A-Z of Demands

Over on my Facebook page I’m starting a series called A-Z of Demands. Each day I’ll post a different letter of the alphabet, highlighting an everyday demand which, in my experience with my daughter, can trigger extreme demand avoidance and a brief description of my understanding of why. I’ll use the hashtag #AtoZofDemands so they can all easily be seen and shared.

For those of you who don’t use Facebook, I’ll also upload each day’s demand to a dedicated page on the blog called A-Z of Demands (there won’t be notifications sent to you when I do, so remember to visit the page regularly if you want to follow along).

I’m also working on an A-Z of PDA series and have a few other ideas around this theme which I’m planning to do in the future too.

Here’s the first one to get things started – A is for Agreements

A-Z of Demands - A

More information about PDA and advice on how to best support an individual with PDA is available on The PDA Society website:
> Families: https://www.pdasociety.org.uk/families/strategies
> Teachers: https://www.pdasociety.org.uk/education/teachers-guide
> Practitioners: https://www.pdasociety.org.uk/pro…/awareness-matters-booklet

 

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A note on the fear (or intolerance) of uncertainty

My beautiful girl is so stressed by the fear of uncertainty at the moment. Demand avoidance is one thing, one very difficult and challenging thing, but this is something else all together. I cannot reduce life’s uncertainties like I can reduce demands and no amount of distractions will take her mind off the uncertainty she is feeling.

She ordered a toy with some Christmas money from the internet. It’s a very special toy which she felt a strong attachment to from the moment she saw it on YouTube. We found one and ordered it but then the uncertainty began – when would it arrive? It didn’t help that this particular toy had a longer than usual wait time (7-10 days). This in itself caused a great deal of anxiety but it was the only option we had for buying this particular toy. It actually took 6 days to arrive in the end but for the whole of that time she wondered and worried about when it would arrive. Would it definitely come of the 7th day? What time of day would it arrive? Would it be there when she woke up in the morning or could it come in the evening? Would it arrive at all or get lost? What if we were out when the postman delivered it? So much uncertainty.

She didn’t sleep well for the 6 days either. She’d struggle even more than usual to fall asleep from the anticipation of whether tomorrow would be THE day (despite me reminding her it hadn’t been 7 days yet). Then she’d wake up early, hoping it was the day it would come. She even woke up one night having dreamed it had been delivered. She talked about what I should do with it if it arrived while she was asleep and then reminded me over and over. Every knock at the door had her jumping up, thinking it would be the toy and the disappointment was difficult for her to cope with when it wasn’t.

All of the uncertainty increased her anxiety through the roof and as a consequence all of her other difficulties were heightened for the 6 days. Demand avoidance, emotional dysregulation, mood swings, communication were all negatively affected.

The toy arrived yesterday and she was thrilled. Unfortunately that wasn’t enough to reduce her anxiety though and it was the most explosive day so far. I had hoped today would be different and she’d be able to start recovering from the effects of the uncertainty but it now seems she is constantly worried about this toy getting lost or stolen. I have of course reassured her that neither will happen because our house is secure and we’ll take good care not to lose it when we go out but she’s uncertain about this and keeps asking if it will be safe.

I just have to keep reassuring her and wait for her to come to the conclusion herself because in the past that is the only way she has settled over such uncertainties (becoming certain about something in her own mind) and be patient and loving with whatever comes while she gets there.

There has been interesting research by Newcastle University which concluded that intolerance of uncertainty could be the root cause of PDA anxiety and I think this could well be the case. Little Miss M needs to feel absolute certainty as well as control. I wrote A note on the need for control and certainty last year and it was helpful to read it back again this week x

A note on strategies for brushing teeth

Brushing teeth has always been a huge demand for Little Miss M, one which causes a great deal of extreme demand avoidance. A short 90 second task, which a great deal of us do without any difficulty or thought, has her anxiety and fight, flight or freeze mode going through the roof because it is something we are told we MUST do each and every day and with PDA, MUST is something the brain fears. When PDA wasn’t on our radar, we tried sticker charts and rewards and we told her the reality of what would happen if she didn’t look after her teeth and although she clearly didn’t want to have unhealthy teeth and wanted to keep them clean, she just couldn’t bring herself to brush them, even once a day, let alone twice and if pushed her anxiety would escalate quickly. Little did we know that we were making it an even bigger demand for her by doing these things as she felt huge expectations from us to comply. It’s been the cause of a lot of worry and stress for us as parents and the cause of a lot of stress and anxiety for her. I thought I’d share with you though what has helped us to delicately balance the need for her to have healthy teeth against the anxiety and demand avoidance teeth brushing causes her…

We’ve tried every type of toothbrush going and have found an Oral B round head electric toothbrush has the most success, not only because Little Miss M likes that it does the brushing part but because the brush area is small and touching less of her teeth than a manual one (as sensory sensitivity plays a part in her avoidance too).

Another hurdle we had to overcome was the taste of the toothpaste. She has a very limited diet and rarely eats strong flavours and disliked the taste of mint from the beginning. We’ve tried a variety of different flavours and she found them all to be too strong in taste for her. She now uses OraNurse unflavoured, non-foaming toothpaste and this has made such a difference to her ability to tolerate teeth brushing.

We do whatever we can to distract her from the fear of the demand to brush her teeth so avoidance can be bypassed. At the moment we listen to her choice of pop song while she and I brush together and that is proving to be quite a good distraction. We have to change it up all the time though when novelty wears off. We’ve role-played dentists or other scenarios of her choice where I brush her teeth, I’ve told her stories while she brushes, I’ve done funny voices, made up silly songs, we’ve pretended we’re on a quest and teeth brushing is a task we need to complete to fulfil the quest, we gave the toothbrush a name (Mrs Toothbrush) and personality and I did its voice and asked her questions about her day while brushing (she formed quite a bond with Mrs Toothbrush who even came on days out with us for a while), we’ve watched TV while brushing, brushed in every room of the house, had a favourite toy do the brushing, brushed without toothpaste for a time, all sorts of things which appeal to her and distract her from the fear response her brain has to the demand. We re-visit some of them now and again too as they can work again after a while of not doing them.  She still negotiates and it can take rather a long time to get the task done and there are often days when she is completely avoidant but doing something fun to distract her is her best chance of being able to brush her teeth, along with us remaining patient and flexible. 

We also only aim to brush teeth once a day but don’t insist she does it when anxiety is really high or when a distraction doesn’t work and demand avoidance escalates (we may return and try again later but we remain flexible). We don’t have a set time it has to be done, nor do we make it something which has to be done before going out or going to bed as it was preventing us from leaving the house and going to bed. It’s just something that is done at some point in the day if we can and we’ve found this reduces how big a demand it feels.

