It was a privilege for me to do this interview. Hassnain deals with some very difficult behaviour from his sibling (who has severe autism as well as a variety of other complex health issues). But what shone through during the interview was not tiredness or negativity, but Hassnain’s love and passion for his sister. He has some very interesting views on the challenges and the joys of autism…
Gwen: So Hassnain, how long have you been registered as a secondary career for T?
Hassnain: Ummm… I’ve been registered for two to three years now. I was registered as a secondary carer for T when my parents split up because my father was registered first and when they split up he just stopped caring. And I took responsibility… I became man of the house and she was the main responsibility. So… like, my Mum suggested we register you as this so I could go on appointments with her and talk to her school as well… ‘Cause, you know, I was telling you every time I go somewhere people ask ‘are you her father?’ *giggles* and I’m like ‘I’m her brother!’
Gwen: And whereabouts’ is T on the autism spectrum?
Hassnain: *shakes his head* As high as you can get. She’s got extremely severe autism but it’s not like classical autism because… Well her brain is backwards in the way it works… It’s hard to explain… she’s not you’re a typical autistic child. Everything that’s in the manual or definition of autism- she’s not. But she was still diagnosed with autism when she was really young- like three years old.
Gwen: So I understand T is nonverbal. How does she communicate her wants and needs?
Hassnain: *sighs audibly* ‘Where do I begin? I’ll try and bullet point this, it’ll make it easier:
- She’ll scream from the top of her lungs… that’s usually the first step.
- She pulls hair, both mine and hers.
- She’ll smack herself really hard *whacks himself on the head* like that.
- She strips off a lot… A LOT. And she puts her hands down her pants… it’s not nice.
- She shuffles along on her bum because she can’t walk… If you’re sitting on the sofa she’ll shuffle over and gesture to you and if she doesn’t get the attention she want’s she’ll scream till her lungs dry out.
- Sometimes she’ll get up from lying down and she’ll think ‘I want something’ but she doesn’t know what she wants. So she’ll go over to the wall and start banging her head against the wall, flailing her limbs and stiffening her body… She stiffens a lot. That’s quite scary ‘cause you don’t know what type of damage she’ll do to herself. She’s only little… she broke her arm recently…
- Oh! When she really wants to get someone’s attention this is the extreme she’ll go to… she will yank out her feeding tube and all this bile will pour out. That’s quite distressing to watch… It’s a crisis so you just have to go to her and clamp the feeding tube back in and clean her up. She’ll do it again…. I think she did it fifteen times in one day. It’s quite funny because we have a cat and when T gets distressed, the cat will go to her and assess her, then go to us and start biting and scratching us until we give T our attention.
- Have I mentioned the nappy throwing yet? *nods solemnly* The napping throwing. So when she’s distressed she’ll throw a nappy at us regardless of whether it’s empty or full of poo. And mostly it’s full of poo so we get a face full of poo.
- She has this big bag of medicine which we hide, but she always knows where it is… So she’ll go to the bag… Pull it out, like really pull, and throw bottles of medicine at us. She’s probably the most enigmatic character you’ll ever meet. Her doctor used the phrase ‘every complex needs child comes with a specific way to deal with them…’ With T there is no manual, no way to keep her calm. She rarely smiles. That’s quite difficult actually… Everything is care for her. She doesn’t have a job she doesn’t have a social life- but it’s the little things that get her upset, like one of us going upstairs. Our whole lives revolves around her… our plans, schedules, everything.
Gwen: How would you say your families’ dynamic has been altered by the presence of an autistic sibling?
Hassnain: Umm… do you mean like, what we do as a family? *looks confused* Ok… ermm… we’ll we have to stay up with her at nights, every night. Last night I was up at 4 am. She just wanted someone with her. And if you fall asleep on her she will wake you up. She understands that people are there to look after her… She’s like ‘you are my slave!’ There always has to be someone there when she gets home from school, we’ve all been trained in how to look after her. My Mum went into hospital a couple of weeks ago because her knee had swollen up, and the first thing she thought about was ‘what am I going to do about T?’ Families that don’t have an autistic child, they go out regularly as a family unit, but we can’t do that because T won’t have it. She’d have a meltdown in public and we couldn’t get her straight home.
