More on Autism: The Meltdown

Back in May, I promised you I’d try to come in once a month with some more insight into the world of Autism, either from the perspective of having it myself or raising kids who are autistic.  Today, I want to share a bit with you about meltdowns.

Whenever I‘ve complained that I’ve had to deal with my son having a meltdown, I’ve often heard people (who don’t have an autistic child) say something to the effect of, “Oh, don’t you just hate that?  I can’t stand when my child has a meltdown.  He/she can be so spoiled!”

I’m here to tell you, those children did not have a meltdown.  They had a temper tantrum.  As a matter of fact, those parents have likely never even seen a meltdown.  And there is a world of difference.

Kids who have tantrums are usually doing so because they have either heard the word “No” or the word “Go.”

*No, you may not have a friend spend the night.
*No, you may not have another piece of candy.
*No, I will not buy you that toy.
*Go to your room.
*Go finish your homework.
*Go clean up that mess.

Kids who have tantrums are either doing so for the sole purpose of seeking attention or for getting their own way.  They’ve learned from their parents that a tantrum is an effective tool to get what they want.  I’m positive we’ve all seen a child throw a tantrum in the toy section of a store then witnessed the embarrassed parent ask their child to stop (not insist that they stop) and then actually use the toy as a bargaining chip.  (Fine!  I’ll get the toy, but you need to stop crying.)  Then the crying stops as instantly as it started, and the child smiles.  Rarely do we see the parent take the child by the hand and abandon their cart and go home.  Why?  Because that would be an inconvenience to the parent to have to go back to the store later.  But what that scenario just did was teach the child that the next time they want something, if they put up enough of a fuss, they will get their way.

The tantrum is used for the sole purpose of manipulating the parent, whether it be by throwing themselves on the floor and kicking and screaming, holding their breath to make the parent think they’ll die if they don’t get their own way, or yelling something to the effect of, “You’re a meanie, and I hate you!”  Once the goal is met, however, the tantrum ends.  Those kids are careful not to injure themselves.  They’ll follow the parent into another room to continue their show if they feel that they’re losing their audience.  And they’ll often peek to make sure they’re still getting attention during the tantrum.

Meltdowns are completely different.  First of all, meltdowns are only had by people with neurological disorders.  Notice I said “people” not “children.”  Of course, children are people, but while the tantrum is generally only a characteristic of a child, meltdowns are not exclusive to children.  Children with neurological disorders can and do also have tantrums, but for the reasons described above.  But as opposed to a tantrum from not getting their own way, meltdowns are the result of sensory overload.

During a meltdown, the child (or adult) does not look to see if others are reacting to their behavior, nor do they care.  During a meltdown, the person does not have concern for their own safety, and they are frequently injured.  It can take hours for a meltdown to end, and it is exhaustive, not only for those around them, but for the person having the meltdown as well.

As I’ve told you before, my grandparents raised me.  My grandfather wanted to adopt me, but my grandma didn’t want to “take something away” from her daughter by doing so.  I was really the only thing they ever argued about.  My grandma wouldn’t allow me to call her “Mom” even though I wanted to so I could “be like the other kids” who had parents.  But she frequently said that she was my “surrogate mother.”  Actually she was my mother in every sense of the word… until my cousins or half-siblings came to visit.  Because she was their grandma too, I got knocked down to being “only a grandchild” during those visits.

Don’t get me wrong.  I loved my cousins and couldn’t wait for them to arrive so that we could play together.  But once they got there, things changed.  Suddenly, I had to share my bedroom.  I had to go to bed when they did at 8:30 instead when I normally did at 11:30 when my grandparents went to sleep.  I had to eat whatever they had for dinner.  And worst of all, I had to share my grandma, the only mother I knew, with them.

My aunt and uncle didn’t help matters.  As far as they were concerned, I got stuff all year long that their kids didn’t get from my grandparents, so their kids deserved the grandparents’ attention as well as any tangible items they might give.  If they came to visit for Christmas, they’d bring their kids’ gifts and a couple of token gifts for me.  Grandma, however, would buy us all the same stuff so that it wouldn’t appear that she loved me more.  So they got tons of toys, and I didn’t.  And not one of the adults could see that it wasn’t fair to me because I didn’t have a mom or dad of my own to give me toys or hugs or love.

