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Autism friendly MRI: how to make MRI scans better and more inclusive for autistic people and their parents/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: https://cityunilondon.eu.qualtrics.com/jfe/form/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: https://cityunilondon.eu.qualtrics.com/jfe/form/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
  • in reply to Plastic

    Sorry this is not a spam, this is a NAS endorsed research study.

  • in reply to NAS71805
    Plastic said:
    Is it legal for you to ask vulnerable minors for their information?

    If you can legally sign up to Facebook at the age of 13 I’m guessing yes.

  • in reply to Plastic

    This study has undergone a very thorough ethics approval, at 3 stages. One for autistic adults, one for autistic young people (with a box to confirm that they have their parents' agreement under consent) and one for younger than 16 years of age, in which case their parents/carers would need to fill in the questionnaire. This survey, like every research is voluntary. In particular this one is anonymous. we do not propose any intervention, we just need the voices of the autistic community to be heard to change a practice that seems suboptimal and  in many cases exclusive. thanks for those of you who would consider to participate to help make MRIS more autism friendly in the UK. happy to answer any queries you might have.

  • in reply to Plastic

    This is not a scam and as said I can provide the letter from NAS that endorses this study, I have not seen anything about the process to post.I am not sure if i you are happy to be emailed the endorsement letter so you can ascertain that this is indeed a NAS endorsed study. We used a NAS consultant to look at the survey and help us make it easier and hopefully not overwhelming for autistic people. we discussed it with the head of research at NAS, Dr Ian Dale. We have had many different autistic users help us design it. My mistake if i failed to notice a requirement to post here. I tried to find an admin but I was unable to. I understand you must be the admin fo this group. I only posted on the group swhere this study was relevant: adults, carers and healthcare and not to other community groups. Definitely not a spam but an effort to make MRIs more accessible for autistic people.

  • in reply to Peter

    In the UK?    Legal?     Don't think so.....

Reply Children
  • in reply to Plastic

    This study has undergone a very thorough ethics approval, at 3 stages. One for autistic adults, one for autistic young people (with a box to confirm that they have their parents' agreement under consent) and one for younger than 16 years of age, in which case their parents/carers would need to fill in the questionnaire. This survey, like every research is voluntary. In particular this one is anonymous. we do not propose any intervention, we just need the voices of the autistic community to be heard to change a practice that seems suboptimal and  in many cases exclusive. thanks for those of you who would consider to participate to help make MRIS more autism friendly in the UK. happy to answer any queries you might have.

  • in reply to Plastic

    This is not a scam and as said I can provide the letter from NAS that endorses this study, I have not seen anything about the process to post.I am not sure if i you are happy to be emailed the endorsement letter so you can ascertain that this is indeed a NAS endorsed study. We used a NAS consultant to look at the survey and help us make it easier and hopefully not overwhelming for autistic people. we discussed it with the head of research at NAS, Dr Ian Dale. We have had many different autistic users help us design it. My mistake if i failed to notice a requirement to post here. I tried to find an admin but I was unable to. I understand you must be the admin fo this group. I only posted on the group swhere this study was relevant: adults, carers and healthcare and not to other community groups. Definitely not a spam but an effort to make MRIs more accessible for autistic people.