Reflections on being diagnosed as an adult
By Erin Human
It’s been over a year and a half now since I first began to realize I was autistic, and what originally kicked off that process of self-discovery was that the demands of ordinary life were beginning to outstrip my personal resources, and I needed to know why. I’ve since heard this described by autistic people in different ways, from “rolling burnout,” to “my workarounds were no longer working,” to Cynthia Kim’s phrase “playing life in hard mode.” I myself often described myself as being in survival mode on a daily basis, and my therapist once said that I needed to get “out of the basement level of functioning.”
When I sought a diagnosis in spring of 2015, there was some magical thinking involved in my expectations for psychological diagnosis and therapy. My goal was to go from being a flailing, falling-apart passing-as-neurotypical person to a thriving autistic person, which I still think is an excellent goal. However, it doesn’t happen by magic and as it turns out my psychotherapist was not the Blue Fairy.
It’s been a gradual, trial-and-error filled journey, but I’m finally getting to a place where I know what kind of supports I need in order to thrive, and can access them. By no means should anyone assume that what works for me will work for them, which I’m sure my readers already understand. But here are some of the supports that have been integral to my ability to cope with ordinary life without feeling like I am overdrawing my energy bank every single day. These things have gotten me out of survival mode and made me feel more like myself again.
Noise cancelling headphones.
The particular pair that I own are Bose QuietComfort 15 (I asked around and was told by a few people that the older 15s are a bit better than the new 25s). This was one of the first things I did for myself after getting diagnosed with autism: I stalked eBay until I found the make and model I wanted for a good price. They are expensive, but if you are noise sensitive and can afford to splurge or save up for them, they are well worth the cost ($250-300 on Amazon, I got mine for under $200 on eBay). Bose QC are high quality, comfortable, and are wireless when you use the noise cancelling feature only (that runs on a AAA battery). If you want to listen to music with these you have to use a headphones cord. Bose does also make a Bluetooth enabled pair so you can listen to music wirelessly – those are called SoundLink ($250-280 on Amazon).
Lately I have not needed noise protection quite as much, but for a while I wore my headphones every day, and on low-spoon days (when I didn’t get enough sleep and/or was recovering from a social event) sometimes I wore them all day long. You can still hear people talking at average volume in a room with you, so I could hear my kids and husband and do everything I needed to do – but they dampen really loud and/or high pitched sounds, and also ambient sounds like the refrigerator running, iPads playing cartoons, and so on. I didn’t even realize how much that kind of background noise was zapping my energy until it was gone. The downside of these, besides the cost, is that while they are super comfy by themselves, I have trouble wearing them at the same time as my reading glasses. So people who wear glasses all the time may have some issues with fit. Also, they are (obviously) conspicuous, and I can tell you from experience that if you wear them out in public people WILL stare.
Noise cancelling ear buds.
Yes, I have noise cancelling headphones AND earbuds. After I purchased my headphones I started hearing a lot of buzz (no puns intended) in the autistic community about Here Active Listening earbuds. These actually do a lot more than noise cancelling – basically they are a smartphone-controlled EQ system for your ears – but I mainly use them to block sound. They started off as a Kickstarter project and now are issuing a trial run of the buds, which means you must sign up on a waiting list, and when a pair are ready for you, you receive a code in order to purchase one pair. For me this took exactly 6 weeks (plus a 2-3 days’ shipping), which seems typical from what I’ve heard. Currently a set of Here buds costs $200 but once out of the trial phase they will likely go up to $250.
I was nervous about buying Here buds because, like many people, I worried about whether they would be uncomfortable. I have small ears and many earbuds do not fit me at all. Here buds come with two or three different sizes of squishy flexible bud attachments, and yes, they fit me well. There are some times when I don’t like the feeling of them in my ears, but most of the time, they’re fine. I would say if you HATE earbuds do not get these, but if you can tolerate a soft earbud, they are pretty comfortable.
The EQ itself is very good, has powerful noise cancelling ability and can be adjusted in many ways, by turning up and down the decibels, bass, treble, etc. It comes with a number of preset “filters” and also a custom live EQ setting. One common complaint is that it does not have a directional microphone; that means you can tune out everyone’s voices or tune in all voices, but you can’t tune in the person sitting across a table from you while blocking out the people behind you – though I’ve read they may try to add that feature in a future model.
My main complaint is that my Here buds are a little buggy. Sometimes I hear a buzz in the left one. And I often have trouble with trying to disconnect them from Bluetooth and reconnect within a single day – so it’s usually easier to just leave them on, and switch back and forth between a noise blocking filter like “Office” and a tune-in filter like “Human Speech” if I need to, for example, hear the kids playing in another room, and then tune out again. These issues can be resolved by resetting the buds, but that’s kind of a pain in the ass if I’m in a state of overload and needing relief. Even so, I use these quite a lot. They are less cumbersome than my headphones, I enjoy not having something on my head when I use them, and they’re so small and discreet that it’s very convenient to throw them in my bag when I leave the house in case I need them while I’m out. For anyone with noise sensitivity who doesn’t mind earbuds, I recommend them highly (more than the headphones, if you have to choose).