On Thanksgiving and Christmas, I hated the food.  I wanted a peanut butter sandwich like I had every other day.  (Creamy not crunchy, no jelly, white bread, crusts cut off, cut in three triangles.)  But I wasn’t allowed to have peanut butter on holidays.  On holidays, we ate at the dining room table (when we normally ate on TV trays in the living room), and we used different dishes.  The house was decorated differently. There was different music playing on Grandma’s record player.  If we had company, they inevitably prodded me with, “Rachel, what’s wrong with you?  Why aren’t you eating your turkey?” or “Here.  You need to try some of this casserole.”  Being singled out like that and told that I wasn’t normal for not wanting the yucky-looking food only made matters worse.

Autistic people need routines.  So even the holidays which should be exciting are sources of great stress, and for reasons described above, I would always have a meltdown every Thanksgiving and Christmas.  There was too much change.  Even my regular television shows were different on the holidays.  Everything was different.  My grandma just got embarrassed at what she thought was me having a tantrum and acting like a spoiled brat, and as such, she’d just yell at me or spank me, which only made it worse.

Looking back, even now, I remember the very different feelings between those meltdowns and the less frequent times when I’d have a tantrum to get something I wanted.  With a tantrum, if I got what I wanted, I was suddenly happy.  If I did not get what I wanted, I kept up the façade of being upset until I realized it was getting me nowhere.  But with a meltdown, I felt like I was coming undone for hours.  There was a big buildup before the boiling point, and it took a long time to come back down afterward.  My emotions were on high.  I was also frustrated that nobody understood why I was so upset, which only made me more upset.  It was usually some source of built-up stress that brought it on, and the stress was worse once the meltdown started.  There was no turning it off.  As an adult, there are times that I get those same meltdown feelings.  Of course, I know now that it’s inappropriate for me to cry, kick, scream, etc., in public, so when I feel a meltdown coming on, I generally try to go somewhere by myself and avoid people until it’s passed.  And generally, it’s still brought on by some combination of stressors that might not even seem problematic to other people.  But they are very real to the autistic person.

Autism-

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38 thoughts on “More on Autism: The Meltdown

  1. Another fascinating insight into a world I do not know. Are you ‘following’ or being ‘followed’ by Farmerfarthing.wordpress.com? You have so much to share. If I’ve got the address wrong you’ll find her (Samantha that is) on my Facebook friends list. Great post.

  2. Very powerful writing, and for me very educational. To get this first hand makes me think more about it ~ I’ve read about autism but your writing has a deeper vein.

  3. Too bad more adults don’t understand the difference between tantrums and meltdowns. I learned about managing tantrums from babysitting a 3-year-old named Carl during my first pregnancy. I took him to the park in the apartment complex where we both lived, and of course he pitched a fit when ii was time to go home. I said, “Fine,” and got up to leave. At about 5 paces away the screaming was throttled, and at ten paces I turned around to look. Carl was following me, but when he saw me turn around, he flung himself on the ground again, and screamed and kicked some more. I started walking again. “Lather, rinse, repeat.” By the time we got home, he was screamed and kicked out, and ready for lunch and a nap.

    I cured public tantrums in my kids by saying, “Louder! Louder! Not enough people are looking at you!” That shut them up, and in the future, if one of them got whiny, all it took was for me to point at the kid, and he or she would quit, like flipping a switch. Other people in the checkout line would ask, “How did you do that?”

    When I was out shopping alone, I would intimidate other people’s misbehaving children in a similar way. I’d catch the kid’s attention and say, “I’m on your mother’s side.” Eyes would bug out, the trap would shut, and the mother would finish checking out in peace, while the former noisemaker watched my every move – it was hilarious. When their cart was packed and the mother had paid, I’d catch her eye and say, “You’re doing a good job, Mom.”

