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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Ignore the autistic child

Spouse and I haven't seen each other during waking hours for a considerable period of time. We decide to attempt an adult conversation. [translation = reciprocal exchange] We have many things to catch up, the meaning of life, amongst other things. We commence with 'other things.' The first 'other thing' for discussion is the problem of the window, the kitchen one. It lets in lots of light, but we're in California which means that in March although the temperatures outside are in the balmy mid 70's, within the confines of the window, the temperature tops 101. ' Would that we all had such problems!' I hear you sneer, and well you might, but you see this house is a haven for plant life and plant life curls up it's toes and dies pretty rapidly when the barometer creeps over 90.

“Well why do you have to grow so many seeds anyway?” he starts unhelpfully. Junior continues to perseverate on the floor between us, at 'tripping over' distance. He stabs the floor boards with the green cocktail stick, his favourite colour of the week, or possibly month. [translation = maybe longer] Since it's made of plastic, we anticipate minimal damage to either himself, or more importantly, the floorboards.

“I grow seeds to save us money dear.”
“How does filling the garden full of flowers that have to be watered, with very expensive water I might add, save us money? Exactly?” Junior mutters to himself as his imaginary letters fail to meet his exacting standards of precision, even though he can't actually see them.
“Good point! When are we going to fix the sprinkler system? When everything is already dead at this rate.”
“By 'we' I assume you mean 'me'?”
“I didn't say that.”
“You didn't have to.” I look at the top of my son’s head, busy, absorbed.
“Do you realise I could say ‘chocolate pudding’ fifty time now and he wouldn’t even blink an eye.” We both look at the top of his head, whilst his fingers scratch away. Otherwise he doesn’t so much as flinch, oblivious.
“Anyway. The window. How can we make it cooler in there?”
“How about the fan, the old one in the garage?”
“That will ruin my streamline look and anyway, then they'll just all be in a hot desert wind, rather than a still desert.”
Junior pokes me in the leg with his cocktail stick. I check to see if this was experimentation, an accident or a request for attention? I can't tell, so I carry on the conversation without paying him any more heed. He's quiet, don't lets rock the boat.
“I suppose. Do you keep the little side windows open?”
“I do, but there just no air flow.” Three well timed little pricks to the calf attract my attention, “yes, dear?”
“Pointy fings.”
“Yes it is pointy. Pointy and chartreuse coloured.” Spouse changes position on the counter and peers upwards, “we could always put some shade up. I could tape some cardboard up there.”
“Cardboard! Are you quiet mad? There again, that's quite a good idea.”
“Yes, we could have some of those lovely pull down canopies that they have on shop windows.”
“You're kidding right?”
“No really, I think that's a brilliant solution.”
“Just for a few weeds,……er plants?”
“No, not at all. It will add to the value of the house, a sound investment.” Junior stabs my little toe with the cocktail stick, “pointy plants!” Really, the child can be so irritating sometimes. I hunker down to attend to the annoyance. “What are you doing dear? It hurts my toe when you poke it like that.”
“It does look rather like a chipolata,” my beloved spouse adds unnecessarily. Junior rolls back onto the floor to guffaw, “wiener!!!!!!!” I take advantage of the mutual hilarity between the males of the species, to drive the point home, “so I'll give them a ring and make an appointment for them to come and measure up then.” It is a statement not a question, “that way we can fill the whole window with beautiful plants for the delight of everyone!”
Junior regains his composure, climbs up on the counter, to where the top glass shelf is located. He is above our eye line. He takes his green cocktail stick and uses it as a visual aid for his aged parents to announce his own solution, “pointy fing, wiv prickles is being dah cactus that is growing in dah desert. Now I have my chocolate dessert?”

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Conversation piece

I clean the toilet. At the age of 46 I can admit that two years ago I was uncertain how many sides a dodecahedron had? I can also admit, that it was my four year old that caused me to wonder. A speech delay combined with autism makes for any number of misunderstandings and confusions. How can a child point out incorrect pronunciation of a Pokemon character, too subtle to be understood by elderly years, and yet simultaneously, that same child is unable to remember the word ‘cup?’

