We know that moving to adult services raises can cause anxiety for young people and their parents. For neurodiverse young people, that anxiety can be increased. Here Aoife Marley, a psychologist at Birmingham Children’s Hospital looks at the steps which can be taken to address this.
For young people with neurodivergence, transition can produce extra challenges. Transition is a time of huge change, regarding many aspects of care: change in environment; team changes; a different way of receiving care; increased independence. For neurodiverse young people, and their families, this can cause extra worry and stress about how they might cope with these changes as well as uncertainty about what the future may look like.
Young people may find themselves worrying more about how things will be different and how they can navigate this new environment. They might also have concerns about meeting new professionals and not being understood. For neurodivergent young people, it might feel like they are leaving the safety and familiarity of paediatric care.
Parents and guardians may also face similar worries about new teams and change. It can be a difficult time, where caregivers may worry about how their child will cope with the changes, and how they will be able to manage their child’s additional needs in a completely different setting.
Focus on what we know
Excessive worrying often stems from uncertainty. Our brains seek predictability and safety in the things we know. Therefore, when things feel uncertain, our brains tend to jump to conclusions and fill in the gaps, often focussing on the ‘worst case scenario’. We do this to try to increase our certainty and safety, but it ultimately makes us more distressed.
For some young people and their families, this may be what happens during transition, as there will be lots of unknowns. To combat this, it is helpful to focus on what we do know and what we can control.
- When attending transition clinics try to find out beforehand what to expect, what might be discussed, and what might happen.
- Think about any questions you have and what you want to know.
It might be helpful to consider touring the adult hospital you are transitioning to, to increase predictability and safety - Request to meet the transition team and some members of staff at the adult hospital – meeting them early will allow you to know what to expect and reduce the amount of change happening in one go
- Be prepared – make sure you have any resources you need and ensure the new hospital has the hospital passport and are aware of any needs
- Work up slowly but surely – use the ready, steady, go framework in the paediatric centre to prepare you for transition
https://eput.nhs.uk/ready-steady-go-transition-programme/ - Things might be difficult – that’s okay – be prepared for transition clinic and visits to be tricky, plan ways to destress after
- Check out other transition stories
- Talk to your young person about what to expect
- Communication is key – keep an open dialogue between parents, young people, and professionals.
It is useful to consider that different young people with different needs may need varying things at the time of transition.
Timing
For some young people, knowing what may happen sooner rather than later is better, as it allows them time to mentally prepare and become accustomed to the idea of change. It also allows plenty of time for them to think about anything they might need to know or any question they have. Other young people might not cope well with the long transition phase and find that it exacerbates their worries.
It might be helpful to begin these conversations in early teenage years, this will allow families to begin to develop the skills needed in adult care, such as communicating needs and knowing medications, depending on the young person’s needs.
For a lot of families, by the age of 16, young people are somewhat independent and are able to have serious conversations about transition. This might look a little different for those with additional needs or neurodivergence and it is important to remember that you are an expert in your family. Slow and steady if often the best approach, but it is worth finding what works for you.
Additional resources
It might be useful to utilise some kind of feelings wheel, chart, or cards, as an easy way to check in with each other about how the conversations about transition are feeling. It is an easy way to open a dialogue and express emotions that might otherwise be difficult to verbalise.
Try relaxation scripts and mindfulness exercises to help regulate the body before and after appointments. Below are links to some resources you may find useful.
Mindfulness Exercises for Neurodivergent People — THINKING PERSON’S GUIDE TO AUTISM
Autistic and Neurodivergent-Friendly Mindfulness Practices | Time Timer
The NEST approach
The NEST Approach | Spectrum Gaming
Supporting Your Child with Big Feelings
