Autism Cymru

Autism Cymru was "Wales' national charity for autism" with offices in Cardiff, Wrexham, and Aberystwyth.[2] The organization was established by practitioners and collaborates with Wales Autism Research Centre (WARC), a research institute within Cardiff University. They also worked with the Welsh government, Autism Speaks and Autism Initiatives UK to affect the service delivery to people on the autism spectrum to establish public policy that will better meet the needs of the autistic community in Wales. They also wish to create best practices that may be used anywhere in the world.[2][3][4]

Autism Cymru
Founded2001
Dissolved
  • Stopped operations and information filing after September 2015, removed from the register on 22 November 2019.[1]
TypeNon profit
Registration no.1092527
FocusAutism
Location
  • Wales
Area served
Within and outside Wales
ServicesStrategic Influence of Governments; Collaborative practice, Education and training, Research and awareness raising.
MethodPractitioner led
Key people
Lord Dafydd Wigley, Professor Bill Fraser CBE, Dame Stephanie Shirley, Maggie Bowen Deputy CEO, Hugh Morgan OBE Chief Executive
WebsiteFormer domain no longer operational

History

The charity was founded in 2001 "to improve the lives of people in Wales with an autistic spectrum disorder and their families" by influencing major policy change, research and practice through education and training, research, awareness raising and collaborative efforts with other organizations.[2] Start-up funding for the organization was provided by Dame Stephanie Shirley's The Shirley Foundation.[5]

It was this charity which first created the concept of a government led national autism strategy, presenting the concept to Ministers in the Welsh Government in 2001. The Minister for Health and Social Services in Wales then announced on 4 December 2002 that the Welsh Government would develop the world's first national autism strategy in partnership with Autism Cymru. The CEO of Autism Cymru, Hugh Morgan OBE, chaired the development of the national autism strategy in Wales between 2003-2007. They then partnered with the Welsh Assembly Government to have it implemented, with Hugh Morgan seconded from the Charity to 'drive forward the implementation' from 2008-2011.[6][7][8] It also initiated and brought together the partnership including Autistica, the Welsh Government and Autism Initiatives to about the Cardiff University department of psychology's Wales Autism Research Centre (WARC) with the first named professorial chair in autism in Britain and the development of the Wales Autism Research Centre. Another first, Autism Cymru created the world's first national web-based information service[9][10] of AWARES.org for autistic people and their families. Since then, Autism Cymru's innovative approach to strategically influencing government been a model for charities in other countries, especially in Northern Ireland and Scotland where national autism strategies have also been developed recently.

As a founder member of the Celtic Nations Autism Partnership, it worked closely with its partner organizations, including Scottish Autism, Autism Northern Ireland, and the Irish Society for Autism.[11] On a larger scale, Autism Cymru works with organizations outside of the UK such as Autisme-Europe[12] and ICare4Autism in the USA. On 6 November 2012, Autism Cymru spearheaded a major event and call in the European Parliament for the development of a European Strategy for Autism, alongside members of the Celtic Nations Autism Partnership and Autisme-Europe hosted by Welsh MEP, Dr Kay Swinburne.

Most of the £9 million in additional Welsh Government funding since 2008-9 gained for autism through the Welsh autism strategy (derived from the original concept by Autism Cymru) has gone to fund local infrastructure for service delivery and research programmes largely in the public sector.[13]

Autism Cymru had held the Wales Autism International Conference in Cardiff 2004;[14] speakers have included Dr Tony Attwood, Professor Christopher Gillberg, Professor Rita Jordan, Dr Temple Grandin, Dr Lorna Wing and Professor Digby Tantam.[11][15] Past speakers also include Elizabeth Attfield, Mark Barrett, Danny Beath, Autism Cymru's Deputy Chief Executive Maggie Bowen, Colette Drift, Lynn Plimley, Hilary Kanaris, and Ros Blackburn.[16] The charity had sponsored the annual AWARES on-line conference for autism since 2006. The Attention Card programme was developed with Welsh emergency services and is being used by the police forces in Wales and during 2012 has been extended to other emergency services including a national approach to the Welsh Ambulance Services Trust.[13]

Autism Cymru was made Channel S4C's "Charity of the Year"; in 2003 was runner up in the UK Charity Awards for Children and Young People and in 2004 was Highly Commended in the Charity Awards.

