Nov 26, 2022, Aberdeen Press and Journal: Aberdeenshire parents share concerns about ‘diagnose and dump’ approach to autism services https://www.pressandjournal.co.uk/fp/education/5065579/aberdeenshire-parents-share-concerns-about-diagnose-and-dump-approach-to-autism-services/
Scotland Last month, Aberdeenshire parents Neil and Jade Ritchie shared their struggles to find the right support for their autistic son.
The family say they were left to “feel their way in the dark” due to a lack of joined-up autism services in the north east.
Their story sparked a huge reaction from other Aberdeenshire parents. Many wrote to the P&J to share their own experiences, while others posted on a private support group for parents of autistic children.
The theme was consistent. Emma Morton compared autism services to “navigating a battlefield” while others said they were “dropped off a cliff” following diagnosis.
Their words are emotive, but they’re backed up by action. One mum has created a free online course, and another started her own consultancy.
Phionna McInnes reached out to tell the P&J about an enterprising charity she set up with her autistic son, Declan.
Phionna and Declan established We too! in direct response to what she calls a “diagnose and dump” mentality to north east autism services.
Declan’s powerful words inspire drive for change…
Phionna decided to take action. With £500 in savings, she managed to secure another £2,500 from Aberdeen City Council. She used this investment to create a free, ‘what’s on’ magazine listing north east groups offering relaxed sessions in the school holidays. It also provided details of training and benefits that parents and carers may be entitled to.
The initial print run reached 6,000 people but unlocked a big demand for more. Phionna and Declan registered Me Too! as a charity and set about creating a summer holiday edition. The ultimate aim? “To prevent other families feeling the way I did,” says Phionna.
Early autism support can prevent a crisis
Today, the charity publishes a 32-page, A5 glossy magazine for local parents of disabled children. However, what started out as a “mapping exercise” has become a mission to fill the gaps.
This wider vision is reflected in the new name, ‘We too!’. Again, Declan provided the inspiration by telling Phionna that what started as “just me” now has a much wider reach. He told his mum to turn the M upside down and make a ‘me’, a ‘we’.
The charity now works directly with groups to improve accessibility. Phionna and her team of ‘ninjas’ (she prefers a light-hearted, non-corporate approach) provide training and support to help organisations run relaxed sessions. These cater to children and young people with a range of additional support needs….
The team also runs a drop-in centre for parents and carers at Aberdeen Trinity Centre, offering a variety of groups – the Dads Lego Club on a Saturday morning is a particular hit.
Asked what she would like to see change, Phionna doesn’t hesitate. “Less replicating of the model when it comes to support services,” she says. “This would give a better selection of opportunities.
“All too often, the local authority is reactive rather than preventative. A small self-directed support budget could make a huge difference to many autistic people, rather than waiting until they hit crisis points.”
Parents’ group highlights long journey to diagnosis – and beyond
Early intervention for autism is a recurring theme across peer-to-peer support groups in the north east.
Alison Murray founded the Facebook group “Autism and other conditions Aberdeen” (AOCA) in 2017. While Phionna has referred to a “diagnose and dump” problem in autism services, Alison highlights that diagnosis is not the beginning.
“For children, support needs to start well before diagnosis and as such can’t be restricted to autism, ” she says. “It doesn’t start at diagnosis – that can often be years down the track.” Alison says the most common concern raised by parents on the AOCA page is the lack of educational support for autism in the north east….
Neil and Jade Ritchie’s story sparked a lively debate on the page.
“Around 43% of our school population is recorded as receiving help with additional support needs, and that help is shaped around their unique needs and circumstances,” said the spokesman.
Phionna McInnes set up a north east charity inspired by her experiences with her autistic sons Declan (left) and Rogan (right).