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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Let me take the mask off

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Masking – the art of camouflage that many (most female) autists spend a lifetime perfecting; the skilled, intentional blending into social surroundings, to become just like those around in order to become invisible & not looked at.

Both my girls are experts at masking. It’s a coping strategy they use in a number of social contexts, including school. But not at home, when it’s just us the masks come off and my girls can rest awhile (once all the pent up emotion, strain, and anxiety has exploded of course).

…”most of our participants are experts in pretending not to have autism — a phenomenon sometimes called ‘camouflaging.’ They said they wear a ‘mask’ or adopt a persona that is carefully constructed from copying the behavior of popular peers or fictional characters, or by studying psychology books.” (William Mandy & Robyn Steward)

The art of masking is pretty amazing really, and my girls achieve so much, and push themselves through so much because they do it so well. Both are fascinated by people, (as well as being bemused and overwhelmed, and anxious about them), and do a lot of people watching and deciphering. Both want to fit in and to build friendships among their peers. Neither like to feel singled out or looked at. Camouflage uses the skills of mimicry and echolalia, planning ahead and practicing phrases and gestures, and facial expressions – often in front of the mirror. It also involves concentrating on surpressing gestures and behaviours that have been noted to stand out or be unacceptable or misunderstood, like stimming for example.

“Most … said they found the effort of passing as neurotypical to be exhausting and disorienting, and many thought it contributed to their delayed diagnosis. There are no tests for camouflaging, and this is a major barrier to clinicians and researchers understanding and helping women on the spectrum.” (William Mandy & Robyn Steward)

As well as surpressing behaviours there is also an element of compensation going on in masking autism too. Learning ways of managing to maintain eye contact for example despite the pain it causes. Or finding out facts about a peer groups interests and role playing being into it too. It all takes constant effort.

“Being both autistic and an autism researcher can be a bit of a juggling act: it feels like wearing 2 very different hats sometimes,” Belcher told Neurology Advisor.

“The most important thing I’d like to convey is that ASD is not just a collection of impairments; it includes lots of strengths and abilities as well, which need to also be taken into account,” she said. At the same time, Belcher drew attention to the dangers of studying ASD as a “disease” and incorrectly regarding the spectrum as moving from “mild” to “severe.”

“A very high functioning woman, for example, who has learnt to camouflage her autism, may be rated by professionals as having very mild autism, when in fact she suffers a great deal with mental health problems as a result of constantly trying to appear ‘normal,’ ” Belcher told said. “There’s a lot more people with autism than we know of, and a lot of those people will be having a very difficult time. Professionals need to be more sensitive in their diagnosis of autism, and move away from these very black and white tick boxes of what autism is.” (Hannah Belcher)

Add into the mix the ongoing sensory demands of the day, and the fact that practiced phrases and gestures cannot guarantee the outcome you have seen happen before – because people don’t behave in a text book kind of way – and the picture is one that so easily becomes frustrating, overwhelming, confusing and exhausting. Masking is so very amazing, so very useful but it comes at a huge cost. In the general population it is estimated that 1 in 4 of us have significant mental health problems at some point, within the autistic community it is estimated at 80%. Anxiety disorders, depression, suicidal thoughts are not intrinsic to autism itself yet are so often present, in part as a cost of trying to blend into a world made for a different way of thinking and behaving. They are a cost of trying to live in a world which seems far less accepting of difference than it declares itself to be. They are also a cost of being perceived as not needing support or accommodations in contexts where autism is being masked.

Despite not wanting to stand out, there is a basic need to be ‘seen’ and understood, to be accepted and loved for our true selves. There is a need for safe people and places where the mask can be put down.

 

 

 

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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Custard cream

Since our half term has been dominated by a sickness bug, and the worries and stress that brings with it in our family life I’ve decided it’s about time I introduced you to our gorgeous guinea pigs, custard cream and bourbon. (A far nicer thing to write about than the amount we spent on anti-bac cleaners, or just how little sleep I had while T was ill, or just how debilitating the worry of it spreading was for all of us – each expressing it in our own unique ways!)

