Things lately have been going excuse my phrase, totally ass backwards with Andrew. I feel like the progress that has been made has been lost. There are so many factors that could be the cause and I spend day in and day out trying to find the exact cause, or reason. But that is just it, there is no reason, since no day is predictable or the same raising a child on the spectrum. For the most part, I blame summer since this is the first official summer that we have dealt with the diagnosis. Last year, we did not know fully know what we were dealing with. We didn’t know that importance of a very rigid routine and schedule. So, after learning that Andrew was on the spectrum we made sure to make that schedule happen. It was easy for the fall with school and all. The only foreseeable problem was going to be holiday break and spring break, but we were going to have that covered so we thought.
Fast forward to current day, ESY, (the extended school year) ended last week and now we have 3 weeks until the fall school year will start. So, I am preparing myself for the meltdown or tantrum train to be making frequent stops here at Wongville.
There have been the times, during the school year when everything for Andrew started to do great. His meltdowns and tantrums were beginning to wane in frequency. He was gaining more independence in terms of daily tasks. Some of the more challenging behaviors began to weaken. Communication and social skills were showing slight improvement. For a few moments I had a happy and focused child. These are the days as a spectrum parent you rejoice for and pray that they are extended.
And then it happened. Andrew started backsliding. It seems like he was (is) getting “more autistic,” starting to regress in some way, or losing his coping skills.
Okay so I blame summer and the the loss of the ability to control routine. But there seems to be more when I can’t find the reason for it. This is the most frustrating part as a spectrum parent, not being able to find a reason “as to why” stuff happens. This is when I become concerned. What on earth happened? Did the autism get worse somehow?
Everything I read suggests that it gets better with age. So, then what the hell can it be?? Well glued to the internet daily, always researching things related to autism, I came across something. Something that made me feel a little better, but how could I be for certain that this was the answer I was looking for? Is Andrew experiencing something called autistic burnout.
While autistic burnout isn’t a technical term, it describes something that many people and parents of children on the spectrum have reportedly experienced.
To understand why it happens, you need to know that it takes a significant amount of energy and effort for those on the spectrum to simply exist and function “normally.” Being autistic in a neurotypical world can be overwhelming enough, but if you’re also trying to “pass” as neurotypical, it can require even more energy, as it’s not natural.
As is the case with anyone, however, long-term energy reserves are limited. Due to stressful events, life changes, or simply trying to “pass” as neurotypical for too long, eventually people on the spectrum can get worn out and develop burnout—a state where they can’t keep going anymore.
So really, it’s not that Andrew’s autism is getting “worse.” The autism was always there, but now he no longer has the energy to use coping skills or life skills to keep the challenges in check.
It has been reported that those with autism experience burnout during periods of change or high stress. And God knows not having his rigid schedule this summer could be a major cause.
With the research I have been doing on this subject, I have found new methods of dealing with burnout include increasing sensory regulation, getting help, slowing down, and saying “no” as needed. I have not started any of these but will when the time presents itself.
So, may he has it and just maybe Andrew is experiencing autistic burnout or maybe he is not. All I know that it feels a little reassuring to find something that fits what he is going through at this very moment. Stay turned…..