Resources

The following is a summary of Ruth Fidler's talk “Engaging children with PDA in learning & promoting their emotional wellbeing” at the PDA Society Conference in Birmingham on 18th April 2018

Ruth began by acknowledging the difficulties parents and individuals with PDA faced to attend the conference and thanked everyone for being there.

Meeting the educational needs of children with PDA

Ruth explained that the starting point in meeting the educational needs of children with PDA is to:
understand the experiences, perspectives and development of the child
recognise the perspective of the adult(s) living and working with that child
and to integrate those two elements. It is also crucial that the adults who are living and working with a child work closely with each other and in negotiating with the child.

She said the most important thing about a successful education placement is the people who work there. If you can get the right attitudes and ethos within the staff, who can in turn work collaboratively with the children and their families, it stands a much higher chance of being a successful placement.

Other characteristics for a successful school for children with PDA include:

• Genuine commitment to including the child within the school community, in a way that works on the child’s worst days as well as on their best days
• Strong support from school leadership who understand the nature of children with PDA
• Individualised classroom practice by classroom practitioners
• Positive, creative and flexible approaches/attitudes across the whole organisation (in every aspect of the organisation and the individuals who work there)
• Commitment to working closely and openly with families
• Understanding the individual child and meeting their individual needs (not treating all children the same, with the same strategies)
• In collaborating with families it helps for the school to:
  • Understand the unique character of the family
  • Listen to and believe parents’ stories as part of a holistic understanding
  • Work with the whole family to overcome any previous difficult experiences they may have had with school or professional involvement and spend time building a relationship with them. ​
• In collaborating with other professionals, the school can:
  • Find adequate time to liaise with other adults involved (including parents and other family members)
  • Try to encourage and support other professionals to attend key meetings.
  • Appreciate how other services operate in order to work collaboratively and supportively together
  • Develop systems that feed into things that improve long-term outcomes for the child’s future life as an adult.

In collaborating with schools, it can also really help if families:

• Communicate openly and regularly with schools - think about what your preferred means of communication is (email, phone call, face-to-face) and maintain that contact
• Do what they can to discuss concerns and queries at their earliest stages so that it doesn’t grow into a bigger issue, particularly something the school may not be aware of which families see an impact from at home but the school doesn’t see
• Understand the pressures school staff are under in order to work collaboratively and supportively together
• Invest in the relationship with the school.

Strategies

In order to work collaboratively with children with PDA, Ruth first described the concept of two dials - one which measures the child’s ability to tolerate demands at any given time and one which measures the amount of demands the adult gives out.

The aim is to synchronise both dials and keep them calibrated so if the child’s tolerance increases, you can increase your demands but if their tolerance dips, you reduce your demands. This is not always possible if the demand being given out is a high priority or a non-negotiable, but once you get past that moment in time you can immediately re-calibrate your adult dial. It’s important to remember that demands which can affect a child’s tolerance levels aren’t always obvious – they can be perceived demands or demands that are generated internally by the child.

Other factors Ruth emphasised in relation to synchronising the dials were:

• It needs to be done in a context that is non-confrontational but that doesn’t mean “anything goes”
• Expectations can be disguised and reduced to a minimum but then you can start to build them back up again
• Ground-rules can be reduced by choosing non-negotiables very carefully but they then must be maintained as having no ground-rules can be anxiety provoking in itself
• Any approaches you use need to be collaborative

She explained that the aim is to achieve and maintain a healthy balance of control at home and at school. This will mean the child has more control than may be usual for a child, but it’s important to keep coming back to re-visiting how much control is enough and how much is too much in order to keep a healthy balance for everyone. It’s also necessary to get a balance of the curriculum right - the code of practice looks at what is important to a child as well as what is important for a child.

