Background

As background, H had been described as being “Unable to talk when they are anxious” by an Educational psychologist when they were 11. I went further when they were 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 their difficulties when I described  H to them. Sophie Harding and Libby Hill from Small Talk agreed that H does have SM when they were 14.

Demand Avoidance & Low Arousal

I had begun to learn about demand avoidance and low arousal before I had heard the term selective mutism. 

We had begun to see that by living a low arousal lifestyle suddenly “demand avoidance” was not such a big issue for us.

H avoids everything that makes them anxious and everything they perceive to be likely to make them anxious.

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

At preschool they never managed a whole day because it was too much but when school started suddenly there was no choice

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

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

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

The Real ‘H’

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.

H does have identified communication difficulties, difficulties with processing and word finding. These difficulties cause anxiety in their own right so naturally situations where communication is complex or overwhelming are on the list of avoided situations.

Stress and Demand Avoidance

I am absolutely convinced that H’s SM is related to stress and demand avoidance. I think that the most important thing we have learned is that none of the difficulties are due to a conscious choice, they are all stress/anxiety based and all of that stress/anxiety is caused by a lack of support in school settings, misunderstanding of autism, the way H processes the world and their perception of when they need to be anxious.

What we have to remember is that almost every adult [outside immediate family] who has ever had “responsibility” for meeting H’s needs has let them down.

The people we asked H to trust, failed them, time and time again.

Now when we ask them to trust people, they is extremely wary and who can blame them?

How Far Have We Come?

We have come so far since I originally wrote this and SM is rarely something I think about day to day now.

H is accepted within our circle of trusted people and if there are days when H speaks away from home then we know we were with safe people in safe places. I don’t even think I really notice the days when H doesn’t speak now because its not as issue for us.

With the support from a tiny number of very special people we have moved beyond trying to find ways to help H speak and into ways of discovering how H can get their needs met in other ways.

Covid helped us in some ways because everything went online. There are still a few things that need sorting eg benefits and medical stuff but generally the with a bit of creativity the world is definitely more accessible than it ways when you cant find the words you need or stress/anxiety stops you from being verbal.

The Author – 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.