First person accounts of what it is like to live with autism necessarily come from people who do not have substantial learning disabilities or communication problems. They provide us with insights into autistic experiences but they unavoidably leave a sense that the picture we are forming is incomplete. This memoir by Tito, a young Indian man, helps us inch nearer the inner world of the otherwise unheard majority – he is significantly disabled and essentially non-verbal, struggles with social interaction and cannot live independently. And yet he has staggering literacy skills. He tells us of his early life and development and especially of the influence of his mother’s extraordinary dedication to ensuring he achieved everything he possibly could in life.
Tito’s writing flips between the first and third person. He describes experiences that are typical of what we know of autism – intolerance of change or of novel environments, which can provoke screaming or withdrawal; great difficulty in social interactions; learning new skills is a formidable challenge. But much of what he says I found challenging to my preconceptions. For example although Lorna Wing (who wrote the foreword to the book) comments on his self-absorption I was struck that he seems aware, at least in retrospect, of the effect he has on other people – his mother’s love and determination which comes coupled with frustration and times of distress, and also how others must see his odd behaviour.
A standard view (cliché?) about autism is that the main problem is an inability to form an understanding of the mental life of others. And yet one of Tito’s main self-reported struggles seems to be to exert control over his own actions. He cannot copy movements. Even when he knows what he wants to do he cannot initiate actions. He comments on all this without it being entirely clear how he feels about it. ”He needed to move on. He needed to write”. But then “The boy continued to flap and to remain mute”.
Tito writes poetry and tells stories. His book The Mind Tree is astounding. And he seems to take some of the playfulness of creativity into his sessions with clinicians and therapists: “He got proud of his worthless worth” and notes that “The boy was too much flattered by the remarkable impact he made on the people who wondered how he possessed such a gift”.
Tito and his mother Soma now live in the USA, and online it is easy to find some scepticism expressed about Soma’s attempts to generalise her approach with Tito to a more universally applicable therapeutic approach. It would be a shame if contention there detracted from this remarkable book – the story that Tito has to tell and the creative ability he has to show us.
In the last 50 years the prison population in the USA has swollen from about 196,000 to nearly 2.5 million – a twelve-fold increase and 30 times the prison population of the UK for a population about five times the size of ours. A further 4+million are paroled or on probation.
Mass incarceration: the real American dream?
This state of affairs is not an accident or an unwished-for unintended consequence of some other aspect of US policy. It has been building for decades and is driven by a complex of inter-related social and political decisions towards action or inaction. Aggressive response to drug-related crime accounts for about 20% of incarcerations. Phenomenal levels of gun ownership increase the likelihood that minor offences like stealing from a shop or getting into a fight turn into armed robbery or (attempted) murder. Privatised incarceration and the associated prison (slave) labour are numerically small but important in lobbying and in their ideological force. Poverty is a barrier to making bail and even more so to getting a competent or interested defence attorney. Important positions in the public legal system are politicised and being tough on crime is an easy electioneering slogan (sound familiar?). Underlying the lot is a poisonous racism that has its roots in slavery and resistance to reconstruction after the Civil War.
His book Just Mercy describes some of the people he and his organisation have represented as they challenge iniquities like sentencing minors to death or to die in prison (life without parole). Winning these battles is an uphill struggle – the USA is the only country in the world to send children as young as 13 to adult prisons and it was only this month that Ohio abolished life-without-parole sentences for children; one of only 24 states to do so. The book should be read by anybody who believes that America is the Land of the Free and a model democracy.
Mental states and coercive states
The chaotic emptying of mental hospitals in the Reagan era pitched thousands of vulnerable adults onto the streets (see eg Decarceration: community treatment and the deviant, Andrew Scull, Polity Press 1984) and exposed them to risk of imprisonment that has never gone away. Stevenson touches on, but does not major on, this aspect of mass incarceration but I was nonetheless struck by a passage in his book which outlines one line used to persuade the justice system towards leniency in their treatment of juveniles. In a book where the arguments are otherwise couched in social, ethical and political terms, comes this explanation for the likelihood of young people becoming involved in crime:
“A rapid and dramatic increase in dopaminergic activity within the socioemotional system around the time of puberty…drives the young adolescent toward increased sensation-seeking and risk taking…This increase in reward-seeking preceded the structural maturation of the cognitive control system.”
Is this how abused and neglected people have to be presented to the US courts to elicit a response other than savagery?
Can Lisa Montgomery have a lasting legacy?
