Perseveration – what it is?

A very good question. Go to the top of the class. I can offer you a dictionary definition – or the various definitions as proposed by the experts. They make for a good starting point. However, they reflect the ‘discipline’ of the expert. The cognitive expert’s version differs markedly from the behaviouralist’s version and so on.

How about -‘Persistence of a verbal or other behavior beyond what is apparently intended, expected or needed.’ from “Behavenet.”

Or we could use “Wiki’s” version – ‘Uncontrollable repetition of a particular response.’ We could try something more medical in it’s terminology, but for current purposes, we have enough to work with, more than enough.

I have two versions to offer. They have a common element – repetition, otherwise they differ. Both of my boys, do this. They do it in different ways from each other. They each do it differently this month/year/ day, from how they did it last time around. It is essentially a moving target that often reflects the ‘stage,’ whatever that might be, at any pin prick in time.

Take the repetitive phrases, little ditties gleaned from the cosmos, that they repeat in a loop, sometimes for many hours; ‘to infinity and beyond,’ ‘Elliot…..idiot,’ ‘ I am not a number.’ Here, we have echolalic [translation – repeat as in an echo] tendencies, which complicate the picture.

What about the fixations or special interests? “ I am a train, not a boy, not a toy, not a girl, not a lamb,” with the elements of rhyme, meter and rhythm. Autistic children often fixate on a narrow subject that infiltrates any number of aspects, if not all, of their lives. Trying to dissect different elements may only confuse you further.

How about we try slipping in the tick or the stim? Stims and tics are terms used as shorthand to describe ‘self stimulatory behaviours.’ Many of us are familiar with hand flapping, flickering fingers and oh so many more variations on a theme. Many parents get in a great tizzy about these habits, in part because they are so noticeable to other people. The child with a hand down his diaper will only attract a moment’s attention. Not so the 7 year old, or older child. The child who whizzes around making train noises, repeating the phrases of the ‘Thomas the Tank engine’ books by the Rev. Aubrey, is a more subtle version. People may notice, but it’s ‘cute’ in a three year old. In an older child the same habit marks him or her in the public eye. But he’s word perfect, so it that echolalia instead?

There again, we have the OCD factor – ‘trains are busy, trains are fast, I am a train, no I can’t eat trains, eat nothing.’ The fear factor, the phobia, special interest or fixation can all play a role and confuse the picture, especially if you are not an expert. It’s hard to determine what you are witnessing, which makes it more difficult to decide what, if anything, to do about it?

Logical, very logical thinking, is a factor that plagues the ineffectual parent, frequently. A small incident of no particular significance can blow up into a major factor without warning.

Strangely, I have lots of photographs of my children having meltdowns. How could that possibly be? Why would I have a camera in my hand at such a time? Because the few seconds of delay in a digital camera, for an autistic child, can mean the difference between a photographic opportunity to capture a sweet memory and the moment of self destruction. The hair trigger, is aptly named. But I digress.

What about the child that tears his clothes, shreds and rips them? Would that be tactile defensiveness or sensory integration issues, or both? Probably, a millinery problem for the parent. What if he sucks his clothes, chews them, bites them? Is that oral defensiveness or the sensory complications? But what if he rakes his skin, pulls his hair, bangs his head, pinches himself to leave welts? Is this different or the same? For us, these have been passing phases, severe when they first manifested themselves, but less so, during the next visitation period. They come and go, which makes them closer to stims. Perhaps?

Does this help? Probably not. If it is of any use at all, it is merely to illustrate, as always, that autistic children [and adults] exist on a spectrum. There is no one size fits all.

So let us leave aside the definition of the indefinable. What do you, as a parent, do about it? Well if I knew the answer to that I would be doing a much better job than I am! All I can say, is that whatever you call it, however you define it, it exists and you need to deal with it. When these little flurries occur, you have several options depending upon whether it is of a destructive nature, be that physical self mutilation or mental self mutilation. If your child is hurting him or herself, for me, there is no other option than to intervene, distract, redirect or cuddle. If it is ‘mental’ [translation – “I am dah bad one, I am stoopid, I have a bad brain] the choices are the same.

However, sometimes [translation = often] they are calming, harmless, positive. If you have a non-verbal child and they repeat the same sentence for 40 minutes or more, it may be intensely annoying but it’s strengthening they jaw muscles. [translation – and they’re having fun] It is harmless, it is calming.

Depending upon what they are perseverating on, I find it helpful to think of the behaviour as a minor skin rash. You treat the condition according to it’s severity. If it itches you scratch it. Often it is an unconscious reaction. If it’s a warm day you scratch it more often. Maybe at night, it doesn’t itch at all, or when you’re swimming. Sometimes it’s really itchy and you have to franticly scratch away, you may even bleed a little, but it will form a scab. I don’t want the scab to turn into a scar, by doing this too often, but scratching an itch every so often, doesn’t seem quite so awful as many would have us believe.

