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Autism friendly MRI -a short survey to make MRI scans better for autistic people and their carers

NAS71805

Dear all,

my name is Christina and I am a researcher at City, University of London. Our research is trying to improve MRI scans for autistic individuals and their parents/carers.

This is a link to the 15 minute survey: cityunilondon.eu.qualtrics.com/.../SV_4Z1n15UjKtOZwsl

(you might need to copy and paste in a  new browser)

a.What my research is about?

Magnetic Resonance Imaging (MRI) scans are useful to establish a diagnosis of simple clinical concerns, such as a persistent headache or low back pain or after an injury or accident. MRI is often used for autism research.

However MRI scans can be overwhelming for autistic people. Too much noise, narrow space, too many instructions to stay still. scans can take a long time to complete.

We need your voice to be heard so we can optimise this environment and change practice. We need to understand WHAT MATTERS FOR YOU

b.Credentials of our research

Our has full ethics approval by City, University of London (ETH2021-0950), it is funded by the Society and College of Radiographers and it is endorsed by the National Autistic Society.

 

c. Who can participate?

If you live in the UK AND

if you are an autistic young person (16-17 years of age), OR an autistic adult OR the parent/carer of an autistic child,

AND you (or your child) have had the experience of an MRI scan

d. What am i expected to do?

This is a link to the 15 minute survey: cityunilondon.eu.qualtrics.com/.../SV_4Z1n15UjKtOZwsl

(you might need to copy and paste in a  new browser)


Many thanks for everyone's help in advance

The more responses we can get, the stronger the evidence to change MRI environments and practice.

Parents

  • just so u know --- i was offered an MRI ( 2 months ago ) to look into my autistic related tinnitus ,,,,, I was concerned to the closeness and smallness of the machine but it was when someone told me that they where in it for 3 hours in their MRI scan that  I withdrew  from the investigation of my tinnitus.

    I am assuming in cant take part in your survey because I havent had  an MRI

  • in reply to aidie

    Thanks very much for engaging with the discussion and the project.

    As a sign of respect to this online autistic community I am reluctant to reply further until I get the "Ok" from the group's admin @plastic that my post does not breach any guidelines of the NAS online community. I will wait to hear back from them and then I will reply to your kind enquiry.

    Our only aim it to help and not create problems. Thanks very much for hosting us.

  • in reply to NAS71805

    you could add a new question in " have u refused an MRI ? "

Reply Children
  • in reply to NAS71805

    its ok. i decided to continue living with my tinnitus. its no biggee, compared to say getting Covid etc.

    good luck in your research

  • in reply to aidie

    Hi aidie, this is a great idea and could certainly form part of a wider project. We are applying for more funding and your comment is very useful, thank you for taking the time to reflect on this study and share your thoughts with us. However we cannot make any changes to this project as it is now fully approved by ethics in the University.

    You cannot take part in our survey if you have not had the experience of an MRI scan. I am really sorry you could not undertake your MRI for your tinnitus. Have you used another type of medical imaging examination to get the information you needed?

    many thanks

    Christina