I have moved over to WhittereronAutism.com. Please follow the link to find me there. Hope to see you after the jump! :)

Wednesday, November 15, 2006

To breed or not to breed?

When I first arrived in the States, my spouse was on an H1 visa. I was unemployed. Whilst we awaited the arrival of the Green Cards, I would troll along to the blood bank to donate a litre, [translation = not approximately a pint] every 57 days. One day they told me that I was no longer eligible to donate. My blood had been contaminated by eating food in the UK. I was a little miffed at the time, [translation = put out] mainly because I had another day in every 57 days with nothing constructive to do. I was also worried that the accident that I was undoubtedly about to have, would leave me wrung out, bloodless and probably dead, with no claim to a transfusion. [translation = credit denied.] Whilst America is generally a friendly place, that was my first experience of being marginalized.

These days we enjoy a different kind of exclusivity, the club for parents with autistic children. It makes decrepid old Brits struggle up unexpected learning curves and research niche areas. We are disadvantaged in many ways, as it's all very well to live in the heart of Silicon Valley but it doesn't necessarily mean that you're qualified to participate in technological advances. [e.g. blogging]

However, research and practice helps you bump into unexpected facts, such as
the research by Professor Mary Croughan on Autism in California. She found a link between infertility, being old and producing an autistic child. It should be a warning to us all, well, anyone planning a family in any case. It would have been handy if that research had been available earlier, eight years earlier, then we might have made different choices, though I doubt it.

You may feel that it's not that common to have an autistic child? But that depends upon how you define common? 1 in every 150 children doesn’t seem that common, but if you have two of them, autistic children that is, then that’s a switch of fortune, a double win. As it is, although we have four children, the two boys are autistic, but that’s probably related to the fact that it’s a condition that affects boys in far greater numbers, perhaps a 3:1 ratio, but lets not get bogged down in statistics.

Professor Croughan’s research suggests that infertility is a linking factor and that may well be so, but not for us. We arrived in this land with one perfectly ordinary female child but after a couple of years of drinking the water and breathing the air, we ended up with three more children. Careless on our part I’m sure. Were we poisoned, contaminated, had our gene pool corrupted? Perhaps. Was it mercury was it the MMR vaccinations? Perhaps it was the dodgey British gene pool? We probably won’t know that for sure for a couple of decades. I’m not that bothered myself. For me and mine it’s a ‘done deal’ as we Americans say, but for everyone else, everyone else who may be contemplating a family, it is a cautionary tale to add to the list of factors that potential parents need to consider seriously, before embarking on the real family planning.

Infertility is a blight on people’s lives, whole families are affected by the lack of productivity in that department, by a particular generation. A number of people of theoretically breeding age are discovering that Plan A of career, success, financial security and then a family, is not panning out. [translation = working] Someone has put a spanner in the works of the great plan and options are narrowing as time runs out.

Things could be a whole lot worse, as her research identifies a higher risk of a choice of five conditions, four that are not autism; mental retardation, cerebral palsy, seizures and cancer, although autism comes up as the overall winner since the risk was four times higher amongst the population studied.

This is linked with a debate about whether or not Britain should ‘consider paying women thousands of pounds to donate their eggs.’ It’s curious that US clinics sometimes pay a small fortune for such procedures whereas British women only gain 250 pounds sterling, and it’s capped. [translation = no pun intended] Now if I were looking for a career change, that might be a nice little earner. Fortunately for you that’s not likely to happen any time soon, as I think the screening process would eliminate my gene pool as a potential candidate. In any event, I'm more than a little busy with my current generation.

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.


One of the many stumpers with autistic children, can be their tendency to take whatever is said or written, literally. It’s only when you have a couple of autistic children in tow that you begin to realize just how many idioms we use in every day life. For me, this has only recently presented itself as a problem [translation = challenge] due to their speech delays. Before, I was lucky to have any response to anything spoken, now I am paralyzed into unraveling any number of common phrases instantaneously.

“I’ve been on my feet all day,” becomes a bone of contention – oops there’s another one.
• “On your feet? You are on your feet? You can do hand stands instead?” Always so helpful!

• “Why don’t you just put your feet up and rest for a while?”
“Up? Up? Put feet up where? The ceiling it is too high! I am da little guy.”

• “I’ll be with you in just a minute.” O.k. there’s no point in going into the time travel aspects of children’s lives as they all suffer from that one.