Sometimes, it is not calming. Sometimes it is the eye of the storm, accelerating. This can be a fearful experience. [translation = for the parent] But it is meeting a need. One parent may take a child out to exercise, exhibit some sporting prowess to release the tension. Another parent must stand by and watch the eruption of the vortex, so that the child may experience peace, expended. Intervention isn’t always what it’s cracked up to be. [translation = good]

When you witness your naked child hurling himself against a glass door repeatedly, as well as all the other direct incidents I’ve mentioned already, I tell you truly, that it is difficult to think ‘deep proprioceptive input’ and ‘how can we achieve the same result is a less destructive manner?’ If one is slow, deliberate and determined, whilst the other is a fizzling firework let off in the house, I may be the one person on the planet who understands that you may just want to throw up your hands and weep in defeat. [translation = especially if they do it at the same time] But I think you’ll find, that there are far more people around with similar experiences than you might expect.

I wish that there were easy answers and that I could point you in the right direction, but unfortunately, direct experience does not necessarily result in accurate data.

But how am I so different, with my little quirks and foibles, the need to have things ‘just so.’ The temperature of my tea, made in just the right way. The song that seeps through every brain cell, that I cannot turn off, that drives me to distraction but I cannot stop, although I don’t ‘voice’ it.

What about you? Do you have your rituals? Is your nose out of joint [translation – bummed] if your commute is disrupted? Bummed [translation = annoyed] by the lack of ‘signal’ from your cell phone in a dead zone. The unreasonable manic driver who cuts you off, that you would gladly hang, draw and quarter, so long as you didn’t have to meet him face to face, or his family. When swear words [translation –cuss words] rile up like bile in your throat but you refrain from articulating them aloud.

Maybe you don’t throw a hissy fit, [translation – meltdown] because you’re an adult and have learned what is, and is not acceptable, but the gut reaction is the same.

They are all a variations on a theme, maybe a trapezoid peg in a quatrefoil hole. Or maybe, the other way around?

This is a useful site with lots of “practical suggestions.”


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A rose by any other name…beware of train spotters

I run in from the garden covered with muck and compost, undermined by a “caffeine” shortfall. I operate at half speed, due to an “unusually slow” start to the day. I'm careful to hide the secateurs now that tools and cutting tools are no longer categorized as instruments of torture and death. I make a quick head count as the supervisor is otherwise occupied with the computer. My daughter lounges on the sofa with a how to draw book from the library, but she's careful to note the page count on the school calendar so that she'll be eligible for a prize in her class. It would appear that the 'electronics' cupboard has been pillaged. Both boys are 'wired' to their Gameboy and Ninendo games. I go to remonstrate with the supervisor, “how come you're working at the weekend dear?”
“I'm not.” I wait for further details as his hands hover over the computer keyboard and his eyes are glued to the screen. Nothing is forthcoming. I prompt, “looks like work to me?” A pause.
“Oh! No I'm just er well…..” This is code for 'you wouldn't understand.'
“I'm listening. Explain it to me?”
“Well I'm reprogramming the train.”
“The train set in the garden?”
“Yes.” I wait as the screen lures his eyes back as he watches a programme download, the seconds ticking away.

“How is it going?”
“O.k. Still have a few faults to iron out.”
“How will the reprogramming affect it?”
“Oh, it will do lots of cool things!”
“Cool?” Such a dreadful meaningless word.
“Yes.”
“Such as?”
“Well it will go forwards and then backwards and then forwards a little bit…….” he trails off, as do I.
“I think I'll go and water the garden then in that case.”
He calls after me, “all your tulips standing to attention then, nice and straight!” I do refuse to acknowledge this statement.


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The Little Red Hen – spatial awareness issues

There is frost on the rooftops but the temperatures are due to rise to the mid 70's. The house creaks and groans, as wooden joists contract during the night and expand with the morning sunshine. House habits alter. The window that was a snug fit, [translation = stuck] now has a draught. The plugged gutter that overflowed like a waterfall, now has a nest. The door that scrapped, now rattles.

I am even more twitchy than usual. [translation = grumpy] It is rare for an old person, such as myself, to have new experiences. There is only so much daily paranoia that I can deal with. Now I have to endure the surprise of a tooth, occasionally touching a tooth. As enamel contacts enamel, I feel as if I have been struck by a cattle prod. How do people live like this? My nerves jangle with the anticipation of the next tweak, as the elastic bands on my braces twang. Suddenly the option of dentures seems infinitely more attractive. I never thought that any of my teeth would ever touch each other. Now that they are on the cusp of meeting, I wish to revoke the invitation.

