Autism and dual diagnosis in a psychiatric dystopia

"I ain’t broke ... and you bastards ain’t never gonna break me." (Bitch Planet #3, by writer Kelly Sue DeConnick and artist Valentine De Landro, 2015).
“I ain’t broke … and you bastards ain’t never gonna break me.” (Bitch Planet #3, by writer Kelly Sue DeConnick and artist Valentine De Landro, 2015).

As someone with both an autism spectrum diagnosis and a history of mental illness, I fall into that intersectionality politely called ’dual diagnosis’, although it often feels more like ’falling between two stools’ than eligibility for duplicated supports. I am lucky to have won the postcode lottery and live in Cork City, the base of the only HSE-funded community support service in the country for adults with Asperger syndrome, where I get excellent social and other supports from Aspect, part of the Cork Association for Autism. I am unlucky to live in a country that otherwise has no services whatsoever for autistic adults (post 18 years) and where ’dual diagnosis’ means being shuffled between mental health services (as and when mental health is impacted) and social or disability support services. About 70-80% of people with Asperger syndrome also experience depression, anxiety and emotional difficulties. Suicidal thoughts are common and often difficult to identify. I want to share a particularly difficult recent encounter with psychiatric care that others in a similar position may find helpful to talk about.

Over the past few of decades I have had difficulties with anxiety and depression, especially at stressful times in my life such as (at my lowest) when I experienced a sustained period of workplace bullying and harassment. I have been admitted as a psychiatric in-patient on 5 occasions and have spent somewhere around 6 months in total in psychiatric hospital, including detention in locked wards because I was then “a risk to myself or others”. I have not been admitted since 2008 and the past ten years have been very good and productive for me, although I remain an outpatient with reviews between 2 and 4 times per year.

This year I have also been physically unwell and I had major surgery, with has impacted my drug metabolism, especially psychiatric medication. My most recent psychiatric appointment was difficult and that is what I am going to describe, with the background. There are no identifying characteristics of the medic or clinic, although you will obviously be able to guess if you were present, or know me well, because this is a comment on the appalling state of HSE mental health resourcing and not a comment on any individual. I hope that detailing this encounter with psychiatric support will turn a distressing incident into a teachable moment.

Physical illness

Prometheus bound to a rock has his liver eaten each day only to regenerate each night, in eternal punishment for tricking Zeus (Michel de Marolles, 1655, British Museum).
Prometheus bound to a rock has his liver eaten each day only to regenerate each night, in eternal punishment for tricking Zeus (Michel de Marolles, 1655, British Museum).

I was physically unwell last year (2016), with digestive symptoms and non-specific fatigue and joint pains. I have had IBS all my life, although it was attributed to ’picky eating’, ’neurosis’, ’nervous disposition’ and ’spastic bowel’ until recently, but this was a very specific change in bowel habits which my GP could feel as distension in the terminal part of my bowel. In February of this year my gastroenterologist removed a suspicious polyp from my colon, which turned out to be a Stage I colorectal cancer with an ill-defined border. Within days I had an anterior section to remove part of my colon and an ileostomy (in which the small intestine is diverted to pouch outside the abdomen). After 6 weeks of recuperation and physical therapy I had follow-up surgery to reverse the ileostomy and reconnect the small and large intestines, and then another 6 weeks of physiotherapy and recuperation. This is about the most fortunate outcome in any cancer with a rapid diagnosis at the very earliest stage of malignancy and the outlook is excellent.
NB 1: I urge everyone not to miss regular screening, to react to changes in bowel and other bodily habits, to promote vaccines like HPV that prevent cancer and, above all, don’t be embarrassed to talk about your body and its outputs. It might save your life.
NB 2: Dr Google is not qualified — use health service sites like the
HSE, the NHS, the National Institute for Health and Care Excellence (NICE) or health insurer advice services. Many (most?!) other websites are dangerous to health and peace of mind.

