Welsh Parliament

Cross-Party Autism Group

2022 Annual Report and Accounts

The Cross-Party Autism Group marked its 20th anniversary in 2022. Since its establishment, the group has played a key role in bringing autistic people, their families, friends and carers together with professionals and Members of the Senedd to discuss services and support.

1. Group membership and office holders

Chair: Mark Isherwood MS

Other members:

Paul Davies MS

Hefin David MS

Heledd Fychan MS

Mike Hedges MS

Joyce Watson MS

Secretary: Chris Haines, National Autistic Society Cymru

Note: Tim Nicholls, head of influencing and research at the National Autistic Society, resigned as secretary at a meeting on December 13, 2021, after the charity recruited a new external affairs manager in Wales. Chris Haines was elected as secretary at the same meeting.

2. Group meetings

The Cross-Party Autism Group has held four public meetings over the past year: in December 2021 then March, June and October 2022. Due to the coronavirus pandemic, the group did not meet from February 2020 until it was re-established at the start of the Sixth Senedd.

Meetings have been held virtually over Microsoft Teams, with October’s annual general meeting being held in a hybrid fashion and some members joining in person at the Well-being Hub in Wrexham. Summaries of the issues discussed and a list of attendees can be found below:

December 13, 2021 – Virtual meeting

Overview: Julie Annetts, head of Welsh Government’s learning disability, autism and neurodevelopmental conditions team, gave an update on the Code of Practice on the Delivery of Autism services. She outlined work to align policy by removing silo working, fostering collaboration, promoting integration and identifying gaps. Julie Annetts told the group that policy priorities include implementation of the statutory autism code as well as an integrated all-age neurodevelopmental conditions plan.

The group also heard from Dr Sarah Broadhurst, director of the Autism Education Trust, who gave an overview of the AET’s work in England. Dr Broadhurst said the AET has developed eight good autism practice principles and research-led standards frameworks for early years, schools and post-16. She invited views on the AET’s plans to work with stakeholders to develop a standards framework for the Welsh context.

Felicity Stephenson, from the National Autistic Society, provided an overview of a good practice guide for mental health professionals; Davina Carey-Evans gave a presentation on Piws, a project which aims to make Wales more accessible; and Ruth Rabet spoke about the Hidden Disabilities Sunflower.

Attendees: Mark Isherwood, Heledd Fychan, Carolyn Thomas, Rachel Brown, Julie Annetts, Sarah Broadhurst, Felicity Stephenson, Davina Carey-Evans, Ruth Rabet, Chris Haines, Marie James, Samantha Lambert-Worgan, Catherine Vaughan, Frances Rees, Einir Price, Rob Newton-Miller, Tim Nicholls, Elaine Jennings, Amanda Daniels, Kirsty Jones, Gemma Jones, Aoife Pryor, Amanda Evans, Beth Edwards, Claire Bullock, Caroline Rawson, Jacquelyn Elias, David Davies, John Price, Kieran Fraser, Leanne Mathers, Kelly Preston and Dan Rose

March 7, 2022 – Virtual meeting

Overview: Steffan Davies, a PhD candidate at Swansea University, presented the findings of his report on the education of autistic pupils in Wales. A key theme of his research was differing levels of satisfaction with mainstream and specialist provision. Only 48% of pupils felt included in mainstream settings compared to 78% in specialist schools. Mr Davies gave an overview of results from surveys of autistic pupils, parents/carers and educators. He highlighted a key theme with 77% of education professionals feeling they have a good understanding of autism, falling to 50% when parents were asked and 28% among pupils.

Amber Spiller, Natasha Castelini and Simon Mustoe – from HMP Parc – also gave a presentation about the prison’s UK-leading work on neurodiversity. They highlighted statistics on people with a learning disability in prison, saying they are three times more likely to spend time in segregation or have clinical depression. They also pointed to barriers faced by people with learning disabilities, such as a lack of privacy, difficulty meeting sensory needs and exploitation risks. Mr Mustoe highlighted that the prison has been recognised by the National Autistic Society and the Royal College of Nursing as a beacon of best practice.

Attendees: Mark Isherwood, Carolyn Thomas, Steffan Davies, Amber Spiller, Natasha Castelini, Simon Mustoe, Chris Haines, David Fox, Ceri Low, Claire Bullock, Rachel Brown, Beth Ryan, Barbara Howe, Keith Ingram, Harvey Philpott, David Evans, Enid Morris, Jacquelyn Elias, Willow Holloway, Eleri Walters, Sam Walsh, Stephane Guidon, Steffan Phillips, Sioned Thomas, Siôn Edwards, Sarah Broadhurst, Samantha Lambert-Worgan, Dan Rose, Rehema Gakoto, Rachel Hancocks, Monique Craine, Michael Williams, Lindsay Brewis, Leanne Mathers, Karen Shepherd, John Price, Jo Phillips, Jan Roberts, Ryland Doyle, Davina Carey-Evans, Amanda Evans, Beth Edwards, Anne Woods, Aimee Louviere-Cowen, Carys Holt, and Enid Harris

June 13, 2022 – Virtual meeting

Overview: Willow Holloway – a director of Autistic UK as well as chair of the board of directors at Disability Wales – reflected on the Autistic Women’s Empowerment (AWE) project, which she officially launched seven years ago on June 13, 2015. She explained that the AWE project was launched to empower autistic women and girls by developing a network and providing peer support. She told attendees that the project was initially started to raise awareness but it has become a vehicle to campaign for recognition and acceptance.

