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Posts Tagged ‘Pathological Demand Avoidance’

This is quite extraordinary…

Michael has never managed to stay in a paid, after school, group activity for 3 months EVER but for the first time, this year he has persevered, achieved rewards for his efforts and has today been awarded the Tenki Ryu Ju Jitsu red belt! He has religiously been to Ju Jitsu 3 times a week, for 2 hours each time and much to our astonishment, shows no signs of giving up.

When I arrived this evening to pick him up, he proudly walked up to me and showed me his red belt. I had to fight back my tears!  I put on a brave face and went to Sensei for a debrief, who told me Michael had thoroughly deserved his belt, that he had shown maturity,  respect and an understanding for the principles of Ju Jitsu to achieve the grade. She said that in the recent months he had been kind to others, he had been dedicated and that he had taken criticism on the chin when he had been out of line!

Ju Jitsu is a martial art of self-defence, consisting of a range of movements including striking, counters, deflecting strikes, throws, injury points and grappling  We have been cautious and at times rather anxious about introducing Michael into the martial arts world but after nearly 4 months, Ju Jitsu has helped develop Michael’s self confidence, his fitness and his awareness of the impact he has on others.

To achieve his red belt, Michael has had to earn 4 grades (red tags), each of which has taken him nearly a month.  As well as having to follow a strict set of guidelines in the classes, he has also had to present a weekly report card of objectives he has had to set to work on at home and at school, both of which are then respectively graded to be discussed at the end of each week in Ju Jitsu.

I confessed to Michael on the way home that I was so proud of him, I nearly cried. He replied by saying that when he was presented with the belt, he nearly cried too!!

This is a magical moment, which makes me feel very emotional even as I write this blog.

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Here is a fantastic article published last October in the GAP (Good Autism Practice) journal, Volume 12, Issue 2.  It can be viewed in the attached pdf file thanks to the generosity of the folks at GAP!

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Please do not publish more widely without further reference to GAP; there is no commercial benefit arising from publication here!

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Michael and I (WonderGirl) have a long running, albeit minor, feud going regarding the speed that one should walk down the high street. He maintains it is quicker, much more fun and generally a better idea to run, whereas I always try and tell him its far less dangerous for Winchester’s population of pensioners (!!) and far more relaxing for me if he would walk by my side and keep me company. Normally we meet in the middle and he runs, not out of sight, and always waits at roads to cross with me. In addition to Alex’s blog last week, I may add that Michael was particularly hell bent on the both of us running from his house to the coffee shop last Wednesday. First sign that Michael may be slightly stressed and wanting to obtain control over the outing. So, he sped off leaving me to try and maintain a firm power walk (not too easy in skinny jeans believe me) and to try and keep him in my sight. This was not to be, Michael arrived at the coffee shop before me, though in one piece, so I decided not to make much of a fuss about it in a hope that we could walk home together.

Our coffee date deteriorated as Michael was argumentative about menu choices demanding the biggest creamiest most marshmallow-y option he could find, unfortunately today was not the day that I could talk him into a lower fat less sickly option. Michael’s bid for control did not stop there as he ran off before I could lift myself from the sofa, to order the drinks and on his return was unable to conduct himself in a usual jokey friendly manor. We managed to talk about his school and my degree for a few minutes but he soon had helped himself to my phone and was refusing to hand it back. I started to get a little annoyed with him and his constant disobedience, this was rare for me so I knew that something was not quite right. My suspicions were confirmed as over the course of the drinks Michael said very clearly in earshot of a family with toddlers that I ‘annoyed the cr-p out of him at times’ and then told me he was going to the toilet and if I hadn’t finished my coffee by the time he got back he was leaving without me. I really found myself feeling cross, a little shocked and worst of all losing control of him in a public space. Michael’s inability to wait and consider me was evidently a manifestation of something deeper at work on Michael’s stress levels, which on returning home and chatting to Alex, found out it was his experience at school affecting his home life. To try and  keep this short, Michael did run off without me stopping briefly in Game, yet showing no real interest in the shop – this was seemingly an empty demand to pacify his anxiety – and then he accelerated up the high street towards home. Try as I might I could not keep up with him and watched in absolute disbelief as he dashed across the road, and within seconds he was out of sight. Five minutes later, a very hot, flustered and somewhat embarrassed Lizzi arrived home to hear Michael arguing with Alex as to why it was acceptable to arrive home alone. Michael went upstairs shortly after and the combination of my disappointment in Michael and Alex’s understanding nature caused a few hot tears to shed. I felt like I’d failed Michael because I did not control the outing or keep him safe and my feelings alternated between this and sympathy for Michael because I knew he’d be so upset with himself when he finally would come to terms with his conduct that afternoon.
That was definitely my worst experience with Michael but he is fond of me and I’m fond of him and that combination put paid to the idea of that being my last afternoon with Michael. Come Friday, we were firm friends again…

