Over many years of working with families and school I have come across such an abundance of children with autism who appear to be highly vulnerable – ironically, as a direct result of being intellectually able enough to do a sufficient job of seemingly ‘fitting in’ at school while the reality is very different.
The profile of these children is that they may be academically able, and have the skills necessary to hide their autism ‘characteristics’ (often this is in the form of keeping a lid on behaviours that they might display in other situations, e.g. at home) and are able to use considerable intellectual effort to ‘conform’ to a degree that their actual needs may be overlooked. Many of these children, it should be noted (though, of course, not all) are female – and many may not have a diagnosis (again ironically, for similar reasons as outlined). Very often, these are children who would not appear to qualify for an Educational Health Care Plan (EHCP – what used to be a statement) and would not usually be considered for an educational placement outside of mainstream school.
From an educational perspective this is absolutely understandable; why would schools seek to create a problem that does not seem to exist? However, in my view these are some of the most vulnerable children on the autism spectrum. Talking to parents as well as autistic adults (very often who have been diagnosed in adulthood) it becomes apparent just how traumatic school life can be for these children. Individuals report that they spend a huge amount of both intellectual and emotional effort simply to be as inconspicuous as possible; being ‘in the spotlight’ or drawing attention to self is reported as hugely stressful and anxiety provoking – hence the very reasonable rationale of wanting to avoid any kind of unwanted attention. This, though, leads to two key issues:
1. With such a degree of conscious work going into reducing anxiety by trying to ‘fit in’ the pupil may be at a considerable disadvantage in relation to their academic studies;
2. With any kind of success at ‘fitting in’ the pupil may be masking very real problems that teaching staff might otherwise be aware of.
The result of the above could be that a student ends up being intellectually drained without reaching their academic potential while at the same time leading educational staff to believe that there are no underlying problems – a double whammy that can last throughout a whole education (including Further and Higher educational experiences). I have met so very many adults who suggest that they would have been able to get far better grades had they not felt the need to make such an effort at pretending to be someone else at school.
One of the major problems with this situation is that very often high levels of anxiety remain with the pupil/student. While ‘copying behaviour’ (echopraxia – in this case, conscious) may alleviate the day to day confrontations that the pupil seeks to avoid, it does not necessarily reduce overall anxiety. The pupil still has to work up the courage on a daily basis to enter into an environment that they find confusing and chaotic, while at the same time working up the energy to put on a façade to reduce any unwelcome attention. Imagine you know that you have to do something that causes you stress – perhaps a job interview, or an exam. When you wake up in the morning, how do you feel? Would you prefer not to have to do it? Are you dreading it? Are you wishing it was already over? Having spoken to many children and adults with autism I believe that similar feelings of dread are felt by pupils accessing mainstream schools – but they have to put themselves through this every single school day. Some days are even worse than others – having a lesson (e.g. PE) that is less structured than others, or having a day that it outside of the ‘norm’ (e.g. non-school uniform day) can add to overall anxiety, sometimes to an extreme degree. There is little research into lived experiences of ongoing, long term, consistent levels of anxiety for school children with autism, nor the subsequent impact; research does suggest, though, that levels of anxiety for school-aged children are higher than their peers.
Autism has been referred to as ‘invisible’ – I suggest that even within the ‘invisible’ autism population there is an even more hard to reach group; children who are in desperate need for understanding and support, but whose at-school presentation does not indicate any particular issue with attending school. Sometimes, it’s the hardest to reach group that are in the greatest need.
The problem is that the better a child masks their autism, the less clues there are for the teacher, who cannot be expected to see beyond the mask. People who “manage” their autism in this way are unlikely to have it noticed unless they reach a crisis. Or else they don’t suspect they are autistic at all, until they find themselves relating to something they read, or to someone with a diagnosis. They may know they have “difficulties” without ever identifying why these occur.
To research this, one would need to find the “hidden” autistic children, which is paradoxical. If there was better awareness and acceptance of what autism can look like – if it were not presented so often as very extreme behaviours, perhaps relatively common autistic behaviours would be recognised as possible autism, rather than as shyness or misbehaviour.