It can still be hard not to stress over, when we’ve had a run of difficult days and not managed it, but I try not to otherwise she feels my stress and it becomes an even bigger demand and her avoidance becomes stronger. We’re fortunate that Little Miss M will visit the dentist so we make sure she has regular check-ups which help to ease my worry.

I hope this has been helpful and given others some ideas to try around this incredibly difficult every-day task. Do you have any teeth brushing tips or ideas not mentioned? If so, feel free to add them to the comments as it’s great to have more strategies in our pockets, ready to try.

The Wizard’s Wish or How He Made The Yuckies Go Away – A book for children about Emotional Freedom Techniques

I’ve been sitting on this book recommendation for a while now, waiting for the right time to introduce it to Little Miss M. The wrong time would only trigger demand avoidance and potentially close the door to introducing it forever (or at least a very long time because of the fear associated with it). After our conversation this week about anger and masking, she’s open to ideas about how she can safely express her feelings so now felt the right time.

I’ve learnt about Emotional Freedom Techniques (EFT) or tapping as it’s also known from the wonderful Lindsay in her Facebook group Peace With PDA and have seen first-hand how effective tapping can be since using it on myself. If an emotion is bothering me or holding me back, I tap on certain energy points, acknowledging how I feel, accepting that that feeling is perfectly natural and use positive words or affirmation to free myself from the negative effect of the emotion and always feel much better. I also find it really effective in bringing clarity to a situation.

Peace With PDA is predominantly a group for helping parents to use EFT to manage their own emotions and difficulties but Lindsay has kindly touched on using EFT with children as well and recommended this book as a way of introducing them to the concept of tapping.

I downloaded the e-book from Amazon onto Little Miss M’s tablet today, a bargain at £2.21. You can also buy it in print and although she loves books, I thought having it on her tablet would make it even more appealing to her as her tablet is one of her favourite things and it’s easily assessable for her to look at wherever we are (her tablet comes everywhere with us). She was curious as to what I was doing so I told her I was downloading an e-book for her to learn about how she can magically let go of her anger and fears. She was intrigued but not yet ready to look at it (she was keen to play with Daddy though). I left it at that and contemplated whether to raise the subject again today or wait until she decided to look at it of her own accord. I gauged her mood and decided to raise it again this evening and asked her if she wanted to read it with me tonight and she said she’d like to do it there and then.

We read the story (she did the voices of the villagers and told me how I should do the wizard’s voice) and it being on her tablet worked really well as it’s somewhat of a novelty for her to read e-books. She enjoyed the story which imaginatively explained how tapping on parts of your body makes yucky feelings go away and she was really engaged with the idea of her finger being her magic wand and using the magic spell words to make the ‘Yuckies’ go away. We very briefly talked about how we could both use the magic spells the wizard taught the villagers, to help with our anger and stress and we’re going to make a map of the points to tap on tomorrow as a reminder for us both.

I’m really hoping the book has planted a seed for Little Miss M to access this simple but effective self-help tool and I’d highly recommend it to anyone looking to do similar. I’m conscious of it becoming a demand if I don’t carefully word how I encourage it’s use but am hopeful that with gentle indirect reminders of the story and how the wizard used it and lots of modelling doing it myself, she’ll start tapping away the yucky feelings she has.

A note on anger and masking by Little Miss M

Little Miss M and I had a really insightful conversation this week about a characteristic of her personality which she has been exploring a lot lately as well as anger, PDA and masking. It came from this note which she wrote for me which says “Dear Mummy, Let me tell you a secret: I am… evil! (Don’t tell anyone that I am evil – Mkay?)” and the picture is of me looking shocked. She later said I could share this by the way to help everyone understand.

Savage in me

It transpired that she didn’t really understand the true meaning of the word evil but likened it to her becoming ‘a savage’ when she is angry. She recognised that her behaviour at times is what society could class a ‘bad’ or ‘wrong’ and came to the conclusion that this meant she was evil, just like the ‘evil villains’ in films and comics. The term savage isn’t meant literally either but rather as a dramatic description of her behaviour (one of her favourite YouTubers describes his cat as a savage and I think this is where she picked it up from). For quite a while now she has loved The Joker from Batman and his side-kick Harley Quinn and has enjoyed playing the villain type character just as much as she has enjoyed playing the hero type character in games and shows she acts out. She can clearly identify with and see aspects of herself in both.

She appeared very comfortable with this misplaced evil label she had given herself despite saying she wanted to keep it a secret in her note and I felt that was because she felt really strongly that this ‘feisty’ side of her was recognised and understood. She celebrates that she is ‘different’ to the norm and we encourage her to love herself as she is, so this was obviously a side of her that she wanted to address and embrace with my help and doing so opened the door to much more insight than I would have dreamed possible at the tender age of 7.

Here’s an edited version of what she said in our conversation after we talked about that characteristic and I explained the meaning of the word evil. It’s clear to me that she is talking about masking when she says she hides inside, something she used to do up until about a year ago with regards to demand avoidance (she would mask her demand avoidance in public so she could join in with her friends at home education groups and trips). I realise now that she has clearly started to implement masking again in order to cope in public but it would seem to relate to masking her anger since recognising society’s expectations in that respect and masking her fears so they don’t prevent her from doing the things she wants to do…

“I’m not evil but I am a savage when I get angry. I get angry when things go wrong and when I can’t do things. I’m not in control of my anger, my brain controls that but I am in control of what I do when I am angry and when I’m at home it’s shouting, screaming, kicking, hitting, pushing and throwing things. When I’m in public I feel I need to hide my anger inside because I don’t want people to know how I feel because they will think that it is wrong and if I scream in public it makes me more angry. It’s like the anger and the scream collide and make the anger stronger. It’s my PDA which causes this – if you took out my brain and cut it open you would see all the different areas controlling the different things and PDA would be in the middle. It’s not just anger I hide in public, at my cousin’s party (which was back in August) my brain was really nervous because I didn’t know everyone there and I didn’t know if there would be any surprises but I hid it inside. Do you know why I smiled nicely in all the photos? It’s because I couldn’t be myself and pull funny faces or pose like I usually do because I was hiding inside. I really wanted to go to the party and would have been really sad if I couldn’t – hiding my feelings meant I could.”

I reassured her that it is not wrong to feel anger or any emotion, they are all natural reactions and I promised her I would help her find ways to safely express her anger (and all of her feelings) when they first appear rather than hiding them until they build up so much they explode, which is what inevitably happens and she said “just like Queen Elsa! I AM QUEEN ELSA – I’ve been hiding my anger from people, like she hid her magic and now I can let it go!”

