On September 11th 2020 we held our first Bristol Autism Support Network session. The topic for the session was ‘What has the pandemic taught us?’. Around 20 professionals from a wide range of disciplines joined us, including NHS, Bristol City Council, education and private business.
Three speakers shared with the group their lockdown experiences, including the challenges they faced and how they overcame these to better support their clients and service users.
Kate Laine-Toner, Founding Director of Bristol Autism Support (BAS)
Kate shared with the group that she set up BAS in 2012 in order to create a way for parents of autistic children, with or without a diagnosis, to connect and share information. BAS is passionate about parents meeting face to face because we know that this can reduce isolation, build confidence, spark friendships and strengthen our community. In normal times, we run support group meetings, coffee mornings, parent courses, family activities and talks and seminars, among other ‘in person’ activities.
When the pandemic hit, the BAS team moved quickly to create a virtual support offering. We became heavy Zoom users, offering up to three support groups each week. However, we found that our parents quickly got ‘Zoom fatigue’ and/or had difficulty discussing the challenges they were facing when their children were at home.
We have always run a large and busy Facebook support group, but when we realised Zoom was not the complete solution for virtual parent/carer support, we quickly developed other options, including phone support, virtual mentoring and WhatsApp groups that run alongside our Zoom support groups, courses and children’s activities.
In order to ensure that our parents were still getting a personal touch, we sent out letters of encouragement, pamper packs, sunflower lanyards with face covering exemption cards and party packs to accompany our children’s activities.
Overall, the pandemic has been good for our charity. While we desperately miss seeing families in person, Covid-19 has pushed us to develop new ways of working. We’ve collaborated with other organisations even more than we have in the past (creating the BASN group was a direct result of the pandemic), and we have been able to find some niche funding opportunities to help us keep these virtual support options running.
We are happy to receive referrals from professionals for parent support. Please click here for our professional referral form.
Matthew Richards – Engage & Immerse
Matthew runs Engage & Immerse, a one-man business that provides music experiences for individuals with additional needs. He normally sees people in his studio, in their homes and other settings such as care homes. When lockdown happened, his work ground to a halt, and he had to find a way to continue to serve his clients in a meaningful way despite not being in the same room. He worried that working virtually with his clients would diminish the ability for him to truly connect with them and facilitate their creative expression.
Matthew works in an intuitive and fluid way with his clients. He doesn’t go in with a plan but follows the lead of who he is working with. His main goal is to use music to bring happiness and wellbeing to those he works with. He shared with us that there is compelling evidence indicating that music is a powerful non-pharmacological tool for accessing the whole brain and that it can be used to facilitate profound changes to people’s lives.
Working virtually with clients can dampen some of the spontaneous interaction and communication – both nonverbal and otherwise – that Matthew would normally have with them. How could he create the usual feedback loop of positive interaction with his clients? He decided to test out how online sessions might work with his clients, and was pleasantly surprised by how well this went.
Matthew found that as long as he adapted his sessions around the individual’s interests and preferences, he could still connect and engage with them in a meaningful way. He also talked about the importance of looking directly into the camera lens as much as possible to help his client to feel he was looking directly at them.
Some of his clients are highly anxious individuals who don’t often leave home. An unexpected benefit of delivering online music sessions was that he could gently engage with these clients and bring a pleasurable, social activity to them, in their safe space.
Matthew told us, ‘music has so many inherent capacities that make it the ideal tool for online sessions – it’s personal, persuasive, emotional and physical. It affords synchronisation in the brain – it’s so many things. [With the online sessions,] the music did most of the work.’
Due to his adaptability and innovative spirit, Matthew was able to work throughout the lockdown period, delivering over 350 online music sessions for this clients. He is now getting back to delivering sessions in person. However, he will continue to use online provision to connect with those clients for whom engaging with the outside world is simply too anxiety-provoking.
