Fonagy report due this week

[WarriorN]

This is the government review into mental health, ADHD and autism for children in the U.K.

The interim report is here:

https://www.gov.uk/government/publications/independent-review-into-mental-health-conditions-adhd-and-autism-interim-report/independent-review-into-mental-health-conditions-adhd-and-autism-interim-report

bbc report here: https://www.bbc.co.uk/news/articles/cqzrz0z4plk1o?app-referrer=deep-link

There is a clip / interview on Facebook from bbc breakfast with him. I’ve attached the screenshot

This is relevant to this board as it sits alongside the Cass review and mirrors how there has been an explosion of teens referred to GD services in the past decade.

I work in send. I see all sides. There’s a fundamental issue with education right now.

Or, as in our experience, you wait three years for a diagnosis and then there's no help available anyway.

There is no version of solving this problem that doesn't involve putting a lot more money into providing support, and unfortunately I don't think it's very likely that an appropriate level of funding will be forthcoming.

This starts earlier than teens. Childhood has changed completely. Children no longer play freely without adult supervision. They can't develop the interpersonal skills involved in solving disagreements. Not allowed to take calculated risks.
They don't walk to school alone. Can't build up the self confidence required to meet challenges. I used to ride my bike around alone or with friends. Not possible now even on country roads.

We've built an environment that works against children thriving and growing into independent adults. We really need to focus on younger children's resilience and confidence.

I'm partly in favour, as we cannot continue to diagnose in those numbers in the absence of postdiagnostic support, and the higher the diagnosis numbers, the less support will be available overall. There is no point spending money on assessing if there is none left for follow up support.

I believe however there is also a fair degree of sexism in the way neurodivergence - or assessments - functions in practice. Maybe because of my personal experience. Men are statistically more likely to act out distress (rather than internalise it as women tend to) in a way that's socially problematic to others. I'm tired being asked to be kind and understanding of males who are unpredictable or aggressive and who may or may not be autistic or ADHD.

I’m smiling to myself as Fonagy and David Bell were my uni lecturers together a million years ago.

I generally have a lot of time for Fonagy; he does all sorts of interesting work and has been at the coalface of his profession for decades.

An important discussion that highlights the need for better understanding, accurate assessment, and timely support for children and young people. Behind every referral is an individual experience, so improving access to appropriate care should remain the focus.

Unfortunately past experience suggests that it might be 😔

This is an important area for discussion, particularly given the significant rise in ADHD and autism referrals and waiting lists in recent years. The interim review highlights how complex these trends are, with increased service demand alongside uncertainty around underlying prevalence.

I’ve spent some time listening to Naomi Fisher’s podcasts around adhd but also other things. The one on dyslexia was interesting- not least as the interviewee works in the schizophrenia field.

the discussion is wide, balanced but evidence based and informative.

A key theme is that in particular with adhd, it doesn’t necessarily mean “it” is life long. Which has implications for things like drugs and pip. In the past adhd was only a childhood issue. I’m also well aware that some children diagnosed with autism at a very early age and given a lot of SALT support can do so well that they wouldn’t pass an autism diagnosis as adults.

The other issue is that psychiatric diagnoses - which these are - are observed behaviour. As such subjective. ADHD has apparently been long contested and is hard to distinguish between other issues such as early trauma, the impact of DV etc.

wrt conditions such as dyslexia they’re starting to not diagnose this but identify children struggling and use a lot of resources to give early consistent and ongoing intervention. Also tailored to the precise issue they’re having, reading, writing/ spelling and/ or maths. Some children simply need more time and better more visual ways to learn. All are always hyper aware they they can’t and this creates anxiety which is in itself a barrier to learning.

Why are so many teenagers on benefits for ADHD?

https://www.thetimes.com/article/444cad96-8ba7-43d3-861c-00265c84b435?shareToken=9bfb78afd0645ceeba7684f64b007c4a

As a total aside I started reading the chimp paradox week and it’s very clear about sex differences in how “inner chimp” comes out between men and women. It’s also very clear that this is on average and sets out the reasoning very clearly.

