Blog: Supporting young people with autism during coronavirus
Published: 3 Apr 2020
Currently in the UK, after you receive a diagnosis of autism as a young person, you are very unlikely to be offered any sort of post-diagnostic support that is catered to you and your needs. Although the NICE guidelines on autism recommend a follow-up appointment within six weeks, a personalised autism plan and a key worker who will support you, most autistic people will be given a simple leaflet or told to look online for more information.
When coronavirus became part of our lives, we knew that we had to respond quickly and set up support for autistic young people and utilising technology was our sole option.
This isn’t because post-diagnostic support is seen as unimportant; on the contrary, we know that good support after a diagnosis can make all the difference in understanding yourself, valuing your identity and ultimately improve your overall wellbeing. But with waiting times for a diagnosis increasing all the time and the focus being on the experiences of parents and carers, so far post-diagnosis support specifically for autistic young people is being neglected.
Thanks to my Fellowship I was able to visit and observe support services and peer groups across Australia and New Zealand. We know that all autistic people are different and therefore will have differing needs and communication styles. Whereas some people are willing to meet others face-to-face, either in a group or 1:1, others prefer online communication from the safety of their own home. I wanted to know how online services could be curated as ‘safe spaces’ and technology used for good; to connect people, to facilitate conversations and to be a trusted source of information.
One of the best examples I found of using technology was I-CAN Network, an organisation that runs autistic-led online group mentoring for young people ages 9-20 across Australia. They have created a space where autistic young people can connect with peers; after being ‘othered’ and socially isolated for so long, meeting people who are like you and have similar life experiences is validating and creates a sense of belonging.
My Fellowship showed me that there are key principles that post-diagnostic support must include in order to be useful and genuinely improve the wellbeing of autistic young people.
So, when coronavirus became part of our lives, we knew that we had to respond quickly and set up support for autistic young people and utilising technology was our sole option. For a large percentage of the autistic community, structure and routine is incredibly important and in the current climate, regular coping mechanisms are no longer possible. We also know that 4 out of 5 young autistic people have a mental health condition and that 79% of autistic people feel isolated, so it was imperative to create something they could access quickly and safely.
Emily with some of the Ambitious About Autism Youth Patrons
Based on the work of I-CAN Network, we have set up online Zoom chats for autistic young people where they can share their feelings and fears with other young people like themselves and ask for advice where they know they are understood. The chats are structured, based on a range of topics, have rules of engagement and run at the same time, four times a week.
One of our Youth Patrons has said: “After finding out about the online chats and being able to speak to other young autistic people that know how I’m feeling, I don’t feel alone in all this anymore. Seeing their familiar faces and hearing their voices is more powerful than you would ever know right now. It’s little things like knowing that they care about me, and hearing them say that they are struggling too but also what they are doing to cope”
My Fellowship showed me that there are key principles that post-diagnostic support must include in order to be useful and genuinely improve the wellbeing of autistic young people. These are: support to be realistic but positive, the opportunity to meet other autistic people, having key people you can rely on and the ability to thrive not just survive. What the current climate has shown me is that these principles are also key to navigating uncertainty and that having a supportive community and safe space is priceless. Together with the Ambitious about Autism Youth Patrons we will continue to create resources for autistic young people and their families to weather this storm together.
For more advice on how to cope during anxious times visit the Ambitious About Autism help page.