I totally agree – and yes, it is somewhat paradoxical. I think autism should be viewed far less in terms of behaviour anyway, as there is no such thing as ‘autistic behaviour’ in my opinion. Sometimes anxiety can be expressed in behavioural terms, but the group of children I have written about seem to minimise this and subsequently get less support – or, as you note, a crisis is reached.
Many thanks for taking the time to comment.
I have been saying for some time now, schools need to be made to be on the lookout for (especially girls) who are geeky, awkward, loners, on the periphery, shy etc. to observe whether they may need assessing for autism. So-called low-functioning autistics are nowhere as near as self-aware as “high-functioning” ones and therefore tend more towards contentment. But people who are intelligent, superficially more able and academically capable are the ones at great risk of mental health conditions as a result of being so aware of their differences – and receiving little to no support for them!
You might like my blog post here: http://corticalchauvinism.com/2015/07/27/the-hidden-difficulties-of-autistic-children-in-school/
This is true – but unfortunately even if they get as far as being assessed it doesn’t mean they’ll get diagnosed. This exactly describes my daughter who has had a previous referral to CAMHS for anxiety and low mood associated at least partly with not fitting in at school. I managed to get a referral but her communication is good and was told Broader Autism Phenotype. To be honest even if she had a diagnosis I don’t think it would have made much difference in terms of support. Unfortunately, 3 years later she’s anxious and depressed again and waiting the outcome of another referral.
Thanks Helen.
This is so painfully true!!! I was invisible at school. They assessed me age 9 (Ed Psych), and this report basically was a run down of most of the autistic traits I had (the only bit missing was my intense interests, but they were silent at school!). I was not diagnosed autistic until age 21!!! The Ed Psych report recommended that school initiate the process of SEN, and help me with confidence, numeracy, organisation, comprehension, etc. The school did the bare minimum, and parents did all the work behind the scenes, so it looked like there was not much of an issue. Secondary school seemed oblivious to the fact I had no friends, and it was not helped by the fact I was in denial over my difficulties. I mostly behaved at school, at least around teachers. Yet I developed severe OCD that I carefully masked – I held my breath in lessons because of a fear of germs, but told no-one, so I received no help!! It was my parents who encouraged me finally to get therapy, and this led me to accept I had a problem, and ultimately to find out about Asperger and ask for a referral to be assessed (all on my own initiative, but my parents had been hinting at it for years – they were waiting for school to act, but school never raised the possibility!!). The Ed Psych report had revealed a huge spiky profile (off the charts in terms of discrepancy),and other red flags, but nothing was done! Years were wasted in my teens, as I hid away (luckily had intense interests that helped), in a pit of OCD and phobia. Makes me very angry. Too well behaved at school for my own good, or maybe was because I made eye contact and was not stereotypical – also the fact I’m female!
Also wanted to add that my specific interest was Kate Winslet – parents and family knew about it, but kept it hidden at school (was masked). Same with strong interest in babies and child development. Was never geeky. Really really bad at maths and puzzles – maybe that’s why I was missed. All the signs were there, but they were not obvious. I have always been hyper verbal (a huge strength), but performance wise my IQ was only 58-74 (99-111 for verbal!!). So I can sound very educated, and I don’t speak oddly (at least when I’m masking). If anything, I sound very articulate. I have learnt the hard way how to get by socially, but still struggle to understand relationships, and socialising is very very hard work. Also struggle with organisation and multi tasking, and get into ruts very easily. Thankfully I now receive support, but still struggle with ”adulting”. It looks like I can manage, but what people don’t see is how tiring it is (even doing basic things), and I’m not in work. I’m called high functioning, but that’s only because of my verbal gifts. Non verbally I really struggle.
However, the problem I encountered as a parent of such a child was that when I approached my son’s school to share them of my realisation of this situation they first said that ‘yes, we agree that he is on the spectrum..but didn’t feel it was our place to tell you’ (really, am still puzzling over who they thought should) and then, dismissed us quite aggressively because his ‘masking’ was such that it wasn’t causing them any problems. When we explained that the anxiety he built up all day from doing this was spilling out at home as meltdowns, they decided that the problem was ours & that our son had attachment disorder. The school knew that I was an attachment disorder (nurture) teacher in an SEN school so can only assume that as he clearly did not that it was a disgraceful attempt by a weak head to mask her own shortcomings. Needless to say, as a family, we had enough issues of our own without shouldering the burden of this headteacher’s ignorance, so we de-registered. It’s ok for a school not to recognise at first, but it’s not ok to ignore a child’s disability just because it’s not convenient for them to do so. Actually, it’s not ok not to spot the issues, as you rightly allude to, they really should be trained how to. Thanks.
my previous comment was in reply to Cos’ post.