While I was thinking about this (I have just finished Stevenson’s book) the case of Lisa Montgomery made news in the UK. She was one of the victims of Donald Trump’s killing spree as he left office and attracted particular attention because she was female, killing women being seen as especially abhorrent in part I suspect for sentimental reasons, and partly because they are seen more often as damaged victims and less often in the role of (male) heartless psychopath.
Ms Montgomery was convicted of the most dreadful murder – killing a woman who was in advanced pregnancy and undertaking her own Caesarian section to take the baby as hers. Unsurprisingly she was recognized from the beginning to be mentally ill and indeed while awaiting execution she was imprisoned in The Federal Medical Center, Carswell which is a United States federal prison in Fort Worth, Texas for female inmates with special medical and mental health needs.
The basis for a final unsuccessful plea for stay of execution was that she was mentally incompetent, a term pretty much equivalent to lacking mental capacity in the UK. That is, she did not understand in a meaningful way that she was to be executed and why. An additional argument was that she was being denied the opportunity to prove that by being denied access to experts who might provide the necessary evidence to the court.
The relevant evidence was presented by her defence team in a petition for writ of habeas corpus. In addition to outlining a history of gross and persistent physical and sexual abuse throughout her early life, the document provides extensive neurological and psychiatric evidence, including reference to MRI and PET scanning of her brain. The various observations and opinions make a bewildering read, offering a snowstorm of diagnoses include depression, psychotic depression, bipolar disorder, psychosis, delusional cycling psychosis, PTSD, complex PTSD and dissociative disorder. All complicated by evidence of “frontal, parietal and temporal or slash limbic lobe dysfunction”, and impaired motor control, cognitive function, attention, language and cerebellar dysfunction and temporal lobe epilepsy.
It is difficult to find a straightforward account of a mental state examination that would convince a sceptical court of her incapacity. She is described at times as showing “…confused thought processes, disengagement, depersonalization, derealization, identity confusion, memory disturbance, and emotional constriction.” At times she was dishevelled and monosyllabic. At other times she reported hearing her mother saying derogatory things to her and saying that God communicated with her through dot-to-dot pictures.
Even a straightforward question about mental capacity (competence) produces a response of opinion rather than clearly stated fact:
“Based on your knowledge of Mrs. Montgomery’s history as well as the reports of counsel regarding her current symptomology, is Mrs. Montgomery able to form a rational understanding of the State’s rationale for her execution as required by Ford v. Wainwright, 477 U.S.399 (1986)?
In my professional opinion, which I hold to a reasonable degree of psychiatric certainty, Lisa Montgomery is unable to rationally understand the government’s rationale for her execution as required by Ford v. Wainwright, 477 U.S.399 (1986). Mrs. Montgomery’s grasp of reality has always been tenuous: medication and the stable, supportive environment of her confinement over the past decade have allowed her to appear psychologically intact, though her baseline perceptions of reality are always distorted due to her brain impairments and trauma history. Mrs. Montgomery’s attorney’s observations—limited though they are—indicate that Mrs. Montgomery is further disconnected from reality, precluding a “rational understanding” of “the State’s rationale for [her] execution.”
Trying to make sense of all this is complicated by the experts’ tendency to drift into quasi-neurological speculation about the origins of her symptoms:
“Traumatized children experience neurochemical, neuroendocrine and neuroanatomical changes in the brain” (Really? Experience?)
“..her neurobiological response to early stress was such a heavy load of anaesthetising, altering neurochemicals that she now just daily lives in that kind of …operating stance,…”
With regard to cerebellar dysfunction these are the symptoms one sees…distractibility, hyperactivity, impulsivity, disinhibition, not being able to control one’s anxiety, irritability, rumination,…obsessive behaviour and dysphoria”
“… the dysfunction of PTSD is that we understand now that the part of the brain that encodes memory is the hippocampus, the larger system than that but the hippocampus is the main structure. If laying down that memory as the amygdala, the part of the brain we talked about [in] the limbic system, is sending fear. So later the memory of the trauma activates the fear,…”
Piecing all this together, the most likely I could come up with was that Ms Montgomery had three main problems with her mental health, in each case exact diagnosis unclear but not relevant for the plea under consideration:-
A long-standing psychotic disorder characterised by mood swings, hallucinations and delusions;
Emotional and interpersonal problems consequent upon severe sexual, physical and emotional abuse in childhood;
Some degree of cognitive impairment consequent upon brain injury sustained during attacks in childhood;
All these almost certainly exacerbated by the abusive nature of her treatment during incarceration.
