[image description: You are standing beneath a mighty live oak (Quercus virginiana) in central Florida, looking up at a heavy, gnarled tree branch dripping in Spanish Moss (Tillandsia usneoides). The sun is just hidden behind the branch and its light shines down through the limbs, illuminating the fluffy yet intricate twists of parasitic angiosperm, creating something of a magical, ethereal effect in the process. Photo copyright Sparrow Rose, 2016]
By now, pretty much everyone who knows much of anything about autism has heard of meltdowns — episodes of frustration and panic that seriously disrupt the lives of Autistic people, to varying degrees and amounts per person. But shutdowns don’t seem to get talked about as much as meltdowns and I run into people who, despite the blue-illuminated buckets of “autism awareness” out there, were completely unaware of the phenomenon of shutdown.
I had a pretty bad shutdown last week so I thought I ought to write a little bit about them. The people in my day-to-day life were unprepared to deal with a shutdown and that increased everyone’s stress levels. More education about shutdowns can’t hurt and it could help quite a bit.
Shutdowns and meltdowns are more similar than they might appear on the surface. One (somewhat simplistic but workable) way to think of a shutdown is a meltdown turned inward instead of outward, much as some people describe depression as anger turned inward.
My most recent shutdown started off as a meltdown. My brain was going through all its usual short-circuits when some synaptic gap got crossed. Or something. One minute I was out of control, smacking myself in the face, as one does, and the next minute I was on the floor, unable to move. I started to get tunnel vision. My hearing began to get fuzzy. My vision closed and closed like turning off an old tube-driven television, closing down to a tiny dot of light that winked out just as my hearing entirely cut out, leaving me alone in the numbly terrifying darkness.
If you like to get your information from audio and video, you should take ten minutes to go watch Amethyst Schaber’s magnificent discussion of Autistic shutdown on their YouTube channel, “Ask an Autistic.” I’ll wait.
Shutdown is a response to overwhelm. It is a self-protective response — shutting down the circuits before they fry, to use computer/brain analogies — but it is as much a system overload as it is a system failsafe. And too much overwhelm for too long can cause some longer-term shutdown and loss of basic skills. We’re talking everything from forgetting how to tie your shoes to forgetting how to speak. And it can hit at age 14 or age 24 or age 54.
As Mel Baggs explained it: ” Most people have a level to which they are capable of functioning without burnout, a level to which they are capable of functioning for emergency purposes only, and a level to which they simply cannot function. In autistic people in current societies, that first level is much narrower. Simply functioning at a minimally acceptable level to non-autistic people or for survival, can push us into the zone that in a non-autistic person would be reserved for emergencies. Prolonged functioning in emergency mode can result in loss of skills and burnout.”
I my case, it was just a matter of hours before I started coming out of shutdown, much like an ocean creature finally creeping onto a deserted beach after a long swim across the Marianas Trench of shutdown. But I only had one, isolated shutdown. An extended amount of time living on “personal emergency reserves” due to being forced to operate at a higher clock speed than my chips are rated for, combined with a series of shutdowns would have left me pretty burned out. I’ve gone 17 days in shutdown before, unable to speak or properly care for myself. This is why shutdowns must be treated with caution and this is why going to apparent extremes to avoid shutdown is not “lazy,” “spoiled,” “entitled,” or any other judgmental adjective anyone has ever been tempted to drop at an Autistic’s feet. Or heap on an Autistic’s head, for that matter, since it’s often on the floor alongside the feet once shutdown hits.
Miller and Loos wrote about shutdowns and stress, both in a manner accessible to laypeople and in an academic paper. Their observations were based on a case study of an Autistic six-year-old girl who was prone to shutdown under stress. The authors found that shutdown behavior gets labeled as conscious avoidance but is more likely an involuntary physiological process caused by “stress instability,” an inability to regulate the body’s overwhelming response to stressors. The authors hypothesize that shutdown begins with the basolateral amygdala (BLA) in the brain and quickly spirals into a debilitating feedback loop: the BLA is involved in experiencing emotions. When the BLA becomes overstimulated, it can become hyperreactive, leading to extreme emotionality, heightened levels of fear, and social withdrawal.
The BLA can quickly become hyperreactive when exposed for too long to corticotropin releasing factor (CRF), a “stress-mediating neurotransmitter.” In other words, stress gives the BLA a hair trigger and the resulting explosions feed more CRF to the BLA, ramping the overload up in a ratcheting cascade of intense panic that finally flips all the breaker switches, resulting in shutdown. This is probably why my own meltdown tipped over into shutdown: I had been stressed for days with multiple meltdowns and my system just couldn’t handle any more stimulation so it shut off to prevent my brain from frying itself. My brain crawled up inside its own virtual Faraday cage to wait things out.
In the case of “the SD child,” Miller and Loos observed that one shutdown would make her extra vulnerable to more shutdowns during the following three weeks. It takes that long for the BLA to “come back down” from its hyperaroused state. It’s pretty easy to see how quickly things can take a bad turn if the brain is not given time to heal. This is the low-detail version of why I have a medical discharge from the Navy and why I was able to hold a series of minimum-wage jobs before the military but unable to get a job at all afterwards. When I signed up for the Navy, I didn’t understand my neurology. It was a devastating blow to not only fail at boot camp but come out of it so debilitated I couldn’t even keep a roof over my head any more.
