Looking for Participants: The impact of peer learning, autism content and AI on supportive communities, autistic wellbeing and identity

[KMAU_2023]

*Posted with Permission from Moderators*

Introduction

Hi, my name is Kira and I'm a postgraduate autistic researcher from the University of Strathclyde looking for participants to take part in my online survey which asks participants about their experiences with peer learning, autism-related content and AI and its impact on fostering supportive environments, their autistic wellbeing and identity.

About the research
After receiving an autism diagnosis - no matter how long ago - it can take some time for someone to fully understand what that means for them and to know what does and doesn't help their wellbeing, how to navigate the world and find their community. This study wants to look at how someone's surroundings, identity and wellbeing may be impacted by peer learning (learning from other autistic people); autism-related content (whether digital or non-digital); and AI technology.

The survey features a mixture of multiple choice and text-based answers to write about your experience. If you need some help answering the questions, I have provided a “Question Guide” to give some further explanation of questions, and how certain questions could be answered.

Attachments of the participant information sheet, privacy notice, consent form, question guide and advertisement have been uploaded along with the post.

Participant information:
The survey is open to anyone meeting the following criteria:

- at least 18 years old
- living in the United Kingdom
- have a formal autism diagnosis

Note: The study acknowledges that diagnostic terms have changed over time, so anyone with a diagnosis of ASD/ASC, Autism, Asperger's Syndrome, PPD-NOS and childhood disintegrative disorder is welcome to take part.

Participation is entirely voluntary, and you are free to skip questions you don't want to answer.

Survey link:
If you're interested in taking part or want to find out more, all the details can be found via the survey link here: Peer-Learning, autism content and AI on autistic communities, wellbeing and identity

Please note: The survey is open until the 29th November 2024, 11:59PM.

Contact details:
For any further questions, I can be contacted at [email protected]. The chief investigator, Leanne McNeill, can be contacted at [email protected].

Ethical Approval:
Ethical approval has been granted by Strathclyde Institute of Education (HASS) ethics committee and is supervised by Leanne McNeill ([email protected]).


For anyone that does wish to take part, or wants to share the study to others, it's greatly appreciated.

 

[FilterFreq]

I've seen a lot of these here lately. I wonder how many people actually qualify

 

[Raggamuffin]

Well, I imagine it discludes more than half of the Autistic population who probably don't have a diagnosis. Then there's the minimum age requirement, and limiting it to being UK only.

Given that where I live the waiting list is over 4 years for an assessment. Plus they lost my original referral letter during COVID, which took a year of waiting to be revealed. A private assessment is over £1500. I paid over £1000 for my ADHD assessment, and NHS Dr's refused to prescribe medication. I had to go through private which cost hundreds of pounds. That along with side effects had me give up on meds.

Still, with enough reading and research - you can make a pretty informed opinion regarding self-diagnosis. But with it not being made by a medical professional, you won't fit societies criteria, or a workplaces, or the medical profession. Even friends and family might doubt why you would self-diagnose. I got full marks on my ADHD assessment - textbook case of the disorder, and yet my family outright denied I have the condition.

At the end of the day, living with neurodiversity can be very lonely at times. And the revelation of having it can be mired with criticism and confusion.

Ed

 

[KMAU_2023]

I've seen a lot of these here lately. I wonder how many people actually qualify

Thanks for your comment - I'm aware that, especially within a forum with people around the world, the criteria seems quite strict and not everyone can take part. While it would have been great to open the survey to a wider group, I ultimately decided on this criteria to ensure a focused consistency which aligns with my research aims and analysis.

 

[KMAU_2023]

Well, I imagine it discludes more than half of the Autistic population who probably don't have a diagnosis. Then there's the minimum age requirement, and limiting it to being UK only.

Given that where I live the waiting list is over 4 years for an assessment. Plus they lost my original referral letter during COVID, which took a year of waiting to be revealed. A private assessment is over £1500. I paid over £1000 for my ADHD assessment, and NHS Dr's refused to prescribe medication. I had to go through private which cost hundreds of pounds. That along with side effects had me give up on meds.

Still, with enough reading and research - you can make a pretty informed opinion regarding self-diagnosis. But with it not being made by a medical professional, you won't fit societies criteria, or a workplaces, or the medical profession. Even friends and family might doubt why you would self-diagnose. I got full marks on my ADHD assessment - textbook case of the disorder, and yet my family outright denied I have the condition.

At the end of the day, living with neurodiversity can be very lonely at times. And the revelation of having it can be mired with criticism and confusion.

View attachment 137474

Ed

 

[KMAU_2023]

I appreciate the feedback and completely understand that getting a diagnosis can be difficult and expensive for so many - it's not fair on people to have to wait for so long and experience a lack of support if they receive a private diagnosis. I'm also sorry to hear you've had such a difficult experience with the assessment process and with being invalidated by others - it's terrible that you've had to experience that, and I do hope things improve for you and you find people more supportive of your diagnoses.

I considered the participation criteria carefully and, in order to maintain a focused scope of my dissertation aligned with my research aims, I made the decision to focus on formally diagnosed adults within the UK. That said, the decision was not made with the intention to dismiss self-diagnosis, which is so important for many autistic people.

In the future I think it would be great to look at the experiences of formal and self-diagnosis together, and include perspectives from across the world.