Sadly though, even when articulate parents are able to share this knowledge with schools, they can be too lazy to look beyond the obvious..this is why so many ASD families end up homeschooling and/or applying for their own EHC Plan. Worse still for those vulnerable families who rely on schools to make the first move..so many young people have their education ruined by inadequate recognition & intervention. I’d like be positive but in Lancashire, I’ve seen very little good practise across mainstream education.
Thank you Luke for another great article that I will be sharing.
This is a great article and I suspect there are many children and adults that are in this position, without any recognition of autism. It is often so difficult anyway for autism to be recognised, especially when there is high intelligence and academic ability. My son was always on the gifted register at school and ‘managed’, but once he got to about the age of 8 the gap between himself and peers socially began to increase and his behaviours labelled him as ‘naughty’ at school. I was aware of the high anxiety, but school would not acknowledge this and the pressure of trying to continue to ‘fit in’ and be accepted eventually reached crisis point at the age of 12 where everything just fell apart and he has not attended school for 2 years now. He has now been assessed as high functioning autism/PDA. Had this been recognised when he was younger and support put into place the trauma could have been avoided, but it is very difficult when they ‘seemingly’ function.
Thank you for the comment. This – sadly – sounds to me like a familiar tale. It would be great if we could research into just how many children follow this pattern and identify what can be done about it!
Maybe I will get a job doing some research when I have finished my masters. Think it’s the kind of job that might allow me to be at home near my children more.
Doing my masters has been so good for our family so thanks to everyone at SHU but especially to my amazing tutor. She has been challenging my opinions since I got there, which has been good for me. She is knocking the medical model out of me.
It’s sad that all parents of autistic children, and autistic people themselves, don’t get access to good quality education about autism. There is really a lot of bad information out there and you have to try and filter the bad from the good.
This fits my son perfectly, and I will be printing off a copy to send to school.
Do you think there will ever come a time when these children are adequately supported in school, and their difficulties will be recognised?
A very good question! There is always hope…I believe that many of these children actually ‘only’ need a level of understanding and acceptance which could improve their educational experiences hugely. It’s more a question of how to develop that understanding and acceptance I guess!
I have a daughter who masks perfectly, the struggle is for parents who are ignored or judged, they are the people that see the horror of the effort our children are making at school. There needs to be more holistic considerations, parent questionnaires and parent only parents evenings, asking if pupil has any challenges. Then the next challenge is what to do with the information the parent is sharing.
Often parents ARE flagging these children, even if ASC isn’t on their radar, they are witnessing the anxiety and fatigue that accompany ASC. When they raise this with the school, they are very often ignored.
All too familiar. However in the case of my son he does display behaviour, I have graphed this and it is usually around increase in anxiety related to change he is unaware of, communication issues, sensory stimuli and issues around his self esteem (teacher telling him she doesn’t want to teach him- fantastic).
Currently in the process of submitting for a plan, the school and I think he would benefit from the local school for children with additional needs. However as he is deemed academically on target the education authority have suggested a school for children with conduct disorder who have been through the criminal justice system! I have loudly voiced my concerns and said “over my dead body” to be told why not when he has a melt down there is a “cell” for him to utilise. Brilliant – that’s ok then! By placing him here with his ability to copy behaviour by the very nature of him you would be creating a conduit disorder in my opinion. Self fulfilling prophecy.
It would appear that no matter how much awareness is raised the local authorities still remain ignorant to what is required, what is actually needed before children like my son end up damaged and spending a life long revolving door type in mental health services!
Continue to fight is all that can be done!
Another chapter for the book written!
