Understanding Meltdowns and Autism

“Beneath every behavior is a feeling. And beneath every feeling is a need. And when we meet that need rather than focus on the behavior, we begin to deal with the cause and not the symptom.”

– Psychologist Ashleigh Warner

overwhelmed in light
The best royalty free image I could find for “overwhelmed.”

I used to have daily meltdowns. There was a time in early elementary school where everything would get too overwhelming, and I’d lose touch with my body and everything would break; I would sob, and scream, and hit myself, and collapse on the floor as everything around me spun in confusion.

It’s heartbreaking to hear parents talk about their kids who have daily meltdowns for several reasons. The biggest reason is because I’ve been there and it sucks, so I feel for those kids. Another one is that a meltdown is a sign of distress, and so something is obviously not set up well for those kids. And lastly, it’s because it often accompanies a lot of misunderstanding surrounding the meltdown.

I’ve been putting off writing this post. Meltdowns are some of the tougher parts of autism and there’s nothing glorified or beautiful or sexy about them. They’re not a fun thing to write about. I’m also giving away some personal information explicitly for the purpose of educating on this topic. But I’m ready to do that to bring understanding.

What is a meltdown?

How would you define a meltdown? It’s a little bit tricky, I have to admit. Essentially, I’d say that a meltdown is a neurological (and very messy) “hard restart” that occurs when an autistic person (or perhaps anybody if they were pushed far enough) is too overwhelmed, so the brain can’t process all the information that’s being thrown at it. So, in a desperate attempt to re-regulate itself, it melts down. I’ve also heard it described as if the brain were like a filing cabinet, and meltdown is where everything in it has been dumped out onto the floor.

Meltdowns can be caused by either sensory or emotional overload or a combination of the two. And honestly, emotions are “felt” in the same way that senses are felt, because emotions happen when a specific chemical is picked up by a receptor which then sends a nerve impulse down a sensory pathway. Emotions can be considered sensory in this context.

Some people recover quickly from meltdowns, for others it may take days or even weeks for them to fully recover from a meltdown. Meltdowns can have differing degrees of severity depending on the severity of the overload; there isn’t just one type of meltdown. Depending on circumstances and person, common characteristics of meltdowns may include (but are not limited to) lots of stimming for re-regulation, repetition of scripted phrases, screaming, loss of ability or severely impaired ability to speak, inability to move, aversion to outside stimuli, loss of balance, throwing things, etc.

If it sounds terrifying, it’s because it is, even more so for the person experiencing it than for the observer. It’s a complete loss of control, which even for autistic people that often have a tenuous connection of body and mind, is very scary. It’s also very embarrassing, but there’s little that can be done about it if it’s not averted in the first place.

One thing that a meltdown is definitely not, however, is a tantrum. I’ve seen people use the terms interchangeably, or refer to tantrums as meltdowns or meltdowns as tantrums. But they’re not the same thing. Not even close.

A tantrum is essentially where someone (typically a child, though there are plenty of adults who still throw tantrums) intentionally brings negative attention to themselves in order to get something they want. The classic example would be the kid who throws himself on the floor because mommy and daddy won’t buy him the sugary cereal.

A child having a meltdown is absolutely not throwing a tantrum. A meltdown is an involuntary neurological event. A meltdown is more analogous to a seizure, not to a temper tantrum. We need to stop viewing a child having a meltdown as if they are throwing a tantrum and instead look at it as if they were having a seizure.

This isn’t as crazy an analogy as some may think, either. A seizure is a sudden surge of electrical activity in the brain that causes a variety of sensory, movement, and cognitive symptoms depending on its location within the brain. A person cannot control when the seizure starts or ends, nor how they act or feel during the seizure, and often there is some period of recovery needed after it ends. A meltdown is similar in that the brain’s  ability to process input is overloaded which leads to an involuntary cascade of neurological events as the autistic person’s brain attempts to find equilibrium again. In fact, they can present so similarly that in some cases people having frontal lobe seizures, which can involve extreme emotions and outbursts of fear, sadness, or anger, have been mistaken for autistic meltdowns or other events before testing was done that found the correct diagnosis. There is also current research being done to better understand the connection, since as many as 30% of autistic people also have epilepsy.

Sad child alone
A stock photo of an upset child.

In other words, meltdowns are not a behavior problem. I’ve heard stories of parents either trying to reward their kids for not having meltdowns or (even worse), punishing their kids for having meltdowns. Both of these are terrible strategies as, again, meltdowns are involuntary and largely unforeseeable. They’re not something someone chooses to have. And when they happen they’re pretty much the epitome of suck, so I’m not sure why someone would want to have one either.

