My thoughts on selective mutism as part of a demand avoidant profile.

Guest Blog by Rachel Tenacious

As background, H had been described as being "Unable to talk when she is anxious" by an Educational psychologist when she was 11. I went further when she was falling out of the mainstream school system and described it as "Effectively Non-Verbal when stressed". Another parent first used the term Selective mutism to describe her difficulties when I  described  H to them.

Sophie Harding and Libby Hill from Small Talk  agreed that H does have SM when she was 15.

I had begun to learn about demand avoidance and low arousal before I had heard the term selective mutism.  At fist I was unsure whether H fitted the PDA profile but I needed to gain a better understanding of her if we were ever to attempt formal learning again so I headed off to the NAS PDA conference in Brum in November 2016.

What I learned there was going to be life changing for us. The experts talked about a group of autistic people who demonstrated extreme demand avoidance but were not explosive or aggressive physically.

This was my lightbulb moment. H fitted this group perfectly and always has.

H avoid  everything that makes her anxious and everything she perceives to be likely to make her anxious. 

When she started school H did not have SM but she was massively anxious and was demand avoidant.

At preschool she never managed a whole day because it was too much for her but when school started she suddenly had no choice.

She screamed, kicked, ran away, begged, sobbed and clung onto us in an attempt to stop us from making her go. Unfortunately we didn't listen to her, she was we believe told to put up and shut up by school staff so she did.

I am not sure that H ever initiated a conversation with an adult in school ever and she certainly didn't ever ask for help.

When H is anxious she freezes, she makes it her mission in life to be invisible away from home and yet that is not her true personality. At home and with a  small group of very familiar and chosen people she is loud, funny and very outgoing.

The person that most outsiders see is not the real H, it is the H in self preservation mode. All demands are difficult and speaking is one of the most challenging.

Rachel Tenacious 

[A little bit about me, I am a late diagnosed autistic parent with three children aged between 30 and 16. H is my youngest child she was diagnosed with autism at age 9 and selective mutism at 15.

We removed H from the education system in 2015 after she had what we now know as an autistic burn-out.

The school system didn’t suit H at all but home ed has been amazing.

Since my diagnosis I have begun to share some of our experiences at support groups and am hoping to expand this out to schools, colleges and anywhere people want to hear me really.]

Assessing the SLCN of a child with PDA

When I did the PDA webinar for the PDA Society recently (to listen click here), a SLT asked me for tips for assessing a  child with PDA. I said that they usually weren't too bad for initial assessment as children with PDA often enjoy being centre of attention and novel situations. It is often much  worse when trying to engage with  therapy. I usually use a dog in the sessions so he makes life easier.

However, I was reminded at the weekend, that this is not always the case and that we need tips and strategies to get us though these potentially trickier situations.

Just remind ourselves of the main features of PDA:

·         obsessively resisting ordinary demands
·         appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on)
·         excessive mood swings, often switching suddenly
·         comfortable (sometimes to an extreme extent) in role play and pretending
·         language delay, seemingly as a result of passivity, but often with a good degree of 'catch-up'
·         obsessive behaviour, often focused on people rather than things.

We need to assess them to get an accurate picture of strengths, be able to give strategies for family and staff and to be able to devise a programme of work to address their issues and  to maximise their potential. Obviously,  the 2 areas we are concerned with are language processing and social communication.

We need to be aware that they do not like people to know they are struggling so they may

pretend/hide/disguise, distract or get angry..... or all 3.

1. Pretend, hide, disguise:

This is  a key factor in PDA. A parent may ask them to do something very simple such as turn off the TV but they will have a wide range of reasons why they can't e.g. my legs don't work, I can't find the remote, I can't reach the remote, I'm too tired etc. This can escalate if pushed. You may find similar issues when trying to assess. They might say, 'I'm not doing your stupid tests and you cant make me' or 'you're only being nice to me so I'll work with you and I'm not falling for it.' That is true, so we need things in our tool box to ensure we can get a full picture of SLCN.

2. Distract verbally or physically:

Many of the children with PDA I have worked with, have either tried to shock or frighten me. I have lost count of the times I've been asked 'the worse thing they can think of' (Boringly similar with tween/teenage boys) and even had one boy who said 'you can't go yet because you haven't had sex with my dad.' The key is to be very nonchalant and either ignore or pretend you hear that everyday: 'Ah, No thanks, I'm a bit busy'.

One poor 10 year old lad who had been in a secure unit for 3 months, enjoyed scaring visitors by poking their eyes. This was also because he had a deep sensory-seeking need which wasn't being addressed and he got what he needed from firstly the fear of the visitor but then the 2 burly male nurses bundling him to the floor as he manically laughed in their faces. Of course they thought he was some possessed devil child and didn't see him as the frighted,very anxious boy he really is.

3. Get angry with themselves or others:

The anger may come out of the blue and may not be seen coming. They may look perfectly happy, even relaxed but remember they have cultivated hiding their difficulties. The anger may take the form of them hurting themselves such as banging their heads on the table or may be at you or your things.

So what can we do:

1. Realise that it is anxiety based and keep calm. Never take it personally, never be offended. Ignore wherever possible. I have 3 rules: no hurting themselves, no hurting me and no damaging property. Other then that, I go with the flow.

2. Use all the strategies you would for making language simple that we preach to others. 

2. Give choices e.g. of which room to use, which order for the activities, which assessments even. This will help them feel in control. You may find a schedule of the session useful; picture photos or the written words.

3. Scale back demands by some of these strategies based on the 'Positive PDA' booklet:

Using indirect language

e.g instead of saying we're going to say “I wonder if we can...”

 “Shall we see if we can beat the clock...” ,“Maybe we could investigate…”

This means avoiding direct language such as“It’s time for you to...” ,“You’ve  got to...”, “You  need to...”

Allow take up time 

Plant the seed of what you would like to happen at the start of the session, but don’t expect it to happen straight away. 

Use the child’s interests

                                        

Using characters of interest can help de-personalise demands, as you are not personally asking them to do something. For example, if the child loves Peppa pig, get Mummy Pig to make the requests. Older ones may like a Starwars character or even the queen who  makes the  rules, so it isn't your rules. 

              

Use humour. 

If you feel the tension rising, humour is a fantastic distraction. You could try making jokes, using physical humour (exaggerated facial expressions, or silly walks), being silly or feigning ignorance.

   

Use distraction

Distraction can be a handy way to temporarily press ‘pause’ and ease the child’s anxiety.

Add other activities into the mix 

e.g. bubbles, popping balloons or blowing up and letting go, a feelie bag of sensory materials. 'If we just finish this, we will be able to do .....'.

The main thing to remember, especially as you feel exhausted at the end, is that this is for  a short time. Their parents live with this all the time! 

So good luck! Let me know how you get on.