How we use low arousal techniques to support a person with autism and Selective Mutism

Guest post by Rachel Tenacious

Low arousal can be used with any person who is having difficulties meeting the expectations of those around them as far as I am concerned but it works especially well with people who need to be in control of their life as much as possible as a way to keep their anxiety at a manageable level. Demand avoidance is a reaction to fear, facing scary situations all day every day is too much for any person, when a person is demand-avoidant it is their way of stopping the world just for a short time so they can breathe.

Our lives are full of demands but many of them can be avoided with a bit of skill and determination. When H was 5 we were told she was controlling us and we have been told this many times over the last 11 years and guess what, yes she is and yes she does but not for the reasons that most of  the so called "professionals" were suggesting. H controls her world because it is very scary. Speaking away from home became scary for H sometime after she started school and this was when she stopped doing it. We believe that she tried asking for help by crying at school but her voice was invalidated so she stopped asking.

Removing H from school allowed us to give her a break from the massively demand heavy environment that she was in every day. Learning about low arousal has helped us to give H a voice and to allow her to live a life of much lower anxiety levels.

The first and most important thing to remember is something first written by Ross Greene who wrote "The explosive child" he said "Kids do well if they can". This is the root of everything!

Before we can genuinely improve that lives of people like H we have to properly understand that. We have to remove blame, we have to believe that the person who is struggling is not making a choice, we have to have a good understanding of Fight, Flight, Freeze and most of all we have to think outside the box.

Living a low arousal lifestyle is completely different from anything else we have ever known, we have to throw away the "Traditional parent, parenting handbook" and we have to get creative. We have developed our own toolbox of strategies and techniques for getting through each day. We are led by H, we never punish, we never cajole, coerce or bribe her. If she needs us to speak for her we do, if she feels able to speak for herself we celebrate [secretly].

We have days with massive successes where she is able to order food or buy a drink verbally. We have lots of days when she can’t do those things but we step in and make sure she doesn’t miss out. We build in loads of downtime and never make direct demands about anything including speech.

We would never expect her to use social greetings but she will occasionally look at people to acknowledge them and sometimes say a quick “Hi” and we always say a general thanks, goodbye etc.

Because initiating a conversation is a massive demand for H and maybe something she never does away from home we sometimes give people information about things that she is interested in. If she is comfortable and talking about a subject she is interested in she can talk freely. And if she isn’t comfortable she can at least answer questions or nod.

We are actually ok with SM and the actually act of speaking has become a less important aim for us. We would like to get H to a place where she is able to be more independent and I think  we are already moving in that direction but whether speaking away from home will be a big part of that I don’t know.

H wants to learn to drive next year so that she doesn’t have to use public transport which is a sign she is  thinking about her future. Finding an autism/SM friendly driving instructor might be a challenge but we are used to challenge.

There is lots of info about low arousal strategies available, we particularly like Bo Hejlskov Elven because he is clear and concise and his book "Sulky, Rowdy, Rude" is easy to read. "The Explosive Child" by Ross Greene is also an amazing book but I found it a little harder to read.

I guess for me the whole basis of low arousal is making life more positive, working together to find out how we can help to overcome the anxiety that causes the challenges and respecting that actually its ok to avoid some situations, we need to look deep into ourselves and think about the things we avoid as adults that we were forced to do as a child and extend that out into our children and into our whole lives.

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.

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.]