Autism – it’s not all about genetics

What I was told at diagnosis – that autism is an inborn genetic disorder – has been debunked in recent years

Tue, Mar 18, 2014, 11:59

It’s time to get Caoimh, my intensely autistic nine-year-old son, to bed. He runs around hyperactively, screeching and shouting. (Severe verbal dyspraxia means that the few spoken words he has are unintelligible to most people.) He rushes at his 12-year-old brother, Fiach, and slaps him hard on the back. I tell Fiach to run upstairs and lock himself into his bedroom.

Furious, Caoimh chases Fiach up the stairs and kicks his locked door. His screams are nerve-shredding. I don’t want to give him more painkillers – he’s had two doses already today – but I don’t know what else to do. I give him melatonin as well, to help bring on sleep. He throws himself onto his back and thrashes. I cushion his head to prevent him banging it off the floor.

He pinches his thighs and stomach, hard. His legs and torso are covered in at least a hundred self-inflicted bruises.

Defiant opposition
When the painkiller blurs the pain, Caoimh stops self-harming, but he’s still angry.

Tooth-brushing and toileting requests incite defiant opposition. Frantic, he grabs me and pulls me to the ground. When I stand up, he runs at and pushes me, and I narrowly avoid falling down the stairs.

At this point I make the decision that the safest thing to do is to drag him along the floor, kicking and screaming, and lock him into his bedroom.

Caoimh rages in his room, beating the door, roaring and crying. I go to Fiach to comfort him. Eventually Caoimh becomes exhausted. His shouts reduce to whimpers. I unlock his door and coax him into bed.

He weeps and signs to me that he needs to be hugged. I lie down beside him, holding him as he cries, until finally, close to midnight, he falls asleep.

I’m awoken at 5.30am by the sound of Caoimh moaning. Before he’s had breakfast, before the first dose of painkiller has kicked in, he’s banged his hands many times off the sharp edges of the table, and stamped his legs hard into the floor, over and over again. He’s so agitated he can barely sit down, unless distracted by a DVD. This behaviour continues in Caoimh’s special school, where they have a “pinching” scale of one to five. One indicates “pulling at clothes”, while five is “causes bruising to himself and others”.

We’ve been coping with this horror on and off, but increasingly on, for two years. Needless to say, Caoimh’s learning has plateaued. A string of professionals – including GPs, a paediatrician, a paediatric neurologist, a dietitian, a psychologist and behaviour analysts – have been unable to help.

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