Letting parents know they are not alone

Created by VERCIDA for West Yorkshire Combined Authority

Kaysie Mclean talks about how an informal support group for parents of neurodiverse children is making a big difference at West Yorkshire Combined Authority

Before I joined West Yorkshire Combined Authority (WYCA), my background was primarily in travel. I worked overseas for a number of years – I was a holiday rep in places like Cyprus, Gran Canaria, Mallorca and Egypt. Then I stayed on in Egypt for three years as a quality manager in a large hotel. When I was pregnant with my son, I returned to the UK.

I started working for WYCA four years ago, after moving to Yorkshire from the Isle of Bute, a small island off the west coast of Scotland, initially as a travel centre team leader and then to support businesses to embed sustainable travel for their employees. For the past year, I’ve been a programme manager within our transport partnerships team.

As well as doing a very busy job with plenty of variety, I am the group lead for The PoD – Parents of the Neurodivergent – which came about after I attended a training session for recruitment and reasonable adjustments for neurodivergent employees. There were colleagues at the session who, like me, were the parents of neurodivergent children. Our conversations made me realise that other people had the same sort of struggles, issues and concerns that I did.

I thought it would be really good if we could all connect and soon, I had the support of other colleagues, as well as management. I had a chat with Jonathan, our diversity and inclusion officer, about how to go about setting up the group. We did a survey and talked to a lot of people, and found out that there were a lot of colleagues with different caring responsibilities – neurodivergent children, some diagnosed, some undiagnosed and people with parents who have conditions such as dementia, as well as neurodivergent employees. We decided to create three separate groups and, alongside colleagues, Helen, Emily and Saila I am a group lead for The PoD.

Now we do a monthly coffee-and-chat session, where we meet in person and virtually. It’s an open discussion – people talk about the challenges they’re facing or maybe they just need a safe space to vent. If you’ve got a question, you can reach out and ask the group for advice. Some people in the group have children with autism, some have ADHD, both undiagnosed or diagnosed, some people’s children are very young, some people’s children are older or have left school, so they can share their experiences.

Ultimately, we all realise that we’re not alone, we’re not the only people going through these challenges, especially when a proper diagnosis can take years with long waiting lists. As well as serious conversations, there is a lot of humour in the group, which is important.

The feedback we’re getting from the group is really encouraging. One colleague has said that the group is “completely invaluable” and given her the reassurance that she can always talk to someone about the issues she is facing, while another says the group is “like a pressure release valve, just talking to everyone in a safe space takes some of the mental load off.”

On a personal level, the group has helped me become a better advocate for my son. I have been able to talk to the school about making reasonable adjustments for his 11+ exams, so he can have a bit more time to do the exams in a quiet space, which helps with concentration. It is so important for parents to be taken seriously in these situations.

As well as our chat sessions, we have resources available online. We provide education and resources to signpost parents, guardians and carers to available services, as well as useful documents, podcasts, helpful websites and webinar recordings. An exciting project we hope to set up is a physical library, where all colleagues will be able to borrow books on various topics, including neurodiversity, to help foster more understanding.

Our next big event will be at the end of September for National Inclusion Week to educate colleagues and raise awareness. People will be able to use VR headsets to find out what it’s like to experience sensory overload and we will have an activity that focuses on masking. Girls in particular often mask to try and hide their condition. The event will include an art exhibition by neurodiverse children, because we want to move away from the narrative that is just about the challenges. We want to talk about the positives and the strengths that come with neurodiversity.

We are planning to have more external speakers talk to us on specific topics too, such as a webinar recording by Dr Naomi Fisher, a psychologist who specialises in issues such as school avoidance in children.

Intersectionality is another important topic to highlight, such as neurodiversity intersecting with gender issues, especially as more girls than boys go undiagnosed, as well as the prevalence of neurodiversity in the LGBTQIA+ community. We want to be able to support all neurodiverse individuals.

Ultimately, we want neurodiversity, whether it is about making reasonable adjustments for colleagues, or ensuring parents and carers have the support they need, to become part of normal, daily conversations with managers and colleagues – and to support and advocate for our children to succeed and be happy.