Newcastle University

This study will increase our knowledge about what life is like for adults on the autism spectrum and relatives/carers - we will use the results to let people know how adults and relatives might want to be supported, and hope this will lead to people making changes in the services available to adults on the autism spectrum and their relatives.

By taking part, you will help us with research that might lead to improvements in services, and support for people from the autism community. The research team includes adults on the autism spectrum, their relatives and professionals. When we designed this study, we spoke to adults on the spectrum and relatives to make sure we are collecting the information needed to better understand peoples’ everyday lives.

• To collect information from relatives of adults on the autism spectrum. This will help researchers, policy makers and those providing services for adults to better understand better the skills and support needs of adults on the autism spectrum

 

• To ask for updates from time to time to understand in more detail how life experiences change for relatives/carers of adults on the autism spectrum

 

• To consult with relatives about their priority research questions to be addressed by research

 

• To help researchers recruit participants for projects that aim to answer important questions which may lead to significant advances in knowledge, opportunities and care.

 This study is for any close relative of an adult aged 16 or over, with a diagnosis of

• Autism

 

• Autism Spectrum Disorder

 

• Autism Spectrum Condition

 

• Asperger's Syndrome

 

• High Functioning Autism

 

• Atypical Autism

 

• Pervasive Development Disorder (PDD) or Pervasive Development Disorder - Not Otherwise Specified (PDD-NOS)

 

• People who think they are on the autism spectrum  but have not had a formal assessment

 

Relatives/carers of adults on the autism spectrum can have found out about this research in different ways. You may have looked at this website. Alternatively, health, education, and social care professionals and people from voluntary organisations/community groups have agreed to let relatives of adults on the autism spectrum know about this research study.

 

In the future, researchers might want to contact relatives of adults on the autism spectrum about other types of research. Our  Research Steering Committee, which includes relatives of adults on the autism spectrum, will decide which projects to support, to ensure the studies are of high quality and useful. We will contact you with information about the studies – we won’t give other people your details.  If you are interested in these studies, you can reply directly to the researchers.

 

Please note you can take part in the cohort part of the research without being contacted by us about other projects in the future.

There are two ways you can join this research study.

 

If you prefer to join online:  Please click on ‘Register with the Adult Autism Spectrum Cohort - UK’. You will be asked to give a small amount of information about yourself and your relative’s diagnosis. You will then be emailed your unique password. Once you have entered your email address and the password, you will be able to read information about the study, give your consent and fill in the online questionnaires. We know people take different amounts of time to complete forms – we have designed the forms so you can start them and if you wish, save your information and return later to complete them. This information will help us find out about the experiences of relatives of adults on the autism spectrum as well as some information about their relative’s life experience (including any sources of support, employment opportunities, types of accommodation, and other aspects of everyday activities).

 

Alternatively, if you would like paper version of the consent form and questionnaires to post back please contact us.

 

If you have questions for us or concerns about the research,  you can contact us and will be happy to discuss the project with you.

No. It is up to you to decide whether or not to join the study. The services you, or your relative, may access now or in the future will not be affected in any way by your decision.

 

What happens if I decide not to take part?

If you do not want to be contacted again by us, please let us know by contacting the address at the end of this document. To find out whether the relatives who take part in this research study are representative of all relatives of adults on the autism spectrum across the UK, it helps us to have some information about people who don’t take part.

 

 

For people who don’t take part, we would like to keep a small amount of information which you, a professional, or someone who has discussed this research with you, could provide. The information will include your year of birth, gender, ethnicity, postcode, and your relative with an autism spectrum condition’s diagnosis. We ask for your postcode so we can know what type of area in the UK you live in. Once we have recorded this information, the last 3 digits of the postcode will be removed by us, so all the information provided is anonymous. If you do not wish to be contacted by us, but are happy to provide us with this information, please complete the reverse side of the contact form and return it to us in the stamped addressed envelope. You do not have to do this, but it helps a lot – thank you.

You will also be asked to complete some questionnaires to give us information about your education, employment, relationship status, health and quality of life. You will also be asked for information on your relative’s diagnosis and some information about their autism spectrum diagnosis, health, living arrangements, level of support needed, access to support, employment, social relationships and lifestyle choices. We would like you to complete as much of the questionnaires as possible – but you can leave questions blank if you prefer. You will not have to give your relative’s name or contact details.

Your information will be kept safe according to the Data Protection Act 1998. Your personal information will be kept separate from the anonymous research data. The research team will store your personal information on a secure database at Newcastle University. The database will only be accessed by research staff working on the study and individuals from the relevant agencies or the Northumberland Tyne and Wear NHS Foundation Trust, to check the quality of the research. No identifying information will ever be released to researchers or anyone else. Any information that is published will always be anonymised.

If at any stage you wish to withdraw from this research study, we will remove all identifiable information. In that case, we will retain information on your year of birth, gender, diagnosis of your relative and postcode (see section ‘Do I have to take part?).

We will contact you from time to time to ask you to update information about your life, and that of your relative on the autism spectrum, and to complete other questionnaires. We may contact you to ask if we can visit you for certain parts of the research – in this case if you do not want a visit, or would like to have someone with you, you could say so. You will be kept informed about the study’s progress, and interesting findings, through newsletters and this website.

This study is being run by the autism research team at Newcastle University, working with groups from across the UK. The team includes experienced autism researchers, and researchers who are experts in adulthood and ageing, as well as adults on the autism spectrum and their relatives. For a list of the people involved click here. The study is funded by the UK charity Autistica.  Autistica aims to fund research that will lead to improved understanding and better outcomes for people with autism across the lifespan.

 

This research has been looked at by independent committee of people, as part of the National Research Ethics Standards (NRES) procedures. This process has been designed to protect your interests and ensure all research is of a high standard.

This study has been reviewed and given a favourable ethical opinion by Wales Research Ethic Committee 5 14/WA/1066 for England, Wales and Northern Ireland and Scotland Research Ethics Committee A 14/SS/1079 for Scotland.