• “No it’s not a back pack because I wear it on my front.” That way it doesn’t bump you and it’s easier to get access to the contents, especially if zips are a challenge.

• “Just scrub your fingernails with a brush before dinner.”
“Why it finger ‘nail?’ Why nail? It is not a nail, it is soft and thin. Why brush? Brush is for hair, brush is for teef.” It makes you try to double check everything you say before you say it, but even then, more often than not you still get it wrong.

• “How many times do I have to tell you!”
“Tell me three times. Three is my favourite number.”

• “I’m not sick and tired of his singing because I’m not, not sick, but I am tired of his singing but not sick.”

• “I going to keep my eye on you.”
“Agh! I don’t want it, keep it in your head, don’t touch me wiv it.”

• “Of course you don’t have to, just bare it in mind.”
“Bear! Bear? There is a bear in my head?”

The simplest of statements becomes a mine field; “not twelve eggs, half a dozen will do.”
“Which box is da doz? Why we no have da Baker's dozen. Baker's are my uvver favourite because 13 is having a 3 also!”

Am I complaining? Why would I complain? Three years ago I had two children who were diagnosed as non-verbal, amongst other things, now I have a couple of brain teasers to keep me on my toes. [translation = or should that be ‘to keep me guessing?]

From a long time ago

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.”

Any offers?

Perfection is nothing

Autism comes in many forms. We experience two forms. This is one tiny fragment, of one relatively small, autistic child. His teacher reports of multiple meltdowns during the day. The source of his frustration? The inability to execute the perfect ‘q.’ I am in part to blame for this error, as he has been taught to write a ‘q’ with a sharp tail rather than a soft, loose monkey tail. [translation = continental error or calligraphic error?] Horror and consternation have ensued due to this mis-direction on my part. Once home we start his last outstanding piece of home work, to write out his full name, which fortunately is ‘Q’ free.
“Why der no Q? It sounds like dah Q?” It does. [translation = mac Q wen phonetically] Two hours later after negotiating with the screamer, I would willingly swap [translation = trade] the ‘q’ sound in our family name for the real thing. The paper is worn thin from his furious rubbings with the eraser. [translation = rubber, sorry about that but it’s true.] He has growled at the paper, spat on it, screwed it up in a ball, torn it to fragments and generally violently abused it. None of the letters that he has formed have reached the required standard, which means that they are punished by obliteration. I wait for a call from the Child Protective services as everyone else in a 50 mile radius, is also aurally abused, as he howls in protest.
I suspect that he must have a permanent bruise on the back of his skull from hurling himself backwards in the chair, same spot every time, about 15 times in as many minutes.

Now this is a leap of faith I know, but believe me when I tell you that I haven’t inflicted 20 'time outs' on him, honestly I haven’t. [translation = curious American term referring to the practice of isolating child for as many minutes as they have years] Instead I have taken a flailing 5 year old to his room to lie on his bed, where he can calm down and consider the lump on the back of his head, compare the pain he experienced, by comparison to the agony of a wiggly down-stroke on one letter. Thus far, the message has not penetrated, he has not connected the dots, or if you prefer, has failed to accept ‘less than perfect.’ For him ‘less than perfect’ equates to failure. Since failure is unacceptable, we have reached an impasse.

I have genuinely praised his efforts, real sincerity. It is a lovely capital Q. [translation = upper case] Rarely have I seen finer. The lower case ‘q’ is also delightful. I am not concerned with it’s tail, it is more than good enough for someone of his fragile years, but will he accept that? I think of the library book that I have read to him daily so that now it is overdue and we’ll have a whopping great fine. [ref 1]

I push my sketch to one side on the table but it catches his eye.
“What it is?”
“Oh it’s just a rough design for the bowl I’m making.”
“I can see it?”
“Oh course.” [translation = sure]
“Dat is dah most beautiful one I am ever seeing! You are de artist!”
“No, it’s just a rough sketch, so I know where to put what.” I watch his eyes as his index finger traces the lines on the paper, eyes like saucers, as any youngster is, when faced with evidence of older children’s work. I grab it from under his arm, scream at it, rip it from the book, screw it up in a ball and hurl it across the room, “I hate it, it’s stupid, it’s no good!” He looks at me open mouthed.
Well it was just too good an opportunity to miss really, and cheap at the price. Thank you SJPL.org.
[Ref 1] Ish by Peter H Reynolds – for all the little perfectionists out there.