In truth the only conclusion I could come to in the end was a feeling of despair that her liufe depended upon a procedural argument about whether she understood that the state wanted to kill her.
Lessons for the UK?
Like so much about life in the USA, especially in the Trump era one can be horrified by the inhumanity of it all, but it is difficult to see if there are any messages of relevance to our own policy and practice. I think there are at least four lessons, two relating to public policy and two relating to psychiatric practice especially as it is used to explain and respond to social deviance.
First and foremost, we must step back from the current drift towards demonising the poor and marginalised and especially those from minority ethnic groups. The main cause of mass incarceration is illiberal social policy, not individual badness – let’s not go there.
Second, we should avoid imprisonment if at all possible – including imprisonment of those with significant mental illness, those charged with offences but not convicted, and sans papiers suspected of not having legal status as immigrants or asylum-seekers. Privatised prison services are wrong even at a pragmatic level because profiteers are a distorting influence on public policy.
In relation to psychiatric practice we must be endlessly careful that our formulations do not support such demonising by emphasising individual pathology at the expense of social determinants – the diagnosis of personality disorder being a prime example.
Functional imaging is an interesting development in understanding the brain, but it can’t help us with questions about agency and responsibility. Muddling together neurological and psychological explanations runs the risk of neither being delivered adequately. Brain investigation doesn’t make psychological explanation in such cases more credible, it just muddies the waters.
It is difficult to believe any of this made a difference to poor Ms Montgomery’s fate – a spiteful punitive system was determined to have its way – but perhaps we can make the best of a very bad job by asking how her final sorry end might have been avoided.
Like most people, I suspect, I have had a hazy idea of human trafficking as something to do with women from Eastern Europe being forced into sex work and men being trapped into low-waged agricultural or other jobs. Occasionally stories surface about vulnerable individuals trapped in dire conditions by unscrupulous families, and most recently about the fate of 39 trafficked Vietnamese who died in transit. Prompted by the Many Stories Matter book group in my university, I decided to find out more and have been educating myself as a starter with two books on the subject.
Modern Slavery: A beginner’s guide. Kevin Bales; Zoe Trodd; Alex Kent Williamson. Oneworld Publications 2011
Bales, Trodd and Williamson are academics with long-standing interests in slavery and commitment to its abolition. All three are now based at the University of Nottingham in England. Not surprisingly, their book is a model in presenting the global facts about trafficking and slavery (a distinction helpfully clarified early on) and their diversity in the modern world. The book has something of a US bias because of the origins of the authors, but really doesn’t suffer for that.
Some of the book’s messages are predictable ones: risky environments are made by poverty and the social disruption caused by globalised destruction of rural life and the drift to slum dwelling. Displacement through environmental degradation and war are major contributors. At an individual level exploitation of groups is defined by ethnicity, caste (in India), religion and especially gender. The highest prevalence of slavery in the world turns out to be in India, in the form of coercive/indentured labour and domestic servitude linked to the caste system.
A less familiar finding is the importance of corruption at national government level in tolerating or even actively supporting slavery and trafficking. Sometimes this amounts to active pursuit of policies that enslave – in Burma and China for example. And although poverty makes a ready source of people to prey on, it is affluence that creates a market for trafficked people. It is rich, illiberal and corrupt countries like Japan and Israel that top the lists as recipients of those trafficked for labour or sexual exploitation.
Unlike many books on problems in the modern world, the book ends with an outline of the practical steps that can be taken to tackle slavery – starting with proper data collection and sharing, international and national anti-slavery plans should include education programmes, active law enforcement and funded rehabilitation schemes for survivors. Industry must be held to account – and especially in an interconnected global world industry must look to its own supply chains and ensure they are not supported by slavery (recent revelations about the rag trade in Leicester came to mind while reading this). A corollary of the global scope of the book is that pointers for individual action are a bit less incisive – being alert to spotting victims, raising awareness, pressing businesses on their practices.
This is where my second book comes in – I was looking for something to help me understand more what was going on in my own country, and to think about what I might do about it.