 

#PDAconf Roundup

I attended the National Autistic Society’s 2017 PDA Conference and am so glad I did. So much of what was said resonated with me and I gained so much from each and every talk I attended. In the spirit of spreading awareness, here’s a roundup of my standout points and strategies from the day with all credit to named speakers, whose knowledge and understanding I found invaluable and truly inspiring. There was so much more said and context given which I haven’t include here so I’d highly recommend taking up any opportunity to attend future conferences or training events with any one of the speakers mentioned (the contact information I have about each speaker and relevant future events are listed at the bottom of this page). 

Towards a better understanding of Pathological Demand Avoidance
Phil Christie, Consultant Child Psychologist

Early on in his presentation, Phil made the point that there are implications of understanding the PDA profile for the best forms of supporting, managing and providing educational provision. “We’re not labelling children simply to have a classification system, it’s because it has implications for their management and support”. He said the ultimate reason for a correct diagnosis is to better understand and make sense of the child or adult.

He talked about the fact that a lot of children with a PDA profile get missed in terms of an ASD assessment because at first sight, at least, clinicians think they are too sociable to be seen within that profile but this seemingly better social understanding is only on the surface. And in research led by the Institute of Psychiatry in 2013, comparisons between three groups (children with PDA, those with Autism and others with Conduct Problems) found children with PDA (like those with Autism) were in the 1% of the population that has most difficulties with social interaction.

In that same comparison, the PDA group had higher levels of parent rated anxiety than both the Autism and Conduct Problems groups and were in the 2% of the population sample with the highest level of anxiety.

He talked about PDA behaviours being underpinned by anxiety and said it’s important to understand this. He said we need to understand the why as well as the what. If we don’t understand what’s causing or driving or influencing behaviours, how can we begin to develop the strategies and understand the support needed. “Sadly there are some professionals, teaching professionals and others who don’t quite grasp that the controlling behaviour is underpinned by anxiety. They see the robust elements of the child’s challenging behaviour and find that hard to understand that actually that’s a manifestation of someone in a high level of anxiety.” 

We watched part of this video in which Isaac describes the anxiety he experiences with his PDA which was incredibly insightful.

In relation to the Extreme Demand Avoidance Questionnaire (EDA-Q), Phil emphasised that it was designed as a research tool, not a clinical document but that it can be useful for a parent to complete and then used as the basis of a discussion to talk to clinicians about observations you have of your child and he would recommend doing this.

These are the key things Phil felt the research around PDA is suggesting:

  • The behavioural features of PDA are dimensional across the autism spectrum
  • The PDA profile represents a constellation of symptoms that characterises some children on the spectrum
  • PDA is comparatively rare
  • Females with ASD display more PDA features than males
  • There are parallels between features of PDA and descriptions of ODD/CD but important differences
  • More research is needed to look at aspects of PDA profile which might be found in other populations

Phil stated that PDA is best understood as part of the Autism Spectrum or one of the Autism Spectrum Conditions.

In relation to the original defining criteria for diagnosis of PDA, Phil reported that ‘passive early history’ and ‘neurological involvement’, although prevalent are not universal and felt the list needed to be looked at and reduced down to the essential. Looking at the remaining defining criteria he made the following elaborations and points about how the characteristics manifest:

Resists and avoids ordinary demands of life

Phil emphasised that the avoidance is of ordinary everyday things, not just stressful events and difficult transitions. Things like getting out of bed, brushing teeth, getting dressed, eating breakfast, leaving the house. He stressed how difficult this is for the child and family.

  • Avoidance may seem the greatest social and cognitive skill
  • Strategies of avoidance are essentially socially manipulative (or socially strategic)
  • Strategies can include:
    • Distracting adult
    • Acknowledging demand but excusing self
    • Procrastination and negotiation
    • Physically incapacitating self
    • Withdrawing into fantasy, doll play, animal play
    • Physical outburst or attacks

He talked about a child escalating through these avoidance strategies with all the everyday morning requests mentioned above and said you get a sense of how tough life is. He felt a fundamental decision that parents of children with PDA have to make at any given time is how much should I give in, in a sense, should I do that for them, allow that to happen and how much should I try and moderate the behaviour?

He advocated reaching a mutually satisfactory outcome with the child and being persistent, not insistent (by being flexible and creative in your approach and interactions).

Surface sociability (but apparent lack of sense of social identity, pride or shame)

The fact that children with PDA can at first be sociable and ‘people orientated’, may have learnt social niceties and seem well tuned into what might prove effective with a particular person, means that on first meeting, people can be very misled (including clinicians). The danger is within the first 10 to 15 minutes of meeting a child, clinicians have often made their framework and if the child is misleading them in this way, they won’t see their social difficulties.

Underneath the surface though, they’re unsubtle and social interactions can be without depth, they might be overpowering or overreacting to trivial events etc and they have a genuine difficulty seeing boundaries and taking responsibility.

He mentioned that children with PDA are comparatively good at intellectually working out how other people will feel but find it more difficult to emotionally empathise with others. It’s not true of all children and it is a dimensional concept but it’s quite a useful way of trying to understand.

Lability of mood, impulsive, led by need to control

This is common in the autism spectrum but is exceptionally pronounced in PDA.

  • Switches between moods rapidly, often for no obvious reason
  • Switching of mood may also be a response to perceived pressure
  • Activity must be on child’s terms; can change mind in an instant if suspects someone else is exerting control

An important thing to remember is not only can they lose it quite quickly but they can regain it quite quickly too which can be emotionally quite hard for the adult and can lead you to feel it’s more under the child’s control than it perhaps is.

Comfortable in role play and pretending

  • Frequently to an extreme extent and in a controlling fashion (particularly pronounced in females)
  • Often mimic and take on the roles of other people, extending and taking on their style (not just repeating)
  • At it’s extreme some children can confuse pretence and reality at times

Language delay, seems result of passivity

  • Initial delay often as a result of passivity
  • Often sudden and good degree of catch-up
  • Pragmatics not deeply disordered – more fluent eye contact and conversational skills (this is another reason children with PDA can appear misleading to clinicians)
  • Speech content often odd or bizarre

Emerging themes from clinical profiles from a speech and language point of view include:

  • Despite fluent expressive language understanding is often not so robust
  • Difficulties with time it takes to process*
  • Fluency can mislead those communicating with them and contribute to behaviour issues

*We need to remember the time it takes to process – for children with PDA it’s not just about processing and understanding what has been said to them but it’s about processing, am I able to comply at this moment in time? And a lot of the behaviours we see as outbursts happen because somebody has asked them to do something, the child’s processing, the adult moves in and repeats or re-phrases and the child is still processing.

