Monthly Archives: August 2021

In blue I have highlighted the side effects Elizabeth is experiencing on the above drug which was prescribed at maximum level of 400mg now reduced to a still high dosage of 300mg. Below is taken from BNF Guidelines, link of which was sent to me when I contacted NICE recently to find out their recommendations on the withdrawal of the above depot. It is horrifying to note that NICE do not have any recommendations. The depot is being withdrawn by 50mg at a time following a review at every six weeks by ENFIELD COMMUNITY REHAB TEAM whose RC is Dr Ilyas Mirza. Elizabeth has just had a review from Dr Ahmad from the Community MH Team resulting in the reduction of 50mg bringing it down to 300mg. It is shocking to see so many terrible side effects that my daughter is suffering right now on this prescription but because of the fact that this is contraindicated to CNS she is having to go through agonising pain of withdrawal without any support and then all she wants is to be left alone as she recognises that she has been abused – she sees the depot as abuse. The question needs to be asked as to why she was ever put on it in the first place when although she took herself off Risperidone in one go cold turkey she was suffering terrible side effects on this and just look what Risperidone and Paliperidone causes in cases of autism which Elizabeth (not me) recognises as being HER condition. We await to hear the verdict from the Maudsley on diagnosis but one thing is for sure they can no longer pin the unscientific label of “paranoid schizophrenia” on my daughter and I await answers to my query on what is the correct diagnosis and I am not going to allow anything or anybody to cover this up.

I last spoke to Beatrice Awudu who completed the Discharge Note stating only physical conditions and I was told to contact Runa Bhoobun next but the question needs to be asked as to why this Discharge Notice did not come from Suffolk Ward itself rather than from the Home Treatment Team nurses. It is no wonder why my daughter does not feel well right now with this prescription in mind.


Indications and dose

Schizophrenia and other psychoses

By mouth Unfortunately the guidance needed is on the depot

  • For Adult
    Initially 20–30 mg daily in divided doses, increased if necessary up to 150 mg daily; usual maintenance 20–50 mg daily (max. per dose 40 mg), for debilitated patients, use elderly dose.
  • For Elderly
    Initially 5–15 mg daily in divided doses, increased if necessary up to 150 mg daily; usual maintenance 20–50 mg daily (max. per dose 40 mg).


Apathetic states; CNS depression; comatose states; phaeochromocytoma; withdrawn states Yes this explains why Elizabeth is being taken off it.



Blood dyscrasias; cardiovascular disease; conditions predisposing to seizures; depression; diabetes (may raise blood glucose); epilepsy; history of jaundice; myasthenia gravis; Parkinson’s disease (may be exacerbated) (in adults); photosensitisation (may occur with higher dosages); prostatic hypertrophy (in adults); severe respiratory disease; susceptibility to angle-closure glaucoma This is not looking good as it would appear that certain doctors have ruined my daughter’s physical health by their enormous prescriptions of antipsychotic drugs without a second thought to not doing harm to the patient.

Cautions, further information

Cardiovascular disease

An ECG may be required, particularly if physical examination identifies cardiovascular risk factors, personal history of cardiovascular disease, or if the patient is being admitted as an inpatient. AWAITED – Appointment recently cancelled by Inhealth private clinic referred to by NHS due to covid.


In adults

Prescription potentially inappropriate (STOPP criteria):

  • for all antipsychotics (other than quetiapine and clozapine) in patients with parkinsonism or Lewy Body Disease (risk of severe extrapyramidal symptoms)
  • in behavioural and psychological symptoms of dementia (BPSD), unless symptoms are severe and other non-pharmacological treatments have failed (increased risk of stroke) I cannot understand why quetiapine and clozapine are in brackets. Quetiapine caused Akathisia and Clozapine NMS, and other extrapyramidal symptoms.

  • for use as a hypnotic, unless sleep disorder is due to psychosis or dementia (risk of confusion, hypotension, extrapyramidal side-effects and falls)
  • in patients prone to falls (may cause gait dyspraxia, parkinsonism)
  • if prescribed a phenothiazine (other than prochlorperazine for nausea, vomiting or vertigo; chlorpromazine for relief of persistent hiccups; levomepromazine as an antiemetic in palliative care) as first-line treatment (sedative, significant antimuscarinic (anticholinergic) toxicity in older people, and safer and more efficacious alternatives exist)—
  • if prescribed an antipsychotic drug with moderate or marked antimuscarinic effects (e.g. chlorpromazine, clozapine, flupenthixol, fluphenazine, pipothiazine, promazine and zuclopenthixol) in patients with a history of prostatism or urinary retention (high risk of urinary retention).

See also Prescribing in the elderly.


Hyperthyroidism; hypothyroidism


Individual interactants:



Common or very common

Agitation; amenorrhoea; arrhythmias; constipation; dizziness; drowsiness; dry mouth; erectile dysfunction; fatigue; galactorrhoea; gynaecomastia; hyperglycaemia; hyperprolactinaemia; hypotension (dose-related); insomnia; leucopenia; movement disorders; muscle rigidity; neutropenia; parkinsonism; postural hypotension (dose-related); QT interval prolongation; rash; seizure; tremor; urinary retention; vomiting; weight increased


Agranulocytosis; confusion; embolism and thrombosis; neuroleptic malignant syndrome (discontinue—potentially fatal) Already had that on Clozapine which is why I took her off it.

Rare or very rare

Sudden death; withdrawal syndrome neonatal

Side-effects, further information

For depot antipsychotics—side-effects may persist until the drug has been cleared from its depot site.


Phenothiazines cause less depression of consciousness and respiration than other sedatives. Hypotension, hypothermia, sinus tachycardia, and arrhythmias may complicate poisoning. For details on the management of poisoning see Antipsychotics under Emergency treatment of poisoning.


Frequency not known

Anxiety; appetite abnormal; asthenia; concentration impaired; depressiondiarrhoeadyspnoea; eye disorders; fever; flatulence; gait abnormalgastrointestinal discomfort; glucose tolerance impairedheadaches; hepatic disorders; hot flush; hyperacusiahyperhidrosis; hyperlipidaemiahypersalivation; hypothermia; malaise; memory lossmyalgianasal congestion; nausea; neuromuscular dysfunction; pain; palpitations; paraesthesiaphotosensitivity reaction; reflexes increased; seborrhoea; sexual dysfunctionskin reactions; sleep disorders; speech disorder; syncope; thirst; thrombocytopenia; tinnitus; urinary disorders; vertigo; vision disorders; vulvovaginal dryness; weight decreased; withdrawal syndrome



Extrapyramidal effects and withdrawal syndrome have been reported occasionally in the neonate when antipsychotic drugs are taken during the third trimester of pregnancy. Following maternal use of antipsychotic drugs in the third trimester, neonates should be monitored for symptoms including agitation, hypertonia, hypotonia, tremor, drowsiness, feeding problems, and respiratory distress.

