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Collaborative practices to improve mental health for autistic children and their families

By Maria A Thomas, on 16 December 2019

On the 21st and 22nd October 2019, Dr Georgia Pavlopoulou and other experts in the field of autism delivered a two day course on ‘Improving Access to Psychological Services (IAPT) for Autistic Children and Young People’ at the Anna Freud Centre. This short IAPT course was funded by Health Education England to help practitioners to understand the barriers experienced by autistic CYP in accessing IAPT services and share examples of good practice and to develop innovative approaches of working with, rather than on or for, autistic CYP.

A key aim of the training is to support practitioners in their role to improve the effectiveness of psychological services for autistic children and young people with, and without, a learning disability by embedding the necessary changes required into service culture. The key outcomes of the two days were to challenge the stereotypes practitioners may hold about autism, promote a better understanding of the communication differences between autistic and non-autistic people and what works, as well as understand autistic burnout, meltdown/shutdown and masking in relation to mental health. The course is beneficial to mental health professionals, social workers and nurses working in child and adolescent mental health services (CAMHS), voluntary support/peer groups/third sectors, and charity sectors.

The plan for the two days was co-produced by Dr Georgia Pavlopoulou who leads the IAPT Autism/ Learning Disabilities stream with Ann Memmott, Autistic Autism Trainer, Director at AT-AUTISM and three young people with a diagnosis of autism/learning disability/ADHD who have been service users at CAMHS, and presented talks and group exercises run by national experts including clinical tutors, academics and autistic people and their family members to collaborate on key issues such as trauma, anxiety and depression, and autism.

Georgia Pavlopoulou (Academic co-Lead):

For me it all started with a question that has motivated my work for the past 17 years: how do we move from ‘fixing’ autistic people to shared power and a more democratic approach to mental health support? Autistic people, their parents, carers and clinicians agree that children and young autistic people often do not receive the psychological help they deserve because those trained in delivering evidence based therapies feel inadequately trained in adaptations for those with a diagnosis of Autism and/or Learning Disability diagnoses and those with significant experience of working with these groups are insufficiently trained in evidence-based methods of therapy.

The above has been a dominant theme in my professional and research career and I am delighted that I now have the chance to work with Dr Peter Fuggle, Dr Russell Russ, our Young Champions and other wonderful academic and clinical colleagues across UCL and Anna Freud Centre in order to explore further issues of co-production and co-delivery in mental health when working with neurodivergent populations. The Psychological Therapies for Children and Young People with a diagnosis of Autism and/or Learning Disability curriculum has been developed as part of the Child and Young People Improving Access to Psychological Therapies programme (CYP IAPT). IAPT aims to improve people’s access to psychological therapies and evidence based practice through the NHS and associated agencies.

During the two days of the short course we co-run activities with delegates, our IAPT clinical tutors and autistic experts and shared celebrations and struggles. Through these exercises we hope that practitioners can identify more ways in which their service might improve autistic participation from an IAPT value viewpoint.

Julia Avnon (Clinical Tutor at Anna Freud Centre):

Over the two days we invited autistic people and their families to help us understand that there is still a lot of room for improvement with the intention of stimulating discussion around how we might improve the way we work in the therapy room with neurodivergent population. It’s so important that autistic people’s mental health experiences are told to our trainees if we aim to improve local mental health services so they are aware of stressors, autistic burnout, alexithymia, what makes autistic people happy and how to work with, rather than on or for autistic people to adapt therapy.

Working together, we maximise the chances to find ways to improve the mental health of autistic people working with autistic people, focusing on aspects that matters to them in their preferred ways. That is a key message of this two day course.

Ann Memmott, PGC (Autistic Autism Trainer Co Lead of the Short Course, AT-AUTISM Director):

With a substantial number of autistic children and young people experiencing mental health conditions, the need for up-to-date, authentic training for professionals has never been greater.  This short course, with funding from Health Education England, was very well received. Those present were enabled to collaborate, explore key new materials, and listen to first-hand accounts of what helps and hinders in therapeutic practice around mental health and autism. Unique in its field, this format has given an excellent grounding in the differences and approaches that need to be taken into account for successful outcomes. With a sizeable waiting list for future courses, it is clear that there is a strong need for further provision of the training. A delight to have collaborated on this, and looking forward to further work with all involved.