Notably the focus on how women become more anxious under pressure and stress and the evolutionary reasoning for this. Talks about fight flight or freeze. Etc

Support is already meant to be needs based, not diagnosis based.

It is interesting seeing the proposed changes to SEND in England which looks to bring it more in line with Scotland where pretty much the only legal route for forcing support is disability discrimination under the Equality Act.

In my experience, ADHD was no considered a disability several years ago, even by those assessing. It shifted 2-3 years ago with an increase in adult assessments. I stepped away from assessments as I felt things are being missed and mislabeled, and I did not want to take part in it.

I listened to Naomi's podcast, and there were some really valid points.

I’m surprised that in the BBC clip Fonagy mentions uncertainty over the future, online comparison, lack of community interaction/belonging and recovery (sleep, exercise) as factors in adolescent poor mental health (all can arise as presenting or exacerbating issues/anxieties) but he makes no reference to early caregiving and parenting. This lays foundations (robust or not) for all children and seems to be the elephant in the room. Most parents try their hardest for their children but issues in adolescence commonly stem from how the child is handled early on, and how s/he sees and experiences the world as a result. Parents need help, support, education and incentives to get it right in the early years.

I work on the health side of this, and these are broadly my concerns too. One of the very best parts of my job, is when we are able to treat a child successfully and see the difference to their confidence, learning, wellbeing, family life, behaviour and emotional regulation. It can be the difference between a child on the brink of expulsion doing well at school, or a family on the edge being able to enjoy quality time together.

We know the problems with overwhelming referrals, but we also know that for most, successful treatment involves stimulant medication combined with non-pharmacological therapies and support. More worryingly, we also know the outcomes for children who don’t get the right support, are far worse as adults in terms of relationships, work, addiction, health and contact with criminal justice.

Kicking the can down the road, might seem to be politically expedient right now, in the face of concerns about the rising welfare bill, but delayed assessments are inevitably going to cost - and cost dear - in future.

I think many families aren't bothered what it's called - and wait years for a label anyway - it's that at present many find unless there's a label there's nothing they can stand on to get help. What is badly needed is help to meet actual need, regardless of what it's called. Families dealing with children so distressed they're harming themselves or other family members, dealing with hours and hours of dysregulation, who can't face going into school any more, or who don't really sleep so the family hasn't slept in years just want help. Not half an hour group meeting or a few anxiety tips, or a suggested parenting course when the parents can parent perfectly well, but actual, proper resources, especially for early years and primary. There is no crisis team in my area that helps with anyone under secondary age.

Completely agree

oh I didn’t know this

but this is simplistic.

the medication doesn’t always work. It causes weight loss and loss of height and can cause extreme anxiety. I’ve seen it work for some children, very well, but not others. Same too with adults. I know to women diagnosed autistic and adhd who found the drugs appalling. Amphetamines “help” a great deal of individuals be more focussed; study drugs are a huge thing and parents have slipped themselves doses of their children’s drugs for a long time. Does that mean they’ve all got ADHD?

The concern is that the diagnosis also creates a tunnel vision which then may discount other factors that might help. OR the meds don’t help and you’re back to square one.

These diagnoses can be ripe for victim blaming (the school system can be so tight and putative that it’s affecting MH severely) or even missing health issues that are causing the inattention.

Fight, freeze or flight states of anxiety causes inattentive children and adults. There’s a huge bank of data on this by a dr in the states, biologically linked to how some children/ adults have more reactive sensory systems than others. It’s roughly 20% of the population and biological in nature. (Dandelion and orchid book/ research.) The children tested who matched the description of orchids couldn’t remember anything of what had happened during an experiment when they had been stressed. These children thrive in the right environment and really don’t in the worst environments. But also can respond the best to CBT/ therapy etc.

Poverty and trauma are a huge driving factors for chronic anxiety.