I use bleach and ignore the screaming environment. As usual I am a vision of loveliness, jeans, T-shirt and yellow Marigolds. A small and persistent person, is close by, watching my progress after his latest ‘oopsie, too late, oh well, never mind, better luck next time.’

I resolve to be more careful about what new mantra I install in them next time. I scrub, flush, rinse and cleanse. His nasal tones reach my ears. Although he is always nasal, this time he is more nasal than usual, because his nostrils are pinched closed to protect them from the bleach fumes. “What is your favourite shape Mummy?”
“Er, I think probably a circle.” It is unusual for him to be close by whilst I am performing this kind of task, he is almost ‘chummy.’ [translation = unusually friendly]
“Wot abow trapezoids, don you like dem too?” He doesn’t usually engage me in ‘casual conversation.’
“I do like them, I just prefer circles.”
“You don like parallelograms too?” O.k. maybe not ‘casual conversation’ per se, as this is one of his preferred topics, but he still has to tolerate the fumes to remain here and chat to me.
“I do, it's just that I like circles best.” I think we might be having a reciprocal conversation?
“Oh. What is your favourite tertiary colour?” How many exchanges is that? Why is he still here? Why hasn’t he given up yet and left me stranded in mid- ‘conversation’ like he usually does? Just as I begin to think that we might really be having a conversation is usually the same moment that he disappears, whilst I’m in mid-sentence.

“What's yours?”
“Brown, because it is the colour of chocolate and that is my favourite food too.”
“Well, that’s lovely. Thank you for telling me that. You’re getting to be such a great helper. I love how you use your words these days.” I turn to face his blue eyes, eyes where the pupils are focused on mine. I move to one side so he can flush, perform his ‘helper’ duty.
“Daz o.k. I love how you ……you……you are dah great cleanerer!” His hands move from his nose to cover his ears in anticipation, of the Niagara flush.

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No Way Jose!

This phrase is beginning to annoy me. It's o.k., on it's own, it's familiar, I don't need it translated but I've been forced to hear it more often than the average person does in their whole life time. I don't know when exactly this phrase was popular or hip, but the fact that I know it all, means that it probably hailed from the 70's.

That of course is probably an exaggeration, as I have no idea how often the average person hears that phrase, indeed I don't even know who the average person is anymore? I digress, as usual.

I still have the feeling that I am being victimized, singled out for this particular form of aural torture. It's not the first time it's happened, although different phrases have been used over the years, as they have gradually emerged from the non-verbal world.

I used to exist in the non-verbal world where they wouldn't talk, but of course now that they are talking, I wish they'd all just shut up again. [translation = refrain from using repetative speech patterns] It wouldn't be so bad if there was a little variety, but if the response to every question you ask is 'no way Jose!' regardless of the subject matter of the question, it does begin to wear away on the nerves after a while. [translation = grate]

I should be grateful really. At least when they yell it out across the playground it has at least the semblance of 'normal.' [translation = blending in] Not so with the phrase of the month before, which was 'to infinity and beyond!' Come to think of it, that was probably o.k. on the playground. [translation = school yard]

Not so good in the supermarket;
“Did y'have a great day in school huh?”
“To infinity and beyond!”

Or in the restaurant:
“D'you want fries with that?”
“To infinity and beyond!”

Or in Karate class:
“Stand up straight, d'you hear me?”
“To infinity and beyond.”

So do I correct them? I should probably correct them shouldn't I? Put them right, model a better example? You're right of course, but at this stage, I'm just celebrating that they're talking at all. For right now, it's more important that they voluntarily choose to communicate. I don't want to be too hasty in the correction department, because then they might give up; 'too difficult, I won't bother then, I'll just not speak at all. If what I say isn't good enough for you mum, then rats to you, I'm back to silence.' [translation = mime, gestures and mimicking.]

