Social imagination and judging the #JudgeyFace 

The National Autistic Society’s recent Twitter campaign aims to highlight how autistic people often receive judgement and scorn from members of the public. An array of celebrities, autism advocates and ordinary people, some autistic, many not, have shared pictures of their own judgey faces.

The judgey faces on display are like an homage to Kenneth Williams. But it made me think about my own experiences in public, particularly as a parent to a child who can display unusual, challenging and somewhat bizarre behaviours.

Apart from my teen years living in a small town where looks of disapproval were smugly satisfying, much of my life has been spent avoiding being noticed. I’ve mostly managed to escape unwanted judgey faces. Occasionally I forget to filter my thoughts and say something which raises eyebrows or elicits an exclamation of shock. I don’t always notice, however, as most people’s facial expressions aren’t very obvious or consistent.

Struggling to read facial expressions is fairly central to the the ‘social imagination’ part of the autism triad. Social imagination is essentially the ability to understand what another person might be thinking or feeling without them explicitly telling you. Autistic people often ‘fail’ standard tests devised to assess social imagination. This is often mistaken for a lack of empathy.

I really struggle with the claim that autistic people lack empathy. I may not read other people in the same way as a neurotypical person, I may not show the same visible emotional response in the expected neurotypical manner, but it doesn’t mean I lack empathy. My strong sense of justice and fairness wouldn’t exist without empathy.

I cannot help but wonder if it isn’t the neurotypicals amongst us who have the greatest empathy deficit. It is almost always neurotypical people, mostly adults, who judge behaviours they don’t understand. It is almost always an average, ordinary sort of person who makes a judgey face.

Behind the judgey face is often a person who hasn’t experienced a meltdown, hasn’t parented a child who stims, has never felt disorientated and overwhelmed by lighting, noise or smells, who isn’t autistic. It is a person who cannot comprehend or imagine any reason for the behaviour beyond ‘naughty, spoilt, badly parented’.

The judgey faced person’s frame of reference for such behaviour is so narrow, so lacking in imagination, that they don’t imagine other possibilities. It makes me wonder who really lacks imagination.

A great advantage of being an autistic parent of an autistic child is that I’m largely oblivious to the reactions of witnesses to my son’s public displays of autism. Alongside not noticing any judgey faces, I become hyperfocused on the situation at hand. Random strangers, judgey faced or not, become blurred background matter.

This makes me think that the campaign is primarily aimed at supporting neurotypical parents and carers. It does little for me as an autistic parent. By not noticing judgey faces in real life, they don’t matter to me. Except as funny faces.

Performing normal

I am beginning to think that us late diagnosed autistic adults deserve Oscars and BAFTAs for our performances. We study our roles and learn our parts with great dedication. We are method acting every day. We knock spots off Daniel Day-Lewis. We immerse ourselves in the worlds of those we seek to emulate. We often maintain the role every waking hour. We mostly do it without even noticing. We work hard to perform normal. We are unconsciously competent.

Until we can’t do it any more.

It starts in childhood and probably never really ends. Even when we have our autistic epiphany it’s a hard habit to break. It can be a useful skill if we use it wisely. It’s like an ultimate special talent. At the height of our performance career we slip chameleon-like among social worlds, studying our characters, always studying, trying to be better actors, better characters.

But over-use comes with a price. For us, it isn’t a role which we get to leave at the end of the contract. This is our life and performing normal is exhausting. Maintaining the roles we construct, often subconsciously, very often leads to our downfall. We risk losing ourselves in our performance.

If we are lucky enough to realise we are autistic, and we have sufficient resilience, confidence and support, we can free ourselves from the performance. This is where I am now. I am trying to drop the performance and be me. I have become more conscious of the roles I perform and can sense the changes from one role to another. It is unsettling and disconcerting to acknowledge the process as I shift through the social realms I inhabit and encounter. I have moments when I feel like I’m in a body-swap movie, like I am being inhabited by an interchangeable set of personalities and competencies.

