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.