Development of Pasda and the Autism Strategy
1995 – Informal beginning of PASDA
A group of 3-6 parents with children began to meet to discuss their difficulties and how they could learn from each other’s experience. The meetings were facilitated by Charlene Gallagher from the Scottish Society for Autism and held at Bonnington Resource Centre, Edinburgh once a month.
1998 – Move to formalise the group
A meeting in Edinburgh was called by Jane Neil-McLachlan of Lothian NHS and Moira Dickinson (a founder parent carer) to discuss establishing a formal parents group to campaign and share ideas. The name PASDA (Parents of Autism Spectrum Disorder Adults) was chosen to describe the group. The group met monthly and sometimes invited speakers.
- The monthly meeting became the core of the PASDA group where the members were able to feel less alone.
- It moved to more appropriate premises at the Voice of Carers Across Lothian (VOCAL) offices in Johnston Terrace which was more convenient.
2000 – The Scottish Executive had gradually realised that a review of services was required before full devolution was implemented and the costs assessed by central government. The “Same As You” was published to outline a 10 year plan for development of services. There was one recommendation for autism, that the two NGO’s in Scotland and local authorities should establish a national network.
2001 – The Public Health Institute of Scotland (PHIS) published their report “Autistic Spectrum Disorders” in 2001 and made 32 recommendations.
2002 – First constitution of PASDA
PASDA became a constituted body with Moira Dickinson as Convenor, Susan Chambers/Suzy Wong joint secretary and Mike Bruce, Treasurer. Constitution available.
2003
An “Autism Day” was held at Heriot-Watt campus and it was agreed to set up the Scottish Autism Network where professionals could go for advice. It was largely a telephone service for schools and social workers and not a centre.
BIG Lottery funding application to create information centres for families
PASDA met with Jane Neil-McLachlan, Adult Autism Co-ordinator for Lothian Primary Care Trust, Lynda MacLeod of IntoWork and Mike Bruce of ELAS. It was clear a centre with experienced and skilled staff who could direct families to appropriate services was required. An application was submitted for funds from the BIG lottery. The bid was successful and the Scottish Executive awarded Edinburgh and Glasgow £250,000 each to set up a service. In Glasgow the Autism Resource Centre was established and in Edinburgh the One Stop Shop which was guided by a Steering Group of interested parties.
2004
The Scottish Intercollegiate Guidelines Network “SIGN 50 A guideline developer’s handbook” was published to assist practitioners make a decision about appropriate care. Autism was mentioned in relation to children and young people up to 18.
Birth of the “One Stop Shop”
In Edinburgh a working group of Jane Neil-McLachlan, Moira Dickinson and others drew up specifications for the proposed service, tender documents, and interviewed service providers. The project went out to tender and the “One Stop Shop” started life at the Eric Liddell Centre. It was managed by 3 staff employed by Autism Initiatives.
2005 – “One Stop Shop” renamed “Number 6”
The “One Stop Shop” found a new home and moved to Autism Initiatives premises at 6 Melville Crescent and became known as “Number 6”. Post-diagnosis most families need information and the staff became the main support offering guidance on the condition, how to deal with challenging behaviour and ran activity groups.
2008 – Founder member Suzy Wong died after a long illness
The result was a blow and it became quite hard to continue as the group had lost a valuable asset and campaigner. Before she died Suzy and Moira had been looking for secretarial support for PASDA and contacted Edinburgh Development Group (EDG). EDG appointed a member of staff to attend 3 meetings to assess if the group should continue or wind up the assets. After consultation of the 30 members it was agreed to continue if they could have secretarial support from EDG.
2009 – First successful funding application for PASDA
In March 2009 Maureen Martin of EDG facilitated a meeting of the members. The ideas and wishes of the carers became our vision and strategy for the next year and a successful application was made for funding from Long Term Conditions Alliance (LTCAS) to employ a full-time person.
2010 – PASDA employs its first project worker
- In April 2010 Karina Williams was engaged for a year to run our project and a partnership was developed with Autism Initiative to use their premises, HR, payroll and IT systems.