This is why I speak so strongly about helping Autistic children to build low-stress environments that nurture rather than damage their neurology. This is why I warn so often against shaming Autistics for not “pushing the envelope” the way you think they ought to instead of the way that protects them from damage. Of course it’s healthy to step out of one’s comfort zone from time to time. What you need to remember is that the entire world is outside of an Autistic’s comfort zone. We live our whole lives outside that zone. Please recognize and honor that. I just can’t say that enough: we are trying and the obstacles can be as massive for us as they are invisible to you.
Treat shutdown as the medical situation it truly is. Help us get away from bright lights and loud noises. Help us find a quiet space to re-regulate our nervous system. And be gentle with us as we recover from a neurological episode, understanding how delicately balanced our brains are after marinating in the biochemicals of stress. We need support, not blame. We need peace and stress-relief, not punishment. And, always, we need love, understanding, and acceptance.
Thank you. This is so helpful.
This line! “This is why I speak so strongly about helping Autistic children to build low-stress environments that nurture rather than damage their neurology. ”
YES, YES, YES! I just discovered your blog and I will be reading more. This is what I try to do so hard for my son. We don’t make him keep pace with the rest of the family, but of course there are times that he does need to get out of that comfort, so I do what I can to help him before and after when that is needed. One big example of this is that his sisters are on a swim team. I learned very early that dragging him to meets with a bunch of people on hot summer days for hours on end to watch a few quick races was not going to happen.
At the same time though, it would not be fair to the girls or to dad for dad to miss every meet. Getting up at the crack of dawn on the weekend to drive an hour and set up camp became my job since I am home during the week, so dad could enjoy his sleep on weekends. But we set some rules too. The whole family would be part of our home meets. After all those are in town and a retreat to home is entirely doable. Also, championships would be a family affair. They were different because it was far enough we had to have a hotel, and the meet was indoors with A/C and power outlets.
We have done this for 3 years now and my son actually enjoys going to watch his sisters events at those two meets. The first year, he hid away with electronic devices and did not watch. He now talks to other kids and adults though he still keeps his electronics close. They do wear him out, but I always give him room to chill when we get home. The girls don’t like it, but he gets first dibs on the computer for a day or two so he can get back to a good place after all the extra stress. (He plans to program video games and is learning basic coding right now.)
Thank you so much! As a recently diagnosed autistic adult this explains me to me! 3 weeks though- s#$/. I had my first public meltdown into shutdown on Sat and Im still supersensitive this Wednesday. This article makes so much sense.
Im also working with a boy who is terrified of school -but also wants to be there and with other kids. Sometimes I wonder am I pushing him too slowly-this reminds me that now I have his trust, I must totally trust him to lead the way.
Thanks for describing this so clearly! I’ve lived a lifetime going from one shutdown to the next, called “burnouts”. I hardly know of meltdowns myself… Every time I had an “episode” trying to make it as brief as possible, with a nagging employer breathing in my neck. Not knowing what was the matter with me was terrible! It took me until I was 45 to get the diagnosis Autism. I always tried to hang on to the little jobs I was able to function in, but even that seemed an impossible task. So…. I haven’t had a job for almost nine years by now. Combination autism, bad economic crisis and my age. (In Holland it’s getting harder and harder to find a new job once you’re over 45 years of age).
The good part is that I do know that it’s autism and I recognize it when I am entering the Red Zone of Sensory Overload. My vision starts to blur and it’s like the colour drains out of it, I start to fear noise and don’t want to go outside anymore…
At the moment I am again in a “mild” shutdown. Cleaning out my house and getting rid of my mother belongings – finally two years after her passing away – proofs to be a bit too much and a lot of getting used to… But I know that when I take time for myself I will heal again…
Hi Conny, … thank you for your post. I can relate to your situation and how you struggle with various aspects of autism. I hope you are okay and that you may be able to work again. If you want to correspond with a lady who is similar to you, please feel free to email me. I’m a 53 year old lady who also is unable to work. Take care, Leonie Cent leoniecent at iCloud dot com.
Does shutdown really cause us to forget our skills? If it does, it sounds scary. When we recover from a shutdown, would we have to relearn those skills? If not, it might mean that shutdown clears our short term memory. If so, do partial shutdowns have the same effect?
Is it possible not to know when you have a partial shutdown? It’s true that not all autistic people have the same symptoms.
I think awareness is important especially when their symptoms are too subtle. If we don’t feel sensitive to sounds even though it causes our senses to fade, we might say no when people ask whether the room is too loud. It’s possible that we’re so used to sensory overload that we don’t know that we’re getting to much stimuli. People may assume that no accommodations are needed but that can’t be true if they don’t function well. We should keep trying different ways of improving their functioning.
Their less than sharp minds from sensory overload may sadly be mistaken for a lack of interest or daydreaming. There’s so many reasons for appearing as lacking interest such as hunger, lack of sleep, sleeping irregularly, lack of sunlight, stress, dehydration, over working, lack of exercise, unhealthy diets, and an actual lack of interest.
I think it’s a good idea to experiment. Someone who seems high functioning might benefit from wearing ear plugs even though it’s less than 85 dB, or minimizing other distractions. Even while shopping, I wear ear plugs.
Your article saved my friendship. I had a shutdown yesterday, completely out of the blue. My houseguest was confused and getting angry. She didn’t understand why I wouldn’t talk to her. I was completely non-verbal so I couldn’t explain what was happening. Then I remembered your article. I sent it to her phone. She read it and realized I wasn’t just being a jerk. Crisis averted! Friendship saved!
Thank you.
Wow! Thank you for letting me know about your experience. I am so grateful I was able to help you so much. That’s major! Thank *you*.
Hello all,
I had a shutdown only two days ago, so this article has been serendipitous for me. Thank you so much for a very professional explanation of this condition and what it means.