Autism – back to basics
I think it’s time for a good old moan; a grumble on the topic of impairment to joint attention, one of the hallmarks of autism, a pivotal skill that’s adrift, so the experts tell me. The trouble is, when it comes to parenting an autistic child we are often advised to ‘trust our instincts.’ It is my experience that this is basically wrong, or perhaps more accurately, that my instincts are wrong. Lets just look at three of the basics. They’re universal, so I’m told. The power of speech is helpful but not essential.
First up:-
I am the parent. You are the child and we gave you a name. You have learned your name, so I call you, either because you’re hiding or you’re busy doing something, “Freddy, where are you?” You, Freddy, do not reply. It may be that you’re replying in your head but no words are coming out of your mouth. If you, Freddy, have no words, you could always just pop your head out of your room and wave, acknowledge that you heard me, aware that I’m searching for you – but of course you don’t. I don’t know what you do about this, but I take on both roles, my own as parent, and yours, as Freddy. I have an entire conversation with myself, speaking both roles:-
“Freddy, where are you?” “I’m here mum!” I wander round the house calling out these two lines until eventually, if I’m lucky, I’ll trip over Freddy and hopefully not hurt him in the process. It’s been like that for years.
Second:-
Pointing. Yes, I know it’s rude, but everyone does it when they’re little. Parents do it too, we actually teach our little ones to point, to be rude, because we’re a bit short sighted. Teach them how to point and then scrap that, it’s rude, un-teach pointing. What a pointless exercise, unless of course they don’t point in the first place. An expert will draw a parents attention to this deficit:- “he doesn’t point, had you noticed?”
“Of course I’ve noticed, it’s just that he’s an exceptionally polite child, must come from having British parents.”
But of course it wasn’t.
Why is pointing important anyway? Because it smacks of joint attention, a shared experience; it’s absence is a red flag.
Third and last, my personal favorite:-
Hand leading. Again we don’t need words. I am not a big scary bear, I’m just a big lumpy parent, hand extended, soft and warm and inviting. It translates to ‘come with me.’ When a child makes this gesture to someone else, it has the same meaning. The underlying message is the key, again, it’s that element of joint attention, a skill that we are all supposed to have, innately, and yet it’s not there. It has to be taught. Each one of them has to be taught each skill, discretely, practiced and then generalized into all given or possible situations.
It is the absence of these three, amongst other things, that still catches me out even after all this time. I forget that they’re not there. I forget to remind them and to practice because if they’re not practiced, they’re lost. It’s not just like riding a bicycle, but much more difficult.
Too much of a tirade?
Possibly.
Why mention it then?
I suppose because it’s IEP time, triennial in fact. Suddenly we’re presented with another whole host of deficits, negatives, holes, and shortcomings, all in black and white, with graphs and statistics as back up.
We’re reminded because we need to stay on track, not become complacent – yes we’re parents but we’re supposed to be dragoons, always forging ahead. I become swept up with the urgency as the grains in the timer escape and drift away. Wipe out those negatives, re-train, re-teach, reinforce, so much so that I’m apt to forget the bonuses, those freebies that are of no great import, except to us. It reminds me of “John Elder Robinson,” how he learned to conform and yet lost so many of the superb abilities he had as a child, an alternative view that he’s been unable to recapture.
Yet it happened again today.
It happens most days one way or another, something that pulls me up short because I forget that they think so differently from me. Today as I reached over the sofa towards him, hand extended, called his name, beckoned with the other arm, he responded. He leapt onto the sofa and hung upside down over the back to examine my hand from underneath; an upside down aerial view. Silent. He moved each digit, an engineer checking the joints, fully functional, no creaks. He traced the lines on my palms and whorls on my fingertips, “mom?”
“Yes dear?”
“I cun see yur DNA.”
December 7th, 2009 at 5:41 am
The “don’t acknowledge” is the worst. There is a family in Cape Breton who’s non-verbal son was out in a snowstorm this weekend… They know he won’t respond, so do the searchers… When looking for mine those times he’s wandered away, knowing he can out run you and not respond… is probably the worst part.
IEP’s here aren’t until Jan for the second term. Although next Wed will be the start. Mine probably won’t be until after the psychometry test in Feb…. Then it’s going to be a LONG process b/c I think I triggered the IPRC process http://www.edu.gov.on.ca/eng/general/elemsec/speced/hilites.html – we are “exceptional”, I sign the paperwork annually, but never have we exercised our rights under it except for equipment. Once the testing is back, I will be writing an official request – which will be discussed next week….
Coulda, woulda, shoulda….???? I don’t know… But I do know, keeping the status quo and the ease of which that school thinks they can break promises… it’s time for the “legal” process to take over.
