I think, probably controversially, that meltdowns are not abnormal reactions to what autistic people are experiencing.
I believe that some experiences of those with autism are so outside the expectations or experiences of those around them who do not have autism as to be considered minor or unimportant. As a result, we deem the behavior that makes up the meltdown to be overstated or abnormal. But, what if it represents a proportionate or appropriate reaction to the stimuli as experienced by the autist.
Distinguishing between the meltdowns of an autist and the tantrums thrown by an adults or children whether autistic or not, I suggest that if we view meltdowns as a form of self-preservation and self-defense rather than as poor or uncontrolled behavior, they look really different.
Let’s consider just a few examples of events or experiences that may cause a meltdown:
Meltdowns as a Response to Pain
Picture an autist holding their head in their hands, rocking back and forth, maybe moaning, and possibly even yelling. When this happens to me, which is not often, I behave this way because there is something that is causing extreme pain or overstimulation and I am unable to stop it. It may be a physical pain in my head or just the overwhelming amount of information my brain has been triggered to process. Other autists describe their experiences as similar to mine.
Let’s consider just how abnormal this behavior is by contrasting it to the reaction of a neurotypical person experiencing extreme pain. What is the reaction, for example, of a person when they experience extreme pain in some body part – maybe a newly broken leg? Well, they frequently hold that part, their leg, and they may moan or yell. I have also seen people in extreme pain flap their arms around, another behavior identified as characteristic of folks with autism.
We consider that reaction a normal response to being in extreme pain. In fact, I have never heard anyone argue to the contrary in situations which look like standard pain-causing situations. The distinguishing factor of a meltdown seems to be the invisibility of the trigger to the typical bystander or the lack of belief that such a trigger as the one involved could possibly cause pain to a level that justifies the reaction of the autist, when in fact it really does.
Uuummm…so…how are those two things different other than that the trigger is one that is more easily understandable to the average person? I personally would argue that they are not different at all.
Meltdown as a Response to Unmet Physical Need
Here is another example. Folks with autism frequently struggle to sleep or to get good quality sleep. I personally long for sleep and have found that a variety of supplements and pills get me no closer to my goal. My mind runs all night, I toss and turn, and I think and think and think. Sometimes, I actually come up with some pretty cool stuff. Not sleeping, however, over a period of time makes me, most people actually, cranky, more prone to being overstimulated, and finally, pushes me to a loss of control. More than that, if you did not know of my lack of sleep, the trigger may seem invisible or at least not obvious.
I have to say, that I have seen many a sleep deprived neurotypical person lose control, yell at others or become overstimulated. I think the response is maybe an order of magnitude different or possibly more frequently occurring in folks with autism as they can really struggle to sleep. Otherwise, I just don’t see a difference. Sleep is important, and not getting it causes problems. I think if a neurotypical person experienced this type of life long sleep deprivation and woke to the expectation that they be able to function normally in all contexts at some point they would also lose it…because that is a normal reaction.
Meltdown as a Result of Sensory Overload
As a child, my mom wanted me to wear cable knit tights everywhere to “keep my legs warm.” Well, I was not only not cold, but those tights were itchy to the point of being painful, and I would feel those tights on my little legs all day long. They would slip down and need to be tugged back up, and they would snag on things. Really, they were a constant distraction from the moment I was required to put them on until I was allowed to take them off.
I would scream and fight while my mom wrestled me into those tights. To me there was nothing outrageous or disproportionate about my response. Someone was hurting me and I was trying to stop it. I did try to communicate my discomfort, but my mom could not hear me. How should I have responded differently when no one would listen?
Again, let’s come up with an example that demonstrates the normalcy of this response. Have you ever traveled with your kids on a road trip? Picture one of them touching another one repeatedly in spite of requests to stop. What is the result after a period of time? The recipient of the unwanted touch at some point loses it. Why? Because this is a normal reaction to overexposure to a stimulus.
Not buying it?
