At Macmillan, we are proud to provide support to everyone affected by cancer. However, we know that some communities experience unique barriers to treatment and support.
Leeds Beckett University have been conducting important research into the unique challenges faced by neurodivergent people living with cancer. Include it here Some people feel unable to speak up about being autistic and articulate their individual support needs. These can include:
One participant from the study shares, ‘not everyone can cope with support groups as they find group participation difficult and stressful. An online peer support group would have helped myself and my son.’
We have also noticed members sharing challenges faced as neurodivergent people on the Online Community. However, with so many members it can be difficult to find others who have shared experience to connect to. That is why we have been working closely with the research team at Leeds Becket University to create a dedicated space for neurodivergent people with cancer.
This is a space in our community where you can access peer to peer support and share lived experience, advice and questions to those who understand what it is like to be neurodivergent. If you are neurodivergent and have a cancer experience, this space is for you.
You are welcome to continue using other areas of the community as well, we just ask that only those who identify as having an experience of neurodivergence use the Neurodivergence and Cancer thread.
To kickstart the conversation it would be great to hear your experiences. Perhaps share one or more of the following:
If you would like support in accessing and navigating the online community, our online community team are here to help. We also have help pages with lots of guidance on how to use the community. If you have any questions, please don’t hesitate to get in touch with us in the Online Community Team. You’re welcome to send us an email at community@macmillan.org.uk whenever you need us.
Hi Kay B
Thanks so much for sharing these insights! They are so valuable and hopefully others who are navigating this journey for the first time can take some of these tips away.
We noticed when working with the researchers at Leeds Beckett University that a lot of people did not understand they were neurodivergent until they had a cancer experience. For many, it is going through cancer and treatment that can really reveal an individual's neurodivergence and what support they'd benefit from most.
Do keep sharing your thoughts!
Emma (she/her)
Online Community Team
Emma (she/her)
Online Community Team
I opted to get my initial results over the phone as they were pretty sure it was breast cancer. So I then had the in person appointment a week later to discuss options. What helped me was already knowing I had cancer and telling the consultant that I was autistic (asperger's) he was really good with me and the letter he sent out to me and my GP really reflected that. My GP commented on how clearly explained everything was.
Thanks for sharing, GrumpySarah. That's a good idea regarding getting results over the phone so you can then discuss things further in-person.
For those of us who need time to process news/information, it can be so helpful to have that gap between being told something, and then asking questions about it.
I tend to find that my initial reaction to something can change after I've had a chance to think. Especially if the information created an emotional reaction. I find greater clarity when my feelings have settled.
Although I struggle to communicate with some of them and have found some friends (who I thought would be really helpful) standoffish. So struggling with that.
I'm sorry to hear some of your friends have been standoffish. It's possible they may need extra time to work out how to respond to you, as some people can be overly worried about saying the wrong thing.
Whatever the reasons, I hope you will take comfort in those friends who do understand. Keep leaning on them and being honest with them. 
All the best,
Matthew
Macmillan Online Community Team
Thanks 
Use the NHS digital Reasonable Adjustments Flags system. Ask your GP to enter the flags you need on to the system. Be specific.
Hi Kay B, I just wanted to say thanks so much for sharing this information. I actually had no idea about the Reasonable Adjustments system.
In case anyone else is curious, I found a short video about the system on the official NHS YouTube channel:
There's also this easy read guide (opens as a PDF document) direct from the NHS England site:
There are similar schemes for Scotland, Wales, and Northern Ireland:
Thanks again, Kay B!
All the best,
Matthew
Macmillan Online Community Team
Hi Eunice77
I'm sorry that you've been referred for further tests for skin cancer.
I hope that connecting with people who understand has been helpful. Please do keep chatting and let us know how you get on.
In this thread we've been talking about how neurodiversity might affect your cancer experience. If you feel this is relevant to you, you might want to consider some of the questions:
We're open to hearing from everyone with the aim of using these experiences to influence better cancer care.