December 7th, 2009 at 5:46 am
Awww.. I know … Although I tend to think Jack would want to share more with me, many times he doesn’t SEE things, gets lost in his own interests … oh, never mind. It’s just tough. ((Hugs))
December 7th, 2009 at 6:48 am
Am assuming that was the British version of a tirade – it was very restrained and polite, blogfriend. I loved reading that you carry on both sides of the conversation in the absence of their participation. I do the same, and I like to think I’m modeling the behavior for my kids, not just going barmy out of sheer frustration.
December 7th, 2009 at 7:58 am
Best post ever on the internet
December 7th, 2009 at 9:25 am
I can remember the first time at an autism meeting when someone told me that they dont understand pointing and they dont look where you are pointing is an austistic thing, its like a light went on.
December 7th, 2009 at 12:43 pm
I can’t remember any pointing issues and when I think about it, I think that is because conversations about any object out of touching range was never on the menu anyway. Nowadays, having reach the age at which is it impolite, the point in moot anyway.
For us, the not responding is part of the lack of an instinctual drive to start dialog. It covers a lot more than “Freddy?” “Yes, Dad?” Oddly, 95% of the problems we have occur in the first couplet of the dialog. Once we get going, it’s fine.
I have no useful insight whatsoever.
December 7th, 2009 at 7:13 pm
I dunno, I think that’s some pretty significant joint attention and relating. Perhaps not in the way one might have hoped for or anticipated, but still…
December 7th, 2009 at 8:39 pm
My wife introduced me to the “speaking both sides of the conversation thing”, and I must admit that it really seems to help sometimes.
As to IEP’s, we had ours a couple of weeks ago. It’s been a struggle this year, but the IEP went reasonably well, all things considered. It IS quite jarring to have your child reduced to graphs, statistics, charts, and action plans.
Joe
December 7th, 2009 at 8:58 pm
Yay, IEP time. *sigh*
You have my genuine sympathy.
December 7th, 2009 at 10:08 pm
Nigel is also fascinated with the subject of DNA. Best wishes for productive, positive IEP meetings!
December 8th, 2009 at 12:24 am
You and the kiddos are in my thoughts…the loveliest time of the year….IEP
December 8th, 2009 at 3:04 pm
Joint attention – was just reflecting and writing on this topic this morning. “I have an entire conversation with myself, speaking both roles” Me too. Really? Yes. Me too. Good to know we’re not alone. Amen.
December 9th, 2009 at 11:55 am
Very interesting, thankyou! I’ve never heard of joint attention before, maybe it’s a US thing- don’t know what IEP is either, but it sounds like a real pressure for parents & children. (I’m a UK reader btw) I agree, some of these techniques are too aggressive, you don’t want to knock the personality out of the child, however ‘odd’ their behaviour might appear
.
I’ve just started an autism blog about my 6-year old daughter and her twin.
Rachelx
December 9th, 2009 at 1:52 pm
My son was diagnosed with autism almost 3 months ago at 23 months old. I was driven mad by the comments of ‘oh he is not pointing’ and what the significance of that is. I kind of get it now, but ‘joint attention’ is a new thing and I will read up on it more. Love that you carry on both sides of the conversation, I will try that. Great posting, thank you:) Jen
December 10th, 2009 at 6:01 am
I’ve never been any good at carrying on both sides of the conversation. There are certain ways to get each of the boys’ attention, different for each one of course. For Will, it involves getting his attention away from whatever he’s focused on. A loud voice will work in a pinch, but a touch is usually best for both of us. Alex actually responds quite well to the extended hand. Taking people by the hand is his primary means of making a request. Ben will use both those…though most of the time I have to physically go and get him.
Of course, getting the attention is only half the story. Then I actually have to communicate why I wanted their attention in the first place. All bets are off there!
December 10th, 2009 at 10:14 am
Thank you for this, Maddie. Your point on pointing made me smile: “Of course I’ve noticed, it’s just that he’s an exceptionally polite child.” That’s my story and I’m sticking to it.
I love that he cares to see your DNA.
December 13th, 2009 at 7:40 am
Yep, IEP time, can be a real ball-ache. We’ve got statement review in January and I need to get down to writing a report on Amy’s “negatives” so they won’t take any hours of support away.
As for the pointing, that is so true.
CJ xx
December 17th, 2009 at 8:00 am
I absolutely LOVE reading your writing! It’s addicting, hilarious, and beautiful. Thank you!
December 17th, 2009 at 9:52 pm
Awesome post…you have a great way of speaking truth with wit and irony! I spend so much conversational energy each day prompting my son on how/when/why to respond to basic cues, I fear that I’m going to start prompting rude friends and family members in my life who don’t have autism as a legitimate excuse for their behavior! And best wishes on the IEP front. Even in the best environments, those meetings are the emotional equivalent of having a root canal without anesthetic.
December 19th, 2009 at 1:33 pm
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January 1st, 2010 at 5:04 pm
Great stuff on autism looking forward to more. Thanks Curtis Maybin