were several times when I didn’t join my family in their activities, and I either stayed back in the apartment or explored the city by myself. Just like my walks helped me calm down when I felt overstimulated, giving myself permission to be by myself and travel at my own pace helped me remember how grateful I am to have a family that I can hug and kiss and love! Families are a messy thing, but in the end, family is the most important thing there is.
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