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We have understood for many years that the variation in prevalence of autism is magnified by the use of multiple instruments of assessment in childhood, but it is enormously compounded by the allocation of autistic spectrum placement by a variations in team personnel as well. No party to this procedure is benefitting or gaining much satisfaction from the process, since these integral difficulties do not consistently result in appropriate support, whether this be integration or special services.

What is more, resources allocated to multi-disciplinary assessment of considerable numbers of referrals for childhood assessment, are met with results, which could be considered inconsequential, because most of those pressing hard for a place on the spectrum of autism, really require integration rather than special services. On the other hand, the few core-suffering individuals with autism are left without sufficient resources for the special services they desperately need.

It is, in a way, a retreat from reality. It is direct consequence of Spectrum vagueness and inconclusive assessment that so many families, craving a diagnosis and believing that, somehow, life for their loved ones will be improved by their resulting right to a satisfactory and effective treatment offer, are disappointed both by the spectrum issue and the lack of help afterwards.

The consequence – again, largely unbeknown to the individual in question, who is likely to be little better off after such assessment – is that families are doubly disappointed, frustrated and resentful because of this unsatisfying spectral suggestion, instead of the authoritative diagnosis, which has been encouraged, if not promised, but inevitably unrewarded. The relief from their difficulties, their worries and their exhaustion is unredeemed, and their faith in the system could not be more cruelly denied

Perhaps we can begin to understand the extraordinary stresses thrust upon parents and other family members, above and beyond what they would have endured, had they not been subject to these unresolved expectations. The most serious consequence can be the unwitting production, by omission, of very serious, if not dangerous, psychiatric disorder.
There does arise, on occasion, an individual about whom, whatever the search for positive behavioural characteristics might find, the major distinguishing feature is violence and self-injury.

It cannot be helped that such a dominating characteristic is largely the determining factor in that individual’s history and presentation. Good minded people may see it as lamentable that a person should be known for his violent and self-injurious behaviour before and above any other characteristic.

Is it that the eye of the beholder is biased, lacking in understanding, too critical or just blind to the good parts that are evidenced elsewhere?

Whatever the degree and depth of reflection on this issue, and I have had both the motivation and the opportunity to perform this reflection, the issue is a starkly confronting one of incomprehensible, and seriously concerning, violence and self-injury.

For a young, learning disabled person who may very well have yet to achieve full maturity of personality, the prospects are worrying. Often diagnosed as autistic at a late age, the individual is understood to have behaved in an intermittently violent fashion since the age of 2.

In my experience, there has been a tendency for any seriously violent behaviour in the childhood of the learning disabled, to be met with a diagnosis of autism. It may not help. Such behaviour is not pathognomonic of autism, though it may accompany the diagnosis, and, indeed, may not even be typical of the violence and self-injury that is seen sometimes to occur in people with autism.

Such behaviour, evinced by autistic individuals, does seem to be driven by the combination of anxiety and obsessional compulsive disorder. It is accepted that the obsessive and compulsive issues of these individuals can be particularly harsh and one of the determining, if not the major, factor in their behaviour. The intensity of the expression in violence is driven by the anxiety which is experienced when the demands of the obsessions and compulsions are not being fulfilled.

A better term might be the German “angst”, which implies not just anxiety, but anguish – a distress which is perceived as painful. Such feelings can evoke the expression of violence, against others or self: impulsive, explosive, intense. As such, the observer or carer, can approach some understanding of the derivation of the behaviour, feel empathic and so order environmental and response patterns to minimise deleterious outcomes.

It is further to be observed that where such behaviour is determined by the extent of arousal distorting an individual’s mental state, and as such represents an initial psychophysiological causation, the person can adapt to this driver by initiating the behaviour as a result of learning of the benefits that such aggression can bring. So-called secondary gain.

The problems of excessive reliance on secondary gain to meet a series of environmental demands is that the stimulus to setting off this train of aggression can become so reduced in its relevance to what is going on, that the consequent violence it triggers is completely out of proportion to the event which apparently caused it. The violence is then seen to be whimsical. The aggression is seen to be experienced as a result of a hair trigger temper.

So we see an individual, initially driven by anxiety around OCD, producing, apparently, a spontaneous expression of violence as a result. In learning of its secondary gain in determining successful outcomes, he is inevitably caught up in reducing the threshold of the stimulus, required to set the process off, to such an extent that the behaviour occurs as a result of a whim.

Thus, a young, autistic person, in other respects good mannered, even considerate and well intentioned, if limited in insight and capacity to understand their situation and how it has evolved, is acting in an undoubtedly psychopathic manner to those around them.

Even when the underlying anxiety is largely reduced and the obsessions and compulsions no longer driven by this distress, the triggers, the whims, are sufficient to set off the established train of events leading to injury in carers in pursuit of the secondary gain.

