Happy August to all my colleagues, team mates, friends, and fellow autistics! 

I am still catching up with the move across Japan.  It has taken longer than I thought to settle in; however, I can already tell the benefits of the move will far outstrip the stress I feel with every new change.  I now have a house with things to sleep and sit on, a place to keep all of my food and cook it, a place to wash and store my cloths, and so, I am fortunate.  Eventually all of the other things will fall into place.  (Note to self: You need a can opener to eat tonight.)

I am still researching the question, “If not ABA, then what program should we use to ‘treat’ autism?”  Let me tell you, readers, many of you will not like the answers I am discovering based on preliminary (and not yet complete and/or published) research articles; which is: Don’t treat or cure autism.  The research I am coming across is indicating that autism is not treatable, as such.  It is a neurological condition that creates, or is often clustered with, or is frequently co-morbid with (there is no firm language here, yet, friends) other things that would require assistance/treatment in order to make living in this world a bit easier.

In other words:

  • Don’t treat autism. Treat and/or develop strategies to overcome the auditory processing issues that can occur for some people on the spectrum. 
  • Don’t treat autism.  Treat and/or develop strategies to overcome the sensory processing issues that can occur for some people on the spectrum.
      
  • Don’t treat autism.  Treat and/or develop strategies to overcome the communication issues that can occur for some people on the spectrum.  No, I am not speaking to ‘giving a child their voice,’ Because not everyone has verbal communication.  This is not only ‘ok,’ but normal and valid.  We all communicate in our own way and we need to find a way to ‘speak with one another’ that does not inconvenience or make any one of us work harder than any other of us has to to accomplish that same task.
  • Don’t treat autism, leave it alone.

I will continue to research this topic and provide the asked for and expected peer reviewed evidence for this position as I find it.  I expect to hear a lot of conversation regarding this position and I welcome it, because we grow when we share our thoughts and ideas.

That being said, the topic of this month’s blog is:

The Difference Between Meltdowns and Tantrums

Take a moment and imagine if you will that you are at a grocery store, and there in the line in front of you is a child that is beginning to ‘pitch a fit.’  Her mom has asked her to put her item on the belt and she has said “NO!”, loudly.  Upon further request from the cashier to place her item on the belt, she screams, throws the item, covers her ears, curls into a ball on the floor and dissolves into screams and tears.

The cashier makes a comment about her being spoiled, and you feel like this child is making an unexpected over reaction to a basic command.  She doesn’t mind, she is non-compliant.  She is probably going to continue on until she gets her way.  The child’s mom is given some very hard looks and faces the judgment of those around her for her obvious lack of parenting skills.  She may even get advice from well-meaning people about how to ‘handle’ the situation.

What a naughty child, what an incapable parent, what an imposition on your shopping experience…right?

Well, no.  Not always.  Maybe not this time.

It has become so prevalent to view people with autism as spoiled, entitled, individuals who throw tantrums in public that a few major news outlets have gone so far as to label those in the political sphere that perhaps speak out loudly and publicly as ‘socially autistic.’  Let’s just take a moment to absorb that message shall we… the stereotype of the ‘tantruming’ autistic child is so prevalent and misunderstood that the term autistic has been used to describe the perceived misbehaviors of adults on public media to shame them.

An autistic individual may (not all of us, but many of us) have sensory processing difficulties. If you read last month’s blog about the necessity of stimming.  you might remember the driving visualization that described a bit of what sensory overload might feel like.  I include another visualization for you this month. One that I use to describe sensory overload to people who have never experienced it.

Imagine you live in a house.  You are not able to move out of this house.  It is yours forever, that can’t be changed.

(“But Sophie, this house is purple and I prefer green, but housing told me I don’t get a choice and I should be happy I am blessed with a house at all!”  I know, I’m sorry about that; but, none of us gets to choose our house.

