Self-Advocacy Guide | Autism Canada
Thanks Ann. We will be producing guidelines as the outcome of the project which I appreciate wonβt 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 /
24.09.2025 16:27 β π 1 π 0 π¬ 1 π 0
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 donβt know how my body will react. #AutisticHealthcare
#cansky
12.02.2025 18:45 β π 14 π 0 π¬ 0 π 0
Ainβt that the truth!
01.12.2024 09:27 β π 1 π 0 π¬ 0 π 0
Thank you, just reached 5 years since diagnosis. Waiting for annual mammogram. Always a stressful time.
01.12.2024 09:19 β π 1 π 0 π¬ 1 π 0
Thank you so much. I have liked the Cancer feed.
01.12.2024 09:13 β π 1 π 0 π¬ 1 π 0
Hi, is it too late to be added. Iβm an autistic researcher exploring ways to improve cancer care for autistic people. Also had a breast cancer diagnosis myself.
01.12.2024 08:58 β π 2 π 0 π¬ 2 π 0
Hello, can you send me an email at aebcstudy@exeter.ac.uk and we can chat there. Is that ok?
26.11.2024 23:45 β π 1 π 0 π¬ 1 π 0
Hi, no problem at all. There needs more research about autistic and otherwise neurodivergent experiences of cancer. I would love to connect, thank you.
25.11.2024 07:23 β π 0 π 0 π¬ 0 π 0
Yup, Iβm here. I need to post more though. Thanks for mentioning me.
24.11.2024 17:50 β π 3 π 0 π¬ 1 π 0
Hi, happy to chat about the project.
24.11.2024 16:56 β π 1 π 0 π¬ 1 π 0
#oncosky
16.11.2024 19:21 β π 0 π 0 π¬ 0 π 0
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
15.11.2024 18:24 β π 6 π 2 π¬ 1 π 0
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
24.09.2024 14:43 β π 3 π 5 π¬ 0 π 0
AutisticMenopause.com
Bridging the Silos Publishes Research in Autism Journal Bridging the Silos has published a peer reviewed journal article on findings from their first phase of research. The article is free and Open Ac...
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
04.05.2024 18:06 β π 16 π 7 π¬ 0 π 3
I was autistic when I was a kid and everyone called me βquirkyβ
I was autistic when I was an βawkwardβ teen
I was autistic when a psychiatrist misdiagnosed me and said I wasnβt autistic
I was autistic when I got a second opinion that confirmed Iβm autistic
Self diagnosis is valid π
15.12.2023 16:55 β π 28 π 5 π¬ 2 π 0
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. Itβs like others *want* to know things, but we *need* to know things.
02.11.2023 20:18 β π 68 π 11 π¬ 4 π 0
Costumes to scare scientists.
25.10.2023 14:13 β π 189 π 74 π¬ 3 π 6
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.
21.10.2023 18:38 β π 55 π 26 π¬ 2 π 0
Thank you, great to hear about initiatives happening in other countries. Iβm pinging @autisticdoctor.bsky.social and @autisticdoc.bsky.social
19.10.2023 15:03 β π 0 π 0 π¬ 0 π 0
Home
Who? We are a team of researchers from the Psychology Department and the Social and Political Sciences, Philosophy and Anthropology Department at the University of Exeter. What? A research project tha...
@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/
19.10.2023 08:24 β π 7 π 1 π¬ 0 π 0
Screenshot showing the title, authors, journal information, and abstract
ποΈNEW PAPERποΈ
Barriers to healthcare & a βtriple empathy problemβ may lead to adverse outcomes for autistic adults
βIt was life threatening and nearly killed me because I was too ill & too disabled to access doctorsβ
Read free: journals.sagepub.com/doi/10.1177/...
@autisticdoctor.bsky.social
17.10.2023 09:06 β π 84 π 57 π¬ 3 π 9
Congratulations Mary, fantastic news π
16.10.2023 17:53 β π 1 π 0 π¬ 0 π 0
The pharmacy gave me a different brand of Tamoxifen yesterday, a brand that had given me horrible side effects, and I didnβt realise until just now. I really hope there isnβt a shortage of my usual brand.
#autistic #cansky
15.10.2023 09:38 β π 4 π 0 π¬ 0 π 0
Home
Who? We are a team of researchers from the Psychology Department and the Social and Political Sciences, Philosophy and Anthropology Department at the University of Exeter. What? A research project tha...
Hello, Iβm an Autistic Research Fellow interested in improving cancer care for autistic people. I am the lead-researcher on the Autistic Experiences of Breast Cancer project funded by Breast Cancer Now. For more details see sites.exeter.ac.uk/aebcstudy/
12.10.2023 11:29 β π 2 π 0 π¬ 0 π 0
There is the #AutRes feed about Autism Research that might be of interest.
09.10.2023 07:11 β π 3 π 0 π¬ 1 π 0
captapnetwork.wordpress.com/2023/09/19/h... Hurrah. Our lovely guide to using kind and respectful language about autistic people is out. Feel free to share.
05.10.2023 12:33 β π 62 π 46 π¬ 3 π 2
Thank you, I will definitely take a look
03.10.2023 18:10 β π 1 π 0 π¬ 0 π 0
I am really pleased to hear you have the all clear. Processing it all will take time. I hope you have support during this time, there is no rush to process it all right now. Thank you, Iβm am glad we have connected too. Sending supportive vibes to you.
03.10.2023 18:10 β π 1 π 0 π¬ 0 π 0
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