From the interviews with children series: Karolina tells us what it is like to have a sister with Asperger’s.
What is it like to have a sibling with Down syndrome, Asperger syndrome or autism? How does disability affect the life of siblings? What problems do they have to face? What does their everyday life look like?
What is your first memory of your sister?
Karolina (14): Joasia was born when I was little (2.7 years), so I don’t remember anything from that time.
What changed after your sister was born?
I can’t remember. Sometimes, I brought my mum diapers. I remember that I used to come up to Joasia and strike her.
If you were to tell a stranger something about your sister, what would you say? What would be important to say?
Joasia sings well, and she makes friends with people very easily. She’s very nice to strangers. She gets weird when she’s among her friends. For example, when she sees the number 5, she starts turning her head in a weird way. When she hears some words, like ‘which’, ‘eleven’ or ‘more’, she must repeat it out loud at once in her own way, which is the only right way in her opinion. When she hears too many words (gets overheated), she starts repeating all of them, doesn’t matter if she says them correctly or not. She’s loud, very loud, when she’s very agitated, and often starts screaming.
When Joasia was a bit younger (about 2 years), she didn’t want to dress, and she used to act out when we were about to go out somewhere, so even when we finally managed to leave home, we were always late.
It’s easier to go out now, though Joasia still takes her time.
Joasia loves doing art. She paints with oils, draws with watercolour pencils and folds origami. And she comes up with really interesting things.
Does your sister’s disability affect how you feel? Do you notice any differences between your life and the lives of your friends?
One difference is that we’re rarely on time when we go out with the whole family. We need to have everything planned out in detail, because Joasia can’t handle spontaneous situations.
My sister’s disability does affect how I feel. When Joasia screamed very loudly, sometimes even for two weeks or so, I couldn’t focus on learning, doing my homework or preparing for tests. Her screaming bothered me very much. You couldn’t stand being at home anymore.
Communicating with Joasia when she’s even only a bit agitated has always been the most difficult part. When she’s more agitated, she doesn’t respond at all. You can talk to her, and she’ll just stand there. She doesn’t even repeat the words she hears. She starts screaming only when these words reach her.
What helped you with the situation in your family?
Nothing helps when Joasia’s having a crisis.
But it helps to not talk to her. It feels nice to get away from my sister by going to the cinema, or the swimming pool, or go shopping with mum, dad, whoever.
If you could, what would you change about your sister?
I wish Joasia wouldn’t need to repeat the words she hears, and that she wouldn’t have problems with dressing and could go out quicker (instead of it taking an hour).
Joasia was diagnosed with the Asperger syndrome, oppositional defiant disorder and obsessive compulsive disorder with a dominance of obsessive behaviours.
Karolina’s parents talk about how they help their daughter:
- When we heard the diagnosis, the entire family took part in family therapy sessions so that we could all understand what these disorders are about. We also focused on Karolina’s feelings and emotions as Joasia’s sister;
- When we started therapy, a few sessions were for Karolina only, so that the psychologist could answer her questions, explain her sister’s disorders and clear up any of her doubts;
- Joasia and Karolina sometimes took part in sensory integration sessions together, which they really enjoyed;
- We watched films together, including films about autistic disorders;
- We went with Karolina to the swimming pool, to the theatre, we visited her grandmother and we went to have ice-cream together;
- We set a time dedicated to Karolina only (Karolina decided what she wanted to do with mum or dad);
- We played many tabletop games, such as Dixit, Monopoly for Children, Cluedo, Eagle Eye, Charades or Uno;
- We organised themed birthday parties for Karolina and Joasia, meaning that you had to come up with a theme, get costumes, organise games and invite games;
From her parent’s archives: what Karolina said when she was 10
When Joasia was 2, she was very nice, but she didn’t want me to hold her in my arms, she preferred Mum. She also danced a lot.
When Joasia went to preschool, she started screaming. I went to school with Mum, while Joasia stayed at home with Dad and went to preschool for 10 a.m. Joasia always sang at the preschool before went to sleep. When we went there to pick her up, she wanted to stay for a bit longer.
When Joasia was 4, she didn’t want to play by the rules. She didn’t want to lose, didn’t want to play any games besides tag or tabletop games. She didn’t want to play because she was afraid of losing.
When Joasia was 5 (the eldest group in preschool) she used to call me a cow or a pig, and started coming up with her own words, like ‘butt-girl’. All the best things had to be her. She used to hit me for winning and said things like ‘You’re playing it wrong’ or ‘You idiot’.
In the reception class, Joasia screams in the morning, punches and kicks me, shouts ‘Go away, you idiot’, calls me names, and then hugs me asks me ‘Are you okay?’. She can play games, but only if she wins. She wants to do art classes all the time. And she never stops screaming. If I could change something about Joasia, I would make her stop screaming and hitting me. She doesn’t smile at me, she just hits me very often. When she talks about something, she doesn’t make any gestures with her hands.