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The Herald Scotland
25-06-2025
- 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.' READ MORE: NHS 'dying before our eyes' as third of Scots go private Doctor leaders warn GP practices 'on the brink' as demand intensifies 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.'
Edinburgh Live
18-06-2025
- Sport
- Edinburgh Live
West Lothian trio set to take on 720-mile challenge for charities close to their hearts
Our community members are treated to special offers, promotions and adverts from us and our partners. You can check out at any time. More info A West Lothian family trio are set to take on a 24-hour challenge for charities they hold close to their hearts. Graeme Cunningham from Fauldhouse, his dad Colin, 66, and his 11-year-old son Cole, who lives in Bathgate are set to visit the grounds of all 42 SPFL clubs. They will depart from Annan on the 720-mile trip next month. Graeme, 38, a bus driver with Lothian Country and self-confessed 'fitba geek', hopes to raise at least £3,000 to be split equally between baby-loss charity SiMBA, Scottish Autism, and for Cole's team - Bathgate Thistle Community FC. Graeme said: "I've done stuff for SiMBA before, I knew nothing about them until I lost my daughter Rebecca-Rose who was still-born in 2013, and they helped me and my family then. "We were in the Royal in Edinburgh and they told me, and my partner at the time, about memory boxes and the tree of tranquillity they have. We have the wee keepsakes to look back on. I was 24 and looking forward to my first wean arriving, you're a bit naïve going into it and you don't expect anything to go wrong. "It was literally 10 days before her due date. You just don't think of anything like that. 'Cole's football team, I've seen how much it has brought him on and all the other wee boys on with their confidence. It's just a great set-up they have and they put a lot of work and time into the boys and girls there. They are always looking for some help so I thought it would be nice to give back to them. 'The third one is Scottish Autism, my wee sister's oldest daughter, Evie, who is four, has had an autism diagnosis and out of that, it's educated us a bit more. It's helped me, as I had a situation in my job recently where a wee boy was stranded. "I could tell he was autistic because of my niece I knew what to do to help, probably before I wouldn't have known what to do. I'm quite close to my sister and my niece loves me to bits, so I thought it would be nice to give back to them as well.' Graeme, Colin and Cole will leave from Annan Athletic's Galabank Stadium at 3pm on Friday, July 18 and aim to finish their trip on the Saturday in Dingwall before 3pm, kick-off time. 'It's something that's always been on my bucket list to try and go and visit all the stadiums,' Graeme revealed. 'I watch the guy on Footy Adventures and stuff like that, and this 24-hour thing came into my head and I thought I'd try it, then I thought it might be a bit ambitious. 'We've planned it out and if you went through every one and never stopped you can do it in about 18 hours, but we're going to stop and get pictures and I've contacted all of the clubs. Teams like Ross County, Aberdeen and Edinburgh City have all got back to me. It's still a month away so hopefully more will get back to me. 'We'll be leaving Annan to Queen of the South, along to Stranraer and then up the west coast. We'll do the Glasgow teams and central Scotland. With Hamilton moving to Broadwood, we'll do there and then Livingston and Edinburgh, then shoot back to Falkirk, then Fife, Tayside, Aberdeen and the rest. 'I've been to most of the big stadiums but I'm looking forward to some of the smaller ones such as Peterhead, as I've never been there. I've been to Cover Rangers' old stadium but I've never seen the new one.' The online fundraiser can be found at:
Daily Record
18-06-2025
- Sport
- Daily Record
Generation game as family trio from West Lothian set to visit every SPFL club ground in 24 hours
Graeme, Colin, and 11-year-old Cole Cunningham will take on the 720-mile challenge to raise money for three causes Three generations of a family from West Lothian are set to visit the grounds of all 42 SPFL club in a 24-hour challenge. Graeme Cunningham from Fauldhouse, his dad Colin, 66, and his 11-year-old son Cole, who lives in Bathgate will depart from Annan on the 720-mile trip next month to raise money for three worthy causes. Graeme, 38, a bus driver with Lothian Country and self-confessed 'fitba geek', hopes to raise at least £3,000 to be split equally between baby-loss charity SiMBA, Scottish Autism, and for Cole's team - Bathgate Thistle Community FC. All three are close to Graeme's heart, as he explained: 'I've done stuff for SiMBA before, I knew nothing about them until I lost my daughter Rebecca-Rose who was still-born in 2013, and they helped me and my family then. 'We were in the Royal in Edinburgh and they told me, and my partner at the time, about memory boxes and the tree of tranquillity they have. We have the wee keepsakes to look back on. I was 24 and looking forward to my first wean arriving, you're a bit naïve going into it and you don't expect anything to go wrong. "It was literally 10 days before her due date. You just don't think of anything like that. 'Cole's football team, I've seen how much it has brought him on and all the other wee boys on with their confidence. It's just a great set-up they have and they put a lot of work and time into the boys and girls there. They are always looking for some help so I thought it would be nice to give back to them. 