Children’s hidden distress
Trigger warning- brief mention of suicide and trauma.
I have recently submitted a 5000 word assignment on this subject (available in another post), so I will be attempting to avoid going in quite so deep and stick to the main points…not an easy task when I feel so passionately about this topic!
I know there will be many parents that will read this and learn nothing new, for many children and their families this is their everyday lived experience, feeling misunderstood, trapped, unsupported, isolated and often with the all too common implications of anxiety and mental ill health.
Masking, also known as social camouflaging is the ‘performance’ put on by an autistic person in order to ‘fit in’ with surrounding people often by supressing autistic tendencies or hiding the difficulties they experience in the non-autistic world.
So how can this look?
A person who; is suppressing excited jumpy flappy movements, doesn’t voice the distress caused by the lights being too bright, mimics the fashion, speech and interests of a peer or continues a conversation about football despite being bored senseless! It can look like a child who appears calm and happy all day at school, but the minute they meet the safety of Mum or Dad ‘lift the lid’ of their emotions and spirals into a meltdown, it can be the child who has numerous meltdowns in the morning over socks feeling wrong or hair having too many bumps in it, yet the second they cross through the school gates appears to ‘click into character’ of being ‘fine’ and has that façade on again all day.
Now I’m sure many non-autistics reading this may well think ‘well that’s not so unusual, we all do that from time to time’ and yes that’s absolutely correct. But for the autistic person the extent of masking is deeper and more labour intensive than that of the non-autistic. It involves intense focus and holding back what is natural, overriding ALL of one’s true self.
It has been extensively reported that masking hinders identification of autism ( Russo, 2018), is a barrier to accessing support and the mental effort involved in masking causes high levels of stress and exhaustion, autistic burn out and mental health difficulties (Hull, et al., 2017; Cage, Monaco & Newell, 2018).
I will now consider the impacts in more depth.
Masking hinders access to identification
Masking can hinder the very first step in gaining identification (Eaton, 2016), with referrals to assessment pathways requiring ‘evidence’ from more than one setting (NAS, 2016). Therefore many children are unable to access recognition of their autism until their stress levels become so high they are no longer able to mask or suppress their difficulties and differences. By this point children will have had very negative experiences of education and very often will be struggling with mental health difficulties, low self-esteem and possibly trauma. Early access to assessment and formal identification is vital in preventing mental health difficulties.
Zwanenburg (nd. Para.6) summarises the importance of childhood identification;
‘As without a diagnosis this can make so many areas of life difficult, distressing and bewildering for the undiagnosed person. This can result in difficult behaviours, social isolation and young people who do not attain their best ability in school. Once diagnosed, the young person can understand themselves better and realise that are not alone in the way they feel. Their parents and the professionals working with them can all learn how best to help them. The right services can be accessed and adaptations can be put into place in the educational setting. A diagnosis can prevent so much distress as the child develops and can stop further psychiatric illnesses developing’
Furthermore without identification parents are often requested to do parenting courses which often involve being more assertive and consistent with boundaries. Parenting an autistic child in this manor can cause all sorts of trauma and distress.
When identification comes at a point where a child is rock bottom in terms of mental, they can misinterpret symptoms of a secondary mental health condition as autism. This results in many children rejecting their autistic identity and/or despising it. Heppel (2019, pp21) who was identified late in life, described this as ‘I have to separate the autism itself from the wounds that have been inflicted by people over the years- some well-meaning, some not – in response to the way my autism expresses itself’. Positive autistic self-identity supports good mental health, (Cooper, Smith & Russell 2017).
Masking hinders adjustments and support in education
This occurs on two levels, the first is for a non-identified child. It’s easy to assume that if a child is ‘fine’ in school and therefore school have no concerns then a parent may not even consider asking or expecting school for support. The other level is that even if a child is identified of even if a parents is begging school for support, when a child appears a delight in the classroom then why on earth would school offer any adjustments (unless of course they have a very good understanding of masking in autism and I have met some amazing SENCo’s that do) but for the majority it’s still an alien term or one at least that isn’t understood to the extent that it can occur. Dr Luke Beardon quotes). Beardon (2014, para.2) writes ‘just because a child has the ability to mask their autism at school does not mean that they are not greatly impacted by their autism on a daily basis’.