This is NOT a support I am comfortable recommending to just anyone, since everyone is different and some people do not do well with medications and some choose not to take them, which is their right. However, I wanted to include meds because for one thing, it’s the truth – they have helped me immensely – and for another, this is me doing my little part to push back against ableist attitudes toward psychiatric medications. I view meds as just another support, one that people should be able to freely choose for themselves, and hopefully should be able to get help finding one that really works for them.
A thing about being a neurodivergent person, particularly one raised and socialized as a girl, is that you tend to defer to anyone in anything resembling a position of authority, even when you know they are wrong. You’re pretty sure they’re wrong. But they probably know better so maybe they are right? I won’t go into all the boring details but I took an antidepressant that wasn’t helping me, instead of the ADD med I knew I needed, for nine months, because I didn’t fully trust myself to know better than a doctor how I felt and what would be good for me. Eventually I found a better doctor and a better support.
Taking a drug doesn’t mean that I don’t accept my neurology – if anything, I am better able to appreciate the beauty of my ADD-autistic mind now that I am not scraping the bottom of the barrel for the inner resources to function. I don’t feel like someone else, I feel like my real self, the self I was before things got overwhelming. Maybe if I could move out to the seaside and live in a wifi enabled cottage and my kids were a little older and more self-sufficient or I had more help – and if life were simpler, maybe I wouldn’t need meds, but right now my environment is such that I need a little pharmaceutical support and I am not ashamed of that. Nor should you be if you need that too.
(Side note that I dislike the terminology of “attention deficit disorder” (I mean, really!) but am using it to be understood by a broad audience. I would love a better term, maybe attention divergence?)
Oh how I love Habitica!
When I got off the antidepressant and on ADD meds, the boost in mood was immediate, but executive functioning improvements still took more time and effort. Fortunately I remembered another autistic person I knew online had mentioned months back (when I was still too overwhelmed to even consider it) that they used Habitica to get their stuff done. I suspected that a task manager set up like a video game would be perfect for me, and I was right.
The above photo is a screenshot of my actual Habitica dashboard on my computer (I also have it on my phone but I use the desktop version more). At the top left is my avatar: yep I’m a Level 14 Rogue riding a golden lion and accompanied by a white bear cup, and proud of it. To the right of that are the members of my party, a social function you can use, or not. Below all that I let you see some of my tasks and how they’re organized on Habitica (as you can see I’m in a bit of a nest feathering phase with my to-do list).
I looooove this game. I don’t avoid or forget to check my to-do lists anymore because… it’s fun! This is another thing that I’m sure won’t work for everyone, but for me, getting a couple of pieces of virtual gold for doing the dishes feels motivating. It helps me manage my time, not stress about deadlines, and it also helps me to relax and enjoy my downtime because I don’t have to worry that I’m forgetting an important task.
This is not an app or a medication, but actual downtime. And plenty of it. Half a lifetime of “playing life in hard mode” has conditioned me to feel like I always have to be hustling just to keep up with the minimum standards of getting by. I’m aware that it doesn’t always appear as such from the outside, but I have always felt like I am working twice as hard just to do the things that everyone else seems to do with ease. A former friend once described me as “ambitious,” and at the time I was genuinely shocked by that characterization, but now I think I understand that being driven to succeed, somewhat perfectionistic, hard on myself, and religious about productivity, are adaptations I have cultivated (mostly unconsciously) in response to having an invisible disability.
But the cost of those adaptations is that I repeatedly push myself too far and crash. That worked well enough – I could hide it, mostly – when it was just me, but now I have a family, and it’s too hard on all of us for me to be crashing all the time.
So I am learning to build in lots of downtime as an essential support. It helps that my kids need this too (one of them especially does) so it’s not really an option to skip it. The actual *time* has been available ever seen we chose to home-school, but the pressure I put on myself to “be productive” every day was still there. Additionally, getting to the point of rolling burnout meant that I never actually experienced relaxation – only crashes. There is no downtime in survival mode, only survival. So, all of the above supports enabled me to access downtime, and untangling myself from the internalized ableism that drove me to always-be-productive is necessary in order to truly relax.
Erin Human is the Art Director for Autism Women’s Network, and also founding co-Director of Autistic Families International, a community group creating change in families and communities by educating, encouraging, advocating, and upholding the rights of autistic parents, children and young people.