Raising awareness to help neurodivergent children feel part of society

Jo Sugden wears many hats, as the saying goes. She is one of our patient transport service (PTS) team leaders and also occasionally picks up shifts as an emergency medical technician for our 999 service. When she is not attending to the people of the North West, she is at home caring for her son Frankie.

Frankie is 11 years old and at the age of seven, was diagnosed with autism. Autism is a lifelong developmental disability that affects how people communicate and interact with the world.

Before his official diagnosis, Jo was aware of autism so was noticing the autistic traits Frankie displayed from a young age. She said: “One of the traits was echolalia where he would repeat everything. He had speech and other communication delays, got fixated on things, and showed signs of a lack of empathy. He is very tactile and has to constantly touch things and run his fingers over objects.”

Currently, 150,000 people are on the waiting list for an autism assessment in the UK* and unfortunately, after waiting more than five years for a confirmed diagnosis, Jo can relate to the frustration many people on that list are feeling. She told us:

“It was very hard to get professional help, with resources so oversubscribed it took a long time to get him assessed. We knew that his behaviour was different but getting support with confirming what was going on for him was frustrating.”

As well as autism, Frankie was also diagnosed with behaviour disorders: attention deficit hyperactivity disorder (ADHD), oppositional defiant disorder (ODD) and dyspraxia – a developmental co-ordination disorder.

Receiving Frankie’s diagnosis was a huge relief for Jo and has helped him manage his day-to-day life. She explained: “He has got an education, health and care plan so he now has one-to-one support. He also has regular consultations with the Child and Adolescent Mental Health Services (CAMHS) doctors and has support from the paediatric team at the hospital. It has also enabled him to be prescribed the correct medication to help him manage the demands of the day - which we are still working on and have a long way to go.”

Jo says life has gotten slightly easier after receiving professional help and getting their cocker spaniels Buffy, Jarvis, Indiana, and Merlin - who Jo says are excellent

therapy for Frankie and them. However, juggling her job as well as caring for their son can be a challenge for both Jo and her partner. She said: “Juggling work and home comes with great difficulty as we can get a phone call at any time during the day to collect him from school if there have been any issues with him. Now I’m not on the road as often, it’s marginally easier as I’m invariably locally based and not on emergency patient-facing jobs where it would be harder to get hold of me. Working for the ambulance service on 12-hour shifts including nights is not easy for any parent which was one of the reasons I opted to take a post with a better home/work life balance in the patient transport service. It’s not as straightforward as letting a childminder look after him - it must be us or people very close to him so it’s important as parents we are close by to deal with any emergencies.”

Jo has learnt to take it one day at a time, especially as each day can come with a different obstacle. She explained: “There are ever-changing challenges for him, we can cross one bridge then something else happens. School is an everyday challenge because this is where he displays his most challenging behaviour. Our worry is this is going to be highlighted more when he starts secondary school in September. As he is getting older it’s hard to distinguish what parts of his behaviour are attributed to his autism or for other reasons due to developmental delay.”

Jo is hoping that by sharing Frankie’s experience, she can help raise much-needed awareness about the condition. She added: “It’s important to raise awareness as it is part of living in an inclusive society that people with autism can comfortably live in. It’s important for neurodivergent children to feel part of society rather than be treated like they are different and cannot integrate. It’s about society accepting and understanding differences and not being exclusive or fearful of what is deemed to be ‘different’. Our son is very social and quite often people (children) do not know how to take him, this would be less of an issue if people had more of an understanding of autism.”

*National Autistic Society