Very good article, Luke. I agree wholeheartedly with what you say. I’m currently home educating my 10yr old daughter. She was in mainstream school for 5 years. Unlike most, she received a diagnosis at the young age of 6 1/2. But, her ‘holding it together’ behaviour resulted in teachers not seeing what was truly going on with her. She came out of school every day ready to burst. We’re in Scotland and she had an educational support plan for 2 years, which was stopped, when she seen to be coping. Then she was placed in class where there were a couple of children who did not blend well with her (fine in the playground, but not in the classroom, where she was trying to get on with her work and finding it impossible to concentrate). She became increasingly stressed and anxious at home. I had cause to speak to the head about my concerns and she suggested no steps to help deal with the situation. Eventually, my daughter lost her temper in class. But, the head teacher suggested to us that she was displaying ‘learned behaviour’, despite the fact that she’s always been a very well behaved girl before. There was absolutely no chance of her getting a place in a specialist unit, so we took the decision to home educate. Thankfully, we’re in a position where this is possible, but others aren’t so fortunate and their children are forced to be in an environment, every day, where their mental health is being seriously affected. After taking her out of school, I took her for a dyslexia assessment, where it was confirmed that she’s also severely dyslexic and otherwise about a year ahead. School had disagreed with our concerns, but I also believe they mistakenly didn’t have high expectations for her, due to her autism.
Amanda – thank you for taking the time to comment and provide valuable feedback. Your situation sounds rather familiar to me! I would love to know just how many kids go through this sort of experience…
Thank you for your blog, it’s very interesting and this definitely applies to my daughter and my son. We are just about to commence assessment for an ASC diagnosis for him but I’m very confused. Reading thru all the bumpf that I’ve received it says that to be given a diagnosis of an ASC, behaviours have to be experienced in different environments. As my son has become very good at ‘masking’ at school I’m concerned that they will not see the real him.
My son started struggling at 4 1/2 but not at school.His aniexty was extreme that he tried to control home life.New shoes,clothes were upsetting, not doing something in a set way, wrong ham, cup,plate ended in meltdown.He hates being in his room by himself but all this can be masked too.Very few have seen the aniexty and dealt with the panic attacks as nobody likes him (he is a popular 6 yr old).So a yr and half later we r still struggling.Ados assessment showed over cut off but as conforms at school won’t diagnosis
This is really a problem when the school (or nursery) staff act as gatekeepers for even getting a referral never mind an actual diagnosis. There seems to be little or no training on autism for teachers/caretakers. Even when a qualified parent voices concerns about autism they may not be taken seriously. By qualified I mean, autistic, part of a family full of autistic people, one medically diagnosed child and studying for a masters in autism. Thankfully our GP gave us a referral, but of course nursery will be asked for input. That input is likely to hinder a diagnosis rather than help us get one as she masks so well. Even sensory issues are hidden at nursery, she will tolerate clothes that she won’t tolerate at home. I am happy she is comfortable enough to express her emotions at home, it would really help her if she did the same at nursery though.
Although her nursery carers don’t believe me when I say she is autistic, they are attempting to change her environment so I am grateful for that. I think they believe they are doing it to keep the over anxious mum happy though 🙂
Even when we get the diagnosis, that in my opinion shouldn’t even be needed to access services, we still find that problems have to get to crisis point before the right help gets offered. It’s really quite a depressing state of affairs and is not surprising that many parents turn their back on the school system and switch to home educating. It isn’t fair though, every child has a right to a good quality education and it is the local authority’s job to provide that. In many cases they are failing our autistic children.
Luke, I agree that there needs to be more understanding and support through education and in my view, in the form of, initially, a more individualised curriculum for all and flexible attendance allowances even for those children who seem to be, superficially, ‘the same as other children’. There is a problem which does exist. This issue is that a ‘one size fits all’ education does not work. It seems to get worse as children go through school, from primary to secondary. It appears to be a bit better at the university level where students often chose the subject/subjects/ topics they are studying (e.g. narrower focus). This seems to suggest that some children require less subjects/topics to focus on-especially during those gruelling secondary school years. Many children simply cannot focus on all of those subjects topics concurrently which is one key reason why anxiety levels are high at school. School environments can be difficult for many children. If anxiety at school is an issue (due to: expectations to be in the school environment Monday-Friday; inflexible curricula; not being allowed to spend enough time on interests; testing standards etc.), allowances for time off shouldn’t be a cause for concern. Children can learn more outside of school anyway-and are free to learn in their own way. If time off doesn’t work there is home schooling. That is why many parents home school-less anxiety. Although anxiety is a natural human feeling especially concurrent with triggers in the environment and standardised assessment in schools there are natural ways to alleviate this. 1. Children should be playing outdoors more in the sunshine-parents should, possibly on a rota basis, have time off work during some daylight hours to get some exercise, fresh air and sunshine (if there is much of it!) with their children. What are we doing to our children?-keeping them indoors for most of the daylight hours and expecting them to conform to ‘standards’. 2. Arts and the word ‘critical’ should be separated in order to allow individuals to express themselves through those mediums without hindrance-there is much we can learn about an individuals true self/ feelings through looking at their art work. Maybe this is a way to recognise needs which are ‘hidden’. Expressing feelings freely through the arts is a key approach to alleviating anxiety. Consider small children’s engagement with art in comparison with older children, for example, as an illustration of this point. Pressures to perform for exams seem to necessarily detract from a person’s true self, abilities and accomplishment. I think that since every child who is recognised as ‘having’ autism is different from another, this label seems superfluous in addressing support needs and allowances for differences to be ‘lived’-(e.g. being yourself).
