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Research project: Information sharing in online groups for people on the autism spectrum (posting with permission)

Suzanne

Hi,

I'm a PhD researcher at the University of Sheffield, researching autistic people's use of online groups for finding and sharing information. I am looking for autistic people who use online forums and discussion groups, and who would be interested in talking to me about their experiences of using these groups, and about what things they find helpful or unhelpful in situations where they need to access or share information.

I would like to hear from any autistic adults (aged 18 or over) who use, or have previously used, an online group or forum for people on the autism spectrum. This includes people who have used these groups just by reading what is posted there, as well as those who actively write posts on them. Participants may be either professionally diagnosed or self-identified as autistic.  

I would be very happy to talk to people entirely by email (or by online video meeting, if preferred). Participation will be completely confidential. As a thank you for your time and effort in taking part, you will receive a £30 online shopping gift card (either Amazon or Love2Shop, whichever you prefer). 

I am researching this area as information plays a very important part in everyday life, and online groups are known to be an important source of information, as well as support, for many users. Existing knowledge of people’s information needs, and how they look for, share and access information, is based overwhelmingly on research with non-autistic people, which may not reflect autistic people’s needs and experiences. I hope that my study will help to address this gap and and gain better understanding of autistic people’s information needs and use of online groups.  The research is being carried out at the University of Sheffield and has been ethically approved.

If you are interested and would like to take part, or want to find out more about it before deciding, you can use the following link to view the study information web page, which also has a contact form and consent form to sign up:

https://sites.google.com/sheffield.ac.uk/onlineinformationsharingstudy/home

Alternatively you can contact me via this form, and I will email you an information sheet that contains full details about the study, and you will be able to ask any questions you may have about it before you agree to take part.:

https://forms.gle/dN19hSYER5gjnnTu6 

Many thanks,

Suzanne

(University of Sheffield, Information School)       

Parents

  • Hi Suzanne,

    I’m autistic myself and have studied autism independently for just over 20 years, listening to people all over the spectrum and their experiences which involved the use of forums.

    Personally, I go on forums to find parents of autistic children to share the actual truth about autism and how to help as the internet has a lot of outdated information. I’ve seen some use forums and social media as a way of communicating from a comfortable environment that’s not overwhelming. Some do so to feel safe to share their feelings and emotions as the public judges their emotional regulation ‘weird’ sometimes leading to being bullied. Some use them because they can relate more with their experiences and not feel alone.

    Autistic people use the internet to avoid so many overwhelming situations caused by living in an inherently ableist world as it was designed without disabilities in mind. A common example is some will do online shopping to avoid shopping centres full of fluorescent lights, loud noises, populated areas etc…

    I hope some of this has helped.

Reply

  • Hi Suzanne,

    I’m autistic myself and have studied autism independently for just over 20 years, listening to people all over the spectrum and their experiences which involved the use of forums.

    Personally, I go on forums to find parents of autistic children to share the actual truth about autism and how to help as the internet has a lot of outdated information. I’ve seen some use forums and social media as a way of communicating from a comfortable environment that’s not overwhelming. Some do so to feel safe to share their feelings and emotions as the public judges their emotional regulation ‘weird’ sometimes leading to being bullied. Some use them because they can relate more with their experiences and not feel alone.

    Autistic people use the internet to avoid so many overwhelming situations caused by living in an inherently ableist world as it was designed without disabilities in mind. A common example is some will do online shopping to avoid shopping centres full of fluorescent lights, loud noises, populated areas etc…

    I hope some of this has helped.

Children