Neurodiversity and cancer: getting information and support

Neurodiversity describes the different ways people think, learn and process information.

Neurodivergent people may communicate, process information or experience the world differently to people described as neurotypical. Around 15% of the population are neurodivergent.

Types of neurodiversity include:

• Attention Deficit Hyperactivity Disorder (ADHD)
• Autism
• Dyscalculia
• Dyslexia

Being neurodivergent can affect how you experience healthcare environments. For example, busy waiting rooms, unclear information or unfamiliar medical procedures may feel overwhelming.

Jessie, who is autistic, described this experience when talking about cervical screening on our Cancer Professionals podcast:

“It’s the difficult sensory environment of the waiting room, whether it’s your GP or whether it’s a hospital. And it’s also difficulties around being able to identify what’s going on in your body and then trying to communicate that to someone else.”

You do not need a formal diagnosis for your healthcare team to support you. 

Listen to Jessie’s story

Jessie shares more about her experience in our podcast episode.

Hospitals and clinics can be busy and noisy places. Bright lights, crowded waiting areas and unfamiliar equipment can sometimes make appointments stressful.

Some neurodivergent people may experience sensory sensitivities. This means sounds, lights or movement may feel more intense.

Helen shares her experiences:

“I find waiting rooms hard because of noise, movement and lights. My healthcare team were happy for me to sit somewhere else or use headphones.”

Small changes can sometimes make a big difference. For example, you may be able to:

• Wait in a quieter area.
• Use headphones or comfort aids.
• Receive information before the appointment.
• Have extra time during appointments.

When you are first diagnosed with cancer you are given a lot of information. This may be shared on the phone, in written materials or in person. 

It can be hard to understand and remember everything.

You can ask for the information in a different way. Understanding your cancer and treatment options is important.

You might find it helpful to ask for:

• Written information to take home.
• Information before your appointment so you can prepare.
• Explanations using simpler language.
• Extra time to ask questions.

Read our guide to support to understand information.

We provide a range of support services:

• Call the Macmillan Support Line for free on 0808 808 00 00, open 7 days a week 8am to 8pm. If you’re unsure what happens when you call, this guide explains what to expect.
• You can also use our online chat or email us.
• Visit our Online Community forums to connect with others.
• Access audiobooks and easy read versions of our booklets.

Telling your healthcare team about your neurodiversity can help them support you better.

They may be able to adapt appointments or communication to meet your needs. For example, you could ask for:

• Information before appointments.
• Clear explanations of what will happen.
• Extra time during appointments.
• Quieter waiting spaces.

You can ask your healthcare team whether they have received neurodiversity training. The Curly Hair Project and other organisations offer this. 

Hospitals also have patient support services that can help you understand your NHS care and support you. These include:  

• PALS (Patient Advice and Liaison Service)
• PASS (Patient Advice and Support Scotland)
• Northern Ireland Patient Council

Some hospitals may allow you to visit departments before treatment so you can see the environment and equipment in advance.

Some cancer treatments involve unfamiliar machines or environments. These can feel overwhelming.

Naman, a radiographer, explains that adjustments can help support neurodivergent patients:

“People with neurodiversity undergoing radiotherapy can face unique challenges due to heightened sensitivities to sensory stimuli, such as the loud noises and bright lights associated with medical machinery. These stimuli can lead to increased anxiety, making long appointments particularly difficult.

To counteract these difficulties, offering extended sessions, allowing patients to visit the clinic before treatment to familiarise themselves with the equipment, and holding open evenings to address concerns can significantly ease the process.

Where possible, headphones, fidget spinners and other comfort aids can be used.”

Personalised care is important. When healthcare teams understand your needs, they can help you feel safer and more comfortable during treatment.

You can usually bring someone with you to appointments. This could be a family member or friend.

Having someone with you can help you:

• Remember what was said.
• Take notes.
• Ask questions you may forget.

If you are told you cannot bring someone, you can ask why and what other support is available.

Sunflower lanyards and hidden disabilities

If you are a neurodivergent cancer patient, you may find it helpful to use a sunflower lanyard when attending appointments or travelling to and from treatment.

The sunflower lanyard scheme aims to help people with non-visible disabilities get support in public places. Some people have medical conditions or disabilities that are not easy to see.

They may wear a green lanyard, wristband, or badge. This badge has a sunflower design. This shows they have a hidden condition and may need extra support.

Many UK organisations, shops and travel companies understand what the lanyard means. You may find it helpful if you need extra support while you are travelling in the UK.

Living with cancer can affect how you feel emotionally. Being neurodivergent may also affect how you experience and process those emotions.

There is no right or wrong way to feel. Talking to someone can help you feel more supported and less alone.

Things that can help:

• Speaking openly with your healthcare team.
• Getting in touch with the Macmillan Support Line.
• Using our Online Community forums to talk to others with lived experience of cancer.
• Focusing on your wellbeing and what coping strategies work best for you.

Everyone’s experience is different. Focus on what helps you cope.

1. Ask for adjustments if appointments, communication or environments feel difficult.
2. Take information at your own pace and ask for things to be explained again if needed.
3. Reach out for support if you want to talk things through.

We have information about:

• Cancer and your emotions
• Talking about cancer

Other organisations who can help

• ADHD UK
• Autism Central
• National Autistic Society health passport
• British Dyslexia Association

This information has been written, revised and edited by Macmillan's Digital Content Editor team and checked by Macmillan's Cancer Information Development team.

Learn more about our Digital Content Editors and how we produce our cancer information.