PDA: anxiety based demand avoidance or 'oppositional' and 'stubborn'?

Pathological Demand Avoidance is often met with mixed emotions by professionals. Some believe it doesn't exist. Others explain it as part of the autistic spectrum. Yet others argue it deserves a separate diagnosis that should be recognised in diagnostic criteria such as the DSM or ICD manuals.

Whatever you believe, I want to share my thoughts. Thoughts based on real life experiences of meeting young children in mainstream and special school settings; based on my trialling different approaches - and of course the responses I have had.

One young boy, probably 6 or 7, was in a mainstream school. He struggled so much in class that his school employed a teaching assistant to work 1 to 1 with him in a separate classroom. I went in to carry out a series of assessments. I was advised in advance it was difficult to instruct or direct him. So I went in the room and joined in with what was already going on. I gently and gradually unpacked my first assessment materials and went back to play. I then invited the adult to come over an have a look. After a while I started to 'test' the adult but we ensured she got things wrong. We then wondered out loud "I wonder if anyone else can help..." He came over immediately and before we knew it he was willingly completing the assessments. Eureka! I went back to the office and looked up advice and strategies but was disappointed to find only descriptions of this condition, not practical tips. I then typed up some ideas and sent them off with my report.

Roll on a couple of years and I am in a special school. I have worked with 2 or 3 young people who, although with more significant learning needs, also appear to have the same difficulty - coping with demands. Everything is great during relaxed, child-led play. Interaction is rewarding, language flows and there is a great sense of calm. But the minute you decide to take control and suggest going somewhere else or doing something else, it is a trigger for a very unhappy child who absolutely will not do as you say. No amount of bargaining or insistence seems to work. Autism friendly strategies such as countdowns, traffic lights and visual timetables don't seem to help much or at least not consistently.

So what do we do? I firmly believe that these are a group of people with very real anxiety disorders. Their anxiety levels get raised very quickly and very high whenever they feel control disappearing. The more demands placed on them, the worse the anxiety. It can spiral and spiral. So do we all get anxious from time to time. And when WE get anxious, we expect people around us to understand. We need people to be calm, to reassure us, to pamper us, to do things for us, to give us things we like, things that will help us relax. So, I figure, we really need to do the same for these children.

Approaches that are non-directive in nature include Intensive Interaction and Hanen. In my experience they really do work. And, once you have followed the child's lead there is no reason why you can't feed in language and education in a non-threatening way. Get in touch if you would like support with your child who has significant demand avoidance behaviours.

Let's make a deal - getting the job done

Yesterday I had the task of completing 3 assessments with a 6 year old boy. We only had an hour, so I needed to get it right. On a previous classroom visit I noticed him looking at a book about trains (mental note to self - he likes trains). When I walked in to get him, he was just starting quite a large jigsaw.

Uh-oh, I thought. This could take a while. I suggested we go to do some 'special' work, but he said, 'No, I need to do this jigsaw'. Hmmm, I thought, I need to think of something else. 'Why not bring your jigsaw with you? We can do it together. We could even see if we can find a train to play with.' It worked. He put the pieces back in the box and willingly came along the corridor. We chatted about transport on the way and he relaxed. 

First hurdle tackled successfully.... now for the assessments. Unfortunately, on reaching the room, he wanted to get back to the jigsaw straight away. My rather boring looking assessments just couldn't compete. So what next? Give up? Engage in a battle?

No. I used the 'Let's make a deal' strategy. Quite a verbal little boy, all he needed was a verbal approach (but you can make a it visual for children who learn best that way). 'Let's make a deal,' I said, 'Do 3 pages of my book and then we do 3 pieces of jigsaw, 3 more pages of the book then 3 more pieces of jigsaw,' and I held out my hand to shake on it. It worked! He liked the idea, and for the next 30 minutes we stuck religiously to the deal. He even jumped up after every 3rd jigsaw piece, keen to get on with the assessment. 

