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Backpacking with a Neurodivergent Brain
The Wake-Up Call
Two years ago I hiked almost 800 miles on the Pacific Crest Trail. When I got home and had to reintegrate into society, I found myself struggling greatly with the adjustment. This isn’t a new phenomenon for long-distance backpackers by any means, but it made me think about how existing in today’s society has always felt hard for me. I always wrote this off as a personal flaw, a sign of weakness. I thought I just had to toughen up and try harder and I’d be able to transform into a ~real person~.
My last day on the PCT, heading up Kearsarge Pass
I thought this way my entire adult life until I found TikTok. I know, I know. Just hear me out! For the first time, I was hearing stories from people outside my social circle. Think about it: most other major social media platforms show you content that you choose to see for the most part. For me, TikTok was the first place where I regularly saw perspectives from people I don’t know. I quickly ended up on the mental health side, and realized how I felt was not normal! So I sought professional help.
The diagnostic journey started with my primary care doctor, who had me fill out an assessment that consisted of one piece of paper, front and back. I scored extremely high for ADHD (Attention Deficit/Hyperactivity Disorder). He provided a referral to a counselor to verify his findings, and she did. This diagnosis was extremely validating, but I felt like it didn’t cover everything. There were some symptoms that didn’t fit into the ADHD diagnosis and others that contradicted it.
29th birthday camping trip, just a few weeks after receiving my ADHD diagnosis
Autism: perception vs. reality
We’ve all heard of Autism and Asperger Syndrome (which has since been removed from the DSM and now falls under the umbrella of “Autism Spectrum Disorder”). But these days most people still picture folks with higher support needs when they think of autism. This is how autistic people are depicted in TV shows and dramatic ads where autism is portrayed as a terrible and life-ruining disease that needs to be cured.
Just in the past decade, our view of ASD has changed significantly. For the first time, AFAB people and members of marginalized communities are being included in research and diagnostic measures. It’s not just young white AMAB people being studied and diagnosed now! Just last year a text revision of the DSM-5 was released that includes specific diagnostic criteria for AFAB people that had been overlooked for decades.
In my case, I took a handful of online assessments, many of which are the standard for professional diagnostic testing. Even though each one I took indicated a high likelihood of being autistic, I still gaslit myself into believing everything I was experiencing was normal. Until I had the opportunity to get a clinical diagnosis that is. My psychologist diagnosed me with ASD level 1 (a clinical box she was required to put me in for charting purposes) which means I am on the lower support needs end of the spectrum. But what does this all mean?
Different, Not Less
I want to make one thing very clear. Autism is a neurotype, not a disease. It is labeled as a disability because this specific neurotype does not always fare well in the society we live in today, but there is no treatment and it cannot be “cured.” And I wouldn’t want it to be anyways! “Neurotype” just means the way a brain functions. My brain is simply wired differently from other people who are not autistic. My entire personality and ways of thinking are influenced by my autism because my whole brain is influenced by my autism! It’s not better or worse than any other brain type, though coping with the way my brain handles certain things does require some extra energy and attention sometimes.
With my light sensitivity, sunglasses are a must. So when my sunglasses broke in the Sierra Nevada, I had to fix them and leukotape saved the day!!
One characteristic of the autistic brain is that we tend to fixate on things. This can happen over the period of a week or a decade, but if there’s something we are genuinely interested in, we tend to latch onto that thing. For me, one of my special interests that I fixate on is backpacking! Which brings us to: how does having a neurodivergent brain affect the experience of backpacking? So glad you asked, let’s get into it!
Backpacking with Autism
First of all, a lot of this is going to be a reiteration of things I talked about on my Backpacker Radio episode, but if you haven’t listened yet here’s the gist: backpacking is equally amazing and difficult for the autistic brain! Several aspects of my sensory perception and nervous system regulation cause me to experience backpacking differently than people with neurotypical brains, for better or for worse.
Backpacking in Indian Peaks Wilderness just a few weeks before I received my autism diagnosis
As I was writing this, I realized my autism basically affects every aspect of my backpacking experience, from sleeping to socializing and everything in between. To keep myself from writing a whole essay, I’ll just highlight some of the more impactful parts of backpacking with a neurodivergent brain.
One major aspect that affects the backpacking experience for me is my sensory issues around certain textures. Sensations such as feeling sticky and feeling like my clothes or quilt are too tight, while uncomfortable for most people no doubt, will inhibit my ability to regulate my emotions. I will get irrationally upset if I feel these uncomfortable sensations for any extended period of time. It has taken me years of adjusting and readjusting to find systems to mitigate these hypersensitivities on trail.