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At the end of last term, Michael’s (9, Autistic/PDA) school told us that he was going to have to move up to Upper school, due to pressure on places on the lower school. We had no problem with this in principle, because he has found much of the work too easy; not because he is some kind of prodigy (though he is ‘high-functioning’ in an autistic sense), but because the needs of his peers at this special primary school (45 kids) are largely behavioural and they are often a long way behind.

The only problem was that his new teacher is someone he has previously described as being too strict and quick to jump to conclusions about Michael’s behaviour. We agreed with the school that he would not be told so that we could get through the holidays without him stressing out at the prospect. This worked but, of course, the first week was a bit of a shock for him and he nearly refused to go to school on Monday of the second week (the first time he has done this in ages). We spent a lot of time trying to help him understand that the reason ‘people’ jump to conclusions is that he isn’t really taking care about the way he says things. He has been answering back a lot recently, in a surly teenager kind of way. He doesn’t mean to be rude when he does this. At other times, he offers a response that is merely factual. In any case, this is naturally interpreted as rude and a challenge to authority.

It shouldn’t necessarily be like this though. Michael does need to learn how people respond to him. But equally, he needs to be approached on the basis that he lacks much of the empathy that would lead him naturally to learn how to make changes to his comments. We took the unusual step of writing to the school, in very conciliatory terms, reminding them of his diagnosis, accepting the need for him to learn, while asking for understanding. The results have been good and he has been doing better and better at school since. he seems to enjoy the greater challenges in class and has scored almost maximum points every day.

But the extra effort has taken its toll. We are experiencing significant fall-out at home. Michael’s anxiety levels in the evenings and at weekends have soared again. The main consequence is a massive upturn in aggression and verbal bullying of Ben, his 5-year old brother. he has flown off the handle frequently and been extremely intolerant of family plans and made excessive demands. We have tried to handle this calmly and have allowed separation, especially at the weekend, in an attempt to help ease his anxiety. It helps, but it feels pretty relentless at the moment.

Yesterday, I brought home some pizzas as a special treat as Sam and I had been out for the afternoon. I had foolishly bought a pepperoni and a Margherita, on the basis that I thought Ben would want the latter. In a fairly typical sibling exchange, they obviously both ended up wanting the pepperoni. Michael’s reaction became steadily more extreme over the succeeding 45 minutes to the point where, despite my having remained calm and offered numerous compromises and help to calm down, he just made it worse. I ended up, as a last resort removing the pizza option for both. I can accept an extreme reaction and a melt-down, even over his inability to go half and half. But he really couldn’t turn-around as he often does and he indulged in some consistently rude and aggressive language towards everyone else. I decided to draw the line.

By the end of the night, nearly 3 hours after I had returned home, Michael was completely over it, acknowledging that I had handled him gently, accepting that it was fair to remove the pizza and that he had been unreasonable to react as extremely as he had. I put him to bed with a kiss, telling him that I was proud he had turned himself around and that, even when he was in full melt-down mode, he had only uttered one swearword (sh**). I told him he had done really well to control this. 9 months ago, he was calling me an F****** Bi***! several times a day.

The situation continued today. Another great day at school was followed by disaster afterwards. I was on hand to look after Ben, and Wondergirl was here to be with Michael. We agreed it seemed sensible to take him out to burn off some energy and separate him form Ben. This tactic often works, but not today. He was taken to a smart cafe for a lovely coffee, but was surly, rude and totally disrepectful. He was sufficiently loud and rude that it was clearly audible to others around in a way that will have made WG feel dreadful. Michael topped it off by ordering her around and telling her that he was leaving the cafe to go to a shop whether she liked it or not. When she had caught up with him, he decided that he wanted to run home. Without waiting, he did so.

