By the Time an Autistic Person Complains, They Have Already Been Suffering For Hours

I was out at the store with my partner last week, and I was so hungry, I was ready to pass out. She was hungry, too, but we both waited until we were to the point of feeling sick to finally leave the store and go get something to eat. 

We’re both autistic, so it’s common for us to either purposefully or unknowingly ignore our bodies’ needs until they become unbearable. This is very common for autistic and otherwise neurodivergent people, however, my partner and I know how to check in with ourselves and practice self-care. 

Unfortunately, not every autistic or otherwise neurodivergent person is aware of their tendencies to ignore (or not be aware of) their bodily needs. This can be especially difficult for autistic children and their caregivers because a change in behavior or a meltdown may occur even when there seem to be no sensory triggers present. 

There are a few reasons why autistic people may struggle with taking care of our bodily needs: 

Poor Interoception

Interoception is the ability to be in tune with one’s internal bodily needs. For example, being aware of hunger, thirst, a need for the bathroom, a need for sleep, etc. Most neurotypical people have balanced interoception. Their bodies signal them that they are getting hungry or getting tired, and they can take steps to take care of those needs before they become emergencies. 

For many autistic people, however, our bodies may give us the signals we need to take care of our physical needs, but our busy brains may not pick up on them until we are incredibly hungry or desperately sleepy, so we can’t take care of the need until we are ready to drop from hunger or sleep deprivation. 

If a person takes care of their bodily needs before they become an emergency, their emotions and mood will most likely stay stable, whereas a person who isn’t aware of their bodily signals until they become emergencies might experience instability in emotions and mood, which can, ironically, impeded the person’s ability to take care of those needs. 

Example: An autistic person hasn’t eaten in 12 hours, but, instead of their stomach rumbling, they feel sleepy and take a nap. They wake up hungrier, and by the time the autistic person is aware that hunger is the issue, they are too tired, too disoriented, and too weak-feeling to cook a proper meal. So, they grab whatever is available and eat it quickly to get rid of the awful sensory experience of clawing hunger.  

Lack of protein and low blood sugar can increase feelings of anxiety, which can bring about a meltdown or an increase in sensory processing challenges. Again, this can be very confusing for both the autistic person and their loved ones because the autistic person may not be able to communicate the cause of their emotional upheaval because they aren’t fully aware of the cause, and their loved ones may be at a loss of what to do to help. 

Hyper-Focus 

Autistic and otherwise neurodivergent people often hyper-focus on our passionate interests. For me, if I’m playing The Sims, I will forget to eat, drink, sleep, and go to the bathroom. I mean, I’ll do those things eventually, but the bodily need often has to become an emergency before I tend to it. The same goes for when I’m writing. If I’m in the middle of doing a writing project, it can be almost impossible for me to stop and attend to my physical needs. 

I’ve had previous roommates look at me sideways because I won’t get up to turn the light on or even realize the sun has gone down if I’m deeply involved in a project. It’s like there’s a part of me that’s somewhat aware that the world is going dark around me, but it doesn’t come to the forefront of my mind enough to get up and turn on a light. 

Memory Challenges

Memory is a big issue for me, too. I have a terrible working memory and short-term memory, so when I’m deep into what I’m doing, with what feels like a million tabs open in my brain, I feel like I have to tie all the invisible threads of my project together before I can do anything else because if I don’t, I’ll forget something important and have to get back into the groove all over again (which isn’t easy). 

Trauma Response

Another reason a neurodivergent person may ignore their needs in a more intentional way (instead of being unaware of them due to poor interception) is a trauma response. Many autistic adults, especially those who were diagnosed as adults, like myself, were picked on, disbelieved, and questioned about our “unusual” ways of interacting with the world, which may have interfered with our instinctive ability to take care of ourselves. 

Unintentional Gaslighting Causes Complex PTSD in Autistic People – (Free Downloadable eBook)

I’ll give you another example: I have to pee a lot. Always have. I’m not diabetic, and, so far as I know, there’s no physical reason for me to have to use the bathroom so much, but here we are. When I was a child and young adult, I was forever told I went to the bathroom too much. I was asked what I was “really doing in there” and even accused of visiting bathrooms in other people’s homes so I could spy on them or take their things. 

Of course, there was no validity to that, but my “unusual” behavior begged an explanation, so the neurotypical people around me came up with whatever made sense in their brains at the time. 

Even as a young adult in the working world, I still had bosses question me about my bathroom habits, and one even stood outside the bathroom door listening to me and about scared the wits out of me when I opened the door. 

Eating habits can be another big trigger for some autistic people due to adults questioning or making fun of their food choices, need for samefoods, or preferring to graze instead of sitting down to family meals. 