Ruth elaborated on some of the strategies used in collaborative approaches to learning (which can also be applied to parenting):

• Choosing priorities very carefully - think about:
  • What is important for the child.
  • What are the priorities for the group (class, siblings, family).
  • Where those priorities are going to feed into in terms of managing behaviour, managing emotional wellbeing and identifying areas of learning.
  • Rating priorities as high, medium or low. We are generally good at identifying high priorities but not often so good at identifying what isn’t important, or what can be let go (for now)
• Being indirect
  • Use an invitation to collaborate (but remember an invitation can be turned down, so use it with care!)
  • Reframe the language you use
  • Create a sense of alliance with your child - we’re in this together, it’s not me telling you what to do
  • Give the child choices while remaining in control of the choices you give them (like a Boots “meal deal”)
  • De-personalise something by blaming someone or something else (though at home don’t blame school or vice versa as this causes obvious problems!)
• Use visual clarification systems – but not in the same way as they are used for children with a more straightforward presentation of autism as this is too prescriptive for children with PDA and will be perceived as a demand. Use them to create some structure but flexibility within it (providing choices visually)
• Use novelty and variety - this needs to be sufficiently novel to be engaging without being so surprising that it’s alarming!
• Use personal interests to set up missions, challenges and projects to engage a child
• Use drama and role-play - be aware though that there are some children with PDA who can become so involved in a role that the line between fantasy and reality can become blurred which isn’t good for their emotional wellbeing, sense of self and personal identity
• Allow more processing time - children with PDA not only need time to process what others on the autism spectrum need time to process (sensory environment, social demands, information, the task in hand) they also need time to process whether they can cope with a demand at that time. Allowing processing time also benefits the adult as they can also use the time to think and plan and to recalibrate their own emotions.
• Reward systems don’t tend to work well for children with PDA because there are lots of demands involved, but they can occasionally be adapted and used for short periods of time for some children with PDA but with care. It’s extremely important that reward systems are not linked to ‘regulating activities’ (things which the child really enjoys doing or that help the child to be calm) because on the very day the child needs that regulating activity most, they will be least likely to gain access to it. It’s therefore necessary to provide time for regulating activities every day and think about how many simultaneous activities you are asking of the child at any given point and how many of them you can drop.
• Remember sensory sensitivities because they are likely to impact many children with PDA.
• If a strategy which has been effective for a while becomes ineffective don’t panic and don’t bin it - shelve it as you may be able to use it again or ‘rebrand’ it in the future.
• Remember raised anxiety underpins demand avoidance.
• Think very carefully about what can be done to support the child’s emotional wellbeing. Often the child experiences a big feeling which is uncomfortable and they don’t know what it is or where it’s come from and they don’t know what to do with it. It’s important to have a way of managing those difficult situations in the moment, as well as developing approaches that will promote greater self-awareness and emotional regulation. One approach Ruth described is to have personal tutorials – a designated weekly time for children to work on building emotional resilience, on developing understanding of social problem solving, how to make choices and understanding consequences.
• Understand the profile of the child who camouflages or ‘masks’ in school and then has meltdowns at home and realise that those two things are related.
• Support the child’s self esteem issues and the impact this has on their reluctance to try something new.
• Understand that children with PDA will display controlling behaviours or control routine but with a different tone to children with a more straight forward presentation of autism. The element of control and rigidity in a child with PDA is about social control (rather than about control over the details) and they may change a routine in order to maintain that social control.

Promoting emotional wellbeing

Ruth highlighted some pointers for promoting a child’s emotional wellbeing (which can be applied at school and at home):

• Recognise anxiety - think about the different ways anxiety can present. Some children might be explosive, others might shutdown - but a similar anxiety response is happening within them and we need to look for early signs of that anxiety through signals which show a change in the child (becoming much quieter or much more talkative or socially dominating are examples). A good starting point is to think about what is ”ordinary” for each particular child so you can recognise more easily what is outside of ordinary for that individual
• Carefully balance the experiences offered to a child with PDA. Risk taking for example - some risk taking is needed for the child to be able to push their boundaries and learn something new as well as learn the difference between a good decision and a bad decision
• Help the child to manage social media, in particular help them to understand that social media life isn’t a person’s real life
• Balance stress – it’s ok to be a bit stressed about something because you’re pushing yourself a little bit
• Help the child to manage their free-time and use it constructively
• Help the child to get enough, but not too much, sleep and leisure time
• Balance academic learning with personalised development (building self-awareness and emotional wellbeing etc.)
• Balance schedules to allow some recovery time and time to regulate and reflect
• Make the child’s attendance and engagement with school sustainable by having a flexible approach to them coming to school as well as a flexible approach to what they do when they arrive, while they are there and the demands on them.

Ruth finished her talk by reminding parents to be kinder to themselves and to try and boost their own emotional wellbeing as well as their child’s. She said that managing the emotional wellbeing of the whole family may start with the child with PDA due to their complex needs, but that it needs to encompass the whole family including parents.