Recruitment for our survey is now closed.
Thank you to everyone who participated, shared or reposted about the survey. The more people are aware and understand autistic experiences of cancer diagnosis and treatment, the better.
Please share widely.
We are still recruiting to our survey exploring autistic people and people who are not autistic experiences of breast cancer diagnosis and treatment in the UK. Thank you :)
Call for participants. What is the project about? This survey is part of the wider Autistic Experiences of Breast Cancer research project. With this part of the project, we are exploring the breast cancer experiences of autistic and non-autistic people who have a breast cancer diagnosis to see if there are any similarities or differences in their experiences. Who are we looking for? • Autistic people (diagnosed or self-identify) • Non-autistic people • Aged 18 years or older • Been diagnosed with breast cancer (including DCIS and secondary/metastatic breast cancer) • Diagnosis and treatment of breast cancer in the UK What would it involve? • Filling in an online survey • This could take around 20-30 mins to complete • A code word is provided to you and you will be asked for the code word at the start of the survey. This is to help reduce the number of non-genuine participants trying to access the survey, including bots. Code word and More Information Email aebcstudy@exeter.ac.uk for survey link and code word. For more information, please scan the QR code or visit aebcstudy.co.uk Lead researcher: Dr Char Goodwin. University of Exeter, FHLS Psychology Ethics Committee ref: 12200553 Logo's: Autistic Experience of Breast Cancer, Breast Cancer Now, University of Exeter
Call for participants!
We are currently recruiting for participants to take part in a survey exploring autistic people and non-autistic peoples’ experiences of breast cancer diagnosis and treatment in the UK to see if there are any differences or similarities in their experiences.
The Autistic Experiences of Breast Cancer research project is now on Bluesky, please follow to hear about the research we are doing to explore autistic people's experiences of breast cancer. Thanks
to focus on giving myself more time to do the activities I enjoyed to help me get through the wait. The Autistic SPACE framework www.magonlinelibrary.com/doi/full/10.... from @autisticdoctor.bsky.social not cancer specific but you may wish to share with your medical team. Take care and best wishes.
Thanks Ann. We will be producing guidelines as the outcome of the project which I appreciate won’t be helpful to you right now. There is a Self Advocacy Guide that might be useful www.autismcanada.org/advocacyguide. From a personal perspective the scanxiety waiting for results is tough. I tried /
@georgiarivers.bsky.social and I can finally share our Cervical Screening for Trans+ Autistic People: A Self-Advocacy Zine
#AutResearch #AutismResearch 🎓🌈
autisticltd.co.uk/2025/06/13/c...
Had my last Zoladex injection today. Mixed emotions. Glad to have reached 5 years past diagnosis and that my endocrine treatment will finish soon. Feel apprehensive over what will happen now. My routine is changing and I don’t know how my body will react. #AutisticHealthcare
#cansky
Ain’t that the truth!
Thank you, just reached 5 years since diagnosis. Waiting for annual mammogram. Always a stressful time.
Thank you so much. I have liked the Cancer feed.
Hi, is it too late to be added. I’m an autistic researcher exploring ways to improve cancer care for autistic people. Also had a breast cancer diagnosis myself.
Hello, can you send me an email at aebcstudy@exeter.ac.uk and we can chat there. Is that ok?
Hi, no problem at all. There needs more research about autistic and otherwise neurodivergent experiences of cancer. I would love to connect, thank you.
Yup, I’m here. I need to post more though. Thanks for mentioning me.
Hi, happy to chat about the project.
Please take a look at this blog post by @kmunday.bsky.social and I discussing healthcare barriers in cancer care for autistic people. Based on our fireside talk at OUTpatients LGBTIQ+ Cancer Conference
#oncsky #cansky #medsky
A participant recruitment advert looking for people who are aged 18 years or over, autistic (diagnosed or self-identify), been diagnosed with breast cancer (including DCIS and secondary/metastatic breast cancer), diagnosis and treatment of breast cancer in the UK, Finished active hospital treatment for initial breast cancer diagnosis (we would also like to hear from individuals on long-term treatment). We will be interviewing 8-12 autistic people who have had a breast cancer diagnosis and treatment in the UK and we are keen to explore a range of experiences. We would particularly like to hear from autistic people who are from diverse ethnic backgrounds; are trans or non-binary; people with a learning disability; of different ages who, who have had a diagnosis of various types of breast cancer. To find out more about more go to aebcstudy.co.uk, or email aebcstudy@exeter.ac.uk Lead-Researcher: Dr Char Goodwin University of Exeter, FHLS Psychology Ethics Committee: ref: 6892841
Autism Research Study!
Participants needed for an interview study exploring the experience of breast cancer diagnosis & treatment as an autistic person (in UK)
Interview questions have been co-designed with our Lived Experience Advisory Group.
To find out more please go to: www.aebcstudy.co.uk
Menopause is an oft-overlooked autism research topic. The Bridging the Silos: Autistic Menopause project asks "how autistic people experience menopause and how they can better access information, services, and supports that might help them."
autisticmenopause.com
I was autistic when I was a kid and everyone called me “quirky”
I was autistic when I was an “awkward” teen
I was autistic when a psychiatrist misdiagnosed me and said I wasn’t autistic
I was autistic when I got a second opinion that confirmed I’m autistic
Self diagnosis is valid 💜
Anyone can be inquisitive, but many Autistic people are extra thirsty for knowledge and I love it. Unknown things that intrigue others for a few minutes become our hyper fixations, special interests and areas of expertise. It’s like others *want* to know things, but we *need* to know things.
Costumes to scare scientists.
Rectangular graphic with a black outline. A white rectangle inside contains black all-caps text reading, "If you are an autism researcher And you reject autistic participation or feedback You might want to rethink being an autism researcher (We said what we said)" At the bottom is a smaller long red rectangle containing white text reading, "Want more frank advice about autism? www.ThinkingAutismGuide.com" On the right in the red rectangle is the Thinking Person's Guide to Autism logo.
If you are an autism researcher
And you reject autistic participation or feedback
You might want to rethink being an autism researcher
(We said what we said)
Inspired by the fantastic CARES Conference.
Thank you, great to hear about initiatives happening in other countries. I’m pinging @autisticdoctor.bsky.social and @autisticdoc.bsky.social
@autisticdoctor.bsky.social and I were at the Breast Cancer Now event in Westminster yesterday to talk to politicians about our Autistic Experiences of Breast Cancer research project and barriers to healthcare for autistic people. sites.exeter.ac.uk/aebcstudy/
Screenshot showing the title, authors, journal information, and abstract
🗞️NEW PAPER🗞️
Barriers to healthcare & a ‘triple empathy problem’ may lead to adverse outcomes for autistic adults
“It was life threatening and nearly killed me because I was too ill & too disabled to access doctors”
Read free: journals.sagepub.com/doi/10.1177/...
@autisticdoctor.bsky.social
Congratulations Mary, fantastic news 🎉