The first major investigation into the impact of Covid-19 on autistic people and their families found government messages conflicting and confusing efforts to move therapies and other health support online unsatisfactory and individual support for schooling from home lacking. Respondents also emphasised the difficulties brought by the social isolation that followed from strict lockdown requirements.
Young people and adults spoke about missing friends and challenges generated by the absence of broader more incidental forms of social connection. Many mentioned the detrimental impact that disconnection had on their mental health.
Previous evidence suggests that many autistic people faced severe challenges to their wellbeing before the pandemic hit frequently requiring additional services and supports within the education and health sectors that the pandemic placed under threat. Autistic people too are often thought to be uncomfortable with swift and unexpected change and struggled with future uncertainty.
However some autistic people as well as those who work with and support the autistic community spoke more positively about the lockdown. These more optimistic voices contend that several of the service delivery adaptations such as moving schools work and therapies swiftly online served autistic people well. Some argued that autistic people may be more adept at dealing with social distancing than non-autistic people as they can find conventional social interactions unsettling.
Despite enormous disruptions participants were clear that the experience was not straightforwardly negative and many described positive experiences. Some acquired new pets or engaged with things they enjoyed such as playing Minecraft and Animal Crossing or took up new ways of connecting to others. One young adult began his first romantic relationship.
Others were optimistic about these positive changes continuing into the future: “Finding pleasure and experience in things that are close to home and smaller and in a lot of ways non-consumerist has been rather nice” one autistic adult said.
There were also unprecedented changes in the ways that they worked learnt and accessed services.
Entire workforces began working from home school and university students switched to virtual classrooms and were able to access GP services mental health treatments and other services from their homes via telephone or telehealth. Many survey participants reminded us that the disability community has long been campaigning for more accessible arrangements often to be told that such arrangements were simply impossible.
To some the scale and speed with which these innovations were implemented demonstrated that “the whole world can work remotely”. For people with disabilities who “have been banging on the door for years saying ‘why can’t I do this at home?’” seeing companies schools and service providers rapidly and seemingly effortlessly make these accommodations for the masses was bittersweet. Yet participants often praised the efforts that had been made and were hopeful that there will be some positives that come for their community from these new arrangements.
They wanted people to be “more open to kids doing part-time schooling and part-time at home schooling” and for remote working to continue post Covid-19 “creating opportunities for autistic and other people that have disabilities who would thrive and be so much more productive in a home environment”.
Some participants were positive about telehealth services. They felt it was “quite an easy transition to telehealth” and it has “actually been better”. For those that felt either that telehealth was “fantastic” or was “just about the same [as face-to-face sessions]” meant that they could continue their therapeutic sessions.
But praise for telehealth was far from universal. Many participants reported negative experiences.
They spoke about deciding either not to access telehealth services or to begin accessing them and then stopping them altogether as a result of their experience.
Ultimately autistic adults felt that their sessions have “to be face-to-face”. They described that “it’s more of an interaction rather than just talking to them and just seeing them. Being there is a pretty big part for me.” One autistic adult said “I find I am struggling more to communicate with people because I misinterpret things via the phone that I wouldn’t misinterpret if I had seen the person’s facial expression”. Although there was much positivity about the flexibility that learning from home provided there was also a strong sense that there was not enough of a direct “human” feel to the efforts.
Young people were unanimous in what they were looking forward to after Covid-19: “Seeing people.”
Missing broader social contact for some adult participants and the desire for social contact went further than missing their established social circles and quality friendships. Not having much or in some cases any social contact during the lockdown made them long for it.
According to one participant “I didn’t realise how much I need human interaction and how much humans actually are somewhat a valuable component of my life.
On the positive side many participants reported being glad that the relentless pressures of ordinary life had been lifted during the early months of Covid-19. They felt they did not have to conform as straightforwardly to timetables rules and routines set for and by non-autistic people.
The report was prepared by Sydney Macquarie RMIT and Western Australia Universities.
For more information visit: policy.lab@sydney.edu.au.