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History of Autism NI
In the journey from 1990 to the present day, Autism NI has never departed from its original Mission and Ethos. While proud of its professional standing in the world of Autism, Autism NI has never lost sight or touch with its humble origins. It is still a very personal organisation built upon evidence of real and immediate need as a result of its work in the field of action research.
Autism NI Timeline
Autism NI's Journey
The ASD journey in Northern Ireland is also the story of the development of Autism NI as Northern Ireland's Autism charity and as the centre of the Autism movement across local communities through an expanding network of parent groups.
The formation years (1990 - 2000) are characterised by innovative evidence-based research of need as well as pioneering service development by committed professionals, passionate campaigning by families and accelerating knowledge assisted by visits from world renowned ASD experts.
Strategic development within Health and Education alongside ASD budgets commenced in 2001 but government departments have been reluctant to accept the challenge to develop joined up strategies within a legislative framework. The Autism Bill will assist this final stage to greater equality and social justice for individuals with ASD in Northern Ireland.
The CNAP Policy Summit (DHSSPSNI and Autism NI) was held in Belfast on 2nd May 2013 and brought all 11 NI Executive Departments together for the first time to debate the implementation of the cross departmental NI Autism Stratgey using examples from CNAP national governments to inform the discussion.
CNAP Policy Summit was held with Welsh Government, Autism Cymru and Autism Europe at EU Parliament in Brussels.
Autism NI CEO Arlene Cassidy was recognised for her work within the Autism community and was awarded an honory doctorate from University of Ulster.
Autism NI launched the 'Light it up Blue' campaign and many local authorities in Northern Ireland lit up their Council buildings in blue to raise awareness for Autism.
Dr Arlene Cassidy was appointed as Chair of the Northern Ireland Autism Strategy and Research Advisory Committee due to her expertise and knowledge in the field of Autism.
March 2011 - Autism (NI) Act 2011
The Autism (NI) Act passed its final stage and received royal assent to become legislation in August 2011.
- The Autism Bill (NI) had its first reading in the NI Assembly.
October 2010 - 20th Anniversary Ball
- The Autism NI 20th Anniversary Ball was held at the La Mon House Hotel on the 8th October. The Ball had a Black and White theme and was attended by many parents from throughout the 20 years of the organisation’s existence. We would like to thank all those who attended the event and the many businesses and organisations who attended and provided spot prizes and auction items.
September 2010 - Launch of study ‘Is Anyone Listening?’
Autism NI revealed crucial findings from the key research report ‘Is Anyone Listening?’ at the recent launch at the Long gallery at Stormont Buildings. These findings provide an in-depth insight into the levels of stress and trauma experienced by families supporting individuals with Autism Spectrum Disorder (ASD) and also the professionals who work with those families. Launch of Study "Is Anyone Listening?"
June 2010 Night at the Museum – Autism NI 20th Anniversary
- Our 20th Anniversary event at the Ulster Museum in June was a night of nostalgia, celebration and entertainment. We had members of the organisation who were there from the outset, the Laura Millen Award for Speech and Language, the introduction of our new patron and the screening of ‘Mozart and the Whale.’ Read more about Autism NI 20th Anniversary
Launch of the ‘Hidden Community’
- A report on a model of effective family support ‘Autism in Northern Ireland—A Hidden Community’ was launched in April at the Long Gallery, Stormont. The report highlighted many positive elements in the model none moreso than its main building block of having parents in the role of professionals which enables them to use their specialist knowledge and expertise to support other parents and carers. Read more about the Launch of the Hidden Community
- Autism NI held it's first fundraising and awareness event for World Autism Awareness Month in the grounds of Stormont. This day consisted of a sponsored 5K walk as well as a family fun day and was attended by over 400 supporters.