Breast feeding


There is limited information available on the short- and long-term effects of antipsychotic drugs on the breast-fed infant. Animal studies indicate possible adverse effects of antipsychotic medicines on the developing nervous system. Chronic treatment with antipsychotic drugs whilst breast-feeding should be avoided unless absolutely necessary. Phenothiazine derivatives are sometimes used in breast-feeding women for short-term treatment of nausea and vomiting.

Hepatic impairment

Manufacturer advises caution—monitor serum drug concentration.

Dose adjustments

Manufacturer advises dose reduction of half the recommended dose.

Renal impairment

Dose adjustments

Halve dose in renal failure; smaller starting doses used in severe renal impairment because of increased cerebral sensitivity.

Monitoring requirements


Monitoring of patient parameters

It is advisable to monitor prolactin concentration at the start of therapy, at 6 months, and then yearly. Patients taking antipsychotic drugs not normally associated with symptomatic hyperprolactinaemia should be considered for prolactin monitoring if they show symptoms of hyperprolactinaemia (such as breast enlargement and galactorrhoea).

Patients with schizophrenia should have physical health monitoring (including cardiovascular disease risk assessment) at least once per year.

In children

Regular clinical monitoring of endocrine function should be considered when children are taking an antipsychotic drug known to increase prolactin levels; this includes measuring weight and height, assessing sexual maturation, and monitoring menstrual function.

Treatment cessation


There is a high risk of relapse if medication is stopped after 1–2 years. Withdrawal of antipsychotic drugs after long-term therapy should always be gradual and closely monitored to avoid the risk of acute withdrawal syndromes or rapid relapse. Patients should be monitored for 2 years after withdrawal of antipsychotic medication for signs and symptoms of relapse.

Prescribing and dispensing information


Patient decision aid

In adults

Antipsychotic medicines for treating agitation, aggression and distress in people living with dementia. National Institute for Health and Care Excellence. June 2018.

Patient and carer advice


As photosensitisation may occur with higher dosages, patients should avoid direct sunlight.

Driving and skilled tasks

Drowsiness may affect performance of skilled tasks (e.g. driving or operating machinery), especially at start of treatment; effects of alcohol are enhanced.

Medicinal forms

There can be variation in the licensing of different medicines containing the same drug.

Tablet, Oral dropsBack to top 

Related Treatment Summaries


For the NHS to take someone off psychiatric medication this means that something they have discovered is wrong. The Drug Paliperidone was prescribed at the following hospitals:

Chase Farm Hospital Enfield

St Pancreas Hospital Ruby Ward

Cygnet Godden Green

Elysium Thornford Park

The Discharge Note points to CNS and all physical health but and no-one wishes to say what it is. The GP Surgery said they were told it was a mistake by Admininistration staff however we know this to be a lie. When I have confronted professionals to say that what they were doing was wrong the response has been one of arrogance. When I called at Chase Farm Hospital’s Foyer and complained that no-one could get through to Elizabeth and that we as a family were concerned. I was shown into an office on ground floor by SE with two others present.

When I complained about the medication Paliperidone (Risperidone Depot) previously found to be allergic to the response from AB was “Are you a Doctor or Nurse?” to which I replied “no” – I am just a mother. Her response then was “I went to University and I have a degree in nursing”. In other words you as a parent/carer are seen as nothing – your concerns are dismissed in that how could a parent/carer have a clue about the prescribed drugs. So I then stated that I had 5/6 drugs charts to indicate allergy to Risperidone. The RC told Elizabeth that “Risperidone is not Paliperidone” however I turned to leading experts for advice on the drugs/drug metabolism.

Take a look at the following:

In conclusion, catatonia could be observed several weeks after titration to a therapeutic dose of paliperidone in a patient without other psychiatric or medical comorbidity. Prompt discontinuation of the implicated drug and giving benzodiazepines are beneficial in patients presenting with catatonic symptoms associated with antipsychotics.

Author: Chao-Ying Tu, Yi-Ling Chien, Wei-Lieh Huang

Risperidone, an atypical antipsychotic, has been reported to induce catatonia in several patients, 1 4 Paliperidone, a major active metabolite of risperidone, was approved by the United States Food and Drug Administration (FDA) in December, 2006, for the treatment of schizophrenia.

Catatonia Associated with Initiating Paliperidone Treatment

Nathanael Mckeown

James H Bryan

Zane Horowitz

Catatonia Associated with Initiating Paliperidone Treatment *Oregon Health & Science University, Department of Emergency Medicine, Oregon Poison Control Center, Portland VA Supervising Section Editor: Eric D. Isaacs, MD Submission history:

Submitted May 1, 2008; Revision Received October 15, 2009; Accepted October 25, 2009 Reprints available through open access at

We present a case of catatonia, which occurred shortly after starting a new antipsychotic, paliperidone, an active metabolite of risperidone.

Catatonia may be caused by a variety of conditions, including metabolic, neurologic, psychiatric and toxic processes.

Interestingly, risperidone, which has been thought to cause several cases of catatonia, has also been recommended as a potential treatment.

We discuss potential mechanisms for causes of drug-induced catatonia as well as potential treatment options. [West J Emerg Med. 2010; 11(2):186-188.]

INTRODUCTION Catatonia can be caused by a variety of metabolic, neurologic, psychiatric, and toxic conditions. Risperidone, an atypical antipsychotic, has been reported to induce catatonia in several patients,1,2 although paradoxically, antipsychotics, including risperidone, have been used successfully to treat catatonia.3,4 Paliperidone, a major active metabolite of risperidone, was approved by the United States Food and Drug Administration (FDA) in December, 2006, for the treatment of schizophrenia.

We report what we believe is the first case of catatonia temporally related to paliperidone, after a single dose.

