At the Autism Network Scotland and SWAN Learning Event in April 2015 'Women, Girls and the Autism Spectrum', workshop sessions were held on experiences of autism diagnosis.
A summary of the main points raised is below.
For a more in depth analysis of the discussions around diagnosis, please read a report written by SWAN by clicking here.
What key things contribute to positive experiences of identification, assessment and diagnosis of autism?
- Early intervention
- Healthcare practitioners having an understanding of autism, and how it can present differently in girls and women
- Accessible diagnostic services
- Being listened to, believed, and trusted as an expert
- Someone that can guide you through the process
- Training for education and healthcare practitioners to recognise signs of autism in girls and women
What are the most important things to have access to post-diagnosis/identification?
- Access to reliable and clear information
- Peer support and safe spaces to share experiences (online and in person)
- Support/mentoring for the individual and for the family
- Acceptance and the knowledge that you aren’t alone
- Access to One Stop Shops
- Teachers that are willing to engage and learn (for children/young people)
- Specific support for autistic parents
- Support with transitions
- Being included in a meaningful way
Other discussion points
While the above two questions made up the majority of the workshop discussions, talk also arose around some of the common barriers to diagnosis, the benefits of having a diagnosis, and some specific examples of good practice.
Common barriers to diagnosis:
The point that repeatedly came up here was the lack of knowledge and understanding of autism and its presentation in women/girls of key practitioners in healthcare and education, particularly GPs and mental health professionals. Also mentioned was:
- the lack of resources for diagnostic services
- the opaqueness and lack of support through the diagnosis process
- some local authorities having no diagnostic pathway
- the challenge of obtaining a diagnosis for those without a learning disability
- individuals and parents/carers having to push for recognition and help
Benefits to diagnosis:
Many attendees felt that obtaining a diagnosis could lead to developing self-identity and acceptance, and also meant that support could be accessed. There was also much discussion around how many women feel that they don’t need a formal diagnosis, and that (self-)identification can be enough.
Good practice examples:
Some of the specific examples mentioned in the workshops were Bristol’s diagnostic pathway, Perth Autism Support’s Girls Group, Chill Skills from Relax Kids, the person centred approach taken by Turning Point Scotland, and Number 6 One Stop Shop’s Girls Group and Late Diagnosis Group.