It is worth noting that alexithymia (Fitzgerald, 2006) is commonly associated with autism spectrum diagnoses, as are functional bowel and bladder disorder (where ’functional’ means physical symptoms without any identified pathology). In my own case I have some difficulty in distinguishing between a full bladder and a full bowel, or between bladder and bowel pain, or even whether sensations of ’pain’ are actually strong emotion. Alexithymia confounds diagnosis of physical illness and tends to lend excessive support to psychogenic or hypochondriac explanations of reported ill-health. This confounding applies across mental illness where “Physical illnesses are not facilitated correctly in acute mental health services because people tend to not believe them, or because they attribute physical health problems to their mental health conditions. That, and the person themselves may not recognise their physical health conditions.” (The, October 2017)

Over the summer I felt unwell again and I knew that the colon polyp had not been serious enough to explain the symptoms I had last year. I missed one psychiatric appointment because I became severely dehydrated while I was away in Greece (39°C, fabulous weather and loads of opportunity to indulge my passion photographing insects) and after we returned home I was too ill to get to the day hospital, so I phoned and then wrote in requesting a new appointment. In the meantime my symptoms clarified into the worst pain I have ever experienced in my life, with cholescystitis (gallbladder inflammation) caused by bile duct obstruction with a small gallstone and infection. A diagnosis of cancer has a huge impact and it particularly affects the attitude to subsequent illness, so even though my rational mind knew that I was unlikely to experience a relapse, the fear centres were screaming about the possibility of metastases. The day that I signed the consent for the colectomy in February was also life-changing moment — being told there is a 5% (1 in 20) chance of dying during surgery is a sobering, shocking revelation that everyone is going to die — but not today” (as Doc Martin said).

Four decades on, Susan Sontag’s 1978 essays on “Illness as Metaphor and AIDS and Its Metaphors” remain as relevant and as hard-hitting as when they were first published. Cancer is not simply disease. It is also a highly stigmatized, moralized and a devastatingly loaded social construction. Autism, of course, is the equivalent 21st century metaphor of disconnection, global disruption, climate change and all that is wrong with the modern world (see e.g. Hacking 2010).

The outcome of the gallbladder infection was that I spent a weekend in agony, became severely dehydrated and was admitted to hospital as an emergency. I spent the whole of the last week of September on an intravenous drip, with nil by mouth and continuous antibiotics until the infection was under control and then had surgery to remove the gallbladder. So this was my third abdominal surgery in the year, having never had surgery of any kind before. I have had low plasma sodium levels for the past year with postural hypotension (causing dizziness when standing up) and occasional falls (which adds a bit of danger to my usual dyspraxia); excessive night-time urination that interferes with sleep; frequent mild jaundice (caused by Gilbert syndrome, a usually benign, genetic insufficiency of enzymes that eliminate bilirubin from the bloodstream); and acid reflux. The electrolyte and bilirubin imbalances may be partly caused by psychiatric medication (Lustral and Lyrica) and the liver impairment means that my metabolism eliminates them more slowly, leading to a higher effective dose that people with unimpaired liver function.

Two hospital consultants have reported “On the issue of Stuart’s abdominal pain, I was just wondering if there was a relationship between his use of psychotropic medication and his Gilbert’s syndrome, and as regards the musculoskeietai pain whether his medication might be responsible for some of this, and it may well be worthwhile transferring him onto another medication or indeed discontinuing it altogether” and “I think the tiredness may be partly down to his current medications, he is a poor sleeper, and I think it is unlikely he has significant sleep apnoea or restless legs syndrome.”

Outpatient psychiatric care

I have attended outpatient monitoring in the same city for the past 15 years. My appointments are with SHO trainees in Basic Training following their first year as a medical intern, or Specialist Registrant trainees in Higher Specialty Training and I have only met my consultant psychiatrist once, four years ago, when the post was first filled. SHOs and SRs rotate between placements every 6-12 months and that means I rarely see the same trainee more than once, so every appointment is starting from scratch. Outpatient clinics are run with a large numbers of patients (20-40) called to the same appointment time, with the trainees desperately scrambling to process everyone before the end of the session. They do not have time to read a 15 year history and usually have read nothing more than the cover sheet and notes of the previous appointment.

