Selective mutism in autistic children

Selective mutism is an anxiety disorder, but it is also a symptom of autism. Both give a similar image, but for completely different reasons. Which means they also need different treatments. I have been selectively mute myself for a long time and I feel called to give some more information about this an experienced expert.

At the time I was young, not everything was diagnosed yet and autism in girls wasn’t recognized. I was seen as a shy child. My teachers in kindergarten never heard my voice, I never said a word. Only in primary school I started making some sounds, I would answer questions, but only in the shortest possible way. I can remember that I really wanted to learn and eagerly put my hand up to be able to give the answer to a question, but in social situations I still wouldn’t say a word. Almost like the classes in primary school were a waste of my time. On family reunions, it took a lot longer before I started to speak. And at home? At home I would join in conversations, but only if I took any interest or (and also) if I started a conversation myself or would choose the subject myself.

Selective mutism as an anxiety disorder needs a treatment on the lowering of fear and the increasing of I-strength. An I-strength that by the way goes hand in hand with trust in social situations. Trust is quite high on the ladder in the emotional category of fear. For instance, ‘panic’ is at the bottom of this ladder and you definitely want to prevent this. When panicked, there is no ‘I’ present to take yourself back and the child will need someone from the outside to make it feel safe again. Please watch out when treating fear, not to ask something that still might be too much!

This will take away some steps of the ladder and will cause more harm than good. Your goal with selective mutism or any anxiety disorder is to get higher up on the ladder of the emotional category of fear. Even higher up than trust, there is alertness for fearful thoughts and taking responsibility for yourself.

Selective mutism as a symptom of autism is something different however. Let’s look back to my time in primary school. There was no fear about speaking out or because of low self-esteem. There was fear, because I just didn’t know what to say if someone else would want to interact with me. It was about misunderstanding the social game, I just didn’t know how to do that. Next to that, I was completely oblivious to what was expected of me, I was completely occupied by processing all those intense new experiences and impulses. Having to interact socially in that moment as well would just have been too much. Language as a social connection tool is very different from language as factual information carrier. The latter I understood and I could use language in that way. But speaking as a tool for social interaction was very scary. I knew that I wasn’t capable of doing that. So I just needed to look and listen, in my own time… for years on end.

I often thought about Princess Irene, who once said ‘I turned deaf only to able to hear…” I became mute to be able to understand human interaction. It became my biggest passion and my expertise. If I would have had to learn to speak before I was ready to do that, it would have taken away my unconsciously chosen way of learning. And because the focus would have been on ‘me’ in that case, this would have even caused more confusion. Because autistic people don’t have a point of reference of ‘I’. I first had to understand the outside world before I could start to observe my own brain (also with a certain distance). I needed a reference point, but it had to be one that was logical in my autistic eyes… and I couldn’t find it just yet. Everything I saw in this period in primary school, seemed illogical and didn’t make sense: ‘What on earth am I doing here?’ However, I was prepared and even eager to find some logic. I’m no different from other autistic people here; we all want clarity (read: logic). But if I hadn’t been interested in human characteristics but for instance in architecture, I might not have started to communicate at all. 

A part of the treatment of selective mutism could be to show the advantage of, in my case, social communication and showing that this is bigger than the disadvantage. If I think back to my period in primary school, I just didn’t see the use of talking to other children. Only when it became the means to learn, in higher grades, to take information in and to give it back, did using language became interesting for me.

What I also would have needed was an ally. Someone that would have just sat down next to me as an equal. Looking together at the swarming crowd and said: ‘Isn’t that just goofy?’ It has frustrated me for a long time that this weird crowd was seen as something normal and that I was abnormal. It would be such a relief for so many autistic children to be acknowledged in their ‘normality’ and the absurdity of society. Then you have an entrance. The most destructive thing you can do as a therapist is to treat someone with autism as someone with a lack or a problem… Just this intention will already make the other feel insufficient and awkward. The most effective foundation you can create as a social worker towards a client (and this is true for every client), is an approach from equality and a focus on what is beautiful, special and positive about the client with acknowledgement of the point of view of this person!