  4. “Autistic people need routines.”
    That is what I am learning with my husband. I used to think he was just being arbitrary, but now I see it is important. I am a laidback kind of gal, and it goes against the grain to have rigid schedules. He has been willing to bend a bit if I say I will be ready within a defined time such as “I’ll be ready between ten and ten-fifteen.”

  5. That was awful for you, Rachel. The change of routines would have happened, though, even if you were one of your cousins coming with your aunt and uncle to visit grandma and grandpa’s house. It wasn’t specific just to you and them … well, to you it was, so I’m losing grasp of the point I was trying to make. Anyway, yes, I think the autistic meltdown is far worse than the pouting tantrum for all involved. Thanks for sharing.

  6. Interesting post. My older brother doesn’t have meltdowns, he has temper tantrums. I’ve been hit and screamed at by him many times in our teen years, since I took on the role of “mom” after our parents split, because I enforced the rules and he didn’t always like it.

    But it’s not that he was trying to manipulate me. I think that’s a very misconceived version of a temper tantrum. He was throwing a fit because he wanted to do something and he couldn’t understand why I was telling him no, and worse of all he couldn’t express himself in words. Just like many children. So he’d yell, and sometimes hit me, but it wasn’t a meltdown. He was unhappy and couldn’t express himself the way a normal 18 year old can.

    I get what you’re saying in this post, but I disagree that only people with neurological orders have meltdowns (I’d like to see a medical study). I get them more than my brother and I am by no means autistic. I don’t have a neurological disorder unless you count my anxiety, which no one around me does. Autistic people are not really that different than other people, and things that are real to them can also be real to people without autism. They just present in different ways.

    • Thanks for sharing your opinion. If you’ll Google “tantrum vs. meltdown”, you will find numerous results that delineate the difference. Best of luck to both you and your brother! 😀

  7. Hi Rach! Thanks for such a great post. Im learning a lot from you which in turn helps me understand Carys.

    In this case, I think there are 2 seperate issues going on which combined in your mind, and which I quite understand. The unfairness of the way you were treated for not having parents, like all the other ‘regular’ kids, and the change of routine which came with holidays and family visits. Gosh, it could have been so easily remedied, if someone had stopped and considered the child (you) for a moment, and not themselves.

    Your grandma was clearly a very loving and caring woman, but such a need to be seen as ‘fair’ in spite of your circumstances seems strange and out of kilter to me. But I know that like the rest of us, she is only human and tried to do her best for everyone.

    Im guessing you werent diagnosed by then? Or maybe enough just wasnt known? Either way, it seems to me you had it tough as a child, and not just because of the autism. I hope you look at all you’ve achieved and feel proud, because you did it mostly by yourself, and it cant have been easy.

    Xxx to you! I love reading tbese posts so I hope you have lots more to share in the future!

    • Hi, Ali. You’re right, I was not diagnosed until I was an adult. But looking back, it answered SO many questions about how I felt “abnormal” during childhood. And yes, the grandma parents a LOT different than what I would do. LOL! She was always so worried about how she looked to everyone else, she didn’t realize how she looked to those closest to her. I’m glad you’re finding these posts useful. 🙂 Please hug Carys for me. 😀 xoxo

  8. AAwwww! I’m sorry you had a tough time with having to share your grandmother. My grandmother raised me as well and I had a cousin who lived with us too. When our other cousins visited, I was left out. But, I was the only girl. Then again her kids (my grandmother’s) lived with us as well. It was always hectic. I miss my grandmom a lot. Your grandma truly loved you! A lot of people didn’t have that growing up.