Investigations usually reveal no underlying medical condition to suggest a gross distortion of structure or function of the brain. The condition is a fundamental one of psychic development. It is a primary diagnosis of a psychopathic process that might not yet be complete and may be reversible given the right treatment in safe circumstances at a young age.
I am no behavioural psychologist but I have some understanding that the initial response to this programme will be an increase in violent behaviours which up to the present have always shown success. It is not possible to carry out such a programme without safe seclusion facilities, demanding exceptionally good practice.

I believe my analysis stands up to scrutiny. I successively have shown no underlying medical condition causing this presentation. I conclude the diagnosis of an active psychopathic process in these autistic individuals is irreducible. I have shown that treatment of anxiety driven obsessions and compulsions is largely successful but does not solve the problem of this interpersonal violence. I have pertinent suggestions as to what the next stage of treatment should be, and this undoubtedly requires specialised units and the use of the Mental Health Act.

Families and carers may disapprove of the diagnostic term “autistic psychopathy”. The prevalence is rare, but when met it requires exceptional treatment. If we do not use exceptional terminology, then its recognition may not be adequately communicated. It is unlikely to be accorded such exception by using the term “challenging behaviour”.

Those of us who suffer by producing such conduct, and those of us who suffer as recipients of that conduct, are in need of relief. It is not beyond the boundaries of healthcare to provide it.

The best option though, is not to allow things to get into such a state in the first place.

 

It may be difficult now to deny expecting parents of the time-consuming, though reassuring, examination over the assessment of spectrum designation. I doubt whether this has the specific criteria necessary for diagnosis – and not many childhood designations lead anywhere.

But if such resources were turned instead to the support and treatment of children and young people with autism while still in the family, with the aim of preventing the development of such difficult and dangerous conduct prior to its establishment in adulthood, then it follows that less effort and fewer resources would be required to tackle the considerably more difficult task of reversing the end state of psychopathic conduct.

The problem is “How to reduce the clamour for Spectrum designation?”.

I suggest it is engendered by the common acceptance that autism is something special, inasmuch as it is not understandable, that we are not able to grasp what it is all about, and that it is less of a disease or disability but more of an alternative human condition.
However this humility of the non-sufferers to those who do have it, can be seen to be heavily influenced by the use of language. For instance, it can be said that although people with autism do not have visual problems, they do have problems of recognition, particularly of facial expression. Then, it can be said, that although they may not have an overall cognitive deficit, they often have specific cognition failures and successes. Certainly, while not necessarily having generalised or situation specific anxiety, they almost invariably have anxious foreboding, leading to a need for the preservation of sameness. Again, while not dominated by obsessions, they have always uncompleted tasks and unfinished thoughts. The repetitive behaviours, while perhaps not classic compulsions, can be understood as being perceived as necessary because the result never turns out to be quite the same.

Autism is a bit more understandable using such language, and as such suggests that integration is probably the better option, not segregation. The more we understand, the better we perform.

 

Whatever words we employ to assist our grasp of the underlying mental state, it seems that the “spectrum” is here to stay. It can probably not be removed. It is so universal and so established as to have become an institution in itself. How best can we use this designation without regarding it as an authoritative diagnosis, if for no other reason, than its application is so varied and so readily referred.

Certainly, that a child has difficulties which might be attributable, in part at least, to symptoms of autism should be recognised early – why on earth not! But these difficulties – being overcome – can be followed by social, vocational and, particularly, academic success. At this stage, maintaining (but not coercing) integration is indeed indicated. Assignation to the spectrum may help.

A few children with other serious psychiatric symptoms deserving of specialised intervention – may also have autistic symptomatology. Attention and treatment in such situations may need to be directed, not only at the serious psychiatric disorder, but also at the accompanying spectrum problems. Apart from youngsters who have both severe spectral and severe psychiatric disorder, the spectral diagnosis should indicate levels of service provision and degrees of integration appropriate to the child and family. It should not be considered diagnostic as such – merely indicative and, importantly, requiring diagnostic intervention at the end of childhood.

Certainly, what is needed for diagnosis is a similar functional qualification as learning disability currently requires, ie an assessment regarding maladaptive behaviour. When definitive diagnosis occurs as an adult, there is no point either for the individual or for society, of diagnosing a contented, successful adult making the most of spectral characteristics.

On the other hand, if similar spectral characteristics are ruining someone’s life, then the adult diagnostic protocol could help understanding, insight and affective release. It may also lead to effective interventions of various types.

Indications of recent adult, rigorous diagnostic protocols indicate a significant number of individuals, previously diagnosed as autistic when children, no longer retain the criteria for adult confirmation of the diagnosis.

