Thursday 28 May 2015

I lay on the floor and carried on talking....he didn't notice!: Thomas from Born Naughty episode 3

Most people have an idea of what a person with Autism might be like. This will depend on their previous experience or what they've watched for instance when Rain Man with Dustin Hoffman was shown, people assumed all children with ASD were like that with extra abilities in one area. Many teachers tell me they've worked with children with autism before when I'm discussing a potential new one, as if that makes them experts. The real truth is that the spectrum is so wide and each individual so different, that its very hard to be an expert in all aspects of ASD: 'when you've met one person with autism, you've met one person with autism' is by far the best quote I've come across. We must be aware of the aspects of ASD and potential strategies to help but each will require their own individual programme.

Diagnosing ASD can be very straight forwards with some children because the red flags are so numerous while others can be very difficult because they have become skilled at coping and the right questions must be asked in the right situations. Dr Ravi from 'Born Naughty' says that for  some children, its like appraising fine art' so just like some of us may look at a Picasso and think that's definitely NOT art, others would be able to admire the subtle messages portrayed within.

When you first met Thomas, you don't see any red flags initially: non verbal communication, language skills and even pragmatic skills can  look to be within normal limits to the un-trained eye. I saw him in a clinic situation at first, we chatted, played a little and did some formal and informal language assessments. He coped well with the filming and having to do things again for the camera angle. We'd dedicated the entire afternoon to the initial part of the assessment so we had a tea-break in the middle.

At this point, I hadn't spoken to his mother very much as my plan was to see her after Thomas so he could get something to eat and so we weren't talking in front of him. While we were in the kitchen area, she showed me her phone with a video of Thomas having a temper tantrum. It wasn't a major one, in fact as a mother of a child the same age, I would say it was  5/10, BUT my son would be absolutely mortified if he thought I'd told anyone let alone, videoed and shown it. Was Thomas bothered? No way, he didn't see that I would think anything.... he has impaired perspective taking, he couldn't put himself in others shoes (no theory of mind) and I needed to explore that route.

I saw him at his special sports club with his instructors: he didn't follow any instructions yet told everyone else what to do. The other children all attended special, schools but he didn't notice their differences.

I spent some time at home before doing the first session of social thinking (Garcia-Winner) which is about being  a social detective. I introduce the session and then lie on the floor while I'm still talking...... did he look shocked, look to see where I'd gone, say anything about an adult lying on a classroom floor? NO, he carried on talking!! I got out the ASD assessment!

Sure enough he scored a profile which together with the parental interviews and Ravi's observations, would suggest mild to moderate ASD.

With the programme, you get a  snapshot of the assessment, which actually took several days over a  month. Thomas was seen at home, in a school setting, sports group setting and in a clinic by me and at home by the Paediatrician. I interviewed parents on three separate occasions too. ASD diagnosis needs to be thorough to be sure.

Perspective taking and high level ASD is fascinating and we'll look at that more another time.

Tuesday 19 May 2015

A story about Autism by Luke ....and my brother is called Tomas

Author and illustrator Egle Gelaziute-Petrauskiene has written a lovely book about her son Tomas who has ASD. I thought you'd like to hear the story behind the book............

It was October 2006 when we moved to the Midlands  - Tomas and Lukas were two and four – Lukas started at nursery – me and Tomas started visiting play groups, started making friends. Tomas learned some English words, few names and also to sing happy birthday‘

We visited places, and then winter came with viruses and ears infections, temperatures and medicines ... lots of crying and sleepless nights.  – In  spring we noticed that Tomas made no progress in any areas. It was June we were asking him repeatedly ,what colour are your socks?‘- which was red‘and it took twenty repetitions to get any answer from him. He did not want to answer. Just ignored . He did not wanted to look at what we showed. To say his name – he wanted to play with sharp knifes and empty bottles. Kept walking around repeating same phrases 'tom tom put bottle' . And then all the questions we asked ourselves – why he is so cry baby in public places, why he does not ask questions, why he is happy just be left alone, why he is so clingy, why he does not want to play on slides and climbing frames any more, why he is scared to death of shower and bath and stairs, why he does not like listening to story books, why he does not play with toys just building towers from everything? 