Masking is misunderstood
Parent ‘blaming’ is often experienced by those whose children mask (Eaton, 2016. This can be anything from parents being deemed overly-anxious and being seen as the cause of a child’s anxiety to parents been viewed as being desperate to ‘label’ their child. Fabricating or induced illness (FII) is a form of child abuse and one that parents of autistic children are known to be accused of (McNicholas, Slonims, & Cass 2000), particularly at risk are autistic parents (including those not identified as autistic). Autistic parents are more likely to have researched extensively, to the point where they can be more knowledgeable than a clinician. According to the NHS a child is more at risk of FII if the mother has borderline personality disorder, which a common misdiagnosis associated with autism (Pilling, Baron-Cohen, Megnin-Viggars, Lee, Taylor, 2012). The NICE Guidelines (Child maltreatment: when to suspect maltreatment in under 19’s, 1.2.12) states presentations that may indicate FII, some of which raise concerns if we consider autistic masking, such as ‘symptoms and signs only appear when the parent is present’, ‘reported symptoms are only observed by the parent’, and the National Health Service (2019) suggest considering FII when ‘the parent has good medical knowledge’. All of these could be attributed to a child that masks. Within these guidelines (child maltreatment: when to suspect maltreatment in under 19’s, 1.2.12) autism or masking is not acknowledged as a possible explanation for the presentation. Furthermore these guidelines appear to mirror ‘alerting signs’ for FII proposed by Bass and Glasser (1994) and more recently Glaser and Davis (2019). These signs have been heavily criticised by Gullon-Scott (2020) as discriminating against autistic children and autistic parents as these groups would likely present with some of the ‘signs’ without it being FII. Gullon-Scott (2020) states that ‘families who have been investigated, erroneously for FII, report extremely high levels of trauma,
A further misinterpretation of masking, in my experience, is to be deemed ‘manipulative’. Implying that the discrepancies in behaviours between settings and between care givers is down to a child trying to ‘get their own way’. This can lead to the mistreatment of a child. I have experienced those who disbelieve parents’ concerns and resent any ‘special’ treatment a child maybe receiving. I reframe ‘manipulation’ as a child ensuring their needs are met to prevent trauma. Poe (2019) writes about a teacher who deemed her manipulative. During her time in secondary school Poe was emotionally abused by this adult to a horrific level due to the teacher’s incorrect beliefs about Poe’s presentation. Professionals having a greater depth of knowledge of masking would increase understanding and encourage a more open dialogue between parents and professionals.
Masking leads to Burnout
Long term masking and surviving with unmet needs leads to autistic burnout. Burnout is a not a widely recognised aspect of the autistic experience, particularly with regards to children, however it needs to be. Burnout is when a person is depleted of any mental or physical energy to function. It is often mistaken for depression or severe anxiety disorder. (If you want to read more on burnout I highly recommend Kieran Rose’s, The Autism Advocate webpage and blogs. Inappropriate ‘treatments’ or approaches are then put in place which often cause further distress and withdrawal. I have seen, too many times, the impact of CBT style approaches on a child who simply needs to be given the time to recharge and for the environment that has caused such levels of masking and burnout to be adapted to meet the child’s needs. Simply ‘encouraging’ or even worse insisting on a child returning to ‘normal’ at a time of burnout is incredibly traumatising and if the environment itself is unsuitable and/or without adjustments it is quite frankly abusive.
So what need to change???
All professionals working with children need to be aware of autistic masking and the severe impact it has on lives.
The Sunflower lanyard has been helpful on our journey, my daughter uses hers and feels that when wearing it people don’t judge her negatively for her differences. She feels it offers her a green card to act herself. Autistic behaviours needs to be understood and accepted, the responsibility lies with every adult. Educate your children, educate yourself!
Our children need to be allowed to say ‘no’ without the fear of punishment or ridicule. How often when a child doesn’t want to kiss grandma or share with a friend do we insist or persecute them for going against others wishes. How can our children learn the essential self-care needed to manage being autistic in a non-autistic world if we don’t teach them to say ‘no’ when it all feels too much! As an adult people often preach ‘self-care’ to me, I don’t even what my own self-care looks like! We have to advocate and teach our children this through validating and accepting when they express themselves.
Behaviour policies in schools go against self-advocacy. Many children I have met have a deep fear or phobia of being singled out or told off in school, therefore they will stick to the rules even if this is to their own detriment. Just recently I read a school policy that insisted children showed ‘good listening behaviour’ this involved sitting still, looking at the teacher and hands on laps! I work with many incredibly bright and able children, yet if they are required to follow through with these 3 demands they have little mental energy left to actually process what is being said to them, yet they are too scared to act out their natural neurology of fiddling and looking away from people while concentrating as this will result in being seen to ‘break the rules’ or being ‘naughty’ with terrifying implications i.e. being told off.
All children should be taught specifically about difference. Diversity makes up the amazingly rich tapestry of life and of humans. No child should feel less for who they are, no child should be denied identification and expression of their true self.
A bit about the me!
I am an independent practitioner based in Wiltshire. I support families on their autism journey from assessment, identification, advocating for school adjustments, advising on parenting approaches and supporting the emotional literacy of children.
Jodie is a parent to 3 children, 2 goats, 6 hens, a gecko and a dog. Jodie is a advocate for the therapeutic value animals have for autistic children.
Jodie Smitten 
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