A YOUNG man, Sebastian Sands, will soon be starting a year with a monastic community (Features, 6 July). He is 19, and the subject of a video, A Place to Belong, which was shown at Lambeth Palace last month, for a conference on how disabled people could be better enabled to participate fully in the life of the Church (News, 20 July).
In the video, Mr Sands articulates the feelings of anxiety, and of “not belonging” and being “in the way”, which made him, as an autistic person, decide to seek answers in the Church. He was fortunate in finding the Revd Jeremy Dowding, in whose church he began to volunteer, and whose welcoming congregation helped him to realise his desire to “serve God and do some good”.
“I have to be me, and he has to be him,” Fr Dowding said. There’s probably no simpler articulation than that of best practice.
Another young autistic man, Gus Hardy, a Jesuit volunteer among disadvantaged people in the United States, has recorded his struggles, his experience of faith, and his strong desire to serve. He had felt the presence of God on a Christian retreat, and attributes a social advancement far beyond what doctors thought possible to the emphasis on self-reflection which is a component of Ignatian spirituality.
“Looking back, I find it remarkable that I believed in God to begin with,” he writes in the Jesuit magazine America. “Autism is a condition that does not allow for many grey areas in one’s worldview. People like me see the world through logic more than emotion, and draw more on rationality than anything transcendent. . .
“When I read of the vision offered by the Church of a ‘world charged with the grandeur of God’, there was no going back. . . This belief in ‘something more’ is the main reason that I have come as far as I have, socially. Because I realised that there was something greater than me, a higher standard to hold myself to, I could also strive to meet that ‘higher something’, and I have done my best to do so since.”
He refuses to be defined solely by the limits of his difference, or to be known for the rest of his life as “the autistic guy who did well”.
THERE are estimated to be nearly a million people with a form of autism in the UK. It is likely that there are 80 in the average parish. Not all will be in church, but, like everyone else, they will be attending weddings, funerals, and other offices. Autism is not a mental-health condition, but a physical brain-wiring difference that, in the context of church worship, means, “Our brain wiring can literally overheat as it tries to handle too much input at once. We try very hard to avoid an overload of sensory or social situations.”
That explanation comes from the words of the C of E’s excellent guidelines on autism, ‘Welcoming those on the Autistic Spectrum’, which were created for Oxford Diocese and formed part of the Opening the Doors report, affirmed by Synod.
DIOCESE OF CHELMSFORDSebastian Sands at St Michael’s, Thorpe-le-Soken, in Essex
Their main author is Ann Memmott, former adviser to the Archbishops’ Council and a former vice-chair of the Advisory Board for the Government All-Party Parliamentary Group on Autism. She is a trainer and consultant, business entrepreneur, is working towards an MA and is currently providing expertise for a book on the theology around neurodiversity, co-written with the Methodist theologian, Helen Tyers.
Most importantly, she is herself autistic. As a child, she was non-verbal. Through persistence and determination, over 20 years, she taught herself to speak. Devouring authors such as Desmond Morris, the author of The Naked Ape, helped her to make sense of human behaviour. She has always had a keen interest in faith work: she “knew God was there” from a very early age, and was blessed, she says, in the visual imagery of Jesus and the Holy Family around her family home.
She is a warrior in the battle to bring to the Church a modern understanding of autism. Old myths and old models prevail, and, while there has rightly been concern about provision for those in residential care, she emphasises that “the other 98 per cent of us are already in church.” She is thankful that myths associating autism and criminal behaviour have been debunked, together with many other perceptions that, she says, are misguided.
Nicodemus was almost certainly autistic, she reflects. “When Jesus tried to explain [being ‘born again’] in suitably metaphorical terms, he was, of course, completely confused by it. But he remained a follower of Jesus to the end.”
She reflects: “Everything is possible with God. There’s so much of faith that, whilst it’s lovely to consider it in mystical or spiritual ways, a lot of it is also about making sure that people are fed and watered. That’s all part and parcel of what Jesus asked of us.”
Autistic people drawn to a life of faith are “some of the most faithful people you will ever come across, because, once we connect on to something, that’s it: we’re in it. It would be difficult for us to see it as whim, and then walk away.
“So many things can be brought from autistic passion and focus. We have people whose skills levels in such things as memorisation of texts and knowledge of regulations are big strengths to a body like a PCC. And some of the best campaigners around social justice are people with autism. They do their research, and are persistent enough to make us keep looking at the problem.”
Autistic people can flourish in a wide variety of different church environments if they are properly matched to them, Mrs Memmott says. “Some appreciate the apparent lack of structure, the engagement and excitement of the lively Evangelical end; others need the Anglo-Catholic structure of the set ritual and set liturgy. You can’t get churches to change [churchmanship] because someone autistic has turned up, but there are simple changes that can realistically be done with just a few quid.”
THE guidelines (illustrated with cartoons by Dave Walker) set out clearly the kind of overload that someone with autism visiting a church can experience. Being given “two hymn books, a service sheet, and a selection of other random pieces of paper. . . So many chairs to choose from, and I have no way to decide which is correct. . . In front of me, people who apparently know me. . . Now the Vicar asks us to ‘share the Peace’. . . I am suddenly given a plate with money on it. Do I take some? Put some in? How much?”
DAVE WALKERAn illustration from the diocese of Oxford’s guidelines on autism, Welcoming Those on the Autistic Spectrum
Good practice can address all these things with what the guidelines say requires “nothing other than a bit of time and thought” — always in partnership with the people concerned. Fiona MacMillan chairs the Disability Advisory Group that works at St Martin-in-the-Fields, in London, which, in partnership with Inclusive Church, puts on an annual conference on disability and church. It is an opportunity to share learning and resources more widely, particularly evident in the booklet Calling From the Edge, launched at the General Synod in February.
