Northern Ireland's home grown Autism Society. Who
we are, Where we've been and where are we headed?
A brief history of Autism Northern Ireland (PAPA)
“Can you fax me that information today?” (Professional)
“What! The spuds are burning! You must be joking!” (Parent founder member of Autism Northern Ireland (PAPA))
This exchange will be familiar to many who were at the birth pangs of Autism Northern Ireland (PAPA). In the closing years of the 1980’s, much of the early Autism awareness and family support in Northern Ireland took place in the front rooms of committed parents and professionals to give you the history of Autism NI (PAPA) is to give you the history of Autism in Northern Ireland.
At this point the work of the “NI Association for Autistic Children”
must be recognised. This early parent’s society was established in
the 1970’s but was not to survive a particularly violent and volatile
period in our history in N Ireland when few social and economic issues were
properly addressed.
Autism, being so much a casualty of Northern Ireland’s civil unrest
as any other social or economic issue, had to depend on local passion as
any other social or economic issue, had to depend on local passion and initiative
rather than external benevolence. Hence, while the National Autism Societies
of England and the Republic of Ireland were established in the 1960’s,
Autism NI (PAPA) was only founded in 1990. The baton was finally passed
on from the earlier NI Autism Society.
The following milestones are a tribute to local initiative and the power of intelligent partnerships. In the journey from 1990 to the present day, Autism NI (PAPA) has never departed from its original Mission and Ethos. While proud of its professional standing in the world of Autism, Autism NI (PAPA) 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.
1989
- 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.
1990
- “Parents and Professionals and Autism Northern Ireland” [Autism
N.I. (PAPA)] 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.
1991
- 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. (PAPA) were gifted a
donation via a legacy left to The National Autistic Society from a family in Northern Ireland.
1992
- The first staff appointment was made for Autism in N.I with the post of Autism N.I (PAPA) 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.
1993
- 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 PAPA Branches (Parent Support groups) was initiated with the establishment of PAPA (Derry) branch.
1994 - 96
- DHSS funded Autism N.I (PAPA) to co-ordinate an independent evaluation of TEACCH.
- Autism N.I (PAPA) and Down Residential Project developed Ardcora (
the first N.I
residential service for people with Autism) - Autism N.I (PAPA) 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.]
1997 – 98
- Autism N.I (PAPA) lobbied DHSS regarding lack of diagnosis. Funding
was secured to
provide evidence of need. - Autism NI (PAPA) lobbied DHSS regarding lack of Diagnosis. Funding
was secured to provide evidence of need NI
Diagnosis Scoping Study
1997
- Autism N.I (PAPA) 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 (PAPA) “Licence to deliver five day TEACCH training model in N.I” alongside existing Down Lisburn/SEELB training site.
1998
- 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 (PAPA) first annual strategic planning weekend to further democratise the Charity.
1998 – 2000
- Autism N.I (PAPA) developed links with Autism Initiatives, Son – Rise Program, Dr. Lovaas (ABA) and the Higashi Institute. Autism N.I (PAPA) premises were used to facilitate parent’s co-ordinating AIT (Auditory Integration Therapy) and Secretin Therapy.
- Autism N.I (PAPA) published parents guide to interventions (Journeys: Choices Not Solutions)
1999
- Autism N.I (PAPA) 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.
- PAPA (Derry) Branch and Derry City Council publish research “Community Access” on how Council facilities can become “Autism friendly”.
1999 – 2002
- The Keyhole Early Intervention Project was coordinated by Autism N.I (PAPA) 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).
- Go to News & Research Section on website
2000
- The National Autistic Society (U.K) set up a duplicate service to PAPA in N.I breaking an earlier partnership agreement. An enquiry was launched by NAS Board and Autism N.I (PAPA)’s complaint was upheld. The NAS withdrew the following year due to funding difficulties in England.
2001 – 2002
- Task Group on Autism Report (Dept of Education). Autism N.I (PAPA) served on the working group of this Report which was the first government funded review of services for children with Autism.
- Autism N.I (PAPA) 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. [Ref: Lobby section of website].
2001
- DHSS agreed to establish Autism N.I (PAPA) as a strategic N.I ASD Training Agency. In 2004 a letter of commendation from DHSS was awarded to Autism N.I (PAPA)’s Training Department. View our full training prospectus
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.
2003 – 2006
- Autism N.I (PAPA)’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).
2004 – 2008
- Autism N.I (PAPA) 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. Go to News & Research Section
2004
- Dr. Lorna Wing and Dr. Judith Gould were our official guests at the opening of the Autism N.I (PAPA) Offices at Donard. The premises contain a training suite to enable the charity to further develop this core service.
- View WASP Evaluation
2005
- Autism N.I (PAPA) 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 (PAPA) (Ref what they say about us section)
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. View our Lobby section
- SPEAC (ABA education provider) joined this political lobby.
- NIPPA – The Early Years Organisation joined the lobby.
- Autism Initiatives and Autism N.I (PAPA) 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 (PAPA) 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 (PAPA) is a partner agency.
- Dept of Education’s evaluation of Early Intervention services was carried out by University of Ulster and Autism N.I (PAPA). Go to News & Research Section.
- 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 (PAPA) served on the Steering Group).Go to News & Research Section.
- European Autism Information System (EAIS) and European Autism Alliance [EAA]. Autism Cymru and Autism N.I (PAPA) 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 (PAPA) 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.
Ref: Special Edition of Autism NI “Contact” Newsletter.
We are grateful to all our parent and professional and political partners who combined to achieve this following two years of consistent and accelerating lobbying.
We need each other still. We stopped “Autism provision in Northern
Ireland” going into reverse.
Now we must refocus and continue our campaign for social justice as we strive
for equality.
2007: The Lead up to ASD Legislation
January
- The Northern Ireland Transitional Assembly Debate – unanimous support for the Northern Ireland Autism Act. See Lobby Section, Debates.
- The Welsh Assembly Launch of the Celtic Nations Autism Partnership (Autism Cymru/Autism NI/Scottish Society for Autism)
June
- The Northern Ireland Assembly Launch of the Celtic Nations Autism Partnership (Autism Cymru/Autism NI/Scottish Society for Autism/Irish Society for Autism). See our newsletter section.
September
- Northern Ireland Assembly ASD fact-finding delegation to Washington
- Autism NI witness historic documents Signed & Hilary Clinton endorses links. Click here for our newsletter section.
October
- “Walk for Autism” to Parliament Buildings, Stormont, Belfast.Click
here for our newsletters
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 (PAPA)’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
