Seeing it’s Autism Awareness month it seems like a good time to talk about my experience as a carer for someone with it. Though it’s not Carers Month, granted, and we should be listening to people with autism rather than me. But autism affects whole families and communities.
In case you don’t get to the end of this rather long piece, the take away message is: don’t stare/chastise/advise. If you can, offer help.
I don’t tend to write much about my personal experience of autism because it feels like an invasion of Rohan’s privacy and a lot of it is just plain hard and unpleasant. And Rohan is adorable, as well as being hard work.
In my personal house style I’m not using a capital for autism unless I refer to the medical diagnosis. To me, a capital makes autism feel more stigmatising and powerful, while I’d prefer that the differences autism creates were accommodated and accepted as normal. So I guess I’m looking at it as like, “I have indigestion”. Rohan has autism.
Rohan has an atypical representation of Autistic Spectrum Disorder. One of his kindy teachers once said, “He breaks a lot of rules,” and I didn’t really know how to reply. I felt acutely apologetic for his behaviour as a preschooler (while wishing his differences were respected), and yeah, he breaks rules like a rockstar! He actually escaped from Special Needs kindy one day, and that place is high security with a carer ratio of 1000:1.
Anyway, Miss Michelle followed up with, “He breaks a lot of rules…”
[Blank look from me]
“…of the diagnosis.”
Right! She didn’t mean around preschool, she meant the guidelines of diagnosis. Which just goes to show what a wide ranging thing autism is. Rohan is often friendly, social, loves to engage with people he knows, can express himself very well about things he likes. He can seem very bright but is very slow to learn.
In some areas he has severe autistic tendencies. When he tries to form letters it’s beautiful and heartbreaking. It takes so much effort for him, while many other kids have held pens effortlessly since they were two. He’s been trying for that long, but still struggles with the motor control.
This was our morning:
(And keep in mind, Rohan is seven and half, not two.)
I was half awake when Rohan started screaming and shrieking. Not for any identifiable reason, just to let us know he’s awake, I guess. And maybe he likes the sound or feel of it. Maybe he’s too tired or can’t get his brain into gear to say, “I’m awake! Come and get me,” or to walk out of his room and find us. (We should start modelling that phrase, actually.)
Brian got him up and took off his night-time nappy, and Rohan kept intermittently shrieking, perhaps because he likes the sound. This is really painful when you’re dressing him and he screams/shouts in your face.
He was also throwing around his favourite weird words like slammanmabot and dockabicky. (These can be quite entertaining when your ears aren’t aching.) Stepworm is another.
Brian took him to his study and Rohan kept intermittently shrieking. Brian started to get annoyed, “Stop it, Rohan.” so I called Rohan to the bedroom, and he came eventually, which was great. (He comes when you call him about half the time. It takes a while!)
We had a nice hug (with some more shrieking). I tried to get him to talk about Stradbroke Island and got a few answers out of him.
“Did you like the lake?”
“I liked the lake.”
“Did you like swimming?”
“I liked swimming.”
Eventually I brought him to the kitchen and gave him his medicine. Medication has saved us, really. Right now he’s on Vyvanse and it’s a miracle. When he switched to it last year we saw an instant improvement in his language comprehension and fine and gross motor skills.
Ro ate some toast and tomato, yay! He’d lost weight last time the paed weighed him, as Vyvanse decreases his appetite and makes his tastes more sensitive. He watched Youtube as he ate breakfast.
I finally got to sit down and have my coffee (which should happen before all this!). I try to get up early for peace and quiet before anyone else wakes.
Then I heard tinkle-tinkle in the sink and went to investigate. Rohan’s pjs had fallen down around his ankles and he was doing something with water and lots of margarine in a bowl in the sink. Sigh. I cleaned up the margarine on the cupboards and bench and he asked to go to the toilet.
He always likes company but is almost independent on the toilet (except for bottom wiping) and hasn’t put his feet in the bowl for a few years, so I went off to get his clothes from his bedroom. I came back to him dancing in the lounge room half naked and the smell of poo. He had a few smears on his body and the toilet seat, so obviously he’d tried to wipe his own butt, which is great. But he needed a shower, so I put him in the shower and gave him a good wash, and cleaned up the poo on the toilet seat and put on another load of washing.
I am so grateful we’ve passed toilet training. 2013 was my year of poo. Lol. Not sure when he’ll master bottom wiping.
I laid out his clothes and he dressed almost independently, though needed me to point out his pants were going on backwards, and he asked for help with his zip and press-stud.
Now he’s playing iPad on the lounge.
I guess what I want people to take from this is that being a carer for Rohan is hard. It takes a lot of time, effort and patience, and when I imagine what it would be like to have a seven year old who simply wakes up, comes in to my room, says hi, gets a drink, goes to the toilet, can ride a bike around a quiet street with other friends… does all those usually easy things…I wish that was us.