You also need to understand that selective mutism isn’t a prison for an autistic person, but a safe zone. For me, talking was just too complicated. It took too much effort. And I truly enjoyed observing the world from silence… You see, hear, smell, feel and taste so much more without words. In my view, talking is often misused. I never saw it as a problem in being wordless. Until(!) the outside world started to expect me to talk and thought I was strange. And when I noticed that they connected amongst each other through language and that I was being overlooked, just because I communicated in a different way. With a stress on ‘different’, because I certainly communicated. I would communicate to people like animals communicate, non-verbally… logically on an energetic level. But often they wouldn’t understand me, I was too subtle.

People with autism view the world from a different perspective, so to say: from a feeling awareness with a focus on detailed facts based on natural law (in whatever area of interest) and without reference point of ‘I’. This is very different from the most neurotypical people, who view the world from a physical/mental perspective with the focus on social interaction to consolidate the ‘I’.

Back to selective mutism in autism ;-) The big issue for people with autism is the lack of clarity on socially acceptable rules. The logic of the who, what, where, when and how often doesn’t really make sense and has to be spelled out for us so that we can store it. And because they often don’t make sense they seem to be different in each situation. A big part of the treatment of selective mutism in children with autism is about making the social world understandable and to practise this. To understand the logic of neurotypical people… It’s paradoxical that that was exactly what I was trying to do in my silence… Look, look, look and trying to figure it out. What is it that they are doing and why are they saying what they say?

Those questions actually turned into the development of a method for conversation that hundreds of people followed trainings for with me. Managers and doctors told me that their conversation skills improved enormously and were even asked by their colleagues what their secret was. So what made an autistic child with selective mutism develop into someone who was able to speak to large audiences about human interaction?

Let’s sum up what it’s about for a constructive treatment of selective mutism in autism. What would have helped me when I was a child? Let’s start with the question whether we should treat the mutism at all. In my opinion it’s a pointer towards something else that is in need of attention. Because we want to avoid to fix something that isn’t a problem at all for the person in question. So let’s first ask or observe whether(!) and where the problem is, which is most likely the lack of clarity in social communication. What does this need?

  1. Acknowledgement of the autistic point of view
  2. Create motivation: what is the point of social communication?
  3. Education: It is very important to keep stressing points 1 and 2 in this. Then: which are the rules of social communication and which tricks can you use? And/or(!) maybe you can think of something even better? Because yes, sometimes these rules are so childish or illogical that an autistic person comes with a much better solution J. Look together for a middle way in which the person with ASS feels good. For instance: one of the issues that took me years to figure ou, was whether I should call my grandfather ‘you’ of ‘You’ (in Dutch there are two different words for the polite form and the more intimate form). ‘You’ was the social rule towards people that are older than you, but he felt more like ‘you’ in the intimate form…. The effect was that because of this lack of clarity I literally never dared to talk to him and never had a single conversation with him until he died when I was aged 11. Because for someone with autism, things come very precise. You can’t call someone that feels like ‘you’, ‘You’. That rule can cause an inner conflict, so you just can’t do it! Those rules get stuck in your autistic head though and can be very inhibiting. Every rule that knows exceptions is inhibiting, which is why it’s important to come to rules about communication together that are logical according to the law of nature.
  4. Practice: Acquiring trust (or prove) that it will work in real-life situations by 1 on 1 role play or, if that is a bridge too far, playing it out with dolls for example to encourage courage.
  5. Extending: A follow-up in which step 3 and 4 are extended and deepened.

Next to that I keep on wanting to stress how important it is to ask the person in question, also when it’s a child, what it is that he/she would like to learn. And not, what he/she has a problem with! Or what you think that they should learn. It is so important to stress the qualities and to accept weaknesses. With this attitude, it is much easier to overcome your weaknesses with your qualities.

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"It has been my lifelong fascination to investigate why people say what they say and do what they do ... because it seemed so illogical"

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