What is Pathological Demand Avoidance (PDA)?

‘Autism Spectrum Condition’ (ASC, previously ASD (disorder)) is an umbrella term in the UK gathering within it other particular autism profiles, or presentations of autism with their own nuances and quirks. Pathological Demand Avoidance is one of these profiles. I’ve been reading up about it, and about other’s experience of it because although I’m well aware every single child is unique there is something about this particular profile that resonates. It makes sense of some of the dynamics we see at home.

‘PDA is now widely understood to be part of the autism spectrum. Children who present with this particular diagnostic profile are driven to avoid everyday demands and expectations to an extreme extent. This is rooted in an anxiety-based need to be in control. Aspects of the profile may be variable at different times and in different places.’ PDA Society

It is not yet used as a diagnostic profile in every part of the country, it depends on the NHS district you fall into. So over the last few years I have been keen to find out what I can about it because I have found it’s the most insightful and helpful profile for us to gain better understanding of behaviours we see, and to learn strategies that support. As well as the social and communication differences, and the sensory differences common to autism spectrum conditions PDA’s particular characteristics are:

The distinctive features of a demand avoidant profile include:

‘Individuals with PDA can be controlling and dominating, especially when they feel anxious and are not in control of their environment. They can also be very affectionate, charming, sociable and chatty, when they are calm and feel safe.’ PDA Society, about PDA 

I see many unique strengths…

  • fascinated by people, and quite passionate about getting to know what makes them tick.
  • observant and detailed
  • thinking outside the box and problem solving (seen in the many amazing strategies used to avoid demands!)
  • creative
  • feels deeply
  • desire to get things right

I also see such extreme anxiety about almost every aspect of living life in a world that seems confusing and relentlessly, overwhelmingly demanding. I see a need for  understanding, and loving support.

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Snowdrop moments: unexpected breakthroughs

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Love, love, love snowdrops don’t you. Little nuggets of resilience and pioneering spirit. Humble simple beauty when it’s least expected and looked for, when everything is cold & hard, and just when it’s needed to lift the spirits and urge us forward. I carefully divided and replanted some clumps of bulbs last autumn, and am enjoying watching them fight their way into flower in their new homes around the garden. For me they are a reminder of the fact that God is in the business of making everything new – and that begins now, in the unexpected; against the odds; tenacious; fragile and simple yet miraculously powerful breakthroughs that God allows to spring up ready to be found and rejoiced in. They remind me to rejoice with God in the small significant ‘newnesses’ that happen in our family life.

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A sewing birthday party attended despite huge anxiety and thoroughly enjoyed. Huge sense of achievement. The photo shows fluffy the bear, designed and sewed by T alongside a great group of girls from her class.

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T had homework this week to cook a healthy tea for her family!

Andrew helped, I provided emotional support! And T cooked chicken pasta. Exhausting.

Hidden in this amazing event was an equally amazing moment as T sat with B & A and a friend at the kitchen table and all ate some – a new recipe tried by everyone – don’t try & tell me God doesn’t break into our everyday, that’s definitely miraculous.

 

This morning A allowed T to sit in his room, and they peacefully ate breakfast alongside each other. (I know!!!)

College work, a very new way of presenting and handing in, is being completed.

We have had a visit from a good friend, who helps us in ways she probably doesn’t realize. And, in the same few days another friend came round so that Andrew & I could go out for a meal. I know, sounds so ordinary yet never ever taken for granted.

img_20190122_102331_045I am pressing on with the editing of another book – the one that sparked all the others – about time I focused on it again and got it ready to share with you, think you’re going to love it.

Last week I also travelled (not far, but even so, out of my little comfort zone) to help deliver a disability (or diffability as I like to think of it) awareness training session for the diocese and had the chance to share a bit about ‘sense of space’, our accessible worship at church and our experience. And we juggled school pick ups successfully between us.

All of these small, significant, moments – snowdrop moments if you like – can be moments to recognize God is at work in our midst. He is drawing us forward, revealing his faithfulness, his humour, his joy in who he has created each of us to be; leading us into his life – his overflowing, never ending aliveness that he pours into our lives. Tough circumstances, worries, lack of sleep, diffability; none of it stops God in his busyness of recreating. His aliveness is powerful enough to break through the hardest, coldest places of our lives in ways unexpected; against the odds; tenacious; fragile yet powerful.