Quotes from participants:

“There is a need to encourage understanding of non-autistic people and culture rather than teaching how to poorly mimic what one is not – is key strategy to reduce stress in autistic people.” Damian Milton, autistic academic, guest speaker at the event.

“I have witnessed some great interaction with delegates moving around into new groups in bringing new ideas from autistic adult, autistic parent, parent, professional, clinicians and researchers perspective. I was here to today to discuss how we can do things better from a BAME perspective.” Vanessa Bobb, CEO A2Voice, mother of child with autism.

“So grateful for two enriching days. Made me think where is the Autistic person’s voice in the Autism narrative? Mutuality & collaboration not modification. Celebrating difference not focusing on deficit. Now time for reflection and sharing.” R.E, Art therapist.

For more info on the PG IAPT course in Mental Health for Autistic CYP or upcoming short courses, please contact Module Leader: Dr Georgia Pavlopoulou at georgia.pavlopoulou@annafreud.org

Links:

https://www.annafreud.org/training/training-and-conferences-overview/training-at-the-anna-freud-national-centre-for-children-and-families/improving-access-to-psychological-services-iapt-for-autistic-children-and-young-people/

Insight and Psychosis: The next 30 years

By Anthony S David, on 25 October 2019

I published my first paper on the topic of insight in relation to psychosis about 30 years ago in the British Journal of Psychiatry. An anonymous Lancet editorialist commented at the time that studying insight was, “academically nourishing but clinically sterile”. Torn between feeling flattered by the attention and insulted by the judgement, I persisted. Now seems a good time to take stock and look forward to the next 30 years. We can now say that we have some ‘facts’ about insight in psychosis: first that it is possible to measure in ways that are at least as valid and reliable as any other psychopathological phenomenon. Next, that there are some very well replicated associations: poorer insight, worse psychopathology; lower IQ, lower insight; and lower mood, better insight. Finally there is the obvious and clinically relevant relationship between insight and treatment adherence and hence outcome.

The relation between insight and adherence, or rather poor insight and coercive treatment is, naturally, where critics of the insight concept converge. ‘Insight’ they say is mere agreeing with the doctor. But where a patient’s self-appraisal as not being unwell or needing help is at odds with their peers and family, might this not be regarded as a lack of insight? The interface between insight and capacity to decide upon treatment is where current ethical debate is concentrated and is seen most vividly in the ability to a ‘use and weigh’ information, a key criterion for mental capacity used in the Mental Capacity Act (2005) definition. It is hard to see how the benefits and harms of a proposed treatment can be weighed in the balance if you don’t believe you are ill in the first place.

Metacognition is a relatively new area of psychology examining people’s ability to reflect upon their own cognition and appears to be related to insight as used in psychiatry. The cognitive neuroscience of metacognition is beginning to make important contributions to psychopathology. Lack of metacognitive awareness – not reflecting on whether a decision is correct – underpins much thinking in say, depression, while excessive metacognition can inhibit decision making as in obsessive compulsive disorder. The lack of ability to change one’s mind in the light of new evidence is a core feature of delusions. Paradigms that build on advances in metacognitive research and make use of computational modelling also promise much in this regard.

For insight in psychiatry, the metacognitive challenge posed is to reflect on one’s own mental and interpersonal functioning. It involves an attempt to see one’s thinking and behaviour ‘objectively’ as if through another person’s eyes and then comparing it to some representation of mental health. There is just one fundamental question asked in relation to clinical insight (after Aubrey Lewis): do I have an illness and is the Illness mental? It includes the moment-to-moment evaluation of mental activity (e.g., was someone speaking to me or was it my imagination?) as well as more enduring ‘semantic’ evaluations such as whether my beliefs are true and shared by others. Note that while that representation of mental health will be the amalgam of received opinion and experience, there is no judging doctor, as it were, in sight.

Cognitive insight is a new construct put forward by pioneer of cognitive therapy, Aaron (Tim) Beck. It refers to a cognitive style or propensity to question one’s ideas, beliefs and behaviour. One advantage it affords research is that it enables insight to be studied in healthy individuals without confounders such as stigma and the effects of treatment, and thus linked to normal psychological processes. An early area of interest is the relationship between cognitive and clinical insight – which surprisingly, turns about to be rather weak. We still do not know if poor cognitive insight in a vulnerable individual may be a risk factor for later psychosis per se.

Can insight be fostered?

