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.
[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.]