In my last post, I talked about my recent language difficulties and mentioned autistic regression. Sometimes called autistic burnout, autistic regression is a loss of skills or coping mechanisms.
Regression can refer to a specific set of skills or abilities:
progressively losing the ability to speak
deteriorating executive function
reduced memory capacity
loss of self-care capabilities
loss of social skills
reduced ability to tolerate sensory or social overload
It can also refer to a general loss of the ability to cope with life or to accomplish all of the necessary daily tasks of living.
Sometimes the loss is temporary–a period of a few weeks or months–after which a person regains the lost abilities. Other times the deterioration in skills or coping mechanisms takes place over years. It may be come permanent or semi-permanent, with skills being regained but not to the level at which they previously existed.
Often a period of autistic regression begins during or after puberty or during the transition to adulthood (late teens to early twenties). Mid-life is also a common time for autistic people to experience burnout or regression. In fact, many people (including me) list a noticeable change in their ability to cope with daily life as one of the reasons for seeking a diagnosis. However, autistic regression can happen at any age and is often preceded by a major life change or a period of increased stress.
How Accurate is Regression?
The phenomenon of losing skills or coping mechanisms is very real. But is regression an accurate term to describe what’s happening? It’s a word that I’ve seen used frequently–often by parents or therapists to describe a loss of skills or capabilities in an autistic child–but also by autistic people themselves. It’s also a word that implies going backwards in a way that might not be helpful for the person who is being described.
It doesn’t help that there are multiple ways of defining regression. The classical Freudian definition often used by psychologists refers to regression as a defense mechanism in which a person abandons coping strategies and reverts to patterns of behavior from an earlier period of development. This suggests a willful loss of coping strategies or abilities.
A more general definition of regression is a shift toward a lower or less perfect state in the form of:
progressive decline due to disease (or)
reversion to an earlier mental state (or)
a gradual loss of skills or function due to aging
Those first two–decline due to disease and reversion to an earlier mental state–are often how regression is used in reference to autistic individuals, especially children. For example, a child who had a lot of meltdowns as a toddler seems to be doing much better throughout elementary school. Then he hits puberty and the meltdowns return in full force. To describe this as regression can incorrectly suggest that he’s returning to his toddler state of mind.
The same is true of a youngster who is potty trained but suddenly starts having accidents when she begins elementary school. Or of a young adult who completely stops social interaction in the weeks after entering college. It’s easy to look at these individuals and assume they’ve regressed to an “earlier age” or mental state.
Is that what’s really happening? Not literally, no.
It’s important to remember that an eight-year-old who can’t toilet themselves is still an eight-year-old. A thirteen-year-old who has daily meltdowns just like he did as a toddler still has the body and mind of a thirteen-year-old. While a loss of current coping strategies may cause a person’s behavior to resemble coping strategies (or lack there of) from an earlier period of development, their chronological age doesn’t change and they may or may not retain other capabilities associated with their present stage of development.
So to imply or assume blanket regression to an earlier age is inaccurate.
A better analogy than regression is that of the demands of life exceeding a person’s resources.
Imagine a hot summer day in a city. Everyone turns on their fans and air conditioners to beat the afternoon heat, exceeding the ability of the power grid to supply power to all of the homes and businesses in the city. To cope, the electric company might implement a brownout–an intentional reduction of power to each building–or a series of rolling blackouts in which some locations get full power while others get none.
The autistic brain seems to work much the same way when faced with excess demands on resources. There are days or weeks or months when the demands of life are too great and our brains decide to implement a brownout or a rolling black out. Some coping skills or abilities are temporarily taken offline or run at reduced efficiency.
But this loss isn’t the same as a permanent regression or even the same as never having had the skill or coping strategy in question. Most people’s abilities–including the ability to cope with daily life–are fluid over the course of their lifetime. Autistic people’s abilities seem to be especially fluid–at times appearing to advance in great leaps and at other times seeming to suddenly disappear.
Many of the challenges that come with being autistic are pervasive, meaning they’re with us forever. Even if they aren’t active at all times, they still exist and may reappear when a particular coping strategy gets temporarily taken offline because the brain needs to reallocate resources for a more urgent task.
When this happens, an issue that was previously “fixed” can suddenly appear to be “broken” again.
In fact, nothing has been fixed or broken. We simply have very fluid coping strategies that need to be continuously tweaked and balanced. Because a child or adult goes through a period of having very few meltdowns, that doesn’t mean they’ll never have meltdowns again. If something in their life changes, for example the hormonal storms of puberty, they’ll need to develop new coping strategies. And until they do, they may begin having meltdowns due to the mental, emotional or sensory overload caused by the new development.
Being autistic means a lifetime of fluid adaptation. We get a handle on something, develop coping strategies, adapt and we’re good. If life changes, we many need some time to readapt. Find the new pattern. Figure out the rules. Test out strategies to see what works. In the mean time, other things may fall apart. We lose skills. We struggle to cope with things that had previously been doable under more predictable conditions. This is not regression to an earlier developmental stage, it’s a process of adapting to new challenges and it’s one that we do across a lifetime of being autistic.