Now, in this house, the only lighting is bright florescent bulbs that flicker randomly, have dark spots that travel up and down the bulb randomly casting shadows when they do, make a high pitched buzzing sound, and that seem to not be logically connected in any meaningful way to the light switches on the walls. (e.g. flipping the switch in the living room may or may not turn on or off the lights in the living room, or the lights in another randomized room in the house, or may not have any affect at all.)  The floor of this house kind of buckles in waves that go up and down or side to side in random intensities that will knock you off your feet if you don’t focus on it intently.  In addition, every room has ten televisions turned to different and changing stations with different and changing volumes. You have no idea where the remotes are to any of them and there are no obvious buttons to control channels or volumes.  Every room also has about five radios that have the same behavior as the televisions.

Stressful? You bet, but there is one more thing you need to know about this house…

The doors do not always open on the same room.  Sometimes, you open the door to the room you woke up in and it’s the bathroom (thank goodness because the bathroom is a good first room to have when you wake up) but, sometimes, it opens on the kitchen, or the front door.  (Not the best door to have open on a busy street when you need to pee, have had no coffee, and are still in your jammies.)

Now, you have learned that if you wake up at exactly 7:01 a.m. and listen to the second radio, and look at the news on the third television, the light switch in your room will turn on the light. You have learned that if you turn on the light and wait for the floor to buckle up and down twice and shift side to side three times, that if you open the door, it will be the bathroom. That if you follow a similar routine from the bathroom (Let’s not be detailed about bathroom routines shall we) you can open the door to the bathroom and find the kitchen, and make coffee (the world needs coffee), and so on throughout the day.

But, if someone with strong perfume and a make-up foundation line that ends strongly at the chin and does not match their actual skin color (which, in and of itself, will need some time to process. I mean, who even is she? Did someone chase her down and spray her with perfume against her will? Is her nose broken, has she lost the ability to smell? Is she color blind? Perhaps she just needs a make-up consultant, should you give her the contact to yours? You may have an extra blending sponge that could help with that, would it be rude to offer it to her….) opens your door at 6:59 a.m. and tells you to hurry up because we have to get in a van right now and then talks through the 7:01 a.m. time frame and everything cascades.  What door is the bathroom now?  You need to pee, your teeth feel like moss, and you have no idea where or how to get your coffee or clothes, and now you are being grabbed by the hand by an overly-scented and underly-sensitive-to-your needs person who rushes you out of the house while chiding your lack of appropriate clothing.

OH MY GOSH!!! 

If things continue like this, for example, if the strongly scented lady (Seriously did the bottle break over her this morning?) informs you that the trip we are taking is three hours long with no stops and you are to give a talk about your life to total strangers, you may sit down and refuse to go.  If you are then physically compelled to get up and get in the van, you may or may not be responsible for the defensive moves your body makes in a full blown panic attack to protect itself, after all what kind of uncivilized people don’t go to the restroom or have coffee before a three hour van ride?

As autistic individuals, we perceive the world differently than most, and to many of us the world is very like this house. Unpredictable, uncontrollable, and uncomfortable. So we learn how to cope, and most of us do a great job most of the time. Sometimes though something happens and everything sort of crumbles. Because I don’t care who you are – nobody likes to go to a conference to deliver a speech about a topic they haven’t had time to research after a three hour van ride without having used the potty, gotten dressed, brushed their teeth, had coffee, and, at least, glanced over the slides.

“But Sophie, are you suggesting that autistic kids are actually little angels that never have tantrums, and that we should go out of our way to treat every interaction like we have encountered some poor overworked woman who just needs the bathroom and a coffee simultaneously?”

No, no, I’m not. Autistic children can and do have tantrums, just like neurotypical kids. Tantrums are actually developmentally normal. So how can we tell the difference so that we can treat each case appropriately? Hopefully, I can lead you to some places where you can get the tools and develop the skills you need to help yourself, and others if that is your path.

There are two sites with very helpful articles on this topic:

Your Autism Tool Box: Tantrum vs Meltdown 

olliBean: Autistic Meltdown or Temper Tantrum 

I strongly suggest that you follow the links and read about this topic in the full detail these authors provide; because, though I am long winded, I am only glossing over their fantastic information.

How Are Meltdowns and Tantrums the Same?

