This is a long overdue post that has been dragging since the 1st of April, thanks to an intense three weeks at work and school. But here it is, finally!
Do you know this ribbon?
It is the symbol for Autism Awareness. April is the month for Autism Awareness and 2nd April is the World Autism Awareness Day.
The puzzles on the ribbon represent the mystery and complexity of autism. The colours represent the diversity of people and their families who live with this disorder. The brightness illustrate hope through research and increasing awareness.
Autism spectrum disorder (ASD) is a broad class of neurodevelopmental disorders with a common set of core features including social impairments, communication difficulties and repetitive behaviours.
Autism affects about 67 million people. Autism is especially personal for me because I have a cousin who is autistic. Her name is Charlotte and she just turned eight yesterday. She looks like any other eight-year old kid but she cannot talk nor play or run as fast as the other kids her age.
She loves things that are repetitive. She loves things that rotate, blink continuously. When she was younger, she always spun around on the floor or bed or stare at the ceiling fan spinning. She would make me sing the same nursery rhyme, Ten Little Indians, over and over and over and over and over again.
She rarely pays attention but when she hears music she loves, bam she turns around and listens to you. She must be the coolest eight-year old who knows tunes by heart from nursery rhymes to Adele, Little Mix and Bollywood. When I sing something new and she loves what she hears, she tells me to repeat it a million times and then she starts singing it all day long, every other second.
I used to be a very shy and reserved person, but Charlotte taught me to be myself and to be least bothered about people around me and what they think. When she laughs, you know that it is true happiness. She sings at her loudest, screams with joy when she’s truly ecstatic and she’s one special little girl who’s changed my life. She inspired me to do things that I probably never would have before. When I’m with her, I am me and it’s kind of liberating and we’re a tad bit crazy together.
I barely knew what autism was exactly and since her diagnosis, I’ve been reading up and trying to better understand what this is. The disorder is so complex because it is so variable across different people that scientists are unable to identify a cause for autism. While it has been difficult for scientists to understand the disorder, it is even more difficult of parents of these children.
A comparative study conducted by Tonge et al. (2014), aimed to find out the effect of parent education with regards to ASD. The study compared two interventions – (1) parent education and behaviour management intervention (PEBM) and (2) parent education and counselling (PEAC)
Parents in PEBM received a behaviour management skills training package that taught early intervention and cognitive behavioural techniques that taught parents effective coping skills. It includes group and individual sessions with parents and children that helped parents understand the development of their child and also learn about autism with regards to the characteristics of communication, social and behavioural impairments of their children, how to manage the stress associated with these problems etc.
Parents in the PEAC only received education material with no training activities unlike those in the PEBM group. Individual sessions were conducted for parents only where they raised any issues that they face.
The efficacy of these methods were analysed by measuring the adaptive behaviour and autistic symptoms of their children. Parents who went through both education and behaviour management had children who showed significant improvement in their autistics symptoms at 6 months follow-up. It showed that parental mental health and adjustment in addition to a child-focused intervention programme is extremely useful. Skills training in addition to parent education has shown to be effective and show positive outcomes amongst children with autism.
I am unaware of such programmes in Singapore and I really hope people take more action to increase awareness of autism and help parents with autism understand the disorder and help them better cope with the difficulties they and their children face. (Thesis project anyone?)