PlayConnect provides facilitated playgroups for children with Autism or Autism-like characteristics. This means that anyone who may be exhibiting signs or behavioural problems are welcome. As too are siblings, grandparents and carers.
Isabella Rosinsky, Playgroup Victoria PlayConnect Manager, said that she is frequently told by parents that PlayConnect has been their lifeline.
The PlayConnect program provides respite when parents are at the end of their tether. At present, it is hard for parents to find any other support. It is a grey clouded area where parents and carers often get passed on from one service to the next, with little real connect.
PlayConnect provides communication, behaviour and social support to children who need assistance in these areas. It provides strategies for the parents to use outside of the groups. This also means that the parents can have a rest, a cup of tea and a chat.
“There is no other program quite like it that provides intentional support not only to the children attending the groups but also to the parents,” said Isabella.
Last year Melbourne University students spent a semester compiling data at PlayConnect in Sunbury and Brighton. Their findings revealed that parents and carers of a child with ASD are more susceptible to mental health issues, including high levels of stress, fatigue and depression. After spending only half an hour alongside a parent and child with ASD, these findings are not surprising but again and again families are treading water, waving their hand for help and there is not enough support available to maintain a state of well-being.
The emotional trajectory of ASD can be one of high peaks and low troughs. ASD comes with unpredictability which can make it challenging for all involved.
Isabella explains: “There’s a saying in the ASD community – If you’ve met one person with ASD, you’ve met one person with ASD. This is because everyone’s symptoms and issues are different and it can be tricky understanding what each individual’s issues are and how to support that person.”
Isabella knows from experience that there is great consequence if early intervention is not obtainable.
“This is why it’s so important for us to start working with those individuals early and equip them with the skills to manage later in life. It’s also why we have the agenda of educating and supporting the wider community through this project.”
In recent years, rates of ASD diagnoses in Australia have increased and this sends big ripples through families, schools, neighbours, friends.
The Victorian Parliamentary Inquiry into services for people with Autism Spectrum Disorder in June 2017 highlighted parental stress, and lack of support, as major issues that need to be addressed.
Professor Cheryl Dissanayake is the Founder and Director of the Olga Tennison Autism Research Centre (OTARC). Cheryl spoke at a public hearing in Melbourne. She said: “We are killing these parents. We are telling them early intervention is important, and then we are keeping them on waiting lists, so we are plunging them into mental health chaos, really.”
A further excerpt from the report reads:
Professor Dissanayake told the Committee that early identification and diagnosis leads to a reduction in family stress and an increase in family wellbeing. Despite this, families of those with autism have the highest levels of stress and the lowest quality of life when compared to not only typically developing families but to other families of children with developmental disabilities. Even after receiving a diagnosis, parents spoke of feeling as though they had ‘entered an unknown world’ with little or no information or guidance on what to do for their children.
The Committee heard that parents of children with ASD had higher rates of mental illness, stress, anxiety, depression, relationship breakdowns and social isolation.74 Dr Sandra Radovini, the Director of Mindful told the Committee at a public hearing in Melbourne that families needed support throughout the lifespan: Parents of children with ASD have some of the highest mental health difficulties. The stress of being a parent of a child with autism is quite enormous, even when compared to children with a range of other disabilities — there has been quite a bit of research in this area — so we strongly believe that families need to be supported, again throughout the life span.
Isabella said that while PlayConnect is addressing some of the issues the program was slashed so dramatically some years ago that they are only able to support a small number of the families that so desperately need it.
Over the years, the PlayConnect team has obtained a lot of unique skills and experience, tailoring this to the needs of the families.
“We are now going to capitalise on to extend this much needed support to families in the community,” said Isabella.
All the while, a handful of hardworking PlayConnect staff are trying their best to help with the day-to-day activities and tasks of children with ASD- yet society is trailing far behind. There is a severe disconnect; what these children need and how they are treated and helped within our local communities is often misunderstood.
Early intervention is the best way to equip these children for the future. This is an area that requires patience, understanding and a whole lot of perseverance, for the sake of the families and for the future of these children who walk beside us all.
Victorian Government 2017, Inquiry into services for people with Autism Spectrum Disorder. PP No. 298, Session 2014-17 : https://www.parliament.vic.gov.au/images/stories/committees/fcdc/inquiries/58th/Autism/FCDC_58-03_Autism_report.pdf
Article by Sinead Halliday