100% this

I’m aware of some teens who have not met the diagnostic criteria . And then what? What happens for them?

Not all drugs used for adhd are stimulants. For example one widely used drug, guanfacine, is not and does not have an impact on appetite like eg methylphenidate does. It takes a bit of trial and error to find the right drug.

It's meant to be but isn't. By needs led I mean removing the barriers around needing a diagnosis to receive support. It's a common concern raised again and again.

As well, there are some widely held misconceptions and fears about medication, which is successful in most people when the right formulation is found.

I agree with Warrier that anxiety and underlying causes which are often not considered or managed. However again, the mechanism with anxiety and ADHD medication is often misunderstood. For some people who have autistic traits/autism in addition to ADHD, controlling ADHD symptoms can allow autistic features such as anxiety to be more noticeable. Importantly, those symptoms are not caused by medication, they were always there, but less apparent because other traits like impulsivity and hyperactivity are more obvious. Siloed diagnosis, also means an ADHD assessment may not pick up a diagnosis of autism and vice versa. If someone medicated for ADHD is anxious, then their anxiety needs to be supported too.

By needs led they mean in response to difficulties/disabilities experienced not simply based on a diagnosis which may have very broad presentations and levels of support needs.

I’m confused with this concept.

Are you suggesting that the anxiety is then treated with more drugs?

As anxiety is a very common side effect of these drugs.

It is also entirely possible to overcome anxiety with the right tools, teaching, learning, and support.

I also have taught many autistic children who simply aren’t anxious. They’re very autistic but it doesn’t bother them. They might find sounds too loud but simply walk about with fingers in their ears, until handed ear defenders (which shouldn’t be used all the time.) And a couple who only become anxious on adhd medication. (And I’m not completely against meds; I’ve seen it occasionally be utterly life changing. But only occasionally.)

The episode where Naomi discusses the autism diagnosis of the daughter of a woman who is dyslexic, who’s life’s work is around schizophrenia is very interesting.

i wasn’t aware that the discussion with this condition is one of drugs when needed and complete recovery for some. Not a life long diagnosis.

Similarly, her dyslexia has changed, she’s learned some things but can’t spell. So that element is life long. Not the other issues. At the same time, many children diagnosed with dyslexia can overcome it with the right combination of interventions and support. To the point now that programmes such as rwi say to just teach repeatedly in short fun ways to any child who’s just not picking it up. Some LA dyslexia services have closed.

In that episode they discuss what I knew 30 odd years ago, that some autistic children are able to progress so well with the correct interventions and supports that they wouldn’t pass a diagnosis as an adult. Apparently this is now sacrilege. And seems to also be the idea around adhd - in the past it was always a childhood condition.

I find it puzzling that adhd is claimed to be a childhood condition. It may be much more readily apparent in childhood because of being in the unnatural classroom environment ie expected to sit still and take in large quantities of information for long periods of time.

However children don’t grow out of it when they become adults. Hopefully they have learned ways to manage plus move into environments where being adhd isn’t as much as a disability. On the other hand, I’ve known many adults with adhd and ultimately they’re earning less, or move from job to job or end up in less ‘typical’ jobs such as dog grooming or wild animal rescue. Before globalisation and offshoring, people with adhd could find regular, reasonably well paid jobs in factories. It’s my opinion that, thanks to A.I., contemporary workplaces will be even more challenging because of fewer entry level jobs, faster processing of data, and the A.I. will do the more mundane, easier jobs that used to be available to humans.

@ItsPeggyOlson re hypermobility, there’s the https://ehlers-danlos.uk/ org for resources, plus, https://www.redcliffhousepublications.co.uk/product-page/understanding-hypermobile-ehlers-danlos-syndrome-hypermobility-spectrum-disord this book. I’ve not used their services, so this isn’t a full endorsement but another mum i know used the London Hypermobility clinic / Professor Roger Wolman to get a diagnosis and help for their DC. Hypermobility known to be associated with anxiety.