That wouldn't be considered progress. So for the time being I just encourage them to use their words. They may be the wrong words, socially inappropriate and irrelevant words, but words are so much better than silence, so much better than a meltdown or a physical explosion of rage and frustration. It's all relative.

Of course I'm aware that whilst I choose to categorize these phrases as attempts at communication, someone more knowledgable, would point out that more often than not, they aren't actually talking to a person, just the ether. They're using words but unless they're directed towards someone, anyone, can we really call it communication? I feel you're being a bit picky, but of course you're absolutely right again.

Sometimes it's merely fortuitous timing, someone asks them a question and they happen to blurt out their phrase of the week in the next few seconds, so it appears to be a response. Other times, although I am a little biased, their words do seem directed towards the questioner. They're still the wrong words, there's still no eye contact, but if you look carefully their bodies are orientated towards the person, because looking at someone's eyes can been painful, especially if you're speaking at the same time.

Not experienced that feeling? No, neither have I, but I know that it's more common that we think. You must have met someone like that, someone who wouldn't meet you in the eye? They seemed a bit shifty but you couldn't really put your finger on why that was, unless they were a Brit of course.

Now the knowledgeable person would say, 'they're not communicating, they're perseverating.” They're what? Perwhaticating? Perseverating. What might that be when it's at home? Well, in this instance, it's when they get stuck on a little phrase, doesn't really matter what it is, and then they repeat it, again and again.

Why would anyone do that? It's comforting, soothing, like stroking a cat. Once you start it's difficult to stop. Sounds a little obsessive compulsive? You're right, it can be, but they can also be mutually exclusive.

Now hang on a second, I hear you cry; I know a child who does that, I used to do that myself when I was little, usually something off the TV that was cool and hip and demonstrated to your peers that you were with the programme. [translation = program] Nothing odd about that, all perfectly normal! Yes, you're right again, and you probably did drive your mum batty saying it so often, but you didn't say it to everyone, you didn't use it all the time, you didn't say it again and again for an hour and a half in the exact same tone, and then repeat the whole exercise with a different phrase a couple of weeks later and so on, year after year.

Now I know that you're beginning to get a little uncomfortable with this, sounds a little too much like insanity and we don't want to be messing about with mental diseases. But that aside, it's not as weird as it first sounds. We all have little coping mechanisms to deal with stress, anxiety and boredom. Little things like picking your nails, twiddling your hair or removing microscopic pieces of fluff from your clothing. There's no harm in those? Of course not, but there are other's too, biting your nails, chewing the inside of your cheek, twiddling your fingers, tapping out rhythms on the edge of the table, little tiny things that are all much of a muchness. [translation = of no great consequence]

There are other addictions that we all know about, condemn and criticize, but it's the smaller ones, that no-one pays much heed to, that intrigue me more. The people who can't go anywhere without particular possessions, things that they claim they need, little props of support for the chaotic world that we exist in, like an i-pod or a cell phone, little talismen of security.

Do you feel frustrated if you can't fit in your morning jog, ticked off if someone switches your special chair at the office, can't start the day unless you have that particular cup of coffee made just the right way?

Don't worry, your secret's safe with me.

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The Campaign Trail

Spouse appears, “budge up you lot.”
“Budge? Budge! What is it duh 'budge?'”
“He means scoot up dear,” I explain.
“Why he say 'budge' if he is meaning 'scoot'?”

