“Don't say the wrong thing. Don't stare at people. (But don't forget to make eye contact!). Don't laugh at the wrong time. Don't speak too loudly or too softly or too often or too infrequently.”
This is how Cynthia Kim, an autistic writer, describes how all-consuming and exhausting social interaction can be for autistic people.
It’s worth thinking how that affects the experiences of pupils at school.
Quick read: Autism: ‘If only I knew then what I know now’
Quick listen: Three golden rules for supporting autistic pupils
Want to know more? Look beyond the label
It’s a sobering thought that autistic children are 28 times more likely to think about or commit suicide.
They report experiencing rejection from peers, which can leave them feeling misunderstood, out of place and unwelcome.
These experiences can become internalised, resulting in children coming to dislike and devalue themselves. This can then lead to depression and despair.
Investigating autistic children's isolation
Yet we know very little about how staff in schools understand the way autistic pupils think and feel. With colleagues at Sheffield Hallam University, I carried out research to explore this.
We talked to groups of teachers and other staff in four schools: a special primary, a special secondary, a mainstream primary with an integrated resource and a mainstream secondary school.
Diagnosis is a complex issue. If children are not described as autistic, then often they find themselves labelled as “odd” and “weird” by their peers. They are excluded from both the autistic and non-autistic communities.
We also found that developing a sense of self can be challenging for autistic pupils who have not received a diagnosis or whose parents have decided not to share their diagnosis with them.
One staff member in the mainstream secondary school spoke of the frustration in this situation:
“We've got a child in Year 8 who at one point said, ‘What is wrong with me then? Why am I different?’ We can't tell them though.”
But a diagnosis can have its downside, too. For some children and young people, this can become an all-consuming identity.
As one staff member from the mainstream primary school with an integrated resource said: “They believe everything is to do with Asperger's rather than [the fact that] everybody feels upset sometimes.”
Staff from the special secondary school also reported that autistic students’ sense of being different was often compounded by the messages they received from the education system.
One told us: “If they've been in a mainstream primary, they get separated straight away and told they are very different and they are special...it's true but I think it also probably gives them that sense that, ‘I have to be removed from everyone else.'”
Our research found that the most important factor in developing a positive sense of self was pupils coming to know, accept and value who they are. The staff we spoke to felt that more guidance was needed in schools on how best to do this.
A forward-looking framework
And so we’re using the insights we have gathered to create a framework for the development of a positive sense of self (and although our research was focused on autistic children, this framework can offer support to all pupils). We now need to work with education staff and other stakeholders to expand it.
We have started this process by talking to some autistic adults. They tell us that some important points are:
1. Develop a culture that celebrates difference and promotes helping each other to navigate the world of school.
2. Ensure staff notice and really come to know autistic pupils and how they experience school.
3. Communicate with autistic pupils about what could make school better for them.
4. Help autistic pupils to connect with autistic peers who may share the same interests and/or benefit from being together. They could connect physically within school, through across-school clubs or virtually.
5. Link those autistic pupils who would welcome it with a non-autistic peer who can act as a guide to explain confusing social situations and advise on who seems to be a genuine friend.
As researchers, we feel it is vital to know what education staff think. The staff we spoke to understood some of the key challenges for autistic pupils.
But schools need more back-up in tackling those challenges, and we hope that our framework is a start to developing a new approach that can help them on that journey.
Nick Hodge is a former teacher and now professor of inclusive practice in the Sheffield Institute of Education at Sheffield Hallam University. He tweets @goodchap62