Young neurodivergent gamers tell CAMHS how to improve support: Focus on the cause, not just the symptoms

With Andy Smith, Spectrum Gaming

We recently came across a report from Spectrum Gaming, a charity based in Greater Manchester, about the experiences of some of their neurodivergent members who use CAMHS services. Spectrum Gaming is a supervised community for autistic young people aged 8-17 and many of the staff team are also neurodivergent. As well as offering safe online gaming, they’ve also developed a website, Autism Understood, to help people understand more about autism.

The report looks at how effective CAMHS support has been for the charity's members and offers recommendations for how the service could improve for those who do get accepted for support. It also includes a helpful “Inclusive Activity Toolkit” for those planning events to be attended by neurodivergent young people

We asked Andy Smith, founder of Spectrum Gaming, to tell us more about the report and their work. We’ve also included a couple of videos made by the group about how being autistic feels for them.

Why did we write a report about CAMHS? By Amdy Smith, Spectrum Gaming

At Spectrum Gaming, autistic young people frequently share with us their experiences of CAMHS (Child and Adolescent Mental Health Services). Sadly, these experiences are usually overwhelmingly negative, especially in relation to accessibility and treatments offered. We wanted to explore the issue in more detail and discover how services could reduce the barriers to participation, or how they might adapt their offer to better meet the needs of autistic young people.

We spoke to 31 autistic young people about what they thought needed to be changed and published our findings in a report, published in January 2024. We hope by amplifying their voices we can push for change so CAMHS is more fit for purpose. Autistic young people’s voices often go unheard, but coproduction is at the core of everything we do at Spectrum Gaming, so we feel privileged to share the views of young people who are typically underrepresented.

What did the young people think of CAMHS treatment?

Young people shared that the support they receive from CAMHS often centres around addressing the symptoms of their problems. For instance, if a young person is anxious about school, the focus is often on teaching them how to cope better with anxiety. Similarly, if a young person is depressed, the solution is often medication to alleviate the depression.

But even with medication and tons of coping skills, there is still only so much young people can cope with. Most have struggled a lot, and it can be really soul-crushing to wait a long time to access therapy to then be told they need to try and cope a bit better. Often young people are told they need to be “more resilient”, but autistic young people are often resilient enough, considering the amount of difficulties they often endure.

Young people say it’s really important when they’re experiencing mental health difficulties, the onus is not just put on them to ‘cope better’. Therefore we want services to consider: How much more effective would mental health support be if it focused on the root cause, rather than just encouraging young people to cope better?

Based on the findings in our report, we recommend a three-step process which reflects what young people said would be more effective in supporting them when they are struggling with their mental health.

Step 1: Identifying the root cause

Step 1 focuses on identifying the root cause of any difficulties that young people are experiencing. For example if a young person is anxious about school, what can school do to better meet their needs? Or if they are depressed, what can be done to help them get the joy, connection and practical support that they need to change this?

Young people say they’re used to being seen as being “the problem” and their views are often not listened to. Therefore, it’s important to encourage mental health services to really listen to young people and understand they’re already trying their best. Furthermore, CAMHS, which is held in high regard by other professionals, should be advocating for young people when it comes to working in partnership with others such as schools. If autistic young people felt truly listened to and advocated for, it would have an incredibly positive impact on their mental wellbeing.

Step 2: Psychoeducation

Step 2 focuses on psychoeducation, which involves learning about and understanding mental health and well-being. This is a really valuable tool for young people, however, it’s usually offered too late, as they are often only given access to CAMHS when they are experiencing a mental health crisis and are struggling too much to put it into practice. Therefore, young people suggest this step comes in only after they feel listened to and have had their needs met and advocated for.

It is also important that the psychoeducation offered to autistic young people is neurodiversity-affirming and services should review the material and strategies offered to young people. For example, we found almost all autistic young people had been asked to challenge their anxiety through ‘graded exposure,’ when the cause of the anxiety has been something they cannot actually challenge, such as a sensory difference. Young people are frequently pushed to go somewhere that is too loud, too bright, or too busy for them, with the aim for them to ‘get used to it’, but this only ever causes them harm.

Step 3: Appropriate therapy that works

Step 3 focuses on therapy offered to young people through CAMHS if they are still struggling after steps one and two. Many young people who experience autistic burnout, or who struggle in school, have significant trauma. Trauma therapy such as EMDR can be vital to help young people recover, but this isn’t offered as standard, even though young people who have massively benefited from it, feel it should be.

Another issue we found is young people often come up against the myth that ‘anxiety is part of autism’ and they are therefore denied treatment, but this is untrue. There needs to be a greater understanding of autism and anxiety within services. Spectrum Gaming has coproduced guidance on both anxiety and trauma, along with parents and professionals (including clinical psychologists), that we encourage services to share with their mental health support staff to address this.

Young people feel that a wider range of therapies should be offered, such as art or animal therapy, and more needs to be done to adapt therapy environments so autistic young people can access support. For example, a lot of autistic young people experience difficulties with talking, so can services consider how therapies could be adapted so that these young people are not excluded from support?

Furthermore, services should consider the physical environment, such as the brightness of lighting, and the information they share with young people in advance, such as videos of the building and information about the staff members. Many autistic young people struggle with going to an unknown space for therapy or support, making it inaccessible, but information in advance can help with this. However, for some young people, being able to access support online from home would help some of them feel much safer, and may be the only way they’re able to access the mental health care they need.

We hope that by sharing their voices through this report, we can reshape CAMHS to be more effective, responsive, and supportive for the mental well-being of autistic young people.

Links to further reading:

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