  9. I work with people who have Aspergers and Autism and so many of the challenges we face could be easily lessened if there was just a little more understanding about what that means. Less of the ‘aah bless’ patronising factor and less labelling of everyone would help (I have never worked with one person the same regardless of their condition, illness, diagnosis, mood or age.) Meltdowns can be scary, from the powerlessness you feel to help and through concern for the safety and wellbeing of the person going through it. Key is talking about the triggers and stressors, then putting together plans to help avoid, negate or deal with them in a different way, where possible. Your strategy is great Rachel and it is inspirational to hear you have developed a way to lessen the impact on you and others around you. I can learn from that and try to encourage the awkward and wonderful and weird and unique people I work with to do the same. And by that I mean my work colleagues, not my autistic clients. Keep sharing Rachel, it does make the world a better place. I specialise in finding work for people with autism and helping them keep, maintain, progress and be happy in their chosen careers. Above all, social integration and understanding us the source if most work difficulties- rarely, if ever, is it intelligence or ability to do the job.

  10. From your lips to God’s ears…no to the public’s ears hopefully. As a nurse I would felt driven to distraction by other people talking often rather loudly (because clearly they as the ultimate authorities on children had to be certain the mother and any other people nearby would hear. Like trying to start a mob.) tthat when their kids did that this or that was the answer. Or if they “wacked the kid enough they wouldn’t have those problems.” Literally in those worked. WHo wacks a kid? You wack a mole (the game), you don’t wack a person. Not that I am adverse to corporal punishment if the young child is in danger or in some cases when it IS a brat being a brat- a mean to someone else brat. I know that is receiving frowns and that’s ok., A spanking is a workl apart from abusive beating on someone. It is explained done in a calm manner, not trying to make the child suffer. I rarely ever had to do this with my kids when they were young. And I do think SO many parents don’t get the sensory overload- because even in children and adults who do not have autism they can and do have a sensory threshold. They can also have a reactive meltdown to something they are unable to understand in that moment- not the tantrum type- but what occurs in grief, in seeing something horrific. You have a beautiful understanding. Beautiful and autism are not often used together. But what I learned in being with diagnosed people could fill the deepest well. How they see the world from a different perspective may seem too restricted to some, but they see the minutia. Things others just fly through and have no appreciation for. They feel to unbelievable levels for some- which can be both beautiful and tragic. If people took the time to realize that reality as they know it is in fact their reality- their perspective- and we each see our time, our world, our experiences through our own eyes. Doesn’t make anyone’s better or worse, or right or wrong. Sadly often the supposed “normal” people can demonstrate the most awful of responses, the most inappropriate and cruel without even seeing when they are in fact the ass in the picture. oops… sorry…must luck around for that filter of mine- keep misplacing it.
    Thank you for your insights. I do believe in them you change all of our worlds . Your gift of writing, communicating, is a treasure.

  11. Great insight, Rachel; and very close to my heart. As I have said, previously, I have a number of acquaintances with autism/Asperger’s and getting to the root of the tantrum/meltdown conundrum is both fascinating and frightening.

    I’m particularly interested in this because in two cases there is a query regarding autism/Asperger’s/PTSD, coupled with childhood tantrums that have been exaggerated by poor parenting, leading to the children being raised by their grandparents. Working out the difference is a work of scientific art!

    In a situation such as yours, I think it is especially important to treat the “cared for” grandchildren as if they are natural children. And, although there is obviously a huge age gap between them, good communication can lead to the natural children starting to accept them as late siblings, which is a tremendous help to the caring grandparents.

    Thank you, again for this insight.

    • It’s an awkward situation for everyone, I think, when grandparents raise a child for a parent who is still alive. My grandfather wanted to adopt me and disown my birth mom but my grandma wouldn’t hear of it. My Aunt & Uncle were a bit jealous, but then they ended up raising two of their own grandchildren and saw the other side of things later.

      Adding my Aspergers to the mix just made it more difficult, I’m sure. Both of my children are also Aspies, and while my son’s behavior is “textbook” it’s not as easy to tell that my daughter has it unless you know her very well and know what to look for.

      Thanks for commenting. 🙂

  12. Another excellent piece of writing, that everyone ought to read, as it clears up a whole lot of misconceptions, about tantrums and meltdowns. Too many simply don’t know the difference, or will gladly give in all the time, just to avoid a problem. – Best, katlnhat or Marilyn in real life. 🙂

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