A story about the consequences of autistic masking
This was a comment made to me by Jessica, the mother of a year 7 girl , who was really
concerned about her daughter.
Annemarie, like so many of our learners, had not been picked up when she was observed in
primary school by one of the local neurodevelopmental ( ND) team. This was because, on
the day of the observation, she ‘appeared happy and relaxed in school and behaved in a
socially appropriate way for her age.’ Yet at home Annemarie would regularly lock herself in
the cupboard under the stairs after school. Sometimes, she would even meltdown and trash
her bedroom or throw things at her family members. This was extremely distressing for the
family as a whole and they had looked for explanations for their daughter’s dysregulation.
Jessica was convinced her daughter was autistic. There were 2 good reasons for her belief.
Firstly, because her husband, Jeremy, an IT engineer, had recently been diagnosed, so there
was a known family history. Secondly because Annemarie had had speech delay and
significant sensory needs ever since she was a baby.
After the observation at school, the ND team had decided to sign Annemarie off, but after
much persuading, Jessica had convinced them to gather more information from a specialist
teacher, which is where I came in.
I asked Jessica to describe the differences between the reports from school about
Annemarie’s presentation and how she was presenting at home. Which is when she told me
about the shoes.
“I can always tell when Annemarie has had a bad day. I watch her walk up towards the
house and she moves differently. It’s like her shoes don’t fit.”
This subtle difference was a clue that Annemarie was having a hard time. Jessica explained
that Annemarie had always hated wearing shoes. As a small infant, she would always find
ways to take them off and hide then all over the house. When she had first started nursery,
Jessica had made a concerted effort to find acceptable shoes, eventually settling on
wellington boots that were a size too big. When Annemarie went to the local primary
school, they had insisted on ‘indoor shoes in the classroom’. After been told by her
reception teacher that she needed to ‘dress like all the other girls’, Annemarie had learnt to
wear shoes for school, but took them off immediately when she got home.
On a good day, Annemarie had learnt to either live with, or ignore, the extreme sensory
discomfort of wearing ‘indoor shoes’ to ‘dress like all the other girls’. She could do this all
the way to her front door. But once she was home, the shoes sat on the shelf in the porch
until the next day. On a bad day however, the closer Annemarie got to home, the more
difficult it got to maintain the mask. Which is when her gait would change, she would begin
to walk in this unusual manner. This was her way of showing that she was fatigued and
ready to burn out, after a stressful day of masking.
What is masking?
Masking is sometimes called ‘ social camouflaging’ or the ‘veneer of sociability’. This is
where an autistic or neurodivergent child ‘acts neurotypically’ As I explain more in this
video.
https://www.youtube.com/watch?v=pC81LnqBrQI&t=30s
In Annemarie’s case, she was so good at putting on her social coat ( or in her case, shoes)
that the neurodiversity team had not picked up on her subtle tell.
Getting school onside
Annemarie went to a large comprehensive school with a good pastoral care team, who were quite concerned about her behaviour at home. Like so many autistic people who mask, she seemed ‘fine in school’. Her behaviour was excellent. She worked hard and seemed
enthusiastic about learning, and she had even taken part in the school play. On the face of it, when she first transitioned to the school, she seemed social like ‘All the other girls “.
I suggested the SENCO asked staff to respond to 3 questions about Annemarie;
1. What was her understanding of sarcasm, word play, and sayings?
2. Had they noticed any sensory difference, especially in practical subject?
3. What was her relationship with peers like?
The results were quite telling. Annemarie’s English teacher said she was ‘very literal’ and
found explaining texts, especially poetry, difficult as she had no understanding of the
meaning metaphors or similes, even though she could define, and recognise both.
The PE teacher had noticed that Annemarie ‘appeared clumsier in her trainers. Like she has
to take a few minutes to get used to wearing different shoes.’ Whilst the DT teacher
reported that she hummed in a loud monotonous tone ‘as if to drown out the noise of the
tools.’
Finally, her science teacher, who was also Annemarie’s form tutor explained how she was
‘so desperate for friends that sometimes she pushes the other children away.’ She told the
story of how another girl had come into school upset because Annemarie had texted her 23 times in an hour to check if they were still friends after a minor tiff.
Although none of these pieces of the picture, in and of themselves gave a clear indication
that Annemarie should continue on the diagnostic pathway, together they were very useful
in gathering evidence to show that the SENCO was correct in putting in for other referrals.
It took another year for Annemarie to get her autism diagnosis. Luckily her school started to
put several things in place which helped her to occasionally, put down her heavy mask and
be her authentic self in school. These included;
1. Uniform adjustments – Annemarie was allowed to wear boots to school and did not
have to change her shoes for PE if she was having a difficult day. She still wanted to
‘dress like the other girls’ but began to recognise if she felt dysregulated
2. A full sensory assessment and sensory diet – As I’ve said before, the input of an
occupational therapist can be invaluable, but you can also do a sensory screener and
use that to create a sensory diet. For more information see my blog
https://www.neuroteachers.com/post/but-he-just-can-t-concentrate-ben-and-the-
dust
3. Information about her own diagnosis (when it arrived) -Annemarie was very much
part of the diagnostic process. Her father had explained why he’d sort his autism
diagnosis and the family were open about neurodiversity and what it meant for
them. The school also encouraged her to get to know 2 older girls who had been
recently diagnosed and were happy to talk to Annemarie about their experiences.
4. Joining a club around her special interests– Annemarie loved animals and the
outdoors. Her form tutor, who was also a science teacher formed an ‘invitation only’
ecology club, in the school wildlife area.
5. Support from the pastoral team about forming friendships with other
neurodivergent children The team felt that this was important because Annemarie
needed to know that she wasn’t the only one who found the sensory and social
communication aspects of school difficult. She now has peers with similar needs to
her as well as NT children.
A link to a webinar about masking here masking webinar
For more information or training about masking and social communication for autistic
learners, please contact Catrina Lowri https://www.neuroteachers.com/contact