‘It’s like her shoes don’t fit.’ 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.

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

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 to form 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.

For more information or training about masking and social communication for autistic learners, please contact Catrina Lowri

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