Trainees have no authority to do anything with resource implications (such as referring to another discipline, or to group or individual therapies), but they are certainly free to modify prescriptions because medication is funded by the public pharmacy budget. In 15 years and around 30-60 appointments with almost as many strangers, almost every one of them has wanted to either try a new medication or to raise the does of my existing medications. Not one of them has suggested reducing doses. Bearing in mind that these are strangers, who have no baseline assessment with which to compare my current symptoms and that they can not have had time to read my past history, there is no scientific rationale for this pressure to prescribe. (The drugs I have been prescribed over the years are listed below, just to show how much of a trainees’ guinea pig I feel).

The [[route to psychiatric specialist after graduation includes 1 Intern year, 1 Foundation year, 2 years of Basic Specialty Training in Psychiatry (as a supervised SHO, rotating every 6 months) and 3 years of Higher Specialist Training (as a supervised Specialist Registrant, rotating every 6-12 months). The youngest person to present to me as a ’psychiatrist’ was an intern, a new graduate from medical school in their first year of employment. This person clearly had no claim, either ethically or legal, to the title of a medical specialist.

Staff commitment and dedication

What follows is highly critical of aspects of my treatment over a few decades and in the immediate past. It is not intended as criticism of the individuals, but of an under-resourced and over-stretched mental health service that cannot hope to deliver competent care, a system which undermines its staff capacity to perform well and over-exposure of poorly trained new doctors to exceptionally difficult circumstances.

I have had wonderful care from many incredibly hard-working and talented people, who have quite literally saved my life on more than one occasion.

The psychiatric service is the most underfunded and poorly resourced part of the HSE and the under-provision should be a source of shame to one of the 10 richest nations in the world (Ireland’s GDP per capita is $69,000, the second richest in the EU and in the company of the richest Gulf states and tax haven islands).

My recent psychiatric assessment

Sometime around 2004 I said one psychiatrist had overstated the efficacy of, and differences between, SSRI and other antidepressant medications*. Several years later I discovered this person had written ’NC’ ("non-compliant") on the cover of my clinical notes, after which every new trainee and consultant was disrespectful and brusque. *(See e.g. Kirsch et al, 2002)
Sometime around 2004 I said one psychiatrist had overstated the efficacy of, and differences between, SSRI and other antidepressant medications*. Several years later I discovered this person had written ’NC’ (“non-compliant”) on the cover of my clinical notes, after which every new trainee and consultant was disrespectful and brusque. *(See e.g. Kirsch et al, 2002)

So I recently attended my outpatient psychiatric follow-up, 5 days after discharge from my third surgery this year, following a week on an IV-drip, with stitches in four fresh surgical wounds and long before my appetite and digestive system had become accustomed to their recent intimate loss of an organ. My biggest concern was the impact of excessive psychiatric medication on my liver and kidney, a significant possibility raised by consultants in the surgical hospital. I was assessed by a trainee psychiatrist who I had never met before, who plainly had not read any part of my psychiatric history and did not even know my primary diagnosis. This trainee stated at the very outset a need to review my medication with a view to “more effective treatment”, although it was not stated why the current treatment might be inadequate. This individual was not registered to practice medicine in Ireland* and does not appear on the public Medical Council Register, and yet this unqualified and ever-changing trainee is the face of the psychiatric service.

(* “By law all doctors have to register with the Medical Council in order to practise, and doctors can only practise independently as specialists if they have specialist registration.” Medical Council)

This person insisted on assessing me from scratch using what sounded very much like the Hamilton Depression Rating Scale, but insisted I answer without any reference to any physical illness. So yes, I have had feelings of hopelessness and helplessness with an illness outside my control and with the unknown future. I have considered how I might die, and whether I would prefer to hasten my death if I had a terminal relapse of cancer. My sleep over the past year or more has been disrupted by bladder and bowel function, especially difficulty going back to sleep accompanied by lean and lonely early morning rumination on the future. It has affected my work and I stopped teaching because I did not have the physical capacity to deal with the amount of administrative interference in my work. Psychic anxiety, irritability and fears? I doubt anyone would not have in my position. Somatic anxiety such as gastrointestinal symptoms, urination frequency and night-time sweats? Apart from anything else, I had an infection and fever, I have no idea if any part of my set of recent symptoms had a mood-related component, and quite frankly I don’t have the energy to care while I am recovering. My weight did change — I gained 7 kg of water for a week, then lost 10 kg within days of discharge from hospital! — and so on through appetite (I was nil-by-mouth for a week) and the rest of this standardised assessment, Without any reference to any physical illness, as the assessor kept insisting with evident frustration. I recorded verbatim some of the things said to me in the pauses during the five occasions this person left the room, three times to “check with the consultant”, so I am confident these represent what was said:

