Mutual Aid and Human-Centered Learning for Neurodivergent and Disabled People
School-Induced Anxiety
The term ‘school refusal’ is linguistically weaponised; it implies intent and choice. It swiftly and subtly frames the child as having taken an active, conscious decision to reject school. This misnomer apportions blame and responsibility to the young person while simultaneously diminishing their genuine distress.
So, with refusal emphatically ruled out, what, then, should we call this? ‘Anxiety-based inability to attend school’ is nowhere near as snappy, even though this is much more accurate, and I have insisted on it being written in some of our daughter’s key documents. Much less clunky and equally accurate is ‘school-induced anxiety’, which has gained traction on social media in recent years and is the preference of most young people and their families. Importantly, ‘school-induced anxiety’ shifts the cause of the anxiety to the setting and removes the notion of fault from the young person.
My daughter – one of thousands struggling with school-induced anxiety – has lost half of her precious childhood to experiencing acute and sustained fear on a daily basis and viewing herself as a failure.
While we relate to those who embrace their refusal as an act of agency and punk ethos, we prefer to reframe “school refusal” as “school-induced anxiety”. We think this better reflects structural realities and avoids framing the victim as offender.
There is much debate around the appropriateness of the term school refusal. This gives the impression that someone has a choice around whether or not they want to go to school. For many autistic young people, it is not so simple, and might be more accurately described as school phobia. They are as able to return to school as an arachnophobe is to allow a spider to crawl over their hand.
When we reframe from deficit to structural ideology, we get to the roots of problems.
Many autistic people are highly driven, and really want to succeed, but if school becomes unmanageable, it does not matter how much we want to learn, we just can’t go. This can be for many different reasons including, but not limited to:
bullying
lack of staff understanding
inaccessible environment
work being either too challenging or not challenging enough.
Often it can be a mixture of some or all of the above. Tackling the root of the problem is essential for settling an autistic young person back into school, and it is important that the young person feels listened to and valued.
If it gets to the stage that the young person is unable to manage school, there are some dos and don’ts to bear in mind:
Do recognise that when an autistic young person tells you they are anxious it may have taken them a huge amount of courage to approach you. They have spent time thinking about the words they are going to use, the order to put them in, when is best to approach you, they will have worried about whether or not they are going to be taken seriously – coming and saying “school makes me feel anxious” is an enormous step for some young people, so it needs to be taken seriously.
Don’t be dismissive. We know that everyone feels anxious at times, but many autistic people have high levels of anxiety nearly all the time. We often need more help with it than others.
Do realise that high anxiety = more sensory sensitivity. The more anxious we are the more heightened our sensory processing is. This means that it may not take much for us to become overwhelmed with sensory input
Don’t treat it like truancy. Showing us absentee reports will compound that anxiety. Telling us how much we have missed is not useful and something we already know.
Do ask what can be done to make school more accessible. Not “what one thing can we do?”, ask about all the things that have made school difficult in the first place, and ask how you can work together to make things easier. Our Environmental Checklist and Sensory Profile may help with this.
Don’t assume that what has helped one other autistic young person will help another. All autistic people are unique in our abilities, sensory needs, how much social contact we need, how academic we are and so on. Treat us as individuals and recognise that your autistic young people may teach you more about what it means to be autistic than you already knew.
Do speak with the autistic young person about where they are most comfortable. Do they prefer working in the mainstream classroom, a quieter area with fewer students, the library, computer suite?
Don’t dismiss ideas out of hand. Just because it has not been done before does not mean it can’t be done.
Do ask how they are physically. How are their fine motor skills? Would typing be easier than writing? Do they need jotters with bigger lines to accommodate bigger writing? Do they need more time to get changed after PE? More time with exams? Do they need support from CAMHS or a counsellor?
Do check for co-occurring conditions. Autistic people can also have dyslexia, dyscalculia, dyspraxia, Ehlers-Danlos, depression, eating disorders, and many more things we can list. All of these can have an impact on whether or not we can attend school
Do deal with bullying. Autistic people are often bullied. Being fundamentally built differently means we are often viewed as easy targets for bullies. If you have a zero tolerance approach to bullying, ensure that is acted upon. Autistic people should never have to build resilience to bullying.
Do help us to “own” our being autistic and any accompanying quirkiness. Many autistic adults report that when they started to become more accepting of their own differences, they felt much better about themselves and boosted confidence. We cannot change the fact we are autistic, but we can learn to embrace being autistic.
Do check that the workload is appropriately challenging, and there is enough support to complete it. Check that we understand the point of doing the work. Due to our anxiety and need to do well, we may benefit from a little one on one time with a teacher regularly to ask questions, have work checked halfway through, or just check in emotionally.
Do ask about personal goals. What does your young person want to achieve? Where do they excel? Give time to work on personal goals. Allowing time to focus on writing, photography, football, whatever it is that the autistic young person does well will help.