Stolen Lives: Human Trafficking and Slavery in Britain Today. Louise Hulland Sandstone Press 2020
The blurb on her publisher’s page says Louise Hulland has been investigating the plight of victims of modern slavery and human trafficking since 2010, whereas in the book itself Hulland says she started researching for the book when Theresa May was PM, in other words in 2016, and in her final summing-up chapter she says she has spent “six months immersed in the world of ant-trafficking and slavery, speaking to those on the front line…” . In truth that’s how the book reads – as a breathless whistle-stop tour of key informants with little or no deep reading or analytic work behind it. There is to take one example no discussion of the implications of so many faith-based organisations being involved in anti-slavery and anti-trafficking activities.
The tone of the book owes as much to lifestyle writing as it does to research rigour. The presentation consists essentially in a series of interviews apparently transcribed verbatim and introduced by odd personal vignettes. Kathy Betteridge, the Salvation Army’s Director of Anti-Trafficking and Modern Slavery, is petite with short blonde-grey hair and is hugely passionate. Norree Webb, the Army’s First Response co-ordinator, is by contrast warm, calm and seemingly unflappable. Rachel Harper, manager of Helpline is warm and engaging. Andrew Wallis, CEO of Helpline, is tall friendly but intimidatingly intelligent. Caroline Haughey, a barrister with a special interest, is tiny and wears a bright pink jumper; she is warm and incredibly modest. Colin Ward, a DC with Greater Manchester Police’s Modern Slavery Coordination Unit, is tall without being intimidating, calm with a warm northern accent. Apparently he’d clearly seen more than any human would wish to.
Once you get past this stuff there is a reasonable amount (although not 270 pages’ worth) of information about how slavery and trafficking are approached in the UK. Most of it is available without the padding from the Global Slave Index 2018 report on the UK. The Modern Slavery Act 2015 tidied up a messy legal framework and makes prosecution cases easier to pursue, and a National Referral Mechanism provides a framework for identifying victims of modern slavery and ensuring they receive support, but there are formidable barriers to tackling the problem at scale – not least underfunding. Not many people know, I suspect, that the main recipient of Government funding to support victims is the Salvation Army, which in turn contracts work to several partners including other faith-based organisations. The picture that emerges is of groups of dedicated individuals working for statutory bodies and in the third sector, struggling to do the best they can in the face of official indifference and hostility. The hostility comes mainly from racism and from the fact that so many victims are either immigrants without the right papers, or UK nationals who need extensive help from our (much diminished) welfare state.
What can an individual do?
As a former health professional, I thought the best place to start would be in the area of health of victims of trafficking and slavery which is, not surprisingly, terrible. Poor nutrition, physical abuse, sexual abuse, unhygienic living arrangements and inadequate access to primary healthcare contribute to poor physical health. Poor mental health comes from the burden of abuse and neglect that constitutes the defining condition of the people involved, and may be compounded by pre-existing problems that increased initial vulnerability to exploitation.
To get a flavour, I started by sampling the websites of four hospital Trusts (two acute, two mental health) and two large CCGs. None had a link to a modern slavery statement on its home page and for 5/6 a search on their website using <slavery> or <human trafficking> produced no hits. One acute Trust had a statement about its compliance with the Modern Slavery Act’s requirement for transparency in supply chains. One of the CCGs mentioned that its safeguarding teams were helping local NHS staff to recognize and respond to people who were at risk or had been trafficked or enslaved. One Trust’s maternity service had a nice page about maternity care for refugees and asylum seekers, but none of the sites indicated specific services, or even specific individuals to contact, in relation to slavery or human trafficking. I couldn’t find anything relevant in a search of the RCPsych website.
Part of the problem here is one of scale. The Global Slavery Index (an excellent site well worth a visit) estimates that there are 136,000 people in modern slavery in the UK, about 2/1000 of the population. If we assume that half are in or around London, my back-of-an-envelope calculation puts anything from 500 to1000 in Leeds where I live, or about 1/10 of 1% of the population. Every one of those people needs help but put against the scale of problems being dealt with routinely by our under-resourced health and social services it is easy to see why slavery doesn’t get top billing. At the same time, it is unclear what exactly is the need of services and whether it is specific or can be subsumed within other services designed to support the traumatised and exploited. There are barriers to presentation, personal and imposed by circumstances, which add to difficulties in planning a ground-up response.
Regardless, what makes work in slavery and trafficking different is the involvement of organised crime and the concomitant need for liaison with other agencies, good record-keeping and reporting. There is nothing about the current UK government that inspires confidence in the likelihood of effective action. Perhaps a small step in the right direction would be for all Trusts to identify a liaison clinician with responsibility for advising about and overseeing services and liaison with relevant statutory and 3rd sector organisations, as has been recommended to improve healthcare for people with a learning disability.