  • While asking about appetite, it dawned on the assessor that I had not taken any medication in the previous week, because I had nil-by-mouth, not even water. I was asked “Why did you fail to take your medications? How can we help you if you don’t tell the truth?”, without any understanding or acceptance that the surgeon had withheld all medication other than intravenous antibiotics and pain relief, because I was unable to digest.
  • In rejecting any information about impaired liver function, the assessor held up a copy of MIMS (the Monthly Index of Medical Specialities, the pharmaceutical prescribing reference guide) and stated “This” (holding up a copy of MIMS) “is The Bible, and it does not say anything about interactions between your drugs and waterworks or liver function.” Using the term ’Bible’ does not offend me, but using argument-by-authority and a faith-based analogy does concern me. This is not evidence-based reasoning.
  • I had my surgery in the same private hospital as my previous surgeries, covered by a family health insurance policy (50% of Irish people have insurance and private hospitals perform 50% of all elective treatment, but only 10% of mental health care). This seemed to annoy the assessor who said I should have attended one of their own (HSE) hospitals, with the possibility of sharing some record of my treatment, and said You have to be honest with us, otherwise we don’t have the facts and cannot act in your best interests.”
  • At each question “Are you tired? Have you experienced any loss of energy? Reduced appetite” the assessor very tersely rejected my answers because “I don’t mean because of your illness, I need to know just in terms of your mood”, which is really hard to answer meaningfully — how can anyone “Talk about just your mood, not about the physical symptoms you said you had”?
  • The questions about “having feelings your life is worth less, or thoughts of harming yourself” and specifically “have you thought about ending your life” only make sense to me at present in terms of my worries of cancer relapse and the knowledge of my own mortality, but seem to have been noted as ’suicidality’.
  • So onto somatic signs of anxiety and ’sweating’ (Question 11 in the Hamilton scale) and again I can’t find any answer that doesn’t cause frustration because the assessor insists that I must answer “not because of your illness! Do you sweat because of your mood?”
  • The assessor did not have any interest in recording that I had stitches in my abdomen and I was taking prescription pain relief following the surgery (including Tramadol, an opioid that interacts with and potentiates common psychiatric drugs).
  • I have an appointment soon to examine possible interstitial cystitis, which has been interfering with my sleep (and is hopefully caused by bile salts, and will now clear up). The assessor stated “There is no such thing as interstitial cystitis. I am a doctor, I know. I will not write down what you said because we cannot trust what our patients say.” Another appeal to authority and the third accusation that I am a dishonest person (they are all underlined above).

In summary, this trainee psychiatrist felt the need to conduct a formalised assessment of a new patient, without the influence of a clinical history, and then to prescribe an appropriate medication for it. During this rigid adherence to formal a assessment this person refused to accept any ’irrelevant’ information, including the advice of the hospital consultants who treated me. I am sure my situation was not suitable for this training exercise and was frustrating for the trainee. However, this person had decided to write a prescription before I even sat down and attempted to hector and bully me into raising the does of both the medications I take (Lyrica, for generalized anxiety disorder, and Lustral, an antidepressant that I was actually prescribed for rigid and repetitive thoughts). I refused, which lead to the first trip to “check with the consultant” (again, argument by authority and faith over evidence), after which I was told that ’the consultant’ agreed this was definitely in my best interests. I refused again and restated the advice from surgical and clinical consultants that these two drugs act differently with compromised liver function and the Lyrica had to be reduced, which lead to the second trip to ’the consultant’. This time they agreed to reduce the Lyrica but “must raise the dose of Lustral to balance it out”, which makes no sense because they do not treat the same symptoms and it is always advised to change one drug at a time, and in tapered reduction. Changing two drugs, without reference to any change in symptoms, is unscientific and not based on any kind of sound observation of the patient. The third trip to “check with the consultant” resulted in a grudging acceptance that I would reduce Lyrica and maintain Lustral at the same rate, against their advice and “the consultant says it is in your best interests. We have to take into account all the benefits, not just any problems you say the drugs are causing you” and another appointment in a month, rather than the usual 3 to 6 months between follow-up appointments.

