Children who ‘mask’ or ‘camouflage’ their Autism
Those who haven’t experienced the frustration of being misunderstood as the parent of a child with Autism can find it hard to believe that the perfectly behaved little girl (and it is usually little girls) who keeps her head down at school and tries really hard to comply and ‘fit in’ with the other children can suddenly change when she comes out of school. Many parents report that they have barely got out of the school gates before the ‘meltdowns’ start. Sometimes there is no apparent reason, at other times she may be able to verbalise that the teacher has been mean or that someone has refused to play with her. For others it may be the realisation that very soon it will be homework time again and once again, they are not sure what they are supposed to do or how to go about it.
I walk into the room and feel like people are looking at me.
Girls in particular can be very good at ‘masking’ their worries and anxieties. They will smile, laugh and joke with the other children, appear to be getting on with their school work and have lots of friends. However, the strain of trying to keep this up all day can be huge. Grown women who are Autistic have explained to me what it feels like. ‘I walk into the room and feel like people are looking at me’. ‘I have no idea what to say to people or what they expect from me’. ‘Everyone else seems to know what to do’. These are adult women, who have had years to learn how to cope and appear ‘normal’ (whatever normal is!). Imagine how much harder it must be for an eight, nine or ten year old. Girls’ friendships become much more complex at this age. What is said is not always what is meant, girls talk behind each other’s backs and make nasty and sarcastic remarks. For a girl on the Autistic spectrum, this is unbelievably difficult to negotiate.
So many parents report not being believed or being accused of poor parenting when in fact they are trying their best for their children. It can be difficult to even get an assessment. Many diagnostic teams are hugely over-stretched and may be forced to rely heavily on reports from schools when reaching a decision to assess a child. So what happens if the child masks and behaves perfectly at school? How can parents persuade professionals that there is a genuine difficulty? Some resort to videoing or recording their children on Smartphones. I can see why this might be tempting and why parents might feel the need in some way to ‘prove’ that their child has difficulties. However, imagine how it would feel to be this child? She is already trying her best to fit in and probably already knows in her heart of hearts that she is ‘different’ to the other children. Also whilst a parent is busy recording a ‘meltdown’, they are not emotionally or physically able to help their child.
The majority are good, caring, exhausted parents who are trying their best …
What is actually needed is a far better understanding by teachers and health professionals about how Autism presents in girls and the issues of ‘masking’. If this was more widespread and professionals were able to move away from the male (or more typical) presentation, parents would not feel this need to prove themselves. On so many occasions it is suggested that rather than the child having difficulties, the problems lie with the parents or the term ‘attachment disorder’ is put into the mix. Some of the parents I have worked with have even been accused of fabricating their child’s problems. In all the years I have been working with children on the Spectrum, I can honestly say I have not come in contact with any parent who has deliberately ‘made up’ behavioural symptoms. The majority are good, caring, exhausted parents who are trying their best to come up with strategies to help their children. That is not to say that there are not sometimes other explanations for a child’s difficulties. Family life is hard, things happen within families, people are stressed, modern-day parenting is not easy. Going right back to the original work which was carried out by Mary Ainsworth looking at attachment, it was noted that only 70% of children have what is referred to as a ‘secure attachment’. This means that 30% do not. However, 30% of the population do not have the anxiety and behavioural challenges reported by parents of children on the Spectrum.
Both education and health professionals may need to look again at the research into girls with autism and listen to their stories. They may need to look beyond a superficial sociability and (apparently) good friendships. There is certainly a need to look again at how and whether ‘gold standard’ assessment tools such as the ADOS (Autism Diagnostic Observation Schedule) work with girls (and boys) who have learned to ‘mask’ their difficulties. The ADOS was never intended to be a one-off definitive assessment – it should be used in conjunction with other evidence gathered from a variety of sources. The long term risks of not helping these children and young people are significant and real – many will go on to have relationship difficulties, problems holding down a job and significant mental health problems in adulthood. PDA and less obvious forms of Autism are not a new phenomenon – we just need to get better at identifying them early.
A Guide to Mental Health Issues in Girls and Young Women on the Autism Spectrum: Diagnosis, Intervention and Family Support
This book addresses the specific mental health needs of girls and young women with autism spectrum disorder (ASD). Looking at the ways autism presents differently in girls than in boys, and the mental health conditions that occur most frequently in girls with ASD, this is the essential guide for clinicians and educators on tailoring interventions and support to meet girls’ needs.
Describing the current assessment process for autism diagnosis, the book explains why girls are under-
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Spot on. I am now a pensioner and recognise these behaviours in myself as a child. I had terrific parents, and in hindsight my dad must have seen the problems building up as I was frequently off school 'bilious' – never physically sick but back then the time off probably kept me stable and on track. The upside is if you survive it then you can become a strong self reliant and – school buzz word "resilient" adult.