Do consider who should be at the meeting. Lots of input from different professionals could be useful, but will it make the young person less likely to contribute? Who is the young person comfortable with? Where in the room are they best to sit? Is it a good time of day?
Most importantly, be patient and don’t blame. Meetings to sort these issues out may take longer than others, you may need to have several meetings about it. Ensure the young person has access to school work and that all options are explored.
“I think our children have been holding a mirror up to us – the life we are asking them to live, the expectations on them, the pressures on them.” This isn’t just an argument about attendance – in part, it’s about the nature of childhood itself.
Take a walk in our shoes. The video below is a powerful and moving account of what we go through in school.
Walk in My Shoes
This powerful animation reveals that the barriers and solutions lie not within the young person, but in the school environment, its ethos and in peer and teacher relationships and attitudes.
Erin’s personal narrative exposes the reality of the anxiety, pain and distress she endured, and that are somehow overlooked, misunderstood or neglected by those around her. Crucially it shows how she perseveres in attending, despite being left alone to navigate the daily assaults on her senses and sense of safety, in the knowledge that it will all repeat tomorrow. This is courageous – but exhausting.
Erin’s experiences shine a light on issues beyond her control that could be resolved by others; by listening and by showing they care. She could not have done more. Telling young autistic people struggling to attend school to be more resilient is profoundly inappropriate, if what you are really asking is for them to keep going under circumstances they should not be asked to endure. We need to change the circumstances.
What schools need to do is to understand autism. In understanding it, we can help to stop putting the children in pain and exhaustion. It’s actually quite easy. And quite cheap.
Make sure your school is getting really good autism training, from autistic experts and our allies.
Make sure the school are getting really good consultancy advice about children, way before any crisis, from autistic consultants and allies.
Notice I said ‘autistic experts’ and ‘autistic consultants’. People who can detect what’s happening in that environment, using similar sensory systems to the pupil. People who can explain autistic language and culture. Yes, there is a different autistic language, a different autistic culture. In the same way as it’s important to respect the culture of children from different ethnicities, it’s important to know about, and respect, autistic culture and communication style also.
For me, it is not the child’s responsibility to sort out the utter mess that the adults have made of their school life by not understanding autism. It is not up to the child to just be ‘more resilient’.
As @mum2aspergirl points out, the problem is not centred within the child. For me, it is not the child's responsibility to sort out the utter mess that the adults have made of their school life by not understanding autism. It is not up to the child to just be 'more resilient'.
— Ann Memmott PgC MA (She/They) 🌈 (@AnnMemmott) July 12, 2022
Listening to @mum2aspergirl at #LondonVirtualAutisticConference looking at reframing the narrative around so-called 'school refusal' and highlighting what needs to change in the environment in order to make schools a place of safety for autistic learners.
In fact, for Liasidou (2012, p.5), the concept of inclusive education, if it is to be meaningful, is necessarily founded on the social model, as it ‘refers to the restructuring of social and, by implication, educational settings in order to meet the needs of all learners irrespective of their diverse biographical, developmental and learning trajectories’. Within this framework, we are not expecting autistic children to change their very being or nature, but are aiming instead to ensure that the buildings, curriculum, classroom layout and teaching styles will be able to accommodate them. Therefore, this issue runs deeper than, say, providing a sensory room or differentiated learning materials, but impacts on all aspects of how an autistic child is perceived, addressed and supported. This approach can be facilitated through ‘universal design’ (Liasidou 2012; Woronko and Killoran 2011), where every aspect of educational provision is planned from scratch to accommodate a diversity of learners. In this way, certain children are not identified as needing adjustments or adaptations, but the core design of the curriculum, classroom layout and buildings means that all learners are more naturally accommodated – idealistic, perhaps, but surely worth a try.
Terzi (2005, p.446), for example, is of the view that the medical model as played out in educational environments results in ‘perspectives emphasising individual limitations’ rather than the ways in which the organisation and design of schools might create those very difficulties in the first instance.
This is a great time for everyone involved in education to understand #neurodiversity and what it means for the classroom, for learning and for inclusion. Launched today is the #LEANSproject handbook, for teaching about neurodiversity at primary school.
We’re at a point where the educational establishment is more and more taking the concept of #neurodiversity seriously. The @gtcs published a professional guide to neurodiversity for teachers in 2020. The message is filtering through, slowly but surely…
Still – the neurodiversity movement goes on picking up momentum. The idea that brains can be different, but okay, is powerful! Assuming everyone thinks much the same never worked very well. People are listening to neurodivergent experiences, and learning.
The more people understand neurodiversity, and learn to appreciate and accommodate it, the less need there will be for things like the @_MissingTheMark podcast and comics… It’s not that kids *refuse* school so much as that schools refuse to understand.