I’m always cautious whenever I use the word “behavior,” because I don’t want to in any way bring up images of or promote “behaviorism.” Behaviorism is a philosophy you see in a lot of therapies and parenting strategies. With it, everything is reduced down to a behavior that must either be corrected or promoted. No attention is payed to underlying causes, which can become very counter-productive. When you ignore underlying feelings and needs, you’re working with symptoms and not causes. If you’d like to read more on this, I’ve written about it here. We must not take a behaviorist approach when thinking about meltdowns. While a behavior is technically defined as a response or responses an organism gives when faced with a stimuli, and under this definition a meltdown is behavior, so is breathing and blinking. Your heart beating is a behavior. A meltdown is like these other things, in that it is absolutely not a voluntary thing that someone has chosen to do.

Now, autistic children will also still throw tantrums, because that’s what children do. Every toddler does that at some point. And for many people, a meltdown and a tantrum might look somewhat similar. However, it’s still important to separate the two and not confuse them. A good way to tell if you’re dealing with a meltdown or a tantrum is simply to walk away and observe. If they can simply stop almost immediately, it’s likely a tantrum. If they keep going even in the absence of other people, that’s a meltdown. Context can also be helpful, but do your best to not confuse a meltdown and a tantrum. Lastly, it’s also possible that an autistic toddler starts off throwing a tantrum, but then has a meltdown because of the emotional/sensory overload of their own actions or others reactions. However, they are not the same thing, don’t treat them as such.

Preventing Meltdowns

Because of the nature of the meltdown, perhaps the best way to deal with meltdowns is to simply do your best to prevent them. Knowing and recognizing one’s sensory needs are important to stay well-balanced and regulated and avert potential meltdowns. However, when you’re autistic and the world is a constant sensory assault, the unfortunate part is the meltdowns are inevitable. Some autistics have expressed that they are able to delay meltdowns a short time, but ultimately the more one delays the worse the meltdown will be. In a sense a meltdown can be good and cleansing in that it can reset the brain after being badly overloaded. But they’re very painful in the moment.

Meltdowns occur because the person they’re happening to is in sensory distress. If there’s someone who is having very frequent meltdowns it’s because something in their environment is simply not meshing with their neurology, and they’re getting very overloaded very frequently. As such, if this is the case for you or someone you know, I suggest you take a look at your schedule and see what’s causing the most issue. Something I see so incredibly often is parents saying something like “We just put little Johnny in 15 more hours of therapy, and and now he’s having daily meltdowns. This wasn’t happening before. Should we do more therapy?” The answer to that last question is an emphatic NO, by the way. The meltdowns are increasing because the addition of therapy is too much, and they’re now getting overloaded much more frequently. This is just one example.

That being said, I’ve also seen quite a bit of misunderstanding of the best way to deal with meltdowns.

How non-autistic people can help someone through a meltdown:

Non-autistic people seem to have a very specific set of things they like to help them calm down or feel better. However, a lot of those things that work for non-autistic people don’t work at all in the case of an autistic person experiencing a meltdown.

A meltdown is caused by an overload of the brain’s sensory/emotional processing centers. Therefore, adding more sensory input into the system is only going to make things worse. Here’s a list of things people instinctively try to do to make a meltdown better that actually usually makes everything way worse:

  • Touching the person experiencing the meltdown.
  • Trying to distract the person experiencing the meltdown.
  • Berating the person experiencing the meltdown with questions (like asking “are you ok?” over and over again).
  • Trying to talk to the person experiencing the meltdown.

All of these strategies add a significant amount of additional sensory input into the system. Now, some autistic people do find very specific kinds of sensory input to be soothing during a meltdown, so I bet there are a few autistic out there who would like a hug during a meltdown. But mostly, doing the above is like noticing that a bucket is overflowing, and then pouring more water in it to try to get it to stop.

For me, the best thing you can do when I’m in meltdown mode is to not do anything unless it genuinely looks like I’m about to seriously hurt myself. Do not touch me. I can’t make that more clear. Do not talk to me. I don’t have the resources to process speech, it’s only making things worse. Do not ask me questions. I won’t be able to answer them anyway, and again that’s speech I have to process. You can be present, but don’t interfere. Be understanding and compassionate afterwards, and don’t dwell on it. Let me move on with my life.

Oh, and this should go without saying but, it is never OK to film someone having a meltdown and then post it on social media. Not for awareness, not even if it’s your own child, not for anything. Would you want somebody publicly posting a video of you in your worst moment on the internet for everybody, including potential future employers, to see? No? Well guess what: that person doesn’t either.

And lastly, I’d like to point out that there also exists a shutdown, which is essentially an internalized meltdown. I will eventually do a post on these as well, but know that some autistic people are more prone to imploding with a shutdown rather than exploding with a meltdown. Both are responses to overload.

I hope you’ve enjoyed this post. I’ve written it to be rather informational, and I’ve spent a few weeks now on and off writing it. Hopefully with this knowledge, everyone can help build a more inclusive and welcoming world of people who struggle with meltdowns.

This post has been modified from its original version in one place for factual clarity.

