Failure to Correctly Diagnose Autism in Wales is Leading to Self Harm

I called for a Welsh Government Statement on the diagnosis of autism spectrum conditions, following news exposure this week that failure to correctly diagnose autistic children can lead them to self harm.

Raising the matter in this week’s Business Statement, I referred to the case of a constituent’s daughter and asked what interaction the Welsh Government will have with Health Boards and Child and Adolescent Mental Health Service (CAMHS) services to ensure that this sort of situation doesn’t keep occurring.

I said:

“Only today, I received a letter from Betsi Cadwaladr University Local Health Board regarding a constituent’s daughter who had not received the diagnosis of autism through her Child and Adolescent Mental Health Service, but did receive a diagnosis from an independent, experienced doctor – a clinician, who is actually so esteemed in the profession that she contributes to the National Institute for Health and Care Excellence (NICE) Guidelines, is part of the NICE insight community and part of the World Health Organization’s internet-based study group in relation to the diagnostic criteria which is supposed to apply in this country.

“of course, that was a diagnosis that she was on the spectrum, but, worryingly, the letter from the Health Board said that ‘the two assessments do not suggest significant differences, only a difference in label’, and ‘this is not an issue because Flintshire CAMHS do not work exclusively upon a diagnostic label and most of the interventions on offer do not require a specific diagnosis’.

“However, yesterday, across Wales, there was widespread media coverage that failure to correctly diagnose autistic children could lead them to self-harm; of a mother saying that if her daughter had had an earlier Asperger’s syndrome diagnosis it might have saved her much anguish; and of the Swansea University Medical School academic who warned that parents fear children are suffering mental health problems because autism spectrum conditions are not being recognised.

“She said: What is consistent across the research is you are more at a risk, if you have autism, of suicidal thoughts or engaging with self harming behaviours. It’s particularly prominent in females and particularly prominent in females who have remained undiagnosed until adulthood’.

“Given that the new Welsh Government Autism Service that’s being rolled out through the WLGA is going to take some time to reach North Wales and remains non-statutory, and that Paul Davies’s long-awaited and hoped for Autism Bill is going to take some time to pass through the Assembly – hopefully with universal support – we need to know what guidance and what interaction the Welsh Government will have with our Health Boards and CAMHS services to ensure that this sort of situation doesn’t keep occurring.”

In her response, Leader of the House, Jane Hutt AM, said: “Now, this is crucially important – it’s about that single, Wales-wide assessment pathway. Of course, you’re reflecting concerns about how that can be taken forward and be meaningful for children – because it’s a new, single, Wales-wide assessment pathway it will make the system much clearer for families. It does include a 26-week waiting time target for children referred for possible ASD or ADHD. And also, referrals to CAMHS can be made across different areas. So, it is important that parents who have concerns about their children contact their GPs, but the wider strategic arrangements and investment is very clear.”

This is not just about the time taken, although critical, but also failure to correctly diagnose and the often terrible consequences of this.

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