CASE REPORT An 84-year-old female with history of major depression and anxiety was evaluated by her psychiatrist for worsening anxiety and given a single dose of 3 mg of paliperidone. Eight hours later she became increasingly agitated and, according to her daughter, “looked like she was going to crawl out of her skin.” She then told her daughter “make it go away, make it go away,” and subsequently stopped speaking and responding to any physical or verbal stimuli, although she appeared awake and alert. She had no prior documented episodes of catatonia. Her daughter brought her into the local emergency department (ED). In the ED, she had a temperature of 37.3°C, pulse 80 beats per minute, blood pressure 161/72 mm Hg, respiratory rate 20 breaths per minute and oxygen saturation of 98% on room air. Her medications were citalopram, trazodone, levothyroxine, and paliperidone. She lived with her daughter, who related no recent trauma. The patient previously took risperidone, but it had been discontinued after several months because of mild akathisia, with both restlessness and tremor. Physical exam showed an alert, well appearing elderly female in no acute distress. Her pupils were equal round and reactive to light; she would not comply with extraocular muscle testing. She did open her mouth on request and stuck out her tongue midline; there was no erythema, and mucous membranes were moist. Cardiopulmonary exam was unremarkable; abdominal palpation did not cause any change in her facial expression and was soft without masses. While she complied with several requests for the cranial nerve exam she would not move her fingers or toes when asked, but was noted to turn her head in all directions and roll from side to side, moving all extremities equally. Her brachioradialis and achilles reflexes were equal and Babinski reflexes were downgoing. She exhibited stupor and mutism with fixed postures. Finger-stick glucose was 114 mg/dL. Intravenous diphenhydramine, 25 mg and benztropine, 0.5 mg were given for dystonia without any change. Noncontrast head computed tomography (CT) was performed due to concern for stroke and was unremarkable. Laboratory tests showed white blood cell count of 7.4 K/mm3 with 60% neutrophils, her hematocrit was 37.6%, and platelets were 203 K/mm3 . Electrolytes and renal function showed sodium 135 mmol/L, potassium 3.5 mmol/L, chloride 101 mmol/L, bicarbonate 20 mmol/L, calcium 9.8 mg/dL, blood urea nitrogen 12 mg/dL, and creatinine 1.0 mg/dL. Due to the lack of inpatient psychiatric beds, she was observed in the ED for 12 hours. Psychiatric consultation had no specific recommendations. Sixteen hours after the dose Western Journal of Emergency Medicine 187 Volume XI, no. 2 : May 2010 of paliperidone, without other therapy, she began to talk and interact. More detailed neurological exam showed no focal deficits. Her mood and affect were appropriate. She did not recall the events of the previous evening but remembered her daughter talking, although she was unable to respond. DISCUSSION

Catatonia is a neuropsychiatric syndrome characterized by a combination of mental, motor, vegetative, and behavioral signs and symptoms.

It has been described as a syndrome with prominent motor signs, with positivistic or excitatory symptoms, including mitgehen, in which there are excited movements with light stimulation, even with instructions to the contrary.

Other signs include stupor, immobility, mutism, and negativism, including gegenhalten (increasing resistance to passive movement of the limbs), waxy flexibility, posturing, stereotypic movements, echolalia, and echopraxia.6 Mutism and stupor are generally regarded as principal signs of catatonia, although neither are certainly pathognomonic.

The Diagnostic and Statistical Manual of Mental Disorders, DSM – IV, defines catatonia as the presence of at least two of the following: motoric immobility, excessive motor activity, extreme negativism/mutism, posturing/ stereotyped movements/prominent mannerisms or grimacing, and echolalia or echopraxia.6 Our patient exhibited several of these features, including immobility, with posturing at times, and extreme negativism, including mutism.

While her presenting differential was broad, lack of fever, headache, and a normal white count were inconsistent with infection. A lumbar puncture was not obtained, but complete reversal of symptoms without other therapy would also argue against meningitis or encephalitis. Non-convulsive status epilepticus or partial complex seizures should also be considered, although there was no history of a previous seizure disorder. An electroencephalogram (EEG) should be obtained if clinical suspicion warrants.

Catatonia has been associated with schizophrenia, major depressive disorder, as well as other medical conditions, including alcoholism, bi-frontal tumors, encephalitis, transient ischemic attack, chronic obstructive pulmonary disease, rheumatic heart disease, Alzheimer’s and vascular dementia, central diabetes insipidus, closed head injury, end stage renal disease, and renal tubular acidosis.8 Neuroleptic malignant syndrome, as well as severe extrapyramidal reactions, may also present initially with catatonic features, and has been considered by some to be a subset of catatonia.9 While no studies have specifically evaluated the prevalence of drug-induced catatonia, studies regarding general causes of catatonia suggest that 17-19% of all cases diagnosed as medical catatonia are actually drug-induced catatonia.

Another study found that antipsychotic-induced catatonia accounted for 24% of all catatonic patients referred to the ED of a general hospital.

Drug-induced catatonia has mostly been reported with psychotropic drugs, including fluphenazine, haloperidol, risperidone, and clozapine, non-psychotropic drugs such as steroids, disulfiram, ciprofloxacin, several benzodiazepines, as well as drugs of abuse, including phencyclidine, cannabis, mescaline, LSD, cocaine and ecstasy.

While psychiatric disorders may simply cause catatonia, it does appear that medications themselves can either cause or unmask an underlying predisposition to catatonia. The mechanism by which medications cause catatonia is not known. Mechanisms have been proposed based on animal models: 1) dopamine hypoactivity at the D2 receptor, 2) GABA hypoactivity at the GABAA receptor and hyperactivity at the GABAB receptor, 3) serotonin hyperactivity at 5-HT1A receptor and hypoactivity at 5-HT2A receptor, and 4) glutamate hypoactivity at the NMDA receptor.

Paliperidone is the active major metabolite of risperidone. It was approved by the FDA in December 2006 and released to consumers in the United States in January 2007. Its therapeutic activity is believed to be a result of both central dopamine type 2 and serotonin type 2 receptor antagonism. It is also an antagonist at α1 and α2 adrenergic receptors and H1 histaminergic receptors.

Plasma concentrations are estimated to peak approximately 24 hours after dosing with a terminal half-life of approximately 23 hours. Bioavailability is 28% with apparent volume of distribution of 487 L. Plasma protein binding of paliperidone is 74%. Unlike risperidone, paliperidone is not extensively metabolized by the cytochrome P450 enzymes and is not expected to cause clinically relevant pharmacokinetic drug interactions.10,11 ED evaluation of patients who present with catatonic symptoms requires a comprehensive evaluation and a wide differential and should not be initially attributed to the underlying psychiatric disorder. Treatable common causes of catatonia should be ruled out. Further diagnostic and laboratory studies may include complete blood count, comprehensive metabolic panel, thyroid stimulating hormone, urinalysis, cerebral spinal fluid evaluation, CT, magnetic resonance imaging, EEG, and other studies as clinical history and physical findings dictate.

In most cases of drug-induced catatonia, stopping the implicated drug and supportive care is usually sufficient.

Benzodiazepines and electroconvulsive therapy have also been recommended as potential treatments.5,12

Typical antipsychotics such as haloperidol should be avoided, although a trial of atypical antipsychotics (e.g. risperidone, olanzapine) has been suggested for patients who do not respond to other measures.3,4,13,14

Caution should be taken in considering using paliperidone in patients who have already had previous adverse reaction to risperidone.