The distance is not great (800m), but there are numerous roads to cross and Michael’s ADHD means that even when he thinks he is being safe at a crossing, one can have little confidence that this is the case (he has had half a dozen accidents or near misses on roads, some ending up in A&E). Poor WG could do nothing about it and I was immediately concerned when he arrived home unescorted. He knew he had done something wrong and was evasive. I discussed the situation carefully with WG and, after thinking it over, decided that I would have to remove the pizza dinner again. He had to understand the gravity of the situation, both in terms of his behaviour towards WG and also his running off. The inevitable melt-down ensued, but again, I felt this was the right thing to do, even allowing for the anxiety that caused the behaviour.

He is now worried that he won’t get a pizza tomorrow. I ended the night with him agreeing how to find a way to make it up to WG when he sees her next. I have also told him that I am sure he will have his pizza tomorrow.

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The children who simply can’t do as they are told

Giulia Rhodes

December 17 2011 12:01AM

A new condition on the autism spectrum may explain why some children are defiant

When Max Duncan was a toddler, simple requests for him to put on his shoes or sit down for lunch would lead to four-hour tantrums. Not normal toddler tantrums – he would throw and smash things, scream, hit and kick. His parents could only protect Max, themselves and their property from harm by strapping him into a car seat in the house. As he grew older, things only got worse – on his first day at school he was asked to come off the computer to give someone else a turn and punched the teacher in the face.

His mother, Margo, a GP from Sheffield, became increasingly desperate. “I read all the books and theories, we did sticker charts to death. We ignored the people who suggested he just needed a smack. We tried family therapy because I thought it might be our parenting. None of it got us anywhere.”

While most parents are familiar with the tantrums of small children, Max’s parents were sure this was something different. The school suggested autism, although he didn’t fit all the criteria. It was another three years before Max’s condition was correctly diagnosed. Fortunately for the Duncans, a member of his local authority autism support team – who help autistic pupils and their schools – suggested that he be referred to the Elizabeth Newson Centre in Nottingham. Max, they discovered, had a little-known but increasingly diagnosed condition called Pathological Demand Avoidance Syndrome (PDA), whereby children are unable to cope with any sort of demand.

PDA may currently be little known , but that seems set to change. Experts believe the reported number of sufferers is just the tip of the iceberg. “There are so many children out there with PDA who are not getting the right help,” says psychologist Phil Christie, Director of Children’s Services at the Elizabeth Newson Centre, where the condition was first defined. “It is severely under-diagnosed. We know that around one in 100 children is on the autistic spectrum, but we don’t yet know how many of them have PDA. It is a small but significant proportion.”

So what differentiates PDA from plain naughtiness? Children with PDA essentially have an in-built need to be in control and to avoid other people’s demands and expectations, which raises their anxiety levels to an extreme extent. Christie’s colleagues noted the striking similarities between a growing number of children deemed to have “atypical autism”. They all shared an unusual resistance to everyday demands – even when related to things that they would enjoy. The children were superficially sociable but were often manipulative and lacked awareness of unwritten social rules. Their moods could switch very suddenly and they often confused reality and fantasy.

Some demand avoidance is part of normal development in young children. But PDA is marked by the degree of the behaviour, and whether it continues beyond toddler years. For most children the demand avoidance phase will pass, or can be greatly improved through strategies such as rewards and sanctions (sticker charts, time out or a naughty step), reasoning, praise for good behaviour, peer pressure and routine. But these techniques do not work for children with PDA. Instead, parents need to reduce anxiety by avoiding or disguising demands – which can seem counter-intuitive.

As for what causes it, scientists as yet have no definitive answer, although as with other conditions on the autistic spectrum, they know that the brain is wired differently – in many cases probably due to genetics – and that it is a lifelong condition, and one which is certainly not caused by bad parenting.

A major conference on PDA, run by the National Autistic Society, was held recently and a book on the condition, written by Christie and other parents of children with PDA, was published this autumn. The Institute of Psychiatry is undertaking a research project which should help develop clearer guidelines for diagnosis and support.

