Ageing with autism: experiences of relationships of older individuals with autism spectrum disorder – a participatory research study

This new research study is being run by the Tavistock’s Lifespan Development Service and a doctorate student from the University of Essex. It is being offered to anyone who is over the age of 55 and has a diagnosis of an autism spectrum disorder.

The study has received ethical approval from the Health Research Authority and the University of Essex. It will investigate the experiences of people with ASD as they grow older.

What is the study about?

This study is a piece of research to explore the views of individuals with an Autism Spectrum Disorder as they grow older with a particular focus on interpersonal relationships. There are lots of studies about the experiences of children and young people with autism but few studies have looked at how people aged 55 and above view things. This study will carry out individual interviews to understand relationships older people with ASD have with others. It was designed by the researcher together with a group of individuals who also have an autism condition.

During the study, the researcher will ask you questions about your experiences of ASD, any challenges you may face as you get older and how your relationships with others may have changed as you have aged.

The study is part of the researcher’s doctorate programme in clinical psychology, so it is a requirement for completion of a professional university degree.

Can I take part?

This study is interested in older adults with ASD. Any person with a diagnosis of high functioning autism or Asperger’s Syndrome over the age of 55 is able to take part. There is no upper age limit. 

Do I have to take part?

No, taking part is entirely voluntary. You will be given information about the study and will have the opportunity to ask questions before you decide. I will give you time to think about whether you would like to take part. If you like, you can also discuss this with friends or family or a professional involved in your care.

If you decide to take part, you are also free to withdraw from the study at any time and you don’t have to give a reason. If you withdraw, any data you have given will be destroyed and your name removed from study lists.

What will happen to me if I take part?

If you agree to take part and have sent the consent form:

  • you will be contacted by the researcher to answer any questions
  • we will arrange an appointment for the interview – this can be done on a date and time that suits you
  • the interview will be held at a location agreed together and will last about 1-2 hours
  • the interview will be audio recorded
  • after the interview you can ask any questions you may have
  • if you are interested in the results you can be sent a summary of these once the study is completed

Where will the interviews be held?

The interview can be held at a location which is convenient and comfortable for you. This could be at your home, at the Tavistock Clinic or another local service. The researcher will arrange the best location with you before the interview.

What will happen to the information from the interviews?

All information collected will be held in concordance with the Data Protection Act 1998. The interviews will be audio recorded and transcribed. All information will be strictly confidential and held securely on a password protected computer. Only members of the research team can access your personal data such as your name. However, other individuals will have access to the anonymised interview data but they will not be able to see data that personally identifies you.

In the interview transcripts any identifiable information from the interviews will be disguised so that your identity remains protected. Although every effort will be made to anonymise the data, anonymity cannot be guaranteed completely. Direct quotes from the interviews will be published and whilst we aim to make them unrecognisable, it is possible that such personal quotes could be identified, for example by someone who knows you.

Although the information provided during the interviews will be confidential, there are exceptions when confidentiality may have to be broken. For example, if you told me something that raised concerns about your own or someone else’s safety or wellbeing, I would have to speak to someone, such as a mental health professional, about this. These situations are rare and only occur when there is a serious risk to someone’s wellbeing or safety.

What will happen to the information once the study is completed?

The audio recordings will be held in a secure locked cabinet and will be destroyed once the study is completed. The interview transcripts will be kept securely for 10 years. The anonymised interview transcripts might potentially be shared with other researchers, or be used as part of future studies.

What about expenses?

Any reasonable travel expenses will be reimbursed. I will also be able to come to a location near to you, so that you won’t have to travel too far.

As a thank you for participating you will also be offered a £15 gift voucher.

What are the possible disadvantages of taking part?

The time it takes (1-2 hours for the interview, plus possible travel)

Some people may find talking about their condition upsetting (support will be offered if this is the case)

What are the possible benefits of taking part?

Being part of new research which can help broaden understanding of ASD

Being able to tell your story and have your voice heard

What will happen to the results of the study?

The results of the study will be written up into a research report which will form part of the researcher’s doctoral thesis. The aim is also to submit the results for publication in a professional journal. If you decide to take part, you will be offered a copy of the report, or a summary of this, once the study is complete.

Who is sponsoring the research?

The study is sponsored by the University of Essex.

Next steps

If you wish to participate in the study, please discuss this with Dr Sarah Helps.

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Help us with this project

We are currently looking for volunteers to be interviewed.

Contact ajmalz@essex.ac.uk for more information