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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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"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. Our full playlist is on YouTube here >

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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.

Watch the video below to hear from people with autism and their experiences. This video was recorded for students taking part in the new Time for Autism programme at Brighton and Sussex Medical School.

How does it work? 

The Time for Autism programme is a mandatory part of the fourth year of the medical curriculum. Students learn about autism (view our terminology here) in the classroom from specialists in the field including autistic adults and parents/carers of autistic children.

The students are then paired with a family who has a young person on the autism spectrum. The students visit their family at home three times over the course of the year.

During the visits students have a unique opportunity to talk to families and listen to their experiences within and outside of healthcare settings. They 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 and their families are 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 the Time for Autism 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, Alison Smith, will contact you and make a time to meet with you via a video call. 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.

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  
Email: timeforautism@bsms.ac.uk

Lived Experience Advisory Group

Time for Autism has established an advisory group to provide the programme with advice on autism and issues affecting autistic people and their families. Members of the group are autistic and/or have autistic children. The group meets regularly and continues to contribute to the development of the programme.

For women stood next to each other outside a building smiling.

Research  

An underpinning research study is supporting 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 autistic children about their perception of medical training needs.

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

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Feedback

From students

“I really enjoyed getting to know my TFA family. They were very welcoming and open about their experiences, and it was great to get to know the child with autism through playing and drawing with her. All in all a great experience!”

“I really enjoyed meeting my family and meeting them in-person definitely made the experience better.”

“The family were lovely. We got to see how autism can present differently even in siblings and had great discussions.”

“(To be) given the independence to ask questions and organise what we wanted to discuss each visit and also understand what the families go through after the diagnosis as doctors often do not get to see this side of things.”

“The TfA team are amazing and the programme is crucial.”

From families

“I just wanted to give you a bit of feedback on your wonderful medical students. We had our first visit today and we were so impressed with how professional yet down to earth and lovely they both were. They were genuinely interested, asked excellent questions, really listened and also were very open with us as well about their personal experiences with special needs which I thought was wonderful. Their “bedside manner” is perfect and We’d love to have them as our doctors one day. Also they were telling us how supportive and inclusive the medical school is and I was so impressed with what I heard so just wanted to say a huge well done. As I parent of a special needs child I feel really happy to hear that so thank you and makes me so pleased we’re taking part in this trail blazing project.”

The students were utterly delightful and my boys loved meeting them. Both of my boys took time to warm up but then really played with them. No questions or concerns, just so thrilled this is part of their course.”

“The medical students were lovely thank you, very interested and considerate, we were very impressed. Our daughter is looking forward to their next visit!”

“The first visit with the girls was really good. They were both really lovely and I could tell they were really interested in us as a family and how Autism and our family work together. I'm looking forward to our next visit.”

“Oh it was lovely. Both of my students were engaged, open, respectful, and curious.”

“The visit went very well. I think the students were quite shocked by some of our experiences (although shocking for them, it was quite cathartic for me!). I felt they came very prepared, and they asked a lot of very good, very informed questions. I think they will be very good doctors!”

A selection of colourful felt tip drawings from the Time for Autism gallery

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. Respecting personal preferences about terminology is an important guiding principle (1). As some of our Time for Autism 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 communication about the Time for Autism programme we will endeavour to respect the diversity of opinions about terminology. Identity-first language (e.g. ‘autistic person’) is widely preferred by the adult autism community. (1,2). Identity-first language has also been adopted by the recent Autism Capabilities Framework released by the Department of Health and Social Care (October 2019). We will also use the terms ‘on the autism spectrum’ and ‘with an autism diagnosis’ to describe the children and young people taking part in the programme.

1 Keating et al (2022). Autism-related language preferences of English-speaking individuals across the globe: A mixed methods investigation. Autism Research, 16(2), 406-428.

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

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Oliver McGowan Mandatory Training Medical Schools Project 

Health Education England (HEE) have funded Brighton and Sussex Medical School to identify how the Oliver McGowan Mandatory Training (OMMT) in autism and learning disabilities can be delivered within medical schools in England. The project is being led by the University of Plymouth and Brighton and Sussex Medical Schools, with help from Warwick, Leicester and Swansea Medical Schools. 

Our aims are

  1. To review the literature on autism and learning disabilities teaching for medical students  
  2. To ascertain the current level of autism and learning disabilities education taking place in medical schools in England. 
  3. To develop resources to help medical schools deliver the Oliver McGowan Mandatory Training (OMMT) to their students. These materials will be co-produced with people with learning disabilities, autistic people, their carers or people working for groups that support people with a learning disability or autistic people, along with medical school educators.
  4. To evaluate the programme in terms of process and its impact on student knowledge, understanding, attitudes and behaviours towards people with learning disabilities and autism. 

You can look here to find out about the OMMT (The Oliver McGowan Mandatory Training in Learning Disability and Autism). If you would like to know more about this project, please email Dr Stephanie Daley on s.daley@bsms.ac.uk.

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Other projects/groups at BSMS

There are a number of other teaching initiatives outside of Time for Autism at BSMS that you may like to be involved with. We are always delighted to welcome new volunteers so please find some information about these below. If you are interested, please do not hesitate to contact us for further details.

Time for Dementia

An award-winning programme to improve dementia care, Time for Dementia pairs families affected by dementia with undergraduate students studying healthcare, helping the students to gain a better understanding of living with dementia, and develop skills to provide better care for patients and their families. Students visit a family affected by dementia in pairs over a two-year period, which provides a unique opportunity to see people affect by dementia in their own home. The visits are designed to enable students to see how a diagnosis of dementia can affect people and the challenges and changes that they may face over time. For more information or to get involved please contact:

T: 07713 779582
E: timefordementia@alzheimers.org.uk 
W: bsms.ac.uk/time-for-dementia

The Patient Educator Group 

The Patient Educator Group members are involved in various learning activities at BSMS. Volunteers decide how they may like to be involved and this may include sharing experiences of living with chronic health conditions, or being an unpaid carer. The group also provide opportunities for students to practice taking medical histories, basic examinations or help role play health scenarios. All of these activities are highly valued by the students and help them develop key communication and clinical skills. 

The Patient Educator Group members are also involved in interviewing applicants to BSMS, to help us select which individuals are offered a place to study medicine here. If you would like to know more please contact us, as we would be delighted to answer your questions and welcome any new volunteers.

E: PatientEducatorsGroup@bsms.ac.uk 
W: bsms.ac.uk/patient-educator-group

Time for Dementia

Time for Dementia is a programme to develop, deliver and evaluate an innovative educational initiative, a longitudinal programme in dementia. 

More on our Time for Dementia Programme >