Autism: siblings 'have no idea how hard they have it'
'They have to deal with so much more than their friends", says Emma Dunne of her three "typical" children, aged 12, nine and five, who share their lives with autistic sister Tessa (7).
"She's a bolter so there are locks on every door and window in the house. She went through a stage of eating books so if library books came home from school you'd have the excuse, "Her sister ate her homework ... "
Canadian-born mam Emma is not just tough, she's also very funny. Which is nothing short of a miracle considering Tessa's condition, which has a huge impact on the lives of the other children: "She went through a phase of poo-smearing. Imagine you're 12 and you've got a friend home and your sister's smeared poo from one end of the room to the other."
She says the sense of the disparity between Tessa and other kids' siblings hit her two older kids when they were about seven or eight: "You're sitting in the cinema and you kind of forget it's inappropriate to eat popcorn off the floor. I mean, she's eating poo off the floor, it's not going to kill her. And the kids say to you, 'Would you not even try to stop her?'"
But while awareness of Tessa's ability to embarrass them is growing, her older siblings are fiercely loyal to her.
"Someone said in Isobel's hearing range at school, 'You're as retarded as Isobel's sister'. She ran up and kicked him."
The Sibshops, sibling support groups run periodically by Autism Ireland at various locations around the country have been a massive support to Emma's "typical" children. She attends in Drogheda.
"They should be running in every area. To be somewhere you can say, 'My sister ran around naked and had a wee on the floor'. There's no shame about it. They can tell each other, 'This is what I said when my sister did this or that'. The older ones can tell them it gets better."
But in truth the future is a place Emma is reluctant to go. She knows Tessa's care will "fall" to her other kids eventually, but she just hopes the services are better than they are now: "I hope Tessa would be minded and the others could pop in for a visit or take her for the weekend. I just have to think there will be supported houses, there will be respite. The new thinking is that the money should follow the individual – but where to? I didn't choose Tess to be their responsibility. But I wonder will they have the freedom to go off to Australia like their peers? And imagine marrying into that ... "
Autism is to a large degree an inherited condition and it runs through Emma's extended family. The hard fact is that it may turn up again in the next generation.
"I put my faith in science", says Emma. "I hope there will be embryonic selection. I know that's an ethical debate – but I'd just say, you don't live with it. I never want my kids to go through this. I would prefer my kids to have no kids than to go through this. You'd never want this for your kids."
Emma doesn't seem depressed, she just seems honest when she says, "You hear about a mother driving off a cliff with her children and you think – 'I get it'. That's such a telling thing that I get it."
Thankfully, her kids don't. Isobel was just four when Tessa was diagnosed, around the time her little brother Rory was born. Emma often looks at Rory and is grateful that she had him because if she had had Tessa's diagnosis earlier she wouldn't have.
With a new baby and a newly diagnosed autistic child, Emma gave up her job in the bank. Her husband James works in IT but, as Emma says, he can't do over-time and he can't even go for a drink after work because he has to come home to help out. She and James once lived very different lives but her kids have really never known anything else.
"They have no idea how hard they have it", she explains. "Everything they have to deal with is so much more complex than their peers. They all have their own rooms and they have locks on their doors. I say, 'Put your stuff in your room!' If Tessa breaks it I can't replace it. There are iPods in the toilet, iPads smashed. Devastating."
The house is, as Emma says, "designed by autism".
Tessa used to share a room with her sister but they had to divide the rooms because Tessa was bouncing on her sister's head in the night: "She's broken every bed she's ever had. Now she has her own room and two mattresses on the floor. She has a swing and a TV and when she wakes in the night she watches it."
Tessa has no speech and still wears nappies. Her condition constrains every move the family makes. "I can't manage large playgrounds with exits", says Emma. "I can't manage the beach. She would take off into the water with no sense of her own danger."
Emma still doesn't know how much Tessa's abilities may develop. An autistic nephew is currently doing the Leaving Certificate Applied.
"She understands so much more than she lets on. You see a glint in their personalities ... I never speak of her as if she isn't there. You see moments when you think, 'You do hear me'."
Still, some of the questions her siblings pose are hard: "Will Tess speak when she's eight? Will Tess ever marry?" But you'd have to say nature has a way of making up to kids. They have to deal with Tessa but they have Emma for a mother.
"I never want them to resent Tessa so I make a huge conscious effort to show up to all their events and they do a lot of clubs and activities. I probably do too much. But I never want them to look back at their childhood and say, "That sucked."
- Autism Ireland can be contacted on 044 9331609 email@example.com / www.autismireland.ie
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