This is the trouble with autistic kids. [translation = youthful goats?] They latch onto some irrelevancy and beat you over the head with it for the next 24 hours. [translation = indefinite period of time.]
“I don't know, perhaps you could ask your Dad yourself?” I prompt, trying not to vaporise his father with my glare. [Do I have to translate for him too?] He doesn't get the chance to ask, as his Dad separates them out to nestle himself onto the sofa.
“Thanksgiving soon,” he announces to an audience glued to the telly, “I wonder if they'll eat any of it this year? How about it? Shall we practice our 'good eating' again? We could make an early start, say this Sunday? Tomorrow?”
The thought of ruining a perfectly good Sunday with food therapy, is not an attractive one, “well they did eat roast potatoes last year, not for Thanksgiving mind, but they did by Christmas,” [translation = the holidays] I add weakly.
“They'll have forgotten that by now,” he comments gloomily, “it'll be 'new' food again, as far as they're concerned.”
“What? What it is? What is da 'roast'?”
“Big chips.” [translation = fries]
“Big fries! I think I am liking dem a humungeous lot.” [translation = a great deal] The speech delay makes him difficult to understand at the best of times.
“No you don't, you hate them,” he sister remarks unhelpfully.
“Don't put him off already,” Spouse snips, but she's ready with a rebound, “well if you didn't talk foreign all the time, then we wouldn't have all this 'what it is?' business, all the time,” she complains in an imperious tone. We exchange glances, foreigners and aliens in our own home.
“Perhaps it's about time that we had a concerted campaign to switch them around again. All this 'what it is,' it is immensely irritating when they both do it and so often,” I sigh.
“What? What it is? What?” They're both off in chorus.
“Can't you shut them up they're driving me crazy,” she squeaks, jumping off the sofa, escaping their stereo system with her hands over her ears.
“Don't you think we'd be over doing it a bit?” he asks feebly.
“How so?”
“That would be two new campaigns at the same time! I don't know that I'm up to it.”
“What it is? What it is? What da 'campaign' is meaning?” His sister stamps her foot and shouts “campaign is meaning ‘fixing,’ fixing you lot. Oh man! I'm doing it now too!”
“I think roast potatoes are a little optimistic. There's not enough opportunities to reinforce them. [translation = anything that is dubbed ‘new’ has to be offered many, many times before it has the chance of taking hold] I think we should convert to the American way and have mashed potatoes instead. [translation = creamed] That would be so much easier as I could chuck them in the freezer, but roasties are foul if you freeze them.”
“Oh we can't!”
“What have you got against mashed potatoes?”
“Nothing I love them, but I love roasties more.”
“Well you'll just have to make this tiny sacrifice for the benefit of your loved ones then won't you.” I try to moderate my tone. [translation = unsucessfully]
“But we can't!”
“Yes we can. You're a diabetic and there's the cholesterol thing. [translation = most Brits are challenged in the department of ‘medical terminiology] This is a much better choice for any number of different reasons.” He backs down in the face of deprivation, but rallies with, “such as?”

“Well, it's a question of priorities. Which is more important, that they learn to eat roast potatoes that don't exist in this country, which I have to cook twice a year, or that they learn to ask 'what is it?' rather than 'what it is?' which is driving us all completely bonkers every 2 minutes?”
“What it is? What it is da 'bonkers?'” We ignore him, grabbing the only opportunity that we have had to converse for nearly a week.
“Ah! so it's just that you don't like cooking them then?”
“What it is? What it is 'bonkers?'” We persevere.
“No, I'm just saying, that it's not a very useful skill to acquire?”
“WHAT IT IS? WHAT IT IS DA 'BONKERS?'” he yells at fifty decibels. Everyone ignores him as his sister takes her turn, “the campaign we really need is for you two to stop talking foreign and then they won't have any questions any more.”

Spouse ruffles his stubble, “or we could just stop talking full stop. [translation = period] Lets just stick with the roast potato campaign. Can't the speech therapist fix the 'what it is' bit?”
“They can have a go but it won't work unless we do it at home and at school too.” [translation = generalization; what they learn to do in one setting doesn't necessarily transfer to different locations.]
“That's it then, just the roast potato campaign. At least that will have a fixed duration! We'd only have to do it until Boxing Day [translation = the 26th December] whereas the other might take a life time.”

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