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Brighton & Sussex Medical School

Time for Autism

Time for Autism

About Time for Autism

Time for Autism is a ground-breaking education programme that aims to transform healthcare for autistic people by increasing the knowledge and understanding of medical students. 

The project is a collaboration between Brighton and Sussex Medical School, local families, Sussex Community NHS Foundation Trust, Sussex Partnership NHS Foundation Trust, local charities and voluntary groups.

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Time for Autism update in light of the COVID-19 pandemic

As a result of rapidly changing developments and government restrictions, we have decided to delay the start of the programme until September 2021. 

This is not a decision we have taken lightly. The coming months were due to involve intensive family recruitment in preparation for the planned start date in September 2020.

Following government guidance to protect everyone’s safety, visits to families cannot now go ahead and it is unlikely they will resume in time to recruit sufficient families for September. Unfortunately there is no flexibility within the medical school curriculum to start the programme mid-year, so we must delay until the start of the following academic year, in September 2021. 

Thank you for your continued support and interest in Time for Autism. We look forward to working with you in 2021, and wish you all the very best at this challenging time.

"I'm delighted to support this exciting initiative. I believe it has the potential to make such an important difference to the lives of families touched by autism."
David J Burns MBE

Watch our short video below to find out more about Time for Autism.

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Improving medical education

Autism has been identified as an area where undergraduate medical training is patchy, and on some courses there is little time devoted to it.    

Future doctors who come into contact with autistic people and their families need to be equipped with the appropriate skills, knowledge, empathy and understanding to provide good quality care, regardless of their clinical specialism. 

We are excited to have brought together the partnerships needed so that Time for Autism can develop and deliver innovative autism education. 

Our work is funded by Health Education England and underpinned by its Core Capabilities Framework for Supporting Autistic People. This was launched in November 2019 in order to support the future health and social care workforce as part of the National Autism Strategy.

How does it work? 

The Time for Autism programme will be a mandatory part of the fourth year of the medical curriculum. Students will learn about autism in the classroom from specialists in the field including parents of children with autism and autistic adults. The students will then be paired with a family who has a young person on the autism spectrum and will visit them three times over the course of a year, starting in September 2021.

During the visits students will have a unique opportunity to talk to families and listen to their experiences within and outside of healthcare settings. They will learn more about autism and the impact it has on day-to-day life by getting to know the young person and the family. In Time for Autism the young people with autism and their families will be the teachers. 

The Time for Autism model is informed by Time for Dementia, a novel educational programme in which people with dementia and their carers teach undergraduate medical and healthcare students about what it is like to live with the condition.

How to take part

We are looking for families in Brighton and Hove and across Sussex to take part in this new education programme at Brighton and Sussex Medical School designed to teach medical students about autism. 

This is an exciting opportunity for children and young people on the autism spectrum and their families to actively contribute to improving the skills, knowledge and understanding of future doctors. 

Please contact us directly if you are interested in taking part. Our Development Manager will contact you and make a time to meet with you at home. She will explain the programme in more depth, and if you are still interested, she will enrol you in the programme. You can change your mind about involvement at any time.

We will keep in touch with you about how the programme is developing, and in early September 2021, we will give you more information about the fourth year students who will be visiting you during 2021 and 2022.

Sharing your experiences and expertise with the students will help them to go on to provide better care for autistic people of all ages and their families in the future.

If you would like to get involved, please contact:
Alison Smith, Time for Autism Development Manager
Telephone:  07717 450954 / 01273 877896  
Email:  sc-tr.timeforautism@nhs.net 

Lived Experience Advisory Group

Time for Autism has an advisory group to provide advice on autism and issues affecting autistic people and their families. Members of the group bring personal and professional insight and experience of autism. The group meets regularly and continues to contribute to the development of the programme. 

Research 

It is intended that an underpinning research study will support the development and evaluation of Time for Autism, in two phases. 

Phase 1 has built the evidence to develop, deliver and establish an evaluation framework for Time for Autism. This has involved in-depth qualitative interviews with final year medical students and parents/carers of a child with autism about their perception of medical training needs.

Phase 2 will be the formal evaluation of the Time for Autism programme. This will include student outcomes, as well as qualitative evaluation and satisfaction of both students and parents/carers undertaking the programme. 

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Time for Autism terminology

There are many terms that are used to describe autism and we want to be clear about the choices we are making in the Time for Autism programme.

After careful consideration of available research and discussion with our Lived Experience Advisory Group, the following decisions have been made:

1. As some families prefer ‘person-first’ language (e.g. ‘child with autism’) and some prefer ‘identity-first’ language (e.g. ‘autistic person’) the medical students will be advised to ask families which terms they prefer to use, and to stick to these on their visits.

2. In our written communications to families, person-first language (e.g. ‘child with autism’) will be used as this was felt to be the stronger preference by our Lived Experience Advisory Group and least likely to cause offence.

3. When communicating more widely about Time for Autism, some identity-first language (e.g. ‘autistic person’) is felt to be acceptable particularly when referring to adults. This reflects research published in Autism in 2015* which showed a shift towards a preference for more positive and assertive language, particularly among autistic communities where autism is seen as integral to the person. Identity-first language has also been adopted by the recent Autism Capabilities Framework released by the Department of Health and Social Care (October 2019).

4. ‘On the autism spectrum’ will be used instead of ‘ASC’, ‘ASD’ or ‘Asperger’s Syndrome’.

5. Unless otherwise stated, ‘child or young person with autism’ refers to children and young people across the autism spectrum at all levels of intellectual ability.

*Kenny et al (2015). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, 20(4), 442-462.