Help! My Child is Regressing! – On Autistic Burnout and How to Manage It
Baden is the president of the Autistic Self Advocacy Network of Winnipeg, and is, herself, autistic. In this post, she provides advice that parents may find useful as the school year wraps up.
In my time interacting with parents of autistic children, there is one question I have seen more than almost any other: parents panicked by the fact that their children are acting differently than normal, or seem to be losing skills they had before. I’ve heard this called “regression”, “stubbornness”, “laziness”, “acting out”, and sometimes even “becoming more autistic”. Very few, if any, of them know that the cause of their children’s struggles is actually something called autistic burnout.
What is Autistic Burnout?
Autistic burnout has been discussed in many forums, blogs, and informal groups organized by autistic people, but unfortunately there is very little formal research on the subject, and so many parents and professionals are still unaware of what autistic burnout is or how to support somebody going through it.
On the most basic level, autistic burnout means being exhausted. Our brains and bodies get tired out, and we don’t have the energy to do the things that used to come easily to us. This does not mean that we are regressing or becoming “more autistic” than we were before. We still have the skills we always did, but now we’re just too tired to access those skills.
Consider a marathon runner. This person is very physically fit. They have the skills, determination, and physical power to do amazing things with their bodies. And yet, the day after running a marathon, most athletes will take a day off. They’ll take long baths, put their feet up, maybe even take a few days off work. They certainly won’t go out for a run like they did in the weeks leading up to the race. This doesn’t mean that the marathon runner has lost the skills involved in running, or that they are being lazy or unmotivated. They’re just tired after spending a lot of energy on the race, and they need some time to recover.
Autistic burnout is very similar. Most of the time, the person going through burnout still knows how to do the things they usually do, their brain is just too tired to put those skills into practice. The difference between somebody who just ran a marathon and somebody going through autistic burnout, however, is that while a marathon runner’s exhaustion is mostly in their physical body, the exhaustion people feel while going through autistic burnout is in the brain. This means that it affects every part of our lives, not just our ability to move around.
What Causes Autistic Burnout?
Autistic burnout usually happens in times of stress, or when somebody spends a lot of energy over a long period of time. This stress can come from many places, but some of the most common are:
- Being too busy with school, work, therapy, social events, sports, clubs, etc. and not having enough time to themselves to recover.
- An increase in responsibility such as a lot of chores, homework, employment, etc.
- A change in routine or environment, such as starting or ending school, joining a new club, starting a new therapy, making a new friend or starting a relationship, starting a new job, or moving to a new neighbourhood. Even good changes can cause burnout.
- A change in body or identity, such as illness or injury, receiving a new diagnosis, puberty, pregnancy, menopause, or anything else that changes the way our bodies act or how we think about them.
- Being in a situation where we need to pass as non-autistic for an extended period of time.
When trying to identify stressors, it’s worth noting that autistic people may find some things stressful that wouldn’t be stressful for non-autistic people, such as being outside where the sun is too bright, or in an especially noisy environment.
How Do I Recognize Autistic Burnout?
One of the first signs of autistic burnout, especially in children, is an increase in the number of meltdowns. Some people interpret meltdowns as tantrums or stubbornness, but they are actually an uncontrollable flight-or-fight response, and are incredibly scary and exhausting for the person experiencing them. Meltdowns happen more often as people approach autistic burnout because it is harder for the brain to process stimuli in other ways.
In teens and adults, burnout can manifest as a decrease in personal care skills and can seem from the outside like a lack of motivation. This comes from a difficulty breaking tasks down into manageable steps. For example, the task of making a sandwich requires going to the kitchen, then finding the bread and some ingredients, then taking things out of the packaging, and so on. To somebody going through burnout, the sheer number of steps involved in making a sandwich can be overwhelming, and they may choose instead to skip eating altogether.
Sometimes, burnout comes on slowly and steps can be taken to avoid it, but sometimes people can have lots of energy and feel completely fine right up until they crash. This is especially common for adults and teens who have internalized the idea that they are supposed to always be able to handle things on their own and to never seem weak or vulnerable. This can be very distressing when people realize that they suddenly can’t do all the things they had been doing before.
My Child is Burnt Out. What Now?
The best thing we can do for somebody who is burnt out is to allow them to take a break and give them time. Drop a class or a club, let them have a break from school or work fewer hours, cut down on time spent in public or around people who make your child feel uncomfortable and situations in which your child feels an expectation to pass as non-autistic. The more you can allow for time alone or in comfortable, pressure-free situations, the faster burnout will go away. The main thing to remember is not to push the person to do more, or even to return to routine expectations, before the person is ready. This can make burnout worse, and can sometimes even do permanent damage.
Another thing to remember is to pay close attention to what some people refer to as a “sensory diet”. Avoid potentially overstimulating situations, and when you can’t avoid them, allow for time afterward (or even during these times) to stim in ways that help your child calm down. This can be hard to do sometimes, especially for people who have learned to pass as non-autistic as a coping mechanism, but it is a very important part of a healthy sensory diet. It can be helpful to deliberately schedule time in the day for stimming, to put notes around the house reminding your child to stim, or even to remind your child to take this kind of a break.
Burnout can be exhausting and unpleasant. Getting through burnout takes time and patience, but with support from family and friends and a willingness to take a break when needed, your child will come out the other side and feel better again.
Sources and Further Reading
“Ask An Autistic #3 – What is Autistic Burnout?” by Amythest Schaber
“Burnout on the Autism Spectrum” by Kate Mia
“Autistic Burnout” by Kezza
“Autistic burnout/ regression/ inertia – it’s not just me” by Jax Blunt