Training for these roles starts from birth, we are continually measured against a set of criteria based on population averages. We are pushed to meet typical developmental milestones and encouraged to perform to the audience. We are applauded for using speech, for playing nicely, for sharing, for good manners and for following the rules. Some of us find these things harder but we learn quickly what is expected and we do our best. Even when we are teeny, we seek approval. We learn that compliance is good, challenging is bad. We are being shaped to fit the norms.

Girls are almost certainly more heavily burdened with neurotypical social, emotional and development expectations. School is where we undertake our apprenticeship. It is in school where we find our first role models, the happy social butterflies who make it all look so easy, so effortless. We try so hard to be like them. We might copy their interests, their style, their mannerisms as we desperately try to fit in, to be normal.

Some are lucky and find a niche in adulthood where they can bloom, able to drop the performance. Many start to experience deteriorating mental health. Some, like me, muddle along, performing normal and wondering why we find life so hard, and why are we so exhausted by normal when everyone else seems fine.

Autistic realisation brings new insight. As well as being more aware that I am performing I am also more aware and, perhaps more consciously, planning and preparing for every possible encounter. Every possible social encounter has to be considered and planned for. I draw on my history, trying to learn from my mistakes. I wish I could forget all the mistakes.

I go to bed planning the next day and I wake revising and rehearsing my plans. As I drive to work I am reminding myself of the potential subject matter I might encounter and ways I can show an interest in people’s lives, because that’s normal. Has anyone been on holiday? How was the night out? Is an ailment better? How was the move? I don’t need to remember what I need to do at work as that is on my list. But I also have to maintain a virtual list of things that I should remember about people’s lives. I am mostly not interested, but I do it anyway. Performing normal means being interested in other people and the trivialities of life.

Life is a long list of encounters, each with different expectations, some with very subtle differences. Lots of rules. Lots of roles.

In a typical day at work I have to adjust to the different social expectations of my immediate colleagues, the ones I share workspace with, people I know and bump into around the building, people I don’t know who I bump into and people I don’t know who invade our workspace. I need to be able to make requests of support staff and defer to senior staff. I have to adjust for client needs, though somehow that is easier as I am in my professional role and that’s my favourite work role.

Outside of work I have different roles to perform when thanking the postman, bumping into neighbours, attending school and medical appointments and meetings. Social interaction with friends requires even more planning as I fear getting it wrong and losing friends. I have lost many wonderful friends over the years when my performance was clearly not up to scratch.

My autistic realisation has helped me be more honest both with myself and my friends. I have disclosed my autism to my immediate colleagues, and am getting better at dropping the performance and being honest about what I need. I have noticed that when I drop my performance I am more animated, I gesticulate and I am just a little bit less inhibited. I am loosening up and freeing myself.

My son’s current favourite insult is to call me ‘normal’. I am normal. Normal for me.

Managing violence (3)

Practical solutions for reducing anxiety, increasing self-regulation and managing violent behaviours

This is the third, and final, part of this series of posts exploring ways to reduce violent behaviours which present as a result of heightened anxiety. We’ve looked at what doesn’t work and we’ve made the world a better place for our children. Now we need to equip our children with the right equipment to navigate the world – the maps, tools and guidebooks which will help them face the challenges of their journey.

I do want to say though, that none of this is rocket science, there are lots of us parenting like this, I just want to explain it for people who don’t understand or who need a confidence boost.

A lot of existing strategies for helping autistic children navigate the world are, in my opinion, not helpful and are often disablist (ableist for my American readers). If a child is exhibiting autistic behaviours at school, such as harmless stimming, choosing solitude or lashing out in fear, schools almost always offer a fairly standard social skills or ’emotional literacy’ package. These interventions tend to be built on a premise of neurotypical behaviour expectations with success measured by the achievement and emulation of neurotypical norms.

My son has attended a couple of these sort of interventions, the most recent was an ’emotional literacy’ programme provided by school. He didn’t learn anything useful, but it was a handy escape from his least favourite lesson. If quantitative measures had been used to record pre- and post- programme emotional understanding and anxiety levels, his would have shown a positive change. It would have looked like a successful intervention. But it wasn’t really.  Attendance on the programme merely provided respite from a highly stressful subject. It was beneficial, but not in the way the developers of these programmes would expect.

