‘Distant stories’: This alternative to ‘social stories’ might help PDAers negotiate difficult emotional/social situations
This blog is also available as a YouTube video:
https://youtube.com/watch?v=LxZ5iWb2HkE%3Fsi%3Djed4UVa-TcPJJoqq
When I first started trying to help my PDA-autistic child negotiate friendship issues at school, bath and brush their teeth and hair, and stop hitting, I drew on one of the tools I know from my work with autistic children: social stories (https://www.autism.org.uk/advice-and-guidance/topics/communication/communication-tools/social-stories-and-comic-strip-coversations). Social stories are used widely in homes, schools and therapy spaces, and carefully provide a map for social scenarios – often using pictures – with the idea that they help to break down complex scenarios into doable steps. Social stories can be incredibly useful for many autistic kids in terms of helping them manage uncertainty by planning out their day, outlining ideas for how to make a friend in the playground, or providing the steps necessary to travel on a bus, or to cook something. But it just didn’t work for my child, and at the time, I didn’t understand why.
PDA is a form of autism, initially descibed by developmental psychologist Elizabeth Newson, which features ‘extreme demand avoidance’. The acronym stands for ‘pathological demand avoidance’, but a less pathologising and perhaps more meaningful phrase adopted within the PDA community is ‘persistent demand for autonomy’. Parent coach and researcher Casey Ehrlich calls PDA a ‘nervous system disability’, where fight or flight responses can be triggered by demands – or to put it another way, a perceived loss of autonomy. There is more information on the PDA Society website (pdasociety.org.uk) and at Casey Ehrlich’s website (www.atpeaceparents.com; also on Instagram and Facebook). I think in the case of my child, social stories were just too much of a demand. They felt patronising, and too didactic – too imperative. We know that declarative, rather than imperative language can help PDA people feel less ‘told’ and more that there is a choice to engage with something (eg ‘I’m wearing a coat- it looks cold out’ feels less imperative than ‘put your coat on!’) Linda Murphy has written a brilliant handbook for parents and teachers on using declarative language (https://www.declarativelanguage.com/). So- for my PDAer, the social story approach felt too imperative and pressurising, espeially along-side the stress of coping with the sensory and receptive linguistic processing demands of sitting down and listening to somebody talking through a social story.
I became really worried when my child was five years old, and the hitting and spitting was constant. I had persistent eye infections from the spitting, and constant pain in my knees from being punched in the kneecaps. I had neck pain from being crashed into every time I sat on the sofa. My kid had also started biting people on the leg under the dinner table, and sometimes hitting people on the head with a heavy metal toy bus – also at mealtimes. This was before I understood how dysregulated and out of control it felt for my kid to hear multiple people talking in a room, so I hadn’t reduced that demand yet. And I hadn’t yet understood that sitting down for a meal could also be a huge demand – the food, the talk, the turn-taking, and the social rules were all just too much. But I’d tried sticker charts; consequences; 123 Magic; explaining that being hit hurt me; providing a cushion to hit; extensive sessions on a trampoline; a game where they could run, leap and crash into cushions; and then, as I became more desperate, a warning that they could get into trouble for hitting as they got older. If I cried out in pain they’d get upset with me ‘for shouting’ at them, and couldn’t seem to make the connection with the pain just caused by their own hand. I was baffled, because they could be very empathic and loving, and I knew it wasn’t that they didn’t care. Their view was that even as an adult, everyone would understand that they couldn’t stop hitting because they are autistic. Anyway, I thought I’d try a social story, and that didn’t work either.
One day they were having a bath (before they stopped agreeing to baths!) and I started telling a made-up story about some kid I used to know when I was at school. They love hearing about my childhood, so this was something I often did at bathtime as a distraction technique. On this occasion, I told a story about this child who couldn’t stop hitting, and eventually at the age of 14 the police were called and gave her a big telling off. My kid’s eyes were wide: ‘didn’t they understand it’s not her fault because she’s autistic’? I said that unfortunately, no, they did not understand. My kid stared slowly into the middle distance with great concern. I felt they were having some kind of epiphany.
The next day my kid asked me if I would be able to explain to police that they are autistic if they got into trouble for hitting someone. I said of course I’d always support and advocate for them but that this might not prevent people from being upset with them for hitting. That was the day the hitting went from ten times a day to perhaps once a fortnight.
Since then, I’ve used the strategy to help my kid work out many things, including playground friendship issues; to understand the reason we need sleep; to support their feelings around my separation from their other parent; and to be ok with the fact that adults need their own friends to talk to sometimes.
Stories are useful for humans in terms of making sense of the world. I’ve seen a few things online about how it’s useful to think of some autistic people as being ‘Gestalt’ cognitive and linguistic processors (often also a source of incredibly fast and deep understanding of complex systems, such as computer programming). One theory I am considering is that perhaps this strategy helps Gestalt thinkers because it presents a problem in its whole-story, big-picture form, rather than as the step-by-step approach built into the ‘social story’ method. Maybe it helps to manage the intolerance of uncertainty woven into the experience of anxiety in autistic people. It reminds me of one of my other kids who used to watch the ends of movies before they started, to avoid being upset by a sad ending. I also think the approach helps with imagining what culd otherwise be abstract scenarios and consequences. And distancing the scenario by talking about some random kid from the past might help with the shame and sensitivity often felt in PDA.
The method:
1.choose a situation that you’re stuck with – something that is social and emotional in nature. It might be that a parent has to go away for a week and they miss them, or someone has passed away and they’re very sad, or there has been an argument in the playground and it’s making them feel very anxious about school, or they are fearful about going to the doctor.
2. wait for a moment when they are regulated and busy with something- playing with water, or walking in the woods, or riding in the car
3. tell a story about some kid you used to know when you were at school, or a friend of a friend. The story needs to be about a very simlar scenario to the one you’re dealing with, but not so identical that it feels it’s about them. It needs to be distant in terms of people and time (‘distancing’ is a well known therapeutic strategy for managing anxiety). I know I’ve cracked it when my kid says ‘that kind of happened to me too!’ Tell the story all the way to the resolution. Explain the emotion the person felt, and the strategy they used to deal with the emotion, or the difficult social scenario, and how things ended up when the situation was finished.
4. wait at least 24 hours and listen out for your kid ‘s related questions. Just answer them casually without making it about them.
5. tell another story a few days later, jsut to consolidate the learning
I hope that what I’m thinking of as ‘Distant Stories’ might help a few other people create some useful shifts. Have a try with your child, and let me know how it goes in the comments sections below.