Labour MSP slams Scottish Government over autism support

The Herald Scotland

3 days ago

Mr Johnson, who has ADHD, said it feels as though the Scottish Government "want us to disappear" through their response to the report and what he described as a lack of urgency to act on problems highlighted.
His comments come after Scotland's Autism organisations published a major survey report on Wednesday which found that some individuals are waiting over seven years for an autism diagnosis.
It also found that half of respondents (50.65%) said it was hard or very hard to get a referral for an autism assessment, with just over a fifth (21%) saying they had been refused a referral at some point.
Responding to the report, Mr Johnson said: 'This is a really chilling read.
'When people seek a diagnosis that is normally because of crisis, whether that is family crisis. For young people, school refusal. For adults, that could be relationships or work.
'So through these waits, you are prolonging that crisis. I am very concerned about all of this."
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Mr Johnson also said the focus on privatisation in the report was an important point.
Just over a fifth (21%) of survey 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 £1,540 with the highest reported cost being £4,500.
A total of 39% of those who had sought a private diagnosis reported that this had caused them financial hardship.
Mr Johnson said: 'You are essentially saying that neurodevelopmental conditions are now not within the scope of the NHS and it is in essence privatising the provision of that healthcare for those people for whom it is an absolutely essential lifeline and that is unacceptable.'
The Scottish Government has since said long waits for support are "unacceptable" and they are "working to improve access to the best possible care".
In his response to the report, newly-appointed Wellbeing Minister Tom Arthur said accusations that the Scottish Government has 'removed' children from CAMHS waiting lists are false.
However, Mr Johnson has since hit back saying that CAMHS specific waiting lists were not referred to in the report as being the place where children were 'removed' from and people have been removed from waiting lists for referral.
"They have been removed.
"CAMHS may not be the right service, but they haven't specified what is the right service," Mr Johnson told The Herald. "Right now it is impossible, either as a matter of policy or a matter of fact, to get an assessment for autism or ADHD as a child or adult.
"Health boards have either stopped taking referrals or have such long waits they might as well have.
'It is Orwellian [from the Government]. To say it is false, just on a strict measurement, it is a fact."
Last month, John Swinney told parliament that assessment referrals would not be accepted without a co-occurring mental health condition.
Mr Johnson believes his own condition and autism have been neglected by the government.
The MSP told The Herald: 'These conditions very often get described as invisible disabilities.
"Right now it feels like the Scottish Government wants us to disappear because I don't see where we are in their plans at all."
He added: 'Alternative pathways for a diagnosis of autism or ADHD have not been created.
'For new referrals like in big parts of Scotland such as Tayside there is not presently a route to an assessment or diagnosis on the NHS and there are other parts of Scotland where they are not accepting new referrals, such as in Lothian.
'In most of Scotland, the wait time is being measured in decades. I have got constituents who are already on waiting lists who have been told they will be for 17 years.
'That just means it is de facto not available.'
The National Neurodevelopmental Specification for children and young people sets out the standards all children's services should follow to ensure those with neurodevelopmental support needs receive the support they need.
The Scottish Government has said this makes clear that support should be put in place to meet the child or young person's requirements when they need it, rather than be dependent on a formal diagnosis.
However, Mr Johnson argues this does not help those who are unsure about their condition.
The Scottish Labour MSP said: 'The line recently that the government has been using about not needing a diagnosis to access help is again Orwellian.
'You need a diagnosis to know what help you need. You're actually asking people to guess and stumble upon what their condition is.
'It is also wrong.'
The MSP said a broad range of local authority guidelines on additional help access often stipulates a diagnosis is required.
The government's handling of ADHD is also a concern for Mr Johnson.
A Holyrood committee has just launched an inquiry into treatment pathways and support for both ADHD and Autism Spectrum Disorder (ASD).
'For ADHD, medication is a key line of therapy," Mr Johnson said, "That's what the NICE guidelines state. You cannot get medication without a diagnosis and currently on the NHS that requires specialist, secondary care diagnosis from a psychiatrist.
'To say you don't need a diagnosis to access help is just factually incorrect.
'By not providing the therapy or assessment, you are going to cause those comorbid mental health conditions. Unassessed autism and ADHD is a massive cause of mental health problems.
'The Scottish Government are wishing away a problem and pretending they are not causing more issues and I worry about what this means for the mental health of our young people in Scotland.'
The Labour MSP said the Scottish Government must recognise the 'crisis' in support and act urgently.
'They need to recognise the crisis. We need a pathway to assessment and diagnosis for those that need it.
'There's an urgency that's lacking here and that's just going to compound the crisis that so many people will be facing.'
The 'Experiences of Autism Assessment and Diagnosis in Scotland' 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.
These organisations are 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.
They also want the government to introduce a national neurodevelopmental assessment guarantee, meaning any adult in Scotland can access an assessment pathway should they need to.