School of Psychology Information Sheet

Title of Project: Experiences of people from the UK seeking an assessment for autism and/or ADHD from 2014 onwards

Ethics Approval Number: F1730

Researchers: Dr Sarah Cassidy, Dr Victoria Newell, Dr Rachel Moseley, Dr Kirstin Holsey, & Dr Tracey Parsons

Contact Details: lp-mhautism@nottingham.ac.uk; School of Psychology, University Park, Nottingham, NG7 2RD

We are a neurodiverse team of researchers including autistic and non-autistic people, working in partnership with the charity Autism Action, and their community network. We invite you to take part in an online survey to gather vital data on the lived experiences, barriers, and support needs of people seeking an autism and/or ADHD assessment in the UK from 2014. We will use this information to help inform the government’s upcoming autism strategy and policy decisions regarding ADHD. 

Before you decide if you wish to take part, it is important for you to understand what the research will involve. Please read the following information carefully. You can also download a longer copy of this information sheet here.

You can take part if you are 18 years or older and living in the UK. You can complete the survey about yourself, and/or on behalf of someone else. We are looking for people currently at any point in the assessment journey, you do not need to have completed your assessment to take part.

If you take part, you will be asked questions about your assessment journey, or that of the person you support. We will ask about difficulties you (or they) faced before seeking an assessment and during the wait. We will also ask about what support you hoped for, what support you actually got, and the outcome if the assessment has happened. We will also ask some optional questions about you (e.g., age, sex, gender identity, ethnicity), and if relevant, the person you support. 

We estimate that completing the survey once will take most people up to 60 minutes. You can take breaks if you need to. You can stop and come back to the survey later, using the same link and device that originally brought you here.

Participation in this study is totally voluntary and you are under no obligation to take part. You are free to withdraw at any point before or during the study. All data collected will be kept confidential and used solely for research and policy-influencing purposes, in compliance with the General Data Protection Regulation and Data Protection Act (2018). To help us keep your identity safe, please do not use the real names of your doctors, specific clinics, or your town when typing your answers.

We will also collect your IP address and a broad estimation of your location (which is typically as precise as identifying your city, but NOT your exact location). This will help us identify fraudulent responses (e.g., from bots) and allow you to return to the survey from the same device. After we check the data for fraudulent or duplicate response, we will permanently delete your IP address and location.

Details such as how to contact the University’s Data Protection Officer and your rights as a data subject can be found at https://www.nottingham.ac.uk/utilities/privacy/privacy.aspx. Further details on how your information is processed and how to find out when it will be disposed of can be found in the privacy information here.

As an online participant in this research, we are obliged to make you aware that there is always a potential risk of intrusion by outside agents, for example, through hacking, and therefore the possibility of being identified. The research team cannot prevent or control this.

If you would like updates on this project, such as results, next steps and any Government response, you can opt to sign up via Autism Action, here. This link will take you to a separate website, and your details will be kept completely separate to any research data you provide. There will also be opportunity to sign up for updates via Autism Action at the end of the survey if you wish to via this same link.

If you have any questions about this project, or how your data will be used, please contact the research team at lp-mhautism@nottingham.ac.uk. If you remain unhappy and wish to complain formally, you can do this by contacting Prof. Stephen Jackson (Chair of Ethics Committee) at stephen.jackson@nottingham.ac.uk

https://autismaction.qualtrics.com/jfe/form/SV_02LZFaHojyfSxP8