How to develop emotional understanding

Despite my concerns around traditional ’emotional literacy’ programmes, it is important that we help our autistic children to develop their emotional understanding, expression and regulation. If we want our children to learn how to advocate for themselves they need a vocabulary to express their emotional needs.

For a long time my son’s main emotional expressions were either super-fantastic-best-day-ever or terrible-suicidal-worst-day-ever with little in between. Any vaguely happy emotion was expressed as deep joy but any vaguely uncomfortable emotion (sadness, envy, fear, hurt) would be expressed as anger. It’s not very easy to support a child where every problem is a catastrophe. And before we even started to name emotions we needed to get to grips with the nuance of emotions, the shades of grey in between the extremes.

Scaling and relativity

I didn’t realise at the time, but a simple scaling activity I carried out when my son was about 5 or 6 would lay the groundwork for an approach we still use today. He was having difficulty explaining pain and discomfort. It’s fairly common for autistic people to have unusual pain responses, but it’s quite hard to deal with a child when every injury or illness, however minor,  presents like the throes of death.

His interest at the time was sea creatures, so we created a 10 creature scale ranging from plankton, through shrimp, lobster, shark and others up to blue whale. He chose which creatures and he drew the pictures. We then used this scale to talk about a whole range of hypothetical injuries and were able to order them according to severity.

What this did was show how pain isn’t an absolute, that it’s all relative, and that some pain, injuries and illnesses are bigger (worse) than others, and that some are quite small and not really not very serious at all. We could talk about how his pain responses and expressions of illness were also on a scale, and look at whether they were proportionate reactions. Instead of asking ‘are you making a mountain out of a molehill?’ I would ask ‘are you making a blue whale out of a plankton?’.

Over time the scale became a general scale for assessing the severity of any problem and his reactions and responses. Using logic has been important. Sometimes he can be talked out of a rage by returning to this simple scaling. Mostly now we use numbers instead of sea creatures. It doesn’t require him to recognise or name emotions, which remains difficult for him, but it gives a way to express himself and explain how serious something is in a way that’s fairly easily understood.

Note to schools: if parents have found an effective way to support their child in recognising and expressing their emotional needs, please use it. Don’t assume your costly emotional literacy programme is better because it’s been validated. Also, don’t assume that what parents are doing isn’t as valid as your programmes. I later realised that my make-it-up-as-I-go-along scaling exercises have got an evidence base too:

Alert Programme – this is a short intervention programme usually run by Occupational Therapists using sensory techniques to manage concentration, alertness and mood. The programme is reliant on a ‘body as an engine’ analogy and the need to keep our engine running well, but accepting that sometimes we need our engines to slow down and sometimes they need to speed up. A speedometer is used as a scale. The child learns how to monitor their engine (body) and what can help change their engine speed through a series of sensory activities.

The Incredible 5-Point Scale – uses scaling as a way to address a whole range of behaviours. I looked at this after we had been using scales for a few years. It’s a little prescriptive for me, but there’s a lot of sample scales on the internet which are worth a look.

Solution-focused (brief) therapy – this is a therapeutic approach which builds on pre-existing skills and looks for solutions to problems. Part of the process is scaling as a way to break down progress towards a solution into smaller achievable steps. The language of solution-focused therapy is useful because it fosters confidence and self-belief.

If my son is having a ‘bad day’ I might ask him ‘if a really bad day is 0 and a really good day is 10, where are you now?’, if he answers ‘3’ I would ask ‘what could make it a 4?’ And we would try to do that. I try not to give him the answers and I try to remain forward thinking. However, without having done the earlier scales of sea creatures to explore pain and illness, which is much more tangible than these pesky emotions, I think this approach would have been too abstract. Starting with the body’s physical expressions made it easier to get to grips with emotional expression.

Recognising emotions

One of the problems with my son struggling to recognise or express anything but the extremes of emotions is that it is harder to take early action to prevent the more extreme reactions. If you are not aware that you are getting more anxious until you lose your temper or have a meltdown, it’s impossible to either ask for help or take action to address the problem.