These are all firsts in the field and Christie is hopeful that they will raise acceptance and knowledge among medical and education professionals as well as the public. He believes that the future for children with PDA will improve immeasurably when this happens. “I’ve been around long enough to remember when there was a reticence to accept autism as a diagnosis. It takes time, but once you have proper recognition you can start to offer the correct support. The point of diagnosis is to help the child and the parents. People often talk about ‘labelling’ children as a bad thing, but a diagnosis is a signpost. We then begin to understand.”

Jane Sherwin, whose eight-year-old daughter Mollie was diagnosed with PDA in May, agrees. “It was such a relief. I felt I was being given my daughter back. We had a path to follow rather than wandering about in the wilderness, and I wasn’t to blame.”

Before the diagnosis Jane and her husband Lee were at “crisis point”. Mollie had been out of school for a year after countless exclusions. “She was totally dictating our lives – what I wore, if I could make a phone call, who could come round,” says Jane.

On one occasion Mollie’s older brother Jake had friends over. When they became sick of her attempts to control their games, Mollie had a five-hour outburst. “She was kicking, grabbing my hair, punching me, biting, throwing things at me. The doors are all broken from slamming and there are chunks missing in the walls.”

Like Margo before her, Jane realised that all the advice she had been given for handling Mollie was often counterproductive. “I had stood my ground for all those years because I thought insisting was the right thing for her sake. Actually that had caused more damage.”

The key, says Christie, is to recognise the behaviour as a kind of panic attack. “If you believe the avoidance and control is about them being wilful, then you are drawn into a confrontation which escalates the child’s anxiety and refusal.”

Like Max, Mollie is now back at school full time. She has two helpers and access to a separate classroom when she needs it. Family life is vastly improved and the “meltdowns” have become less frequent. “Things aren’t easy but I can make time for Jake and Lee. Everyone is happier,” says Margo. “We cut the demands right back. The ground rules are that Mollie cannot hurt people, damage property, or ruin Jake or other children’s games.”

Beyond this, nothing is ever directly demanded: a system Jane describes as “exhausting but gradually becoming second nature”. Tasks such as dressing, washing and going to bed are presented as a choice, and Jane accepts that the process can be slow and sometimes unsuccessful.

“If she won’t brush her teeth or eat her breakfast I leave it. I work out what matters most and I am more fine-tuned to when she is too anxious to cope with a demand.”

Jane is aware that many people would dismiss her daughter as plain naughty, and in need of a firmer hand. “People do tut and stare. I feel embarrassed but I also feel angry. They should live my life for a week,” she says. “People have asked me how it is that these children weren’t around 50 years ago. I say they were probably in an institution.”

Almost all parents of children with PDA experience this lack of sympathy and understanding, says Christie. “As awareness rises that will ease, but it is still very difficult. There are sceptics but we see these children. We know it is real.”

For Jane the proof, should she have needed it, is the change in Mollie’s behaviour. “We can have fun together, she is affectionate again. I feel hopeful for her future.”

PDA: the signs

A degree of demand avoidance and opposition is typical in all children, so identifying Pathological Demand Avoidance Syndrome (PDA) is difficult, particularly in pre-schoolers. The key is the degree of the behaviour, and whether it continues beyond toddler years. If your child has started nursery or school and is developing differently from his or her peers, with tantrum-style behaviour that is more appropriate for a two-year-old, it might be a sign of a problem.

Unlike other autism spectrum disorders, PDA affects boys and girls roughly equally.

In a child with PDA, simple requests to do everyday things can trigger outbursts. Most typically these include getting up, dressed, and ready for school, leaving the house, and joining in family meals. Even actions that the child might enjoy, such as playing a game, might trigger a reaction — anything where the child feels that control is being taken away from them.

The child may indicate its distress in the following ways: being distracted, making excuses, employing delaying tactics, retreating, arguing, or becoming violent. Initial research findings show that boys are more likely to react with aggression, and girls with manipulation.

Traditional parenting techniques involving rewards and sanctions, reasoning, praise and routine will actually increase the anxiety of a child with PDA.

For more information and advice on PDA see pdacontact.org.uk or autism.org.uk, or read Understanding Pathological Demand Avoidance Syndrome in Children by Phil Christie, Margaret Duncan, Ruth Fidler and Zara Healy (Jessica Kingsley Publishers, £12.99).