Obsessive behaviour

  • Much of the avoidant behaviour described is carried out in a way that feels ‘obsessive’
  • Many fascinations link with pretend characters and scenarios
  • Other fascinations tend to be social, ie to do with people and their characteristics

To conclude Phil talked about needing to build on developments, insights and increasing recognition of PDA but maintain the integrity of how the condition is understood and the nature of the support that is needed by individuals. He said that children with PDA respond much better to low-arousal, non-confrontational and an indirect style but clarified that is not saying you just let the child do what they want, you choose priorities, leave those things that don’t matter for the moment and find imaginative and flexible ways of encouraging co-operation and engagement.

[Due to time constraints some slides were not covered but I thought it was worth a mention that one slide specified the need to ‘significantly improve awareness and understanding of PDA in adults.’]

“Mummy, why can’t I say yes?” A parent perspective on PDA
Becky Giles, Parent

Becky expanded on Phil’s point about good language being misleading by explaining that her daughter’s language is amazing and she said she sounds so good at speaking that you would never know that socially she was having struggles to interact at times.

She felt a diagnosis was important because although her daughter displayed many autistic traits, she’d worked out that strategies like now/next boards and rigid routines which work well for some autistic children weren’t working and were just making things worse and any strict routine she tried to put in place at home went wrong so they really needed PDA specific strategies. She also felt it was really important to have the correct diagnosis and strategies in place and to be able to explain what her daughter’s triggers were to aid the transition into secondary school which has subsequently worked really well.

Becky talked about feeling that sometimes schools tend to be almost trying too hard to find a way to get a child to do something and sometimes it’s more about letting things go a bit, backing off a bit and giving the child a bit more time to process things. 

She also said it depends on where her daughter is (in herself) at as to what they can and can’t do as a family and how the pressure to get her to agree to do the normal daily things is massive. The avoidance sometimes spreads into her avoiding things too because it’s hard work and if this happens, she said, you have to really fight it as a parent and have to be quite a strong and resilient person to do that.

Becky said they’ve found loads of positive ways forward and there is hope, it’s just finding what suits your child. Reducing demands was one of the first things she did and it really helped. “It wasn’t giving in and actually it just relieved everyone’s stress”. She focused on key points for health and wellbeing (including the wellbeing of everyone in the house) and reduced everything else down. She still has rules and consequences for unacceptable behaviour in place but by asking her daughter to do as little directly as possible it really has relieved a lot of the head-to-head arguments. Giving her time to process things and breaking tasks down into a few parts has really helped also as well as distracting at the point of demand, using physical prompts (like tapping her leg as an indication to put shoes on rather than directing asking her to), pretending not to know how to do the task and letting her take the lead with it and giving her control where possible.

Becky advised parents “Don’t worry about what other people think, I know that’s really hard to do sometimes but you know your child best, you know what works and just do the best that you can in whatever situation you’re in”.

Educational provision and teaching approaches for children with PDA
Ruth Fidler, Education Consultant
Phil Christie, Consultant Child Psychologist

Phil spoke briefly about how children with PDA require personalised learning pathways that recognise their unique and possibly changing learning patterns and a suitable school will need to have a genuine commitment to inclusion of the child, strong support from school leadership team, positive, creative and flexible outlook and a commitment to working with the family in a supportive and open partnership.

He said “As someone running a school, we went 31 years with no exclusions and my attitude is always that the time for uncertainty is the time you assess the child for admission, once they come into the school, they’re part of your school community full stop.”

He felt the starting point has to be ‘how can we work well to meet the needs of this child, not this is what we do at school’.

Ruth then presented the rest of the talk. She started by outlining that meeting the educational needs of pupils with PDA requires collaboration and an understanding of the experience of the child as well as recognising the perspective of the adult.

In relation to understanding the child’s experience as a learner, Ruth outlined some key areas:

  • They have a drive to be in control.
  • May use explosive or shutdown behaviour when things go wrong – it’s important we don’t overlook those who shutdown because they are not using behaviours that are as dramatic. Often what is happening for them emotionally is as challenging as what is happening for explosive children.
  • May slip under the radar to avoid expectations/demands.
  • Very poor self esteem and poor emotional regulation.
  • An expressed desire to be on a par with or better than others – we have to consider where does that have an impact on their engagement with learning because if you set your standard at only wanting to do something if you’re going to be brilliant, it’s really going to be a big obstacle.
  • Sensitive to real and perceived (implied) demands and it’s important to recognise the impact these have ion the child and their tolerance levels.
  • Ambivalent or torn about succeeding and enjoying an activity and if you shine a light on them doing something well they may feel uncomfortable that you have highlighted their compliance or feel an expectation to do well again or feel unable to do it as well again.
  • Variability across times and settings.
  • Very poor emotional regulation.
  • Difficulties with social skills. The adult need to play a big role in demonstrating social repair and the longevity of relationships.

In relation to understanding what is needed from the adult as a teacher (can be applied to parents/carers/all adults involved in the life of the child as well as teachers), Ruth outlined these key areas:

  • Pupils may be confusing or frustrating in their variability. Remember this is probably as confusing and frustrating for the child as it is for you.
  • Understand that demand avoidance is anxiety driven.
  • There are days when it’s not as simple as ‘can’t’ or ‘won’t’ because it’s actually that the child ‘can’t help won’t’ and remembering this can enable you to be more flexible in your approach.
  • The quality of relationships is fundamental to co-operation and to making progress – it’s really important that we invest in the quality of relationships we have with these youngsters, creating a feeling of alliance with the child – a sense of we’re in this together, not I’m the adult and you’re the child and I’m going to tell you what to do.
  • Highly individualised style – personalise what we do and how we do it.
  • Less directive and more intuitive than would be the case with typical autism.
  • Confrontation should be avoided where possible – doesn’t mean anything goes but does mean you choose very carefully where your confrontation is.
  • Expectations should be disguised and reduced to a minimum but not abandoned.
  • Ground rules need to be reduced as far as possible but collaboratively decided on then maintained.

Ruth then explained a concept of having two dials. One to represent the child’s tolerance to demands and the other to represent the amount of demands the adult is giving out (perceived (implied) demands as well as actual demands). She said the skill is in synchronising the dials so the demands the adult puts out matches the child’s tolerance to them. It’s important to stay alert to the child’s tolerance dropping at any given time so you can amend the demands. There may be times the demand is non-negotiable but instead of dropping that demand you can drop other things while you hold on to that non-negotiable.