February 2010 - Voyager Award for Autism NI
- Autism NI has won a prestigious Voyager Award in recognition of our leadership role in the area of political impact for social change. The Voyager Leadership Awards, established by CO₃ (the professional organisation of Chief Officers in the 3rd Sector) to celebrate excellence in leadership in the Voluntary and Community Sector, were presented at a glittering ceremony on the evening of Thursday 4th February. Read more about the Voyager Award for Autism NI
October 2009 - Successful Launch of Alert Card
- The Reducing the Risks Conference in October gave the audience and speakers the opportunity to share and disseminate good practice and hear about other work being carried out in relation to this area. Read more about the Launch of Alert Card
August 2009 - Autism NI's first overseas trek - Ben Nevis
- Over 30 adventure seekers took on the 'challenge of a lifetime' by climbing the UK's Highest Mountain, Ben Nevis. They managed to raise over £12,500 for Autism NI.
May 2009 - Health Committee Hold Meeting at Autism NI
- The Northern Ireland Assembly saw at first hand the vital work of two local Autism charities, which provide a range of services for individuals with Autism Spectrum Disorder (ASD) and their families. Read More about Health Committee Hold Meeting at Autism NI
March 2009 - Keith Stands Up for Autism
- March 31st saw parents, members and friends of the Autism community coming together at the ‘Stand Up for Autism’ rally, organised by Autism NI which was held at Parliament Buildings, Stormont in recognition of World Autism Awareness Day (2nd April). It also acted as a platform to call on politicians across the province to recognize the need for Autism-specific legislation in order to protect the rights of the 20,000 people affected by Autism within Northern Ireland. Amongst those lending their support was members of the our Branches and Support Groups as well as Keith Duffy from Irish pop band, Boyzone. Read more about Keith Stands up for Autism
- Family Support – After 20 years of providing a voluntary service, Health & Social Care Trusts agreed Service Level Agreements with Autism NI to provide a Community Development based Family Support Service linked to Statutory Transition Teams.
- Training Department – Criminal Justice System, Social Health & Social & Life Skills have been added to team provision. Accreditation of courses by AQA progresses. E-Learning Module on Autism in Partnership with University of Ulster has been established and is underway.
- Family Support - 2 Research Projects were commissioned. The first is a review of Autism NI’s provision and the second is original research regarding the traumatic impact of Autism.
- Social & Life Skills Project.
- Health Awareness.
- Lobby – Autism NI provides the Secretariat to the All Party Assembly Group on Autism (Established January 2008).
2007 – Future Services to meet growing need?
- The future is inevitably committed to political action aimed at securing the necessary resources to effect quality service development at local level.
- The future must include the development of Autism N.I’s capacity to meet local need, primarily through its family support and specialist training services, in partnership with relevant agencies.
- The future will therefore include a higher profile for the organisation as we position ourselves credibly to represent the real opportunities and solutions that are possible if we achieve our three key lobby aims :-
- An ASD Programme of Care
- A Northern Ireland ASD Strategy
- A Northern Ireland Autism Act
- “Walk for Autism” to Parliament Buildings, Stormont, Belfast.
- Northern Ireland Assembly ASD fact-finding delegation to Washington
- Autism NI witness historic documents Signed & Hilary Clinton endorses links.
- The Northern Ireland Assembly Launch of the Celtic Nations Autism Partnership (Autism Cymru/Autism NI/Scottish Society for Autism/Irish Society for Autism).
2005 – 2007
- These are the years of developing and maintaining partnerships, e.g.
- Autism Cymru and Autism N.I launched their political lobbing partnership for U.K legislation for Autism and produced the first political lobby report for ASD in the U.K. “Government and Autism: Opportunities and Solutions.
- SPEAC (ABA education provider) joined this political lobby.
- NIPPA – The Early Years Organisation joined the lobby.
- Autism Initiatives and Autism N.I signed a formal partnership agreement aimed at promoting positive co-operation and quality provision.
- NIPPA [The Early Year’s Organisation], Barnardos and Autism N.I are partners in the promotion and delivery of Keyhole Early Years Training Programme launched by Lord Rooker (Children’s Minister) in April 2006.
- “Employment for Autism” is an E.U funded project led by The Orchardville Society. Autism N.I is a partner agency.