I return to the task at hand. How exactly is one supposed to dress in such weather, or more importantly, how is a mother supposed to dress temperature sensitive children? Senior has decided that the solution to this particular problem is to wear his shorts in the middle of his legs. [translation = half mast] At his age and design, his arms and hands are just the right length to hold the waistband of his shorts, at the level of his groin. In this way, the top of the shorts meets the leg seam of his underwear and the bottom of the shorts nearly meet the top of his socks. Perfect!

He has yet to connect this choice with his inability to walk very far without falling over. I swear that if I hear, 'clunk' / “oopsie!” one more time this morning, I shall go completely batty. He will go around all day with his hands clasped to his crotch and his batman underpants exposed at the back!

Spouse rests a hand on my arm, “don't worry, when the mercury rises, so will the shorts!” he beams. Clearly I have failed in the 'neutral face' department. My clenched teeth might be excused, but obviously the rest of my face has given me away. I blink because at 5:30 I read “Kevin’s posting,” on his site via “the autism hub,” and the word 'mercury' blinds me temporarily.

Of course! It weather will warm up and he'll pull his trousers up.

I am still guilt ridden from a bad decision at 5:45 a.m. Mother Nature hates me. Which to do? Give the obsessive compulsive perfectionist a sheet of pristine paper so that he can draw, or insist that he colour on the back of a used piece of paper, break down his resistance and get the regulation/modulation thing going?

I am also miffed about his school book, ‘Love you forever.’ He sat on my lap at 6 in the morning to read. What did my hyperlexic son glean from this tender tale of parental love? That the periods [translation = full stops] were diamond shaped not round, ergo, he will never read it again as it is too painful on the eyes.

I hear the ear splitting scream that indicates Junior has had a near death experience of the sensory kind. Spouse and I both move as one towards the sound of the rain dancer. As time has past we can both determine what sort of banshee wailing ails him.

He is outside the 'hated' bathroom at a safe distance, arms flailing, legs engaged in the fastest type of Irish dancing on the planet.
“Dah door! Dah door! Dah door!” he yells. His arm drops from the elbow, rigid like a train signal to help us understand that he means the 'door,' a helpful gesture that is not unappreciated. We adult people, his parents, both look at the door. This is a door that always swings back open, flush with the wall. It may be bad architecture, but it's good for the children, as it prevents them from being accidentally imprisoned and ensures that an escape route is always available. The door is ajar, only slightly open. Otherwise, it appears perfectly normal. Spouse checks the other side because he is of a thorough disposition. He shakes his head towards me, silently, but his son doesn't miss this non-verbal cue and utters another agonizing burst 'Ahgggg!'

No-one is fully dressed. It is a school day. All is not well. More words percolate out of him as his body becomes less frantic; “dah world is upside down or I am dah stoopid one!” Well that's a great start, something to work on. Spouse raises his eye brows, an indication that his engineering brain is on the matter, trying to connect this particular door with junior's statement. I wait for him to snap out the answer: Spouse, the one armed bandit! Crank the lever and wait for the read out. He has two pertinent facts to connect. Junior's rain-dance subsides. He waits. His waiting permit expires.
“I am a fay LEE Yur!” he wails, as his parents struggle to interpret his message and assist him.
“Oooo I wonder?” mutters the father of the child.
“What!” I snap through clenched teeth.
“I was just wondering if this has to do with what we were talking about?”
“What did you talk to him about?”
“Er…..well, we were sort of talking about magnetism……”
“Yes,” I prompt, in what I hope is an encouraging tone.
Junior interrupts, although he appears to be having a conversation with himself: “I will be stuck on dah ceiling!”
“I fear he may have extrapolated!”
“Give me the basic facts,” I demand, as I mentally snap the strap.
Junior interrupts, “I will be dah upside down one!”
“So we got onto the subject of the world, gravitation pull, the solar system……just general stuff……..the way you do……” I resist the urge to beat him over the head and scream 'spit it out man!'
“And?”
Junior interrupts, “I am boink my head! I will be owie!”
“Well we only got through half of magnetic pole switching when we were interrupted, you know how the toilet vortex spirals in the opposite direction if you're in Australia…..I think maybe I left him with a slight mis-understanding.”
“You do huh!”
Junior interrupts, “I don't wanna be in dah Australia, I wanna be in San Jose, but not dah wrong way round!”
“Well something important came up and we didn't really finish our conversation.”
Junior interrupts, “I want everyfink be dah same. No change gravity!”
“So, to summarize, correct me if I'm wrong, you covered those subjects partially, and now, because the door is swinging in the wrong direction, he has made the mental leap that this is due to magnetic pole switching, therefore he is in the equivalent of Australia and somehow or other, he believes that gravity should go in reverse and he's about to hit his head on the ceiling, his very super sensitive head? Am I right so far?”
“In a nutshell, I think.”
“Right then! Take your son, any visual cues and props that you need and put him straight!” [translation = correct the science, fill in the gaps, eliminate potential phobia emergence and get him dressed, preferably within the next six and a half minutes]

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