  1. Both tantrums and meltdowns indicate a lack of skills.  Even though the particular skills in each situation is different, the result is similar in each.  The individuals do not have the skills in either scenario to successfully navigate the situation.
  2. Both tantrums and meltdowns are a form of communication.  When people lack the vocabulary or abilities to navigate their situations, behaviors become their communication.
  3. Both tantrums and meltdowns are misunderstood.  Whether your child is having a tantrum or a meltdown, they are not ‘bad kids.’  They need support and help to gain the skills they need to navigate their world.

Characteristics of Temper Tantrums

  1. Temper tantrums are behaviors to get attention.  They have an end game (e.g. give me what I need/want).  They has a goal oriented purpose.
  2. Tantrums need an audience. The function of a tantrum is to get attention.
  3. If a tantrum is not given attention, or if the child is given what they want or can be reasoned with, they usually stop.
  4. A tantrum will not hurt your child.  The child remains in control, they may throw themselves on the floor, but they will do so in a safe way. They are ultimately still present in the moment and in control of their actions.

Characteristics of Sensory Meltdowns

  1. A meltdown is a reaction to being overwhelmed.  It is a neurological phenomenon, with a distinct lack of the control found in tantrums.
  2. A child experiencing a meltdown will be unaware of attention and they will likely not have the energy to seek such attention.
  3. A sensory meltdown will also not stop if you ‘give in’ to the child.  You cannot offer a child anything that will stop a meltdown.  Meltdowns are caused by a buildup of sensory overload.  Like a volcano, the pressure builds until it becomes too great and it blows.  You can’t put the lava back in the mountain, not even with ice cream.
  4. A melt down is fight or flight mode.  It is a loss of control and awareness, there is no thought or control.  They might be putting themselves in danger. They are not present in the moment, they are not in control.
  5. A meltdown cannot be stopped, you cannot ignore it, or give a preferred item to stop it.

There are several videos available to describe the differences

Amethyst with Ask an Autistic has a good description of meltdowns and how to help after a meltdown: gives a parents perspective on tantrums and meltdowns: 

Sara with Agonie Autie has a great video that describes meltdowns, what you can do for your person, or what you can do for yourself during and after a meltdown. 

Please, be careful when looking up meltdowns and tantrums online.  Some people, who we in the autistic adult community call ‘autism martyr parents’,  post videos of their kids in meltdown without posting helpful information at all. This is not a positive thing for the children or for developing strategies to cope with meltdowns.

So, though both tantrums and meltdowns share similar traits, in general, a tantrum is a controlled, attention driven behavior with an endgame. While a meltdown is a neurological response to sensory overload that lacks direction and control.  If you need help with averting tantrums, there are plenty of good places to research those.  If you find some kind and effective strategies, do check in and share them, I could always use some good strategies from multiple sources.  But, as this is a blog about autism, I will focus more on what to do about meltdowns.

One of the best things to do for meltdowns is to try to avoid them in the first place.

  1. You could communicate with people and set up a schedule in advance for errands, or expectations. (e.g. ‘Four stores then home,’ or ‘I will write the last half of my blog and then go for a swim.’)
  2. Make sure to communicate that if, at any point, there is a need for someone to take a break during the process or end the process early, that it’s ok.  It’s not going to get them in trouble, or make everyone’s life harder.  Autistic individuals are often made to feel that their basic needs are too much for normal people to handle and that they should mask their needs in order to get along in this world (e.g. ‘I know we said four stores, but I noticed the perfume counter guy sprayed you with perfume without asking and you look like you need to deal with that.  Will you be ok if we take a small break or do you need to go home and deal with that?’).  I really do understand that you may have a lot on your plate and feel like you need to at least get the groceries done so there is food in the house, but pushing anyone past their ability to cope in the world will not actually save you time, and will definitely take up more of it that you don’t have. 
  3. Watch out for signs of sensory overload and communicate them, as not all autistic people are able to keep track of their own reactions to things.  Here are twelve (12) signs of sensory overload:
  • Loss of balance and orientation
  • Child repeatedly refuses activity and/or item
  • Skin flushes or goes pale
  • Hysteria and/or crying
  • Stomach issues
  • Profuse sweating
  • Increased Stimming
  • Echolalia
  • Agitation and/or anger
  • Person enters fight or flight
  • Person verbally says “Stop!”
  • Person physically covers their ears, eyes, nose, mouth, and/or pulls on clothing

If any of these occur while you are working with a child, or being with a person please stop the activity.  A meltdown is the person’s behavior communicating clearly to you that, ‘This activity is too much for me to handle!’  Please do not attempt to push them a little further or see if they can “handle it.”  Instead, write the trigger down somewhere, help guide the person through the meltdown, and then, at a later time, go back to your notes to see where adaptations needs to be made.

