It's been five months since Sweet M had a meltdown—a full-blown, no-holds-barred, flip-out sort of meltdown—the sort of episode that the family featured on Dr. Phil was dealing with on a regular basis.
Our lives had become so mellow that we'd actually stopped expecting the phone to ring with calls from her school asking one of us to come and get her. We'd even gotten to the point where we'd occasionally go out without our cell phones turned on.
So I guess you could say that she was overdue.
Her teacher called on Thursday afternoon around noon. M had lost it on the playground, during the lunchtime recess. M's father took the call, and as often happens in these games of telephone, there was, at first, some confusion about what had happened. At first we understood—mistakenly—that M had hit another child.
After M and her father were in-route, on the way home, M's teacher Helen called back to tell me what had happened . . .
M was on one of those playground jungle gyms that has a chain bridge that wiggles when you walk across it. She was on the bridge with some other girls, and she said she wanted to be on it by herself. But they wanted to be on it, too.
I'm not certain, but I think the wobbliness of these chain bridges is very relaxing for her . . . these chain bridges have been the site of other episodes, to be discussed in some future post, but in any case . . .
Alan, M's teacher from last year, who was operating under the assumption that M should get her way (so as to avoid meltdown episodes), told the other girls to let M have the swinging bridge to herself.
But then Helen, M's teacher from this year, operating under the principles they've been using this year—namely that M can't act like she's the only kid on the playground—told M that she needed to share.
Meltdown. In M's world, when two contradictory rules collide and she doesn't get her way, there is some sort of internal chain reaction. Or perhaps it's like in the fictional construct on the old episodes of Star Trek—when matter and anti-matter meet, the universe explodes from the force of the contradiction.
This contradiction of the rules was a particularly troubling case for M because it was not her less-favorite teacher from last year who had issued the "you must share" edict, but her beloved teacher Helen—the teacher who is, in M's mind, the source of all that is good, and beautiful, and just. That sort of splitting (good mommy-bad mommy, madonna-whore, and so on) that young minds of all ages engage in—of dividing the world into good and bad—had just been challenged. Beloved became despised and M was doing what the psychologists would call decompensating and what the nuclear physicist might call fission chain reaction.
And so Sweet M became less sweet and much much much more sour, complete with the screaming and histrionics that we prefer to avoid. She began crying and screaming at Helen—"It's all your fault, it's all your fault." And, in a way, she was right. Because when splitting happens, the bad other is the source of all trouble.
According to what we were told by Helen, M kept pulling herself back together and then losing it, then pulling herself back together, then losing it again. This is a great development, because it suggests that this is not a completely unmitigated, uncontrollable meltdown. The molten nuclear core of the reactor keeps bumping up against enough in her life that is calming and cooling that she can momentarily regain her equilibrium, until it melts through again.
When they got back to school she flung her locker door open, accidentally hitting another child with the locker door, and pitched her stuff into the locker in a fit of rage and indignation. So she had not, fortunately, hit another child with ill will. But still . . . even accidentally hitting another child bodes ill.
She calmed herself again, but she had to come home because we have a rule this year that if she screams at school that her father has to come and get her. Once home, she was fine . . . did her homework . . . played on the computer . . . watched a little TV, ate supper, and went to bed.
In other posts I've taken issue with the metaphors that medical, media, and educational professionals use when describing our kids. I've railed against language like "splinter skills," and criticized Dr. Phil and his producers for casting an Aspie teenager as "a ticking time bomb." Yet here I am, speaking of M's behavior as a "meltdown." Hmmmmh.
This would be the time that a former colleague would quip: "Pot, meet Kettle: Kettle, meet Pot."
But seriously, what is going on here? Why would I, and so many other autism parents, describe their children's episodes of dysregulation with a metaphor that summons the image of widespread catastrophe, of the need for containment, and the danger of fallout?
M's father doesn't use this language of meltdown. He calls her episodes her "crises." I guess that's because this is close to the French crises des nerfs—the crisis of nerves. But I've been using the language of nuclear catastrophe for quite some time. I don't even remember when I first starting using the talk of the meltdown. My best guess is that I was probably talking with a doctor or another parent and trying to distinguish M's episodes from a garden-variety tantrum.