Anticonvulsants, valproate,1 and carbamazepine2 have also been reported to be effective but may take longer to work than benzodiazepines. The Naranjo scale of adverse drug reactions15 is a validated score that assesses the probability of a causal relationship between a drug and a clinical event and is Paliperidone-Induced Catatonia McKeown et al. Volume XI, no. 2 : May 2010 188 reported based on several criteria as definite, probable, possible, and doubtful. Although this medication-catatonia relationship was scored as “possible” on the Naranjo scale, there had been no other change in medications or initiation of other medications, which may have been responsible for her condition. Also of note is no previous history of catatonic-like symptoms presented prior to initiation or after discontinuation of the paliperidone.

SUMMARY: A number of medications have been associated with catatonia, including antipsychotics. Providers should consider multiple etiologies when evaluating a patient who presents with catatonia-like symptoms. Paliperidone, similar to risperidone, may be a cause of drug-induced catatonia.

Address for Correspondence: Nathanael J McKeown, DO. Oregon Health & Science University, 3181 SW Sam Jackson Park Rd, Mail Code CB550, Portland, OR 97239. Email:

Conflicts of Interest: By the WestJEM article submission agreement, all authors are required to disclose all affiliations, funding sources, and financial or management relationships that could be perceived as potential sources of bias. The authors disclosed none. REFERENCES 1. Bahro M, Kampf C, Strnad J. Catatonia under medication with risperidone in a 61-year-old patient. Acta Psychiatry Scand. 1999; 99:222-6 2. Parraga H, Harris K. Catatonia under treatment with risperidone. J Dev Behav Pediatr. 2006; 27:369 3. Cook EH Jr, Olson K, Pliskin N. Response of organic catatonia to risperidone. Arch Gen Psychiatry. 1996; 53:82-3 4. Valevski A, Loebl T, Keren T, et al. Response of catatonia to risperidone: two case reports. Clin Neuropharm 2001; 24:228-31 5. Duggal HS, Singh I. Drug induced catatonia. Drugs of Today. 2005;41:599-607 6. Fink M, Taylor MA. Catatonia: A Clinician’s Guide to Diagnosis and Treatment. Cambridge, UK: Cambridge University Press; 2003 7. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 4th Ed. Washington D.C.: American Psychiatric Association; 1994 8. Huang TL, Ree SC, Huang YC, et al. Catatonic features: Differential diagnosis and treatments at an emergency unit. Psychiatry Clin Neurosci. 1999; 53:63-6 9. Taylor MA, Fink M. Catatonia in psychiatric classification: A home of its own. Am J Psychiatry. 2003; 160:1233-41 10. Paliperidone (Invega) for schizophrenia. Med Lett Drugs Ther. 2007;49:21-3 11. Invega (paliperidone) package insert. Janssen Pharmaceuticals. Issued 12/2006 12. Fricchione GL, Cassem NH, Hooberman D, et al. Intravenous lorazepam in neuroleptic-induced catatonia. J Clin Psychopharmacol. 1983; 3:338-42 13. Duggal HS, Nuñez CY. Risperidone treatment of periodic catatonia. Can J Psychiatry. 2005; 50:241-2 14. Hesslinger B, Walden J, Normann C. Acute and long-term treatment of catatonia with risperidone. Pharmacopsychiatry. 2001; 34:25–6 15. Kruger S, Braunig P. Intravenous valproic acid in the treatment of severe catatonia. J Neuropsychiatry Clin Neurosci. 2001;13:303–4 16. Kritzinger PR, Jordaan GP. Catatonia: an open prospective series with carbamazepine. Int J Neuropsychopharmacol. 2001;4:251–7 17. Naranjo CA, Busto U, Seller EM, et al. A method for estimating the probability of adverse drug reactions. Clin Pharmacol Ther. 1981; 30:239-45

Catatonia and catatonia-type breakdown in autism

Published on 06 December 2016

Author: Dr Amitta Shah

Dr Amitta Shah is a Consultant Clinical Psychologist with over 35 years’ experience in working with autistic children and adults. She has expertise in the diagnosis and management of catatonia in autism and has published papers on the subject with Dr Lorna Wing. Here she shares her insight and expertise of this under-recognised and poorly understood condition.

What is catatonia?

Catatonia is a complex neuro-psychological disorder which refers to a cluster of abnormalities in movement, volition, speech and behaviour. Historically, the term catatonia has been associated with schizophrenia and psychoses, but it is now recognised that it can occur with a range of conditions. 

Catatonia in varying degrees can occur in autistic children and adults. Studies suggest that between 12-18% of autistic people may present with varying levels of catatonia (Wing & Shah, 2000; Billstedt et al. 2005; Ghaziuddin et al, 2012). However, actual prevalence is likely to be higher as there are probably a lot more people with autism and catatonia who do not have a diagnosis and are not known to services.

Clinicians do not generally recognise the gradual presentation which occurs in autistic people rather than the full blown catatonic stupor state which is easy to diagnose and familiar to clinicians. Thus, catatonia type breakdown is rarely picked up at an early stage, and often misdiagnosed and mistreated.  However, if it is picked up early, it is easier to treat and can be reversed. Catatonia type breakdown can progress to full blown catatonia which is extremely difficult to treat and can lead to total immobility, dependence on all aspects of daily living and can become life-threatening. 

Catatonia-like breakdown causes enormous stress to families and affects the quality of life of the individual concerned in extreme ways. It is acknowledged that it is difficult to diagnose and treat especially as the symptoms and severity can fluctuate from day to day and also over time. It is one of the most enigmatic and challenging aspect of autism but the lack of clinical and research interest in this condition is of great concern and needs to be addressed. 

Symptoms of catatonia in autism

As early identification and diagnosis is important, it is crucial for all relevant professionals, clinicians, parents and carers to be aware of early indicators of a catatonia-like breakdown in autistic people. In particular, catatonia-like breakdown should be considered as a possible diagnosis for any autistic individual who shows a marked and obvious deterioration in:

  • movement
  • volition
  • level of activity
  • speech
  • a regression in self-care, practical skills and independence compared to previous levels.

Specific indicators of an onset of catatonia type breakdown may include any of the following:

  • increased slowness 
  • freezing during actions 
  • increase in repetitive movements and hesitations
  • difficulty in crossing thresholds and completing movements
  • marked reduction in speech or complete mutism
  • difficulty in initiating and inhibition of actions
  • increased reliance on physical or verbal prompts for functioning
  • increase in repetitive and ritualistic behaviours
  • getting locked in postures.


There is very little research evidence to guide medical treatment of catatonia in autistic people. The studies which are published on the treatment of catatonia in autism spectrum disorders (ASD) are mainly single case studies using various psychiatric medications or electroconvulsive therapy (ECT) for cases with acute catatonic stupor.

