The BBC News has today posted a summary of a government review, looking at the increased number of people who are diagnosed with neurodiversity - in particular ADHD and Autism.
I have lived experience of this issue, and I want to tell you a few things.
I was diagnosed with Dyslexia whilst at university, but if you looked at my school reports from primary school you’d know now that I had it then. Its not something that developed overtime, its something I coped with, struggled with and then it fell apart at university. Thankfully a tutor spotted the issues and I got diagnosed by the university.
I was diagnosed with ADHD just 2 years ago. I was lucky to select on ‘right to choose’ and it took 6 months to start the real diagnosis/assessments. Another 6 to get through that. But again this was my doctor spotting an issue, not me asking for an assessment. They spotted my struggles and matched it directly to ADHD criteria… but 2 years on from assessment, I havent had CBT, i’ve not had titration… and its not for want of asking.
Now the reporting will tell you, in the words of Wes Streeting when he was health minister, young people were over-diagnosed and "written off".
Wes perhaps was talking off-the-cuff but at least the part about ‘could be written off’ rings bells with me, not because I ever had that, but i saw it again and again as a kid. The struggles a child faced in the 90’s were very much, ‘we know something isn’t right but we dont do tests for it’, meaning I never got diagnosed with dyslexia or adhd back then. Many of my friends had similar issues at high school and struggled to get diagnosed… trust me their parents tried.
But what we did see was a small buy growing number of parents who would pay for their child to get privately tested… the school accepted this and well lets be honest, being from a working-class background where ‘tightening our belts’ wasnt abnormal, neither I nor the majority of school friends could go down that path. NHS didn’t routinely test for this kind of thing, and schools didn’t want to pay for it either.
But those who did get diagnosed either went one of two ways, and this I think is what Wes meant by “written off” - either they went far and got great results because they got great support and tools to help them through coursework and exams … or they flunked it, often appearing to use it as an excuse to be lazy, or not study. Its those who are ‘written off’ but it isn’t their fault.
As many clearly stated in the report, that support after diagnosis is still missing. Take my own story that even as an adult I havent got treatment after 2 years of an ADHD diagnosis.
Kids and Parents have it even worse, schools creaking under budget cuts from 14 years of austerity - councils on the brink of collapse for the same reason and well … lets be honest, Wes didn’t help here either.
For me there are some vital things to take from this report, and No it isn’t that ADHD maybe over-diagnosed - because it isn’t:
One of the most important changes over recent decades has been the increased recognition of ADHD and autism among girls and women. Research suggests that at least part of the historical sex difference reflected lower rates of recognition rather than true differences in prevalence.
The available evidence suggests that the population prevalence of ADHD has remained broadly stable or increased only modestly over recent decades.
Similarly to ADHD, there is little evidence of a substantial change in underlying population prevalence.
There has also been a marked growth in public awareness of neurodevelopmental differences or traits that can occur to varying degrees across the population on a continuum.
This is accompanied by a far richer, more accepting public language for mental health and diversity, shared online and through social media.
Self-identification in general and as neurodiverse in particular, usually based on the self-recognition of traits, is increasingly common.
These are all taken directly from the report.
What I am not saying here is that there hasn’t been an increase in demand over the past 20ish years for assessment/diagnosis - but if the above doesnt account for it, then parents willingness to speak up more about something more socially accepted is.
Another is that most workplaces will accept that you are self-diagnosed, but wont give you any ‘real’ support until you get a formal diagnosis. And many will only if you have a NHS diagnosis.
But my real issue here is that I don’t think this report was bourne of a want to understand the WHY of an increase in demand, but a want to lower the cost of assessment and treatment.
The reason I say this is pretty clearly represented by this BBC report. This is a report that tells us of the huge variance in how much NHS trusts pay for diagnosis services to private companies (such as the one I used on Rright to Choose)… its anywhere from £300 to £3000 … and as the BBC says its not like where you need a knee replacement and there is a set tariff a private company can charge…. nope its the wild west.
Right to choose for ADHD appears to have started around 2014. It was at that point a tariff should have been implemented, but it wasn’t and private companies have enjoyed the freedom ever since. At yours and my own expense…
Each NHS trust is paying anywhere from 20 to 50 million a year… that variation is so big because its down to each trust to sign a contract and not have a tariff to rely on.
For me the solution here isn’t to attack those who have or need a diagnosis. Its to support them, and support the NHS. Use pricing tariffs across the NHS for this and for everything else that is ‘right to choose’ - I dont think its rocket science.
But also support those who are waiting, start giving them support in schools or work earlier. And once they are diagnosed, ensure that treatment arrives quickly, and isn’t at the whim of an NHS budget that can’t decide if it should fund something this year or not.
This is truly a story of a health secretary who didn’t get what it was to be neurodivergent, who used the term “written off” when he meant something more nuanced, and who, instead of looking at the NHS bottom line decided those in need, those who were vulnerable in this area should be made to feel alienated after many years of public awareness efforts.