Ruth announced that she and Phil are currently writing another PDA book specifically for educational practitioners of which details will be available soon. There are currently three books specifically about PDA available and here are the details.

She then outlined the principles of collaborative approaches to learning which are:

  • Observe and listen to the child and everyone who knows the child to understand their variability
  • Work together towards negotiated solutions
  • Personalise learning experiences
  • Modify teaching style: be flexible, indirect and adjust expectations. Be as free-flowing as possible so you can adapt to the child’s tolerance levels
  • Minimise anxiety to maximise learning opportunities as anxiety is fuelling the obstacle of co-operation
  • Monitor, reflect and review
  • Foster emotional resilience and independence proactively
  • Recognise the needs of the supporting adults

From here Ruth went through the key strategies of collaborative approaches to learning and how this actually looks in practice (again these can be applied at home as well as in school):

Choosing priorities – identify priorities for the child and the group (class or family), for right now and in the near future, work out why each thing is a priority, rate them as high, medium or low and work out strategies for how to deal with each one when they come up. A template for doing this is in the book ‘Understanding Pathological Demand Avoidance Syndrome in Children’.

Being indirect – rather than a direct demand use an invitations to collaborate – things like:

  • I wish I knew someone who could help me…
  • Oh look at that, now it’s time to do…
  • Do you want to do A, B or C first?
  • You choose, which job should I do in this task? – Getting the child to work with you by letting them choose who does what in a task. This is a great opportunity to create a sense of alliance as well as participation and engagement with learning.
  • Who’s left this here?
  • That would be a great idea for another day.
  • It would be really helpful if you could find a way to…

These in-direct routes or ‘diversions’ might seem like the long-way round to reach your destination but for some with PDA the direct route from A-B is the slowest route and a diversion can actually be achieved more quickly and happily due to their indirect nature. The skill of the adult is to creatively and kindly steer everyone in the right direction.

Socially complex language can sometimes be effective as a way of being indirect. One young person with PDA told Ruth “If a direct request is part of a normal conversation, it’s easier for me to co-operate with. If it feels a gentle question mixed in with a friendly chat it is much easier than having an instruction.”

Depersonalise the demand – say the request has come from someone else.

Giving indirect praise – as said earlier, a lot of children with PDA find praise quite uncomfortable so finding an indirect way to let them know they have done well and celebrate their achievements will help. Two examples are using code words and praising the child to someone else, in the child’s earshot so they can hear but it’s not directed at them.

Adjust expectations – sometimes the goalposts need moving to help everyone reach a satisfactory conclusion so we need to keep some flexibility.

Novelty and variety – this can work really well for children with PDA, unlike for more straightforward presentations of autism where predictability is necessary but it’s important to get the balance right between surprising and engaging the child without being alarming.

Missions, projects and challenges – capture their imagination to maintain engagement with learning by setting up missions, projects and challenges using their interests. Having several of these on the go can also allow for choice – which one do you want to work on today?

Visual clarification – can be helpful for some children with PDA but will need adapting so it’s indirect and has elements of choice.

Drama and role-play – can be an effective ‘way in’ with a child with PDA, we just have to be careful not to contribute to blurring the line between fantasy and reality for children who have difficulty differentiating the two.

Allow more processing time – we need to allow this for children with PDA, not only so they can process all of the stuff that anybody with an autism spectrum condition needs time to process but in addition, also process whether or not they can tolerate co-operating at this time. Allowing the child more processing time, gives you more time too, to think of your next step or to re-group when emotions are rising.

This all builds towards helping children to understand and recognise all of these things in themselves and Ruth shared how a young person with PDA did just that. He told her “PDA is irritating because most of the time I want to do stuff but something gives me the urge not to. If I say ‘I’m not doing it’ then I CAN’T do it because I’ve said I won’t and I can’t back down. My new technique now I’m older is to think ‘try not to say anything when I’m asked to do something’. If I can stop myself saying I won’t do it then I can leave my options open. That means I can get used to the idea of co-operating and I MIGHT be able to do it.” Allowing him the processing time he needs to do this is essential for his strategy to work.

Minimise anxiety – we need to put in strategies to minimise anxiety in order to maximise learning. This needs to be a blend of preventative measures to avoid anxiety rising and strategies that reduce anxiety as well because we can’t prevent all anxiety. It’s important to give time for regulating activities each day which are not linked to rewards because the very days they need it the most are the days they will be least able to earn it.  They need to regulate every day.

Promoting social and emotional understanding and self-awareness – with a view to developing wellbeing in the child that they can carry with them for the rest of their life. Provide a forum for appropriate discussion and learning.

Ruth noted that the positive side of risk-taking is a particularly important area to cover with the child because perfectionism tendencies can prevent the child with PDA from trying something new and is seen as a risk to them. She said “We want children to be in a situation where we are helping to facilitate their options being open and as wide as possible and not shutting things down”. 

As well as these collaborative strategies, Ruth recommended the following additional considerations:

  • Think about how many simultaneously difficult things are being asked of a child – balance the demands with the best time/day to achieve it.
  • Think about sensory sensitivities for the child.
  • If some strategies that were working become ineffective shelve them and re-use them again in the future because there was probably something around it that will appeal again.

She also highlighted that in collaboration with families, it’s important to develop a healthy balance of control and choice. She said, these are children to whom you will be giving more control than usual. However, we need to keep an open, supportive and honest dialogue with each other about how much control is helpful and healthy and how much control starts to become unhelpful and unhealthy. And it’s a conversation to keep coming back to.

Asher’s story – Film about Asher, a pupil at the NAS Robert Ogden School
Lorraine Dormand, Principal, NAS Robert Ogden School

Lorraine and Jilly (Davis) introduced Asher’s film which was amazing. Asher is a young person with PDA who choreographed a dance to tell the story of key points in her life. The film began with her talking us through the dance and explaining what each part represented and then she performed the dance to a beautiful piece of music.

It was so moving and several parts brought tears to my eyes. It was incredible how she expressed the different emotions she felt at each point and there was a marked difference in how she felt after she started at Robert Ogden School compared to life before – she was leaping across the stage and her happiness was plain to see as opposed to her being slumped on the floor and head in hands at her previous school where she was misunderstood. It really shows how important the right understanding and support is to the child and what a difference it can make to their wellbeing and what they can accomplish.

I’m delighted to say I found a link to the film on the school’s website so you can experience it for yourself by clicking here. I think you’ll agree that Asher’s passion for dance and her creativity shines through and it was wonderful to celebrate this aspect of PDA at the conference.

Me, Myself and PDA
Julia Daunt, Blogger and individual with PDA

Julia presented this talk in the style of having a conversation with Ruth Fidler which worked really well.