Kat Williams, a non-executive director and research involvement lead at Autistic UK, outlined research projects including a systematic review of autistic women’s experiences of infant feeding – a project led by Aimee Grant at Swansea University. She also outlined a review of autism health passports and a study into community-based language preferences for multiple developmental disabilities.

Attendees: Mark Isherwood, Carolyn Thomas, Willow Holloway, Kathryn Williams, Aimee Grant, Amy RL Hughes, Bethan Edwards, Bethan Gilson, Bill Fawcett, Carys Holt, Catherine Edevane, Catherine Vaughan, Cllr Jane Tremlett, Dave Evans, David Vittle Thomas, Steffan Davies, Debbie Shaffer, Debbie Jackson, Debra Mitchell, Ryland Doyle, Elaine Jennings, Frances Rees, Rebecca Gooch, Eleri Griffiths, Rachel Hazelwood, Heather Lucas, Helen Bucke, Keith Ingram, Janet Williams, Jo Taylor, John Price, Jolene Martin, Kieran Fraser, Kirsty Jones, Lindsay Brewis, Michael Imperato, Michael Williams, Monique Craine, Nicole Mitchell Meredith, Paula Shoosmith, Rebecca Lydon, Dan Rose, Samantha Williams, Selina Johnson, Sheladevi Nair, Shah Shumon, Sian Owen, Siôn Edwards, Sioned Thomas, Stephane Gidon, Suzanne Rinvolucri, Rachel Brown, Einir Price, Heledd Roberts and Chris Haines

October 24, 2022 – Hybrid annual general meeting from Well-being Hub Wrexham

Overview: Mark Isherwood MS was re-elected as group chair after being proposed by Carolyn Thomas MS, while Chris Haines was re-elected as secretary.

Dr Duncan Holtom, Head of Research at People & Work, provided an overview of the findings of the review of the demand, capacity and design of neurodevelopmental (ND) services. He told the meeting that despite investment in children’s ND services and the Integrated Autism Services, which have made Wales a pioneer, long waiting lists have developed. DH said for every two children or adults referred for diagnosis, only one was undertaken. He added that capacity is constrained by the small size of teams which leaves services particularly vulnerable to recruitment and retention problems. DH said the working group identified three key goals: swifter access to early help and support, swifter access to specialist assessment, and equity of access to services and support. He told members that this will be underpinned by a ‘no wrong door’ whole systems approach, which is more person-centred and provides support based on need rather than diagnosis. DH also stressed the need for increasing awareness and understanding of neurodiversity.

Julie Annetts, head of the neurodevelopmental policy team, outlined Welsh Government’s response to the review. She highlighted the Deputy Minister’s announcement of an additional £12m investment to March 2025. JA also pointed to the role of the new neurodevelopmental conditions ministerial advisory group. She explained that the new three-year improvement programme will have three work streams. The first is taking immediate action to provide additional support to reduce the ‘here-and-now’ pressures on assessment services and put in place much-needed support for parents and families. The second will co-produce and test models to reform ND services in the longer term. The third will focus on cross-cutting priorities, such as a workforce strategy and improved data collection. JA added that the National Autism Team will become the National ND Team, with Donna Sharland leading the transformation. She highlighted engagement events taking place across Wales which will help share the ND conditions improvement programme.

Attendees: Mark Isherwood MS, Carolyn Thomas MS, Dr Duncan Holtom, Julie Annetts, Dr Alberto Salmoiraghi, Andrea Hughes, Ioan Bellin, Catie Parry, Ceri Low, Christy Hoskings, David Fox, Steffan Davies, Keith Ingram, Jan Thomas, Karen Shepherd, Kathleen Eley; Katie Hiscox, Kirsty Jones, Kyle Jamie Eldridge, Lee Green, Liz Fletcher, Lynette Hibbert; Monique Craine, Nicole Mitchell-Meredith, Liz Ponting, Kirsty Rees, Rosie Edwards, Ruth Rabet, Samantha Lambert-Worgan, Sian Owen, Steffan Phillips, Sioned Thomas, Stephane Guidon, Stephanie Shobiye, Alexander Still, Sue Evans, Suzanne Rinvolucri, Vaugn Price, Gareth Williams, Willow Holloway, Yvonne Odukwe. Catherine Vaughan, Eleri Griffiths, Shelly Godfrey-Coles, Katherine Wyke, Heather Lucas, Chris Haines, Elaine Jennings, David Jennings, Gillian Brokeley, Bethan Kendall, Rachel Hancocks, Justin Hurst and Helen Wilson.

2023 – The following dates and times have been provisionally set for the Cross-Party Autism Group’s meetings in 2023. Venues will be confirmed closer to the time.

· Monday 23 January (10.30am-noon)

· Monday 24 April (10am-11.30am)

· Friday 14 July (10.30am-noon)

· Monday 16 October (10.30am-noon)

3. Professional lobbyists, and voluntary or charitable organisations
with whom the group has met during the preceding year

Mark Isherwood MS, chair, and Chris Haines, secretary, met Mia Rees, a professional lobbyist for Deryn Consulting Ltd, alongside representatives from the British Psychological Society to discuss the organisation’s best practice guidelines on September 24, 2021.

In addition, representatives of the following voluntary or charitable organisations have attended group meetings over the past year: