BIS-net is becoming known locally in Exeter as a “go to” place for parents wanting guidance and ideas how to support their autistic sons and daughters. Many parents have attended workshops about the social and emotional development of children with autism; – after feedback from parents, we split this into two separate workshops – one for younger children and one for teenagers. Other workshops focus on understanding ASD, PDA and ADHD (autistic spectrum disorder, pathological demand avoidance, and attention deficit hyperactivity disorder). But the overarching theme, and the reason BISnet was set up – is to improve outcomes for young people with “challenging behaviour”. Workshops focussing on challenging behaviour, and de-escalation strategies, are open to all parents who need them, irrespective as to whether their child has a formal diagnosis or not.
So what is challenging behaviour? In a nutshell, the term has come to mean “behaviour which others find challenging”. Verbal and physical aggression immediately spring to mind, (a major factor in many school exclusions in Devon). People find it equally challenging when children don’t answer them, don’t look at them, hide away or run away. Challenging behaviour can be experienced as “nasty” or “rude”, however when you start to understand underlying reasons for this behaviour, it becomes clear that the young person is rarely wanting to be nasty or rude.
Challenging behaviour can be hurtful and distressing, and makes it less likely that someone will gel with a group of people, and function successfully in our society. Society is quick to judge children for being naughty, and blame parents for “poor parenting”. Both of these approaches are counter-productive, and lead to the child and the parent feeling misunderstood and isolated. The very term “challenging behaviour” has negative connotations, and my feeling is that the term “neurodiversity” is more useful and less judgemental. Neurodiversity is a term used to describe conditions such as autism, with the emphasis on how “neurodiverse” brains differ from “neurotypical” brains. An important thing to note is that one is not wrong, and the other right, – people with “neurodiverse” brains find some things hard and some things easy, as we all do. Our society is pretty much built around the needs of neurotypical people though, which can make it a difficult place for neurodiverse people to be.
Sam Harris initially worked as a playworker at CEDA, before becoming a playleader and then working his way up to lead CEDA’s Children’s Services. Sam did lots of research and training, and tried out new ideas. He realised that some of the typical techniques used to engage non-responding children, or to calm down agitated and aggressive behaviours, often didn’t work. Children had often had been excluded from other settings, and some had been diagnosed with autism or ADHD. Sam explored new ways to communicate and engage with the children, and developed new de-escalation or “calming down” techniques, based on his knowledge, understanding and training. BISnet is interested in concentrating on a young person’s strengths, and supporting the with the things they find difficult, which leads to a reduction in the behaviours others have found challenging. Sam started running workshops to share his ideas and experiences with parents, and they are now recognised locally as being helpful in offering ways parents can support their neurodiverse children, based on their needs, rather than society’s expectations.
What Sam’s training taught me
Recently, I remembered a time when my sons had all come home from school with headlice. Out came the nitcomb, and two of my three sons sat patiently while I removed them. My autistic son, however, hated the sensation of the nitcomb on his head, and refused to sit still. My response to this was to physically hold him, and try and remove as many nits as possible, while he squirmed, screamed and sobbed. I was doing the best I could, but now I would approach things very differently. I look back and recall how anxious I had felt, with thoughts running through my head like “I have to get rid of the lice”, “I’m a bad mother if I don’t get rid of the lice” and “he’s got to allow me to do this”. I see now that those were opinions, not facts. It’s reasonable enough to do all you can to prevent the spread of lice, both to your child and from your child, and no parent would want to leave them to multiply on their son’s head. There was, though, no need to do this immediately and with force. Thinking back, I could have given my son information and choices, explaining to him the different ways of getting rid of lice, using medicated liquids, shaving off all his hair, or nit combing, – and then let him make a choice which method he would prefer. It is hard for a parent to pause and take a breath, when they feel their child is being unreasonable. Ideas of “parents being in charge” and “children needing good discipline” abound – in our society and in our brains. I’m not “beating myself up” for dealing with the situation the way I did, although I regret the distress it caused my son at the time. But I am grateful that I’ve had the opportunity to learn a variety of new strategies since (from Sam, Howard, and other parents at BISnet events). Learning a strategy is, of course, just the first step, they need to be tried out, practised, adjusted, and sometimes habits of a lifetime need to be unlearned.
I’m a talkative person, and my instinct is to chat to people, to welcome them, get to know them, and to reassure them when they are anxious. For my son, this is the last thing he needs when he is agitated. A barrage of “helpful” suggestions and comments are very unhelpful to him. I leant form Sam the need to “zip my lips”, and that “less is more”. Remaining quiet, and a quietly voiced observation such as “I can see this is upsetting you” has proved to be a successful first stage in resolving issues. Though it’s surprising how hard I find this! Once, I was sitting next to my son on a bench, while he loaded up maps on his phone to try and find where he needed to go. Peering over his shoulder, and speaking above the noise of the crowded street, I suggested a couple of different routes. He shouted at me to “shut up” and said he couldn’t think with my “vile piercing voice” in his ear. Recalling what Sam had said, I quietly moved across the bench to sit back to back with my son. This gave him the security of knowing I was there if he needed me, but made it much easier for me to keep quiet. After a few minutes we were able to carry on our way, in marked contrast to previous occasions, when things had escalated into aggression and meltdown.
I think more carefully now before I intervene in my son’s behaviour.When he is stressed, he will sometimes go and stand right up next to a wall, his face towards it and nearly touching. It looks odd. It is unusual. But it’s not hurting anybody. My need for him to “stop this behaviour” or “come and sit down” when we were in a cafe or restaurant, was about my social embarrassment, and my need for my son to “be normal”. It’s pretty liberating to ditch these feelings and ideas, and save interventions for when they are needed for safety or wellbeing. Listening and talking with other parents in BISnet sessions has given me the confidence to prioritise supporting my son over meeting social expectations.