Julia said there are always big gaps of time between her doing something on her own the first time and when she can do them again. Most things she needs someone there with her to enable her to do something. They don’t necessarily have to do anything to help, just be there.

In order to make priority demands easier, Julia said she reduces all other demands as much as possible and needs to prepare for big demands (like being at the conference) by reducing her anxiety to as low as possible beforehand so the anxiety which comes from the demands of the event doesn’t overwhelm her. She does this by dropping all non-essential demands for days or weeks beforehand depending on what it is and how demanding it will be on her and then needs downtime to recover afterwards.

Julia said that she prioritises demands from people over everyday demands like paying bills. She said she only has so much to give and she would rather give it to people as she feels that is most important. She also said meeting demands of friends and family bring an emotional reward whereas paying bills and such like doesn’t.

Ruth and Julia both advocated for children to be enabled to manage/reduce anxiety themselves rather than relying on someone else to do it for them and that self-awareness is key.

They spoke about seeing the child as an equal as this is likely to bring the best results. Julia said she did best in an education setting where they adapted their approach so she had choice about what she did and when teachers treated her as an equal. They had a weekly timetable and she could choose when to do each piece of work and Mondays had more enticing activities like working towards The Duke of Edinburgh Award which made the start of the school week easier to attend.

As a teenager, Julia said she was developed enough to pass for an adult – she wore make up, smoked and saw herself as an adults but still loved treating her favourite soft toy as a baby and this confused people around her. She said at the time she thought of him as being really alive and she still feels a comfort from having him around all the time now.

I had the pleasure of chatting to Julia and her partner Paul during the breaks and they were both so friendly and welcoming. I really appreciated the efforts they both went to, to attend and participate in the conference. 

Differential diagnosis between PDA and attachment disorder
Dr Judy Eaton, Consultant Clinical Psychologist

(Diagnosis and Misdiagnosis – when it is not ‘just parenting’)
(Exploring how children with PDA differ from children with other difficulties PDA as an Autistic profile)

Judy began by saying “I think the message from today is to get it out there that PDA is a thing, it is important to get this diagnostic criteria sorted out so that people understand what it’s all about.” 

Judy highlighted that it’s clinicians who we need to get the message out to and in my opinion any clinician listening to her talk would have ‘got it’ – she was fantastic and clearly outlined how PDA presents as an ASD profile and why other commonly misdiagnosed conditions may exhibit similar patterns of behaviour but don’t fit or explain the child with a PDA profile. She explained the consequence of a misdiagnosis is that the child and family fail to get the support and advice needed and that strategies which are suggested are unlikely to work and can even lead to accusations of ‘poor’ or ‘neglectful’ parenting.

Common Misdiagnoses

These include:

  • Reactive Attachment Disorder
  • Developmental Trauma
  • Oppositional Defiance Disorder (ODD)
  • Emerging Personality Disorder

She explained that Reactive Attachment Disorder develops in children who have experienced ‘long standing patterns of inadequate or inconsistent care’, that Developmental Trauma is frequently used to describe the difficulties experienced by adopted/looked-after children, and that children with Oppositional Defiance Disorder have usually experienced poor or inconsistent parenting and may have spent time in care. She said if a child hasn’t had these types of environment (which is usually the case in her experience of children with PDA where parents are trying so hard) and is being diagnosed with one of these conditions, challenge it as it’s unlikely to be these kinds of difficulties.

In relation to Reactive Attachment Disorder, she also highlighted that a diagnosis of this should not be given to children who have Autism but as a lot of children with PDA are not considered for an ASD assessment because of their surface sociability etc. this is the first diagnosis a clinician often goes to.

In relation to Oppositional Defiance Disorder, she also highlighted that although there are a lot of similarities in behaviour, children with ODD often appear streetwise, usually respond to reward-based management strategies and are usually aware of social hierarchy (even if they choose to ignore it at times) whereas children with PDA are not streetwise, they are socially naïve and easily led (they may try and imitate their peers but they don’t quite get it right), they are not motivated long-term, if at all, by rewards and they don’t ‘get’ social hierarchy, they feel they are equal to adults.

In relation to girls being diagnosed with Emerging Personality Disorder, she said that behaviours are so similar between this and autism & PDA, it’s easy to see how girls with autism and especially PDA might be given the diagnosis but explained that Personality Disorder is a set of behaviours that develops in response to stress. Research suggests that some young women who have PDA but have not received the appropriate support will develop the condition. She emphasised that if you get the diagnosis right in the first place and you get the support right, you are less likely to have young women and girls develop this co-morbid condition.

PDA as an Autistic profile

Using her own research which was based on observations and data collected from 200 children who have come to her clinic for assessment in the last 2 years, Judy painted a picture of what PDA looks like and how the social communication and flexibility of thought impairments in ASD show themselves in PDA. She noted that many parents struggle to get clinicians to understand how their children actually do manifest these symptoms and inexperienced teams carrying out short 40 minute assessments and the child’s variability between settings and ability to mask mean the subtlety and complexity of their presentation can be missed. She said the difficulties are there when you can take the time to chip beneath the surface.  These are her observations: 

Communication difficulties observed in young people with PDA
Judy’s research observed that communication can be superficially good, however, when conversing, particularly in more unstructured conversations where the response is unpredictable, difficulties start to become more apparent. They rarely express any particular interest in topics raised by an adult or ask any questions and they can appear like a ‘rabbit in the headlights’ and their anxiety is often palpable. Eye contact can be reasonable, although when watched closely it is apparent that the timing is often out of sync likewise with gestures which on close examination often appear learned and almost copied.

Social Interaction difficulties observed in children PDA
Judy’s research observed that children with PDA are often initially popular when they first start school, however, their need for control often sabotages friendships. Play dates often end in disaster with meltdowns during or after and they can be very controlling of family members, often perceived as bossy or demanding.

Play and imagination in children with PDA
Judy’s research observed that pretend play can be superficially good but when watched, quickly becomes repetitive and on the child’s terms (dolls have to be placed a certain way and things done a certain way). As infants they are often reported as ‘not being bothered’ whether adults played with them. When playing with others, games CANNOT be changed and elaborate role playing is seen in some (but not all) children.

Inflexibility of Thought/Routines, Rituals
Judy’s research observed that children with PDA find it very difficult to follow routines set by others, however, many impose their own routines on family and friends. It’s often ‘their way or no way’ and this is where the ‘rigid thinking patterns’ of ASD displays.