There is a recent paper (De Jong, Bunton and Hare, 2014) which has reported a systematic review of the literature on all interventions used to treat catatonic symptoms in autistic people. The conclusions are that the quality of the studies is poor and there is no convincing evidence that any particular medication or ECT is effective for catatonia type breakdown. The studies also worryingly ignored the side-effects of these treatments and rarely reported long term follow-up of effects.  

In the absence of relevant good quality evidence based research, it is important for professionals and carers to refer to guidelines developed by experienced clinicians. Treatment guidelines based on clinical experience are given for mild, moderate and severe catatonia in Dhossche, Shah and Wing (2006). It is imperative for clinicians not to overlook that psychiatric medications may trigger or worsen Catatonia in autistic individuals. Also, drastic treatments such as ECT and/or high doses of lorazepam should only be tried as a very last resort in cases of severe catatonia which is life-threatening.

We recommend a psychological approach which is based on our finding that stress and anxiety, and side effects of psychiatric medication are the main causes of catatonia-like breakdown (Wing & Shah, 2000). This is an individual approach which investigates the particular stress for the person concerned and addresses this based on a comprehensive psychological assessment and working with carers and local multi-disciplinary teams to implement a holistic plan. This is described in Shah and Wing (2006). The main aspects of this approach include the following:

  • early identification of possible indicators
  • psycho-education to promote understanding of the condition, in particular to carers, professionals and service providers
  • searching for and eliminating any possible causes such as psychiatric medications
  • assessment of the person’s autism and their vulnerability to stress
  • identification of stress factors which may include environmental, lifestyle, and psychological
  • reducing and eliminating stress factors which may include changes in the environment, daily programme, increased staffing and support, etc.
  • providing verbal and physical prompts to overcome movement difficulties
  • maintaining and increasing activities which the person enjoys or has done so previously
  • providing external stimulation and motivation  at appropriate levels to keep the person engaged and responsive and active 
  • increasing structure and predictability and occupation.

Further information

Autistic fatigue – a guide for parents and carers

Exhaustion (fatigue) and then burnout can happen to anybody. Being autistic can make fatigue and burnout more likely, due to the pressures of social situations and sensory overload. If your child or the person you care for is experiencing fatigue or burnout, helping them to manage their energy levels is essential, as this guide explains.  

 What is autistic fatigue and autistic burnout? 

‘Autistic fatigue’ and ‘autistic burnout’ are terms that came from autistic people, and we are learning from the experiences of autistic adults.  

Fatigue, and then subsequent burnout, can happen to anybody. Autistic people, however, can be more susceptible to both, due to the pressures of everyday life, having to navigate social situations and sensory overload.  

Trying to cope with these pressures can lead to exhaustion (autistic fatigue) and over time this can lead to extreme exhaustion or autistic burnout. 

Autistic adults have described various ways that autistic fatigue and burnout have affected them. Autistic fatigue has often been described as exhaustion with additional difficulties such as: 

  • increased meltdowns and sensory sensitivity  
  • physical pain and headaches 
  • physically shutting down, including the loss of speech.   

Autistic burnout affects all aspects of a person’s life, and this makes it different from professional burnout, which is related to work.

What causes autistic fatigue and burnout? 

There are various things that can cause autistic fatigue. Autistic adults suggest several causes, including:  

  • sensory overload  
  • dealing with social situations  
  • masking or camouflaging their autistic traits 
  • suppressing stimming  
  • a sense of not meeting other people’s/society’s expectations of them. 

Changes in your routines or day-to-day life, such as a change of school or job, can increase anxiety and can be additional causes for autistic fatigue and burnout. 

Due to increased sensitivity and stress levels during autistic fatigue, your child may be less able to recover quickly from meltdowns. This exacerbates the exhaustion and stress they experience.

What can I do if the person I care for is experiencing autistic fatigue and burnout? 

Use energy accounting 

Energy accounting is a system used to set manageable limits on your energy levels so you do not deplete yourself to the point of burnout.  

Help your child or the person you care for to set a limit on how much energy they have in a day or week and estimate how much certain activities drain them. Also work out how much certain activities energise them.  

You can then try to plan and balance their activities and energy over a day or week to try and manage stress limits. Make sure you build in time for relaxation and recovery.  

Time off and rest/relaxation 

Whether you use energy accounting or not, time off from work or school and other high-stress activities is key to managing stress levels. Ensuring time for activities/interests that re-energise and promote relaxation is key. This could be connecting with family and friends or enjoying hobbies or interests.  

Time without having to mask 

Autistic people often feel the need to hide or mask their autistic traits in public, for example by suppressing the urge to stim. It can be important to factor times into your child’s day for things like stimming, somewhere they feel comfortable and able to do so.

Useful resources 

Autistic people’s accounts 


Anyway there is no doubt my daughter Elizabeth has had the most horrific time prescribed drugs that all physicians were well aware there was previous allergy recorded yet they continued. The Doctors were well aware because I sent the drugs charts with a line put through Risperidone as being allergic to. Most concerning of all the SOADs provided by the CQC did nothing to protect Elizabeth and allowed maximum levels of drugging to the point she is recorded as being of “high risk of mortality” Mews Score 3.

The rest of the family came to visit Elizabeth yesterday and were in tears at her decline.

Elizabeth spent most of the time asleep in her bed. She also suffers incontinence – there is something wrong with her breathing. They have discharged Elizabeth with Catatonia – now they are having to take her off the antipsychotic drugs which caused this condition. I would accuse Barnet Enfield and Haringey MH Trust of causing injury and all the other hospitals of going along with treatment that clearly was not working resulting in seclusion after seclusion – nothing but punishment.

Elizabeth knows there is something very wrong with her right now. She has spoken that she is too damaged to fix.

Parents/carers like me are left to pick up the pieces and I believe there was a reason why Elizabeth was scheduled to go to the Priory – all of this would have been simply covered up if that had happened.

A big thank you to NAS, Mencap and Access Charities for helping us.