On the other hand, adults suffering severe social, interpersonal and occupational problems, who have escaped spectral designation as children, may be firmly diagnosed as autistic by those same rigorous adult protocols.

My broad-brush approach is to agree that childhood spectrum designation is indicative, provisional and advisory. That serious psychiatric symptoms, associated with such assessments of autistic symptoms should receive the early intervention and treatment needed and that individuals previously in this spectrum should receive vigorous protocol examination, following childhood, to meet established criteria with a definitive diagnosis, in pursuit of problems of maladaptation. And that this analysis should be similarly available to those with such maladaptation and similar autistic symptomatology who have escaped spectrum placement in childhood.

My worry about the psychopathy is that it is essentially learnt behaviour – escaping behaviour therapy because it is labelled autistic. Though few, as adults, such individuals get, very early, beyond our ability to provide any sort of care which maintains their human rights, they end up in permanent secure care without access to society in any real way, explosive, violent, self-injurious and even suffering psychosis of various types, perhaps due to the isolation and deprivation, which may continue for the rest of their lives.

The profound care issues surrounding such individuals in the social and health systems are exceptionally challenging to psychiatrists and all members of decision-taking and treatment teams. We would do well to recognise the likely prognosis of such children with such seriously disruptive behaviour. Recognising they are on the spectrum is just not enough.

 

Stephen G Read,
4 October 2016.

 

Reflection on “Reflection to the GMC”.

Reflection on “Reflection to the GMC”.

Today, 13th May 2016, nearly 2 years after that Reflection of 29 June 2014, I write a further reflection on those issues on another auspicious occasion. Last night saw the birth of my granddaughter, Florence Fiona, to my eldest son and his wife.

The intervening years have allowed some sort of coming to terms with the behaviour of the Trust and the subsequent involvement of the GMC.

I can see that it could be straightforward, at least in principle, for the investigation of a complaint from a patient, a member of the public, with regard to an alleged injury at the hands of one or more employees of the NHS. The case itself may be exceedingly complex and its investigation demanding, but in principle it involves an allegedly injured party seeking compensation.

The difficulty arises when there is no injured party, no morbid or mortal consequences to an alleged failure to comply with Good Medical Practice. This in itself would not be so difficult to deal with by Trust and GMC were the complaint manifest by a member of the public. The doctor subjected to that complaint could be supported by members of the Trust both in substance and in spirit in surviving the necessary investigatory process without risk to health and well being.

The problem arises when a doctor is similarly accused of such malpractice, without evidence of accompanying morbidity or mortality, by a senior medical practitioner in that Trust who has authority over the that same troubled doctor. The consequence of such a scenario is that the word of the senior must be taken preferentially by all sections of medical and general management within the Trust while the views of the accused are at best ignored and at worst dismissed out of hand. No member of management or of the Trust Board can step out of line, reject the disciplinary demands of the higher status accuser and be seen to support the unfortunate subject of the allegations.

The accused is therefore totally isolated from all support within the organisation and if the attitude and actions of the accuser are in any way vindictive and excessive, the situation the troubled doctor can find themself in can be dire.

When such a situation presents to the GMC, the Council has a duty to support and protect the accused individual if it is to be seen as more than a prosecuting authority against members of the medical profession. The situation can be invidious, with overtones of bullying, harassment, intimidation, isolation and exclusion – and no one in a senior position in the Trust, or even in the GMC perhaps, can raise their head above the parapet in support of the accused because it smacks of disloyalty to a close colleague, the accuser.

Mental health issues and even suicide could be on the cards here for the hapless situation of the accused. Isolated, ostracised, and intimidated – even former friends in management and Trust Board dare not support, sympathise or even contact the individual at the centre of the storm. Hence you can understand why no one from the Board or senior management sent condolences on the death of my daughter Fiona.

I have some understanding here, of human frailty – both mine and of others.

Reflections on referral to GMC

It is early morning on the 29th June 2014. My daughter Fiona would have been 30
today, but died on 10th April this year.

In her final years she witnessed her father, former Professor of Psychiatry, referred to
the GMC for practice outside the Guidelines of Good Medical Practice. This referral
had occurred in September 2012.

The South West Yorkshire Trust had written a letter to the GMC which I could sorely stand to read – even now I have not read it all in one go. The allegations were of a substance designed to provoke the maximum alarm in the GMC without recording any complaints or any morbidity or mortality as a result of the supposed poor practice.

After a 35 year practice in Psychiatry in Learning Disability and with only 2 complaints
during that long period – each of which was resolved without disciplinary actions, the
referral came as a profound shock. What had I done that was so wrong?

