Autism national post diagnostic support: pilot project

Following the Scottish Government’s Programme for Government commitment in September 2019 - we are working collaboratively with national autism charities and autistic-led organisations to deliver a national autism post diagnostic support service for people diagnosed within the past two years. The desired outcome is that following a diagnosis of autism, individuals, parents and carers living across Scotland are routed to appropriate support. That support will enable individuals to understand, embrace and develop their identity as an autistic person. It will also aim to ensure that parents and carers will have access to information, support and advice to enable them to support their child’s development and personal growth. We also want to make sure that those with a late diagnosis can access support, peers and the autistic community in Scotland should they so choose.

This pilot project was originally to run from December 2020 to May 2021 but it has been extended to the end of March 2023. An independent evaluation report of the pilot has been produced and decisions on the further development of a permanent national service are being made.

Below is a list of the organisations which are participating in the pilot, and the services they will provide as part of it. If you feel that you need this specific support then please contact the organisations directly via their contact details below.

Scottish Autism

Get Set 4 Autism project aims to provide post-diagnostic support to parents and carers of autistic children and young people up to the age of 18 years old across Scotland. The project will promote a greater understanding of autism, improve communication between parents and professionals and ultimately equip parents with the information and practical skills they need to enable them to better support their child. Support is also available to parents and carers who are supporting their children into their adult years within the family home.

Autism Advice Line telephone: 01259 222022

National Autistic Society for Scotland

Delivery of Post Diagnosis Support through social groups and branches online. The provision of social groups - online groups/6 months/fortnightly meetings .  Assisting local branches -  post diagnostic branch meetings monthly and online branches.

Autism Initiatives

The delivery of Late Diagnosis Programmes, consisting of eight remote online Late Diagnostic group (LDG) sessions and two 1:1 sessions to any autistic adult, living in Scotland. The groups will be delivered, from their three One Stop Shops, by their late diagnosed autistic staff.

Autism Understanding Scotland

Autism Understanding Scotland are an autistic-led service offering information about autism for autistic people, their friends and family, professionals, and anyone else interested in autism. Their services include one to one support, training, consultation and maintaining our Autism Information Hub which can be found on their website. Focus is primarily on providing support in Aberdeenshire but they also provide limited support throughout Scotland. They provide the following services:

Autism Information Hub

The Autism Information Hub is written by autistic autism professionals and offers an insight into what it is like to be autistic, strategies to support yourself as an autistic person, and information about how you can support autistic people around you to grow and develop.  

Autistic Led Training

Delivering a series of training webinars to help Improve understanding and acceptance of autism, which aims to support and provide good quality information to autistic people, families, professionals and the general public. Bespoke 1:1 training to organisations who support autistic people.

1:1 support for families and carers:

Providing pre and post diagnostic support and resources around; what autism is and good strategies to best help and support autistic individuals grow and develop. Covering areas including; sensory issues, autistic communication, employment, coping with crisis points, coping with COVID-19, communication with education and general post diagnosis support.  

1:1 support for autistic people

Providing pre and post diagnostic support in areas around; understanding autism, education, coping with crises, COVID-19, employment, diagnosis and much more. Delivering 1:1 appointments, resources, information and sign posting services.  

Late Diagnosis Group

The group is an eight week programme designed and delivered by autistic staff to help autistic adults who receive a diagnosis in later life understand, adjust to and make sense of their new diagnosis.

Scottish Women’s Autism Network (SWAN)

Scottish Women’s Autism Network (SWAN) run local peer support groups, currently online, covering the areas of Glasgow, Edinburgh, Aberdeen, Highlands and outwith COVID conditions, Dumfries and Galloway.  SWAN run Young Swans (14+) meet-ups; the young people attend with an adult. This is going to launch online very soon and will be available for girls 14+ referred via SWAN in Scotland and Studio III in Scotland, Birmingham and Belfast. 

SWAN run an online ‘private membership’ peer-support forum for autistic women based in Scotland which currently has just under 400 members. 

SWAN run regular mental health and wellbeing webinars on a range of topics and with ‘guest’ specialists and experts in their fields; they offer 1-1 counselling.

SWAN are currently running an employment project, supporting, mentoring and catching autistic women and offering support and training to employers to create a more inclusive working environment.

SWAN advise and signpost families of autistic girls and women. SWAN support women seeking or undergoing a diagnostic assessment.

Contact:  email:info@swanscotland.org

Autism Rights Group Highland (ARGH)

Autism Rights Group Highland (ARGH) is an online group for autistic adults (18+) who have received a diagnosis within the last two years – ‘Welcome to the Autistic community’.  The course will consist of 6 weekly sessions followed by 4 monthly sessions (10 sessions of 2 hours in total). Online group for parents of autistic children – ‘Autism – what does it mean for my child and family?’. ARGH will be working with an ARGH member who has vast experience of working in the third sector with disability charities. Both available across Scotland.

All material for the course is written by autistic adults and sessions will be delivered and facilitated by autistic adults.

Autistic Mutual Aid Society Edinburgh (AMASE)

Autistic Mutual Aid Society Edinburgh (AMASE) are an autistic people’s organisation based in Edinburgh. All members are on the autistic spectrum, and their  goal is to help autistic people make each other’s lives better through peer support, advocacy and education.

Providing peer support for adults via online social events - building capacity for organising a range of social opportunities, specifically tied to autistic culture and community in Edinburgh, the Lothians and Fife.