But you know, just last Tuesday I was stopped at the lights with both kids in the back of the car, and I thought, I feel like I’m coping. I can cope with this now. I felt that way because both kids had been great that day. They’d come to Writers Activation with me, played their iPads. We’d had lunch and Ro hadn’t screamed too much at Sushi Train. No one had glared at me and blamed me for his behaviour or advised me how I could parent better.
A lot more goes into making me feel that I can cope, too.
My partner is amazingly supportive and great with Rohan, though Rohan’s challenging behaviours fray our tempers and sometimes we argue about how to handle them. He encourages me to chase my writing and OCR obsessions which give me the intellectual, community and physical stimulation I need. We have wonderful babysitters who understand and are patient with Rohan. My dad has been really helpful, lately, looking after Rohan for whole days while I’ve worked on stuff for Contact, the S.F. convention. My partner’s parents have helped out, too. Rohan’s school is also great. He attends a mainstream public school and I can’t think of how it could be better. The teachers and children are amazing. When a kid with Downs does a cartwheel she gets twice the applause of a kid without special needs.
The kids get it.
And Rohan is a lovely child. When he’s not shrieking or hitting he is great to hang out with and talk with. He loves exploring, walking and going on boats, and he is very huggy, he’s totally into Macklemore (god help me when he starts to repeat the lyrics). He enjoyed the Colour Run at school, and smiled, holding his assistant’s hand while the parents carefully sprayed him in colour. He registered it when his schoolmates wouldn’t talk to him one day (because he’d been shrieking and hitting the day before — thankfully he doesn’t do too much of that at school), which is great because it’s peer pressure encouraging him to behave appropriately.
Interestingly, he hasn’t gone through the gender obsession many kids go through. He still struggles to get pronouns right. Maybe he’s advanced on that one and gender categories aren’t so important. But he does have problems perceiving patterns, so possibly hasn’t picked up on the typical gender cues.
He’s asking me for more toast, so I better go do that…
Toast is cooking.
Let’s not forget Jasmine, the nine year old big sister. Imagine how hard all this is on her. I’m not sure that her teacher understands that sometimes she’s up until 11 or so because Rohan won’t stop shrieking, and it’s hard for her to concentrate on her homework if he’s playing up. She misses out on a lot of my attention which he absorbs, which is really fucking sad.
Things could be worse.
If you want to help carers of people with autism, do. The best way to do that, when I think about it, is to spend some time with the person with autism, and/or the siblings, and give the carers a break. Find out what the person with autism is into and do that with them. I’m really grateful when parents from Jasmine’s school take her along to events. While most younger siblings can go along to shows/events, this is really difficult for us because we don’t know if Rohan will be quiet, and most audiences won’t tolerate a shrieking audience member. Hostile glares hurt.
Accept our differences. Rohan is really scared of birds, cats and dogs, and while you might laugh at that, Rohan has tried to run on the road several times to get away from a dog, and some people with dogs huff and/or roll their eyes. And I think, “If you find my son’s reaction unpleasant, how do you think this is for us? We cope with this everyday. We plan for it and accommodate it. And it’s just one of his challenges.”
Don’t shun or stare at people (and their families) who are misbehaving. Forgive us when we’re grumpy or our hair is all over the place. Don’t buy us more toys or give us advice or tell us about what you read, or saw on TV, or about this great new treatment for autism — unless it’s scientifically tested and proven. Gah, I didn’t want to do the don’t list.
But it’s worth mentioning that if we know a person with autism, we’re probably the expert on how to help that person, and most of us have done 300 hours of therapy with professional speech therapists, OTs and psychs. Not to mention our own reading and thinking.
So we know a lot, and we’re also possibly full (like a cup is full) of information on autism. We live with autism every day. We’d probably rather read science fiction or romance or some weird combination of both.
Even if we’re just starting out on our journey of discovering our kid has autism, we might not want to hear about what you just read/saw about it. Those early months of diagnosis were heart wrenching. I spent a lot of time following Rohan around parks and at home, stopping him eating rubbish or wrecking and breaking things, while crying and wondering how (if) I’d survive autism.
Again, what would have helped most would have been breaks away, to process what was happening with us, and to think about something else. To feel that my life wasn’t going to be swallowed by autism, and that I might write an okay book and look hot in a bikini again one day.
Anyway. Life for people with autism, and their families, is what we all make it. Include us if you can, get to know us, and help us have a break.
Thanks for loving us, and for your patience when we can’t do what others can.
If you have any thoughts, feel free to comment respectfully, especially if you’re a carer of a child with autism who has different views to mine. Or a person with autism. I want to hear your voices.
Thanks for reading.