It takes time to realise that you need to look for help, especially when you think you have an ordinary child – that disorder is so difficult to spot, to believe to and understand – your autistic child looks quite normal one day, then tomorrow you think, no, something is not right‘ – and next day he does something bright again, it is not visible, it is not even clear at the start – it took us till Christmas to phone the health visitor to share concerns... Tomas lost most of his previously-had speech when he was three and half. And got the diagnosis 'working diagnosis of autistic spectrum disorders‘ next spring. He was most severe one from that small group of kids who went for assessment together – he could not even put any simple puzzle together nor sit still for a minute. Constantly on the move with no purpose. Autism  is a vast spectrum and Tomas is somewhat near the bad end, but it takes years to accept it. It takes lots of energy to swallow it and try to  find ways to help, as no proper help is readily available. We new only very little about autism at all, almost nothing, so had to read and find out what to do.  We had to rule out all treatments advertised on line – dolphin therapies and food therapies, food supplements made from see weeds and so on. And it is everyday life to cope with tantrums and eating nothing, door banging, no sleep, poor sleep. It took few years to accept that most likely he will be like that. That's how he is. And we love him even more.

This book I wrote when Tomas was about seven, Lukas friends used to come round or play in garden and stay for tea, we had to meet other kids in school summer fairs, outings, parks – I realised it is not  clear for kids, not even for adults, as if it would have been to me before Tomas why is that – why he is screaming and shouting, why he is eating so strangely and why he is allowed to do that, why we cant accept invite to party in swimming pool, why mum looks too tired – all that.  Autism  is invisible disability.  You have to explain a lot. Why why  why? When he will talk ? Will he grow up and will be normal? In the book i tried to explain things through Lukas point of view – using simple words and lots of illustrations.  About everyday life. That's it- we live with Tomas and life is a bit different because of that. We do not know what future holds for him and us, but no one knows. So I just hope that this book will be helpful and will give more understanding about families affected by autism.
 We also rise money from this book  for NAS Stafford branch and, as this playgroup was the place were we could turn for advice- they try to find whats around and having opportunity to meet other families in same situation is priceless. No judging looks at your child there too.

And yes, if you see a child in the park running quickly to you to fetch your bottle of drink paying no attention to any protests (and mum running after him) that might be someone just  like Tomas. Be patient, be aware that autistic kids and they families exist, and they go to parks too..and they try their best to behave! Do not tell them off.

Tomas mum,  Egle Gelaziute-Petrauskiene

This book will be available from our new website when it launches next week

Saturday 16 May 2015

What is Pathological Demand Avoidance?

Image result for born naughty channel 4 nature and nurture honey
If you saw the Channel 4 documentary 'Born Naughty?' last thursday, it might have been the first time you had come across the term 'pathological demand avoidance' or PDA for short. It is still not recognised by many professionals but I'm sure it's only a matter of time before they do though!

Elizabeth Newson in the 1980s found that there was a group of children who had ASD but that they had distinct characteristics. 