'The third one is Scottish Autism, my wee sister's oldest daughter Evie, who is four, has had an autism diagnosis and out of that it's educated us a bit more. It's helped me, as I had a situation in my job recently where a wee boy was stranded. "I could tell he was autistic because of my niece I knew what to do to help, probably before I wouldn't have known what to do. I'm quite close to my sister and my niece loves me to bits, so I thought it would be nice to give back to them as well.' Graeme, Colin and Cole will leave from Annan Athletic's Galabank Stadium at 3pm on Friday, July 18 and aim to finish their trip on the Saturday in Dingwall before 3pm, kick-off time. 'It's something that's always been on my bucket list to try and go and visit all the stadiums,' Graeme revealed. 'I watch the guy on Footy Adventures and stuff like that, and this 24-hour thing came into my head and I thought I'd try it, then I thought it might be a bit ambitious. 'We've planned it out and if you went through every one and never stopped you can do it in about 18 hours, but we're going to stop and get pictures and I've contacted all of the clubs. Teams like Ross County, Aberdeen and Edinburgh City have all got back to me. It's still a month away so hopefully more will get back to me. 'We'll be leaving Annan to Queen of the South, along to Stranraer and then up the west coast. We'll do the Glasgow teams and central Scotland. With Hamilton moving to Broadwood we'll do there and then Livingston and Edinburgh, then shoot back to Falkirk, then Fife, Tayside, Aberdeen and the rest. 'I've been to most of the big stadiums but I'm looking forward to some of the smaller ones such as Peterhead, as I've never been there. I've been to Cover Rangers' old stadium but I've never seen the new one.'
Yahoo
19-02-2025
- Health
- Yahoo
'Significant risk' if autism and ADHD tests cut
Adult autism and ADHD assessments in Aberdeenshire face being halted despite a council report suggesting the move would come with a "significant risk". Council officers will recommend the £200,000 cut at a meeting on Wednesday due to a lack of Scottish government funding. Members of the Integration Joint Board (IJB) - the body which runs health and social care services in the region - are looking to make £17m in savings in the 2025/26 budget. Social Care Minister Maree Todd said it was "disappointing" that local areas were considering cuts to services. Almost 2,000 people are waiting for ADHD and autism assessments in Aberdeenshire. Temporary Scottish government funding has allowed the service to run for the past four years. Officers anticipated this funding would continue but say this has not happened. The report to go before the IJB found cutting the provision will bring "significant risk" as it leave people with "limited other options." It also anticipates that the move will lead to complaints. A future revisiting of the service provision was not ruled out in the report, if funding could be secured. Marion McLaughlin, from Aberdeen, runs a consultancy which trains companies in improving practices and understanding of autism in the workplace. She has set up a petition against the changes and was the only person with autism on the council's workgroup which first brought the assessments to Aberdeenshire. She said: "The cuts would be shockingly ill-informed. "We are dismayed that the integrated impact assessment does not fully reflect the full destructive impact this will have on our community. "I think the council do not understand the negative effects this will have on the lives of people with autism." The charity Scottish Autism has called on the local health and social care partnership to reject the proposals. The charity's Joe Long said support for neurodivergent adults is "highly inconsistent across Scotland." "It may mean that people are forced to seek private assessment if they are able to afford it, or may be directed to mental health services by health professionals instead," he said. "None of this will be beneficial to people seeking a diagnosis, or to the wider health and social care system." More stories from North East Scotland, Orkney and Shetland Listen to news from North East Scotland on BBC Sounds Last month the Scottish government said there had been a "significant increase in referrals" for autism diagnosis, which was putting pressure on an already-stretched NHS. GPs say they are not unwilling to refer patients who would benefit from support - but that the criteria for referrals was very strict. Dr Chris Williams, vice chair of the Royal College of General Practitioners (RCGP) Scotland, previously said it would be helpful if the public was better informed about this criteria - and how there is no treatment or 'cure' for autism, which is not an illness. Asked about the situation in Aberdeenshire, Maree Todd said it was disappointing that local areas were considering "completely withdrawing" neurodevelopmental services. She said: "The Scottish government provided £400,000 to establish the service in Aberdeenshire between 2019-21. If approved by the Scottish Parliament, the 2025-26 Budget will provide a record £21.7bn for health and social care next year. "This includes £16.2bn for health boards - a 3% cash uplift and real terms increase on their baseline funding. It will also deliver record funding of over £15bn for local authorities, a further 4.7% real terms increase." Speaking about autism support more broadly, she said: "Formal diagnosis is not required to access the support provided, and we know that 78% of autistic adults supported have reported improved wellbeing as a result." Other cuts to be discussed at the meeting include a 70% reduction to the in-house Care at Home Service, which could lead to staff being made redundant. 'I realised I had autism when my children were diagnosed' 'My autistic brain defined my haphazard career' Eighteen-year wait for adult autism assessments
