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BABCP Response - NICE Consultation January 2022

The ADHD/ASD Pathways To Where?

Since the millennium, attention deficit hyperactivity disorder (ADHD) and autistic spectrum disorder (ASD) have entered the vernacular. It has become commonplace for concerned parents, teachers and mental health practitioners to place children on ‘pathways’ for these disorders. But what is the evidence that the children arrive and stay at, a better place?  There are often alternative pre-millenium descriptions of the child’s difficulties,  that were, at least in principle, the gateway to an evidence-based treatment. For example were child non-compliance was a major issue there were Group Parent Training Programmes Scott (2015). There were also cognitive-behavioural interventions for anxiety and depression. Reviewing GP records since the millennium, there is a conspicuous absence of fidelity to any evidence-based intervention for children. Instead the records are replete with mental health practitioners conjectures (‘formulations’) about the child being on the autistic spectrum or having ADHD. Yet no evidence of fidelity to any programmes for these ‘disorders’. Whatever the evidence for the efficacy of treatments for ADHD/ASD in randomised controlled trials,  there is no evidence of its’ translation to routine practice. Pragmatically it may be better to concentrate on pre-millenium descriptors, keeping treatment relativity simple and straightforward. Importantly not allowing the premature use of ADHD/ASD, descriptors to distract from delivering evidence-based treatments.  This is a specific exemplar of how to address the issue of possible comorbidity in routine practice see Nordgaard et al (2023).Nordgaard, J., Nielsen, K. M., Rasmussen, A. R., & Henriksen, M. G. (2023). Psychiatric comorbidity: A concept in need of a theory. Psychological Medicine, 1-7. (Link)

Since the millennium, attention deficit hyperactivity disorder (ADHD) and autistic spectrum disorder (ASD) have entered the vernacular. It has become commonplace for concerned parents and teachers to place children on ‘pathways’ for these disorder.

The descriptors ADHD/ASD, in fashion since the millennium, refer to traits. This shifts the focus from treatment, with an implicit notion of recovery, to support, an offsetting of the ill-effects of the said traits. Demonstrating achievement of the latter is likely to be highly subjective. It is much less debilitating to have a professional agree that you are having difficulties or are in a ‘state’ than to be told that you have a dysfunctional trait. Keeping treatment simple has been lost since the millennium. This does not rule out the possibility of the use of a trait like descriptor if the ‘simple’ interventions Scott (2009) have not worked, but it means the exercise of great caution and journeying with the person if this territory is entered into.     

See Nordgaard et al (2023) for the interplay of state and trait [Figure. 1. Illustration of state and trait conditions. (a) A state condition with a single episode of a disorder, e.g. major depression. (b) A state condition with recur- ring episodes, e.g. bipolar disorder. (c) A trait condition, e.g. schizophrenia. (d) A trait condition with a comorbid state condition, e.g. personality disorder with a single episode of major depression]. 

 Adults with treatmentrefractory depression and/or longstanding interpersonal difficulties, desperate for a new direction, can experience a sense of relief when the ASD/ADHD labels are put to them. They may find themselves taking new medications without being told that at most only short term benefits  have been documented. They are lured into thinking ‘it’s just the way I am’. Their humanity, freedom to choose is denied . The trait pathology can be underlined by giving a person labelled as having a borderline personality disorder an additional ADHD label as their abrupt mood swings and interpersonal difficulties continue. Whilst this may be welcomed by the individual competing simpler explanations are not considered e.g a child with great difficulty concentrating at school, living in a household with intense parental conflicts hidden from public view. Since the millennium mental health practitioners have failed to utilise the social axis of the biopsychosocial model making explicit excessive use of the psychological axis and implicit excessive use of the biological axis. 

Problems at the starting gate

The problems begin with the many false positives for ASD/ADHD at the start of the pathway. In many cases it will transpire that the child does not have one of these disorders. Which, whilst undoubtedly good news for all, the GP records will show that the child was placed on the pathway. Many years later a potential employer when asked to  chose between candidates with say, the same paper qualifications, may well ‘play safe’ and choose a person who was not put on a pathway. Whilst one rightly complain that they should not engage in such discriminatory behaviour, given their own agenda of a ‘trouble free’ workplace it is perfectly possible that they will. 