I was probably trying to explain that these episodes differ from a tantrum in their intensity, duration, and level of destructiveness. Once started, they are often difficult to interrupt. Hence they're not simply explosive, they're a chain reaction—a meltdown. Also, unlike a tantrum, these episodes, are initially, for the new autism parent, difficult to predict. After enough of them, you have finely tuned antenna and can sense the impending meltdown almost by smell. But at first they seem to come out of the blue. In fact I have found myself describing them like thunderstorms blowing through, and have read other autism parents who used the language of the storm to describe autistic dysregulation.
But the metaphor of the explosive temper runs deep through our language. He's a pressure cooker, we might say. She's a hot-head. Or he's letting off steam. Or he exploded. Or she blew up at me.
Or, alternately, he's cool, she keeps her cool, she's got a cool head.
Anger is associated heat—often the actual physical heat—complete with red faces and elevated body temperature. And cool is associated with reason.
Even when we speak of losing our tempers, we are still invoking a metaphor of heat. Tempering a metal involves heating it to a very high point, then plunging it into cool water. The result—for example, tempered steel—is less brittle, both stronger and more pliable, more resilient.
In the Western world, at least since the Enlightment, we have privileged reason—cool heads—and well-tempered selves. Our complicated social hierarchies leave little room for "losing it" or "blowing up." Whereas scuffles and drunken brawling were not uncommon among the Irish working class stock from which I hail, in the middle class, homogenized world in which we are now expected to circulate, where we are expected to pass as "white" (as in Anglo-Saxon, rather than Celt)—losing it, losing your cool, blowing up—these "ugly feelings" and outbursts—are not acceptable.
One of the books I found most helpful in shaping my understand of M has been Ross Greene's The Explosive Child. Greene describes kids like M who have a difficult time transitioning, and who lose it (temper, equilibrium) when they're asked to go from one activity to the next. He describes this is a lack of "executive function" in the brain. This metaphor is fairly telling in that it suggests a kind of internal class-structure for the brain itself . . . that the reasonable executive will manage the hot-headed working class. But be that as it may, Greene's book is helpful in that he describes this lack of "self-control" as a feature of brain maturation, or the lack of it.
He suggests that our kids simply can't hold two different ideas in their heads at the same time. So let's say that M is watching TV. And I say, "Time to take your bath." For M, TV is being annihilated. Gone forever. Gone for good. Basta. Finished.
Or let's say that one teacher says you can have the bridge to yourself, and the other teacher, the goddess of all that is good, says you can't. Urnt urnt urnt. You can almost hear the sirens in her head: does not compute, does not compute, system overload, all systems overload.
But if I can find a way to help her know that she's not losing the possibility of that pleasure forever, then the transition can be easier.
Tricks include consistency—though not necessarily rigidity—but also early warnings, and reminders that TV (or the bridge all to yourself) will be possible again, TV later, TV tomorrow.
Aggressive language, a combative attitude, and demands for obedience—"TV off now, take YOUR bath now!" would be completely counterproductive, because then her fear of losing the TV or the wobbly bridge for all time and eternity, would escalate. Parental, and pedagogical, cool heads matter so much.
What is hopeful in Greene's work is that he argues that for our "explosive" kids that this sort of self-reflexive maturation may eventually happen, but in very late adolescence and early adulthood. In other words, they'll probably grow out of it, as is said of the tantrums of the terrible-twos. It's just that they'll be 23, instead of 3, when this happens.
In the meantime, we hope we can find ways to help M be more well-tempered . . . more harmonious and in tune, as was J.S. Bach's clavier.
Image: detail from Jan Steen's The Harpsichord Lesson, mid-1600s, Wallace Collection.
Keywords: autism • Asperger's Syndrome • parenting • anger management • Greene, Ross
19 comments:
Hi,
I guess I just want to say that people don't seem to understand the level of stress that autism spectrum people are under. We are more likely to be in a state of having our nerves rubbed raw, and feeling on the edge, of needing desperately to get away from the irritation.
Seriously, life is more likely to feel like sandpaper rubbing on raw nerve ends, than it is for "typical" people.
What allows us to get through the day, to sort of undo the damage of the sandpaper are stims.
I am particularly horrified by the say some people (not you) discuss stims as negative things.
Stims are what hold me together in many situtations. They are soothing and distracting, maybe even healing.