- Two goals were highlighted in the funding, which were to produce an A-Z guide to services in Edinburgh and the Lothians and organise therapy workshops to reduce anxiety of the carers.
- EDG continued to be supportive and offer advice but once Susan Chambers and Gordon Wood agreed to be co-convenors EDG gradually withdrew and left PASDA to our own devices.
2011 – Successful funding applications
LTCAS funding extended until 2012 to run a partnership project with Scottish Autism’s autism advisors. They provided PASDA families with one to one advice and ran a 9-week support programme for us and a one-off independent living skills workshop. PASDA used this funding for two other projects, the first was to revise the A-Z guide resulting in the second edition known as “PASDA Handbook” 2012 and the second project was to collect a number of stories written by parents and carers of adults with autism entitled the “Adult Autism: The Family Perspective”.
National Carers Organisation grants to run several training courses in Edinburgh and the Lothians. This was well received and many families were able to grasp a better understanding of the underlying differences in the ways that family members think and act.
Monument Trust grants to provide the core funding that allowed the services to develop over the next 2 years including continued employment of the development worker and engagement of a project assistant, increased carers groups for social and discussion meetings and regular information meetings.
PASDA now had contact with over 220 families.
2011 – Key Governance Events (Constitution, HMRC and OSCR)
12 October 2011 – The current version of the Constitution was signed.
12 October 2011 – HMRC charitable status awarded effective from this date.
20 October 2011 – PASDA was registered as a Charity with the Office of the Scottish Charity Regulator (OSCR).
The Autism Strategy was published and more funding was made available.
- PASDA applied successfully in a partnership bid with VOCAL to train advocates, set up a matching family database and information surgeries specifically for families with an autistic family member.
- Another part of the funding was used to provide information sessions for families with a recent diagnosis run by PASDA employees in association with Taylor Ed Foundation.
2012
PASDA successfully applied to Pilotlight, which offers business advice and experience to charities, in order to work in partnership and develop our strategy and vision.
On the 5th September 2012 over 100 people attend the LTCAS funded event, “Adult Perspective” to raise the profile of autism.
2013
BIG Lottery funding awarded April 2013.
Pasda Connect project was initiated.
Pasda took part in the Rotary Club organised Forth Bridge Abseil.
Move to Norton Park August 2013.
Recruited Graeme Syme April 2013, Danni Szerszynska, Rachel Pickett and Donna Nelson Aug 2013.
Mike Bruce, Treasurer, retired October 2013.
Simon Aves appointed as Treasurer.
Tom Mitchell employed as Financial examiner October 2013.
Karina Williams, Project Manager, resigns November 2013.
2014
Dylan Hamilton appointed as Project Manager, January 2014.
The name PASDA was changed to Pasda.
Judith Younger appointed as Fundraising Officer, October 2014.
Successful funding bids – ADF 3 & 4, Creative Breaks.
Radio interview with Iriss.fm.
Nominated for Partnership award for work with Richmond Fellowship on Positive Pathways.
2015
First residential workshop for carers held in Peebles.
BIG Lottery Application for next phase of development – the Hub. Louise Middleton appointed as Pasda Community Garden Worker, at “Craigie’s Environmental and Education Project” one day a week. Funding provided by Post Code Lottery.
2016
Complementary Therapy Service and Counselling Service launched from various funders.
Nominated for National Autistic Society Autism Professional Award.
The Big Lottery fund finished, 31st August and all BL staff contracts ended. The office space was reduced to 2 hot desks in the same office and all carer groups continued with facilitation of volunteers. Pasda began the process to be re-constituted as a Scottish Charitable Incorporated Organisation.
2017
In April C Purdie was employed as the Communications officer funded by City of Edinburgh council. An entertaining evening of musicians and comedians was held at the Granary as part of World Autism Awareness Week. Fund raising involved an abseil, decorating the Christmas tree at St Andrew’s and St George’s West in George Street. Funding applications were made to Scotrail for complementary therapy and Santander for budgeting workshops and will start in 2018. Several other very successful workshops were held, IT for beginners, Understanding Autism, Sensory Spectacle for sensory perception difficulties, Communication Tools to develop different techniques and edible Christmas presents.
