Neurodivergent children should not be ‘penalised by postcode’, says charity head

Neurodivergent children should not be “penalised for living in a different postcode” when seeking support and diagnosis, an autism charity leader has said.

Dani Cosgrove, chief operating officer for Stronger Together for Autism and Neurodivergence (Stand) called for the national framework to be “consistent across Scotland” when it comes to diagnosing and treating Attention Deficit and Hyperactivity Disorder (ADHD) and Autism Spectrum Disorder (ASD) diagnoses.

Speaking in Holyrood at a Health Committee on Tuesday she said different local areas’ rules surrounding ADHD and ASD diagnosis in Scotland makes it difficult to give parents advice on their children’s options and needs.

She said: “It’s not just that there is variation, the information each area are talking about (with) assessment pathways, (the) support is different and it’s unclear and it’s also lacking the transparency for the children and the parents and carers.

“Parents rely a lot on peer support, that’s how Stand started. This is divided by age, not geography, but it makes it very different for even these people to give each other that peer support when they’re in two different areas and the rules are completely different.

“It’s difficult for even us to give correct advice when we could give a family in East Lothian advice and it’s different for a family in the Highlands.”

Ms Cosgrove said there were things she believed could be done immediately to assist with the concerns. This included routinely publishing waiting list times of the assessments and support from the first concern and continued through assessment and diagnosis.

She has called for the national framework to be “consistent across Scotland” and said children shouldn’t be “penalised for living in a different postcode or even just having a different professional involved in their care”.

The committee heard that the lack of consistency across the country in diagnosing, treatment and support for ADHD and ASD has meant that some areas have different thresholds.

Rob Holland, director of the National Autistic Society Scotland, said he agreed with Ms Cosgrove about the lack of consistency across the country but believes proposals in a new Scottish Government Bill will help.

He said: “There is lack of consistency and transparency out there across the country and different areas apply different processes in order to try and manage demand. That means there are different thresholds, and it’s not very clear often what these thresholds are.

“We believe proposals within the Learning Disability, Autism and Neurodivergence Bill that is being worked on by the Scottish Government will help in this regard.

“In that there is a proposal around local and national strategies to understand the population and how best to support that population which we think will go in some way to bringing consistency.”

The committee shared concerns that in areas where there are no access to sufficient diagnosis and treatment of neurodivergence conditions that patients will enter the “wild west” of private diagnosis out of desperation.

Mark McDonald, media and policy officer for Scottish Autism, said that many were turning to spending thousands for a private diagnosis in areas where diagnosis options are limited.

He said: “In those instances where people find that the door is closed on them as a result of gatekeeping in the process or a lack of opportunity for self-referral, the only two paths left are cope, or seek a private diagnosis.

“We had evidence to the report that we put together based on our survey that people were spending thousands of pounds on private diagnosis and the issue that arises there is that in the wider sphere there is an element of the wild west around some of the private diagnoses that exists sometimes.”

The committee heard that often people would not know if the diagnosis could be accepted by workplaces or schools for support in the same way an NHS diagnosis would.

The committee met as part of an open call for their inquiry into ADHD and ASD pathways and support.

The inquiry seeks to understand why waiting times for diagnosis and management of ADHD and ASD are reportedly long, including the drivers of increasing demand.

It is also seeking to explore solutions to improve capacity of services, referral pathways and support.

Mental wellbeing minister Tom Arthur said: “Diagnosis can be important but should not be a barrier to accessing the help and support that an individual needs.

“While there has been a significant increase in demand, long waits for support are simply unacceptable.

“That’s why we’re investing £2.5 million in the multi-year autistic adult support fund and an additional £500,000 this year to improve access to support for children, young people and families.

“We are taking action to improve support for children and young people with neurodevelopmental needs. Together with Cosla, we have set up a new children and young people’s neurodevelopment taskforce to drive real improvements.”