It's a very serious thing to take someone's moment of healing away from them. That's what I see in Sweet M's need for staying on the bridge. People don't like to give autistics enough down time. They think that it has to be all learning (typical version of learning) all the time and any "zoning out" or stimming is just NOT to be tolerated.
Can you imagine living in a pressure cooker and getting little moments of respite, and can you imagine someone trying to interfere with those blessed moments of respite?
I don't disagree with your "inner conflict," "good teacher/bad teacher" take on the situation, it's just that I think you missed the importance of Sweet M's moments of peace in a probably frequently painful school day.
I have a not so well trained lap dog, and she's usually the best little thing, she gives me lots of comfort, but I have seen her with something she wasn't supposed to eat when she was really hungry.
She would have killed me if I had tried to take that thing from her. (she's a little dog and couldn't really kill me, but that's the level of primal rage she expressed). We have defenses in place that are designed to keep up alive. I think we need to realize that autistics are trying to stay alive sometimes when they are zoning out on a sensation. I think people need to work on not crossing the line and harming the kids by taking away their stims at times when they are vital.
The good news is that since M. has avoided these moments of extreme dysregulation for months AND was able to "reign it in" for moments at a time throughout this episode, she is clearly honing the skills she needs to self-regulate and that is FANTASTIC! My heart goes out to you all the same. I have to say that as I think about Bud starting all-day school, the three elements that scare me most are phys ed, lunchtime, and recess.
Camille, Thanks so much for posting about this question of stimming. I have wondered how autism treatments would be different if NT folks could experience the autistic nervous system from the inside out, for even 15 minutes. I think things would be very very different indeed.
Until such empathic technologies are available . . . sort of the Vulcan Mind Meld of our imaginations . . . hearing from autistic people about how their nervous systems feel to them is very best path to empathy.
I can't begin to imagine what it feels like to have this sort of raw nerve ending feeling. The closest I get to it is that I have seasonal affective disorder and there is a week every spring when the light changes and I find that the sun actually hurts. Not as in simply squinting because the sun is bright, but my entire body hurts if I am out in the sun light. And I don't mean out in a swim suit getting a sun burn, I mean just being outside is excruciating.
During this week my behavior can be very odd . . . I'm prone to crying, of course. But I also want to be completely alone, in my home, in the dark.
It only lasts a few days, a week at most, thank god, but it is a difficult week.
As far as stimming goes, I just don't know what to think because I don't know what I would do if I had a child who engaged in self-injurious stims like head-banging. I don't really mind perseverative play, but I did mind when M broke the glass coffee pot and had shards of glass all around her little feet.
What do you think we should do about obsessive behaviors and stims that can also be self-injurious?
Last year, while discussing past work experiences on an aspie forum, I described the behavior of an extremely upset non-autistic job applicant who couldn't cope with a skills test as a "meltdown." I used the word deliberately for the purpose of consciousness-raising because, like you, I find it disturbing that a word with such extreme negative connotations is regularly used in describing autistic people. Some forum members replied that they'd never seen the word used before to describe a person who was not autistic.
I agree with the teacher that children shouldn't be allowed to get their way to avoid tantrums. Kids are smart enough to know when the rules are not being enforced, and then they have no incentive (actually, there's a negative incentive) to work on controlling their behavior.
When my daughter was 6 months old, she had already figured out that when I put her in the crib to take a nap, I wasn't going to come back and take her out if she started crying. Her grandmother, on the other hand, was a "soft touch" and would always come and rescue her. So when she was at home, she would go to sleep quietly at nap time, but at grandma's house, she would have huge screaming tantrums when she was put down for a nap. Kids can be masterful manipulators at a very early age!
My daughter isn't autistic, but kids of any neurological type can cook up clever schemes. My aspie son didn't want to do math homework in 6th grade because he thought it was boring and too easy. So he carefully calculated his grade point average and how many math homework assignments he could leave undone, while still getting a passing grade so that he wouldn't have to go to summer school. (When I figured out what was going on, all his video games spent the next few months on a shelf at the back of my closet!)
And yes, developing the ability to deal with frustration without having tantrums is to some extent a matter of brain maturation, but like anything else, the more a child practices the skill, the more adept the child becomes.