The main features of PDA are:
·         obsessively resisting ordinary demands. If you view the child a being extremely anxious, the everyday request can be the straw that breaks the camel's back. It's about threshold and tolerance levels which can be very low. The more relaxed they are, the higher these can be. Absolute refusal is common but other techniques can include 'shocking' tactics or use of behaviour/language designed to  put the reciprocating adult off their stride. I can't repeat on here, some of the things that have been said to me! The brighter the child, the more bizarre the behaviour they can counjer up! Many of the children I have worked with have had social workers who have had to come in pairs!
·         appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on). This can be the smoke screen that causes others to dismiss ASD, as social communication is such a key part to an ASD profile. This level of sociability can lead to the child being able to be very manipulative.
·         excessive mood swings, often switching suddenly. This is usually observed in all situations and worse where they aren't as relaxed. However, Parents report that sometimes, children can change as soon as they get home. This is because they are stressed throughout the day, manage to hold it in and then explode where they are more relaxed. I think its like a bottle of pop, shaken all day then you take the top off!!!!. Parents are often the brunt of the behaviour. The signs of anxiety can be many things but can usually be spotted, they include obvious body tension in hands, shoulders etc but you can also spot other things including their voice becoming higher as the tension affects their larynx. if you can identify the signs, it is sometimes possible to diffuse before a problem occurs. I have been very lucky to date to have been able to do this during assessments, so in the case of one child, was the only professional to avoid attack!
·         comfortable (sometimes to an extreme extent) in role play and pretending. I have found that the pattern of play is different so that they like to control the play with others eg I observed a 6 year old playing 'mums and dads' which looked appropriate but was actually her fully controlling the situation. She wasn't able to listen to any suggestions from others. Honey from Born this way programme 1, played 'dressing up' with my colleagues Charlotte and Frances but she dressed them not the other way around.
·         language delay, seemingly as a result of passivity, but often with a good degree of 'catch-up'. At first sight it can seem totally appropriate BUT closer analysis shows they are hiding it well. Coping with receptive or expressive language issues and masking them from others must take so much effort and is in itself anxiety provoking. 
·         obsessive behaviour, often focused on people rather than things.
All  behaviour is telling us something and as professionals we  need to identify the cause. there's no point in just working out a behaviour management plan unless we are addressing the core issues. The behaviour is merely the symptom. Many of the traditional ASD strategies don't work or don't work consistently but should still be tried. If we see PDA behaviour as 'panic attacks' it helps us to cope and deal appropriately. If we can help them manage the anxiety, reduce the the things which cause anxiety and help with any receptive and expressive language issues, we can go a long way to help the child.
There is no magic wand cure for PDA and the demands on their family is unimagine-able. Parenting is hard enough in usual conditions, so I take my hat off to each and every one!

Thursday 14 May 2015

Honey: Channel 4 'Born Naughty' Programme 1

Born Naughty?

You might have (briefly) seen me on the Chanel 4 programme 'Born Naughty?' I was involved with Honey, a 9 year old girl who was having lots of behaviour issues.

I saw her for the first time at the Children's Centre in a small Staffordshire Village, which is within the local library. I planned for her to get there at lunchtime, while it was closed, just in case we had any problems. I knew that she wasn't in school and could be difficult to manage.

Dr Ravi Jayaram, the Paediatrician and Dr Dawn Harper, GP, had already seen her at this point and had felt I was the relevant 'expert' for the job. My remit was to assess her language and communication skills and to see where that lead me including taking part in an ASD assessment .

It took a while to get Honey into the room (#understatementoftheyear), with her Mum being the brunt of her feelings. When she agreed, she said that cameras couldn't come in. I started the session with photographs of all the activities we were going to do and asked her to put them in the order she wanted to do them in. This gave her a sense of control.

I screened her language using an ipad app and various informal activities. I'd got a bubble wand as one of the activities both as  a motivator and as a reward in the middle of the tasks. Unfortunately it was raining extremely hard but a promise is a promise so we went outside to do this.

I think she felt sorry for me then as we were both soaking wet through so she agreed for the cameras to come in. I carried on looking at her expressive language using a narrative exercise. She joined in the activities but was very anxious. This was exacerbated when I asked her to re-tell the story: a palpable wave of fear emanated from her. To diffuse down the situation, I stepped into help. She completed all the required tasks.

After the first session, I knew we had a child who was very anxious with difficulties with receptive and expressive language and social communication but not enough information by any means!

We decided to capitalise on her love of animals and go to Nature and Nurture Therapy Centre at Sunshine Barn, in Ashbourne, for the next session. This is run by Frances Weston a counsellor with experience of many types of childhood issue including ASD and anxiety. I also took along Charlotte Williams, an autism therapist so they could both help in my assessment of Honey's needs. I like to work with others when doing an ASD assessment, not just a clinical psychologist and paediatrician but others with potentially different viewpoints if possible, so all factors are covered/considered. A diagnosis of ASD is a label for a lifetime so the NICE guidelines are essential as a minimum.