We stayed in a nice hotel overnight and arrived by cab today at the Maudsley Outpatient’s Department. I struggled to push and control the wheelchair which is very heavy but staff there were most helpful. Elizabeth suffers from vertigo and blurred vision now she is on fortnightly Clopixol depot which I have looked up to be side effects of the drug currently being prescribed. There is also there is something wrong with Elizabeth’s breathing (noticed by her previous care coordinator). Elizabeth is recorded in most recent files as being of “high risk of mortality” and having a “Mews Score 2”. She was discharged from “care” in a bad way, barely able to walk and with only physical health conditions stated on the Discharge Note; I assume this is why she is being taken off all psychiatric “medication”. No-one will explain exactly what is meant on the Discharge Notice. Anyway, on London Underground as well as over-ground the services we experienced were first class service. I was most impressed with how staff dealt with us and went out of their way to help. Dr Cumming carried out the assessment alone with Elizabeth whilst I was interviewed separately by someone whose name sounded very familiar, (Alex). I do not know if Elizabeth communicated well with Dr Cumming during the assessment because she finds it very hard to talk to men, having been so badly abused whilst under care. She said words to this effect that she was not going to speak much during the assessment and felt very uncomfortable that the assessment was with a man, despite my reassurance that Dr Cumming was an expert in the field of autism. As for the other Doctor who interviewed me, I am not sure if this is the same “Alex” who was present previously at an assessment back in 2012 when Elizabeth was referred to the National Psychosis Unit. Elizabeth was panicking about this autism assessment prior to it but autism is what she identifies as her diagnosis and has done so for quite some time now, having researched it extensively. She hates meetings of any kind and was fearful, thinking that this would be similar to an exam where you pass or fail as it meant so much to her to have this Autism diagnosis. It took all my effort to even get her to come downstairs to the dining room for breakfast. I had to virtually dress Elizabeth and she kept saying “I do not think I can go through with this” over and over again and then accused me of being abusive in taking her to Maudsley yet she desperately wanted this appointment. The most recent screening at Elysium pointed to autism Cygnet commented to this effect also but neither of these institutions carried out a proper autism assessment and therefore they would not budge from mental health labels given locally. St Pancreas Hospital commented that they were “guided” by the local area and of course they were being funded by local Commissioners (North Central London CCG – JR and JM). Since I have been accused of influencing Elizabeth I told Dr Cumming and Alex that it was Elizabeth who thought she had autism but I would not disagree with this, having read past file notes going right back to the first referral plus the extensive research that Elizabeth had sent to me. I had little contact with Elizabeth whilst at Elysium and Cygnet and so could not have put words in her head about her diagnosis. The assessment took place between 1.00 pm and 4.00 pm today which again concerned me as I knew that Elizabeth would be very tired. She has to constantly rest and sleep during the day which is not normal for a young person of 34. She was not like this before her admission back in May 2020. I’ve no idea of the outcome of this assessment as Dr Cumming commented that this was a “complex case”, stating he could not give an immediate answer and this would entail having to liaise with other professionals. However this concerned me especially because of the way Elizabeth has been treated locally under Chase Farm Hospital Enfield MH whose RC did not complete the discharge note, leaving this to others in the Home Treatment Team to do so. The worst thing is that this assessment may not have Elizabeth’s desired outcome. I was questioned by “Alex” separately who went right back to early childhood between the age of 1 – 4. Many of the questions I could not answer because I was working, not around to observe the pattern of play etc. Apart from mentioning that Elizabeth was extremely reserved and did not mix well with others, there was nothing of huge concern, except for her physical health. I commented on lots of activities I provided in the hope that this might help Elizabeth such as ballet, swimming, piano lessons and Brownies etc. I knew nothing back then about Autism and was not looking out for abnormal behaviour because I was swamped with caring responsibilities for my father who had Alzheimers and working too. What I did point out was Elizabeth’s ill health as a small child who suffered from asthma so badly I changed the entire windows to my house as I felt they affected her due to condensation. I mentioned that Elizabeth was prescribed steroids by her GP as a small child and underwent a hernia operation as an emergency case and that this was not identified immediately by her GP Surgery. She had a strangulated hernia and steroids were prescribed when Elizabeth developed a bright red rash so she was not at all well as a small child. I verbally corrected certain things going way back wrongly recorded in the files – told them about an MRI scan revealing a cyst and that there were complications at birth recorded wrongly as “normal”. I also advised Alex that doctors right from the very beginning thought her condition to be developmental/Autism. There was no mention of Schizophrenia. There was nothing in particular to make Elizabeth stand out re behavioural problems as a small child but it was at secondary school it became evident she avoided certain lessons and played truant to avoid lessons she either found difficult or did not like. According to someone related to a friend of mine who was in Elizabeth’s class at school, she was totally “spaced out”. Classes consisted of over 30 pupils and so perhaps this was just not noticed by teachers. There were several occasions where Elizabeth went out of her way to avoid going to school and once washed her entire uniform and put this on the washing line in freezing conditions so she had nothing to wear but I went out and bought new uniform and insisted she went to school. Then there were situations such as work experience where she worked in a kitchen and it was the time of the World Cup where the canteen would be busy and Elizabeth refused to go in so I insisted. This she has not forgotten and now says I abused her for making her go to school etc. She even refers back beyond secondary school to primary school that she was struggling but no-one noticed this so I have no idea whether what I said to Alex ticked the right boxes.

After my interview by Alex I was shown out of the room and joined Elizabeth who looked very stressed out and not at all happy. Dr Cumming and Alex then saw us together and there were further questions. The whole thing had been an absolute ordeal for Elizabeth who insists she is Autistic and will probably continue to say she is autistic no matter what the result of the assessment. I certainly respect this and have seen traits that match the description of the Autism condition. Elizabeth has spent many hours researching the condition of Autism extensively on the internet and has sent me the research papers/articles which she can associate with. Elizabeth has also researched pigeons, species of pigeons and birds in general plus the kind of music she likes which is not to my taste at all as I find it very depressing but Elizabeth says I do not understand but she takes huge note of the lyrics.

There is much mention of Autism whilst she was under Elysium Thornford Park where she underwent screening which is recorded in file papers/emails plus other disturbing matters since Elizabeth admitted the abuse suffered at Moti Villa and prior to this which she does not usually talk about. Elysium were fully aware yet it is constantly mentioned in file notes that Elizabeth had male patients outside her door at night which was very triggering for her.

It is the local area who have consistently refused to budge on autism and carried out their own assessments against Elizabeth’s wishes which I see as conflict of interest. Commissioners at first refused the CTR until Mencap/NAS and Access got involved. We are so grateful to them as otherwise Elizabeth would have been sent to the Priory “to establish her greater on medication” which says it all and the findings recorded on the Discharge Notice would not have been known about. Local doctors/team at Chase Farm Hospital Enfield (Suffolk Ward) and in the community have stuck with “Paranoid Schizophrenia” for so long and prescribing drugs such as Risperidone knowing full well that she was previously found to be allergic. However now they can no longer state Schizophrenia as the Discharge Note clearly points to “abnormal findings on scans” -not one mention of ICD10 F20.”

Extracts from Elysium’s Files “of high risk of Mortality and choking”

File note dated 13.08.2020 an entry by BY 15.40 1-1 Psychology: “her belief is that she has high functioning autism”. (this is what Huntercombe reported) “EB appeared fairly focused on her belief that she has Autism and with attaining a diagnosis of Autism though she avoided questioning on what led her to believe she had Autism she personally finds difficult, which could relate to Autism”. In another file note “EB was feeling distressed about her medication and her diagnosis.” OTA recommended her to speak with the doctor or nurse in charge to which she responded that “they were males.” this signified that Elizabeth found it difficult to speak to any male professionals.

