Effective conversations about medication for autistic children and young people and those with a learning disability

Parents and carers tell us it can be hard to get the right information and advice about medication for their child who is autistic, and/or has a learning disability. This guide is based on conversations with parents and carers and professionals. It provides information and tools to support effective conversations about medication.

Children should never be prescribed medication without a good reason. But many health professionals, parents and carers share a concern that autistic children and those with a learning disability are sometimes prescribed medication they don’t need. This is because when children can’t get the support they need, medication can sometimes be considered for the wrong reasons – to meet a ‘behaviour’ need, rather than a health need. This can make their health worse not better.

In other cases, parents and carers say they find it hard to have conversations with professionals about medication their child needs to be healthy and improve their quality of life.

That’s why this guidance supports the STOMP (Stopping The Over‐Medication of People with a learning disability, autism or both) and STAMP (Supporting Treatment and Appropriate Medication in Paediatrics) campaigns.

STOMP and STAMP exist to:

• stop the over-medication of autistic people and those with a learning disability
• ensure children and young people get the right medication, at the right time, for the right reason, and
• improve access to wider (non-medical) support that gives children and young people choice, control and a good quality of life.

Who is this guide for?

This guide aims to support good conversations about decisions to start, continue, change or stop medication for children and young people. It is for:

• Parents and carers of autistic children and young people or those with a learning disability.
• Any professionals who prescribe medication for children and young people who are autistic or have a learning disability, like a general practitioner (GP), pharmacist, nurse, psychiatrist or paediatrician.
• Other professionals supporting this group of children, like teachers, SENCOs, social workers, staff in child and adolescent mental health services (CAMHS) – anyone whose job it is to keep children safe and well.

What do we mean by ‘medication’?

People can mean lots of different things when they say ‘medication’. In this guide when we talk about medication we mean psychotropic medication – any medication that affects behaviour, mood, thoughts or perception – which is prescribed by a health professional. In this guide, we include medication that aids sleep (like melatonin) within that definition.

Psychotropic medication is used for a range of reasons, including to treat people with a diagnosis of:

• sleep disorder
• anxiety
• depression
• psychosis
• obsessive compulsive disorder (OCD)
• bipolar disorder

In exceptional circumstances medication may be considered without a specific diagnosis. This is covered in the section on decisions about medication in crisis situations.

This guide includes the following five sections, with families’ views, case studies, and practical checklists to use during discussions, throughout.

1. Why are conversations about medication more complex for autistic children and young people and those with a learning disability? - The importance of understanding communication, diagnosis, and exploring all support and treatment options
2. Parent and carers views about what works and doesn’t work in conversations about medication - messages from parents and carers about the importance being listened to and being given the right information
3. How to have effective conversations when medication is being considered - what do professionals and families need to understand during conversations about medication, in order to make good decisions
4. How to have effective conversations when medication is started for the first time - what do families and professionals need to be clear about when medication is being prescribed
5. The importance of medication reviews and how to get the most out of them - when reviews should happen, who they might be with, and the aim and structure of the conversation