Another Important Note on Trauma Response

Another reason an autistic person may not voice their needs until it’s almost too late is because we are deeply afraid to “cause a scene” or upset whatever delicate balance is happening in the social situation we’re in at that moment. 

Especially if we were consistently shamed for voicing our needs because we did it in an “inappropriate” way or “at the wrong time”. 

Also, and this is important, an autistic child, teen, or adult may tell you that they are in pain, and it may seem like they are mentioning it in passing because their face and voice seem neutral enough, but they may actually be in terrible agony and have been for days or weeks. They are only now just telling you because they can’t hold it in anymore, and their physical discomfort and/or concern for their health and safety has become stronger than their fear of making a social mistake and being abused for it.

Keep that in mind, especially if you know your autistic loved one has been traumatized in the past. 

How to Tune Into Bodily Needs 

I make a point to check in with myself regularly to see what my body needs. Dialectical Behavior Therapy (DBT) has been hugely successful in helping me do that. DBT is about mindfulness and awareness of body, emotions, and self, which I was very disconnected from due to being autistic and having complex PTSD. 

These tips have helped me, and they may help you and your autistic loved one, as well: 

• Awareness

Since interoception is automatic for most neurotypical people, the thought that somebody wouldn’t be aware of their bodily needs might never occur to them as a potential cause of distress, which means it can often be overlooked. 

If you’re the parent of an autistic child, I would recommend asking them (when they are not distracted) what hunger, thirst, or having to use the bathroom feels like in their body. You may be shocked to learn that your child has no idea! If this is the case, explain, in detail, the feelings that you associate with these bodily needs to help them recognize those sensations in themselves. 

Note: This won’t always work in the case of poor interoception, but it can help in the case of hyper-focus, poor memory, or trauma response. 

Reinforcing the awareness of bodily sensations can look like telling your child what your body is feeling. For example, “I’m really hungry. My stomach feels tight and is growling. I need to get some food.” or “I keep yawning, and I can’t focus on this TV show. My eyelids are starting to feel heavy. I need to go to sleep.” or “My throat is really dry, and my tongue is sticking to the roof of my mouth. I should get a glass of water because I’m thirsty.”

• Reminders

Sometimes, interoception is such a challenge for your autistic loved one, that reminders to take care of bodily needs should be put into place. This can look like having a visual schedule or a check-in list taped around the house, or a reminder app where you and your child can program in reminders to take snack, rest, and bathroom breaks. 

I think a check-in list would be especially beneficial for those who are unsure of what they are feeling in their bodies, so they can trace back emotions and behaviors to unmet needs. 

An example of a checklist might be: 

1. Am I thirsty? (Dry throat, cough, sticky feeling in the mouth)
2. Am I hungry? (Tired, irritable, stomach feeling empty or growling)
3. Am I sleepy? (Yawning, stretching, eyes drooping, heavy feeling in limbs)
4. Am I sick? (Nausea, feverish, tired, muscle pain)
5. Sensory overload? (Eyes hurt, ears hurt, head hurts, losing patience and focus, increased comfort stims, need to be alone)
6. Bathroom? (Pressing sensation on bladder, increased flatulence, gurgling in lower intestines, pressing sensation in lower intestines, stomach pain)
7. Affection? (Seeking out others, feeling of wanting to be squeezed, needing reassurance, feeling unsure or unsafe)*

A checklist like this could also include visual supports that shows how these feelings and sensations manifest and what to do to take care of them. 

*As every person is different, it’s important to keep in mind that this checklist is only an example and may not reflect the sensations that you or your autistic loved one experiences, so it’s important to tailor such lists to the individual. 

The Takeaway

If your autistic loved one struggles with understanding their bodily needs and how to respond to them, it may be causing meltdowns you can’t pinpoint. As I mentioned before, many of us will wait until the absolute last minute to take care of a bodily need. This isn’t due to purposeful stubbornness, it’s just the way our brains and bodies are wired. 

These tips should help you better understand what your autistic loved one is going through and how best to support them. 

As always, I also recommend reading books written by autistic people to better understand the autistic mind and way of processing and interacting with the world. It will help you gain a perspective that you just won’t be able to get from a neurotypical doctor trying to educate you about your child from a clinical standpoint. 

---

Books for Better Understanding the Autistic Brain

(Whether you’re an autistic person who is newly diagnosed, or you have a loved one on the spectrum, the books below can help you better understand the autistic brain.)

Want downloadable, PDF-format copies of these blog posts to print and use with your loved ones or small class? Click here to become a Patreon supporter!