In conjunction with the scaling exercises and discussions we focused on the physiological signs of the important emotions. Moving away from describing emotions in the abstract and toward describing how they make your body actually feel was a helpful step. It’s worth noting that as well as autistic people often having unusual pain responses this also applies to bodily sensations, including temperature regulation, hunger, thirst and the need to go to the toilet.

Most people, neurotypical, autistic and everyone else, get irritable when they’re too hot, hungry or unable to get to a toilet. Imagine having that sense of rising irritability but having no idea why. It can take me several horrible hours to work out the reason why I feel grumpy and fractious, and I’ve had over 40 years experience as a human. Our children are still in the very early days of learning this stuff and it’s up to us to help.

We need to support our children to recognise their early warning signs, and give them a way to assess their level of comfort/discomfort before they explode. Talking openly and honestly about what we find overwhelming can help our children spot their own triggers and patterns. When things are calm we can talk about what happened and what could have helped.

Keeping a diary is probably very useful but I’m too disorganised to do this. Slowly my son is developing his own mental checklists and escape plans. As he learns more about the early signs he gets better at responding to them. What started with me doing most of the thinking and puzzling has slowly morphed into him doing more of it for himself.

Note to schools: even the most verbose and articulate autistic children can have significant difficulties expressing their emotional and physical needs. Please listen to parents who tell you what to look out for, and actually look out for it. My son tenses, glares and growls when his anxiety is rising, he won’t use words even though he has excellent spoken language. If you take the time to intervene early, send him on an errand or let him pop outside to decompress for a bit, he might recover quickly and be able to get back on task. If you ignore the signs not only will he be unable to concentrate, but he will probably lose his temper.

Demand avoidance

A fairly common factor among children who lash out and behave violently is demand avoidance. At its most severe it is characterised by a form of autism called Pathological Demand Avoidance (PDA). PDA is underpinned by high levels of anxiety which are expressed through a need to exert control. Children with PDA will strongly resist and appear to over-react to ordinary requests and expectations.

Demand avoidance is not exclusive to PDA and many children across the autism spectrum, and with other neuro/developmental conditions, can present with demand avoidance. What can confuse parents, carers and teachers is that autistic children presenting with demand avoidance are unlikely to respond to the sort of standard approach often recommended on autism courses.

In part 2 I wrote about controlling the world, through using routines when needed but encouraging flexibility when possible. Combining the security of routines with the creative flexibility required to support demand avoidance is a tricky balancing act. Reducing and disguising demands is fundamental to parenting PDA-style. We do this by prioritising and reducing demands to an absolute minimum, and then ensuring that demands are not presented as demands.

Reducing and disguising demands

Demands can be reduced by making life easy, for example, school is packed full of demands so by getting my son’s bags and uniform ready he has more capacity left to cope with the more important demands. We reduce demands by limiting activities and expectations, allowing him as much time as possible to make his own choices about how he spends his time.

We disguise demands by using humour, novelty and indirect requests, as well as giving choices as much as possible. I try never to answer ‘no’ or frame a demand in a way that can be answered ‘no’.

A longstanding issue in our house is my son putting his shoes on in the morning before school. It dates back to when school was pretty awful and putting shoes on became the main expression of anxiety couched as demand avoidance, and would result in kicking and stamping to prevent putting shoes on. My son simultaneously wanted to go to school (because he wanted to learn and school is just what you do) and didn’t want to go (because school was unpredictable and overwhelming).

After realising that bribery, incentives and threats of sanctions didn’t work, and just made things worse, I started to be silly. I might pretend to put the shoes on myself or ask if he wanted ‘socks or shoes first?’ or forget what they were for. He’d laugh, it stopped feeling like a demand and he’d have his shoes put on. Now, as he enters his teenage years I still put his shoes on for him on the days I take him to school. He is perfectly capable of putting his shoes on, he wants to go to school, he isn’t even very anxious most days, but it’s become a game. I think it’s a way for him to have a little win before he goes to school where he faces numerous demands all day.