Sometimes, though, you will not be able to avoid a meltdown. Here are some strategies of what you can do to help:

  • Calm yourself first and then respond.  Individuals say things in fight or flight that may be hurtful, they may lash out in their rush to get away.  It is not going to be easy to keep yourself together, but this is not a tantrum, they are not a bad person, it’s really not about you.  Be calm, and proceed.
  • Help get to a safe place.  The most important thing you can do for a person in meltdown is help them get somewhere safe.  This may take some creativity and some fortitude when people give you those judgey looks.  But keeping safe is really important.
  • Keep your directions short and clear.  Verbal processing, well, honestly – any – processing, is going to be difficult in the midst of a meltdown.  If you need to communicate, keep it simple.  Texting or writing down Yes/No questions helps many people in the midst of a meltdown.
  • Keep any accommodations at hand.  If someone has a weighted vest or noise cancelers make them available.  Never force these tools onto anyone.  Using force may actually backfire; that said, having them available may help.
  • Reassure them that they are ok, they are safe, and that you love them  – if that is appropriate to your relationship.

 

Meltdown aftercare:

Meltdowns are exhausting and scary.  When you realize you no longer have control over yourself, it is a very disorienting feeling.  Meltdowns can be very disorienting, and, in fact, humiliating.  After a meltdown, an autistic person is going to be tender for a bit.  Some of us like to be left alone to put back the pieces, some of us need cuddles and reassurances.  Right after a meltdown is NOT the time to do a review of the process to see where the breakdown occurred and strategize how to avoid future meltdowns.  There will be time for that valuable process later, but not in the moment.

**I know I have covered a lot of things, and perhaps you are tired and all done with this topic.  If you have the energy, though, there are just a few more things I would like to cover. If you need a break, though, book mark this and come back to it at this point later.  It is important that I write these things down while they are in my mind or I will forget, and they will blink out of existence for me and thus will never be called into existence for you.**

Delayed Effect Meltdowns

Some of my parents or adult partners of autistic people may see a lot of meltdowns at home.  The school or work friends might actually express surprise that your loved one behaves in this way.  It is natural to think that maybe the person just doesn’t like you, or that you are doing something wrong.  But more than likely, you’re seeing this happen more often because you are the safe person, the trusted person that they can fall apart near and not lose friends, be expelled, or lose their jobs with.  This is sometimes called the delayed effect.

AIW Consultancy Autism, Inclusion and Wellbeing has a video that describes this nicely and has some strategies to help overcome this.

Silent Meltdowns/Shut Downs

Sometimes, you may see an autistic person zoned out or specifically ignoring you while engaging in their stim of preference. There could be several reasons for this.

  • They feel overwhelm creeping up on them and are trying to shut out the stimulus to remain regulated. This is not a meltdown per se but a strategy to try to avoid one.
  • They are in the middle of a meltdown and know for a fact they are not safe or cannot get safe.  This is a more adult strategy.  If we think of a meltdown as an explosion, then this is an implosion.  Typically seen in older people who have had negative experiences during meltdowns, perhaps in fear of losing employment or being entered into mental observation clinics.

If you feel able to provide assistance during shut downs, the strategy is the same for meltdowns.

The Mighty has published a good guide on how to support individuals during meltdowns and shutdowns. I recommend taking a look at their page

As I mentioned previously, autistic individuals are not always the best at self-monitoring stress and may find themselves in meltdown modes unexpectedly.  Mona Delahooke has written a fantastic article exploring this topic and a treatment that she has found promising is stress tracking wearables to help let us know.  I find this fascinating and, indeed, am curious to try it myself.  If I do, I will be sure to let everyone know how it goes.

Thank you for your continued support and interest.  Until next month, dear readers.