A well-known trait commonly observed in autistic people is difficulty navigating social situations. This struggle is mitigated on trail due to the nature of interactions between hikers. However, I still find myself overanalyzing and overthinking the interactions I have with people. This is hard to turn off and gets in the way of connection sometimes because I am afraid to approach people. However, I have found social interactions on trail happen way more organically and genuinely than interactions I have with people in the “real world.”
Me and Scoutmaster, who I met on trail and hiked with almost every day, approaching Kennedy Meadows south.
There are certainly many ways backpacking is great for autistic people! First of all, we LOVE a routine. Once I get into my daily routine while backpacking, I experience a significant amount of comfort in knowing what to expect most days. Also, the backcountry is quiet! No electricity sounds buzzing in my ears, no cars driving past constantly, no crowds or loud music. And for me personally, because backpacking is my special interest, it is an activity that brings out my authentic self. My autism allows me to feel a deep and profound sense of joy and utter elation when I’m in the backcountry.
Backpacking with ADHD
Backpacking is an amazing activity for ADHD brains! There is constant new stimulation and tons of opportunities for dopamine to be released. Also, research shows that exercise is great for ADHD brains and can help mitigate some symptoms. This works out well for us ADHD backpackers because hiking every day is great exercise!
One way I struggle with my ADHD in the backcountry is the noise in my head. Constant racing thoughts, random quotes, and clips of songs playing on repeat. I have tried many tactics in the past to quiet my mind and so far none have worked. It gets frustrating sometimes! I just want to listen to nature but instead, I have one singular line from “Albuquerque ” by Weird Al Yankovic playing loudly in my brain. To combat this I listen to music, audiobooks, or podcasts. I’d rather choose what I hear than have to suffer whatever random sound my brain latched onto in that moment.
I was really into Not Another D&D Podcast during my first attempt on the CT NOBO in 2020
Impulsivity is also an important topic of discussion when it comes to ADHD and the backcountry. Some studies have shown a 5-13 year decrease in the average lifespan of adults with ADHD. This comes in part from impulsive actions such as reckless driving or poor risk assessment. There are other factors here, such as alcohol/tobacco abuse, but I think it is important to highlight the impulsivity piece so we can be more aware of it in ourselves and make sure we properly assess risks in the backcountry.
Overall, neurodivergent brains seem to thrive while backpacking. There may be some difficulty managing sensory input and emotional regulation, but being in nature has a powerful effect on all kinds of neurotypes. We may need to make some adjustments for our comfort, but the struggles we face are not insurmountable barriers. With some trial and error and a whole lot of self-reflection, we can achieve great things! Subscribe to follow along my journey as I attempt to overcome my own personal obstacles and achieve my goal of thru-hiking the Colorado Trail!
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Comments 21
Mackenzie: I’m a long time long distance backpacker, my son & I have both thru hiked the AT. His son, my grandson is a beautiful little 9 y/o who is exactly as you described yourself. In fact, he was just diagnosed about a month ago as being on the Autism Spectrum, which lead to both relief and some anxiety. Reading your story, the similarities are so obvious. I’m so glad you recognized and learned all of this about yourself. The fact that you love backpacking makes you special. Our family is being prepared to handle Charlie’s autism and your story is very encouraging. Thank you.
I am so glad your grandson got diagnosed and can now get the support he needs! I’m sure with relatives like you he’ll learn to love the outdoors too! Happy trails!! 🙂
You write very well. I feel I have learned a lot from you just now.
My daughter is a software engineer. She says some of the best programmers she works with are autistic because they will stick with a problem until they solve it.
Are there others in your family who are neurodivergent or are you the first? If you are the first, do you know how many vaccinations you had as a child?
Thank you so much to taking the time to read! I agree, autistic brains are capable of incredible things. I am not the first neurodivergent person in my family and I’m sure I won’t be the last! However, many family members who display similar traits as me have not received a formal diagnosis, partly because research has come so far in my lifetime alone, also diagnostic assessments are $1,000 on the low end! Part of that research was debunking the harmful rumor spread by one scientist who incorrectly linked autism with vaccinations. There is no correlation at all! Autism develops in utero, not postpartum!
Thank you for clarifying that. I have been wondering if the rise in autism rates has been due to more diagnoses or more childhood vaccinations.
Absolutely thanks for your open mind! The diagnostic criteria has changed so much in just the last couple of decade it’s pretty incredible! That plus an exponential rise in sharing of information during that same time period has predictably led to more diagnoses. Such an interesting time to be alive!