WOW!! What a difference. She was greeted by Tilly the therapy dog and came in quite happily. She spent some time familiarising herself with the other animals: Bertie and Beatrice the sheep, the ducks, the chickens etc and was fully co-operative for the entire afternoon.

I was able to complete a formal language assessment and various other tasks for an ASD assessment. Then later, while I interviewed her mum, Honey played with Frances and Charlotte and of course Tilly. This was quite unusual as Honey doesn't normally let her mum out of her sight in new situations.

Honey's mum has a really good understanding of Honey's difficulties. She lives with them everyday after all, so we were able to get a really good profile of Honey's strengths and weaknesses.

It was a very productive full afternoon and it was fantastic to have both Frances' and Charlotte's expert observations. We were able to report back our findings to the paediatrician. The findings from both sessions confirmed that Honey was on the autistic continuum. Her profile however,was not typical, rather it fitted the criteria for Pathological demand avoidance PDA).

As you saw in the programme, if you watched it, the positives of having a diagnosis are tied up with people's understanding of her behaviour. If we view it as 'panic attacks' its easier to stay calm and cope. The Elizabeth Newson Centre was also able to offer some different parenting tips. However, a note of caution: a diagnosis doesn't take away the extreme difficulties of Honey and her family. The diagnosis is only the beginning. They still have to live with this and do their best to get through each day. I have the utmost respect for them and hope I'd do half as good a job in that situation!

We'll look more about PDA next time.

For more information about Sunshine Barn please go to

Wednesday 13 May 2015

Update on Fred: 2year old not talking

You might recall I talked about Fred who wasn't talking and that I'd made some suggestions:

1. To take the pressure off making him say things, so don't ask to repeat or ask too many questions in a story (handy rule 1 question to 4 comments). He is a very strong personality and knows whether the adult knows the answer so is unlikely to 'play the game'

This has been very hard as his mum is feeling very pressured by her group of friends who like to discuss how well  their children are doing. She feels some of them look 'pityingly' at Fred while others actually say, 'Isn't he talking yet?' We discussed the fact that Fred is so bright to be able to get what he wants without talking that she must acknowledge this, smile and rise above. Any parents have any better ways of dealing with this?

2. Step up the opportunity for him to as make as many choices (non-verbal at the moment) see

Fred now chooses what he wants for drink and snack from a choice of two things. He does this by pointing to the preferred one. We discussed ways of building on this e.g. which tops to wear,which video to watch

3. Encourage non-speech noises e.g. animals, vehicles etc  

Wow, this has come on brilliantly! He can't repeat if asked but will spontaneously make the noises.

4. Keep adding language to his grunts/noises adding what you think he'd be saying if he could talk, children learn by echoing to start with so need a model to echo

His Mum is excellent at this e.g. he pointed out of the window and she said 'go outside?'  waiting for a response, 'Yes we will in a minute.' He brought an empty packet of raisens to her, she  said 'more raisens? etc

5. Use repetitive rhymes to hesitate on words to give him chance to add the approximation of the word (don't care how he says it just that he has an opportunity).Work out which songs and words so  both parents do the same.  

Fred now joins in with the missing word. His pronunciation is approximate ie only sounds  a bit like the missing word but that doesn't matter. I'm delighted!

6. Make a word book of Fred's things and people using photographs
His parents have done this on the ipad. We discussed printing off and putting in a book that she can use to show people a) as interaction b)in case we don't know what she wants, it will may give a clue

Fred cannot make noises on request and there is some groping when he tries to repeat which needs monitoring as it could indicate a motor planning issue. He can bob his tongue out in game but not if he is asked to. We decided to introduce Makaton as Fred already know some signs from Mr Tumble. This will ensure he has a functional communication system which will alleviate the stress for all concerned. It wont stop him talking, it will help. 

We'll keep you posted!