The last time this happened, I lost a summer. The longest was nine months or so. At least I have a word for it now. Before my diagnosis, I thought of it as me being “weak/useless/wrecking everything” (ha, I still think that a lot of the time; acceptance is a journey..!) and then, when I had a really bad one, I thought maybe this was what a nervous breakdown looked like. I’m autistic, so my brain doesn’t register stress chemicals in the same way as neurotypical brain. This makes me great in an emergency or at a funeral, and the best person to break dead-pet news to kids. It also means I don’t feel the same ‘hey take a break’ signals until it’s too late. In other words, when my tank is empty the fuel gauge tells me I’m still sweet-as so I drive on… right up until I don’t.
Because of the way my brain processes the world, I’m having a pretty intense everyday experience. To me, some sounds are louder, lights are brighter. Movement and water can be mesmerising, textures distracting. I don’t have a good sense of where my body is in space and I can mix up how it feels, so I’ll misjudge distances and bump into things, wear the ‘wrong’ clothing (i.e. no shoes in winter, coats in summer), I have super-specific food preferences, and look awkward even when I’m the most comfortable. From the outside, none of these things are big, noticeable signs (otherwise I would’ve been diagnosed far earlier, and people wouldn’t still say to me “but you don’t look autistic!”) but on the inside, all heaven (or hell) can be breaking loose, and I’m so used to covering it up, that (usually) you’d never know.
Bottom line: I’m on the same planet as everyone else, but not in the same world. (And it’s not a bad thing, it’s actually pretty awesome – it’s only challenging because I came late to the autism party, so I’m still figuring it all out! High-fives to the families who know what’s happening and talk about it with their kids and put strategies in place so shutdown can be the totally regular and understandable part of autistic life that it actually is.)
I’ve had shutdowns my whole life; I just didn’t know what they were. Withdrawing, going quiet, isolating myself, disappearing, sleeping. Sometimes half an hour or an afternoon, sometimes longer. My diagnosis gives me a far better understanding of the whole deal- I use adrenalin to push through things that can seem everyday (sometimes even fun) in a neurotypical world (travel! Photo shoots! Parties! Leaving the house!) and when it hits breaking point my body pulls rank on my brain, and pulls the plug. It’s not like I don’t consciously realise I’m stressed; I know I’m busy, doing a lot, taking on too much. But I also feel sure that I can push a little longer, do a little more, that a slow time is coming and I can make it… I tell myself: one more day, one more week, one more project. I say things like “but I love all of these things! Which one do I slow down on? I’m soooo close!” then rattle off all the reasons I ‘can’t’ or ‘shouldn’t’ slow down.
The human brain is powerful. It can override your physical instincts. Have you ever ignored hunger pangs? Pretended you weren’t in pain? Held back tears? Have you ever needed to go to the toilet, and held on waaaaay longer than you ever would if a bathroom was available? Lifted up a car to save your kid? When your physical body is in trouble, your brain triages so that physical resources (oxygen, blood, energy) only go to where they’re absolutely needed. Your arms and legs might go numb because blood is redirected to your heart or bullet wound. You might go into shock and not feel pain until you’re in a safe place. Adrenalin is supposed to be a survival mechanism, a short term boost. A stress response; fight, flight, freeze, friend, or flop. But for me, adrenalin makes life possible and much as I think I can keep it up forever, shutdown reminds me I can’t. Meltdowns are outwards, crying screaming kicking. Shutdowns are inward, numb, silent, withdrawn. This is another reason female autistics are (usually) harder to spot: while a male autistic is melting down, yelling and breaking things in a classroom, the female may be shutting down, unable to speak, or move. One quiet kid in a class, hardly a red flag. Under the radar, easy to miss.
Do you know the Spoon Theory? It’s a brilliant analogy for how people with chronic pain have to allocate their energy. This is so relatable to me as an autistic. We all have a certain amount of energy to allocate each day. Different tasks, situations, and environments require different amounts of energy (spoons). Being autistic and a parent adds some interesting elements to shutdown (another blog, another day :)) So I might have enough spoons to leave the house and make it to work, but not enough to talk while I’m there or do anything once I get home but sleep. This is why during my biggest shutdown, I could still get myself to the two physical commitments I had each week (classes and book club) and no one there would have known (or probably believed) that I got out of bed to be there, and went straight back to bed afterward. For me, work now is always doable, writing deadlines can always be met when you’re not confined to working 9-5 and you only need your brain and fingers to get the work done. None of the office politics, social navigation, masking, outside world. Welcome to Shutdown: a release valve, a survival mechanism, a consequence of colouring outside the lines. Awesomeness as side effect.
If someone you love is autistic, a shutdown is their cast, their cocoon, their insulin. It’s not forever, it’s not your fault, and the best thing you can do is truly support them (shout out to my husband, Paul <3).
Provide what they need: darkness, isolation, pillows, weighted blankets.
Tell them it’s okay (and mean it).
Tuck them in (if they like that) and tell them it will take as long as it takes, and you will be there for them.
Remove as many commitments and obligations from them as you can.
Be Teflon. This is not personal. They are not being manipulative, lazy, or stubborn. Remember this is an uncontrollable physical reaction.
They probably feel frustrated, useless, and weak. Tell them that taking care of themselves is the best thing they can do (and mean it), tell them that it will be okay. It really will.
Jolene is an autistic writer, speaker, and parent.
Since her 2018 TEDx Talk going public with her diagnosis, Jolene has been inspiring corporates, communities, and global giant IBM with her fresh and exciting perspective on autism.
Ultra-enthusiastic author and TEDx speaker Jolene Stockman is tangata whaitakiwatanga (autistic). This fast-talking, big thinking Kiwi is excited to empower autistics – and the neurotypicals who love them – with her vision of the world. Jolene lives in Aotearoa, New Zealand.