9 thoughts on “Understanding Meltdowns and Autism

  1. This is a great description (especially about things that can make it worse when people are trying to help). I’m looking forward to your post about shutdowns as that is what more commonly happens to me and having an explanation to share with my family would be helpful (and I don’t feel up to writing one of my own.)

    Liked by 2 people

  2. I don’t believe I’ve ever experienced a meltdown even as a young child, so I appreciate the information coming from someone with personal experience.

    Shutdowns are another story as I do have these. I was going to write “experience” instead of “have” but I think that the way shutdowns manifest themselves in me, I’m devoid of anything capable of experiencing, if that make sense. It’s like a period of nothingness but not of nothing.

    I started trying to write a blog post on it months ago but have not been able very far as it seems impossible to write about something I’m aware that happens to me yet feels more like something I observed in someone else from a great distance and a long time ago.

    I also suffer from migraine attacks which produce symptoms similar to severe intoxication or a stroke, and result in periods of dissociation and depersonalisation, and to be honest I’m not sure if I’m able to distinguish the difference between these and shutdowns as I don’t have enough self awareness at such times to be able to notice precisely what’s happening.

    At least now I have a target to help me complete the post: post my article on shutdowns before Quincy posts his 🙂

    Liked by 2 people

    1. Yay! [about the target and you writing your shutdown post].

      I experience migraines too. The last one I had was this past August.

      And I had another bad one in June.

      The blood vessels don’t go through – or they rush – don’t they Barry?

      Do you develop a kind of external/exterior awareness?

      There is a really cool site about Shutdowns and Stress in Autism by some Dutch researchers and ten years ago I shared it with an Englishman called James who wrote the site That Explains Everything.

      [I think Mel Baggs knew about it or it was somewhere else in the air].

      Like

      1. I have around 15 -20 days of migraines each month, although they often come without severe headache but with severe cognitive issues, which is one reason why I have difficulty distinguishing the difference between migraine and shutdown. As I have alexithymia, I struggle with recognising feelings at the best of times, and usually don’t recognise an approaching migraine or shutdown. Until recently it never occurred to me that I had shutdowns (I wasn’t diagnosed as being autistic until I was 60 – I’m 70 now), but now I’m beginning to realise that sometimes my “switching off” may not be related to migraines at all. My hyper-sensitivity to light, sound, touch, smell etc, seems to increase many fold during a migraine episode, and I suspect that the overload causes some form of shutdown. The combination makes it difficult to know how much is migraine shutdown and how much is autistic shutdown.

        Liked by 2 people

  3. Thank you for writing this. For us NT parents, I need to read things like this. My son is almost 4 and I would say has more tantrums than meltdowns, but it is hard for me to differentiate. Some things are what I expect from a toddler and other things are not. This really helps. My son is going to start ABA therapy soon and I know that will help him and us, but until then all the information you provide in your blogs are incredibly beneficial to me and others!

    Liked by 1 person

    1. I recommend against ABA therapy actually. By very definition ABA is built on a behaviorist scheme, looking primarily to make a child “compliant” (previously via punishment, nowadays via rewards) so that they can be molded into a kid who’s easier to “deal with,” often at the expense of the person themselves. ABA doesn’t teach life skills. In the long run ABA doesn’t help the person in it at all. It’s dog training for people, ABA is actually based on a lot of the same techniques used in dog training.

      Then again, a lot of what’s called “ABA” isn’t actually ABA by strict definition, but rather is only called that for insurance purposes. I know it’s pushed hard, but I recommend you spend your time in something else, like OT or speech, which will be beneficial for your kid for their whole lives.

      Liked by 2 people

    2. I concur with Quincy. I can’t locate the site now, but there was a site that gave some alarming statistics for young autistic adults who had undergone intensive ABA as children. In a survey, the majority of these young adults showed symptoms of PTSD and from one US state (sorry, don’t recall which one) it was approaching 80%. Look for therapies that provide life skills, not “therapies” that train children to perform “normal”.

      Like

      1. Kupferstein H. [2018] in ADVANCES IN AUTISM

        https://www.emerald.com/insight/content/doi/10.1108/AIA-08-2017-0016/full/html [summary]

        https://hennykdotcom.files.wordpress.com/2018/02/aia_evidence-of-increased-ptsd-symptoms-in-autistics-exposed-to-applied-behavior-analysis.pdf [the paper]

        Kupferstein is based in California – where Lovaas first grabbed his stronghold.

        The coverage of post-traumatic stress under the 2013 criteria, Quincy and Barry, was broad.

        Six opportunities for avoidance and thirteen for negative cognitions/affects/alterations in cognitions.

        “Look for therapies that provide life skills”. – so if Jeri’s son enjoys music, for instance…

        I hope your son is safe to show his frustrations and joys to you and all his feelings.

        Hyperarousal is in criteria E.

        Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s