Vision

Autism Cymru's vision statement was:

Autism Cymru is committed at promoting its services and activities on both national and local scale by focusing approaches on person oriented services to ensure each person in Wales gets the proper diagnosis, education, services, housing, independent living and employment opportunities by working strategically and collaboratively with multidisciplinary partners which include: other research, education, medical and housing organizations, as well as employment and service companies.[2]

People

Patrons and chair

The original funding for Autism Cymru was provided in the 1990s by president Dame Stephanie Shirley's Shirley Foundation, which is one of the top 50 grant-giving foundations in the United Kingdom.[5][17] The charity's President is Dame Stephanie Shirley and patron is Lord Dafydd Wigley.[13] The chairperson is Professor Bill Fraser CBE.[17]

Staff

Hugh Morgan OBE, FRSA, was formerly the first CEO of Autism West Midlands, working with them from 1988-2001, before becoming the founder CEO of Autism Cymru in 2001. He was the author of several books on autism including Adults with Autism: A Guide to Theory and Practice, Cambridge University Press 1996, ISBN 0521456835.[18] Maggie Bowen is the Deputy CEO.[19] The charity has no administrative staff; its trustees and staff have worked extensively with people on the autism spectrum and their families.[13]

Collaborators

Together with many other national and regional autism organizations, Autism Cymru provided a person-centered services approach through training, assessments, policies, and procedures. Through collaboration, such as with Autism Initiatives who have an infrastructure and adequate staff resources, they are able to support current and future initiatives.[2][4]

Membership

Membership for individuals was free and could be obtained by applying online through the official website.[13]

Autism Cymru activities

Autism Cymru's activities included awareness development, collaboration with other organizations to realize their vision, participation in research and enhancement of educational opportunities.[20] It worked with partners, such as Autism Initiatives and Wales Autism Research Centre (WARC), who had congruent objectives regarding training, awareness building, service and research.[3][4]

Awareness

It sponsored Holly's Ball and Emily's Ball, events set up by the Holly and Emily's mothers to raise awareness about autism. It also sought to raise funds for the National Autistic Society and Autism Cymru, while celebrating World Autism Awareness Day.[21][22]

Other organizations

Autism Cymru was a founder member of the Celtic Nations Autism Partnership, which was launched in collaboration with Autism Northern Ireland, Irish Society for Autism and the Scottish Autism in 2006/7; is a member of Autisme-Europe and had collaborations with others including Autism Initiatives and with Mudiad Ysgolian Meithrin.[20]

Governmental and justice organizations

Governmental and justice organizations that Autism Cymru collaborated with included: local health boards and authorities, all four Welsh Police Forces, and the Wales Ambulance Service Trust on the Emergency Services ASD Attention Card Scheme and training, and most powerfully, work with the Welsh Assembly Government. Their national AWARES website, when launched in 2002 was believed to have been "the first national resource website of its kind in the world".[6][20]

Research

Research activities included founding the partnership with Cardiff University and Autistica to create the Wales Autism Research Centre; and collaborations with Bro Morgannwg NHS Trust, S4C and other benefactors and Welsh universities.[20] In 2004, Autism Cymru commenced conducting on-line international conferences on autism featuring many of the leading world figures on autism.[11]

Education

Autistic Cymru manages the website for AWARES - the All Wales Autism Resource, which provides information for Welsh and English speaking autistic people in Wales and also runs the annual world on-line conference.[2][20][23] Hugh Morgan was quoted in 2002 by the BBC as having said: "AWARES is the start of a journey to create the largest online autism community in the country."[6] The inclusive schools and autism training and research programme received also endorsement from education minister Jane Davidson of the Welsh Assembly Government in 2006; over 500 schools across Wales have participated in the programme since 2006.[11] Autism Cymru has also run national schools forums in Wales since 2004.