We chose them and brought them home not long after we moved here. B named & looks after Custard, and A & T have Bourbon. They have a ‘summer residence’ in the garden, and an indoor hutch. To be honest though, we are all so used to them being inside with us none of us are rushing to get the summer home cost & ready this year! And we have a run they go outside in whenever the weather is good.

They both quite quickly got used to cuddles, though we still keep a close eye on cuddles with T, she holds them very close!! Bourbon is the quiet one, preferring a quiet calm knee but Custard on the other hand is always ready for a challenge, an explore our a new adventure. He was first to learn going up the stairs, and pretty much gallops up with delight when he gets a chance, waiting at the top for B to catch up. He loves going exploring in the garden on his lead, and seems happy to pose for photos. Bourbon loves to chatter & chunter once everything in still and settled. He will follow Custard’s lead to learn new things, but really he loves what’s familiar and is very content. Custard finds baths exhilarating, Bourbon is glad when they are over! (Yes books about keeping guinea pigs recommend giving them baths… once read, must be obeyed!)

It’s good for us to have them with us, a part of family life. They bring fixed points in our daily and weekly routine, and love how they bring out the gentle, careful caring gifts in B, A & T. Holding them brings a stillness and calm which not much else can sometimes… easing us out of that awkward bit after a bad meltdown when what is needed is closeness and acceptance as well as space … drawing us out from shutdowns in a winsome and undemanding way. Being with them reduces stress… often visibly.

Now of course looking after them brings a few stresses too – going away and leaving them can prove very difficult for some of us, with worries about whether the (pages of) instructions have been written clearly enough, or if they will be read, or followed… they come with mess… especially as they often follow B around the house (or is it the other way around??) leaving me a little trail to follow! And my worst bit, they need their claws cutting regularly which does leave me just a little stressed wanting to get it right, not hurt them, and needing help from my wonderful assistants to be able to get it done!

But we wouldn’t be without them!

Welcome

So, right from the start of this new adventure I want you to know that I’m not writing posts because I am brilliant at sharing, modelling and nurturing faith with my three lovely children – some days feel like a disaster, many times I try & fail with style. A good friend encouraged me by saying I might have a ‘ministry of imperfection’. I certainly know I don’t get it all right (whatever that looks like!), and I am happy to be honest about that in the hope that it opens up conversations which might encourage and inspire.

The truth is I am passionate about my children growing in faith – it comes up there alongside my hopes that they will be healthy, secure, loved, and find purpose and fulfillment. In fact I’m not sure I can separate it out from those hopes. Jesus is the only one who brings life in all its fullness, and that is my prayer for them.

I came so they can have real and eternal life, more and better life than they ever dreamed of. (John 10:10, The Message)

But its the ‘how’ that’s an adventure and a half, a challenge with lots of frustrations, failures and also full
of precious moments of blessing and new insight – insights that nurture my faith too. It’s an adventure with sometimes unexpected encouragements – always good to remember on the painful ‘nothing is going right’ (OK, more honestly – ‘I’m a failure as a Christian mother’) days – like the wonderful one I wanted to show you that we found hidden among the messages in Andrew’s Fathers Day present this year!

Let me introduce my family a bit, I am married to Andrew, a vicar, and we have three children, a boy & two girls. Our oldest girl has Aspergers (some say ASD, some Autism, some high functioning autism) and we are in the process of assessment with our youngest girl too; their way of seeing and understanding things, and the way they experience the world around them shapes our family life quite a bit!

In September they will all be full time at school, two in secondary, one starting infants – so I am told I might get a tiny little bit more time & space for the other things I fill life with. I am ordained too, and minister alongside Andrew on a flexible voluntary basis, so far since we moved here my ministry has involved children’s groups, work with families, work in infant & secondary schools, leading & preaching (esp love all age) and writing. I love gardening, crafting, baking researching family trees, and do them whenever I get a chance – oh and of course somehow or other all the jobs that go hand in hand with being ‘full time mum’ get thrown into the mix too (and some of them – dusting?? – get ignored!).

I am excited about sharing the ups and downs of this adventure I have been on for nearly 14 years now – and I am looking forward to the conversations we will have about sharing faith with our children.

“Daddy, I love you so much because – along with mummy – have helped me to learn more about God.”