“St Martin’s is a learning organisation,” she emphasises. “All our work is centred on lived experience: the experts are people who know, who encounter barriers and discrimination in daily life and in this place. We create change by understanding our different perspectives and working together to make things better.”
Whether characteristics associated with people with autism are perceived as positive or negative depends on context. “Understanding language literally is a challenge for those who don’t, but may encourage a clarity of thought which benefits all,” she reflects. “Wanting to know how things work doesn’t necessarily mean not appreciating mystery, or not being transfixed with wonder and delight at how things are.”
She lists among the characteristics of people with autism: “Honesty, integrity, directness, openness, creativity, different ways of perceiving, not being part of hierarchy and bureaucracy, not able to manipulate or discriminate. . . Loyalty, trust. Many autistic people have an inbuilt faith, unquestioning knowledge of the existence or presence of God.
“Having a passion for justice, spotting patterns, and noticing gaps or anomalies — including those who are left out or facing barriers to participation — are gospel values. Every church will have autistic people: some will have found their niche; others may not be open. It’s about acceptance of each other, openness to difference, acknowledging that one size doesn’t fit all, but we are all fearfully and wonderfully made in the image of God.”
BEING open about being autistic is not always something that members of the clergy dare to be. One cleric, who asked to remain anonymous, encountered discrimination and lost their position after disclosing a diagnosis, having struggled with the relationship with a superior who was unaware of the complexities and needs of someone with autism.
The diocesan disability adviser (DDA) proved very supportive, and, in a climate sometimes of ignorance, fear, stereotyping, lack of understanding, reluctance to take time to listen, and “a feeling that things are likely to go wrong”, the cleric highly recommends seeking support from such an adviser. Post-ordination training should always, in that cleric’s view, cover subjects such as accepting difference, understanding how discrimination can develop, and learning how the Equalities Act should be applied in the Church.
The Bishop of Huntingdon, Dr David Thomson, has had the opportunity to minister to people with disabilities, including people with autism, for most of his working life, and is now working to do more structural things within the diocese. A seminar, with Ms Memmott, for lay and ordained ministers has been held. Ms MacMillan and her colleague, the Revd Jonathan Evens, will be holding a training day, “Unlocking Gates, Opening Gifts”, for the diocese of Ely, in the autumn.
HEREFORD CATHEDRALStanbury Chapel at Hereford Cathedral, “a safe space for people to retreat to if they feel overwhelmed”
It is important, Dr Thomson says, that the Church positively welcome those who are different, and “see value in giving ourselves to their situation, knowing that they will give themselves to us. It reverses a dynamic where we are transactional with one another, which is ‘What can I get from you? . . . And, if I get enough, then perhaps I will allow you to get something from me.’ This is a model where each person takes joy in giving to the other person, and delights in one another.”
He sees a connection between this mutuality and the Trinitarian theological term perichoresis: “It’s the dance of the Trinity, in which each person of the Trinity is going round the other one, so that the actual DNA of God is always to be in community. It’s a lovely model of the Church. I know we have a history of viewing people with differences in a very negative way, and feeling threatened by them. It’s good for us to be paving the way for building a God-shaped community here.”
There are people with many learning styles to be found in congregations, he says. “I’m sure I’m guilty, as a preacher, of perhaps staying within my own comfort zone, my own groove. It’s really helpful if people say, ‘Can we have a bit less theology in there?’ or ‘Can you explain that a bit more?’
“So, if I’m off on one of my fancies in preaching, using metaphor on metaphor and simile on simile, I need to stop and think and tell myself, ‘David, you’ve lost yourself, let alone the congregation and some on the autistic spectrum.’ There’s a particular need, perhaps, for some of the people on the spectrum, but what it alerts us to is something that is good for all of us to be doing.”
STATISTICS collected in Oxford diocese — where research has been carried out for the past eight years — will confirm that churches that are autism-accessible are growing at a phenomenal rate, Ms Memmott says, “and not just from autistic people, but from being accessible. People can get in there, knowing they can move around without colliding with each other, and, all of a sudden, they relax.”
Good things are happening, too, in places such as Hereford Cathedral, where the Autism Quiet Hour — now simply called the Cathedral Quiet Hour — is in place. Hereford’s Accessibility Officer, Sarah Hollingdale, describes how a participant in a focus group on accessibility (part of the Heritage Lottery Fund Eastern Cloisters Project) explained that what she loved about the cathedral was the calm and the peace — but, she said, it was frustrating that the quiet times were hard to predict.
The cathedral held its first Cathedral Quiet Hour two weeks later, as part of Autism Awareness Week, and won wholehearted approval from the Chapter. “We actually do very little,” she says. “The joy of the Quiet Hours is that visitors are free to come in and to remain completely anonymous if they wish.
“We do, of course, provide resources which will be helpful to people on the autistic spectrum, such as ear defenders and maps. The maps have been specially designed to mark all our chapels clearly, as they function as safe spaces for people to retreat to if they feel overwhelmed. And our local National Autism Society office also helped us create Social Stories [comic-strip conversations to help people with autism develop greater social understanding] for people to read before they come, and these are available on our website.
“The ease of putting on these Cathedral Quiet Hours cannot be overstated; yet the difference it made to our local community was fantastic. We also discovered that they were appreciated by those who struggled with sensory overload for other reasons.
“Peace and quiet is something that churches often have in abundance. Sometimes, we overlook how valuable that quiet is, and how much it is appreciated by those on the autistic spectrum.”
Calling from the Edge is available as a free download: www.inclusive-church.org.
Oxford diocese’s guidelines, “Welcoming Autistic People into the Church and Community”, can be found at www.oxford.anglican.org.