Training and employment

Autism Cymru collaborated with The Irish Society for Autism on the 2009-12 European-funded Deis Cyfle, a project that receives some of its monies from the European Regional Development Fund. The project was launched on Monday 10 May 2010 and provides opportunities for people with autism in education and employment. It had served over 5,700 people across Wales and Ireland.[13][24]

Seminars

Adam Feinstein from AWARES ran a series of monthly one-day online seminars with leading figures from the world of autism. The online conferences were hosted by Autism Cymru.[25][26] The seminars help raise awareness of autism by inviting noted guest speakers and experts to address issues and answer questions. Guests have included Carol Gray, President of The Gray Center for Social Learning and Understanding, and Professor Gary B. Mesibov, one of the world's leading authorities on topics related to autistic children and adults' education issues.[13][27]

Autism Cymru ran a series of seminars on various locations with guest speakers addressing autism issues. Past speakers including Donna Williams, a person diagnosed with autism, a sociologist and qualified teacher and the author of nine published books.[28]

Publications

They also produced 'award-winning' book publications.[20]

Autism Initiatives and C-Saw services

Autism Initiatives and C-SAW in North Wales, former partners of Autism Cymru, provided services for children and adults through a creative approach and lifelong support. C-Saw provided social activities and services. Three social clubs — grouped by age ranges 8 to 16, 16 to 25, and 25 and up — provided opportunities to socialize, build confidence and gain life skills. There was also a quarterly coffee mornings club for parents. Services offered by C-Saw included counselling, community outreach, transitional program for young people into adulthood, and physical activities.[4]

Housing opportunities

The collaborative sought to obtain more partnerships especially housing associations, local authorities and other trusts to join the effort in bringing Welsh autistic people supported living projects and quality housing solutions, respite and short break services, to solve what was described as 'Tomorrow's Big Problem' by Hugh Morgan.[29]

See also

References
  1. Autism Cymru - Charities Commission Profile - 8 August 2020
  2. Autism Cymru. Archived 20 September 2012 at the Wayback Machine Politics.co.uk Retrieved 7 September 2012.
  3. WARC Archived 2012-12-22 at Archive.today Psych.cf.ac.uk Retrieved 7 September 2012.
  4. Autism Initiatives Wales Archived 6 April 2013 at the Wayback Machine Autism Initiatives Wales Retrieved 7 September 2012.
  5. Autism Cymru: Dame Steve Shirley to address Institute of Directors Archived 21 October 2012 at the Wayback Machine Politics.co.uk Retrieved on 15 September 2012.
  6. Autism website 'first of its kind'. BBC. 4 December 2002. Retrieved 14 September 2012.
  7. Europe can learn from Wales in dealing with autism. The Greens | European Free Alliance. Retrieved 17 September 2012.
  8. Leading Wales Award Leading Wales Award Retrieved 17 September 2012
  9. Wales spearheads autism research WalesOnline.co.uk Retrieved 15 September 2012.
  10. New autism study centre for Wales WalesOnline.co.uk Retrieved 15 September 2012.
  11. Autism charity proving a big success WalesOnline.co.uk Retrieved 15 September 2012.
  12. Plaid MEP gives Autism Cymru a European platform Archived 2013-01-03 at the Wayback Machine Jill Evans MEP Plaid Cymru Retrieved 15 September 2012.
  13. AWARES Archived 2012-08-20 at the Wayback Machine AWARES Retrieved 7 September 2012.
  14. "Autism is 'positive' for Welsh painter" WalesOnline.co.uk Retrieved 15 September 2012.
  15. Autism Cymru ASDinfoWales.co.uk Retrieved 15 September 2012.
  16. Autism Cymru education conference in Wrexham Archived 1 June 2013 at the Wayback Machine Politics.co.uk Retrieved on 15 September 2012
  17. Giving it large Guardian.co.uk Retrieved 15 September 2012.
  18. Adam Feinstein, A History of Autism: Conversations with the Pioneers, John Wiley & Sons, 2011. p. 89, 163. ISBN 1444351672 Note: Foreword by Dame Stephanie Shirley.
  19. Lynn Plimley, Maggie Bowen, The Autism Inclusion Toolkit: Training Materials and Facilitator Notes, SAGE Publications Ltd, 2008. Page ix
  20. Autism Cymru's Activities Archived 4 October 2012 at the Wayback Machine. Autism Cymru. Retrieved 14 September 2012.
  21. Holly's Ball Archived 2012-12-23 at the Wayback Machine Retrieved 7 September 2012.
  22. Emily's Ball Archived 6 January 2013 at the Wayback Machine Retrieved 7 September 2012.
  23. AWARES - the All Wales Autism Resource. Website managed by Autism Cymru. Retrieved 14 September 2012.
  24. Autism Cymru: Launch of Deis Cyfle Archived 4 October 2012 at the Wayback Machine Politics.co.uk Retrieved 16 September 2012
  25. Dan Goodley, Bill Hughes and Lennard J. Davis. Disability and Social Theory: New Developments and Directions. Palgrave Macmillan, 2012. ISBN 9780230243255
  26. Adam Feinstein, A History of Autism: Conversations with the Pioneers, John Wiley & Sons, 2011. p. xv, 1. ISBN 1444351672 Note: Foreword by Dame Stephanie Shirley.
  27. Autism Cymru: Professor Gary Mesibov comes to Wales. Archived 4 October 2012 at the Wayback Machine Polictics.oc.uk Retrieved 16 September 2012
  28. Autism Cymru: Autism seminar in Treforest Archived 4 October 2012 at the Wayback Machine Politics.co.uk Retrieved 15 September 2012
  29. Morgan, Hugh. Tomorrow's Big Problem:Housing Options for People with Autism: a Guide for Service Commissioners, Providers and Families. National Autistic Society, 2004. Chapter 5.2

