Inside the autistic experience
"If a person’s behavior doesn’t make sense to you, it is because you are missing a part of their context." Devon Price (source)
Autism is an invisible disability, so it can be hard for neurotypical people to understand our experience. I want to give you a glimpse of my own experience, a look behind the curtain of external perception so we can dive in and see the hidden part of the iceberg. As the facilitator of an autistic support group, I’ve met many autistic people and this continues to shape my understanding of the autistic experience. But this is my personal experience, as of course, every autistic person is different (the autism spectrum is not what you think).
My life revolves around knowing my limits and avoiding the worst pain. My goal every day is to avoid meltdowns and shutdowns, which are extreme uncontrolled states that can be brought on by any kind of overwhelming environment or event, usually triggered by a last drop effect. Having spent so much time undiagnosed, I have long learned that as a woman in this society meltdowns have huge consequences, so a lot of the pain and anger turned inwards, making shutdowns my primary expression of overwhelm. I still have meltdowns, as we don’t really control if the reaction will be turned inwards or outwards, but I feel like, even if unconsciously, gender expectations and social consequences play a role.
In the moments leading to a shutdown, I feel like slow motion is setting down, I can only give monosyllabic answers, and it's like battery saving mode is kicking in. Once the shutdown is there, I'm a spectator of my own life, often unable to speak or move. I have thoughts but I can't make words to express them. My partner of 11 years knows me so well he can often tell when I'm nearing a shutdown or full on into one. I just nod when he asks “you can't speak, can you?” and we both wait patiently for it to pass, or more often, for me to go to bed.
My long term goal is to avoid autistic burnout, which has similarities with regular burnout but is a different affliction. It can be caused by work but also by anything else in our life. Autistic burnout kind of follows us our whole lives and most of us have gone through it several times. I’ve had to quit jobs without having anything lined up because of it, because I couldn’t go on at all, even though my job wasn’t the trigger of that autistic burnout. As an adult it also feels very distressing because we lose skills we have always had, and suddenly we’re not able to handle a conversation like we used to, or go grocery shopping. It’s like I’m stuck in a 5% battery cycle, it can never stay charged more because it all goes away too fast.
A day in the life
All this means my focus is always on conserving energy and making choices. Everything I do and feel counts in the balance, even the smallest thing most people never think twice about like being in a certain place or getting dressed.
It's hard because you have to give up things you like to do, things that would even recharge you under other circumstances but you know you'll pay a hefty price if you keep pushing. Growing up I never understood why I could never keep up with any after school activity, even when I liked it a lot, I would find myself in what I now know was a shutdown state, unable to move or speak. To this day it's still impossible for me to have a weekly activity, I know it's not sustainable.
I often feel I have more in common with the residents at the retirement home next door than with people my age. Like me they have to make choices because their energy and resources are finite. Like me they also have to know their limit or pay the consequences. After two hours playing tile rummy with them I have thoroughly enjoyed myself but I am deeply drained. The harsh fluorescent lights of the room eat up most of my resources and the social interactions will take anything that remains.
By now I've learned that this is when I need food, rest, and limited to no interaction if I don't want to end up in shutdown, unable to speak or move for hours. I have a team of professionals around me that can vary over time but you can bet I'm seeing many of them at any given time. I have an amazing therapist who helps me navigate life and find strategies to avoid over extending myself. I work with a naturopath to help with my sleep issues (which unfortunately go hand in hand with autism), a cranio sacral therapist who helps my nervous system regulate and lately I've been seeing a somatic therapist as well. I couldn’t do any of this without the private extended health benefits I get with my job so I feel extremely lucky to be able to see all these professionals. I wish this was accessible everywhere and to everyone (those extended health benefits didn't exist when I lived in France, it was all out of pocket) because for disabled people, healthcare has to go beyond the physical model we currently have. To have a fighting chance in this world we need help navigating it.
All these appointments, as helpful as they are, are also a time and energy commitment that I have to factor in. Just going somewhere physically means I have to be there early (I have trouble with the concept of time so I'm crazy early to everything), find a place to work from until then, and make sure I'm not too hungry on top of it all. With the help of all these professionals over the years, I've developed strategies, like putting strict limits to how many appointments and outings I can have each week. It's all a trade off, if I want to do this on Saturday, I have to make sure I have the entire Sunday to rest. If I go see a show on a Friday night, I can't do much on the Saturday. I pretty much never go to certain events like weddings because I know those cost a hefty energy price. I went to a wedding a few years ago and it took two whole days of shutdown crashing on the couch barely moving to recover. I sometimes like to go to the mall and shop around, but I always have to remind myself that this will be very taxing. So when I go, I make sure the whole day after that is free for rest, and I go right at the time it opens, to have more space and less noise. Sound is far from my biggest sensory issue but combined with other sensory stimuli, it can be really painful. Even with all those precautions, I will find myself very tired within 10min so I will need to have long breaks, if possible in a corner with natural light. And it's not uncommon for me to get a shutdown anyway after going to the mall, no matter how much I plan or take breaks.
Sleep also plays a huge role in my capacity to handle my day, and it often feels like I'm building a card castle, one bad night, one too demanding event and it all crumbles down. I regularly wake up at 3am, my brain fully on, incapable of getting back to sleep. Navigating a full time job can be especially hard because of this.
It's all about the senses
Autistic people perceive sensory input very differently. Our senses can be over or under sensitive (more information here). Many of us have horror stories of clothes our parents made us wear that made our skin crawl, of being forced to eat something that felt horrible to us, or running away when the vaccum cleaner was out. We usually have laundry lists of things we are over or under sensitive to. The one thing we all have in common is that these sensory issues affect our entire lives. Our kryptonite varies but we often have at least one hypersensitive sense that will make the world a minefield.
