Research Participation - Autistic Empire

Is this page out of date? We need someone to maintain this page! Read more at our jobs board.

For Researchers

We are happy to support requests for autistic adult participants in research, subject to the following conditions:

1. The research is not being conducted by individuals or groups which are looking for a “cure” for autism, associated with Applied Behavioural Analysis, or genetic research or gene therapy.

2. You will provide us with a copy of the completed research to be stored in our Vault for the use of our Citizens.

We will post a short summary of your intended study or project here and post any other information, such as documents or posters, in a post on our Forum. We will then send out one post to promote the project on our social media platforms. If we’re particularly enthusiastic about your project, you are yourself a Citizen, or you can make a financial contribution to the Empire, we may do more.

If these are acceptable terms, please email team@autisticempire.com with the following information:

* A short summary of your project, purpose, desired demographics of participants, terms of participation, compensation and proposed timeline (when the project/interviews/survey period will run and when you expect roughly to have the results written up by – we are autistic and we like to know these things).

* A deadline by which this advert can come down.

* An Instagrammable image, if you have one, that we can send out on our social media platforms.

* Any information sheets, ethics forms, posters or documentation that you want to go on the Forum.

Please note that we do run our own shoestring research projects and are always happy to hear from researchers who would be interested in amplifying, funding, partnering, or building on our work.

For Autistic People

PAID – Fun study for autistic preschoolers and school-going children run at King’s College London

My name is Julia Koziel and I am a researcher at King’s College London. Our team is currently looking for parents of pre-schoolers and school-age children with autism who would like to take part in our short study run remotely. We hope that our newly developed tablet tasks will inform clinicians or teachers about any additional support required by children. I am e-mailing to ask if you could provide your support by circulating the attached leaflets with members of Autistic Empire or sharing these materials on your social media? Any help would be much appreciated.

The study aims to develop touch-screen cognitive games that reliably measure cognitive, social, and emotional development in children with autism, as well as with other neurodevelopmental disorders. We have developed two applications, one for children between the ages of 2,5 and 6 and one for children between the ages of 6 and 11.

The study involves the child playing some tablet games for approximately 45 minutes – 1 hour. The parent is then asked to fill in a few questionnaires about the child’s behaviour. We offer participants a £ 15 e-voucher for their participation.

You can also refer interested participants to our webpage: oneofakindcharity.com. If you have any questions, please email the research team at pip-tabletstudy@kcl.ac.uk and we will answer any queries you may have.

Poster (PDF)

Exploring the Policy Priorities of Autism Communities across Europe

The Autism Research Centre is exploring the top priorities for policy change from autism communities across Europe. The aim is to create a document to present to policy makers in the EU of the top 10 points for change.

We want to hear from YOU if:

– You are autistic and over 16 years old
– You are a parent or carer of an autistic who is unable to complete the survey themselves
– You are a member of an organisation working with autistic people

Please kindly share this survey with your mailing lists or on any social media such as your twitter or Facebook feeds.

If you have any questions, please contact the research team on autismpolicyresearch@medschl.cam.ac.uk

The following link will take you to the survey: https://rebrand.ly/10-points-for-change The survey is now also available in French, Spanish and German (click on the box in the top right to choose the language).

EXPERIENCES OF AUTISTIC PEOPLE ACCESSING SERVICES

The ARC is exploring autistic people and their family carers’ access and experiences of a range of services across Europe and beyond. The project is called ACCESS-EU.

To make the research as meaningful as we can, we need as many participants as possible.

We would also appreciate it if you could share this advert with your mailing list(s)/local networks or on social media channels such as Facebook pages or Twitter feeds.

We are hoping to hear from those:

– who are autistic and over 16 years old or a parent/family carer of an autistic person of any age who is unable to complete the survey themselves

AND

– who has (or their autistic family member has) accessed (successfully and unsuccessfully) a service

The survey is open to individuals (or carers with a family member) with a formal diagnosis of autism, those who are self diagnosed and/or waiting for an autism diagnostic service.

The survey takes 10-20 minutes to complete.

You can read more about the study and take part via https://cambridge.eu.qualtrics.com/jfe/form/SV_8p1GcMpaSLjo0fP

We also have translated versions of the survey:

CZECH: https://rebrand.ly/ACCESS-EU-CZECH

FRENCH: https://rebrand.ly/ACCESS-EU-FRENCH

GERMAN: https://rebrand.ly/ACCESS-EU-GERMAN

ITALIAN: https://rebrand.ly/ACCESS-EU-ITALIAN

POLISH: https://rebrand.ly/ACCESS-EU-POLISH

SLOVENE: https://rebrand.ly/ACCESS-EU-SLOVENE

SPANISH: https://rebrand.ly/ACCESS-EU-SPANISH

If you have any questions, please contact Dr. Joyce Man or the study team on autismpolicyresearch@medschl.cam.ac.uk

HEALTHCARE EXPERIENCES STUDY

The Autism Research Centre is looking for both autistic and non-autistic individuals, aged 16 years or older to complete an anonymous survey about healthcare experiences. With your help, we are hoping to better understand how the healthcare experiences autistic individuals may differ from others. Currently, there is very limited research on the physical health profile of adults with autism. We hope that this study will allow us to better establish a comparison of experiences regarding healthcare experiences.

To participate in this study, please complete this anonymous questionnaire: https://bit.ly/2uDj0Ks . It should take approximately 15-25 minutes of your time to complete.

For further information on the study, please consult the Participant Information Sheet at http://docs.autismresearchcentre.com/Healthcare_Experiences_Information_Sheet.pdf . In addition, feel free to contact AutismPhysicalHealth@medschl.cam.ac.uk with any further questions.

Exploring the benefits and impact of participation in improv comedy and lived experiences on anxiety

Hello,

I am a PhD student at the Tizard Centre in the University of Kent. My project is about exploring the benefits and impact for autistic people using improv comedy training on anxiety and their lives.

I would like to see if you could help share the information about my upcoming studies. In this email, I wish to mention the first one.

This study aims to explore anxiety and lived experiences between autistic and non-autistic people with improv comedy training and/or involvement. Participants will be asked about:

• their life experiences before and after participating in improv comedy;

• what makes an improviser easy to improvise with;

• fitting into the world;

• and their thoughts about the benefits of improv (if any).

This does mean improv theatre and comedy, and not theatre that may use some improvisation. I hope this will help as a distinction in who I am seeking. I have attached a full information sheet and consent form as a pdf.

Many thanks,

Nathan Keates BA (Hons) PGCE MA | PhD Researcher | Tizard Centre, University of Kent, Cornwallis East, Canterbury, Kent CT2 7NF

Publications: JADD article

Interview study Aut and non Info-Consent form