Further reading
  1. Kenneth J. Aitken, An A-Z of Genetic Factors in Autism: A Handbook for Parents and Carers, Jessica Kingsley Publishers, 2010. ISBN 1843106795
  2. Anthony Bailey, Rowan Williams, Disabled Church - Disabled Society: The Implications of Autism for Philosophy, Theology and Politics, Jessica Kingsley Publishers, 2010. ISBN 1843109689
  3. Simon Baron-Cohen, Autism and Asperger Syndrome - The Facts, Oxford University Press, 2008. ISBN 0191578452
  4. Olga Bogdashina, Autism and the Edges of the Known World: Sensitivities, Language, and Constructed Reality, Jessica Kingsley Publishers, 2010. ISBN 1849050422
  5. Dave Griffiths, John Smythe, Change Directory of Social, Tom Traynor, Dave Casson, Directory of Grant Making Trusts, Directory of Social Change, 2005. ISBN 1903991587
  6. Glenys Jones, British Institute of Learning Disabilities Staff, University of Birmingham Staff, autism.west midlands (Organization) Staff, Autism Cymru Staff, Good Autism Practice: GAP: Celebrating the First 10 Years of the Journal, British Institute of Learning Disabilities, 2010. ISBN 1905218214
  7. Hugh Morgan 'Adults with Autism: A Guide to Theory and Practice, Cambridge University Press, 1996, ISBN 0521456835
  8. Rachel Pike, Talking Together about an Autism Diagnosis: A Guide for Parents and Carers of Children with an Autism Spectrum Disorder, National Autistic Society, 2008. ISBN 1905722370
  9. Lynn Plimley, Maggie Bowen, The Autism Inclusion Toolkit: Training Materials and Facilitator Notes, SAGE Publications Ltd, 2008. ISBN 141294757X
  10. Lynn Plimley, Maggie Bowen, Autistic Spectrum Disorders in the Secondary School, SAGE, 2006. ISBN 1412923115
  11. Lynn Plimley, Hugh Morgan, Maggie Bowen, Autistic Spectrum Disorders in the Early Years, SAGE, 2007. ISBN 1412923158

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