A million autistic people in the UK.
As we know, it's a brain design, built for accuracy rather than instinctive people-skills, and we have to work hard to learn social rules. Honest, caring and gentle folk who can bring much to every group we are part of.
Some 860,000 autistic people will go to church at some point during the year. Maybe as a regular member of the congregation. Maybe as the church leader. Perhaps as the organist, or treasurer, or one of a hundred other roles. Some will attend weddings, funerals and baptisms as guests. Some will attend fetes and events at the church.
Every parish will have an average of 90 autistic people in their area. Most may be very wary of announcing their presence. Some may not realise they are autistic at all, of course. Unfortunately, if there's a single one who is more 'lively', they will be the focus of attention rather than the 89 quiet individuals who get on with things unnoticed. Well, mostly, the 89 others who try turning up to church, get really bewildered... or find they are facing sensory or social overload... and may retreat in dismay.
The Church of England has good resources for welcoming and including everyone on the autism spectrum.
It is vital that every church leader, every youth group worker and every voluntary group leader has a good basic understanding of autism. Every single group will encounter someone autistic at some stage.
There is nothing very complicated about including us. Once people realise that our brains see and hear too much detail, and need time to process it all....and time to recover from the incoming information, it's easy to work out what will help. It's also almost cost-free.
Many groups know that they need to include those with hearing impairment, for example by providing written materials, a hearing loop, perhaps a sign language interpreter.
With autism, there is the same requirement under the Equality Act 2010 to make sure we can access services and events, without a struggle and without embarrassment, or anger about us asking.
There is a legal duty for all leaders of groups to plan ahead. Even if they aren't aware of anyone autistic in their group, they must have a cunning plan for accommodating disabled people. Sometimes people get quite panicked about this, and wonder if it means they have to anticipate every single need of every single person in advance. No. But they do have to plan for the basic needs of the basic disabilities; wheelchair/mobility needs....hearing impairment needs....visual impairment needs....learning disability or reading difficulty needs....and autism needs. Those are the 'big disabilities' that everyone should have as a basic list.
Knowing about other disabilities too is of course important, but it's reasonable to plan mostly for the most common ones. Then fill in the detail on the others when needed.
So...plan ahead. With autism, think ahead to where a quiet room or space could be. Check whether there are fluorescent lights at the venue and see if there's a venue that doesn't have them. (They flicker and cause difficulties for lots of autistic people). Check whether anyone is planning sudden loud noise as part of the event, and warn of this in advance. If you know there's an autistic person attending, be prepared to give them advance info on venue, timings and that quiet room location. Ask them what would help, and be prepared to give extra time for answers to that question. Some will appreciate you finding a 'social story' about going to church. This is a picture guide to what will happen. A basic one can be obtained and printed out, or customised to the service or event. Help is available. Some will prefer to answer in writing rather than in conversation. Don't think this is some threat by 'putting things in writing'; it's just that some of us aren't good with using spoken language, and need thinking time.
Don't mock autistic people or our mannerisms, please. Don't leave us 'till last or allow leaders to pretend they are too busy to help us. Don't try to make us pay for disability-adapted materials we may need. Any of that is illegal and leaders don't want to be doing it. It's also something that makes autistic folk very sad; lots of us love being with other people and really want to learn about God and be part of our church communities. Many are very lonely because of our difficulties with social skills, and appreciate a chance to be part of something so amazing. It's a real sadness when we're met with a closed door and a "I'm too busy" email back. We're not scary monsters. We're people like you, with interests and emotions and needs and talents.
Get good advice. There's loads out there. The internet is awash with handy info. You have the main guidelines at http://www.oxford.anglican.org/wp-content/uploads/2013/01/autism_guidelines.pdf as a starting point.
And enjoy. Autistic people are honest, truthful, brilliant quirky friends, and each is someone loved and cared about by God. Get to know us, and get to find out what gifts we can bring to your group and to God's presence.
Monday, 2 February 2015
A perspective from an adult with autism, who has brought up a fab son with autism, and works as a national adviser on the subject.
Autism is a brain design difference that appears before birth, and stays with us for life. Generalising in all I write here, our brains are built for being specialists on subject. They’re ten times more accurate than those of others. We’re very logical and honest, with a quirky but amazing sense of humour and strong loyalty. We can see detail and pattern that you cannot see, and hear extraordinary detail from the world around us. Autism has positives.
It also has negatives – because we’re living with a brain can’t filter stuff out properly, and can’t see people properly. You know how Blind people are those who cannot see because not enough light can get to their brain in ways that make sense to it? And Deaf people cannot hear, because not enough sound can get to the brain in ways that make sense to it? Ours becomes ‘blinded and deafened’ by ordinary everyday things. Why? Because it takes in too much information at once. Think of a restaurant. You can hear a conversation from your companion, yes? We probably cannot. We can hear every conversation in there, all at once. It’s a wall of noise. We can’t see body language properly, or face expressions. Eye contact actually hurts most of us.
Sooner or later, our brain wiring overheats from all that input. It becomes confusing, and painful, and scary. We desperately need to avoid this. If it does happen, we desperately need a really quiet place to let it cool down.
We also need really clear, short instructions from those around us. We’re very literal, so if you tell us to ‘pull our socks up’, we’ll probably do just that. Then we may wonder why you think we’re being rude. If you tell us to do the work ‘on the table’, and we get on the table, we’ll be puzzled when you get angry. It’s what you told us to do. Many of us are visual thinkers, not word-thinkers. Pictures may really help. Do ask.
We also struggle to hear your voice tone. If you say “I didn’t say you could eat that cake” or “I didn’t say you could eat that cake”, both things may sound just the same to us. Emphasising particular words is not handy. Say what you mean by using a different sentence instead.
Because we are trying so hard to avoid brain wiring overload and the pain that goes with it, we need advance info. We’re trying to calculate social interaction overload....and sensory overload. Are there going to be crowds of people all wanting us to hear them ....all wanting us to do eye contact (which hurts us), etc? Are there flickering fluorescent lights overhead that seem like a strobe light to us? What about massive background noise that others can filter out? You can’t see or hear what we can see and hear. Same with overwhelming smells in a room, or rough textures. Things can also be fascinating for us that you would find totally boring, because of our sensory differences and our extreme specialisations and interests. And we cannot see if you are happy or angry or bored. You have to say.
So it’s different, working with us. Different can be very good. But so often people think we’re just being rude. We’re not. We’re trying to be friends with you, but in a world that is so overwhelming at times. Our accuracy and sensory skills can be a great advantage for many things, given a chance.
Be patient. Ask what helps. Chat to us in short clear sentences. Sit alongside us, not opposite us. Give us a chance to think about our answers, or use pictures to communicate with us. Make chat about something factual, not about our emotions, or random ‘small talk’. We may find random conversation very scary. Think about tone of voice – we may miss sarcasm or jokes. Be aware of sensory needs and find a quiet space for us to escape to if we need it. Say what you mean, and build that trust for us. Be accurate on timescales you give us, too; we’ll panic if you say, “I’ll be back in five minutes”, and you take seven. Or ten. Or twenty. Instead, learn to say, “I will be back soon –between five minutes and half an hour.” Be aware that we can find unexpected touch to be like an electric shock, so always ask and wait and be gentle and careful with a reassuring hand on a shoulder, etc.
It’s little things that make a huge difference for us. Autism is a wonderful and amazing thing to have, but it’s very specialised. Work with us in a way we can handle, and it’s always worth it.