On days when M. is sent home from school for screaming, I'd suggest that a consistent, mild punishment such as not letting her watch TV for the rest of the day might help to reinforce the need for her to work on developing self-control.
I occasionally see posts on the aspie forums written by young adults whose parents never disciplined them, on the assumption that their tantrums were the uncontrollable result of brain impairment. Now they're grown and still living at home, unable to get a job because they have no idea how to behave properly in the workplace. It's a very sad outcome that, in most cases, could have been avoided.
Bonnie makes some good points about the potential for ASD kids to manipulate, but I think that if there is more of an attempt to communicate with them, asking them what something feels like, if it's too much... rather than assuming that they can take it... will cut down on their desire to manipulate.
I can remember manipulating my mom. She told me to clean my room and that if I would she'd pay me some money. (we never got allowance, so this was a special thing) I had a little money from doing something else and decided that I didn't want any more money so I just said, "no" to cleaning my room.
I remember thinking that my mom was such a dingbat for letting me get away with that. She just rolled over.
Still, I think that some of that adversarial nature of my relationship with my mom was set up by the fact that she had almost no insight to how hard school was for me. I still don't feel close to her because she dismisses what I say about how life is for me, to some extent.
We know enough about autistic nervous systems that we can't hear voices well against a backdrop of noise. This is very stressful. When I sit in classrooms today and everyone is talking I can't think straight. But the professors will tell us to "form small groups" and discuss blah blah blah.
Yeah, that's just fine if you can hear what anyone is saying or think about it if you can hear it, against a backdrop of:
yammeryammeryammeryammerbuzzbuzzbuzzbuzzbuzzyammeryammeryammeryammeryamemrbuzzbuzz hahahaha yammeryammeryammeryammer
I think our kids are working very hard in any classroom just to maintain some kind of calm and that they need to stim or just to sit somewhere totally quiet and zone out.
Some of that zoning out time is being used to process what was said against the background of "yammeryammerbuzzbuzz".
I don't think of self-injurios behavior as in the same category as stimming. Though I guess it could be.
I used to bang my head against a wall because it felt good. I wasn't going to even damage the skin on my head a little because I wasn't banging my head that hard. I knew it was a weird thing to do so I waited until I was alone. It's a loud enough of a stim that you can't do it when anyone else is at home, or they hear you. :-)
I can sort of imagine that for people who have a higher pain tolerance that harder head banging would feel the same, but of course, that is dangerous. Sue Rubin was able to forecast when she would need her helmet, and that seemed to work for everyone. She asked for the helmet when she needed to bang her head. (did you see "autism is a world"?)
As for cutting. That's very scary, I think. I know someone who has cut for years, she seems to have a way of controlling it up to a point. It leaves scars but I don't think she's ever had her life endangered by the cutting. People get afraid of her when they see the scars though (very obvious all over her arms). What this woman says is that the cutting is an outlet for extreme frustration, if I understand her correctly. So if people didn't put her in situations of extreme frustration (which they do, it's not just her being sensitive) she wouldn't cut.
I suppose if I had a child or teen who was cutting, I'd have to hide all the sharp objects and try to figure out a way to substitute something else.
One more thing. SIB (self injurious behavior) seems to have several very different sources. One is classic frustration, stress release. I know a girl who had a bad reaction to novocaine, though. Her father had a similar bad reaction and he's AS, too. A day after a trip to the dentist she was feeling "not real" and had some kind of urge to hurt herself. She held her wrist over a candle flame. She was burned really badly. I saw it. It was scary and ugly. But she wasn't doing it for attention or out of stress. She might have been doing it to prove that she was still real. Now this is a teen girl and you can't be with them every minute of the day... but in the future you can bet she won't get novocaine.
Stims are not the same as obsessions, I'll stop here otherwise my comment will be too long.
"What do you think we should do about obsessive behaviors and stims that can also be self-injurious?"
As you know, we have spent the past few years looking for an answer to this questions. I found the answer last July:
Reading. Writing. From our Lovaas/ABA consultant.
In ABA-speak, it is teaching "replacement behaviors" that are "appropriate." It involves first doing an FBA (Functional Behavior Assessment) to determine, as much as is possible with a child who has minimal lanugage to explain his thoughts and feelings, what is causing the behavior.