You Choose [translation = decisions, decisions, the whole time decisions]

One of the many oddities of sharing your life with a couple of autistic children is that they force you re-evaluate. One of my boys has always experienced an inability to make a decision or a choice. It doesn’t matter what he’s supposed to be choosing between, that is of no importance, it’s just the choosing bit. A good example would be two things that are identical and two things that he likes, such as a commercially produced cookie. [translation = shop bought biscuit] What is the dilemma, what is the problem in choosing one over another? I have no idea. You would think the problem would be easier if one choice was less preferred, say a cookie and a broccoli floret, but it isn’t any easier, he is still paralysed by indecision.
These days I am shameless. I quiz experts, harangue my pals, [translation = friends] strike up conversations with complete strangers. [translation = American] I trawl for answers. Everyone is helpful, but none of them, the answers, that is to say quite fit the niche. [translation = seem right]

Which would you prefer, go to the toy shop [translation = store] or a trip to the theme park? Especially difficult for me, since I am "allergic to shopping." No, still impossible to choose. This shirt that you like, or this shirt that you refuse to wear? No, still can’t choose. I can see that you doubt my veracity and even if you believe me, what difference does it make, why does it matter? [translation = why am I getting my knickers in a twist about it] Well, it wouldn’t be so bad if there weren’t so many choices quite so often, but if, every time you are faced with a choice your response is to collapse to the floor in a screaming meltdown, then perhaps you might be a little more sympathetic? Or maybe not. Ignore sympathy, consider the passage of seconds and minutes, contemplate efficiency or time management? Oh please! Stop whinging woman! [translation = moaning] But they are interfering with my proficiency statistics as I have to factor in anywhere between 20 minutes to an hour, for every question, to permit many meltdowns. It’s just not good enough. I’m too busy for all this autism stuff, my organized life is transformed into chaos due to a dilemma over socks. I can’t be doing with it! [translation = intolerant, anal parent] I wouldn't mind quite so much if it were not for the fact that, apart from anything else, "shopping is my number one bug bear."

He has been making progress though, in tiny, miniscule, almost imperceptible steps. The speech delay only complicates the issue. It is because of this that I watch him in the process of choosing, watching quietly and unobtrusively, because I don’t want to jinx his chances;
“I need to sort dis out! [recognizes there is a problem] What I do? [seeks solution to problem] O.k. Right! I know. Eenie, Meanie, Minie moe, catch a tigger by it’s toe, if he hollers let him go, eenie, meanie, minie moe. My muvver says…..wait a second!” As he says the words, his finger doesn’t keep in time with the syllable count, but it doesn’t matter because he doesn’t like the outcome in any case. I have always found this peculiarly fascinating. I could intervene, help him hand over hand, because that definitely helps, the kinesthetic practice, [translation = body doing it means that’s the body is learning it by going through the motions] but I don’t. He counts but the finger doesn’t keep up, although it keeps moving. One blink later the finger is ahead of the count, it randomly speeds up, then lags behind. No-one can count accurately like this, it is not helpful. [translation = a vindictive metranome] His speech is fluid. If his speech was incoherent his finger would be in time and he would have an accurate count. This is why he can’t catch a ball, or more accurately, can’t catch a ball and speak at the same time. It is such a bizarre thing to observe, so tiny yet completely disabling at the same time.

It occurs to me that the majority of the population, especially young people in the general population, clearly have as many difficulties choosing between competing options, just as he does. I watch him re-examine the choice board, as his index finger floats from the juice icon to the cookie icon, which are both in the category of ‘treats’ and therefore he can only have one of them. I think of the other childhood counting game that I used to utilize such as ‘one potato, two potato,’ there is the equivalent in every country. [translation = universal.] I try and remember the feeling whilst I was playing them? Depending upon whether I was one of the group being chosen from, or whether I was trying to make a choice myself, what were the thought processes? It was basically surrendering yourself to fate, giving responsibility to something else. It was only when you neared the close, and the light dawned about the outcome, that you could choose to accept the inevitable or cheat. If you choose to cheat this means you know that you do in fact, have a preference after all, it suddenly becomes clear, even if, just until that moment you weren’t aware of it. Whilst his difficulties in choosing have always been catastrophic in the past, this might just have been an extreme form of what everyone else is experiencing too.

I watch him cheat. Horray!

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