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One of the aspects of PDA is the cyclical periods of peaks and troughs.  We have recently had a period of Michael riding (and us) on the peak of his wave but recently he has been surfing down the wave and taking us with him (or perhaps I should speak for myself!).  Sometimes either Alex or I find Michael’s troughs more difficult than other times. I am struggling with this trough.

I have had a lot going on this week and most of it is worthy of a blog in itself but although I am keen to write, I just seem to run out of steam by the end of the day. I mentioned that I would write part two of “Will things ever change” and I will come back to that soon but I would like to write about today first.

I went out for a run with Wonder Girl (WG) this morning, just before 8am, in our challenge to get suitably fit for our 10 mile race in a couple of week’s time.  It was the most amazing, crisp, clear autumn morning.  We ran along the water meadows of Winchester and out towards the Itchen Valley.  It was beautifully picturesque and it was magic but by the time I got back, at around 9, Michael was clearly in a needy mood.  Unusually, Alex was having some ‘Alex time at home’, watching the rugby World Cup semi-finals.  I came in with a lame WG, who was in much need of a bag of peas on her knee and a cup of coffee. In the time I took to sort that out, Michael had spat in my ear and was in WG’s face being loud and disruptive (there was also a quick escalation into casual swearing). Michael then demanded a trip to Cafe Monde for breakfast.  I suggested we might cook something at home but it was ignored.  I asked if I could finish my coffee before addressing this.  Whilst I was chatting to WG, Michael had gone ahead and put oil in a frying pan and put it onto the hob with the gas up high and had then forgotten all about it.  Soon after, the kitchen was full of smoke and the fire alarm had gone off.  WG left and Michael then demanded coffee. I suggested he have breakfast first and he responded by marching up to the coffee grinder and proceeded to drop a container of freshly ground coffee on the floor.  While I was cleaning up the coffee, Michael took out the last egg and decided he was now going to make a scrambled egg.  He whipped the egg, melted some butter in another frying pan and whilst doing that, managed to knock the bowl with whipped egg on the floor.  Ben was unhelpfully telling Michael how clumsy and fussy he was.  Michael left the mess to go pick a fight with Ben (with more swearing from him).  I was in the middle of a Peace Negotiation Process when Michael absconded from the negotiations and returned to the kitchen for another attempt at making coffee.  I am not sure what happened but when I went back to the kitchen, there was no coffee in the coffee maker and coffee granules in every nook and cranny in the kitchen.

By the time Alex came down at the end of the rugby match I was rather frazzled, stressed and short tempered.  It was 11 o’clock and I hadn’t even finished cleaning the kitchen, Michael still hadn’t eaten any breakfast, I was bad tempered and I hadn’t been near a shower yet.  I unfortunately let out my foul temper on Alex who quite rightfully said, ‘why have you let me watch the match if you were then going to give me a hard time for the rest of the morning?”.  He was quite right, so I went upstairs with my tail between my legs for a shower.

Soon after, I took the boys out for a play while Alex took the car to the garage.  Michael wanted to play basketball and Ben wanted to come along.  Michael wanted me to play with him but didn’t want Ben to take part.  I tried to include Ben but he was getting very few opportunities to touch the ball as Michael was frustrated with Ben and kept snatching the ball off him.  Ben soon marched off in a huff.  I mentioned that this was clearly not working and perhaps we should go for a walk or a coffee (personally I favoured the latter!!). Ben was refusing to move (in his huff) and I suggested to Michael that he might have a word with Ben as Ben was upset at Michael shouting at him, telling him he was a rubbish player and snatching the ball off him.  Next thing I know, Ben is kicking Michael and Michael is calling Ben a b****.  I aborted mission and marched everyone back home.

Michael then went to a birthday party.  The family know Michael and us well.  I didn’t think he could handle it given his state of mind but they gave him lots of chores and responsibilities and he seemed to be doing ok.  It might be worth mentioning at this point that we don’t do birthday parties.  Michael can’t handle them and he isn’t invited to any.  He goes to 2 birthday parties each year: both friends whom have additional needs.  In both cases, the birthday party consists of Michael and his friend playing together, a pizza and a slice of cake.  Michael is happy with that and so are his friends.