Mad person versus Professional (deja vu, again)

The blind seer Phineas is tormented by Harpies who steal or defile his food (from "Jason and the Argonauts" (1963), with ground-breaking stop-motion animation by Ray Harryhausen).
The blind seer Phineas is tormented by Harpies who steal or defile his food (from “Jason and the Argonauts” (1963), with ground-breaking stop-motion animation by Ray Harryhausen).

I have been here before, the ignorant patient challenging the medical expert, with the added bonus that I am certifiably mad, with the T-shirt and the bobble-hat. It does not go well when a psychiatric patient challenges or complains about treatment, with medical professionals defensively closing ranks and an obvious credibility gap for the patient whose word “cannot be trusted.”

Informal coercion is a common feature of psychiatric care, unregulated by the systems that record formal behavioural enforcement (restraint, seclusion and sedation). Professionals report both frequent use of and discomfort with informal coercion techniques, which are considered effective but dissonant with good practice.

A few gems (you may have heard or seen a few of these in my lectures or writing) from my few decades with mental health care include:

  • One consultant suggested “Have you considered going back to your own country?”
  • One psychiatric nurse said “You have sinned against the Lord Jesus Christ by destroying a part of his Creation” (following self-harm). The ward manager questioned this person who said “never happened”, and then concluded “it is your word against a staff member and we have a high regard for the integrity of our staff.”
  • One clinician said I remained unwell because “You are choosing to hold onto your negative thoughts.” Others have said “You are sabotaging your own recovery”, “You are not trying” and “You are not wanting to get better”.
  • One said “You have a head full of sewage and we are going to lance it, to get it out of there.”
  • One trainee psychiatrist said “We can’t help you if you don’t promise to obey and trust us, starting with a written apology for not having done so already” — they had prepared a written apology (a bit like forced political confession) for me and a contract of good behaviour, neither of which I signed. I was expelled from the service.
  • I walked out of one assessment when the consultant answered his mobile to discuss detailed dinner instructions with his mother. I was prescribed the highly sedating antipsychotic Chlorpromazine to “manage your agitation”.
  • I was later threatened “If you don’t demonstrate better willingness to try to get better then we will use electro-convulsive therapy (ECT)”
  • The annotation ’NC’ (“non-compliant”) was maliciously written on the front cover of my notes, adversely affecting subsequent treatment for a period of years, at which point a locum consultant psychiatrist questioned and removed the annotation.
  • One clinician said “I don’t think you should be here”, without further explanation.
  • MIMS is described as “The Bible”, indicative of a faith-based approach to drug therapy. One trainee admitted never reading journal articles “because my colleagues are more knowledgeable”, effectively relying on village gossip in clinical practice.
  • A trainee refused to listen to a 2-year-old review study on medication efficacy, saying “If you had anything recent …”
  • One trainee repeatedly asked me “Are you sure you wouldn’t like to go elsewhere, that there isn’t a possible conflict of interest?” This individual did not mention that their supervisor was the boss who had bullied and harassed me in my workplace.
  • At a consultation with a psychiatrist I was told how the service had recently established diagnosis-specific groupings, so that people with similar diagnoses would have social contact with others who have features in common. The patients had reacted very positively and appointments had become calmer, “but,” he said, “… the drugs are just the same.”
  • One trainee prescribed Quetipine, after attempting to convince me I experienced hypnagogic or hypnopompic psychosis. It had a very unpleasant sedating effect and the trainee withdrew it, admitting having experienced this difficulty personally, and glad to have tested another drug out (on me). The adverse effects of Quetiapine include “Hyponatraemia; Postural hypotension; Increased liver enzymes, Liver test abnormalities may occur in up to 30% of patients on long term therapy with quetiapine, and in rare instances with clinically apparent acute liver injury; Insomnia; Fatigue”, the physical symptoms that I already experience. In addition “Quetiapine should be discontinued gradually.”
  • “We learned about the autism spectrum in paediatrics, but your not a … an umm, er… child?”
  • “I see in your notes that it says you were raped as a child — how is that going?”