Restoring or improving insight is a worthwhile psychotherapeutic aim.  It should be in the form of acknowledging difficulties as a first step in gaining mastery over them. Then, encouraging openness to taking up an effective treatment for those symptoms that cause distress at least as a start, and not at all the forced acceptance of some abstract illness model. This was the aim of the now retro-sounding ‘Compliance Therapy’ trials back in the 1990s. Talking therapies designed to improve metacognition (Metacognitive Therapy and Metacognitive Training) across a range of mental disorders have been developed and tested in small clinical trials and subjected to meta-analysis – and the results are promising. To some extent the success of all these therapies depends on the closeness of the link between metacognition and insight which, as discussed is itself a topic of ongoing enquiry.

Apart from medication, which if effective at relieving symptoms is correspondingly effective at improving insight – a new area of therapeutic research is neuromodulation. Transcranial direct current stimulation (tDCS) is a simple, safe and non-invasive method for selectively modulating cortical excitability. Of interest, tDCS over the dorso-lateral prefrontal cortex has been reported to significantly increase awareness of errors on attention tasks in the elderly. Also, a pilot study showed that tDCS to same region increased insight in patients with schizophrenia – replication with a control condition is obviously required.

In conclusion, the study of insight has proved to be both academically simulating and clinically fertile. It is a biopsychosocial construct par excellence.  I am looking forward to what new insights the next 30 years will bring.

A fuller version of this blog will be published soon as a comment piece in the British Journal of Psychiatry. *The full comment can be found at https://doi.org/10.1192/bjp.2019.217

 

A.S.David, Director, UCL Institute of Mental Health

October 17th 2019

Further Reading

  1. David AS. Insight and psychosis. Br J Psychiatry 1990; 156: 798-808. https://doi.org/10.1192/bjp.156.6.798
  2. Amador XF, David AS. (Eds). Insight and psychosis: awareness of illness in schizophrenia and related disorders. 2nd edn. Oxford: Oxford University Press, 2004.
  3. Beck AT, Baruch E, Balter JM, Steer RA, Warman DM. A new instrument for measuring insight: the Beck Cognitive Insight Scale. Schizophr Res 2004; 68: 319-329.
  4. Philipp R, Kriston L, Lanio J, Kühne F, Härter M, Moritz S, Meistert R. Effectiveness of metacognitive interventions for mental disorders in adults—A systematic review and meta‐analysis (METACOG). Clin Psychol Psychother 2019; 26: 227– 240. https://doi.org/10.1002/cpp.2345
  5. De Jong S, van Donkersgoed R, Timmerman M, Aan het Rot M, Wunderink L, Arends J, Pijnenborg G. Metacognitive reflection and insight therapy (MERIT) for patients with schizophrenia. Psychological Medicine 2019; 49: 303-313
  6. Harty S, Robertson IH, Miniussi C, Sheehy OC, Devine CA, McCreery S, O’Connell RG. Transcranial direct current stimulation over right dorsolateral prefrontal cortex enhances error awareness in older age. J Neurosci 2010; 34:3646 –3652.

Bose A, Shivakumar V, Narayanaswamy JC, Nawani H, Subramaniam A, Agarwal SM, Chhabra H, Kalmady SV, Venkatasubramanian G. Insight facilitation with add-on tDCS in schizophrenia. Schizophr Res 2014; 156:63-65.


What is mental health?

By Anthony S David, on 13 August 2019

All of a sudden, everyone is talking about mental health. But what does it mean? First of all, is it just a euphemism for mental illness which avoids (yet perpetuates) stigma? Are mental health and mental illness poles on a continuum? And if so, how do you decide when good health passes into ill health?

If we look at general health – physical health – we might learn some useful lessons. In 1948, the World Health Organisation (WHO) defined Health as: “A state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” This was regarded at the time as bold and progressive, perhaps part of the spirit of post war optimism. Now at best, it seems utopian. At worst it implies medicalisation of all aspects of life. A group of international but mostly Dutch public health physicians, researchers, policy makers and educationalists [Huber et al, 2011] have recently proposed that a new definition of health based on “the ability to adapt and to self manage” be considered. Their initiative is driven by the fact that the health challenges of the 21st Century are dominated by chronic conditions and ageing which are inescapable for the majority so should encourage adaptation rather than eradication. Indeed it is a truism that for most people, ageing may not be great but at least it is better than the alternative. Huber and colleagues also suggest that physical, mental and social domains be separated when definitions of health are contemplated.

