2 days ago
- Health
- The Herald Scotland
Individuals in Scotland waiting seven years for autism diagnosis
The 'Experiences of Autism Assessment and Diagnosis in Scotland' report has led to calls on the Scottish Government to address the 'crisis situation' many are facing.
The report highlights difficulties in getting a referral, long waits, a lack of information, and shortages of post-diagnostic support.
A total of 65% of respondents to the survey were autistic adults with 35% comprising of family members and carers of autistic people.
Of those surveyed, nearly two-thirds (62%) of respondents reported a lack of information about the process, including a lack of guidance and support.
A similar number of respondents (64%) said they were not made aware of support services which could be helpful.
Some individuals reported waiting as long as seven years to receive a diagnosis with the experience of 'waiting in limbo' causing considerable stress and anxiety, according to the report.
The survey also raises concerns around inequality based on economic background.
Just over a fifth (21%) of respondents had sought a private diagnosis, with long waiting times and the absence of a local adult assessment pathway cited as key factors
The average cost of a private diagnosis reported was £1540 with the highest reported cost being £4500
A total of 39% of those who had sought a private diagnosis reported that this had caused them financial hardship.
The report was undertaken by Autism Rights Group Highland (ARGH), Autistic Mutual Aid Society Edinburgh (AMASE) and Scottish Ethnic Minority Autistics (SEMA) in partnership with Scottish Autism.
It has led to these organisations calling for a nationwide guarantee regarding timely access to assessments, an improved experience for people going through the process, and better provision of post-diagnostic support.
The organisations have said the Scottish Government should introduce a national neurodevelopmental assessment guarantee, meaning any adult in Scotland can access an assessment pathway should they need to. Dr Joe Long, Director of Practice & Innovation at Scottish Autism. (Image: Jenny Peachey)
Dr Joe Long, Director of Practice & Innovation at Scottish Autism said: 'This report shows very clearly that pathways for autism assessment and diagnosis are highly inconsistent across Scotland, and too often fail the people they are meant to serve - leaving individuals and families stranded without proper information and support.
'In this survey autistic people and their families share powerful testimony about the anxiety of long waits without communication from services; about the sacrifices they have made to seek a private diagnosis when statutory services had let them down; and about being left without proper support to understand their needs once diagnosed.
'Our hope is that the voices of those people who have been let down by the system can be listened to and their experiences recognised in improving assessment pathways in Scotland.'
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Fergus Murray, Chair of AMASE said: 'This report highlights the crisis situation many are facing. Waiting lists are often absurdly long, where pathways to diagnosis exist at all. It's vital to recognise the implications of inaccessible or non-existent diagnostic pathways for neurodivergent people, their families and wider society.
'The rate of mental health issues and trauma amongst undiagnosed autistic people is appallingly high. Diagnosis can empower and validate people to seek others with similar experiences, improve self-awareness and gain a sense of identity and acceptance. This is critical for positive outcomes: Diagnosis is not just something that is nice to have. Without it, many face dire struggles in isolation.'
SEMA, Scotland's only autistic minority ethnic-led organisation, has also raised concerns around the lack of data around those from minority communities.
Sofia Farzana, Co-Director of Scottish Ethnic Minority Autistics (SEMA)
'We welcome the research into the experiences of autism assessments and hope that this highlights the difficulties faced by Autistics in Scotland. The overwhelming majority of participants were of white background which doesn't accurately represent Scottish Autistics. If half found it difficult to access diagnosis, and they were all white except a few, then what of the people who face racial barriers?
'At the time SEMA was only just set up, something that was needed decades ago. Acknowledging that Autistic people are present in all ethnic communities has come very late in terms of policy and practice, but we intend to use the findings of this report to amplify the need for improved accessibility for assessment and support that is culturally competent and free of bias and discrimination.'
The findings of the survey also come as there have been recent closures of adult assessment pathways in Aberdeenshire and Forth Valley.
Kabie Brook, Chair of Autism Rights Group Highland (ARGH): 'The current waiting times for autism assessment in Scotland are unacceptable. Waiting for many years impacts upon people's mental health and affects all aspects of their lives as they feel in limbo. Those who can may turn to private assessment providers - going into debt and facing financial hardship as a result.
'If a child, who may have been waiting many years, ages out of children's services they will then go to the bottom of the adult waiting list, this is no way for NHS Scotland to behave.
'This report and our call to action is us as a collective saying 'enough is enough'; we cannot continue with things the way that they are. We cannot continue to cause harm.'
There have also been reports of cases in Scotland where young people awaiting autism assessment and diagnosis have been removed from waiting lists, with waits of several years meaning many will 'age out' before being able to obtain a diagnosis.
However, Ministers have said that accusation children have been removed from CAMHS waiting lists are false.
The Scottish Government has said they are taking action to address long waits for support as minister described the length of time some have to wait as "unacceptable".
The Scottish Government invests £1 million a year through their Adult Autism Support Fund to provide community and support to autistic adults.
In 2024–25, 1,800 autistic people and 470 families received support and 78% of autistic adults have reported improved wellbeing as a result.
Ministers also invested just shy of £250,000 in 24-25 to fund a range of individual projects to improve neurodevelopmental assessment and support for children and young people.
Mental Wellbeing Minister Tom Arthur said: 'Long waits for support are unacceptable and I am determined to ensure people across Scotland receive help to meet their needs at the earliest opportunity. Together with NHS Boards, local authorities and community partners, the Scottish Government is working to improve access to the best possible care.
'Accusations that the Scottish Government has 'removed' children from CAMHS waiting lists are false. CAMHS is only the right service for children and young people experiencing significant mental health problems. It is not the correct service for children and young people seeking a neurodevelopmental assessment, unless they have also have a mental health condition.'
