The island’s three main autism groups are shining a light on the range of support that is available to those with additional needs.
With many struggling families calling for more support, faster diagnosis and a more holistic assessment for their child’s individual needs, local support groups wanted to let people know about the help that is available in Guernsey.
‘Quite rightly, it’s important to raise awareness around the issues parents and carers are experiencing on a daily basis with children who are autistic, neurodivergent, and the various disabilities that can come with these conditions,’ said Lorna Higgins-Bare, co-founder of online support group Autism & Me.
‘But we just want to reach out to anyone who might not have heard of us, to let them know there is some support and please let us introduce ourselves.
‘Autism is a spectrum condition. It presents differently in every single person. Therefore, it’s really hard to find one service that is actually going to meet everyone’s needs all the time. That’s why I have a little bit of empathy for Education and the States in the diagnosis process. It’s not black and white, and I would much rather that the process was more accurate and thorough, to ensure the parents get the right information, diagnosis and follow-up support. I think we do need to give a little bit of leeway.’
She said her son was diagnosed with autism in 2020, aged four, and she thought that hearing only negative stories about people in her situation could have been detrimental to her back then.
‘It would’ve left me with little hope for our future, and it concerns me that there might be others currently seeking a diagnosis – for themselves or their child – or who have recently received a diagnosis, who might feel that there is no support available to them. We want them to know that there is.
‘We have multiple organisations here, and we work together to hopefully ensure that everyone can find what they need – which might mean a combination of us all.’
Autism & Me helping families with autistic children to ‘find their tribe’
An online support group is helping families with autistic children ‘find their tribe’ on the island.
The private group, Autism & Me, was set up five years ago by two local mums, Lorna Higgins-Bare and Antonia Rainbow, who both have autistic children. They wanted to raise awareness, understanding and acceptance around autism, and support other affected parents and families to feel less isolated and to build their confidence.
‘The best way to make you feel more comfortable with the things you’re experiencing is to find your tribe,’ said Mrs Higgins-Bare.
‘Finding others who have faced similar experiences unlocks an opportunity in the world. When you’re trying to compare your autistic child to a child who isn’t – you’re constantly trying to fit into a story that you never feel like you’re achieving.
'You’re not hitting the milestones, you never feel satisfied and you constantly have that heavy feeling in your heart that you’re not being a good parent – “what am I getting wrong?”
'When you find your tribe, it’s like a weight lifts off you. Things start to make sense, and you actually feel like you’re living again. We want families to know that there is more than one tribe out there on the island for them.’
The group holds autism-friendly events and provides a shared network to create inclusive social opportunities for both parents and children.
There are currently more than 800 members in the private group and it continues to grow. Mrs Higgins-Bare said the group complements the professional services currently available on the island, but with such high demand, she would like to see more resources to enable further support.
‘As awareness and diagnosis of autism continues to grow on-island, I would encourage the States to invest in accessible, creative, inclusive peer support opportunities that recognise the value of lived experience alongside professional expertise,’ she said.
‘Everyone has a role to play in creating welcoming communities where autistic people feel understood, respected, and empowered. By strengthening peer connections, communities can help ensure that no individual or family has to navigate their journey alone.
‘We have been organising social events and activities for the autistic community since we started the group and the turnout is impressive with the majority of our events being fully booked within hours.
‘These events provide vital social opportunities to families who usually wouldn’t be able to access them for a variety of reasons.
‘Fundamentally ensuring a safe space for all and fostering an understanding environment is key to making these events so successful.'
The group arranged several popular events over the summer.
‘You do not have to have a diagnosis to access an initial consultation with us’
Adults and children with autism – diagnosed or not – can build resilience to cope through life’s stressors with help from Autism Guernsey.
The charity was set up 14 years ago to support such individuals, and their families, who do not have associated learning difficulties. It currently supports about 250 islanders, and though it receives medical referrals, it also invites anyone to get in touch.
‘You do not have to have a diagnosis to access an initial consultation with us,’ said chairman Andrew Warren.
‘But the services you’re then able to access depend on the individual needs and, partly, on our resources.’
As well as helping the individuals make sense of their emotions and build valuable life skills, AG also aims to create an autism-friendly world. Its popular programmes for parents, and training for commercial organisations, government bodies and other third-sector organisations, work to raise awareness and understanding of autism – to improve the quality of service to autistic clients, and support for autistic employees. Its services also include a variety of social club activities, and one-to-one support – particularly for adults, helping them live independently, transition into the workforce, find employment, and thrive in their current jobs.
Other than some funding from the States for its parent programmes – less than 5% of annual turnover – the charity relies on grants, donations and fundraising. Mr Warren said this, and its limited staffing levels, restrict the amount and range of support it can provide.
‘We currently have the equivalent of four full-time employees, most of whom have clinical qualifications,’ he said.
‘We want to offer positive reassurance to any parents or individuals out there struggling with autism that there is support out there for them, but we also need to be realistic about what is possible within the available resource. We would love to be a bigger organisation, because we recognise there is a continuing need for more support for individuals and families.’
Autism not only affects how an individual perceives the world, but how they understand and respond to the bodily signals sent to their brain. AG will soon be introducing a programme for children focusing on ‘Interoception’ – to provide a greater understanding of these physical sensations and emotional responses.
Wigwam supports people with neurodivergent disorders and those with learning difficulties
Wigwam works to ensure that all local children can enjoy group activities and events, providing playful opportunities that consider their unique, additional needs.
The volunteer group was set up in 1999 by parents of children with significant additional needs.
In a bid to offer support, friendship and information, the charity came together to organise inclusive events and safe spaces for all families.
In 2018 it was revived. It hired a family support coordinator to work primarily with individual families, giving professional support from experienced local practitioners.
Wigwam currently has more than 250 families registered, with more than 280 children with additional needs.
It supports those with a variety of neurodivergent disorders and/or learning difficulties.
‘We don’t categorise people,’ said chairwoman Susie Gallienne.
‘We take mainstream activities, and adapt them so everyone can join in.
‘Not all children can participate in structured sessions.’
Wigwam spent two years building an adapted play area in the Edible Guernsey greenhouse, which was completed last year, which its families can book. It also has an electric cargo bike that can be borrowed for up to four days at a time.
Mrs Gallienne said it is currently working with the States to make the Cambridge Park playground safer and more accessible for children with additional needs.
‘We get great support from lots of community clubs and groups when parents ask us for things,’ said Mrs Gallienne.
‘Through their help, we’ve tried many different things over the past eight years – working out what parents, in general, want and what they don’t.
‘We’ve found that most of them really want more individual sessions – without the pressure of committing to multiple sessions, in case the activity or event doesn’t suit their child.’
Anyone interested can email support@wigwam.org.gg.
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