Guest blog by Jodie Smitten
As a Post Grad student I have recently submitted a 5000 word
assignment on this subject, 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, and isolated.
Alongside this many families are fighting for help for their child who is
struggling with mental ill health as a result of masking.
But this piece isn’t aimed at those families, it’s FOR these
families. Raising awareness of masking amongst professionals is vital for the
mental well-being of our autistic children. The aim is to save children from
distress, save children from trauma and save lives.
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 jumping and flapping,
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 spiral 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’ and appear ‘fine’ and maintain that
façade for yet another 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.
So, why am I so concerned with autistic masking?
Simply put masking hinders autistic life, actually that’s an
understatement. It hinders access to assessment and identification, it hinders
access to adjustments and support in education and it hinders others (including
parents) understanding of a child’s needs and therefore a child won’t have
adjustments made in any of their environments. Now if we consider Beardon’s
(2019) ‘golden equation’ autism + environment = outcome…… an autistic child
with no environmental adjustments or support will not be able to reach
potential and the outcome is dismal to say the least. In short masking causes high levels of stress
and exhaustion, autistic burn out and mental health difficulties (Hull, et al.,
2017; Cage, Monaco & Newell, 2018).
So if masking is so bad for self, why would anyone do it?
Survival is the simplest answer. Protection from being picked on by peers,
protection from adults ridiculing, and sometimes from their own parents who
know no better. Yes, I’m guilty of trying to insist my child just ‘wears the
blinking socks’ before realising she was autistic and wasn’t just being a ‘fuss
pot’. Many autistic children learn from an incredibly young age that it’s
easier to just try and ‘fit in’ and ‘not make a fuss’ if you don’t want any
unwanted negative attention. If I had a pound for every time someone told my 4
year old he ‘needs to get his hair cut’ I would be rich. These aren’t nasty
people, these are just fleeting comments to them. Little do they know that he
is petrified of having his hair cut and even sitting in the barber’s chair is
enough to cause him to shake and drop his bottom lip. Why should he be
subjected to that just to ‘fit in’? But sadly for many children the comments
and ridicule become too much and they buckle and submit to the ‘norm’.
So Let me break my concerns about masking down:
Masking hinders assessment and identification
You take your child to the GP, you tell the GP you think
your child may have autism, the GP takes a look at your child who is dutifully
sat there, asks them a few questions which they answer. The GP then states he
needs ‘evidence’ of difficulties in school, (and yes some professionals will
still state that if a child is autistic it will ‘show’ in all environments!)
The school say they have no ‘issues’ and that your child is fine is school. And
there you have it, you can’t even get a referral for the assessment pathway let
alone an identification! But let’s pretend you make it that far and your child
is offered an assessment, your child is then encouraged into a room with
unknown people to answer a set of questions. As these people are unfamiliar to
your child and your child is keen to please your child masks, acting perfectly
non-autistic. The second you get back to the car your child shuts down or
meltdowns from exhaustion. The result; no identification of autism and a
distressed child…. brilliant!
Identification of autism is important on so many levels, it
is summed up perfectly (and much better than I could write!!) by Zwanenberg
‘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’
Self- identity and ‘finding your tribe’ are so so important
for our autistic children. If a child can find her tribe (those she feels
connected and at ease with) then they are not burdened with social differences
or a lack of understanding about their needs. Research shows that social
‘deficits’ aren’t apparent between two autistic people! Yes that’s right, the deficit
isn’t necessarily a ‘defect’ of the autistic individual but actually the
non-autistic person has a deficit in autistic social skills! I am a big
advocate for teaching non-autistic people about how autistic prefer to
communicate rather than expecting autistics to learn ‘social skills’.
The very sad fact is that often children aren’t actually
identified as autistic until that mask drops. The mask becomes too heavy to
bear any longer, the long term suppression has caused mental ill health, severe
anxiety, incredibly high levels of stress and the mask tumbles dramatically.
Your child didn’t make it to the car and had a gigantic meltdown at school,
your child couldn’t manage the monstrous amount of energy needed each day to
get into school with a smile on their face and they hit a wall and point blank
refused to go anymore, your child started to self-harm, your child attempted to
take her own life. Even then often children are ‘treated’ using a mental health
intervention! You are told its anxiety, depression and your child is prescribed
drugs or even worse given a course of CBT! You are told that by keeping her
home you are ‘feeding’ her anxiety and that avoidance will only make it worse! This
is autistic burnout. If you don’t know about autistic burnout please look it up
and read some of the amazing blogs by autistic adults such as Kieran Rose (The
Autistic Advocate).
Anyway….. I digress. At this point your child’s autism may be
recognised. The problem with this is when identification comes at a point where
a child is rock bottom, 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 is necessary for good mental health, (Cooper, Smith
& Russell 2017).