 

 

How can it be nearly December?? what happened in November

I’m not sure what happened to November this year!

It’s been fast and furious in our family this year. After the settling down into new patterns of school and college at the beginning of term, November has seen homework and assessments… and the planning and organizing of work experience placements which is daunting. This term A has been involved in the school musical again, ‘Legally Blonde’ so he’s been busy with rehearsals and this week with the shows. We went to see it together, really fun. (Came away with plenty to unravel and talk about with T afterwards though, maybe more of that in another blog.)

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Little Jaffsie enjoying a secret hideout in the garden

The kittens have reached the age to begin exploring the garden – though I am nervous, and closely supervise still. My worries not at all calmed by Jaffa discovering how to get up on the garage roof already. Padfoot is still being kept inside, his health has not been good since we’ve had him and there are ongoing investigations and tests with the vets. So for now it’s easier to monitor him in the house. It’s easy to make sure he gets tonnes of cuddles and fuss – he just laps it up. They are becoming a wonderful part of family life, Padfoot particularly seems to sense when to curl up near someone who needs calming, and Jaffa is a bundle of energy and curiosity which is a great motivator.

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helping with bathtime

All the usual stuff of course is still being shoehorned into each week – although sadly the washing Himalayas is actually a mountain range of epic proportions as I write despite my best efforts! And no matter how often I hoover, it always needs doing. And best not to even comment on the lack of tidiness – it’s overrated I reckon.

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Padfoot (aka paddington!) investigating our latest creation – a gingerbread house

We have had some together time of Friday evening – one week even a film we all watched together (quite often we divide into two groups for Friday chillin out) – and we made our kittens a gingerbread house at the same time, partly inspired by the film choice: ‘Charlie and the Chocolate Factory’. Little projects to occupy while we wait for the start help such a lot, and I’m on high alert all the time I find it near impossible these days to relax with a film so it kept me busy too! We’ve also ‘enjoyed’ some Friday family times shaped by meltdowns and struggle – so it’s good for me to sit and remember a good one.

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It’s been difficult to say goodbye to one of our lovely loyal guinea pigs this month. Custard Cream died very unexpectedly. And we miss him. We have planted a beautiful Hebe where he is buried. And the other half of the duo – Bourbon Biscuit – has been brought inside for the winter and is getting a lot of looking after from T. The two hamsters are fine – rather cheeky around the kittens, always popping out to stare at them, and trying to have a little nip if the kittens get too close. And the chickens, bless them, have been malting so look a bit scruffy and sorry for themselves but are fine.

Church life is gearing up for Christmas on top of all the usual busyness – I have yet to begin everything that needs doing for family Christmas of course, but somehow it seems to always come together in time (and what doesn’t, doesn’t matter). And schools have a lot of extras, Christmas Fairs, services, concerts, mufti days, discos… most weeks I struggle to keep up with what’s happening when and for whom!! I’ve also finally got round to filling in yet more forms to apply for carers allowance with the encouragement of a good friend. These things take such a lot of energy! Really thankful Andrew is a detail person, November has been a month and a half!

 

 

selective (not selected) mutism

It’s a very unhelpful name, selective mutism I think. If we were in the middle of a game of word association it might be followed by ‘choice’, ‘choose’, ‘select’. I can understand how it can so easily be misunderstood as ‘shyness’, ‘manipulative’, ‘oppositional behaviour’, ‘stubbornness’. We hear the phrase and immediately jump to the misunderstanding that the child is selecting when to speak and when not to. It’s more accurate to understand it as the mutism is selective, not the child. It gets it’s name from the way that the mutism is only seen in certain contexts and not in others not because it is implying choice.

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The most helpful way I’ve found of thinking of selective mutism is to focus on the physiological. It is known that in moments of extreme anxiety or panic the body’s fight/flight/freeze mode affects us physically. Our body’s hormone balances for example are completely upturned, in order to get ready to run or fight. One of the physical affects can be the seizing up of the muscles needed for speech – including the vocal chords. So in that situation of panic speech is simply not physically possible. And that is selective mutism. An outworking of extreme anxiety. For some this anxiety is seen in group contexts (even of familiar people); for others with strangers; for others it is in particular places; for some when under the pressure of a direct question; or simply in front of others. It stems from social anxiety, social phobia and anxiety about demands. Responding to selective mutism as if it is ‘stubbornness’ or ‘manipulative behaviour’, or ‘a shy phase’ ignores and adds to the anxiety.

