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.]

About masking autism and why I think we should think past it

Guest blog post by Rachel Tenacious

This morning as often happens I saw a poster/meme about masking and what do we know about it. People are so much more knowledgeable about this part of many people's autism but yet we don’t seem to be moving forward in solving the problems caused by it.

These are just my thoughts as an autistic person who "masks" and the parent of an autistic person who "masks".

The thing is I don’t actually believe H does mask, I can see the struggles, the stress, the anxiety but often others can't, won't, don't!

I think we need to move beyond thinking about masking as a thing and look at the way we view the person we are thinking about:

Does the person have a diagnosis of autism?

What do we know about them?

Have we been told what signs of stress to look out for?

If the answer to my first question is yes then I want you to stop thinking about that person in terms of masking and start thinking about what you can do to support them.

My point is that all people with autism need support in school, at work etc whether they mask or not and by saying we can’t help them because they are masking is the same as blaming them for not asking for help.

I have a perfect although hopefully extreme example of where schools can make a critical error in terms of supporting a child with autism. My child's school didn’t support our appeal for her to be statemented in fact they were adamant that she was "fine" in school and to prove their point they made a video of H doing drama!

The video showed H rocking from foot to foot while standing in a circle of other children, twisting her hands, licking her lips and rubbing her face with the sleeve of her jumper [something which had caused her to draw blood in the past, you wouldn't believe the harm that can be done by acrylic, luckily we were able to buy 100% cotton jumpers for this school]. Yet H was taking part in in the lesson and was engaged. Apparently that was enough for the school. It wasn’t for us and thankfully not for the tribunal either who didn't view the video on the day of the hearing but had clearly watched it and had also noted the clear evidence of anxiety.

Sharing and understanding information about what anxiety looks like in each individual with autism or suspected autism is massively important. So many of our children are being failed by the system, the stats for the number of autistic people out of school or work make very depressing reading and yet with some simple skills eg listening and looking carefully there could be a way forward.

I have seen evidence that this is possible, H after three years of home ed to recover from the trauma suffered in school has tentatively dipped a toe into the world of college. She is doing eight hours a week and has a 1:1 LSA. This LSA has already shown after seven sessions that she is intuitive enough to spot the signs of stress in H. Yes it was subtle, shuffling around in her chair, sighing, pulling at her t shirt but it was noticed. The LSA was uncertain what action to take but that doesn’t matter at this time, its very early days and no one knows what action to take really. The fact is that by coming and telling me at the end of the session that there had been a noticeable difference in body language I was able to get some more detail later on on the evening and can begin to help to solve the problem [which turned out to be a noisy fan on a laptop that was preventing H from being invisible and which she has become hyper focussed on.] In the old days that would have been missed and H would have quite likely school refused the next day but here we are well on the way to fixing the fan and at any rate talking about other options.

It is so important to me that we stop almost blaming these children, young people and adults for not letting us see how much they are struggling. They do this because they want to fit in, they want to do well and its hard work. We need to give them permission to receive help, we need to help them to understand that being helped is a positive thing and that they don’t need to hide their autism anymore.

 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.]