@MxOolong
Making education work for the next generation of neurodivergent pupils (no Q&A)
Self-Directed Learning
At one meeting I attended, one father told us how his eight-year-old son had been declared ineducable, and they had been told that he would have to spend his childhood at a psychiatric day hospital rather than at school. Another told of how his teenage son had hardly left his bedroom for two years, completely refusing to go to school, and had tried to kill himself. One mother told of how her daughter fought each morning not to go to school, scratching and biting them, for over a year.
These children are now members of the self-directed learning community, engaged in a wide range of activities. They are still the same people as before, with the same characteristics, but the pressure has been lifted and so they are able to flourish. Many of these children will have diagnoses. Home-educating parents tell similar stories – children whose behaviour at school was uncontrollable who start to behave differently ethey are allowed to follow their interests and are treated with respect.
Something happens when children are in an environment in which they are valued and accepted for who they are. They see themselves as capable and as contributors to their community, and they develop and learn. That’s why the respectful and non-judgemental way that adults relate to children in self-directed environments is important. It doesn’t happen overnight. When you’ve spend years fighting a system, you can’t just forget all the strategies you learnt to survive.
These children are experiencing the shift from a system which sees their personalities as a problem, to one which genuinely accommodates difference. Because when children are really allowed to choose what they do, difference stops being such a problem.
Viewed through the lens of disorder, disruptive behaviour is a symptom. Viewed from a different perspective, it’s a sign that something isn’t right in the world around the child. It’s those children who are considered to be troublemakers, the ‘problem children’, who shine a light into corners which the rest of us might prefer to avoid.
The problem is the inflexibility of our system, which prizes attendance and test results over emotional wellbeing and flexibility.
When I tell people that I work with children and families who have problems at school, they often nod and look sympathetic. ‘Bullying is terrible’, they say. Yes. It is, but it’s not bullying I hear about most. Here’s what families tell me. (with @_MissingTheMark) 1/
I talk to mothers whose children tell them every night they don’t want to go to school tomorrow – and when they tell the school, they are told they must keep bringing them in, or else the children will get more anxious & they might be reported for truancy. They feel stuck. 2/
I talk to children who tell me that the noise and smell of the dining hall hurts them, and the chaos of the playground frightens them. They’re doing okay academically and so school says there’s no problem, just keep coming in. 3/
I talk to young people who are furious about rules controlling every part of their lives which have nothing to do with learning – hair styles, silent corridors, black-shoes-not-trainers and wearing a blazer on the way to and from school. If they refuse, they are ‘disruptive’. 4/
Many of these young people keep quiet at school. They only show their anger and frustration when they feel safe, at home. They explode, and their parents don’t know what to do. They wonder if it’s their fault and if school is right and it’s a problem with boundaries. 5/
Families tell me they feel under pressure. Pressure because their child isn’t happy. Worry that they’re going to lose their job because the school calls so often. Pressure from others who say ‘a child of mine would never get away with behaviour like that’. 6/
Pressure to conform to the way that parents are meant to be, so they can get help from the system. Pressure to be compliant, to be calm and positive, in case someone writes ‘mum is anxious and reluctant to let child go’ in their report (this does happen). 7/
Parents tell me what it’s like to be the one taking the walk of shame back across the playground with the child who won’t stay today. They tell me how blamed and judged they feel, and how they avoid other parents in case of questions which just might lead to tears. 8/
They tell me that all the rhetoric about attendance makes it worse, because they are portrayed as feckless parents who can’t be bothered to get their children out of bed, when the reality is that trying to get their children into school takes up every bit of energy they have.9/
I worked with one little girl who told me she felt like school was a cage. She was an animal trying to get out. She ran away, got brought back and then she had in-school suspension, sitting in the headteacher’s office. That didn’t make her feel any better about school.10/
I talked to a young person who had cerebral palsy and who found school very difficult. He was enrolled in an online scheme during covid and was so excited to do maths and English – until the edict came that things must ‘return to normal’ and everyone had to attend in person.11/
The more the pressure piles on, the worse things become. Families start to buckle under the strain – and still the answer is to keep pushing, no matter what the fall out. 12/
This isn’t the fault of schools or teachers. They’re in an impossible situation too, under pressure to get results, to teach the curriculum, to manage behaviour, to maintain full attendance. They too are pressured in all directions. 13/
The problem is the inflexibility of our system, which prizes attendance and test results over emotional wellbeing and flexibility. Which doesn’t start with what each child needs to learn, but with a set of hoops they need to jump through. 14/
We need to put flourishing at the centre of children’s lives. We need to stop asking ‘how do we make this child go to school’ and start asking ‘how do we help this child learn?’.Only then do we have a hope of an education system which works for all. We surely owe them that.15/
We are marginalized canaries in a social coalmine and Rawlsian barometers of society’s morality. It is deeply subversive to live proudly despite being living embodiments of our culture’s long standing ethical failings.
Our non-compliance is not intended to be rebellious. We simply do not comply with things that harm us. But since a great number of things that harm us are not harmful to most neurotypicals, we are viewed as untamed and in need of straightening up.