Why does this strategy work so well? Well, it allows the child an element of control. He doesn't have to give up what he wants to do completely. It is also quite an adult way of dealing with a situation. We do it all the time with other adults, e.g. 'I'll cook and you can wash up'. Children like to be treated like grown-ups. Another child I know will do anything for the chance to carry my fob and lanyard as it makes him feel special and in charge. We don't always have to be the 'teacher' telling them what to do.

Give it a go and see how you get on. I find it works well for most children, especially those on the autistic spectrum who both love being in control and have a special interest you can use as the deal maker.

Understanding Apraxia of Speech or Verbal Dyspraxia

Apraxia of Speech (American terminology) is known in England as Verbal Dyspraxia. It describes a condition in which speech clarity is affected by decreased co-ordination of the oral muscles.

In other words(!) the jaw, lips and tongue don't quite work together and get it right. Children - and adults - can be affected to differing degrees. Some will respond to just a small amount of therapy if their difficulties are very mild. However, for most children with this diagnosis, it is a long road of regular therapy and practice.

So dyspraxia is when co-ordination of the muscles is impaired. Dyspraxia can also occur on top of a muscle weakness (dysarthria). When this happens, it is really important that therapy addresses the muscle weakness first, rather than simply trying to get better co-ordination - as this would only achieve better co-ordination of weak muscles.

I have seen features of dyspraxia in many children who are on the autistic spectrum. This isn't surprising when you consider that motor planning difficulties are common in children with autism.

Traditional therapy for verbal dyspraxia focuses on auditory and visual methods of input followed by lots and lots of practice. If this approach works, then great! That is all that is needed. There are different published programmes such as the Nuffield Dyspraxia Programme (UK) that do the job.

But what traditional therapy does not do is account for those children who learn best through tactile methods. They need auditory, visual AND tactile input in order to learn what to do with their mouth. That is where Talk Tools comes in. It offers an approach that helps this particular group of children transfer their muscle skills (muscle strength) into speech. It also allows us to provide a more holistic therapy environment, considering eating and drinking skills as well as speech (they are all joined up).

Visit my website for details of how to get in touch for an in-depth assessment or treatment.

How Psychological Theory Helps Speech and Language Development

When I was studying to become a Speech and Language Therapist, I also gained a degree in Psychology. One person who stood out during my learning was a man named Lev Vygotsky. I studied his work in relation to child development. To this day I continue to follow his theory known as the Zone of Proximal Development.

This simple, yet powerful, theory makes a lot of sense to me and can be applied to all areas of speech, language and communication. It happens naturally in societies that are not organised into schools, teachers and pupils.

First you need to know where a child is at right now. What can he or she do? What does he or she know? For example, he can complete a 6 piece jigsaw. She can speak in 2 word utterances.

The zone of proximal development refers to what comes next. It contains knowledge and skills just beyond the child's current level, that is just within reach, that will stretch and encourage. Exposure to this zone is what is needed, whether in the form of peers who are a little more able, or in the form of an adult who offers a model of what comes next. This would include showing and helping him to complete a 7 or 8 piece puzzle, adding a word to make up 3 word utterances.

So you know where the child is now. You add the zone of proximal development. Then you add in some scaffolds to help the child cross to the next level. Then you start again.

To learn more about my work, please go to my website.

How to help a child to use his language functionally

Many children I have worked with have had the following problem: they are developing their vocabulary but they don't always use it to communicate. Sometimes they may talk at home but not in school. Sometimes they speak in certain activities, such as when naming in a favourite book, but not in others. It can be frustrating for everyone involved. I have seen it in children who are on the autistic spectrum as well as others who have a language delay and may have a passive personality.

A technique that often (but not always!) works is called 'Sabotage'. This involves creating communication opportunities, ie the child has to say something otherwise the activity doesn't work. Some examples of sabotage include:

1) Ooops! I forgot....    You give your child a bowl of cereal and milk, but no spoon. You wait. You might even encourage him to eat up. If nothing happens, simply model the word you want to hear. It could be 'spoon' or 'help'.

2) Say something silly....  You are counting '1, 2, 3, 4, 27...' Again, you wait and pause. You might say '27? Is that right?' You can model the word 'no!'

