In September 2021, Spectrum 10K paused their study after feedback from autistic people and their parents and carers about the use of data collection, and consent and the use of data collected in future studies.
The study was going to look at “the genetic and environmental factors that contribute to autism and related physical and mental health conditions to better understand wellbeing in autistic people and their families.”
You can read their official statement regarding pausing the study by clicking here
The Norfolk Autism Partnership Board has been contacted by Spectrum 10K who have now launched a consultation
What is the purpose of the consultation?
The purpose of the consultation is to improve Spectrum 10K, address concerns, and make changes to the study based mainly on what autistic people say. Changes will also be based on the opinions of others with an interest in improving the study including family members, and those who work with or for autistic people.
How to respond to the consultation
The consultation will run from March to May 2023.
The consultation includes four things:
- A survey is available here – this is the main way to respond to the consultation and should be where people start their involvement. It will remain open for responses until the end of May.
- Webinars during March and April to ask questions and hear answers from Spectrum 10K.
- Drop-in discussion sessions during April and May facilitated by Hopkins Van Mil and Leneh Buckle.
- Opportunities for those who cannot access the survey in its full or Easy Read version to speak to or have a text conversation with HVM or Leneh Buckle.