The Coronavirus crisis presents different but profound, and troubling challenges for everyone, particularly many autistic people. That’s why we are providing support today through our information hub. Amid the uncertainty we face, we must think about any lessons we can learn from what is happening now to prepare for tomorrow. In this article we explore how the world could change to better understand and accommodate the needs of autistic people in the medium and long-term.
This is a live article featuring views from autistic people, families, researchers, our staff and other opinion leaders.
Workplaces become more flexible and empathetic
Brett Heasman, autism researcher
The lockdown has forced many companies to adopt working from home practices and has shown we have the technologies to support it, making more job roles accessbile for autistic people that may struggle with face-to-face meetings. Empathy may also change in positive and negative ways towards autistic people. Anxiety about the outside world, its unpredictability, and social contact are all familiar experiences for autistic people so hopefully there will be more appreciation of those challenges. On the other hand, changing priorities in a recovering economy may push the subtle importance of supporting hidden differences off the agenda of many companies.
Therapeutic support is offered remotely
Freya Elise, autistic autism researcher:
Video calls for appointments means no travel or difficult waiting rooms and less unpredictability. Being able to use video calls or instant messenger during an appointment with my care coordinator means I can communicate how I best can at the time. Previously for many people the phone was the only option and this is difficult for many people.
Michael Ryan, Counsellor for autistic children
One of the biggest challenges for people with autism is the level of anxiety that they can experience as they navigate a world designed for neurotypical people. They sometimes seek out the services of a therapist to deal with this anxiety. Since the onset of Covid-19, most therapists have moved the delivery of therapy online using video-calls. The opportunity now opens up to the autistic community to connect with a therapist who has the appropriate skills to work in this area without having to travel long distances or leave their home. While some of the nuances of therapy can be missed, most therapists have discovered that full and meaningful therapeutic connections can be nurtured and appropriate support provided through video calls.
Recognising that autistic traits are natural responses
Sue Fletcher-Watson, autism researcher
Our clinical definitions of autism take a selection of behavioural patterns and turn them into “symptoms” of a “disorder”. They describe "deficits" in social and communication preferences and "rigid" or “restricted" interests and routines. In doing so, they suggest that non-autistic people are great at managing social interactions, effortlessly understand the emotions and needs of others, and waltz through life without relying on routine or hobbies. The Coronavirus crisis has exposed how these assumptions rest on the flimsiest of foundations. In this uncertain time, need for routine and therapeutic hobbies has sky-rocketed. Social connections are laborious - people sit in a Zoom video conference wondering if it is their turn to speak, and are wracked with worry afterwards in case they seemed rude. I am not autistic myself, but these mass experiences resonate powerfully with what autistic people have told me for years. My hope is that everyone will remember how they felt during the pandemic, and use that memory to increase their empathy for and acceptance of autistic people.
Better understanding of autistic people’s special interests
Cat Hughes, autistic member of the Autistica science team
As the situation with COVID-19 has developed and news has become increasingly distressing, we have heard many tips around managing anxiety for the general public. There has been a huge focus on finding comfort in things that you know you love, like re-reading favourite books or re-watching favourite films. Experts are advising that people learn new hobbies or go back to ones that they loved. It’s hard not to think about special interests when reading these tips. Suddenly, we have normalised managing a stressful day by repeating a favourite song over and over. Knowing a film well but re-watching it again purely for the delight and comfort it brings is an acceptable way to cope with stress. I hope that after all of this has passed, people have a new understanding of special interests, of the joy that they can bring and the important role they can play in managing the daily anxiety that so many autistic people experience.
Events become more accessible to a wider audience
Bethan Davies, autistic member of the Autistica science team
Because of the impact of lock down, event organisers are being pushed to explore ways of holding in person type events virtually. For many of us this is something we have wanted to do for years but haven’t been able to prioritise- bringing in newer technology that allows people to join in who wouldn’t be able to do so already. Many events are now available digitally but with a set up that means those behind a screen means are separated from the delegates that are ‘really there’ and lack the ability to strike up the casual conversations with strangers and make new connections that are so important for most conference goers. Having all delegates as virtual delegates means as well as improving the setup and knowledge of virtual events, new ways to network and form new connections have to be built into events too. This hopefully will continue forward to times when people who want to can attend events in person, and those who cannot or do not want to for any reason can still join in and feel included and heard, increasing the accessibility of a wide range of events and the knowledge, community and positivity that they impart.
More autism research data will be collected online
Lorcan Kenny, researcher and member of the Autistica science team
The outbreak of Coronavirus (COVID-19) has meant collecting research data cannot happen face-to-face, save for research about the virus. Suspending almost all in-person collection of research data has undoubtedly resulted in a profound interruption to scientific endeavour. The research community are united in their desire to return to business as usual but before rushing to reinstate every process exactly as it was we should take pause and ask ourselves if any of the innovative practices rapidly and tirelessly implemented in the face of COVID-19 disruptions should usefully be retained. One thing that should change is how open individual researchers and, possibly more importantly, ethics boards will be to the collection of research data online. I’m not advocating for more online surveys, instead we should carefully reflect on whether we can avail of the policies and procedures put in place to conduct interviews, focus groups, observational studies and experiments online during the COVID-19 lockdown and decide if we should offer these as de facto data collection options for any study that lends itself to these methods. Options people mooted because of vague statements about a lack of experimental control but which make research accessible to more autistic people - pandemic or no pandemic.
The educational system will embrace different ways of learning
Carly Jones, autistic mother on the Autistica Insight Group
I feel that now the U.K. has had to go remote with education we can learn from this and have optional remote learning for those unable to cope in a school system every day or those who suffer burnout.
Michael Ryan, Counsellor working with autistic children
The Education System could produce all curriculum requirements in a format that could be delivered either fully remotely through an online platform or partly remotely in conjunction with local schools for some classroom based learning. This could help those who find the school setting too difficult.
An allocation of teaching staff could be based remotely or regionally to deliver the online element of the lesson plan and liaise with local schools for any joined up project work or occasional school based practical subjects. Students might also be able to access the classroom remotely via video-conferencing and take part in classes from home if they are not in a position to attend on a given day.
Hopefully, as the world adapts to a new normal, everyone will understand more about how autistic people see and experience the world. Watch our film released last year about how we think the world could be more understanding of difference.