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 And secondly, it often continues after the drug is withdrawn, and can be incurable.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’.