Identification should not and must not be based on outward
struggles. Masking must be understood by all, parents themselves but also the
gatekeepers to assessments (Teachers, SENCo’s, GPs, health visitors etc.) and
those that assess for autism. The Lorna Wing centre do autism assessments that
last all day, during breaks when away from unfamiliar eyes the child is being
observed. As a child is in clinic all day it is likely that by the end of the
day the mask can slip. This gives the clinicians a good opportunity to witness
a child unmasked. Equally during my daughter’s assessment we ensured that she
was as comfortable as possible. The clinicians had details of my daughter’s
special interests which they used to engage her and make her feel at ease. My
daughter had seen pictures of the clinicians and she met them in a familiar and
known place. The assessment was conversational in style and she doodled as she
talked and showed them pictures of her pets. She was made to feel comfortable
enough to un- mask and speak her truths. These clinicians heard about aspects
of my daughter’s inner world that even I wasn’t aware of!
Parent blaming
Ok so your child is ‘perfect’ at school, but at home you
have a child who is distressed, explosive and seems unable to control their
anger. This is the Jekyll and Hyde
phenomenon (Attwood, 2009). When you approach school they are shocked by the
child you are describing, when you speak with the GP they too don’t believe
that the child sat still and quiet in their surgery can be the same one you are
describing. Not only that, but because they behave well at school, the issue
must lie at home……with the parents! Parents are advised to go on a parenting
course, aimed at teaching parents to have tighter boundaries, be more
consistent and regain control! This approach is damaging for an autistic child.
If a parent protests this and makes several visits to the
GP, insists on second opinion and fiercely refutes that her child difficulties
are down to her parenting and demands autism assessments they are deemed to be
trying to ‘label their child’. Or in more extreme case accused of fabricating
illness (known as FII, Fabricating or inducing illness). Particularly at risk
are autistic parents (including those not identified as autistic). 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’. The National Health Service (2019) suggest considering FII when
‘the parent has good medical knowledge’, which considering many autistic
parents knowledge of autism will be good, this is a concern. All of these ‘red
flags’ could be attributed to a child that masks. Children have been known to
be wrongly removed from parents, I know from my role that some parents are
fearful of being deemed over anxious and/or neurotic by professionals when they
try to fight for their child.
Masking hinders in school adjustments and support
So without identification and without any signs of
difficulty (due to masking) getting adjustments in school can take some
fighting (not in all schools, I do work alongside some amazing SENCo’s) but sadly
not every child and family has a ‘me’ and not all schools are as aware and
supportive.
If your child does have a formal identification of autism,
masking can still hinder access to support. Again, if a school doesn’t ‘see’
any unmet need or difficulties and/or the child isn’t causing any disruption or
upset to others then why would they (if they aren’t aware of masking that is!).
As well as denied adjustments, children are denied access to additional
services such as advisory teachers or educational psychologists (that schools
are gatekeepers to).
In my role I have witnessed schools having the attitude ‘we
can’t refer because we don’t have any issues’, ‘she’s fine here so it’s the parent’s
problem’ and ‘we don’t actually believe she has autism’.
I truly believe that every autistic child should have a support
plan. This should be developed in collaboration with parents, the child and a
trusted adult in school. This should be based on a child’s differences,
difficulties and presentation in ALL settings and not purely based on how they
appear in school.
Without this a child that masks will burnout. Very often
these children become our school refuses and develop mental ill health. Once a
child hits that wall and refuses or becomes burnt out its incredibly difficult
for them to return. Trust is lost, trauma is long lasting and recharge is a
long process. The support has to be there from the beginning. Success from the
start, not intervene when things start to fail.
And finally…….
Ok so other than poor self-identity due to delayed
assessment and/or identification, lack of understanding of self, no tribe,
unmet needs in school, autistic burnout, inappropriate parental responses to
needs or parents being deemed neurotic the other factor that risks the mental
health of an autistic child that masks (just in case you needed additional
ammunition!!) lies with others mis-perception of a child’s masking behaviour!
I have experienced people who deem masking behaviour as a
child being ‘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.
What else needs to change……
All professionals working with children need to be aware of
masking, but not only aware but a deep understanding of the depth of it, the
reasons for it and how to support a child in feeling safe enough to share their inner self.
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.
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! 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 me!
I am a parent to 3 children, 2 goats, 6 hens, a gecko and a
dog.
I am also an independent autism specialist 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 autistic children. I also
offer training to schools. Working alongside families on their journey is an
absolute privilege. Every child I meet teaches me something new. Autism is my
special interest and I am passionate about my role.
Jodie