The referral itself arose from a request for help I had made to the Drug and
Therapeutics Committee regarding a small number of patients – a few of whom were
taking high dose antipsychotics. I was suspended – yes! suspended. I was cast adrift,
a process known as Exclusion, and prevented speaking to any member of the Trust, or
entering any Trust premises other than a small bare office in a hospital 30 miles from
my home. My computer was shut down, my office raided by managers and any and
every attempt made to humiliate me and ruin my reputation before my peers and all
other staff. An investigation ensued. The 5 cases were examined in a detail unheard
of in the Trust, including a interrogation of myself of 350 written questions. A report
of 48 pages was produced. There was no substantial finding against my practice.
During this time, I appeared before the Interim Order Panel of the GMC. On this first
occasion, the most notable comment was made by the Medical Member of the
Committee who asserted that it was “a matter of differing opinion” and the Trust had
been “heavy handed in suspending me”.

When the Report of the Inquiry was produced, I again attended a hearing of the IOP
and again the committee turned down the request for Restrictions on my Practice.
The GMC had produced its own report, based on further evidence provided by the
Trust, and the Expert Opinion on this evidence was discredited as being from an
expert outwith the subject or the Specialty.

The search began by the GMC to find an expert within the specialty who would
condemn me. They did so and the condemnation came as one particular case alone,
enough perhaps, for a re-referral to the IOP and an application for fitness to practice
conditions.

On the third hearing, the IOP finally gave in and imposed the mildest condition. I was
to discuss practice with a Consultant Colleague every month, and he or she was to
report back to the IOP after 6 and then 12 months.

Although requested to do so, the Trust refused to assist in finding such a mentor.
Indeed it prevented the most appropriate Consultant from doing so by effectively
removing indemnity and isolating him too. It was at this stage that the MPS defence
solicitor threatened to report the Trust Medical Director to the GMC.

No! A mentor was found in the private sector, by myself, and discussions commenced.
It was during these final events, that Fiona died after a short illness. What, perhaps,
hurts most of all is the utter silence and complete indifference to this event shown by
the Executive Management Team and Trust Board.

People I had worked with closely for 15 years during the inception of the organization
and its approval as a Foundation NHS Trust.

I had been Chairman of the Medical Staff Committee for 6 years as the Trust moved
towards and was offered Foundation Trust Status. I had been Associate Medical
Director for Education and Training for 6 years and worked closer with the Medical
Directorate in providing a comprehensive, high standard CPO programme. I had been
appointed as Named Doctor for children by the Trust because of my work with the
Learning Disability Children’s Team in Kirklees. I was also Chairman of the Research
Committee. I had completed a programme of research into risperidone that had
taken 12 years by publishing a third and final trial in violence and self injury in
learning disabled children. The series of 3 clinical trials, one International and two
Investigator Instigated, indicated the Safety and Efficacy of risperidone in treating
these violent and self injurious disorders in the learning disabled and improving the
Quality of Life enjoyed by them in so doing.

I am now at the point where the Trust is liable to refuse to sign off my Appraisal. So
far I have been successfully appraised until this referral to the GMC. I have always
been in Good Standing with the Royal College, including this last year 2013. I have
always produced the CPD points required. I have arranged my training as required.
In discussion with my mentor, it is difficult to explain why the Trust has done what it
has. I have always been hard working and loyal. I have spent the first 15 years of my
Consultancy in West Yorkshire itself, essentially preparing people with a learning
disability in long stay hospitals for relocation in the community by reviewing medical
and psychiatric treatment. I have in this way contributed to the relocation of more
than 800 patients from 4 long stay hospitals which have all subsequently been closed.
The second half of my career has been spent in preventing these and other patients in
the community from going back to similar hospital places in the private sector.

In the light of this incomprehensible behaviour by the Trust, I am in a quandary as to
how I am expected to react. This is where the death of my daughter becomes
relevant and not just a distraction. She was brilliant.

The Trust is concerned with process – managerial process – governance.
I am concerned with brilliance. I have led a brilliant, but minor career in the field I
have chosen.

The Trust is concerned that I am outlying i.e. not totally within their control by the
means of their process or governance protocols. The Trust is scared about indemnity
and scared I might be a rogue: it is fear of litigation which drives them. There is no
trust in the Trust.

I am not. I have published extensively. I have practised in an exemplary fashion. I am
an experienced and effective clinician. I make extensive consultations with carers,
relatives and colleagues.

Interestingly, I have a profoundly and multiply learning disabled daughter, and am carer
myself and fight the carers and parents battles too!

I have worked on the National and even International scene, and despite its budget,
the Trust is an organisation with a limited horizon.

Let us take these issues, then, to the GMC and see that they are not reassured that
there is, here, at the heart of the matter, a failure in communication and that I
remain a dedicated, hard-working, safe clinician, researcher and teacher who has
been inappropriately referred.