Charlie also loves to stand on those playground bridges and I think it is analogous (in the sensation) provided to swinging in OT or in any swing. While the kinds of sensory experiences you can get on an OT swing or other equipment (therapy ball for instance) are very enjoyable to him, they can also over-stimulate him, to the point of "tantrum," "screaming-meltdown-berserk behavior resembling what they say the Vikings did on charging into the battlefield" (sorry to invoke a sort of ethnic stereotype).
So, my answer is: 1) We look at the incident that happened and all the attendent circumstances. 2) We think back to previous incidents of that sort of "meltdown." 3) We think about coping strategies--talking with "social stories," picture schedules for Charlie, teaching him to ask for a break. 4) We practise the strategies when he's not upset so he has the skill of asking for a "break" or "no sharing right now." And we give him a lot of positive support for learning something like this.
As for metaphors for the meltdown, I tend not to think so nuclearly, but in terms of nature and weather patterns. Behavior squalls, oceans of feeling, the storm of tears to use a cliché. I like François' crise--it's from the Greek krisis, which is related to krino, to judge, to make a judgment, a decision. (As in being a critic.) A decisive occurence.
As for the afterwards--after the report, the analysis of what happened, the worries, the planning for the next time---it is a true katharsis.
You made some really good points about the intensity that can come from our ASD child's anger/frustration/comfusion/sadness In fact, I could relate to the "explosive" episodes M has, because Gabe has them to. His biggest challenge is transitioning. Not so much from typical routine stuff at home, but anywhere else. School is a big one. He has problems seperating from toys, changing locations and leaving one thing to do something else. He will scream, go limp so I can't pick him up, cry, and try to push you away. This, I feel, will always be a challenge. It seems embedded in him. Thank you for reminding me through your entry that it is a processing disorder and Gabe does have a saturation point. I just wish I could make it better. Any ideas? Glad to hear that M is OK.
Kristin
Oy Vey! I meant MATURATION not saturation! lol
Kristin
LOL Camille, my kids are always trying to convince me (when they feel lazy) that they don't really need their allowance, and wouldn't I rather keep the money and do the chores myself!
I've been letting my son get away with not taking out the garbage for the past few months. He has been getting good grades in honors classes in high school while playing fall and winter sports, and he's a good kid generally. I figure that if the worst thing he does is not taking out the garbage, I probably ought to cut him a little slack. After a while I'm sure he'll run out of money and/or get tired of seeing his sister get all the allowance money.
Hi Bonnie,
All I can say is my own brattiness was frequently on my mind when I was trying to figure out how to motivate my own kids to do the right thing.
It's hard to know when to push and when not to push, that's for sure. They way I look at it is that parents are going to make mistakes, no decision can be perfect, so we are going to err on the side of permissiveness or on the side of being too strict.
I many ways I was the most strict mom on the planet. Most people wouldn't believe how strict a mom I was, but then, I hated to wake my kids up when they were sleeping in the morning. Their sleep seemed very important to me, because I hate to be asked to "move, move, move" when I'm groggy in the morning (I'm always groggy in the morning).
My mostly NT kid missed just about every Monday of school in 4th or 5th grade because he had a stomach ache. I understood hating school and being tormented by it, so I let him "get away" with missing that much school, but I was strict in that he couldn't watch TV and I tried to keep things boring at home when he had that "stomach ache." I really didn't think he had a "somach ache" but now I think maybe he might have had one every Monday morning, it's not unheard of.
I bet you are doing the right thing by your son even if someone might say you were "letting him get away" with not emptying the trash. He might appreciate that you appeciate he's trying hard to be a good kid when many kids are not doing so great...getting into trouble and all.
My spoiled NT kid turned out to be one great human being, in my opinion, and gave me almost no trouble during his teen years. Almost.
Bonnie,
You said that some people had "never seen the word [meltdown] used before to describe a person who was not autistic."
I have used it (as recently as last week!) to describe myself, when, as a mother of four, I "lose my cool" and rant and rave, instead of being calm and rational. (As in "I had a 'mom meltdown' this morning.") I have also used it at various times to describe the behaviour of my (NT) kids, from toddler tantrums to teen PMS. So I guess I've never thought of it as a negative/derogatory term aimed only at autistic people; it's an interesting perspective.