2018
The funding for the Communication Officer role was secured for another year. The World Autism Awareness event “Autistic Showcase” was held at the Central Library which exhibited the art work of many autistic people, two local libraries held sessions with authors and illustrators for 2 primary schools and a public opening for a question and answer session at the Central Library with Alan Gardner, who is a celebrated garden designer. There were several workshops funded to provide complementary therapy and budgeting information. A new treasurer, Varsha Choudhari, was recruited to the trustee board.
2019
The World Autism Awareness event “Success on the Spectrum” was a question and answer session with 4 autistic people and hosted by the staff at the Central Library. A book reading and story-telling programme with authors was held at local libraries. There was also a photographic exhibition “Curry and Autism” at Out of the Blue, Leith. The aim of the exhibition was to demonstrate that Dads can be caring too. This theme was interpreted with black and white portraits and anonymised quotes which were profound and thought provoking. Produced a short film with a professional company, Bridge 4 Films, about the role of Pasda.
2020
The year started well in March with a short outdoor adventure to Glen Coe for 3 families. Then everything changed and we moved to remote working at home, social groups and events were cancelled. Gradually some of the groups were re-established by video conference technology. Pasda was successful in 3 funding awards, 1) to set up a phone service to give carers the opportunity to talk about their families, 2) transfer the content of the autism workshops to e-modules and 3) funding for core costs. In August a new part time administrator started work but quickly had to move to working at home. A new short video was prepared for the first online Autism Network Scotland conference. The Guide to Services and Resources in Edinburgh and Lothians was edited by Trustee David Langham and printed with funding from the City of Edinburgh Council. Chris Griffiths resigned from board of Trustees.
2021
The year continued with the pandemic restrictions and it was a slow return to meeting in person and groups continued via Zoom. The contract for the administrator ended in August. The first group to meet in person was the Saturday coffee group. We were successful with funding applications 1) Arnold Clark for the walking group, 2) Monument for Good for social groups, 3) Garfield Western, Core Costs. David Langham resigned as a trustee but Isabella Williams and Josie Samuels elected as trustees.
2022
The effects of pandemic was reduced but still around which meant carers were still reluctant to attend meetings. One of the major changes was the twice postponed parliament event for Autism Awareness Week in April, “Autism; A Carers Perspective” sponsored by Edinburgh Western MSP Daniel Johnson. Other social groups, coffee and walking group met in person and built up over the year. We received some funding from East Lothian and City Edinburgh Council to run the groups and meet carers. The Kilt Walk main fund raising event participants were Cath Purdie and Trish Murphy who raised over £1,000. Josie Samuels resigned as a trustee.
2023
We received funding from City of Edinburgh Council and West Lothian Council to provide information and organise social groups. There were 4 donations from Johnston Smillie Trust, Brewin Dolphin Trust, Clockwise and Edinburgh Ladies Curling Club which were very welcome. There were two main events of the year, firstly the installation of the photography exhibition “Curry and Autism” at Haddington and Leith Libraries and secondly, Colin Williamson, gave a presentation about his life experiences recorded as a CD “Success on the Spectrum”. Cath Purdie, reduced her hours but continued in her role as communication officer. John Gannon and Sarah Cornelious were elected as trustees and Isabella Williamson and Varsha Choudhari resigned as trustees. Susan Chambers was awarded a British Empire Medal for services to the autism community and was accepted on behalf of all those people who had contributed to Pasda.
2024
We received funding from Charities Scotland for running social groups otherwise most of the funding came from personal donations. This enabled us to organise series of 3 workshops which were held in West Lothian in Livingston. The contribution to the World Autism Awareness Week was a summary by Colin Williamson of his life and how he was grateful for the support of his parents. Sarah Cornelious resigned as a trustee as she joined us as a new part time member of staff in the role of Carer Liaison. At the AGM Jane Neil-MacLachlan was elected as a trustee and Elaine Thompson volunteered to be membership secretary. There was one trustee resignation as we said thank you to Alice Foster for all her contributions.