Today’s party was with a different friend and they went to a ‘ringo’ party at a dry ski slope.  All looked good until Michael had to give someone else a go.  He immediately tensed up, announced he was bored, climbed the railings and started threatening me and the organisers (again more swearing).  Fortunately he settled down when he had another go but when we got back to our friend’s house, he started attention seeking.  The boys were watching one of Michael’s favourite tv programmes, ‘The Adventures of Sarah Jane’, but he was unsettled and kept saying he was bored.  He wanted me to go outside and play football in the dark. I didn’t want to and felt guilty telling Michael to find something else to do.

It was at this point that I started discussing Michael’s restlessness with our friends. I explained that when Michael is on good form, it is easy to get used to it and to be lulled into a false sense of security and that when things are good, it raises my expectations.  When things go downhill again, I tend to get frustrated and complain that Michael can’t do things for himself, is really needy, starts negative attention seeking and displays undesirable behaviour.  Our friend (a psychologist by training) observed that when people are needy and displaying inappropriate behaviour or language, they get a lot of attention and help.  He suggested that we should be careful not to get into a cycle of not giving Michael extra attention when he is on good form as he may then subconsciously start displaying more of the negative behaviour to get my attention.  It really hit home.  I ditched my glass of wine, went upstairs to an unsettled Michael, cuddled him, told him I could see he was finding it difficult and was sorry for not coming to him earlier.  He cuddled up and noticeably relaxed.  I then took him out to get some poppadums at the local takeway to bring back for everyone and spent some time chatting to him, with my undivided attention.  He was much better for the rest of the evening and it just reminds me that his mood swings are out of his control and that yes he needs my continuous positive reinforcement whether he is on a roll or finding life all a bit too much.

 

 

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I got a new job in July and have been nose to the grind-stone pretty much ever since. It is very exciting and I am feeling really driven. I am delighted to say that this has been matched by a happy period in our life with Michael too. Sam has been doing a cracking job of keeping the blog going, while I have been more than a little remiss!

I am delighted by the way Ben has started his first year at school! He seems to be just like a normal little boy, almost without the sorts of social difficulties that we have seen over the last few years. He is confident in class, asks questions and is making freinds. I can’t believe how wonderfully he is doing. His nursery have done such a good job, but I also think that Sam’s tireless devotion to giving Ben all the time he needed to feel reassured over the last few years has been incredible. She has taken a lot of nonsense from him in her stride, much as it has upset her inside and when we talk about it in the evenings. My boys and I are really the luckiest chaps in the world! I feel such huge love when writing this, so sorry to be soppy!

Michael is also starting the year well and is getting good scores at school. He seems settled outside school and is sticking with a range of activities (archery, golf, drawing/painting) for much longer than has typically been the case in the past. He is responding well to praise as well, which must mean he is feeling incredibly good about himself. A typical trait of PDA is to respond to praise e.g. of a drawing, by ripping it up, or of a sport, by refusing to play again. Both of which he has done in the not too distant past.

But tonight, as Sam went out to see her foal, Daisy, for a stolen hour in a hectic week, Michael suddenly seemed not to cope, and I wasn’t really ready for it. All I had suggested, after a very successful supper that he had enjoyed helping to cook, was that we go upstairs to get showered and changed in time for Mummy to come home and read stories. But no, he had to wait outside. Already getting late and knowing that Sam could easily be another 30-45 minutes, I was insistent. I remained calm, but could not pull up in the face of an apparently inevitable dive  to massive impact. Sometimes being calm, but insistent with only a little leeway isn’t enough. I felt that, with some encouragement, Michael should be able to find a reason to climb down. Often I have success by imposing sanctions that are quickly rescinded on compliance. Not this time.

His swearing has been much better of late and I had congratulated him on this only the night before. Even here, he only went as far as to call me a ‘son of a b****’. Almost no other bad language. So on balance, he was still trying hard, deep inside. Sam came home in the nick of time. I seriously question whether I was just trying to get my way by the end of it. I wasn’t being angry and was showing some understanding of his anxiety. But at bottom, I wasn’t really prepared to shift my position,by letting him wait up for 30 minutes to see Mummy before he had a shower. If that was so important to him tonight, it doesn’t mean that he is going to insist on it every night. Just tonight. And I couldn’t let him.

 

 

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