“I put the lid on and press it down till it clicks” - Masking and Autism

"I put the lid on and press it down till it clicks"This wasn't a description of closing a holiday suitcase or the lid on the biscuit tin - these were the words of an autistic young person describing how they held in their feelings of anxiety and stress and overwhelm at school. The phenomenon of masking/ social camouflaging is described by Hull et al (2017) in the paper 'Putting on my best Normal' as follows:

"These strategies may include hiding behaviours associated with their ASC, using explicit techniques to appear socially competent, and finding ways to prevent others from seeing their social difficulties."

I also frequently see this for young people who may have other difficulties beneath the surface, such as with processing what they are hearing, or auditory memory amongst other things. This is particularly the case for girls with autism. For many young people there is a distinct difference between how they are at home and at school. The classic picture of a child who 'seems' to manage well at school, but who becomes inconsolable or explodes when they leave the school gate is what I hear from parents day after day after day. Sadly this is still not widely recognised or understood, leaving parents feeling judged and blamed, young people distressed, and families struggling to cope. As Hull et al note:

"Camouflaging in certain settings may lead to the perception that individuals function well and do not experience any problems, even though those individuals still experience difficulties as a result of the interaction of their ASC and the context."

I learn so much from the young people I work with and as part of any autism diagnostic assessment process I always spend time with the young person finding out about how they experience the world. With one young person, as I am so aware of the discrepancy between how they are at home and school, we explored this more. We got out our pens and paper and explored together the things that filled up their stress bucket - drawing the bucket and what level it filled to at different times of the day. When we got to talking about the end of the school day, the young person drew the level much higher than the bucket. I asked how they kept all that difficult stuff inside when they were in school and that's when they described pushing on that lid till it clicks. What we know now from research such as that by Hull et al, is that there is a huge cost to the individual- young or old - from masking/camouflaging.

"In the short term, camouflaging results in extreme exhaustion and anxiety; although the aims of camouflaging are often achieved, in the long-term there are also severe negative consequences affecting individuals’ mental health, self-perception, and access to support".

This piece of research marries up perfectly with what I see in my own clinical practice. The cost of masking can be so very great - and in some young people masking itself can prove a barrier to accessing assessment at all. I have started using this visual (tailored to the young person) when I write my assessment reports to try to illustrate the masking and the cost and to make sense of the different profiles across home and school. This is a message that families and professionals need to hear. Masking and "keeping the lid on" IS a genuine thing. Once we learn to look beneath the surface then we can start to truly understand - and truly support.

Reference: Putting on my best Normal: Social Camouflaging in Adults with Autism Spectrum Conditions J Autism Dev Disord. 2017; 47(8): 2519–2534.#autism #asd #masking #speechandlanguagetherapy

Jude Philip is a specialist Speech and Language Therapist and is passionate about unlocking potential in those she supports. Autism is one of her specialist areas and together with a multidisciplinary team she carries out diagnostic assessments from the Grow Communication clinic in central Scotland.