Autism organisations launch diagnosis survey

Scottish Autism has joined forces with three autistic people's organisations (APOs), Autism Rights Group Highland (ARGH), Autistic Mutual Aid Society Edinburgh (AMASE), and Scottish Ethnic Minority Autistics (SEMA), to launch a survey on people's experience of the process of autism assessment and diagnosis in Scotland.

The survey aims to capture information beyond merely the length of time people wait for an assessment or diagnosis, and will seek to understand the quality of people's experience as they go through the process of getting an assessment and obtaining a diagnosis.

Commenting, Scottish Autism's Research & Policy Lead, Joe Long, said: "We constantly hear about the unacceptable waiting times to be assessed for an autism diagnosis. It is vital that this situation improves and that people have timely access to assessment, but it is also important that people experience a positive process, and receive helpful information and support as a result.

"All too often assessment is described as a negative experience, with a lack of post-diagnostic support and signposting.

"By asking people about their experience of assessment, our organisations hope to advocate collectively for improved services and support for individuals and families seeking an autism diagnosis.”

Kabie Brook, of Autism Rights Group Highland, commented: "Waiting times for autism assessment, as well as other forms of neurodivergence are currently unacceptable and causing distress and harm.

"The process needs to be reformed. By gathering information through this survey we can evidence this and work together to improve things."

Fergus Murray, of Autistic Mutual Aid Society Edinburgh, added: "We believe that how someone is assessed as autistic is almost as important as whether they are.

"There is significant evidence that how autism is talked about can have a profound impact on autistic people's self-image and wellbeing, but we don't yet know how that plays out in different diagnostic pathways across Scotland."

Laura Bilton, of Scottish Ethnic Minority Autistics, said: "We are happy to work with other APOs and Scottish Autism to learn more about the diagnosis experiences of autistic people; especially Black, Asian and Minority Ethnic autistic people who can experience more barriers to assessment, diagnosis and support.

"This will hopefully lead to smoother access to services and a workforce who have a better understanding of the needs of Black, Asian and Minority Ethnic autistic people."

The survey can be completed at the following link: https://eu.surveymonkey.com/r/Diagnosis-Survey

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