“He’s not naughty, he’s autistic!”

by Ian Howarth.

This Christmas we made the usual adjustments to our lifestyle to welcome Mark, our barely verbal adult autistic son to stay with us over the Christmas period. We have to have a clear, written timetable that accounts for every hour of every day to reduce his anxiety, and a written order of service that he can see the day before means that he just about copes with worship on Christmas Day. Predictability, doing things the same every time, no surprises, are all essential to his wellbeing.

Given what I know about Mark’s pathological resistance to change, and the growing realization that autistic traits exist in a greater proportion of the population at large than used to be thought, I wonder if I need to temper my frustration at the unwillingness of so many churches to embrace change.

At a deeper level, we have had to confront the question of what personal responsibility a person like Mark has for their challenging behavior, and to what extent it is the ‘fault’ of his condition.

When he was younger and we took him to the shops, he would frequently lie on the floor screaming when things were not going his own way, and people would look at us, and occasionally call us to task for having such a naughty child, to which our response was: ‘He’s not naughty, he’s autistic.’ [1]

On bad days, even as an adult, the challenging behaviour can return, when expectations are not met, and we recognise again that this is behaviour to be managed and understood, and Mark is not to blame for it.

While the issues are clear for us in regard to our son, they lead to interesting questions about where personal responsibility begins and ends. To what extent is Mark personally responsible for his behaviour, leads to the question, to what extent is anyone personally responsible for their behaviour?

Current thinking on autism is that it is a ‘spectrum condition’, and that people exist on that spectrum from those like Mark, who are non, or barely verbal, with learning difficulties, to people who can be highly-intelligent, very verbal individuals, who display their autism through social awkwardness, but still with the same need for order and pattern in their lives. Some autistic people develop the self-awareness to manage their condition, but others, even some highly able ones, really struggle. Writers who are themselves autistic, talk of the need for the community at large to adapt to those who have autism, not the other way around, and it is important that we hear that, although it is not without its challenges, and the question of personal responsibility for one’s behaviour is never far away.

And where is God in this? In our Protestant/Wesleyan tradition we have emphasised personal responsibility before God, making the personal choice of a commitment to Christ. This month many of us will be remaking that commitment in our Covenant services. ‘I am no longer my own but yours,’ we say, and that personal promise of commitment remains immensely important in my own Christian journey.

But such a commitment would be meaningless to Mark and people like him. I know that the God I try to commit to, the God revealed in Jesus, is also committed to Mark. Any understanding of salvation being conditional on a personal relationship with Jesus as defined by a usual understanding of relationship would exclude Mark, and so is inadequate.

There are no easy answers here. I would like to be able say that it is in and through an accepting, inclusive community that we find a way forward, and I think that is an important starting point. However, many of those with autism struggle with community. In Mark’s supported living six individuals live individual lives, hardly relating to each other, except through their wonderful carers.

However, the questions raised by autism that relate to personality, personal responsibility and relationships can be seen as a gift to challenge us to reflect more widely and deeply on what it truly means to understand and express God’s all-embracing love.

[1] I know that in some circles, it is frowned on to say someone is autistic, and felt better to say that they have autism, or an autistic spectrum condition. However, the fact that Mark’s autism so defines who he is, and is not something he has in addition to his personality, and that those who are verbal are happy to describe themselves as autistic, means that I feel it appropriate to say, he is autistic. The phrase: ‘I’m not naughty, I’m autistic,’ comes from a badge issued by the National Autistic Society.