Thank you so much for this! I have been waiting for the first instalment ever since I heard you were writing one! And you have touched a subject straight away which is very relative to me, my girl is a masker, and it was so very difficult to get the school to understand or even believe me I had to go to all lengths to get assessments! Thankfully she is diagnosed now and in a special education school!
Thank you
This is just the information I need to show to my daughter's school.
Thankyou – wish this had been written years ago, my son might have been diagnosed and helped before he started self harming due to the fallout of masking all day.
I have a 9yr old son whom has every symptom of PDA and when I spoke to the doctors they had no clue what I was talking about, this is the 2nd time I have had to refer my son, it's a long story but basically they blamed me as a parent, that was 3 years ago and I am now having to go the same route, he's had his initial assessment and although I pointed out PDA they brushed it to one side and are testing him for ASD or ADHD but when I don't know as I am in a long queue, I have struggled since he was 2 and put a lot of procedures and routines in place myself and have come a long way on my own, but it's times he gets a diagnosis so I can deal with it and understand his thoughts, sorry for the long post but I have been on my own in all this for 6 years !! X
Thankfully we had a really supportive primary school for our son; we are in the process of getting him assessed – it is still long and arduous, with many professionals insisting that it can't be PDA/ASD due to lack of problems at school. Our son is now in year 7, his new school are trying hard to be supportive but seem to struggle more than the primary school with the fact that his only problem at school is lack of concentration on occasions (yet another coping/masking mechanism developed by him) It is hard but slowly we are getting there; there needs to be so much education about the issue of masking – it is so widely misunderstood.
This is exactly what I am going through at the moment with my 6yr old son. Youngest of 4 children which are all managing fine in life. My parenting has been questioned..I have adopted a lot of the parenting methods used to tread pda before I knew about it. He has meltdowns at school daily, has run away resulting in the police being evolved. Now I have a social worker coming out to see if I need support parenting my child!!!@!!!!! Ermm no I need help getting through to cahms and getting them to help my very anxious and unhappy boy. So frustrating xx
My 6yr old boy has been struggling socially since nursery and concerns were raised at that time..when started school it go progressively worse.. he cannot control his emotions. He doesn't "get" social cues and can't relate to people. He has meltdowns at school and is in complete crisis mode most days requiring him to be restrained on occasions to keep him and others safe. He is a master in avoidance at school, has not concept of safety. When he is anxious and in crisis mode he tryst to hide in small places as I assume he feels safer.
He was assessed by cahms for Adhd (which I said he didn't have) and was advised he was a difficult child to parent!!!!! I have been advised to do parenting courses.. all my 4 older children are fine and happy.
Cahms are useless.
The school has been great but their is only do much they can do.
I feel like banging my head against a brick wall
This is a fantastic article, one to print out for my daughter's file. You have described my daughter perfectly, she is not quite 5 but I've been told that she's too young for a ASD or PDA diagnosis – she has a SPD diagnosis for now. I've done a lot of research and it is so clear that this was me as a child and now is my daughter. 25+ years ago I was labelled as 'painfully shy,' then at 26 given a diagnosis of Bi Polar, I am currently at the start of getting an adult diagnosis – to finally get some answers to what I've wondered about myself all my life.
Excellent article except this bit:
"Some resort to videoing or recording their children on Smartphones. I can see why this might be tempting and why parents might feel the need in some way to ‘prove’ that their child has difficulties. However, imagine how it would feel to be this child? She is already trying her best to fit in and probably already knows in her heart of hearts that she is ‘different’ to the other children. Also whilst a parent is busy recording a ‘meltdown’, they are not emotionally or physically able to help their child."
Firstly, most parents would do it inobtrusively and a child in meltdown is hardly likely to notice anyway but secondly, most children in meltdown don't want a parent to hug them it can be the worst thing to do! Lastly, it can be the only evidence that the parent has! What else are they supposed to do especially if their parenting is being criticised!
In some ways count yourself lucky, they could be raising an unwarranted child protection case, as in this instance:
⚡ This petition represents all LAs which misrepresent and harass autism families as the problem is widespread. Read information on the petition about which S47s are illegal and what is going on. I urge you to sign and share as widely as possible. This could be your family. ⚡
"Make Brighton & Hove City Council Cease Illegal Section 47 SS Investigations"
https://www.change.org/p/edward-timpson-mp-make-brighton-hove-city-council-cease-illegal-section-47-ss-investigations
"On so many occasions it is suggested that rather than the child having difficulties, the problems lie with the parents" – as in this case:
⚡ This petition represents all LAs which misrepresent and harass autism families as the problem is widespread. Read information on the petition about which S47s are illegal and what is going on. I urge you to sign and share as widely as possible. This could be your family. ⚡
"Make Brighton & Hove City Council Cease Illegal Section 47 SS Investigations"
https://www.change.org/p/edward-timpson-mp-make-brighton-hove-city-council-cease-illegal-section-47-ss-investigations
This resonated with me so much, after years of fighting to get a dx I eventually managed- high functioning Autism and indicative PDA for my daughter. She suffered a breakdown and tried to kill herself and self harmed. She was given very little support and we weren't believed even with the diagnosis…she's been in therapeutic care over a year and we still have professionals saying that she's not autistic and I've made some of her behaviours…..in care she does display but as it's not an ASD unit but behaviour, they do not understand.