Gwen: I understand T uses respite care. Was this a difficult decision for your family to come to?
Hassnain: It was difficult because it’s someone new to her. It’s someone she’s not used to. And to have to go away for a few nights… that’s difficult for any child. And T hates change. I think she sees it as a punishment… Being sent away. I think in her mind she thinks ‘oh come back, come back!’ But for us, respite was a necessity because we needed it… we needed that rest. It started out with one night, and then she got worse so it was two nights a week. Soon it’ll be three.
Gwen: What kind of challenges do you encounter when caring for T?
Hassnain: She needs constant attention. But the level of attention she needs just doesn’t exist… when she was in hospital she wouldn’t stay on the ward, she’d just lie down in front of the reception and want people constantly watching her. We called her a diva once- and her face screwed up and she just burst into tears.
I think I answered the challenges… her feed is a challenge because she needs it in constantly. When one of us uses a laptop she grabs the laptop as she wants to type on the keys. You can’t really do anything without T’s permission. She always wants my Mum to be in the kitchen so she’ll grab my Mum’s clothes and drag her into the kitchen. There’s a specific spot on the couch she wants me to sit on.
Gwen: And how do you overcome these challenges?
Hassnain: Well when it comes to the constant attention *laughs nervously* we’re not really overcoming the challenge, we’re just giving into her needs. Because without the attention she just goes into crisis, and it causes more problems for us… It’s distressing seeing her distressed so it’s easier just to give into her needs. And when it comes to her feed, it has to be in constantly because it’s her keeping her alive. So we have to just sit with her and watch her… and use force to prevent her from tearing out the tube. When she gets her hands in her pants we have to get in there and get them out because she likes to grab poo and smear it… You know ‘cause she constantly wants medication, we use this placebo effect, we put water in her medicine bottle and inject it with a syringe, but then she needs it constantly.
Gwen: What do you enjoy the most about caring for T and why?
Hassnain: What do I enjoy most… I actually adore it when she smiles and giggles. It’s the most adorable smile you’ve ever seen. And when she giggles it’s not like a forced giggle, it’s like when you tickle someone. It’s rare when she smiles but it’s the most beautiful thing. We’ve also taught her to count… if I hold out my hand she’ll pat it ten times. And I especially enjoy when she’s gone through a really bad patch and then has a good day.’
Gwen: If you had to describe autism in one word, which word would you use?
Hassnain: *he looks completely stumped* One word to describe something so huge… ‘misinterpreted’ or ‘misunderstood’. I think those are the words.
Gwen: Do you think we should be trying to cure autism, or trying to accept it?
Hassnain: Personally I don’t believe there’s a cure for it. You can strive for a cure but it’s just innate. Sometimes I want to cure it, ‘cause it’s not fair on the people that have it, it’s not fair on THEM. They don’t deserve to be regarded as different or disabled… Although of course they have a different view of the world. But it should be accepted, just as everything should be accepted. It’s difficult cause I get so passionate talking about T… I’ve got so much love for her… she’s taught me everything I know about the world. If it wasn’t for having an autistic sibling I wouldn’t be the way I am. She’s my best friend. My whole life revolves around her.
Gwen: What advice would you give to parents and careers struggling to meet the needs of an autistic child?’
Hassnain: Do not give up on them. Do not scold them. Do not be ashamed of them. Do not be embarrassed by them. Make them feel like part of the family. Don’t EVER make an autistic child feel ashamed of themselves.
Gwen: And finally, would you describe autism as a disability or a different way of being?
Hassnain: I wouldn’t describe it as a disability *pauses thoughtfully* because to me ‘disability’ means you’re unable to do something. But being autistic doesn’t mean you’re unable to do something. You have difficulties… It holds you back a wee bit… But it’s not like you can’t walk and talk. I think ‘disability’ is a really negative word. Is autism a different way of being? I’d say so. Because you see the whole world in a different light. Who would not want to take the world literally? It’s just so fun, like when people say ‘it’s raining cats and dogs’ and you look out of the window expecting to see them falling from the sky. That’s a beautiful thing. The world isn’t black and white, it’s colourful. Let your mind expand.