Science works by categorisation but distinctions have to be meaningful 

There is no sharp dividing line between having mild ADHD/ASD and  being at the extreme of inattention and struggling to connect with others. The diagnoses are likely less reliable at the mild/normal interface. But a pyramid likely applies to both disorders with many more people with mild disorder as opposed to those with moderate/severe. Thus the group most likely to suffer the effects of misdiagnosis, is likely the largest group. Curiously the NICE Guidelines on ASD recognise this in that they state not only should diagnosis not be made on the sole basis of a psychometric test but there should also be evidence of at least moderate functional impairment. But in practice specialist clinicians operate primarily  on the perceived degree of match between the person and their prototype of a person with ASD. Diagnostic criteria are not central, albeit that adherence is commonly claimed.

When it comes to BPD can a meaningful distinction be made between those with the disorder and those without. The concept of BPD has a long history, but this of itself  is not evidence that the diagnosis is valid. Nevertheless clinicians have for a long time thought that they were describing a meaningful entity with regards to BPD. It can be contended that they were simply ‘deluded’ in this connection but this feels suspiciously close to a ‘pathologising’ of clinicians normal reactions. 

The obscurity of the mechanisms by which these disorders arise

Along the pathway the ADHD/ASD person will encounter a specialist service for these disorders. But this can introduce a confirmation bias, on the alert for a disorder that justifies the agencies existence. This bias may operate non-consciously and may effect the level of attention given to an alternative, often simpler,  explanation of, typically the young person’s behaviour. Documentation may be reviewed that simply confirms the suggested diagnosis. For example reports on family functioning might not be called for, had they been it could become apparent that the child was simply disturbed/agitated by family chaos including minimised drug addiction and domestic violence. One parent may be pursuing the ADHD diagnosis to increase his/her benefits. But for the busy professional there is a disincentive to consider the widest range of information. 

A more recent development that I have noticed is an adult with a longstanding depression or difficulties in relationships being diagnosed as ADHD/ASD. The ‘specialists’ having ruled out significant childhood traumas have then gone on to make these diagnoses. But closer examination of the person with recurrent depression may have revealed that separation anxiety was a feature of early life and a predisposing factor for the depression. It may have also predisposed the person to over-idealise a relationship, over investing and then feeling total abandonment when the relationship does not deliver. Alternative simpler explanations would have been depression and possibly borderline personality disorder.

Does treatment work?

A case for these diagnoses  can be made, Morehead 2023 but it carries dangers. Schools/parents have a right to be informed of these dangers. I have to date found no compelling evidence that medication or psychological treatment returns sufferers from these disorders  to their best functioning and certainly not to have ‘recovered’ in the sense that a member of the public would understand the term. I suspect that there is even less evidence for effectiveness with mild levels of these disorders, the most numerous. Schools/parents have a right to be informed of this. 

In terms of the 2013 Montgomery judgement it is not a matter of what doctors think a patient should be informed about, but what the patient would think are important considerations. The Montgomery Judgement has yet to percolate down to mental health.

At the behest of BABCP and BPS the ranks of those with a mental health orientation in schools is likely to be swelled. But the likelihood is that this will just increase the flood along the pathway.

Dr Mike Scott

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BABCP Response - NICE Consultation January 2022

Organisations Bias Diagnosis and Treatment Pathways

Organisations find the diagnosis they were set up for, creating a label that is passed on without critical re-appraisal – ‘sticky labels’. Resulting oftentimes in inappropriate treatment. Culprits are not only the obviously dedicated services such as those  for Autism Spectrum Disorders (ASD) but missionaries of monopoly training bodies such as EMDR and IAPT. The danger is that the Organisations do not seriously consider a contradictory diagnosis.

 

Recently I saw a 14 year old, two years ago a panel decided that he met criteria for ASD. No individual clinician in the ASD pathway had been definitive about an ASD diagnosis, and the possibility had only been raised when he was aged 11. His social communication was in fact good, interrupting mum appropriately in the Consultation. He clearly had behavioural problems, but there had been no consideration of a possible alternative DSM-5 diagnosis of ‘conduct  disorder with limited prosocial emotions’, instead the Panel concluded ‘will need to be taught social skills methods which suit his ASD needs’ but this has never happened in the intervening 2 years. When Panel decisions are made there is a need to be wary as they make riskier decisions (groupthink). His GP has now suggested that he be guided to a general counselling service for adolescence. No chance it seems of CBT appropriate to his and/or his mum’s needs!

In similar fashion EMDR therapists find PTSD everywhere and IAPT finds a mix of anxiety and depression ubiquitous resulting in poorly targetted treatment.

Dr Mike Scott