Thursday, 21 June 2018

Ten things you need to know about Pathological Demand Avoidance

Our younger daughter, Sasha, is autistic. She was diagnosed with ASD (Autism Spectrum Disorder) at the age of two and a half, over eight years ago. 
Sasha as toddler ten things Pathological Demand Avoidance

This blog began the day autism was suggested to us by a paediatrician. Around a year later we stumbled across the description of Pathological Demand Avoidance on the internet and went on to read the book Understanding Pathological Demand Avoidance syndrome in children. We finally felt like we could begin to understand and help our little girl. Now I want to share those insights with others.

1. Pathological Demand Avoidance (PDA) is a profile of autism


PDA is a type of autism spectrum disorder (also called autism spectrum condition; both are now often shortened to be called simply autism). The other two known profiles are Asperger Syndrome and classic autism (Kanner's).

In the 1980s, Elizabeth Newson, an international expert in autism, first recognised a group of children who were similar to other autistic children but with some common differences. In 2003, an article titled 'Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorderswas published in the British Medical Journal.

Pervasive Developmental Disorder (PDD) was the over-riding term previously used in medical manuals for all autism spectrum disorders. Atypical autism or PDD-NOS (with the NOS standing for Not Otherwise Specified) are diagnoses used previously in the UK and still commonly used in the USA. I suspect that when PDA becomes more widely understood over there, many more parents will find this category a better 'fit' for their children.

2. PDA can overlap with other autism profiles


Every autistic individual is unique and has different characteristics. So it stands to reason that there will be cross overs and situations where a clear cut diagnosis is not possible or even beneficial.

There are several other co-morbid conditions which are often found in those diagnosed with autism; those in the outer green circle in image below. Tourette's, OCD (obsessive compulsive disorder), SPD (sensory processing disorder), ADHD (attention deficit hyperactive disorder), Dyslexia and Dyspraxia can be identified in some, but not all, children with PDA. Those conditions are not autism spectrum disorder profiles; they can be present in individuals who do not have a diagnosis of autism. PDA is however, a type of autism.

Venn diagram showing types of autism and pathological demand avoidance




3. Individuals with PDA have extremely high anxiety levels


PDA is 'an anxiety driven need to be in control and avoid other people's demands and expectations'. The control helps them manage their anxiety so that they know what to expect and don't have to comply with demands which they find too difficult. 

'Can't help won't' is a phrase often associated with Pathological Demand Avoidance. In a nutshell, this explains that individuals with PDA can't help the fact that they won't do something - the reason they won't is because they can't; it's too difficult for them. Dr Ross Greene's philosophy is well worth further reading: 'kids do well if they can'. If they can't, it's because they are lacking in skills. Some of those skills are teachable over time, but the fact that some are missing is an inherent characteristic of the autism diagnosis. 

4. Both direct and indirect demands cause anxiety


Most people don't stop to assess how many demands we place on others, particularly children, during an average day.
'Wake up, get up, get dressed, brush your teeth, eat breakfast, comb your hair, put your shoes on, get in the car...' and many more all before 830am for those going on the school run. Then they continue during the school day; 'sit down, cross your legs, get your books out, raise your hand if you want to talk, be quiet, line up for assembly...' and so on. 

Those are the direct demands, which are obvious to see when thought about. Then there's the added stress of indirect demands. Peer pressure, wanting to fit in a group and being social but not knowing the rules, time pressures with bells ringing and transitions to new subjects or new classrooms needing to happen, sensory issues causing discomfort whether that be noise or smells or the feel of unusual fabric or hard chairs to sit on. The fear of the unknown, the dread of attention being focused on you, the knowledge that if you do well and are praised, then further, more difficult work is likely to follow. 

All of the above can raise the anxiety levels of an individual with PDA to a point where an overload, or meltdown, ensues.

5. Behaviour which challenges can be a panic attack


Challenging behaviour is a phrase used to describe actions which are difficult for the person they are directed at. This could include destructive behaviours, hurting others, kicking, hitting, running away and self-harm. Our girl mostly refuses rather than any of those actions; she curls up into a mushroom shape and is impossible to move. As she gets older, it also presents more often as screams and anger. Still all challenging, but not to the extent that some families have.

It's important to keep everyone safe in the moment, but to later look behind the behaviours to understand the cause and then assess what can be done to alter environments or conditions so the anxiety doesn't overspill. For more support with challenging behaviour, please visit The Challenging Behaviour Foundation and Yvonne Newbold's website

6. PDA is NOT the same as ODD, Attachment Disorder or Conduct Disorder


Pathological Demand Avoidance is a profile of autism. Oppositional Defiant Disorder (ODD), Attachment Disorder (AD) and Conduct Disorder (CD) are not types of autism. It is possible to have a diagnosis of PDA with ODD, AD or CD but it is also possible that PDA has not been recognised and diagnosed correctly in the first place. For more reading on all these conditions, please visit my blog post 'The difference between PDA and ODD'.