- Dept of Education’s evaluation of Early Intervention services was carried out by University of Ulster and Autism N.I .
- Young people with Asperger Syndrome. Research has been initiated by the Children’s Commissioner and was completed by the Birmingham University ASD Research Team. (Autism N.I served on the Steering Group).
- European Autism Information System (EAIS) and European Autism Alliance [EAA]. Autism Cymru and Autism N.I are collaborating parties in this E.U funded project to effect standardisation of the definition of Autism across Europe and to establish a professional Autism Lobby.
- Parent contact service with SHSSB following on from their Children with Autism Strategy 2005 recommendations.
- WHSSB Autism Strategy 2006/07. The decision to develop this strategic approach to Autism development was prompted by a sustained lobby from Autism N.I culminating in the securing of Speaking Rights at the Executive Board (WHSSB) Autism was introduced as one of the Board’s 15 key priorities.
- DHSSPS commissioned “NI ASD Training Strategy” Study (UU/Autism NI) 2007.
Our Finest Hour?
At the March 2006 Whitehall Launch of the Autism Cymru/Autism NI partnership and the publication of the “Government and Autism” document, the Secretary of State (The Rt Hon Peter Hain) listened to Autism NI and:
- Overturned the Bamford recommendation that the “organisational responsibility for Autism” should sit within the Mental Health Programme of Care.
- Requested a meeting with Autism NI to understand the status and progress the profile of Autism within N Ireland.
- Autism N.I was recognised by the House of Commons as N. Ireland’s National Autism Society. (Early Day Motion 467)
- The NI Children’s Commissioner (the late Nigel Williams) commends the role of Autism NI
- Dr. Lorna Wing and Dr. Judith Gould were our official guests at the opening of the Autism N.I Offices at Donard. The premises contain a training suite to enable the charity to further develop this core service.
2004 – 2008
- Autism N.I developed a partnership with WHSSB to pilot and provide an Early Intervention Service funded by The Children’s Fund (N.I Executive Funds). This service has been evaluated by the University of Ulster Health Services Team led by Prof. Roy McConkey who led earlier evaluation of “Keyhole” and Rainbow Resource Kit Project. He was also involved in the N.I Diagnostic Scoping Study of 1998/99.
2003 – 2006
- Autism N.I’s lobby to promote the development of early intervention services continued with the securing of funding to develop a practical early years home learning resource – Rainbow Resource Kit. The project has produced a training package and resource books and materials. These can be accessed through Autism N.I Training Department. (Research Report: Connecting with Autism (CWA), University of Ulster, 2006).
2003 – 2004
- DHSS “Priorities for Action” document (a guide to public spending) referenced Autism for the first time. In 2004, the first health sector funding for Autism was released to address the need to develop assessment, diagnostic and early intervention provision. Incremental increases were halted after this initial year, leaving services devoid of development money for the next few years.
- DHSS agreed to establish Autism N.I as a strategic N.I ASD Training Agency. In 2004 a letter of commendation from DHSS was awarded to Autism N.I’s Training Department.
2001 – 2002
- Task Group on Autism Report (Dept of Education). Autism N.I served on the working group of this Report which was the first government funded review of services for children with Autism.
- Autism N.I began its strategic lobby with the N.I Assembly. A year of individual briefings with ministers, politicians, as well as presentations to Assembly Committees also witnessed the first two debates on ASD at a political and legislative Assembly in N.I. In November 2002, each of the N.I Political Parties nominated representatives to act as N.I Assembly Autism Ambassadors.
- The National Autistic Society (U.K) set up a duplicate service to Autism NI in N.I breaking an earlier partnership agreement. An enquiry was launched by NAS Board and Autism N.I’s complaint was upheld. The NAS withdrew the following year due to funding difficulties in England.