Stephanie Wheen – Gympanzees
Stephanie is a specialist paediatric physiotherapist who set up Gympanzees five years ago as a way to bring physical exercise and play opportunities to children with additional needs of any kind. She also wanted to create opportunities for disabled children and their families to play together out in the community as a way to reduce isolation and improve health.
The main goal of Gympanzees is to create an inclusive leisure facility that will be open 364 days a year and serve around 8,000 children per month. The centre will have multiple rooms including a gym, sensory room, indoor playground, café and other areas.
To prove the concept, they ran popup sessions in school holidays and had over 4,000 bookings in 58 days. The popups were massively successful, with some parents reporting big changes and health benefits after their children attended a session. The success of the popups also brought positive results to the organisation, which became a registered charity earlier this year and they have won several awards for their work.
Gympanzees were about to launch their capital campaign to raise funds to open their facility when the pandemic struck. Lockdown meant they had to cancel all events and therapy sessions and furlough some of their staff.
The team quickly realised that the lockdown would not be a short-lived situation, and that they needed to do something for the families they support. They launched OUR HOME, an online initiative featuring how to videos and other online content to help parents engage with their children. This included tips on how to play with your child, how to get them moving and exercising and other therapeutic advice. They also began to run Zoom therapy sessions/webinars to help parents with specific therapeutic issues such as activity and engagement and low muscle tone, and they have created a library of these sessions for parents and carers to access.
Gympanzees’ ethos is about play, movement and social interaction for disabled children. As they couldn’t run popup activities that children could access outside of the home, they decided to offer the option for families to borrow the equipment to use at home instead. The Gympanzees Lending Library was born.
The Library allows families to borrow highly specialised equipment to use in the home. The benefits are many – the equipment encourages play, fun and exercise but also gives families the opportunity to ‘try before they buy’ what can be very expensive equipment. This includes things like soft play shapes, swings, spinning chairs and an Eyegaze. The Lending Library equipment comes with information sheets on how to use each item. They have recently received a grant to buy a great deal more equipment.
The Gympanzees team learned a huge amount from the lockdown experience, and as with BAS, overall it has been positive for them. It has reinforced their belief that what they do has a therapeutic foundation. Therefore, they are currently updating their web resource to include disability-specific sections. At future popups, therapists will be on hand to answer specific questions from attending parents and carers. The lockdown also showed them how crucial research is to what they do, and that they must include the views of many parents and carers in developing their current and future plans.
Other pandemic experiences
After our speakers had presented, other attendees talked about their own experiences and things they had learned. Helen is a social worker who would normally visit families with autistic children at home. She shared how working with families online had helped them make greater progress with their children than she would normally see if she was visiting them in the home. Helen supports families with autistic children who exhibit challenging behaviours, and she felt that the online sessions improved focus and reduced anxiety for the children she was helping.
Speech therapist Rachel Browning from Talk Speech and Language Therapy talked about she and her team often support children in specialist schools. She told us that a positive of lockdown was that they were able to connect with parents who they normally wouldn’t see because their children are transported via coach or taxi to and from school. Rachel also reported greater engagement from children during online sessions, especially from secondary school age children who were taking part in social skills building groups. Despite the negative aspects of lockdown and a very steep learning curve in quickly adopting new ways of working, she said, ‘there have definitely been some pros, along with the cons, particularly with our relationships [with parents and children/young people] that we just didn’t have previously.’
Sarah Ambe, Complex Care Manager at Newcross Healthcare, told us that over lockdown many of her families were shielding for safety reasons and so refused care. She talked about how this made it especially important for her to connect with those families so they knew she was not just the person arranging care for their children but a friend to the whole family.
Immalee, a neurodivergent secondary school teacher told us that some of her autistic students were able to make exceptional progress with the work that was given to them. She feels this is due to the fact that there were no distractions, noise, sensory issues, etc., and the children were accessing the work from an environment they were comfortable with. Additionally, giving assignments online meant the teachers were able to list instructions logically in a way the students could follow one step at a time.
Huge thanks to everyone who took part in this session. We look forward to seeing you again soon.