Selective mutism can affect autistics as well as others. And it can make life very challenging, and scary – imagine needing something and being completely unable to ask for help and get support. It makes being in new situations and places especially difficult when you know you cannot stop and ask for directions or check something with the teacher or your classmates. It can make learning hard work when you are unable to ask for help or clarification. It can make friendships and social times, like lunch breaks, really challenging.

There is really helpful advice and explanations at SMIRA.

I especially like way the article ends:

 Celebrate your child’s unique qualities
We cannot change the personality of SM children – and wouldn’t want to! They are naturally sensitive individuals who take life seriously and set themselves impossibly high standards. The downside is a tendency to be overwhelmed by novelty, change and criticism; the upside is an empathetic, loyal and conscientious nature.

How to support?

  • be kind – patience not pressure
  • surprises add to anxiety
  • give more time than you think for an answer
  • praise achievements
  • disappointment and disapproval are definitely not wanted
  • support the anxiety
  • help find safe ways and places to calm and regulate
  • enable coping strategies for anxiety
  • remember it is selective but not selected

It is not easy to truly understand or appreciate another person’s experience of anxiety – we all get worried about things from time to time, and it’s all to easy to assume other’s worries feel and affect them the same way that ours affect us. Our expectations are too often shaped by our own experiences. But to be able to support we need to put those expectations to one side and take on board the extreme level of anxiety being experienced by someone with selective mutism. It is not a choice. It will not be easily and quickly ‘got over’ or ‘snapped out of’. It is quite paralyzing. And can be so very isolating.

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Role models

Growing up in a Christian home, a manse with many people coming and going, a faith filled extended family, and being at the heart of church family life meant I had many followers of Jesus as role models. I can sit here and think of a number of really significant people whose life of faith has encouraged, strengthened and challenged mine as I grew (and continue growing!). From Sunday school teachers and youth house-group hosts to honorary church grannies who listened and shared life with us, from Bible college tutors and fellow ordinands to Mums like me living out their faith I have been shaped and inspired by other Christians.

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It was Paul who said rather challengingly:

Follow my example, just as I follow the example of Christ. (1 Cor 11:1)

It wasn’t just people alongside me either. As a child I loved reading biographies (still do given half a chance!) of Christians doing extraordinary things with God. Books like ‘Through gates of Splendour’, the story of the Elizabeth Elliot; the writings of Corrie Ten Boom; or the story of Mary Jones walking to find a Bible shaped me and inspired me – they still do.

One of the youth sessions at the New Wine summer conference that A came away talking about was an evening when a woman from North Korea came to give some of her testimony. She had become a Christian, had escaped, found a Bible and written it out in its entirety committing much of it to memory. Later whilst in Prison for her faith and escape, she had shared her faith despite the dangers and had started a church that met in the prison toilets which was so very dirty that guards never went near, and they prayed and recited scripture in whispers. She spoke of the reality of living as a secret Christian, of people burying Bibles to keep them hidden and going at night to dig them up read them, of the danger of being known as a Christian and yet how faith is being shared. For A it was I think one of those encounters that will shape him. We have certainly all come back less complacent about how easy it is for us to reach for a Bible and to read God’s words to us.

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Hearing testimonies like this from Christians whose experience is so different from ours is so challenging, and so needed in our growth in faith and belonging in the church. These are the testimonies that have made me courageous (terrified yet stepping out with God) in my life of faith.

“As parents we are the main spiritual influence in our children’s lives. And as we discover more abut what it means to ‘abide in him’, we have an amazing opportunity on the roller-coaster ride of family life to model to them what seeking to live in a real relationship with God actually looks like.” (p47, ‘Raising Faith’ Katharine Hill & Andy Frost)

It is a daunting thought that I am a role model of a life of faith in my children’s life. I certainly don’t want my life to be the only one they look at to see what a life of faith looks like. I want to enable them to encounter many others too who will inspire them and show them in different ways, and through different experiences what following after God can be like. Being regularly part of church family is great, and opening the doors of our home to others as often as we can is good too. RE projects (Gladys Aylward is now very well known to B & I), talks, films, you tube, family and books (10 girls who changed the world, by Irene Howat is good – there’s a boys one too) – the opportunities for introducing our children and young people to other Christian role models are many and so very interesting and inspiring. Helping my three to hear other’s stories of faith feeds me too.