What if your kiddo asks you every 10 seconds if you are almost there? Yep, that is right. At some point you just can’t take it anymore. This latter example, is so widely known as to be cliché. A loud and impatient reaction becomes normal after too many introductions of the question. We accept that this response is normal because it lies within our experience or expectations whereas a violent reaction to wearing tights is not.
Meltdown as a Result of Food Intolerance
I have written a post about my own struggles with chocolate. If I eat any chocolate, I transform into a fire-breathing dragon. I yell and stomp and eventually lose control of my behavior. Once I have eaten it, I have some sort of reaction and just freak out. To many this behavior is an abnormal response. To me, this behavior is a severe reaction to a food. The trigger of course is the food. The reason the meltdown subsides is that the negative impact of the food intolerance wears off. The time to control the behavior is when making the decision as to whether or not to eat the food. Simple stuff – no chocolate, no food- induced meltdown.
What proves my point that the meltdown is a normal reaction? Well, take bee stings. If you are allergic to bees and one stings you, you will have a reaction. That reaction could range from a rash, to difficulty breathing or, in extreme cases, to death. No one would accuse the victim of such an experience of overreacting because these reactions are normal. We consider them to be physical (i.e. the rash), but with each there is a behavioral component (i.e. itching). We understand that there are people who are allergic, possibly deathly, to bee stings. It is within our experience.
Meltdown as a Result of Unheard Communication and Frustration
I have also been known to lose it when, after stating a need a number of times, I feel ignored.
Taking the examples above, I have tried letting people know when I need, as a result of lack of sleep, some quiet time to relax and re-energize, I regularly communicated that the tights my mother made me wear were horribly uncomfortable, on the rare occasions I accidently ate chocolate, I warned others to steer clear.
(So I was faced with two issues: the need to manage a challenging stimulus and the need to somehow communicate in a way so that I could be heard. Too much!!)
I was communicating my need to avoid the tights, for example, because I did not need them and because they hurt, and I was experiencing extreme frustration that my repeated attempts to communicate a need were being ignored. I felt like I did not matter nearly as much as those precious tights. As a young child I wondered why my mom, who was supposed to listen to me and care about me felt that those tights were so darn important. You know how I handled this slight? I became overwhelming hurt and frustrated and screamed all the louder. I am confident my mom never had any idea why the donning of a pair of tights resulted in such a battle.
Fast forward, as an adult, I understand that my mother’s perspective was that she was taking care of me. That wearing a pair of tights is not a big deal so why was I making it into one? I believe that it was simply that it was outside of her experience or expectation that an article of clothing, something designed to be worn, could cause this level of physical pain and distraction.
A Meltdown Is a Big Response to Something that Hurts in a Big Way
So are you convinced? Maybe it isn’t the reaction that is the problem. Maybe it is the inability of the observer to understand something so outside of their own experience or expectation and the resultant inability to identify or remove the harmful stimulus.
Allowing that a meltdown is actually a right response to a painful, harmful or emotionally overwhelming stimulus or unmet need transforms it from a horribly unfortunate, unexplainable event experienced by caregivers and bystanders to an emergency which requires a CPR-like response, a response that brings relief and comfort to the person experiencing it.
More important, it solidifies the need to employ preventative strategies such as elimination, avoidance, accommodation, etc. If we know something causes someone actual pain, we have an obligation to avoid its introduction. If we know someone has an unmet need, we may or may not have an obligation, where possible to help them meet it depending on our relationship to them.
I just try to remember that all candles melt down a little differently.
If you are an autist and you have ever experienced a meltdown, especially if you have been criticized for having had one, just know there are people who believe that what you experienced was real, it was big, and it was overwhelming. Your courage in continuing to live life to the fullest in spite of these times of trial makes you a hero. I appreciate your strength and determination in managing what many people couldn’t handle.
Please share your stories in the comment section below or in the Forum on this blog! We would love to hear from you!
Meltdowns just may be a big but normal reaction to something she experiences in a big way with Her Autism!!!
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