Working in a CAMHS Neurodiversity Service

"I just want to understand my child," Billy thinks as he completes a referral for his daughter, Daisy. He is hopeful that an assessment from the autism team will help him understand her needs. Billy understood that there was a long wait for NHS CAMHS services. He knew this would be hard. He spent the next couple of years attempting to support Daisy by talking to her SENCo and attending support groups in his local area. After reaching out for some advice from the service, an Assistant Psychologist called and offered some helpful suggestions. However, with limited contact from CAMHS throughout the wait, he continued to feel anxious about the assessment and what a diagnosis would change.

When Billy received the text message about booking in the appointment, he quickly phoned and booked the assessment he had been waiting for. He felt like this would provide all the answers he needed.

On the day of the assessment, he felt a mixture of nerves and anticipation as they arrived knowing that both him and Daisy would be speaking to clinicians from the team. Billy was eager to get some answers after the wait.

When they sat down with the Speech and Language Therapist and Clinical Psychologist, they were asked, "Why do you think you're here today?" and, "What do you know about autism?" Billy listened as Daisy spoke about her own experiences, saying, "Compared to my friends, I think I'm weird. I don't fit in." Billy felt saddened by this and wondered if this answer would have been different if they had been seen before Daisy went to secondary school, like he requested at the time of the referral.

Billy listened to both clinicians and was surprised to hear that they may not be able to make a decision on a diagnosis that day and that it could even be a few more months if more information was needed. Billy hoped that the answers to the questionnaires that he and the school filled out would be enough to get the answers he needed.  

Following this, Billy and Daisy went into different rooms with a clinician each to complete the two outstanding parts of the assessments. Billy answered questions and did his best to remember examples from when Daisy was younger; he felt supported through this, and the Clinical Psychologist gave him the time he needed to think and answer. After what seemed like a lot of talking, the psychologist took Billy back to the room where Daisy was chatting and doing some drawing with an Assistant Psychologist. It was decided that they would go to the café for 20 minutes whilst the clinicians reviewed the information that they had gathered. Billy was curious about the assessment that Daisy had completed and wanted to talk to her about it. Daisy said, "It was really fun, Dad. I got to play some games and we chatted a bit."

Back in the room, Billy was relieved to hear that the clinicians had been able to conclude the assessment with the information that they had, and that Daisy meets the criteria for autism. Relieved to hear this, Billy asked, "What now?" The clinicians talked through a variety of signposting information and support, but Billy had been hoping for more. He spoke about Daisy's struggles with anxiety and the clinicians suggested a referral to another team who could support him with this. Unfortunately, there was another long wait before she would be seen. Billy was frustrated by this, as he had already waited for so long. They had a chat about what may support Daisy best as she was not sure herself what would help her. Billy felt that he had been listened to by the clinicians who had suggested some helpful resources and strategies to support Daisy.

The clinicians handed Daisy a leaflet with some positives of autism and spoke about her strengths that had noted during the assessment. They also noticed that Daisy enjoyed rollercoasters, and suggested that with a diagnosis she could apply for fast-track access at the local theme park. Daisy was very happy with this, and Billy was pleased to see her smile.

Learning from others

Experiences like this are common; people have to endure long waits before they get an assessment and it's often later than they would have wanted for their child. Our service has seen a massive increase in the number of referrals for both autism and ADHD assessments, which has increased waiting times. Our clinicians work hard to validate the feelings of both the young people and the parent/carers and work with local organisations to support them pre- and post-diagnosis.

Our multi-disciplinary team consists of a mixture of clinical psychologists, speech and language therapists, occupational therapists, specialist nurses, social workers, assistant psychologists and our admin team. Working with so many professions provides plenty of opportunities for learning from one another and case discussions are always very interesting to hear different perspectives.

There are many positives to working within a neurodiversity service; the most important being the people that we get to work with. The families and young people have often waited a somewhat lengthy period for an assessment and are so appreciative when they reach the top of the list, and we admire all of them for different reasons. As advocates for their young people, all parents/carers want what is best for them and most have been able to access services that have supported them during the wait. The young people themselves have been navigating a world and education system that is harder for them to access, without having a 'why'. Being able to meet, talk and listen to them at the assessment is always very rewarding.

As a service, we understand the importance of early intervention and support. However, with long waiting times, we know that families can find this challenging. The system can be complex and unknown to many, and our service aims to make the process and organisations available to them as clear as possible. At this early stage, we would encourage families to access autism friendly approaches and strategies and provide signposting to our local partners. To support our young people to feel listened to and validated, we discuss the positives of autism at the point of assessment and ascertain what the young person already knows. We hope that this open conversation will support them to understand themselves better and provide support for parents who chose to have this conversation with their young people at home. We want to understand what our families think of this process and are taking steps to design and facilitate focus groups with a range of people involved, so that we can further improve our service.

Challenges and limitations

We do find that there are many challenges and limitations within the service too. Having a long waiting list means that it can be difficult to find more time to explore the young person's feelings around their diagnosis. We felt that it may be interesting to ask, 'what did you have to do to survive?' (from the Power Threat Meaning Framework) with some young people who would like this option; this could allow them to explore the strategies that they have adapted to help themselves to cope in a world designed for neurotypical people. Coming from an assessment point of view, we are inherently deficits-based, but we are trying to challenge parts of this to become a more needs-led service. One way we think this can be done is through our use of language. Within our service, we feel that it would be beneficial to move away from language such as 'difficulty' and 'deficits' in our feedback to families and in the reports that we write and move towards considering why the person is presenting in this way.

People often don't realise that as an assessment service, we are not commissioned to offer interventions ourselves. This can be hard for us, as we see and hear first-hand how difficult some families' experiences can be. We rely on local organisations supporting the families that are on our waiting lists. Working with the organisations and seeing the training and support that they are able to provide for parents/carers and professionals really supports our service. Some don't realise that when waiting for an assessment, there are many resources that they are able to access before they receive a diagnosis. We do feel that this can be a bit of a 'postcode lottery' at times: some people will have better access to these organisations and resources because of the area that they live in.

We have also found that schools are often lacking in their knowledge about neurodiversity, and there are many misunderstandings. Speaking to schools, we often see school staff comparing young people to other children and not recognising some of the more subtle signs and behaviours, particularly in girls. We find that teachers are often responsive to learning more from us when we speak to them about specific young people, but we feel that there is a bigger need to address this across the country.

As a service, we are aiming to meet some of these challenges. For example, in response to misunderstandings regarding neurodiversity and the need for further teacher training, we are currently in the process of setting up school focus groups (to find out training needs) and creating a newsletter for families, schools and GPs to keep them up to date and to better educate them about neurodiversity.

Working with neurodiversity is incredibly rewarding and varied. Assessment services are very busy and are currently showing no signs of referrals slowing. We hope that we can positively influence our service by educating others, validating people's experiences, and changing the language that we use both to our families and in our reports.