I recently watched the Korean drama Extraordinary Attorney Woo and even though I rolled my eyes at yet another genius autistic with a photographic memory portrayed in media, I really enjoyed the show and the many parts they got right about being autistic. They make it clear that sensory issues are always following her, you see her wearing headphones a lot, being distressed by noise and eating only gimbap and nothing else for every meal.
Sensory issues are for me at the core of autism. Which is contrary to the way the medical community has been thinking about autism. But I am certain this is because the medical approach has almost only been about how we appear to neurotypicals, not about how we actually feel. This is reflective of the general view of disability (especially invisible ones) as defined by the traits of a person that make them “inconvenient” for neurotypical people and society. So yes if you look at the tip of the iceberg you’ll get a very different picture. But if you ask us about the entire experience, suddenly you realize what it’s actually like to be autistic. More research is being conducted this way now, and I am a consultant on one such multi year study that explores autistic meltdowns, shutdowns, inertia and burnout (the first paper can be found here).
My two biggest sensory issues, that affect my entire life and my day to day are lights and taste. I have to plan for these two factors every time and every where. I wear glasses made for autistic light sensitivity, and they help reduce the burden of artificial light. But I know simply being in a place with any kind of artificial light will deplete my resources, and if those are fluorescent lights, like the kind you find in grocery stores, I will be drained very fast. One way to understand what that's like is to recall, if you can, a time you were hungover. You were probably bothered by all kinds of sensory input like bright lights and loud noises. For us this is not only our every day state, but I'd say you can multiply that feeling by at least 10 to get to the way we experience the world. At home, I never turn on built in lights, I use dimmable bulbs and have orchestrated different level that turn on at different times, from extra dimmed to slightly less dimmed. When I worked in an office it was especially hard to sit all day under artificial light and I had more frequent meltdowns and shutdowns because of it, and because of the high levels of daily socialization an office entailed. My light issues also tie into my sleep issues, so I have to be careful not to go in any place too brightly lit hours before bedtime, or my already low melatonin producing brain will not let me fall asleep at all. And if I don't sleep enough, I'm even more sensitive to light and more likely to have shutdowns. What a fun cycle.
Taste is a also a sensory issue that follows me everywhere. I have a Todoist board where I write every dish from every place I’ve ever tried so I can know later if it’s “safe” for me or not. I’ve lost count of how many times I couldn’t eat the dish I had ordered or would try to push through and eat only to experience pain and despair. I felt so validated when I read that “research shows that autistic people often experience physical discomfort and anxiety as a result of sensory processing issues” (source). Because it’s not like disliking certain food, it’s actual physical pain I feel.
Many fancy restaurants end up on my no no list because of this. I like to describe this sensory issue as having the taste of a toddler. People usually get that it means I prefer bland food that doesn't have strong flavours. Anything bitter, sour, spicy, and more will taste 1000 times stronger to me. It makes many staples like coffee off limits, and I've always wished I liked coffee because I love the idea of it, but it tastes horrible to me in every combination. The same goes for alcohol, although I don't mind that at all.
I was talking to an autistic friend of mine who has similar food perception, but reversed, and we were thinking that while we feel very sad, frustrated and sometimes distressed when the food we're eating hurts us or is deeply unsatisfying, we also feel intense joy when eating food we like.
The joy
You can only know about the great joy we experience by listening to us. When we drive deep into our special interests for example, the joy and satisfaction we feel is incredible. The kdrama Extraordinary Attorney Woo was good at showing that, the main character having an intense special interest in whales and cetaceans. Most of us don't have just one and they can change in the course of our lives. Victorian era England is one of my current ones, and I feel utterly fulfilled spending hours researching it and filling my head with facts and observations. I will often be looking at costumes on a show, trying to guess the decade, and it brings me intense pride and joy when I am right. TV shows have been a lifelong special interest and they overlap perfectly with my Victorian era interest, which leads to intense joy.
I care deeply about people and connecting with other humans is also a great source of joy for me, even if I always have to be careful to avoid shutdowns and burnout. Small talk is a concept that makes no sense to me, I'd much rather share my deepest thoughts with a total stranger, that's what I call being alive. I also get overwhelmed with emotions, which is not always easy to navigate. For example, hearing live music with people around me will often make me cry. Try being in tears listening to the Saturday band playing at the grocery store, and see what people might think without the context I just provided.
Being autistic has a lot of really cool sides for me. I personally am spared lots of cognitive biases and never feel the need to compare myself to anyone for example. Not having social media is a blessing to me, when I had an account years ago it made me miserable and constantly stressed. I feel very lucky to have high trust in my instincts and the decisions I make, small or big, I never live with regrets. Because I'm already navigating society in a non-normative way and never fit “the mould”, it’s a lot more natural for me to prioritize doing what makes me happy. Before my diagnosis I constantly worried about not fitting in, as I thought I was just wrong. But having a whole new key to understand myself and finding a community helped me become more self compassionate and now I don’t feel worried about not fitting into the narrow definition of what it means to be “normal”.
I also have this unique ability to make huge changes in my life in a split second and commit to it. I decide it and never look back. This is a joy I cherish because I know many people struggle with regret and perfectionist tendencies that our messed up society creates.
So all in all being autistic for me is having very different perspective on many things, and a very different inner experience. The things we have to pay attention to are rarely things neurotypicals will think twice about. The one thing I'd like neurotypicals reading this to take away is the iceberg image when they see autistic people. Remember we have this whole complexity that is invisible to the outside but very much affecting our lives. So if you ask us about our current sensory environment for example, you will be validating our inner experience and helping lighten the sensory load.