File note 06.08.2020 Psychological by TM 16.04: “EB does not agree with her diagnosis of Paranoid Schizophrenia and believes she is Autistic.” She confirmed “I have not been diagnosed formally with Autism but want an assessment done.” All along Elizabeth mentioned of her dislike of male nursing staff.

In another file note Elizabeth enquired “when is the the ASD screening taking place”.

Elysium file note dated 24.09.2020: “I have autism you know, they keep giving me medication for Schizophrenia but I have autism”. She referred about flashbacks and nightmares of rape under care at Moti Villa which is wrongly recorded as being consensual. Absolute rubbish!

File note dated 09.09.2020: I do not agree with my diagnosis and want to come home and not be sent away to a locked rehab. Despite this she was assessed for Bromley Road locked rehab where she did not want to go. JM Commissioner at NCLCCGEnfield is mentioned as it was referred to her that Elizabeth wanted to go to somewhere where they had animals not a locked ward.

File note dated 20.08.2020 (BY): “a full autism assessment would not be completed at Curridge Ward”. During two months of incarceration costing not far off £6000 a week it should be questioned as to why Elysium could not do an Autism assessment and why she was sent back to the local area just when Dr Harinder Bains took over and promised an autism assessment. She was not meant to come back to the locality as it was decided against her wishes for her to be sent to another locked rehab despite the fact she clearly emphasised she did not wish to go and wanted to come home. Why have the Commissioners paid so much public money on wrong facilities that have not helped in the slightest bit and have led to her being discharged even more disabled than we have ever witnessed before.

File note 04.08.2020: “she denied having a mental illness stating she has autism” – “Why cant I go to my own flat instead of being here?” (good question!). There is also disturbing evidence that Elysium could not read writing which was illegible on a drugs chart no doubt from Suffolk Ward about the frequency of the depot injection which is most disturbing.

File note 14.08.2020: “she phoned police to report she was not being looked after well as she is Autistic yet held as a MH patient”. This led to her being placed in seclusion as a punishment by Elysium where they kept offering her medication which she refused but accepted PRN when they threatened her with IM medication. It was mentioned that she received two IM injections. “no further management issues!” (this is what is recorded). Her mobile phone was confiscated by Elysium for “improper use” for calling the police. When Elizabeth asked for her mobile to be returned to her nursing staff said “her behaviour did not warrant having her mobile back”.

File note 07.09.2020: this mentions about her pigeons and her feeling of being unsafe around men who worked on the ward.

With regard to the ASD screening this is mentioned in file note 28.08.2020: it had to be abandoned due to the depot making her feel so tired.

My daughter’s treatment at Elysium was quite shocking – in another file note it is stated that a second antipsychotic not authorised by the SOAD (Haloperidol) also prescribed by Cygnet Godden Green was discontinued.

File Note 21.08.20 (DM) ignored the SOAD stating that Elizabeth required a second antispychotic approving IM if she refused tablet form. So this went against SOAD advice. They tried to cover up a prescription of Procyclidine which was questioned at the Tribunal but Elizabeth had refused this Parkinsons drug apparently.

File note 05.10.2020 states: “EB does not believe she has a mental illness but has physical health issues and referred to the private tests done through endocrinology”. (quite right too yet this is recorded as lack of insight despite the extensive private tests done through Endocrinology pointing to endocrine dysfunction) Elysium put two male nurses on 2:1 obs outside Elizabeth’s room which was really triggering and yet they knew this as she had admitted the truth of what happened under Moti Villa and beyond. I honestly feel that this was cruelty on their part and lack of insight as stated in file note 14.09/2020 and further referenced in file note 09.09.20 “she dislikes having too many male staff around and struggles at night.” File note 30.09.2020 stated “paranoid about staff especially male staff she feels uncomfortable around” then disturbingly ignoring the P450 liver enzyme test results “Sought T3 allowing up to 150% BNF max antipsychotics “no allergies recorded” (Oh yes there were allergies recorded they were made well and truly aware of” File note 25.08.2020 records how Elizabeth was triggered by male members of staff. “I feel I am being abused”. (yes I have no doubt of that) “Disturbed by male members of staff talking outside her door last night” as per – file note 07.08.2020. All the time whilst at Elysium she was missing her flat and pigeons. All the time Elizabeth was talking about having autism and wanting an assessment.

File note 29.09.2020: “I have received the SOAD certificate regarding increasing antipsychotics to 150% BNF max. EB has been angry today about her medication so I decided not to inform her today. I will inform her should we ever decide to increase the dose or add in a second prn antipsychotic.” (But this is against SOAD advice!) and also it is stated that at the time whilst being prescribed max medication she had no capacity by Elysium.

So the outcome of the autism assessment is up in the air, pending further investigation and contact no doubt with local team who will deny such diagnosis whilst they desperately stick together and try to cover everything up and the harm they have caused. What concerns me is that Elizabeth has not been treated fairly all along by them for so many years and not been listened to by anyone other than me, which has led to be being extensively bullied when I have spoken up for her and then taken to court so often to get rid of me as the Nearest Relative. Most recently I have featured about being labelled as Vexatious which previously they tried and failed to do. This only occurs when there is something big to cover up and in steps the Medical Director and Chief Nurse to assist staff and even higher up the Chief Executive Officer to not respond to my MP in over a year.

I do think Elizabeth has Autism traits as she is constantly extensively researching topics of interest to her such as her condition of autism, her taste in music, favourite bands and certain places she would like to visit, ie countries such as Germany as she describes herself as a German lady even though she was born here in the UK. That is because her Grandma was German and she was close to her Grandma. Also she extensively researches medication currently being prescribed and about her pigeons that visit her balcony, all of whom she has named. She has a very different way of communicating and interpreting situations which was discovered when she went to stay with private MH professionals in their home on the Isle of Lewis and in Australia, who saw no sign of any psychosis but thought her condition was developmental which I would not disagree with at all. No way did any of these professionals in four months think she had paranoid schizophrenia.

I was asked the question by Dr cumming “if the diagnosis did not come out as Autism what would be my reaction?”. I told Dr Cumming that it is not me who wanted the Autism diagnosis but that it would mean so much to Elizabeth and I described how overjoyed Elizabeth was at being told by the whole team at Huntercombe, Roehampton, that she had high spectrum Schizophrenia. Joy soon turned to despair when this entire team was ignored by Dr HM of Suffolk Ward who also ignored her her own drugs charts stating Allergy to Risperidone. I told Dr Cumming that if in his opinion the diagnosis was not Autism, especially after he consults with the local area, now that the Discharge Note states all physical concerns and no mention of mental health, I would want to know which of the following CNS conditions applied and I showed him the Discharge Note which states:




The central nervous system is the largest and the most complex part of the nervous system. It works to align the activities of all the body parts and is vulnerable to different disorders and diseases. The article throws light on the various disorders of the central nervous system.