Or can see her issues. We currently have managed to get the Tavistock in London to assess her needs…professionals are also insisting she has a more up to date assessment for her autism…they still don't believe she has it as she is so good at hiding it….so frustrating and has had a real impact on our family and my own health.
Great article thanks x
At last. Someone who speaks for us parents who have been ignored and blamed for so long. If only the mental health care was consistent and adequate. My experience of the new EHCP doesn't fill me with confidence either.
This sounds as though you're speaking about my boy. He's 9 and I've actually been on the parenting course to prove it isn't that (and because they offered free childcare – so it was essentially respite) A diagnosis seems impossible to achieve, but he is most definitely on the spectrum. I also feel not listened to.
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Spot on!
My full story can be found here:
My four-year-old son has been off nursery for two months now due to nursery refusal.
My son's EHCP is not fit for its purpose as it does not accurately reflect his level of need, and this is a reflection of me not being listened to and my son's needs not being understood.
Brent council has rejected my request for deferment saying that it is not in my son's best interest for him not to start the school this September although there is no plan in place on how to resume his attendance at nursery or the importance of his transition to school.
At the TAC meeting, I have requested the network to watch video footage of difficulties dropping my son at nursery, and his nursery refusal which was also witnessed by the Speech and Language Therapist who attended nursery at the end of Apr.
As the Child Development Team in Kentish Town, London refused to provide information about my son's nursery refusal or failure of ASD interventions applied to Brent Council despite all my efforts to communicate this EHCP Coordinator made an assumption that my son is simply refusing to attend nursery because he is 'bored'.
When I set on a quest to obtain a differential diagnosis for PDA for my son as 'typical' ASD interventions were having more of an adverse effect on him, my son already has a diagnosis of ASD since Mar last year I had no idea about the challenges that were to follow.
I was puzzled by my son's autism as children with ASD I saw at special needs nurseries were nothing like my son. I had a light bulb moment when I came across the PDA profile in children with Autism. As a result, I have attended PDA conference in Reading and parental program for parents with PDA children in Norwich organised by Help for Psychology.
The Child Development Team in Kentish Town, London disagreed that my son may have PDA and refused to engage further in exploring PDA strategies, instead, I was asked to go back to my son's GP and pursue the PDA assessment myself.
After a year of waiting and chasing my son's GP, a request for a PDA assessment has finally been approved however I was told that my son can only be diagnosed by South London and Maudsley which specialises in mental health and has no specific policy for PDA.
Autism is a neurodevelopmental disorder and not a mental health issue, therefore, it is not unreasonable for me to expect that an assessment is carried out by experienced clinicians specialising in the area of Autism Spectrum Disorders (ASD) including PDA and not mental health professionals.
The lack of support I've experienced from a variety of services means that families like mine are often relying on their own research to work out how to support their children.
The 2018 survey conducted by the PDA Society highlights that the school environment does not work for many children with PDA. If this is the case then both children and parents should be supported appropriately and not ignored or reported to social care for their child's non-attendance.
After spending substantial amount of time on the PDA Society website I understand that parents get penalised for their child's non attendance and sent to attend parenting courses ( undiagnosed children ) or ASD parenting courses such as Stepping Stones or Early Bird which has also happened to me that do not work for children with PDA as PDA is not a parenting issue.
After consulting with IPSEA – Independent Parental Special Education Advice I now understand that education does not necessarily need to take place in the school setting as advised by Brent Council if the child's high anxiety and their demand avoidant behaviour is preventing them from attending the setting or ASD strategies previously applied made the situation re school refusal irreversible.
Totally agree
This was like reading about my son 100 % but because he makes good eye contact and didn't score highly on his ados they said there wasn't enough to diagnose. It's heartbreaking we waited 3 years for that assessment and all our parental interview was ignored because he masks in school and they were believed over us. I can't afford the thousands required for private assessment so my son will continue his life ignored and unhelped. ????
Absolutely!
It is a great article but such a shame it is so heavily gendered. Mentioning the gender bias for the presentation makes sense but making it essentially almost completely describe just girls means if I share it with professionals, they will again dismiss my son because he is not a girl.
Yes. But please can we move away from 'male and female' presentation. It makes it much harder for boys who present in this way to be recognised, and also, it's a bit harsh for boys to be labelled as female presentation when there are already enough difficulties going on. What you say is spot on, but it would be hard for me to take it to a school and say 'this is my son'
Hello Emily – The next article covers boys – https://help4psychology.blogspot.com/2016/11/its-not-only-girls-who-can-mask.html