Children with autism spectrum disorder struggled with the pandemic lockdown, going back to school has brought fresh challenges.
Daniel Hosni went back to school this week. The COVID-19 lockdown disrupted the lives of tens of thousands of NSW school children but for kids like Daniel, living with Autism Spectrum Disorder, the distress and anxiety caused was far greater.
One in 70 Australians suffers from the lifelong developmental condition. It impairs their ability to communicate, behave and socialise effectively with the world around them. While the symptoms of ASD vary from person to person, ranging from very mild to severe; many cases require intense intervention and follow strict and consistent routines to manage their daily lives.
The pandemic lockdown shattered their routines, triggering major emotional outbursts and anxiety which was detrimental to their learning and social development.
Sydney-based behavioural therapist Paige Ormaechea who works closely with children with ASD, said that the strict social distancing measures and school closures had an enormous impact on the way ASD children learned and behaved.
"These kids don't understand why they can no longer go to school, play outside or have any contact with their friends and teachers," she said of their time in lockdown.
The complete change to their steady routine led to the children acting out with behaviours that could place their carers at risk. "They've resorted to yelling, scratching and pulling my hair because it's the only way they can express themselves. Some even spit," Ormaechea said.
It was not only the children impacted by the changes. Many of their families battled with the extra burden of navigating the lockdown alone, unable to call on support services to help with their child's needs.
'These kids don't understand why they can no longer go to school, play outside or have any contact with their friends and teachers.'
May Hosni, a single mother to four children, struggled to care for 15-year-old Daniel, who has moderate ASD and an intellectual disability. She described the mental toll of losing her job as a beauty therapist, the social isolation and the added demands of providing 24/7 care for her son.
"I had a breakdown at the beginning of the lockdown," Hosni said. "I was emotional, I got angry at everybody, I wasn't coping.
"But I had to put these emotions aside. I have to be there to raise my kids and make sure they're okay during these crazy times," she said.
The move to online schooling for Term 2 in late April was a major challenge, as parents tried to create the same learning environment at home as the kids had in the specialised schools they attended.
"It was really hard finding the best place in the house where Daniel felt most comfortable and secure," Hosni said. Every morning she had to make sure he was dressed and ready for school, his computer charged, and he was not too distracted by his surroundings.
There were some positive outcomes. Some families found the lockdown gave their child a break from the debilitating stressors that come with the unfamiliar smells and sounds of the outside world.
"Although his routine was disrupted, Daniel likes being home because it's safe and familiar," Hosni said. "As long as I'm there one-on-one with him for the whole time he's working online, he's okay."
There was also more time to attend therapy sessions, which were now online. Keeping up with Daniel's therapy stopped his mother worrying too much that his behaviour would worsen during the lockdown.
By creating an environment that mimicked a typical day pre-lockdown, Hosni and other parents of ASD children helped their children overcome the worst of the pandemic crisis.
With the lockdown lifting comes a new challenge, trying to readjust to normal life. Hosni hoped all the work she put in during lockdown would help Daniel get back into his usual routine when school restarted.
Monday was hard. Even so, Hosni is glad to see the end of the lockdown.
"The first day was quite tough. He was so nervous, especially because he hadn't caught the bus in so long and was scared that he would forget his stop," she said. "Even though the routine isn't completely back to normal, Daniel's managed it so well and has come [home] buzzing every day. I'm so proud of him."