I had a meltdown like that not fifteen minutes ago. I found your blog in a moment of slight recuperation, but give me ten minutes and I'll be keening again.
I misread a train schedule and thus missed plans for dinner. I am autistic. I am so upset.
I'm not an autistic specialist, although I'm an autistic myself, but I can pen y'all a mean social story, if time allows (college and fitness!). I am currently majoring in medical billing and coding, but I would like to be a freelance home writer as well and would write from novels reflecting my childhood to pictorial social stories!
Oh, and I couldn't relinquish the "terrible twos" and meltdowns well into K-12 - screaming, jumping up and down, flailing, and all that tantrumy fuddleduddle. Fortunately, no one called my parents, although I related myself to Sweet M. during my teens. Now that I grew out of tantrums by the time I turned 19, I am more composed than ever!
Perhaps you can ask M's therapist to take home social stories and pictorial schedules - the social-skills-fostering techniques are sure to reduce the episodes of screaming!
I enjoyed your post. As a person who has studied linguistics and languages for years and as a parent of an autistic child, I think the discussion around the world "meltdown" is fascinating. I use the word "meltdown" and the phrase "to go nuclear" to describe my daughter's "episodes". It is the only way I can succinctly and quickly describe one of her "tantrums" to others who are not familiar with her or her behaviors. A nuclear meltdown is a major, catastrophic event with lasting fallout. Well, when my daughter has a "crisis", an "episode", a "tantrum", one could argue that it is also a major, catastrophic event with lasting fallout. But, one could argue that children with ODD (oppositional defiant disorder) experience similar issues, too. There are children with mood disorders who experience the like. It doesn't just apply to autism. The siblings exposed to these frequent "episodes" can be traumatized as are the parents particularly if they keep on coming. Mom-NOS posted a blog addressing PTSD in families dealing with autism and special needs. Language evolves over time to express the needs of those who use it. I don't think that the speakers of English are trying to be pejorative when we use terms such as "meltdown". English simply doesn't offer us anything specific enough to convey what we actually observe and experience when our child endures the explosive, nerve-raping, inner loss of control experience that many of us have come to call "the meltdown". The truth is, it is major. There is fallout. It does feel catastrophic. It is scary as hell. And, we are always monitoring and trying to prevent the next one. Until the English language evolves to provide us with a better word or phrase that fully describes and conveys what many of these children and their families experience, "meltdown" seems to fit. We can all agree that we love our kids, but we don't love the "meltdowns".
I just stumbled across your blog today and went to this post as I am familiar with the word "meltdown" as well. My son does this quite frequently and will scream, yell, threaten to hurt, throw things etc. We too have found help in Dr. Greene's book but are still searching for answers. We go to see our pediatrician tomorrow and i would like to have him assessed for being on the autism spectrum as he displays many of the symptoms. Thanks for your blog which will give me some reference while we start on our journey.
Tara
http://mischeviousmonkeys.blogspot.com/
Tara, I'm grateful if my post on our girl's meltdowns has been a help to you. In our journey with our girl we ultimately found that she did much better when she had medication for her anxiety. This doesn't work for everyone, but it was a lifesaver for us. And when her anxiety was treated, her language acquisition went through the roof. She was too anxious and adrenalized to learn anything until we got her treatment. Best of wishes for your meeting with your doctor!
I'm autistic and find that the word meltdown is very accurate. It certainly doesn't apply to every time I get upset, but there is a certain type of uncontrollable, breaking, panic upset that I will describe as meltdown. Where everything just becomes too much to handle and I pretty much have no control over the fact that I am curled up in a ball sobbing. Stimming helps hold off meltdowns. I've gotten a lot better at avoiding them and regulating and taking breaks now that I'm older (and have an unusual amount of control over my schedule, as I'm a grad student), but they still happen, especially with change.
Hi Alana, Thanks so much for commenting on this . . . Our girl's experience and yours seem similar. She's in high school now and has a much greater degree of freedom in responding to overstimulation from the environment. Generally she can move herself out of an overwhelming situation pretty quickly to avoid being overwhelmed. For her the SSRI medications have also helped a lot. I'm so glad to hear that you are in grad school! That is inspiring. We are thinking about what our girl's college prospects might look like. m.
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