This piece was written with Dr.Char Goodwin who is the lead researcher for the Autistic Experiences of Breast Cancer research project, a three-year project funded by Breast Cancer Now. They are exploring the cumulative effects of autism-specific barriers to healthcare in relation to cancer care, directly from Autistic people themselves.

Katie Munday (me!) has been working on the What I Would Like to Say… project since 2022 exploring the experiences of cancer services of Disabled and Neurodivergent people (including screening all the way through to palliative care). I have reflected on this in more depth here.

This piece reflects on our fireside conversation at OUTpatients LBGTIQ+ Cancer Conference and comes directly from the questions we answered there.

What support is available, or should be available, for Autistic people?

Cancer professionals are often unaware that Autistic people are patients under their care. There are no national guidelines on how to support Autistic people with cancer and this needs to change.

Too often Autistic patients must advocate for themselves, often whilst experiencing pain and illness, adding to their cognitive load. Additional labor into educating cancer professionals whilst you are receiving care is exhausting and unnecessary. Relying on the Autistic patient to explain their needs and embodiments at every appointment with every new professional leads to further fatigue for patients and does not always guarantee consistency of care. The responsibility shouldn’t fall to the Autistic person to educate healthcare professionals at appointments.

There are things professionals can do to improve accessibility:

• Ask about the person’s information preferences – how much information, how often and in what style.
• Adjust for sensory sensitivities, including providing low sensory spaces for patients to decompress, low lighting etc.
• Provide choices to accommodate communication preferences and needs including giving time for processing, supporting lack of eye contact etc.

How can professionals better support Autistic people’s support networks, caregivers, and loved ones?

Autistic patients are likely to have Autistic family members. As an Autistic parent of Autistic children Char was very aware that they would need to be supported throughout their treatment, keeping things as familiar as possible and preparing for change. Char kept things predictable, or as predictable, as they could for them.

Autistic patients may also have other caring responsibilities, which can include looking after loved ones as they grow older. Therefore changing appointments and delays in care can have a massive impact on Autistic patients and their loved ones due to the preparation and planning involved.

Professionals sometimes assume that all Autistic people have access to support, including personal assistants. This, of course, is inaccurate. Even when Autistic patients do have personal assistants they may not want to use their allocated hours to access healthcare. Moreover, when Autistic people have extended stays in hospital this can cause their personal assistance package of care to come to an end. At the time that they need support, care and love the most, these patients can be left with a smaller support network.

how do you approach breaking down the issue of multiple barriers throughout a patients cancer care?

Barriers to healthcare exist for Autistic people. The longevity of cancer treatment means that Autistic people face these barriers to healthcare multiple times throughout their treatment pathway. So, let’s look at that in more detail…

• It starts at pre-diagnosis when you have had a screening recall or have symptoms that need checking. Many GP surgeries require a phone call to make an appointment, and using the phone can be very difficult or impossible for some Autistic people.
• Multiple appointments for tests, procedures, and treatment. The planning and prepping needed for those appointments and also the impact of delayed or cancelled appointments.
• Paperwork – appointments generate paperwork and there are electronic systems to navigate. Do I have the info I need in the way that I need it?
• Sensory – GP and hospital environments are often noisy with bright lighting and strange smells. Breast Cancer especially means multiple examinations and some Autistic people can find being touched difficult (this complicates autonomy and consent).
• Multiple healthcare professionals that you see throughout treatment (yellow arrow). Which professionals know about the heterogeneity of autism?
• The cancer treatment itself, surgery, chemo, radiotherapy, targeted therapy, hormone/endocrine therapy. What it is like to experience and the side effects related to those treatments.
• When side effects require hospitalisation and having to deal with all this when feeling very unwell.

These barriers occur in each appointment, multiple times throughout the cancer pathway and this is on top of the cancer treatment itself. Professionals need to take a individualised approach to broad spectrum of neurodivergence.

Do you experience any resistance to change when you self-advocate or make recommendations either personally or professionally?

Char: “In my follow up appointments, I make a decision when I arrive in clinic room whether to disclose that I am Autistic. I sense whether it is OK to do so. It can also depend on how I am doing because sometimes it takes all I have to just attend the appointment.”

Katie: “I don’t tell professionals that I am trans – I have no way of knowing whether there is resistance there because I don’t push it. I need to get care and I know that I will face barriers to this with just one bad experience of transphobia. I am “out” as Autistic in healthcare as it has more of an immediate affect on how I process information.”

Where, in your opinion, should things go next?

There needs to be national guidelines. The Autistic Experiences of Breast Cancer research project will be creating guidelines for healthcare professionals which we hope will be used by all healthcare professionals involved in cancer care.

There needs to be more Autistic and otherwise neurodivergent people involved in cancer service implementation and delivery. These are the most important voices for understanding our care needs!

---

Reflections on the accessibility of OUTpatients LGBTIQ+ Cancer Conference

Char: “I don’t find attending conferences easy but i really enjoyed speaking at OUTpatients LGBTIQ+ Cancer Conference. The Speaker Pack was really comprehensive, there was use of a quiet room and they sorted out the bright lights for our talk. I was really impressed, thank you Stewart and the OUTpatients team for making the experience accessible.”

Katie: “There was lots of information given to use beforehand on what to expect. This included pictures. This was sent out to speakers several times and understanding was checked throughout the process. The conference was very relaxed and people sat and listened and joined in in their own way. I’d love to go back again as a speaker, listener, or both.”