The central nervous system (CNS) plays an important role in controlling the human behavior. It comprises two main components: the brain and the spinal cord. This system is held within the dorsal cavity, with the brain in the cranial cavity and the spinal cord in the spinal cavity. The nervous system is made up of nerve cells, called neurons, which allow the various parts of the body to coordinate with each other through the brain and the spinal cord.

A person affected by any type of disorder of the CNS may be identified due to the symptoms such as delay in developmental milestones, changes in activity, reflexes or movements, abnormal head growth, variations in level of consciousness or mood, muscle rigidity, tremors or seizures, severe headaches, visual changes, and lack of coordination.

Disorders of the CNS

Transverse Myelitis (TM)

It is an inflammatory attack on the spinal cord, with no brain or optic nerve involvement. It is mainly a monophasic condition where the attack occurs only once. In rare cases, the patient may experience more than one inflammatory attack on their spinal cord, and this condition is called recurrent TM. Some patients may also experience an inflammatory attack in the spinal cord along with an underlying rheumatic disorder like Lupus or Sjogren’s syndrome. Since the underlying cause is unknown, it is also referred to as idiopathic TM. The symptoms of TM develop quickly within a few hours to a few weeks. The spinal cord is responsible for carrying motor nerve fibers to the limbs, trunk, and sensory fibers from the body back to the brain. Inflammation within the spinal cord disrupts these pathways and causes symptoms like limb weakness, sensory disturbance, bowel and bladder malfunction, back pain, and radicular pain.

Neuromyelitis Optica or Devic’s Disease

It involves inflammatory attacks in the spinal cord and optic nerve. A person affected by this condition is at a higher risk for multiple attacks of spinal cord inflammation or optic neuritis, or both. The main symptoms of NMO are loss of vision and spinal cord dysfunction. The visual impairment is manifested by visual field defects, loss of color vision, decreased visual activity, etc. The spinal cord dysfunction causes muscle weakness, reduced sensation, and loss of bladder and bowel control. Patients may also experience an acute and severe spastic weakness of the legs (paraparesis) or all four limbs (tetraparesis).

Multiple Sclerosis

It involves an inflammatory attack that may occur anywhere within the CNS, i.e. brain, spinal cord, or optic nerves. The disease usually occurs in young adults, and is more common in females. Most of the patients have brain lesions during the onset of the disease. A person affected by multiple sclerosis may observe symptoms like muscle spasms, dysarthria, lack of coordination and balance (ataxia), hypoesthesia and paraesthesia, visual problems, and loss of bladder and bowel control. Its relapses are quite unpredictable and happen without any warning or obvious inciting factors.

Alzheimer’s Disease

It is a progressive, neurodegenerative disease that affects the brain and is a common form of dementia. It reduces the generation of certain brain chemicals which are essential for communication between the nerve cells like norepinephrine, soamtostatin, acetylcholine, and serotonin. The causes for the disease are not completely known but abnormal protein deposits in the brain, environmental or genetic factors are some suspected causes. Alzheimer’s disease leads to impaired memory or judgment, language deterioration, emotional apathy, and impaired visiospatial skills.

Some other disorders are Parkinson’s disease, epilepsy, amyotrophic lateral sclerosis (ALS), Huntington’s chorea, etc. Presently there’s no cure for these disorders but treatments like medication, rehabilitation activities, clinical trials, and assistive technology may be beneficial for the patients.

There has been a wall of silence since I have tried to find out about the above. If the diagnosis does not come out as autism then one of the above must apply and I as a mother want some answers especially as regards the abnormalities discovered in scans. It is all very well the Community RC Dr IM stating that diagnosis is unimportant. Well of course it is especially when you need to inform the DWP on what the real diagnosis is. There is such an enormous backlog by the DWP going back to February apparently so Elizabeth is not in receipt of benefits she is entitled to now she has come out so injured by her treatment over the past year to the point she can barely walk.

After the assessment was over, it was hard work getting back home, as home is a fair distance away and a bit of an awkward journey which meant having to get the wheelchair onto trains and buses but once again I could not fault London Transport and their help and support.

By the time we were on the Tube bound for Oakwood Elizabeth was not at all happy and kept moving from one seat to another. – a man sat on the sea next to her with a guitar which disturbed her greatly and so did young children on the carriage. I struggled to push the wheel chair with Elizabeth on it and I decided to return Elizabeth straight back to her flat as she was clearly traumatised and not at all happy at all. This is when she can flair up and no amount of drug treatment can calm her when she is like this and just needs rest and space from crowds of people and unfamiliar surroundings of detrimental effect on her. Much of the traits I have noticed in her behaviour I have seen similar to that of my father who had Alzheimers who did not take well to changes and displayed fear in his behaviour. He also took to certain carers better than others especially his regular carers rather than at the care home where he attended day centres.

I have noticed that Elizabeth also does not like any changes. She does not like to engage with people and often says that she is not a person and is totally mixed up as to whom she is. Sometimes she can flare up and say the most hurtful things and the word “abuse” is a big word in her vocabulary she uses this all the time. This can apply to even my effort to take her to various GP referrals because she does not like attending anything like this. She especially refers to mental health professionals who give her the depot as being abusive.

I told the doctors today that I did not disagree with autism and have respected Elizabeth’s understanding that this is her condition which most certainly is not schizophrenia. Elizabeth has even sent me research papers to educate me on autism and says no-one under MH understands her. However, I think there is something else wrong of a physical nature in addition that is neurological rather than mental illness. You only have to look at the files from Elysium and how they drug people to the hilt ignoring STOMP which could point to injury or perhaps the abnormal scans took place before admission going back to May 2020 as Elizabeth recalls having scans done then. I believe Elizabeth’s treatment over the past year has led to further decline to the point that she now has serious physical health concerns. Finally the GP surgery is taking things seriously unlike before when she was begging for help and attention and now they are making referrals for ultrasound and ECGs. There is clearly something wrong with Elizabeth’s breathing, she has excess saliva – I am not even a doctor to conclude this. Whatever were these doctors doing and especially the CQC SOAD allowing prescription of drugs to the max level without a thought for Elizabeth’s physical health which has now been destroyed or has this in fact always been evident right from Birth but ignored by physicians.

Whatever the outcome of the Autism Assessment there needs to be a full and thorough investigation because Elizabeth is entitled to know what her real diagnosis is as it has changed so dramatically. I am not letting this drop or be dismissed even more so if her diagnosis she feels applies as “autism” is rejected. How many more people are affected by misdiagnosis and treated wrongly to the point they become completely disabled like Elizabeth which then has a knock-on effect on their families who suffer as a consequence.

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