How are self-advocacy skills taught for medical consultations in autism?
Supporting autistic people to speak up in medical settings often starts long before the appointment. According to NHS England’s guidance on meeting the needs of autistic adults and the NICE autism guideline CG170, preparation, communication adjustments, and shared decision-making all play a central role in helping autistic children, young people, and adults take an active part in their healthcare. These approaches aim to reduce anxiety, improve clarity, and ensure each person can express their needs and preferences confidently.
Teaching self-advocacy starts with preparation
Many autistic people benefit from learning what to expect before a consultation. NICE recommends regularly exploring how involved someone wants to be in shared decisions, as outlined in its CG170 recommendations. Key workers or case managers, also recommended across NICE guidance, often support this preparation by helping the person identify what they want to ask, how they prefer to communicate, and any accommodations they need.
Strategies may include:
- Creating a short list of questions
- Practising phrases or scripts
- Using visual tools to organise thoughts
- Preparing sensory needs or reasonable adjustments
For some individuals, CBT-informed techniques can help reduce catastrophic thinking, as described in a recent peer-reviewed review. Families or trusted supporters can also help shape communication preferences where needed.
Tools that support communication in appointments
National guidance and autism organisations describe several tools that help autistic people advocate for themselves during healthcare encounters, including:
- Visual schedules or checklists
- Supported decision-making tools
- Advance preparation forms
The Five Good Communication Standards emphasise clear, accessible information and reasonable adjustments, and outline when referral to speech and language therapy is appropriate. These standards are published by the RCSLT.
Role of communication accommodations
Adjustments recommended by NHS, NICE, the National Autistic Society and hospital guidance such as this example from Plymouth Hospitals include:
- Allowing extra time
- Reducing noise and sensory stimuli
- Offering written or visual explanations
- Flexible appointment times
- Bringing an advocate or support person
These adjustments help reduce sensory and cognitive load so the person’s own voice can be heard clearly.
Evidence for outcomes
Peer-reviewed research (BMJ-linked review) highlights how autonomy and involvement in healthcare improves confidence and satisfaction. NHS-supported evidence indicates that Specialist Autism Teams improve communication and mental health outcomes for adults, as outlined in this NHS evidence review. Co-produced and peer-led programmes also support confidence and skills, as summarised in a Local Government report on self-advocacy.
The takeaway
Self-advocacy skills for medical consultations in autism are developed through preparation, personalised communication support, and meaningful involvement in decisions. With the right tools and adjustments, from healthcare passports to shared decision-making, autistic people can feel more confident, informed, and able to express what matters most during appointments.