These comments are not representative of mental health care in Ireland. They were made by psychiatric staff in a number of different settings and are not all from my current treatment service — most are from different people than the one who conducted my recent assessment. They do reflect an attitude, caused and reinforced by limited time and resources, of not attending to a patient’s concerns and template-based treatment without respect for individuality and personal circumstances.

The Hartley breed pharmaceutical laboratory guinea pig.
The Hartley breed pharmaceutical laboratory guinea pig.

During my meanderings through mental health I have been prescribed a wide range of anxiolytic, antidepressant, antipsychotic and hypnotic medications. Many of them have been prescribed off-label, for instance prescribing the antidepressant Lustral for its side-effect of moderating OCD-type behaviours. The medications I have received include Amitriptyline, Anafranil, Anxicalm, Buscopan, Buspar, Clonactil, Dalmane, Diazepam, Efexor, Gamanil, Largactil, Librium, Lithium carbonate, L-Tryptophan, Lustral, Lyrica, Mefanamic acid, Mirtazapine, Mobic, Priadel, Quetiapine, Sertraline, Spasmonal, Stilnoct, Tradol, Tranxene, Venlafaxine, Xanax, Zimovane and Zispin. I do not believe that these frequent changes in medication, and even more frequent changes in dosage, are based on sound observation of my symptom response — especially as I have seen each trainee specialist only once and occasionally twice. There is no test for efficacy, for example nobody has ever taken a blood sample to measure my serum serotonin levels when prescribing a drug theorized to operate by correcting a serotonin deficiency. I do believe that the training element of non-specialist care creates an impetus to assess and prescribe, to tick boxes in a continuous learning process.

(Failed) safeguards

"Then the safeguards failed!" (Bitch Planet #1, by writer Kelly Sue DeConnick and artist Valentine De Landro, 2014).
“Then the safeguards failed!” (Bitch Planet #1, by writer Kelly Sue DeConnick and artist Valentine De Landro, 2014).

I have had chronic borderline hyponatremia (low blood sodium) and postural hypotension (low blood pressure when standing up) with a risk of falling, nocturnal polyuria (excessive urine waking me every night) and daytime fatigue, recurrent episodes of jaundice and acid reflux. These symptoms are worsened by some psychiatric medication and my slow liver metabolism increases the effective dose of most psychiatric medications because they are eliminated from my body more slowly. I have been unable to communicate these to trainees who are unwilling to listen, do not wish to prescribe outside fixed templates and lack any continuity of care.

MIMS, ’the prescriber’s Bible’ of my current mental health care service, contains a number of relevant warnings for my current medications. Lustral is contraindicated in hepatic (liver) impairment, interacts with Tramadol (the pain medication prescribed after my surgery) and has adverse effects that include GI upset, altered appetite, sleep disturbances, somnolence, fatigue, arthralgia, myalgia, postural hypotension, urinary retention, hyponatraemia, pancreatitis and serious liver events. Lyrica interacts with opioid analgesics (Tramadol) and has adverse effects including dizziness, somnolence, sedation, insomnia, disorientation, attention disturbances, impaired coordination and memory, tremor, paraesthesia, hypoaesthesia, GI upset, fatigue, oedema, weight gain, musculoskeletal pain and renal failure.