Note to schools: children who struggle with demands aren’t doing it to be a nuisance, they’re not spoiled brats used to getting their own way. Such children genuinely experience high levels of anxiety and this is how it is expressed. In the same way you would take the time to comfort a child crying due to their anxiety, please take the time to support those who display their anxiety in different ways. A little time thinking about how to word a request can take up a lot less of your time than demanding compliance, not getting it and then the whole thing escalating to meltdown. Pro-active support might take some time to think and do, but it is a lot less time consuming and stressful than dealing with a cycle of refusals and meltdowns.

Compromise, negotiation and problem-solving

We can help our children cope with demands by modelling and teaching compromise, negotiation and problem-solving skills. It is my view that compliance is a risky, potentially dangerous thing to aim for, and I worry about approaches built on compliance. Autistic children become autistic adults and we are vulnerable to abuse, manipulation and exploitation. We need our children to not be trained to be compliant. Our children need to be able to say ‘no’ to things they feel uncomfortable with and to be able to challenge requests and demands from people they encounter. Teaching our children positive ways to respond to such demands is a good way to help them safeguard themselves now and in the future.

One of my favourite books is Ross Greene’s ‘The Explosive Child’ and if you haven’t read it, you should. It uses a problem-solving approach which is perfect for many demand avoidant children. It is based on a premise that ‘children do well if they can’ and that it’s up to us to help our children develop the skills they need to help develop more flexible thinking. I don’t strictly follow the method (I am a little demand avoidant myself) but use a broadly similar approach. This is the book that gave me the confidence to abandon traditional reward/sanction methods and instead focus on thinking and skills acquisition.

Learning to offer a compromise or negotiate terms can be worked on any time we parents want our child to do something or they want something from us. We need to pick our moments, when our children’s anxiety is low, and create or maximise opportunities to rehearse these skills.

I started by prompting my son to offer a compromise. So, he might ask for something or to do something I’m not really keen on or it’s not the best time. Instead of me saying ‘no’ I might say ‘hmm, not sure… I want to say no but perhaps you could offer a compromise?’ and if he does, I would accept the proposed compromise as a way of showing it’s worth trying. I might model compromise by openly explaining I’m not keen on doing something he wants but that I will do it for X time or within agreed bounds.

Using this sort of approach is helpful for problem-solving too. It’s very tempting when our children present us with a problem to try to solve it for them but we need them to learn how to problem-solve for themselves. It’s up to us to show how to do this and support our children to try for themselves. Asking ‘what can we do about that?’, listening and trying whatever solutions they present, reviewing how it went and learning from it as we go.

Note to schools: demand avoidant children who are prone to inflexible thinking need opportunities to develop their problem-solving skills and the art of negotiation and compromise. If a child who is usually highly demand avoidant and oppositional tries to negotiate with you, please try to find the time to support them. They might be testing out new skills and need you to show that it’s worth it. Please also respect a child who tells you they can’t do something, don’t try to force compliance. Please use your own communication skills to find a way to negotiate or come up with a compromise.

Endnote

This series of posts started as a way to show how to manage violent behaviours in (primarily, though not exclusively) autistic children like my son. As you can see, I have barely mentioned tackling violence, and have focused on reducing anxiety and developing emotional and thinking skills. For me, tackling the violence is pointless, the violence is just a product of the anxiety, overload and not yet acquired skills.

I’ve often heard parents of autistic children justify their parenting interventions by claiming it is evidence-based. I’m not sure autistic children need evidence-based parenting any more than neurotypical children do. However, it can help to have evidence to back up why our children might need a different approach in schools, activities or therapeutic settings, which is why I have mentioned sources of evidence to back up my approach.

To an outsider, many of my interactions with my son when he is being more challenging look like I’m doing nothing, but all the ‘work’ (if you want to call it work, it’s just parenting to me) goes on behind the scenes. I’ve long stopped caring about how my parenting looks, and now only care that my son is happy and able to achieve his aspirations. It is up to me and the other people who love, care and teach him to create a platform for him to achieve this.

There is much I haven’t said and I will return to this topic again. I want to write more about meltdowns and about other strategies that have been part of our toolkit, but that’s for another day.