7. Typical parenting strategies are NOT generally successful with PDA


The reason why it is so important to understand and diagnose PDA correctly is that the best way to approach and support individuals with PDA is with very specific strategies. Strategies suggested for ODD, AD and CD (such as stricter boundaries and consequences) can actually increase anxiety levels and have not been found to be effective in the long term (or even short and middle term!).

Society conditions us to believe that there is only one way of parenting. The typical pattern is set with the adult being in charge, imposing conditions and rules on the child. In reality, our job should be to share our wisdom and experiences in order to help guide children through life. That doesn't mean that there are no boundaries for children with PDA; it just means that we have to work much harder to understand needs and enable our children to achieve their best in a society which is overwhelmingly neurotypical (or is it?!).

Believe me, if I could use typical parenting strategies for my younger daughter, I would. They have been pretty successful for our eldest girl and involve a lot less effort! Star charts, naughty step, rewards and consequences... we tried them first, of course, as I recommend everyone does. It's a fairly solid way of discovering whether you are living with a child with PDA.

8. Lots of people have demand avoidance; this is not PDA


Demand Avoidance is something which everyone can show, at the point when they don't want to do something. Toddlers who don't want to be told 'no' to more chocolate, teenagers who choose not to tidy their rooms, adults who put off doing important work or making appointments (ahem), children who don't want to do PE. They can show avoidance in a variety of ways; outright refusal, procrastinating, distracting, making excuses. 

This is not the same as Pathological Demand Avoidance, which is an autism spectrum condition characterised by extreme anxiety. This means that even simple, everyday activities, which a child may enjoy doing (such as going to the park, for example) become impossible to achieve because either the demand is phrased wrong, or comes at the wrong time, or is one of too many that day.

To give an indication of whether a child has Pathological Demand Avoidance, please look at the characteristics list on the PDA Society website. There's also the EDA-Q (extreme demand avoidance questionnaire) which can be used as a guide.

9. Using the right language is key


There are many strategies which can be suggested to help with PDA, and I've covered some of these in a previous blog post on strategies (there's one on strategies for schools too). They include (but are not limited to) planning ahead, being flexible, always having an exit plan, offering choice and building a trusting relationship.

One of the most important strategies is choosing the right way to communicate. Rephrasing so demands are not direct is vital - so instead of 'you need to...' or 'it's time for you to...', switch to 'perhaps we can...' or 'I wonder if it's possible...'. Humour works well; turning things into a game distracts and can make the task seem less urgent and necessary - 'I bet you can't do that before I've done ten star jumps' for example.

We have often joked that our daughter's favourite word is 'no' - but only if she is saying it. We rarely use it ourselves, as it would be the cause of much distress. That doesn't mean that there are no boundaries; what it means is that we say no in a different way to soften the blow. For example 'well, that sounds like a great idea, but we might have to wait until we've saved up enough money for that' or 'I'm sorry it's not possible now but we'll make sure we can do it next week when the weather is better'.

I can hear some scoffing at this, not understanding why it should be necessary. Shouldn't adults be setting the rules and just saying it how it is?! Believe me, if it was that easy, we'd be doing it - in fact we do, with our older daughter. With Pathological Demand Avoidance, it's just not that simple. Using the right language can be key to keeping those anxiety levels from flowing over though.

10. Children with PDA grow up to be adults with PDA


Just like the overriding autism diagnosis, Pathological Demand Avoidance is a lifelong condition. It won't simplygo away or be grown out of, but can be helped by others around using the correct strategies. It has been a huge comfort to us to hear from adults with PDA and to know that the future can be rosy. I suggest reading the blogs of Julia Daunt (Me, Myself and PDA) and Riko (Dragonriko) as they offer a real insight into what it is like to live with PDA.

I also urge you to watch this video where Isaac Russell talks about experiences with Pathological Demand Avoidance. It's eye-opening.

11.....

OK, I know I said ten... but I needed to add one more. Our daughter has PDA and she is amazing. She, and many others with PDA, deserve to be better understood. I believe that society can change, but only if we are educated to understand. Please share if you want to help!
girl with rainbow in garden ten things Pathological Demand Avoidance pinterest image




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Saturday, 16 June 2018

Siblings {June 2018}

After an enforced break from this blog, I'm coming back with a very quick Siblings post. May and June are always busy months at home for me, with both the girl's birthdays, and so the blog definitely has to take a back seat. There's so much going on I'd love to write about though! Another week or so and I'll be back with a bigger bang...

For now, here's this month's siblings photos. One above taken last night, when Sasha was still 10, and one below taken this morning, when she was 11! Yes, it's Sasha's birthday today, and she's having a party later, which is another reason why I can't hang around...

The photos were snapped in Sasha's bedroom, where the walls are all pink and the light is terrible, so I apologise for the rubbish quality. One of these days I will learn how to use my proper posh camera and have it next to me at all times... maybe.

Happy June everybody!




