Labels and learning with Pathological Demand Avoidance

This week has seen uproar in the PDA and Autism communities after Jo Frost, aka Supernanny, decided to publish a meme on her social media accounts. 'You didn't read it properly' is the only message that came back from her after hundreds of parents tried to point out the harm she was doing to many neurodivergent individuals, with her ignorant comments about labelling children. The irony is that the label 'naughty' that she seems to be in favour of is far more harmful to a child than a diagnosis or an understanding of how their brain works. I quickly made some basic edits to her image that showed my initial reaction:

The text on the original image reads "Today in the 21st century people want to banish the word "NAUGHTY". They say it is a negative word to describe a child's behaviour. Yet we want to desperately LABEL our children ADD, ADHD, ODD and every other ABCD." I edited it with a cross through the word 'label', a line through 'want to desperately', and I added the word 'no' at the top, and NOT LABELS, SIGNPOSTS at the side, and an extra box stating I didn't desperately want to 'label' my child with anything. 

There were other words to accompany the picture but they didn't really seem to match up. I'd urge you to read the original post on Facebook so that you can draw your own conclusions. So many comments there explained how this harmful this text was so I won't go into lots of detail here. I've written posts on my blog before about Supernanny and how her methods would not have worked with our PDA girl, including this one titled Challenging behaviour and PDA: Does Tough Love work? 

Today another old blog post popped up in my Facebook memories and this one made me smile. It was about the time when Sasha learnt to swim underwater. It was relevant to my thoughts about what's been going on in our house more recently, in terms of Pathological Demand Avoidance and learning.

In my post, I talked about how we had tried swimming lessons for Sasha from quite a young age but that we had had 'limited success'. By that I meant that Sasha loved being in the water but she didn't appear to love being told what to do. In fact listening to instructions, whether that was as part of a group or individually, always seemed to be too difficult for Sasha.

It was some years after Sasha's diagnosis when I discovered that many parents of autistic children begin their 'journey' with their children being referred for hearing checks. When Sasha was younger I would joke that there was nothing wrong with her hearing because she could hear a chocolate bar wrapper crinkle from the next room. Most of the time though, it felt as if she wasn't taking notice or listening to us parents, or to any teachers or other authority figures. We hadn't experienced this with our first-born, who seemed to instinctively know when she was expected to pay attention to anyone attempting to impart information to her.

On their own terms

My post went on to talk about how Sasha eventually managed to teach herself to swim underwater, around the age of seven. 'On her own terms' is a phrase that springs to mind. This phrase about what/how/when Sasha does anything has been repeated often, in all of the reports about her, dating back to when she was very young. It was noted by the paediatrician, school staff, educational psychologists, speech therapists, Great Ormond Street Hospital... basically pretty much anyone who has seen her has recognised and accepted this characteristic of hers. Apart from the last school, but the least said about that the better for now or this post will end up way too long.

Most, if not all, of what Sasha has learnt in life has been learnt at the time when she was ready and open to learning it. Other people's timescales and agendas don't mean much to her. She once expressed to me that being forced was not fun. I'm not talking about physical force here. Physical force has never been used, possibly because Sasha's anxiety was clear to see well before that point was ever reached. No-one has successfully forced her to do anything she wasn't ready for, whether that was toilet training, learning to swim or being at school - and note how I don't say anything she doesn't want to do. Because it's not about wanting. 

Can't not won't

There are plenty of everyday things that Sasha wants to do but finds too difficult, too overwhelming. Such as going to school, being outside and having friends. And, as she has just told me, going to visit a country with snow because she is longing to simply play in it again, but she can't because the thought of flying petrifies her. As she said in her own video about her school experiences, it's not that she hasn't tried, in terms of the school situation. Sometimes it's about anxiety, sometimes it's about lacking the skills to 'fit in' with what society expects, sometimes it's both. But very rarely is it about not wanting to, depsite what others might think by glancing at the surface. It's a case of can't, not won't.

