I don’t stand up during the hymns any more.
I know that’s not much of a confession; it’s just that sitting and standing every five minutes isn’t exactly conducive to sign language, or to helping my autistic children stay calm. Standing up for the hymns is six or seven little transitions, and frankly, we don’t cope well with transitions.
That’s a pretty minor example of how things changed when I became dad to two boys on the autism spectrum. It’s about adapting – realising, slowly, that you have to roll with everything that’s being thrown at you rather than trying to fight it, and that, for your kids, success means something more than getting top marks in the SAT’s or having a shelf full of sport medals.
I’m not sure how much of this is evident to the people around me. Sometimes, with my cynical head on, it feels like there are three camps – those who care, those who don’t, and those who think they know it all because they saw Rain Man once. My boys cope with a hell of a lot incredibly well, all things considered. But it takes a lot of support on the part of my wife and I, and a lot of organisation, and sometimes it feels like we’re not just adapting to the autism, we’re also going to war with the world around us. We’re among the lucky ones. A lot of people in our situation don’t get to go to church, and often that’s the church’s fault, not theirs.
People say my wife and I do a good job – we do do a good job. But that doesn’t mean it’s easy, nor does it mean that there aren’t hundreds of hours worth of slog, stress and sleepless nights needed to get to the point where it looks like life is a picnic. And there are plenty of families out there who put in all that work but can’t go to church because circumstances just don’t make it possible, who don’t get to be part of a church family. And behind that may well be a hundred stories of heartbreak – of how a congregation couldn’t bring itself to accept the 10 year old who shouted out at random moments during communion, of how parents were held responsible for their daughter’s autism because they had her vaccinated, of how meltdowns were met with tutting disapproval or inadvertent shaming, of how much-needed support and resources and understanding just weren’t there.
That is, of course, on top of being yelled at and punched while trying to keep your head and fighting off irrational guilt that you’re not doing a good enough job, that if you just did something a little differently then your child would be able to calm and happy and not have to deal with the noise and confusion and the sensory overload. That’s on top of having to fill out endless forms that force you to confront all the negatives about your child’s situation without balancing it with any of the positives; that’s on top of having to become experts in teaching practice and neurodiversity and desktop publishing visual resources and interior design and government bureaucracy; that’s on top of worrying about what happens when the kids turn 18 and all the statutory support disappears overnight..
These things aren’t unusual – for autism families, it’s all part of life’s rich pageant, the hidden stuff that no-one tells you about when that diagnosis first comes through. It’s the stuff that doesn’t get talked about much; the stuff that you get to be honest about, occasionally, but most of the time goes unspoken because hey, you’ve just got to deal with it. If you stand still long enough to complain, life’ll run you down. And if you’re not careful, you risk ending up blaming your kids for all that, when really they need you to be their protector and their advocate, their mom and/or dad. And we don’t talk about it enough. I certainly don’t, but I’m starting to believe that desperately needs to change.
So, where does this leave the church?
Well, according to figures from the National Autistic Society, around 700,000 people in the UK are on the spectrum. Assuming each of those people have around three relatives actively involved in their lives, that’s 2.8 million people in the UK directly impacted by autism or, put another way, around 4%. So next time the church council is talking about being ‘missional’, maybe support for these families – and all the other families dealing with disabilities in one form or other – needs to be on the agenda. Because right now, a large proportion of people are being disenfranchised by the church and, put bluntly, that’s not exactly Christ-like. Pentecost is coming up – maybe all the languages we’ll be talking about then need to encompass, say, BSL or visual timetables. The Holy Spirit can use them as well.
(Now there’s a sermon illustration for a month’s time! You can have that one for free, worship leaders.)
What could churches do differently? There’s no easy answer to that – autism is a spectrum disorder, and so individual circumstances vary greatly. But I think it starts with acceptance. That’s the first thing with autism in general – accept the situation, accept the child with all their quirks and difficulties and behaviours. Accept that there’ll be noise during the sermon, accept there’ll be parents who can’t even think about the cleaning rota or the midweek Bible study. Don’t just say you’re accepting, because that’s too easy and we’ll see through it in seconds; actually be proactive and intentional about it, not because the autistic kids in your congregation are a project, or an issue to be fixed alongside the broken boiler, but because the church is meant to show love and compassion and grace to those around it, because we’re supposed to be interested in each others’ lives, because God loves and cares for the vulnerable and he expects us to do the same.
And be aware that children with autism are trying to process a million different inputs at once, the worship band and the talking and the gossip and the clinking of coffee cups and what they need to do and what’s going to happen at Sunday School and the crying baby and the squeaky teddy bear and the lights and the weather and what happened at school on Friday and drinking Jesus’s blood is disgusting (wait, it’s just grape juice, but they said it was blood!) and their heart rate is going through the roof and stress levels are rising, and then someone at the front gets up and laughs and says “Anything can happen now!” and suddenly the stress levels rise because no-one knows what’s coming next and it’s different to last week and something’s happening at the back and Daddy’s started coughing and everyone’s standing up and the band’s noisy and everyone’s sitting down and everyone’s standing up and someone moved the lectern and one of the commas on the overhead is in the wrong place and there’s not always something the church can do about this but please please please be aware that this is what’s going through that kid’s head so GIVE THEM A BREAK!
And stop being scared of the whole subject of disabilities, because we’re not called to live in fear, and there are sites that can support you. Don’t hide behind it “not being your calling”, because you’re called to go out into all the world, and so there’s no excuse for your accessibility to suck.
And don’t focus on praying for the autism to go away, because the same ‘wiring’ that means you have to turn down the volume on your rockin’ worship band because it’s giving a little girl sensory overload* also makes our kids awesome, people we love and cherish. It gives them different ways of seeing the world and that’s good because the world needs diversity – the church needs diversity, and that includes neurodiversity, because without it, hundreds of families will remain separated from the church as the result of genetic factors, and that’s a sin.
After all, who said the Body of Christ couldn’t have disabilities?
(More posts on disability and the church can be found here.)
*Okay, here’s a question – that issue comes up while you’re leading worship. Do you ask the band to turn down the music, or do you expect the family to just deal with it because the music takes precedence? Why did you give the answer you gave? And how do you think God felt about the subsequent act of worship?