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Saturday, 2 June 2018

FestABLE - a Festival of Specialist Learning

Today, I should have been somewhere else; FestABLE, a huge festival which aims to enable young people with disabilities to achieve better outcomes in life. It's taking place in Cheltenham and is a day filled with learning and information sessions alongside inclusive activities. Instead, my view includes knitting and Minecraft - neither of which would be my choice of activity....*


Despite it being a Saturday in half-term, there are hundreds of parents there all keen to share and be pro-active. Some have taken their children with them, as this festival of specialist learning was designed to be as inclusive as possible with various activities and quiet places on offer. 

This is about the SEND world (Special Educational Needs and Disabilities); this is a community which I'd probably never have known about if it wasn't for our daughter who was diagnosed with autism over eight years ago. These people are my 'tribe', some I've met in real life, others just conversed with online, but I know I have something in common with all of them. It makes for easier conversations when you know others just 'get it'.

'Everything I do, I do it for you' (great to get a Bryan Adams line in here - I went to see him in concert again this week. Definitely the highlight of my half-term) is a phrase which applies to both my girls. It's sadly probably true to say though that a disproportionate amount of my time and brain power is taken up with trying to make the world a better place for my autistic girl. Following through on that thought though, I have to believe that if it's better for her, it's better for our whole family. I suspect the others at FestABLE today would agree.

This half-term has been a tricky one for a few reasons, some of which I alluded to in my previous post. Yesterday, I had a brilliant day out with our eldest daughter to try and re-balance that feeling of fairness and attention. We went to Thorpe Park, and thoroughly enjoyed ourselves. 

Of course there was reflection about how it was not a place for Sasha and a slight tinge of sadness about how it wouldn't ever be a family day out for us. No bitterness; I can appreciate that there are many families who for various reasons are unable to enjoy a day out there. 

Sometimes it can feel as if there's always a price to pay for enjoyment though. Sasha wasn't pleased to be left at home with her Dad, even though she didn't want to come and could (kind of) appreciate that this was a treat for her older sister. She was happy to see me when we returned around 8pm, but instantly insisted that I would be spending the whole of the next day with her. She specified that meant ten hours of my time with her alone, to make it fair.

Oh yes, that's right, she was talking about the day I was supposed to be spending at FestABLE, for her. But not with her, because for us it would be impossible to attend an event like that with Sasha. Unless alone at home, she is not able to be free and relaxed and to 'go with the flow' any more (if she ever was... somehow it seemed a little easier at times when she was younger). 

I almost titled this post 'the real reason why I'm not at FestABLE' but I've never been comfortable with 'intriguing' headlines. Last night I had to give my apologies for not being able to turn up today, and my reason was that I was feeling poorly after a possible dodgy burger at the theme park. This part is indeed true; our eldest was also up feeling unwell in the night, sigh. But at least half of my reason for not attending is, well, Sasha.

It's got me thinking today, as I've watched and interacted with the #FestABLE tweets on Twitter, that even though this is a group of people who I know are understanding, I still found it difficult to give that full explanation. I knew that if I attended, the resulting meltdown from Sasha would have been painful to be around, but I held back from sharing that with those I was hoping to meet. There's always a part of me that believes others will think I'm overreacting, or 'giving in' to her, when I choose what will keep her calm over what I'd really like to be doing for myself.

This is a huge part of life with Pathological Demand Avoidance. I've had to accept that it's all a balancing act, and I tell others that I've had to grow a thick skin and ignore any judgements. That doesn't mean I've stopped caring what others think though. Most can't understand what it's like, as parenting a child with PDA is so unbelievably different to so many other children. It sounds crazy to say that I couldn't go today; it's as if Sasha exerts some higher control over me. Well the truth is that she does, even though she doesn't realise it. I could have gone, but the aftermath would have been even more stressful than usual. I'm already wondering whether Sasha will be ready to return to school on Monday, after half-term is finished.

I've been called a 'worrier' before now, which hurts but I realise this is what many probably think of me. That's not my natural state of being though, I wasn't a person full of anxiety before I had children. Keeping the balance at home is not easy; I'd love to be out and about and making choices about what I do for me and what we do for them... but my options are limited. I've learnt to live with that, and I'd say most of the time I'm happy and optimistic about it. Right now I'm living with the suspicion that my time to get things done is limited; if Sasha's current educational provision doesn't work out then we don't exactly have any options there either. Every once in a while it gets too much. 

That's why an event such as FestABLE is one to talk and write about. There are families making an effort to change this world for the better, and they should be applauded. Not everyone is able, even when willing. There needs to be those who talk and spread the word, and those who can follow through with actions. I'm hoping there will be more of both over the next few days, once everyone has recovered from the festival experience! Please do take a moment to visit the FestABLE website and see all that was on offer and being discussed. The more we share, the more 'mainstream' this talk becomes.


* Knitting is something I've not done for years; Sasha recently picked up a ball of supersoft wool in Hobbycraft and has insisted that I make something cuddly for her. Other than the fact that I have a million other things to do, I feel she's being a bit hopeful about my craft skills!


Spectrum Sunday
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