Irish Pharmaceutical Healthcare Association (IPHA) service Medicines Information Online provides a number of warnings for Lustral (sertraline): contraindications: hyponatraemia, which may occur as a result of treatment with SSRIs or SNRIs including sertraline. In many cases, hyponatraemia appears to be the result of a syndrome of inappropriate antidiuretic hormone secretion (SIADH).” In the case of “Hepatic impairment — Sertraline is extensively metabolised by the liver. A multiple dose pharmacokinetic study in subjects with mild, stable cirrhosis demonstrated a prolonged elimination half life and approximately three-fold greater AUC (the Area Under the plasma drug concentration-time Curve, a measure of the effective does absorbed) and Cmax (peak serum concentration) in comparison to normal subjects. There were no significant differences in plasma protein binding observed between the two groups. The use of sertraline in patients with hepatic disease must be approached with caution. If sertraline is administered to patients with hepatic impairment, a lower or less frequent dose should be considered. Sertraline should not be used in patients with severe hepatic impairment.” “In patients with liver damage, the half life of sertraline is prolonged and AUC is increased three fold”. The Patient Information Leaflet in the packaging advises “If you have liver or kidney problems, please tell your doctor and follow the doctor’s instructions”, “If you have liver disease; your doctor may decide that you should have a lower dose of Lustral”, “If you develop yellow skin and eyes which may mean liver damage”, “Tell your doctor immediately: If you develop yellow skin and eyes which may mean liver damage; If you have low sodium level in your blood, since this can occur as a result of treatment with Lustral.” Side effects are listed as “Dizziness; Diarrhoea; Fatigue; Abdominal pain, vomiting, constipation, upset stomach, gas; Joint pain; Purple spots on skin; Nighttime urination, increase in urination, increase in frequency of urination; Increase in liver enzyme levels, problems with liver function, serious liver function problems, yellow skin and eyes (jaundice).”

Medicines Information Online provides a number of warnings for Lyrica (pregabalin): Contraindications: Reduced lower gastrointestinal tract function — There are postmarketing reports of events related to reduced lower gastrointestinal tract function (e.g. intestinal obstruction, paralytic ileus, constipation) when pregabalin was co-administered with medications that have the potential to produce constipation, such as opioid analgesics (Tramadol). When pregabalin and opioids will be used in combination, measures to prevent constipation may be considered.” It warns that “Dizziness, somnolence, loss of consciousness, confusion and mental impairment — Pregabalin treatment has been associated with dizziness and somnolence, which could increase the occurrence of accidental injury (fall) in the elderly population”. The Patient Information Leaflet advises “Tell your doctor if you have a history of any serious medical conditions, including liver or kidney disease.” Side effects are listed as “Vertigo, problems with balance, fall; Dry mouth, constipation, vomiting, flatulence, diarrhoea, nausea, swollen abdomen; Muscle cramp, joint pain, back pain, pain in limb; Elevated liver enzymes; Urinary disorders; Changes in blood and liver test results (blood creatinine phosphokinase increased, alanine amino, transferase increased, aspartate aminotransferase increased, platelet count decreased, neutropaenia, increase in blood creatinine, decrease in blood potassium); Jaundice (yellowing of the skin and eyes); Liver failure; Hepatitis (inflammation of the liver).”

The safeguards have failed completely, in part due to care from over-stretched and under-trained staff and in part due to the fragmentation of care between autism support services, physical health treatment and mental health treatment. In this particular case it has put me at risk of harm, and I have experienced falls (including broken bones) and imbalances in electrolytes and liver function as a consequence of over-medication.

Conclusions for the future

Bitch Planet (by writer Kelly Sue DeConnick and artist Valentine De Landro) inspired ’NC’ tattoos amongst readers who subverted the slogan applied to "non-compliant" women imprisoned off-plant by a patriarchal society.
Bitch Planet (by writer Kelly Sue DeConnick and artist Valentine De Landro) inspired ’NC’ tattoos amongst readers who subverted the slogan applied to “non-compliant” women imprisoned off-plant by a patriarchal society.