Social Imagination
Judy’s research observed that like children with other forms of autism, children with PDA do experience difficulties in ‘mindreading’ or understanding the thoughts, beliefs or feelings of others, particularly the impact that their actions may have on others. She said they get it on an intellectual level but not emotional. Children with PDA also often find it difficult to predict what may happen or how people may react in different situations and this often leads to anxiety and reluctance to comply with any requests because if you can’t imagine how it will look, it’s easier to say no.

Sensory difficulties seen in children with PDA
Judy’s research observed that children with PDA do have sensory processing difficulties and one area where they appear to experience particular difficulties is interoception which is a new area of research and is the ability to process internal feelings like hunger, needing to use the toilet and anxiety and can impact on recognising these feelings. They know they have an uncomfortable feeling but don’t know what it means. 

Meltdowns
Judy’s research observed that many parents report meltdowns of epic proportions and that children are referred to as ‘Jekyll and Hyde’ characters. Some children become aggressive or extremely verbally abusive and many will have no memory of events after they have calmed. Judy said that they are best viewed as an extreme fight or flight response when the person becomes overwhelmed and said more research can be done in this area but it’s a growing area of understanding that what seems to be the case with PDA is the fight, flight or freeze threshold is lower so they are more likely to flip into one of these states. She also advised that only the primitive part of the brain is functioning during fight, flight or freeze so the person is unreachable. Memories cannot be made and you can’t have rational conversation.

To conclude, Judy said of all of the children with PDA she observed, their experience is  different to children with ASD but the same as each other and said that’s the message we need to get across to clinicians… it is a thing.

She reported that her research has also included collecting data on the 200 assessed children (of which about 50% were diagnosed with PDA) including ADOS scores, cognitive profile scores, sensory profiles and communication profiles and plans to start work on formally analysing this with the help of Liz O’Nions and Prof Francesca Happe from UCL in the near future. This is to build a picture of what the cognitive, sensory and communication profiles look like in PDA and give other clinicians a framework of what PDA looks like in assessment with the ADOS scores. Judy noted that her own early analysis of the cognitive data has broadly seen problems with good working memory (holding instructions in your head) and visual motor integration (getting thoughts down onto paper) in children with PDA and she re-iterated the importance of fully understanding the profile and getting the picture of what PDA looks like out to the wider public.

The impact of exclusion on students with PDA
Lorraine Dormand and Jilly Davis, Robert Odgen School
&

PDA in secure environments
Lynsdie Barker and Jody Buxton, Tees, Esk and Wear Valleys NHS Foundation Trust

These talks happened at the same time as Julia Daunt’s talk so I couldn’t attend them but the PDA Society tweeted a few key points from both which you can read here.

Questions

There was time at the end of the conference for a few questions and in answer to a parent’s question about when to tell their child about their diagnosis of PDA, Phil Christie answered: It’s better to share as soon as you can and create a forum of discussion with them about the child’s strengths, their weaknesses, their needs, their likes and use the terminology that PDA is a form of autism and that this form of autism means that you find this difficult but that you’re really good at this

My thoughts 

I cannot put into words how positive it was to hear our life and what life is like for Little Miss M be describe so accurately by people who ‘get it’ and the clarity it gave me on so many things we have recently started seeing and feeling ourselves. It was such a privilege to hear from the mix of experts who helped to shed more light on making sense of Little Miss M and I’m so grateful to them and others for their continued work around learning and sharing everything they can about PDA so we can continue to understand it better and raise awareness ‘until everyone understands’.

And I just wanted to give a quick mention to the other parents who I sat with and chatted to including Jodie from Autism with lots of love and affection. It was wonderful to meet you all and share experiences. We’re all at different stages with our children but the sense of resonance and understanding I felt between us was incredible and empowering.

 


Phil Christie and Ruth Fidler offer a range of services including training, individual assessments, consultancy, school improvement & quality assurance and curriculum & assessment through Autism Associates.

If you are reading this before Thursday 16th November 2017, you may be interested in the Understanding and supporting children with PDA course for professionals working in education settings run by Autism Associates. The course in in Nottingham and for details contact jm.gray5954@gmail.com

Phil and Ruth are also doing a free Education support and strategies for children with PDA: a collaborative approach to learning webinar with The PDA Society on 21st November 2017. You can register here before the event date or listen to a play-back here afterwards.


Dr Judy Eaton offers Autism and PDA assessments for adults and children as well as Autism and PDA training for parents and schools at Help for psychology in Norwich. She also writes a blog on the subject.

Judy is also doing a free Introduction to PDA in children webinar with Operation Diversity on 7th November 2017. You can register before the event date here.


If you are reading this before 23rd November 2017, you may be interested in The National Autistic Society’s PDA: strategies for school staff training day delivered by Jilly Davis, a teacher at the Robert Odgen School (where Asher attends). The course is in Manchester and more details are on their website.


The PDA Society lists a range of PDA training courses and conferences on their website. They also have a variety of excellent free webinars with experts in the field which you can listen to here

The 2018 PDA Society Conference for parents, carers and individuals with PDA will be in Birmingham on 18th April 2018. Keep an eye on their Facebook page for details and how to book.


Julia Daunt has a Blog and Facebook page you can follow.


 

A note on overload and burnout

Life is such a rollercoaster with PDA. Little Miss M can tolerate and cope with life in one moment but cannot in another, going from one extreme to another (and sometimes back again) in the same day. Sometimes we go for days with relative stability, finding a balance that works, before something happens which overloads her and stops her from coping, while other times she remains intolerant to life’s demands for an extended period of time, living on edge and finding everything difficult. There are also times when she just seems to burnout and isn’t able to tolerate what she usually can and life becomes incredibly difficult for her.

Our PDA-friendly lifestyle allows Little Miss M to have a lot of downtime, drastically reduced demands and autonomy where possible and we use lots of distraction strategies to help her cope with necessary demands and the things she want to do. This has a positive impact on her quality of life and wellbeing but it does not eliminate all of her difficulties and anxiety. There are still times when she doesn’t feel in control, moments of uncertainty, difficulties with social interactions and her emotions and other difficulties and confusions associated with ASD which all overload her brain and cause anxiety.

Her anxiety levels fluctuate all the time, depending on how many of these scenarios she encounters and how often (which affect her tolerance of demands and behaviour day-to-day) and over time the overload and anxiety accumulate and take their toll on her. Every so often this results in her experiencing periods of burnout where her brain is exhausted and unable to function as it usually does and all of her ASD and PDA difficulties are heightened and become even more difficult than usual as her ability to cope with life drastically reduces.

It will look different for everyone but here are some key features for Little Miss M during burnout:

Demand perception and avoidance are heightened as is anxiety and she’s more likely to explode with anger and frustration very quickly when she feels a loss of control.