Another problem with definitions of health which include notions of function is that it depends so much on what resources are available to the individual, in order to for example, overcome or manage disability or adapt to change.

In reviewing definitions of mental health I am struck by how they tend towards the mystical. Returning to the WHO, their 2014 definition of mental health is: “A state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community.” Terms like ‘a sense of coherence’; ‘self actualization’ and ‘mastery’ crop up in other proposed definitions [see Maxwell et al, 2015 for approaches to this issue]. I am minded to call these states ‘bliss’ rather than mere ‘health’. This again merits concern about over-medicalisation. If health (mental or physical) approaches a state of perfection it dooms the rest of us to the status of ill health. Feeling pain – from time to time if predictable and not extreme – is surely healthy. Same for fatigue. Same for anxiety and depression.

As for well-being – another term often bracketed with health and just as slippery – definitions are elusive. It is economists like Richard Layard, rather than mental health professionals, who are most comfortable with ‘well-being’ sometimes simplifying it further to ‘happiness’. Their work has shown that basic needs – food, shelter, safety – are a prerequisite but above that threshold it is a highly subjective phenomenon and moreover, it is highly relative. Our sense of well-being is strongly associated with our social status and wealth relative to others rather than in absolute terms. While we would be foolish to ignore this window into human nature, it provides a problematic basis for a definition of health (or illness) which, as I see it, at least ideally should be somewhat ‘objective’.

My preferred stance is to expand the range of what is regarded as healthy, whether it be physical or mental and restrict what is regarded as unhealthy. It means that the former no longer feels like an unattainable goal but something broader, more recognisable, imperfect, ‘good enough’. This holds back the encroachment of pathology into everyday life thus avoiding iatrogenic illness, expensive unnecessary treatments and fear. However, even if it is agreed that the transition between health and illness occurs way up toward the ill end of the spectrum it still leaves the thorny issue of whether a line should be drawn – creating a category of illness or ill people – and if so, where exactly should it be drawn.

I have argued [David, 2010] that there are dangers in not drawing a line somewhere, while acknowledging that, in the mental health field, this is unlikely to be carving nature at its joints. The main one being that diagnosis becomes not just arbitrary but up for grabs – by Big Pharma, politicians and anyone else. This in turn is likely to lead again to over-medicalization and sometimes discrimination. From a practical point of view, planning health services and doing research are hampered unless the health problem – the diagnosis – is clearly and reliably defined and communicable.

Finally should we be separating mental and physical health? Some would argue that this is hopelessly dualist. Most people agree that our minds arise out of and are entirely dependent on our bodies. There are biological as well as psychological and social elements within all psychiatric disorders and indeed all diseases. The biopsychosocial model is an important guide and underpinning philosophy here [see Bolton and Gillett, 2019]. Let’s stay with dualism and instead of conceiving of a single health-illness dimension, we consider two orthogonal dimensions, like the points on a compass with mental health-to-ill health running from west to east and physical health-to-ill health running north to south. A person is unlikely to feel in good mental health if they are in poor physical health and vice versa. I would imagine most patients would aggregate in the south east quadrant of the graph while I would hope that most of us spend most of our time in the ‘north west’.

Just as ‘Peace’ may be defined as “the absence of war”, so ‘Health’ – contrary to the WHO – may be usefully and simply ascribed to “the absence of disease”. It’s actually not a bad place to start.

 

Tony David, Director, UCL Institute of Mental Health. August 2019

 

 

REFERENCES:

Huber M, Knottnerus JA, Green L, Horst H, Jadad AR, Kromhout D, et al. How should we define health? BMJ 2011; 343 :d4163

Manwell LA, Barbic SP, Roberts K, et al. What is mental health? Evidence towards a new definition from a mixed methods multidisciplinary international survey BMJ Open 2015;5:e007079. doi: 10.1136/bmjopen-2014-007079

David AS. Why we need more debate on whether psychotic symptoms lie on a continuum with normality. Psychol Med 2010, 40: 1935-42.

Bolton D, Gillett G. The Biopsychosocial Model of Health and Disease. Palgrave Pivot, Cham, 2019, 1-145.

UCL Institute of Mental Health has a blog

By Maria A Thomas, on 9 July 2019

Welcome to UCL Institute of Mental Health (IoMH) blog.

Here we will invite guests and IoMH team to contribute their thoughts and research in current mental health topics.

You can find out more about the Institute on our website: https://www.ucl.ac.uk/mental-health/

Watch this space!