The benefits and challenges of listening to young neurodiverse people

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Author: Kerry Hunter, Early Years Neurodiversity Specialist and National Neurodiversity Youth Council Co-ordinator, ADHD Foundation

What we do

The ADHD Foundation is the UK’s leading neurodiversity charity, offering a strength-based, lifespan service for the 1 in 5 of us who live with ADHD, Autism, Dyslexia, DCD, Dyscalculia, OCD, Tourette’s Syndrome and more. We offer national training to schools online and in person, implement specialist therapy to children and adults online and in schools in Liverpool, and provide early years support for schools, teaching staff and nurseries to support young children who are showing early neurodiverse traits.

How we started listening to young people

My colleague Stephen and I both currently work with young people on a daily basis and understand the importance of listening to children and young people’s views. We have knowledge of the UNCRC, specifically Article 12 – which states that children and young people have the right to express their views, wishes and feelings in matters impacting them, and to have their views taken seriously.

At the ADHD foundation, we have always listened to young people’s views, but it was one of our long-standing young ambassadors J Grange, and our CEO Tony Lloyd who worked together to develop the National Neurodiversity Youth Council – a national forum of young people, aged 16-24, which aims to brings youth voices into the national conversation about neurodiversity.

J expressed his interest in creating a forum to ensure all neurodiverse conditions are represented, and believed that if we worked together as a community their voices would be louder.  J also learnt how to apply for funding for this project, and is a lead driver in what path the project takes.

Listening to young people to design the Youth Council.

In partnership with Autistica, Dyspraxia Foundation, Dyslexia Scotland, Tourettes Action and the Dyscalculia Network, we launched the Youth Council – and it was paramount that young people were driving this group. Young people have been involved with co-production from the beginning of the project. They have been learning new skills, creating policies, creating content on the website, writing manifestos and having media training to create the new neurodivergent leaders of the future.

The young people also co-produced their aims for change in the areas of health, employment and education through discussions at residentials.

Learning more about listening internally

Since November and since attending the Listening Fund’s Jamboree, we have also been evaluating how we listen to the ADHD Foundation’s young representatives internally.

We are currently supporting our team to involve our young people in recruitment processes, ensuring that the voice of the young person is considered and that the way this is completed is clear and transparent to the young people from the beginning of the process.

We are also prioritising building the trust of our young people and developing their confidence to go out the into the world and advocate for themselves: we are supporting children and young people in their schools and online, and each individual staff member puts the needs and views of the young people first.

One of the young people’s goals is to teach younger children about neurodiversity, to ensure knowledge and acceptance, so we are also in the process of developing a training session alongside young people. This will influence the training we give to early years and ks1 staff in a variety of settings.

One key area we identified for improvement is how to involve young people more in the running of the charity. There is room for a more centralised approach to listening to young people’s views, developing policies and services, and being committed to shared decision-making process with the young people.

Benefits of working with young adults with neurodiverse conditions.

The young adults we work with who have a neurodiverse condition have amazing talents, interests and skills. They are enthusiastic and can think ‘outside the box’ and solve problems in a way that a neurotypical person may not think of.  The ideas and enthusiasm that they have to make a change for themselves, and other young people is inspiring.

These young people have had challenging life experiences within the health and education systems and they are passionate about not wanting other young children, young adults or parents to go through the same experiences. Their passion for this is infectious!

They have energised the staff in our charity and partner charities to reflect on their own practice, and see how to improve young people’s participation in the governance and decision making of our services.

Challenges of working with young adults with neurodiverse conditions

One of the challenges of engaging with a variety of young people who have neurodiverse conditions is that they all have a different skill set but they also need supporting in very different ways. This has meant that when creating and sharing resources or tasks we have had to consider if the methods are neurodiverse friendly. For instance, ensuring that any paperwork is in dyslexia-friendly formats, that the young people can communicate in a way that’s suitable for them, and that they can be involved in tasks that suit their individual needs.  

We have learned that our young people who have a diagnosis of ADHD tend to enjoy dopamine-rich activities such as media interviews and taking the lead on the conference stand and networking. Whereas our young people who have a diagnosis of Autism may need more support in this area. Ensuring we can accommodate this difference, explore their skills, and provide new experiences and training is where we are building skills, experience and confidence as an organisation.

As co-ordinators for the youth council, we have had to be flexible when using these approaches and adapt to the young people’s needs to ensure that they can express their views and opinions in a variety of ways.  Although supporting the confidence of 20 young people with varying needs and preferences has been challenging, the benefits have outweighed these challenges. We feel extremely proud of everything they are achieving, and how we are able to change our practice to serve them better. The journey they have been on in the last six months has been amazing and inspires us to do more!

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