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All in the Genes

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

I Neglect My Children. It’s Official Now.

Introduction

Living with an autistic adolescent boy is, I suppose, never going to be easy. With one who likes to toss heavy objects over a neighbor’s fence, damaging property and risking serious injury to whoever is there, the problems can be immense. Add to that his liking for running out into the main road outside our house or running along that road to see his friend in the next village, and it might not surprise you to learn we are now on more-or-less friendly terms with the local constabulary.

We erected fences and raised the height of the neighbor’s fence. We paid for repairs to a BMW with money we couldn’t afford, and put locks on all windows and external doors to keep the errant lad penned. An occasional kick or tantrum indoors still, but at least Peter couldn’t put his own or other people’s lives at risk.

Peace, for a few weeks.

Enter the social worker.

No help offered. No psychological interventions or behavioral therapy. But at least she offered a word of advice. “Your refusal to put Peter on Risperidone could be seen as neglect.”

Risperidone had been suggested, by a psychiatrist who hadn’t at the time seen Peter. We, as caring parents, researched for side-effects. Google tutted and shook its head.

There are many known side-effects, some rare, some trivial. One in particular, tardive dyskinesia – involuntary, repetitive body movements, usually of the face but also sometimes in the limbs and elsewhere – worried me for two reasons. First, it can be socially isolating, the last thing an autistic adolescent wants. And secondly, it often continues after the drug is withdrawn, and can be incurable.

So we continued to resist, asking for other remedies to be tried first. And we continued to research.

We found encouragement in the words of the NICE (National Institute for Clinical Excellence) guidelines. Under the guidelines for Learning Disability and also the guidelines for Autism, it is stated unequivocally that Risperidone should not be offered until psycho-social remedies have been tried and given a chance to succeed or fail.

Despite this, before any such remedies had even been proposed, a case conference was called to decide if Peter should be put on a care plan.

 

The Case Conference

We were led in, Selene and I, to meet the independent chair and the professional minute taker. Introductions completed, we sat as the other professions entered.

First to speak, the police constable. After stating that she had been beat officer in our village for more four years and only knew of our existence six months ago, she then listed Peter’s misdemeanors and absences in great detail. She also mentioned two occasions when we had called the police, from a town four miles away from our home, to report Peter missing during shopping trips. On both occasions, after considerable and much appreciated police effort, Peter was found halfway home.

When she had finished, a clear picture of a child in need of help had been painted. We know he needs help – immediate, appropriate, effective help.

Then the social worker made her case. She confirmed that we had refused to put Peter on medication. She mentioned an incident that took place some years ago, when Peter had pulled his younger sister, Twinkle, out of her bed while she was asleep.

Next to speak was a representative from Peter’s school, a school which Peter has refused to attend for more than two months. The deputy head said categorically that there had been no bullying. “If there was, I would have heard.” He was adamant that no investigation would be undertaken. He then produced a plan to get Peter back into full-time education within six weeks, one which, as we stated, ignored Peter’s fears and couldn’t possibly work without us using force against our son.

The psychiatrist confirmed she had advised starting Risperidone on a low dose, increasing it gradually until it had the desired effect.

We mentioned the NICE Guidelines.

The independent chair observed that a) she was sure the drug had not been offered as a first resort, and b) there was no evidence for any harmful side-effects. Neither of these statements were in the minutes, which we received five weeks later.

I, to my shame, let her get away with it. In those two statements, she had, as I now realize, effectively undermined our case. The conference was called precisely because we wanted other remedies to be tried before we allowed our son to be subjected to a potentially harmful drug. We wanted to protect him from risk of harm.

Soon followed the vote to put our children – not just Peter, for whom the case conference had beeb called, but also Twinkle his eight-year-old sister – on a care plan.

The three possible criteria were explained.

1 Physical Abuse. They couldn’t use that because there had been none.

2 Sexual Abuse. They couldn’t use that, because there had been none.

3 Neglect. As the social worker, first to vote, explained, “We have to use Neglect, because the other two don’t apply.” And, out of ignorance, I let her get away with that.

For Peter the vote was a unanimous Yes. For Twinkle, the only No came from the social worker, whose workload would be doubled.

 

 

Does it Matter?

Does it matter that we now have it on record that our two younger children have a care plan because of our neglect? It hurts, but the main issue is this. Will they, particularly Peter, get the help they need? If they do, any bruising to my delicate feelings would be trivial in comparison.

Our two older children are far away, each with a successful career. We brought them up to be strong and independent. That is our aim for the two that remain.

The local authority now has more control over Peter and Twinkle and we must see how they use or abuse that control.

I wonder to what extent the chair’s false comments about Risperidone swayed the meeting. I’ll probably never know.

But I’ll never again go into such a meeting without a very clear understanding of the possible outcomes, and of my own rights.

Did the ‘independent’ chair have a right to call for a vote on a plan for Twinkle during a case conference called for Peter’s protection? I don’t know yet, but I will find out by the time of the next meeting.

As for the use of Neglect because the other reasons, Physical Abuse and Sexual Abuse, don’t apply, I have since read the document ‘Working Together’. This UK government document, designed among other things to state how a case conference such as ours should be carried out, defines the terms under which a care plan can be made under the category ‘neglect’. It isn’t, as we were told at the meeting, simply a default for when the other two categories can’t be used. Clear criteria are set out, and had they been read out at the meeting, where the chair reduced it to the four words ‘risk of significant harm’, the vote might have been different.

And will the chair’s comments that there is no evidence for the side-effects of Risperidone, and that she is sure the drug wasn’t offered as a first result, be added to the minutes, as I have requested? I’ll know soon enough.

 

Two More Things

On the bright side, I have learnt two new pairs of synonyms, which to a person such as me, who clearly cares more about words that about my children’s welfare, must be adequate compensation.

I now know that ‘neglect’ is another word for ‘protection’.

And I have learnt that ‘independent’ can at times be used to mean ‘malicious’.