Change is difficult without funding and resource commitments, which has been ignored by successive governments. Mental health care receives about €800 million per year, 6% of the total health care budget. The HSE mental health service is understaffed by approximately 20% and has difficulty recruiting and retaining specialists. More than 100 non-specialists and trainees are performing the duties of specialists without being qualified and it is particularly difficult to recruit psychiatrists (Irish Independent, October 2017). Sinn Féin health spokesperson Louise O’Reilly has said “the present situation was unfair on patients and their families, adding ’it is also extremely unfair on those doctors and consultants who do a fantastic job that they would be put in such a difficult and precarious situation … The numbers made for extremely worrying reading,’ she said.” (the, June 2017). The Irish Medical Council allowed hospitals to hire non-specialists in specialist posts because “the term ’consultant’ is not defined in the Medical Practitioners Act 2007 … However, the IMC emphasised that it was an offence for someone to claim to be a specialist if they were not on the Specialist Register.” (Irish Medical Times, August 2017)

These are some suggestions for interacting with autistic people in mental health care, based on my experiences. Many of these suggestions are environmental and do not require increased expenditure:

  • Predictability. It is disconcerting to have changes of doctor, room, routine, time etc. Minimizing the number of changes of doctor would help (because rooms etc tend to go with the doctor).
  • Written material. No matter what level of verbal skill a person appears to have, nobody with autism takes in verbal information in a strange environment, from a stranger, in a compressed timespan, with student doctors watching. A printout or legible handwritten note of the main points would help. I also never comprehend the doctor’s name — they could write it legibly on the prescription sheet.
  • Don’t assume comprehension from fluency. Someone who is verbally fluent and intelligent is not necessarily equally proficient at verbal (especially aural) comprehension. Many people with Asperger syndrome “do not see the wood for the trees” and may be fixating on details without understanding the context. The same verbally fluent person may also lose the ability to comprehend or speak under pressure, for instance when interviewed by a panel or when routines are changed unexpectedly. Providing advance notice, information in writing and asking people to explain their own understanding of material in their own words can check adequate comprehension.
  • Use visuals. Sometimes a visual would help, even for things as simple as how many times per day (and when) to take drugs. For instance, I do not recall anyone ever telling me that some drugs work best at night or best in the morning — a simple take-home visual would clarify.
  • Don’t use or expect non-verbal communication. My face is not an accurate representation of my feelings or my comprehension.
  • Assume slow cognitive processing. Things might need saying twice, or in multiple modes. It is hard to take information in during a 5 minute consultation, so a summary at the beginning and end would help, especially when things (medication, location, routines) change.
  • Take care with physical contact. No, I don’t like shaking hands. I especially do not like hugging (as one former nurse tried to force me to do, because I was “starved of affection”). The physical contact and my rejection embarrasses both of us.
  • Don’t treat patients like livestock. Having a large number of people all attend together at the same time, in the same place for the same appointment time is degrading. There is no other way to describe it. It is like being livestock in a cattle market. I have waited up to 3 1/2 hours from my stated appointment time.
  • Minimise changes in drug and dose. Every psychiatrist (i.e. at least one and usually more per year) insists on trying to change medication, for no other reason than to exert clinical authority and to feel useful. They do not need to worry, they are useful monitoring satisfactory status.
  • Don’t force upward only medication changes. The aim should be the minimum maintenance dose of the minimum number of medications. Every psychiatrist has attempted to raise the dose of medication, without rationale. This has lead to a repeated pattern — the drug is raised to a level that caused adverse reactions, then it is withdrawn and replaced with an alternative, and the cycle resumes.
  • Be aware of sensory issues. (related to cattle market) Being in a room with noise, motion, TV / radio (especially not properly tuned, too loud, inane banter), perfume, toilet cleanser, wet people (on rainy days, wet coats smell horrible), being touched in crowded rooms, having to stand because there are no chairs, vacuuming during appointment times, etc.
  • Don’t assume bodily awareness. (also related to cattle market) Poor spatial awareness in unfamiliar places means people with autism might be slower, clumsier or need more space than you might expect.
  • Be careful with belief systems. Another hospital, and a nun here: Without reference to my religion or beliefs, I do not expect or want attempts at conversion or religious explanations of my hospital experience. (At another hospital, a nurse told me I had “sinned against Jesus” by attempting to harm or kill myself).