The number of autistic young people who stop attending mainstream schools appears to be rising.

My research suggests these absent pupils are not rejecting learning but rejecting a setting that makes it impossible for them to learn.

We need to change the circumstances.

Walk in My Shoes – The Donaldson Trust

Take a walk in our shoes. The video below is a powerful and moving account of what we go through in school.

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.

Walk in My Shoes – The Donaldson Trust

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.

Mental Health and Attendance at School

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.

School Phobia/Refusal — Children and Young People — Autism Understanding Scotland

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.

School Phobia/Refusal — Children and Young People — Autism Understanding Scotland