3) Do something silly.... You try to put socks on your child's hands

4) Put something in sight but out of reach... You put your child's favourite toy on a shelf he can't reach

5) Be really mean with quantity....  Give your child just a tiny drop of juice in a cup, or just one crisp

Another technique is called 'sentence completion'. This is when you help your child get started but leave out the key word for him to fill in. An example would be when you KNOW he really wants something but he is just pointing or maybe screaming. You help by saying, 'I want....(train)'
Or he is struggling to get going with the zip on his coat. You help by saying, 'I need...(help)'

A new AAC tool to add to the tool kit

I was listening to an audio book last night and discussing how your mindset influences events in your life. So a positive mindset will lead to positive experience, negative to negative - in a simplistic nut shell.

I also knew that today I would be attending a training day on PODD (Pragmatic Organisation of Dynamic Display) - I can see why it is just called PODD! Now my knowledge of PODD was very limited. All of this limited knowledge was via a colleague and I didn't really know whether it was for me, or whether it was for the children I work with. I had also learned that the original 'free' place might have become a 'paid' place. It was hard to wake up with a truly positive mindset. I wanted to be positive but couldn't genuinely do it.

But after 30 minutes that all changed. I had, by the way, made a conscious effort to be at least open-minded. I mean I wasn't negative and set on being a doubter or one of the 'no' camp. The presenters were engaging and they put across the same ethos and principles I believe in - the need for genuine communication (not contrived), the need for communication everywhere, with everyone, all the time (if that is what the child or adult wants), and the need for a two-way process (not just something the child/adult uses but me too). Throughout the day my open-mindedness changed into a definite positive mindset. I like it. There is enough space for PODD alongside all the other techniques I know. It will add another dimension to the environment and to one to one conversations, it is appropriate for children with differing clinical needs,  including autism (it really highlighted what PECS just doesn't do). This positive mindset means that I can and I will be using this successfully with my clients. No questions, no obstacles. Just mindset.

For a small insight into how it works, there are a number of youtube clips. To enquire about my work or to book an appointment, please visit my website. 

What is your goal? Begin with the end in mind

We are obsessed these days with setting goals. Sometimes the goals get in the way of the whole thing, we get stuck on the detail and miss something really great that has happened while we took our eye off the prize, while we were busy with the paperwork or the checklist.

It is a really difficult one. Do we set goals? Do they need to be specific or is it ok to be general? I remember when I was still a student that I assumed that for every child I saw the goal would simply be 'for the child to have age appropriate skills' in whichever area we were working, be it speech clarity, understanding or expressive language. Simple right? Hmm that's ok and is probably in the background of most cases, and that's ok if it means we are looking for progress - we should be looking for progress unless we are aiming to maintain skills. Aim high and you will move higher, but aim low and you will certainly stay low. But goals in reality end up being much more personalised and varied, depending on people's motivation, expectations, standards, hopes and dreams; depending on medical conditions or diagnosed learning difficulties; depending on people's values - is there a trade-off between determined focus on skills and relaxing and being happy?

I have always struggled to fully buy into the goal-setting culture. This is my reason: what if you set amazing specific, relevant goals that are easy to measure etc. etc. but 8 weeks down the road the child doesn't meet them, BUUUT they do make progress in a completely different area? Does that still mean they 'haven't achieved'? or does it just mean we set the wrong goals? Let me explore the technique of Intensive Interaction in this way. I am passionate about Intensive Interaction and its benefits. But if we apply goal setting we end up saying things like, 'my goal is to get more eye contact', or 'my goal is for him or her to copy me when I say "more". For me that limits the approach and misinterprets the philosophy of the approach in one big double-whammy. Do the approach with no strings attached and you will definitely get results. They will be big and they will be general. The child's whole social interactive ability will improve. Not just eye contact or repetition of a word, but enjoyment, joint attention, improved concentration, calm behaviour and many many more skills.

I do agree with the need to know where you are going though, not just aimlessly wandering along. That does help. Know what you want to achieve, not just 'we want lots of therapy', ask the question, 'why? why lots of therapy? what will that achieve?' and you will be much more positive along the way, working towards a meaningful objective.