I read this collection of essays by Esmé Weijun Wang (Penguin, 2019) in our work-based book club Many Stories Matter, organised by my work colleague Helen Coop to encourage discussion about equality and diversity. These are my own notes.
Wang has a diagnosis of schizo-affective disorder and what is presented is her account of living with that diagnosis. The book’s opening two-word sentence , “Schizophrenia terrifies”, is not encouraging. The second paragraph begins “People speak of schizophrenics as though they were dead without being dead…” and goes on to cite psychoanalyst Christopher Bollas about “schizophrenic presence” as “being with [a schizophrenic] who has seemingly crossed over from the human world to the non-human environment”. Whatever that means.
A first impression is that, notwithstanding the purple prose, Wang embraces a fairly standard medical-psychiatric view of what is going on. She talks frequently about diagnostic statements by the (several) psychiatrists she has consulted – she has herself worked administering research diagnostic interviews and seems to take them at face value as disease labels. Drug names are scattered through the text. Diagnosis apparently equals prognosis, although Wang points out the disparity between her own “high functioning” and the usually expected course of schizophrenia-like illnesses. On the other hand, there are descriptions of the abusive nature of inpatient treatment and of physical restraint. One of her psychiatrists (Dr M.) is described as suggesting her final diagnosis during an email consultation. And there is a disturbing account of a summer camp at which she and her husband, untrained and largely unsupervised, “looked after” a number of children diagnosed, along with multiple other conditions, as bipolar. All this suggests a more ambivalent relationship with the uncertain practice of psychiatry.
The complexity in this book resides in more than the ambiguity of the author’s position. There is no obvious organising principle, thematic or chronological, and even within chapters it can be difficult to follow the thread. It is surprisingly difficult to gain a detailed picture of what exactly is Wang’s personal experience of her illness and its evolution. Scattered and uncritical references are made to Rosenhan’s discredited On being Sane in Insane Places, to the laughable film A Beautiful Mind, to the opinions of astrologers, and to the Big Pharma sponsored National Alliance on Mental Illness – as if these sources jostle with the more orthodox for explanatory influence. Passing comments about family tensions and a history of repeated self-harm are not expanded upon or integrated into the narrative. Finally there is a long derailment into describing Wang’s pursuit of psychic healing and treatment for chronic Lyme disease as solutions to the failure of conventional psychiatry.
It is difficult to know what to make of all this. Is the narrative style an intentional or performative device, aimed at representing Wang’s experiences? Or a more-or-less unselfconscious demonstration of her current way of remembering it all? Andrew Scull’s review in the Times Literary Supplement was subtitled “A fragmentary memoir of mental unrest” and that seems about right. I was left unclear how much this is a collection of essays about psychosis as opposed to being about the author’s overshadowing attempt to frame her life as somebody with psychosis. Perhaps that is at it should be: the book’s main value is to illustrate one of the dilemmas inherent in living with longstanding mental disorder – the appeal of certainty that resides in psychiatric diagnosis and treatment comes with the limitations of its purview and the disbenefits of its actual practice, while the broader search for personal and cultural meaning does not always yield useful insights or practical solutions.
Lemn Sissay is a British author, poet and broadcaster. His memoir My Name is Why has just been published, and describes his life as a child in the care system from the age of 12.
The book is an important reminder of the damage an
uncaring society does to young people who should be its most cherished members.
It is a moving account by somebody with a special ability to communicate his
personal experience, but it surely can’t be read without it reminding us of a wider
picture of mistreatment: sexual
abuse of children in care and the brutality of Young Offender Institutes are
part of the same story and anybody who has worked in mental health will have
seen its victims.
There’s another equally depressing aspect to the book, and that is the readiness of those around Sissay to attribute his emotional state and behaviour to individual characteristics rather than to try and understand him in his world. At primary school he cops for racial stereotyping as a charming lad, amiable but feckless. At home the friction with his devoutly Christian parents is attributed to his evil nature. In his teens in institutional care his uneasy rebelliousness is treated as the sort of delinquency that sees him guided to the start of what could easily have been a young adult life of crime and detention. With a history of self-harm, drug use and rule-breaking it’s a miracle he didn’t graduate to adult life with a diagnosis of personality disorder.
The degree to which we lean on personal attributes for our understanding
of people is the degree to which we risk a biased neglect of their personal circumstances.
Sissay gives us another reminder; the message can’t be repeated too often.