1999 – 2002
- The Keyhole Early Intervention Project was coordinated by Autism N.I to address growing concerns about the lack of practical support for children and families post diagnosis. The Keyhole partnership of parents, statutory and voluntary agencies designed an intervention package promoting the three core elements of:
- Parent Training [ACCESS Workshops]
- Professional Training (KEYHOLE for early years training course)
- A six month Home Visiting Programme based upon TEACCH, PECS, HANEN and ABA principles. N.B Keyhole is the (University of Ulster evaluated) ASD Early Intervention methodology adopted by SHSSB (2002) and WHSSB (2004).
- Autism N.I secured “in year” funding from ten of the Health and Social Services Trusts to employ two development officers to oversee the development of family support and the Branch Network. Staff members totalled three at this point and the branch network consisted of ten groups across the province that organised monthly meetings and family fun days.
- Autism NI (Derry) Branch and Derry City Council publish research “Community Access” on how Council facilities can become “Autism friendly”.
1998 – 2000
- Autism N.I developed links with Autism Initiatives, Son – Rise Program, Dr. Lovaas (ABA) and the Higashi Institute. Autism N.I premises were used to facilitate parent’s co-ordinating AIT (Auditory Integration Therapy) and Secretin Therapy.
- Autism N.I published parents guide to interventions (Journeys: Choices Not Solutions)
- The first local wave of ASD Diagnostic Clinics were established, led by Down Lisburn Health and Social Services Trust and followed by Homefirst and Foyle Trusts. N.B this development was driven by committed professionals who secured clinic time at a cost to themselves and genetic services.
- Autism N.I first annual strategic planning weekend to further democratise the Charity.
- Autism N.I and the N.I Child Health Organisation agreed to work together to access training for local paediatricians in the diagnosis of Autism. Training was secured from Dr. Judith Gould (Director, Centre for Social and Communication Disorders, London) who developed training in N.I to 23 professionals in 1997 and 1998.
- Division TEACCH (N. Carolina) grant Autism N.I “Licence to deliver five day TEACCH training model in N.I” alongside existing Down Lisburn/SEELB training site.
1997 – 98
- Autism N.I lobbied DHSS regarding lack of diagnosis. Funding was secured to provide evidence of need.
- Autism NI lobbied DHSS regarding lack of Diagnosis. Funding was secured to provide evidence of need NI Diagnosis Scoping Study
1994 - 96
- DHSS funded Autism N.I to co-ordinate an independent evaluation of TEACCH.
- Autism N.I and Down Residential Project developed Ardcora ( the first N.I residential service for people with Autism)
- Autism N.I and Barnardos / Positive Futures initiated a lobby to highlight the lack of diagnostic expertise locally. [Ref: Glenavna Hotel Conference 1996 with Dr. Judith Gould.]
- Lisburn Branch was established in 1996. [N.B. Access to TEACCH was limited to children with a clinical diagnosis of ASD. To access a diagnosis many parents were travelling to England to access private diagnosis.]
- The TEACCH conference – The first ASD specific intervention came to N Ireland.
- Department of Health and Social Services core funding was secured for a 3 year term for a part time Development Officer and some clinical support.
- The Department of Education funded TEACCH training for SLD schools in N.I. The network of Autism NI Branches (Parent Support groups) was initiated with the establishment of Autism NI (Derry) branch.
- The first staff appointment was made for Autism in N.I with the post of Autism N.I Development Officer. This was a six month part time post with no clerical support. The first Development Officer was Arlene Cassidy, now the Chief Executive.
- The Stranmillis College (Q.U.B) conference. This was the first of what came to be an annual conference initiative with Barnardos until 1996. We then developed a separate workshop/seminar/conference programme of events. The aim was to invite world experts in Autism to N.I. to give us direct access to information. Autism N.I. were gifted a donation via a legacy left to The National Autistic Society from a family in Northern Ireland.
- “Parents and Professionals and Autism Northern Ireland” [Autism N.I.] received charity status and regular meetings were held in Wallace Avenue Adult Day Centre and then Friends School, Lisburn. Parents from all over Northern Ireland began to attend and the partnership ethos with professional colleagues was established.
- A Social Worker in Lisburn, Co. Down brought a group of parents together for mutual support because their children had a “rare” condition which she thought was Autism.