In regard to intellectually able children, many of them are interested in a topic or certain subjects or ideas etc. and from my perspective, they should be allowed to focus on their interests instead of having to conform to ‘standards’ within curricula which should help with anxiety at school. One issue is that a ‘one size fits all’ education does not work. School environments can be difficult for many children. The pressure to conform to standards damages self-esteem and creates anxiety since children just want to be themselves. ‘Copying behaviour’ would seem to be partly a response to standardisation in schools and partly a pressure to conform to the ‘norm’ by peers through bullying/unacceptance etc. This indicates environmental factors for this type of behaviour. That is why ‘having’ autism is not as straightforward as it seems to be.
Another issue is that the accumulation of grades is not comparable to what a child has actually learnt or is interested in which may well be outside the sphere of testing, especially in this information age, and also what a child may actually be good at doing/be capable of which is often not always catered for in the education system. Many children recognise this and only adds to anxiety.
A third issue is that needs may actually turn out to be strengths if children are allowed to flourish in their own individual way. For example, behaviour in one context/application may be more suitable for another context/application where it may be considered more of a strength rather than a need. We need to be creative about this. We should think-how can we turn perceived needs into strengths? There are certainly different perspectives.
The often apparent disparity between behaviour shown at school and at home is a desperate attempt to convey these issues to parents since the school system is bent on conformity and standardisation and often does not listen or change-people said to have autism with good intellectual ability are simply individuals who need to live as such.
Thank you – some excellent and thought provoking aspects you have highlighted here!
To add to my last comment-although home-schooling can be an option, that should be supplemented (if not already available) with a good teacher (teachers) since information from the internet isn’t sufficient I think. We need good teachers. Going to school is a good thing IF children and teachers are allowed the freedom to be individuals. I think, however that the hours are wrong-8.30-9am until 3.30 and onwards should be changed to 11-3.30-4. Where is the time to go for a walk in the morning in the daylight or to do some gardening/farming? I realise that too much sun is not good but we need fresh air and exercise and there are such things as hats etc. We are all likely very tired after all of that information loading so why not have space in the morning to socialise while walking, gardening/farming? Why don’t children go to work with their parents or friends parents more often-they might learn a lot-maybe more than they learn at school? Depends on where and with whom they go I suppose. There should be more integration between different ages both within formal schooling and out of formal schooling. There are issues with self-harming, obesity etc. Are these factors made worse by the education system? I think so. Autism is just a label. Bringing together the ‘behaviours’ and ‘symptoms’ etc of many people in the population and labelling them as a syndrome in effect even if not any more in words (since every person apparently WITH autism is an individual) can be likened to bringing together many children in a school and expecting them all to fit in. People cannot be contained in a label any more than they can be contained in a school which stifles them. The issue is not how to reach or help the ‘group’ but how to allow the ‘individual’ to be their good selves. That is most likely what they need-on an individual basis. I hope that people may understand what I mean. If anyone understands-let me know?
Yep. Don’t forget, though, that some of us mask to the extent of still performing very well academically. Burnout inevitably comes (17 for me, after years of not being able to say how much I was struggling, and thinking wanting to die was normal). Thank god for adult diagnostic pathways, finally.
Yes, I agree – and burnout after a prolonged sustained effort can be quite the shock!