Sasha doesn't want to be taught by other people. She wants to be in control of her own learning. This doesn't mean that nobody can teach her anything, it means that teaching has to be delivered in a way that suits her brain, at a time that is right for her. That means she needs it to be fun, non-serious, and in a non-demandy manner, about topics that interest her. She has lots of interests and they are very often lifelong but come and go from the forefront in phases. So although Splatoon was flavour of the month in September due to a new release, there would be no point talking to her about it again now, or until she has found her own way back to being immersed in it. That will happen at some point, of that I'm sure, we can just never tell exactly when it will be.

For the past few months she has been writing (typing) fiction about two of her favourite shows, Amphibia and Encanto. She is not interested in watching anything with real people in (other than You've Been Framed, a lifelong favourite) but certain animations grab her attention - Steven Universe was a big hit previously and The Owl House is another one more recently. On YouTube she watches a mix of animators talking about her favourite shows and animators talking about more general life issues. From them, she has actually learnt much about life! 

Sometimes she will say that she has been brought up by the internet, which I hesitate to repeat because of course that is not what I had in mind when I became a parent.... it's not totally true either. She was at a mainstream school until the age of ten and did another (almost) full year after that, so there were outside influences, as well as input from her parents, that she seems to have conveniently forgotten about. Today we had a (brief, as always) discussion which she ended almost as soon as it started because she doesn't like 'serious talks'. She was expressing to me, in a way that not many other people would understand, that she had had enough of watching YouTube on the sofa lately, but that she felt unable to get up and get on with anything else. 

I lightheartedly mentioned about how I would have loved to have been her 'teacher' and we could have explored any topics she wanted together. I have suggested perviously that she could have even taught me. But none of this was possible, because she needs to learn on her own terms, at her own pace. But I refuse to be made to feel bad or guilty about our situation when there are others who have met our daughter who have been totally unable to teach her anything.....

Resources for educators

School eventually ended up being a place our daughter couldn't attend, despite wanting to. Other PDA children might be able to manage for longer, or in different settings, but a lot depends on the flexibility and understanding of the people around them. Those who are willing to listen and learn, and use the suggested PDA strategies, will have more success than those who believe PDA children are just being naughty.

This mind map, created by George Timlin in 2008, is a very helpful tool and worth sharing with educators. It can be downloaded via the PDA Society here: www.pdasociety.org.uk/resources/mind-map-for-schools

The PDA Society has many other resources for educators on their website and I recommend their page Information for education professionals as a starting point. I also highly recommend reading the summary of Ruth Fidler's talk on engaging children in learning. Ruth has worked closely with Phil Christie for many years and both have continued the great work of Elizabeth Newson. Their book Understanding Pathological Demand Avoidance Syndrome in Children (published in 2012) is the go-to book for learning more about PDA, and one I return to time and time again as it shares examples of children who are like my daughter. Children who (I'm guessing) Supernanny would not have the faintest idea of how to support.

There are so many quotes from this book I would love to share but this post is already too long! The following quote towards the end of the book jumped out at me tonight:

Children on the autism spectrum often show more challenging behaviours than children with other types of additional needs, and their parents and siblings may have higher levels of stress. Parents frequently feel that the needs of the child and the demands that they place on them as a family aren’t fully recognised, particularly when the child has comparatively good expressive language. This is especially the case for parents of children with PDA, who are less likely to have their needs understood and more likely to face misinterpretation of the child’s condition from both professionals and others.

I also love the following words, taken from a document titled "Educational and Handling Guidelines for Children with Pathological Demand Avoidance Syndrome", written by Professor Elizabeth Newson in consultation with Phil Christie and the staff of Sutherland House School. I think they sum up PDA perfectly:

However great the stresses of finding ways to teach a child with PDA effectively, they are nowhere near the stresses that families have to cope with; and one of the biggest stresses on families is the fear that the school will give up on their child. You can make an enormous difference, not just in helping the child to tolerate demands and to learn, but in enabling parents to meet the child’s continuing needs at the same time as creating a happy family life for brothers and sisters.

Whatever the difficulties, this is probably the most interesting and potentially rewarding child you will ever meet, who will challenge your ingenuity and flexibility every working day. This can be a growth experience for you and for your professional skills. One head teacher said ‘We never realised how interesting she was until after she’d left us, and we missed her’, reflecting perhaps the difficulties of having had to work without the support of guidelines.