The Gospel and Autism: my response to the Briefing article

On 2 April 2013, World Autism Day, The Briefing* published this article entitled 'The Gospel and Autism' by Lionel Windsor. Here's my response. Modified on Sunday 7 April.

Lionel Windsor made some true and marvelous points about the hope that Christians have, the perspective about disability and the value of all people, and the future we are looking forward to, with no sickness, pain and tears - a future where our children have meaning, life and fulfillment. He also makes good points about the forgiveness we have in Christ empowering us to continue on in loving our children.

But I reacted to one line in particular: "When we do suffer and watch our loved ones suffer, we don’t despair…"

Because I do despair.

I have despaired in the past. I will probably despair again in the future. Does that mean I don't have good enough theology? Does that mean I don't believe enough in what the Bible says? Maybe my emotions are wrong. Maybe I'm not a good enough Christian.

If I am, I know I’m not the only one. After I wrote Love Tears & Autism, my memoir about my journey through my son's diagnosis of ASD at the age of 3 (and believe me, there was a lot of despair in it), I was inundated with letters from parents who said, "I know what you feel. I'm exactly the same," or "I relate to everything. And no one else seems to understand."

Where does the despair come from?

It's easy enough to say the words 'Autism affects 1 in 100 children'. Newspapers say it all the time. What it doesn't tell you is the way it affects them. I'm talking about their daily (sometimes hourly) tears, tantrums, anxiety attacks, refusals and insults. I'm talking about their inability to be flexible, to roll with the punches, to understand themselves, to understand others.

I'm talking about the disruption to normal family life with things like screaming-shouting refusals to get in the car when everyone else is ready for a planned day at the beach, the inability to do most things spontaneously, the fact that a family can't all play a simple game of UNO together because one child Definitely Cannot Lose.

I'm talking about, in some cases, the violence towards other children. Or parents, brothers and sisters. Or the destruction of property. Or – and no-one wants to mention this little gem – the smearing of poo on walls and stairwells. And I'm talking about the social rejection and isolation and bullying that is the norm for even those children who are considered 'high-functioning'.

That's what it can do to the children. What it does to the parents and the siblings and the grandparents is just as serious. Many, many mothers (sometimes dads, but not as often) end up becoming housebound or isolated full time carers of incredibly difficult children.

Someone I know has a seven year old with ASD who cannot leave her side. Ever. She never gets a break. And if she does, she has two other children to love and nurture and feed, a husband to relate to and a house to clean.

The end results of ASD for families can be fatigue, depression, hidden bitterness, poverty (because therapy is expensive) and more often than not, never getting to make those joint family memories from holidays and outings and fun times that most families take for granted.

I'm the mother of a child with Autism. I had depression for two years. I deal with rudeness, refusals, fussy eating and being ceaselessly talked at every single day. And this is him doing well after nearly six years of therapy.

Despair comes from the everyday difficulties, the constantly empty emotional tank and from the death of the dreams and expectations we all have for our children. I've still got 40 years ahead of me dealing with the difficulties of autism. And then I've got the worry of my son outliving me. Who will take care of him? Will he be homeless? What will he do?

I hate the fact that the world is broken, that sin reigns. And I love the fact that heaven's coming. But I've still got to live here today, tomorrow and next year, with these circumstances that, yes, quite frankly, I often despair over. I'll be honest. It's hard. And I cry. And it's not just me. We all suffer and swear with anger and thirst for reprieve.

If the only reprieve is 40 years away, I'm not sure I can make it.

What does give me hope is the story of Mary and Martha – the other one, where their brother Lazarus dies and Jesus comes 'too late' to stop it.

Martha comes out to meet Jesus and they effectively have a theological discussion. She says, "Lord, if you had been here, my brother would not have died," and, "I know he will rise again in the resurrection at the last day." In other words, she knew the meaning of death and sin and sickness, and she knew what was coming. For me, this is the bit of the gospel that Lionel's article expressed.  It's true and it's important.

But the bit I really love is when Mary comes out to meet him.

She says exactly the same thing to Jesus. "Lord, if you had been here, my brother would not have died." Jesus sees her weeping and he is moved. And he does something that he does nowhere else in the gospels.

He weeps along with her.

God expresses very deeply and very deliberately his tears and sadness about the suffering of our children with autism and our families living with it.

Jesus weeps for suffering. And then he helps relieve it.

I'm not arguing for miraculous healing. (I've been down that route and you can read about it in my book.) What I think is more important is that the church, as Christ's body, needs to weep along with those who suffer. It needs to understand the suffering, to talk about it, to embrace it and not to minimize it. And then help to relieve the suffering.

That is how children and families with ASD, or indeed, anyone who suffers from a chronic grief or illness or mental condition, can get through the today and the next week and the next year. 

I look forward to heaven and I'm grateful for the way God is refining me through this gift of suffering, but it doesn't feel good. I depend on those Christian friends who help support me, who listen to my despairing words and who pray for my son. I depend on the medical practitioners and therapists (and both of our key people are Christians) who investigate autism and look into therapy and real ways to help children get better. I depend on the government to fund the hidden tsunami of autism and help find its causes.

And I depend on the fact that Jesus loves me enough to weep with me in my suffering. That's what will keep me going for the next 40 years.

I thank Lionel for his article, because it's not a topic that the church has wanted to talk much about up until now. I hope it will start a conversation and a revolution of care for the hidden suffering in our society.

*The Briefing is a leading evangelical magazine published in Sydney, Australia