A little background
Selene and I were halfway home from a visit to a private psychiatrist when the implications of the psychiatrist’s words began filter through to me. Not that it would make any difference, at least in the short term, to Peter, but the impact on the lives of our family could be enormous. And our son’s future somehow seems a little less arid and determined.
Peter is fourteen years old, ASD by diagnosis, with moderate learning difficulties. His difficult behavior over the past few months has resulted in a care plan being put in place, not just for him but for his nine-year-old sister Twinkle.
(See more here: wordpress.com/post/writerpluck.wordpress.com/2)
The risk to himself and others is genuine and needs to be addressed. He has thrown heavy objects – large roof tiles and drinking glasses – over a neighbor’s fence, damaging a car and risking harm to a poorly-sighted neighbor. He has run out of our home along a busy road, with little thought of safety.
We have been put under pressure to give Risperidone. Although no other remedies had been offered (in accordance with the NICE – National Institute for Clinical Excellence – guidelines), we recently started him on a low dose. What else could we do? No other help had been offered.
On the other hand, his ability and desire to express himself has developed beyond our expectations over the same period. Over the last six months he has told us:
- He wants to learn to drive a car. It isn’t my role to set limits on his possible futures, but I try at least manage his expectations.
- He’s sad that he can’t speak as well as Twinkle. I find it wonderful that he can now express this, clearly and without anger. We have been as positive as we could, telling him that, although his development was slower than his sister’s, he was making excellent progress.
- He wants a baby of his own. That horrified me. I hope I didn’t show it.
The evidence for the genetic element in most autisms is strong. (Analyses of data suggest, for example, that the concordance rate between identical twins is 60% to 70%. If one has it, the other is likely to have it too. Between father and child it would be less, but still significant.)
Also there have been a couple of occasions where we believed Peter had pulled a young child – once Twinkle, years ago, and recently his toddler niece Zarah – out of their beds. In a recent conversation, he told us of a time he tried to cuddle Zarah: “I picked her up for a cuddle. I tried to put her down.” What we had thought of as an act of aggression was a misjudged act of affection.
These three revelations have, it seems to me, one thing in common. They reflect a desire to be normal.
So there we were, with a care plan that offered us the opportunity for numerous weekly, fortnightly, monthly and three-monthly meetings but little action, and a son who struggled to express his growing frustration. Time for us to take further action.
Enter the Psychiatrist
Although he was an hour’s drive away, and more expensive than most, we chose Dr. Reinheart for two reasons. He had been strongly recommended by friends. And he had, in addition to his psychiatric and medical qualifications, a degree in law.
If you have read my previous post (link above), you will know that we are not pleased with the way Peter has been treated by the local authority, and someone who could assess Peter from a clinical and legal point of view seemed ideal. We were not disappointed.
After an hour or more discussing Peter’s likes and dislikes and atypical behaviors, Dr. R scribbled a bell curve onto a page of his note book and added a few colored lines. “See, here. Autism, but borderline for diagnostic purpose.” He moved his pen along the chart. “ADHD, low level. Some dyspraxia, moderate learning difficulty, touch of this, touch of that.” He leant back in his chair. “What we have here is typical of perinatal hypoxia – deprivation of oxygen during birth.”
What This is Not
This is not an attempt to blame the staff present at Peter’s birth for his problems. They may have made mistakes. I’ve made a few. We can’t undo the past.
Until I started writing this post, I believed an umbilical cord wound twice around the neck was usually enough to cause serious brain damage. Fortunately, professionalism kicked in, and I checked the facts before committing my thoughts to e-paper.
According to one site I visited today, about a third of births occur with a nuchal cord – with the cord around the neck. One in a thousand have the cord four or more times around the neck, in most cases without complications.
Had the cord been clamped and cut before Peter took his first breath, that could have caused hypoxia. He would have had no oxygen intake until he took an independent breath. My own recollection of the event fourteen years ago is hazy. It was several quiet minutes after the birth before Peter was handed to Selene, and by that time the cord had been cut.
Looking now at an extract from the hospital’s birth register, l note the words ‘LOW ARTERIAL CORD PH’. I hadn’t seen these before, or thought them significant, but I assume from the fact that they occurred twice in the notes they were important.
Again I claim no great knowledge of the subject, but my friend Google pointed out that such acidosis is a good indicator of fetal distress, with a high probability of permanent brain damage.
So it would seem that, after ninety minutes of questioning us about Peter’s foibles and eccentricities, Dr Reinheart had come across a truth of great importance to our family – a truth that no one in the NHS had felt willing to reveal.
Does it Matter?
Does the cause of Peter’s disability matter, either to us or to Peter?
It doesn’t change the nature or extent of his problems, although it might suggest alternative strategies that we can apply in the future.
But in one important respect, everything changes. If Peter’s problems are related to problems at the time of his birth, then they are not genetically caused. So the risk of further autism in the family is no more for us than for the population at large.
Selene and I are precluded by nature from increasing the world’s population any further, but the same cannot be said of Peter’s siblings.
Penelope, late twenties, still hasn’t settled down, but she has a few good procreative years left if she’s in the mind. (If you read this, Penelope dear, I’m not hinting. Just saying.)
Philip, three years younger, already father of two young girls, need have no more fear than any other parent of bringing a son into the world. (Absolutely no rush though, Philip. Sort your career out first.)
As for little Twinkle, you are far from having to worry about such matters. But at least, when the time comes, if that’s the path you chose, there will be one less potential difficulty standing in your way.
Thanks for reading.
A little background:
wordpress.com/post/writerpluck.wordpress.com/2 – I Neglect My Children. It’s Official.
I also write fiction:
writerpluck.wordpress.com/2015/11/24/the-philosophers-experiment/The Philospher’s Experiment – The Philosopher’s Experiment
TheRespiteTrilogy.com 