I can relate to what you say, having spent much of my life being a ‘square peg’ trying to fit into round holes. Many of us are, to various degrees, ‘odd’ in some ways and should realize this and adapt our lives as much as possible to the way that we are.
I agree!! Instead of trying to be something we are not, it’s much better to embrace our true selves and do what we need to do for ourselves to live our best lives!!
Hi Mac, thank you for your post…my great niece was diagnosed as neurodivergent when she was little, and I suspect our families are both full of undiagnosed versions. Luckily she is getting lots of help and is a wonderful artistic and creative girl! I’m so glad people are getting more help with their needs these days!
Thanks so much for reading! I share that same sentiment. I love seeing so many people getting help and living the best versions of themselves! It’s inspiring, and trend that I hope continues 🙂
Mac,
I’m on trail this year finishing up my triple. Listening to your podcast with Badger and Chaunce pushed me towards seeking an ADHD assessment. I started treatment earlier this year, and holy crap, it’s night and day. I’m able to concentrate, it’s like I turned the volume in my head down from 10 to 2.
Happy trails and thanks for sharing!
Woooo so glad you’re getting the support you need!! I am the same way with my meds, I’m just like, wow these actually help so weird and cool 😅
Loved the article. I am on the spectrum and plan on a thru hike of the AT in 2024 with my daughter who is autistic. Adding to our challenges are we are both vegan. I think a lot about the idea of replacing my routines with new ones. For me… maybe the hardest thing, is letting go of needing to know what will happen, I overplan everything. For my daughter, the sensory things (being hot is a big one) will be a major challenge.
So glad you enjoyed it, and that is such exciting news about the AT!! I totally understand the desire to find new routines and new things that work for my specific needs. It is challenging but worthwhile! Best of luck to you and your daughter. And remember to be patient with yourself and give yourself grace 💗
Hi, Mac! I listened to your BPR episode earlier this year, and it was a bit of a catalyst for my continued journey of self-exploration and potentially self-diagnosis of ADHD and autism that started in 2021. I am about 99% sure I’m affected by both based on the research I’ve done and the assessments I’ve taken online. There’s just too much between specific language and stories that resonate deeply and help me understand my own perspectives and experiences, in ways I hadn’t realized but that definitively make sense. I appreciate your openness and willingness to be vulnerable as your share your story, and it has both helped and inspired me to live my truth more authentically, even as I simply begin to relate to myself in new ways and share with others. Reading Unmasking Autism by Devon Price was instrumental and a huge turning point in personal discovery for me, and that suggestion came right from you on BPR. Thank you from the bottom of my heart, and I look forward to following your journey further 😀
Oh my goodness this made me tear up!! My entire goal in sharing my story was to encourage people to do exactly what you have done. So proud of you for listening to yourself and embracing the beautiful person that you are! Cheers to our continued journeys 💗
Hi Mac, Thank You for a great piece! I love reading about other people in our tribe. Everything you said was spot on. Along with meds we should be given script for outside time. Like a few that wrote here it is the only time I can really feel my brain relax. For anyone who wants to read up on ADHD I highly recomend Dr Ned Hallowell and his great books. Driven to Distraction, Answers to Distraction and his new one ADHD 2.0. He also has ADHD and he dosent belive that we should change who we are to”fit in”.
Thank You and Good Hike
Cindy
Thank you so much for sharing your story and to the trek for putting it out there – I was diagnosed just after my 60th birthday 5 months ago. It is a wildly different experience
to be diagnosed as a child (very tough hearing about your future) I assume being diagnosed as a young lady and then a guy who lived his whole sad life in ignorance – I’m gonna take that back as I hear my lovely wife of 30 years in the other room. But there were tough times. As it turned out my mother also suffered mightily and NEVER knew. she and I struggled to say the least. In the end I now have ALL the answers to the why questions….ALL of them fit neatly into the known slots. Coupled with CPTSD (mom) I’ve been a ticking timebomb my whole life. No Mas. It’s a life sentence but one that is a walk in the park compared to waiting to feel like a normal grownup your whole life.
All of it only made sense as I compared it to backpacking – I was able to see my actions and reactions that I used to blame on altitude…just bad decisions. My evolution to ultra light which I thought was because I was old, turned out to be the absolute perfect adhd kit. I needed simple simple simple with maximum retrievability. Its such a great thing to obsess about. not without challenges but theres no fight I can’t win if I understand my enemy.
I think our backpacking styles and gear mirror whats going on inside…thanks again for bringing it up if for no other reason than to let an adhd’er know that some extra steps should be taken to make sure they enjoy their trip fully – those steps could be a good post.
Cheers all.