She worries about everything and is nervous and on edge for a prolonged amount of time which really plagues her, making each day stressful and scary for her. She needs a lot of reassurance and comfort but it doesn’t really do much to settle her in the moment.

She really struggles to speak and put some sentences together and stammers and repeats words. I think this is the reason she reduces the number of full sentences she uses when asking for things and will instead use one or two word commands. She also has a hard time processing what people say and often doesn’t answer or respond or takes extra long to do so.

Her sleep is rather restless during this time and she becomes even more demanding of us and needs our full attention all the time.

When burnout happens, she needs time to recover and extra support. We’re sympathetic to her worries and fears, no matter how often she repeats them and do as much as possible on her terms in order to give her brain as much rest from additional overload as possible. Her mood can be low as she reflects on her difficulties so we do lots of things to boost her mood and increase her confidence and self-esteem by making her feel valued and loved just as she is. Once her brain is well rested it begins functioning as usual again and her ability to cope returns and her tolerance levels increase.

It’s no wonder burnout occurs from time to time, her brain is frequently overloaded due to perceiving so many everyday things as a threat of danger and her constant need for absolute control and certainty of her environment and those in it is mentally exhausting. Also, while she’s still young and figuring stuff out, emotional dysregulation frequently overloads her too. We hope in time that emotional maturity and understanding will make a big difference but in the meantime, we want to do all we can to help reduce burnout now by reducing overload and the effects of overload and hopefully encourage good habits which will continue to help her in the future as well.

So how are we doing this?

We reassessed our lifestyle and looked at all the things which contribute to overload.  

Her lifestyle is already geared towards supporting her autonomy and individual needs which we’ve talked about in A note on education, A note on demand avoidance and A note on the need for control and certainty but after some reflection a couple of months ago, we identified some areas where we could make some more adjustments in that respect as well as to reduce the amount her brain has to process at any one time so overload won’t accumulate as quickly.

For us this includes:

Re-looking at the demands which are still present in her daily life and reassessing if any more can be cut out or approached differently and thinking about how to make necessary demands even easier so they have less of an impact on her. This also includes thinking even more carefully about the things we say and trying to cut out language which can put pressure on her.

One demand which has always caused a great deal of anxiety is going to sleep. She has always been her most demand avoidant at bedtime and we’ve been very flexible around this while still trying to steer her towards going to sleep at a ‘reasonable time’. After much deliberation we decided to relax even further on this and let her decide when she goes to bed which could be as late as midnight and falling asleep at 1am. This has removed A LOT of anxiety and overload for her and made bedtime a happier time. Consequently she sleeps later in the morning to get enough sleep and unless we have to be somewhere at a particular time, we leave her to wake up naturally. This one adjustment has had such a positive impact and we’ve since discovered Delayed Sleep Phase Syndrome which we suspect may be a factor as well as demand avoidance.

Addressing how we can help social interactions to become less anxiety inducing for her (see A note on social difficulties).

Having an assessment of her sensory profile to find out if anything sensory is leading to overload and so a sensory diet can be introduced to help. This is something we’re still looking into arranging.

Being more mindful about how much information we give her so her brain isn’t overloaded with unnecessary info which she can’t process. This includes choosing the right time (when she’s not already processing something else or stressed) to talk to her about something or ask her a question so she has a clear mind to process the information, keeping it simple and giving her time to process what we say without pressure to respond straight away.

She’s said that she becomes most stressed when we’re in a hurry so we’re making sure we take our time with everything and don’t hurry her (unless absolutely necessary). We thought we were already doing this but on reflection we found there were still times when we needed to rush or we’d ask her to hurry so we’re much more mindful of this when we plan (allowing even more time to leave the house for example) and when she takes a long time to do something (not asking her to do something faster and allowing it to run it’s natural course and take as long as it takes). There are of course times when she does have to go a bit faster for safety or when time has run out for example but we’re very careful with the language we use in these instances to minimise the pressure she feels.

We’re encouraging lots of things which relax her brain and give it the respite it needs as often as possible. [This can be difficult due to demand avoidance of things we suggest but we plant seeds and place things within sight and do them ourselves and then she can choose to do them if she wants to].

For us this includes:

Encouraging repetition which is incredibly calming for the brain because it knows exactly what to expect next so can relax. She naturally loves repetition of things which she likes so this is an easy one but we value how good it is for her and encourage it when we see she needs some respite and downtime. Examples include re-watching a favourite episode of a TV show or YouTube video, re-reading a favourite book, role-playing the same familiar scenario again and again, listening to a favourite song over and over – anything familiar which remains constant so her brain doesn’t have to wonder what is coming next and can relax.

We’ve learnt how relaxing proprioceptive input is for the brain through this video. Little Miss M loves to move, even when she is sitting so we are encouraging this more. We bought her a rocking chair so she can be soothed by the rocking motion whenever she likes and she enjoys going to our local park to swing and bounce on the bouncy sea-saw for more physical movement (this is often in her pyjamas because the demand to get dressed to go out is too much and doing so would defeat the object of going there).

Anticipation anxiety and worries about uncertainties cause a lot of stress and overload so we’ve introduced this concept from GoZen where she can imagine her own still and quiet place whenever she is worried or thinking a lot about things outside of her control. She really engages with videos on YouTube and this one captured her attention because she loves to draw and use her imagination. This has been particularly good to use at bedtime when many worries can come out, even just wishing it was morning already.
[She has made the concept her own by the way and creates a new ‘place’ each time we use this.]

Drawing and colouring really calms her so we have a variety of colouring pages and drawing paper in easy reach along with an endless supply of her favourite pens and encourage it when we can see she needs some respite.
[It’s taken trial and error to get to this stage – colouring books initially caused a great deal of stress when the colours showed through to the page behind so we photocopy the pages for her to colour now and she feared the pens running out so we have multiple packs stored away to replace them when this happens. We also keep all of her work in folders as throwing it away would upset her too much. Once we figured these factors out, colouring and drawing became a great source of relaxation for her.] 

How’s it going?

It’s been a couple of months now since we started addressing this and Little Miss M has fully recovered from the burnout which prompted us to and we’ve seen a definite reduction in how frequently she is overloaded. Life still throws scenarios at her which cause overload but by eliminating the ones we can with these lifestyle changes and helping her recover from the times she is overloaded, she’s literally in a better state of mind and is gradually becoming able to ‘do’ more in terms of days out and activities with her friends.

Burnout may be something she’ll continue to experience throughout her life due to the complex way her brain works but we hope these adjustments will help reduce the frequency with which it happens (if not prevent it at all) and we’ll continue to monitor and adjust our lifestyle and her support as needed so she has the very best opportunity to thrive.