The psychological and physical harm that eating disorders cause is widely recognised – but what if the person concerned also has learning difficulties? Liz Trundle examines the added complications, and how they can be overcome…
Eating disorders are far from straightforward, even when there is no other condition present. But when a young person or adult also has autism or a learning disability, parents and carers will often struggle to get a diagnosis, faced as they often are with professionals insisting that their inappropriate or obsessive eating rituals are an inevitable consequence of their diagnosed disability.
Whatever form an eating disorder takes – be it anorexia nervosa, bulimia nervosa, binge-eating or EDNOS (Eating Disorder Not Otherwise Specified) – it is a powerful, sometimes life-threatening psychiatric illness which requires professional treatment and support.
According to the eating disorders support charity Beat, “Eating disorders are a serious mental illness, not a fad or a diet gone wrong. It is a coping mechanism, someone using food as a way to deal with the emotions they are feeling.”
Anorexia is a form of self-imposed starvation driven by a profound fear of gaining or maintaining a normal weight. Bulimia, on the other hand, is a combination of frequent binge-eating coupled with compensatory behaviours to avoid gaining weight. In both cases, the resulting physical symptoms will typically be perpetuated by a person’s disturbed body image and preoccupation with size and shape. People with learning disabilities, however, will often have difficulty in conceptualising these abstract ideas and therefore be more likely to be diagnosed with atypical eating disorders or ENDOS.
“Essentially there are two broad presentations present amongst people with learning disabilities,” explains Dr Shaun Gravestock – a consultant psychiatrist specialising in mental health and neuro-developmental psychiatry at South London Maudsley Trust. “Those with mild learning disabilities, where there is quite a good level of communication, who may display the more typical eating disorder characteristics of anorexia nervosa, bulimia nervosa or binge-eating disorder. Then there are those with severe learning disabilities, who are more likely to present with other abnormal eating behaviours such as eating inedible materials such as paper (pica), extreme food faddiness, food refusal and food regurgitation.”
The difficulty of diagnosis
Whilst acknowledging the difficulties in making a clear diagnosis in people with a learning disability, Dr Gravestock points out that binge and over-eating are far more commonly diagnosed than anorexia.
“Out of 262 patients studied, only two were found to have anorexia” he says. “Many more were suffering from binge or over-eating disorders and in the case of severe learning disabilities, pica – the eating of inappropriate material.”
As part of a working group at the Royal College of Psychiatrists, Dr Gravestock has drawn up modified diagnostic criteria specifically for people with learning disabilities known as DC-LC criteria. “These DC-LC criteria include a concern about weight – either too low or too high – worrying eating behaviours, faddy eating and/or physical problems with eating, such as swallowing. People with learning disabilities might also present with stress-related over- or under-eating or vomiting, triggered by a traumatic incident such as losing a parent or abuse.”
The majority of people with a learning disability and eating disorder are treated in the community through GP referral or local community care services, such as dieticians, community nurses, speech and language therapists, psychologists and psychiatrists. Inpatient treatment (within a psychiatric hospital) is only considered when when community treatment is repeatedly refused and physical and mental health risks cannot be safely managed by family or carers in the community.
“Monitoring at school or within a caring family is the best environment for recovery,” notes Dr Gravestock, “but because of the problems in communication, treatment usually depends on non-verbal psychological therapies such as art and music therapies, as well as positive behavioural support. So if a patient needs to be encouraged to eat a range of foods, but particularly likes chocolate milk, then she will be rewarded with this for eating a cracker or a sandwich.”
The extra care provided for people with autism or a learning disability means that this type of treatment in the community is more likely to be effective, since the sufferer will be given less opportunity to exhibit abnormal eating behaviours. If, however, as a consequence of their eating disorder their physical and cognitive condition becomes acute, then inpatient care within a specialist eating disorder unit may become necessary.
Gravestock (2003) Diagnosis and Classification of Eating Disorders in Adults with Intellectual Disability: The DC-LD Approach Journal of Intellectual Disability Research, 47, Supplement 1, pp. 72-83
Royal College of Psychiatrists (2001) DC-LD: Diagnostic Criteria for Psychiatric Disorders for use with Adults with Learning Disabilities / Mental Retardation
Following an NHS referral, Bradley, who has Down’s syndrome, was admitted to The Priory Hospital Hayes Grove – a specialist hospital for eating disorders. His admissions nurse, Esther, remembers how on arrival, Bradley displayed severe anorectic symptoms.
He was very unwell and fed with a nasogastric tube [used to carry food and oral medicines to the stomach through the nose]. His symptoms were both physical and psychological – he had problems swallowing, had all his food cut up and was fearful of certain foods high in calories.
He was quite depressed on entry and could be rather aggressive if his rigid routine was disrupted, but you could ‘de-escalate’ the situation by distracting him with something he enjoyed, like football books. As he gained weight and made friends, he lit up and had more ‘spark’.
Bradley came from an over-protective home environment with strict routines, but in an environment where he felt special to people other than his parents, he began to learn about his disorder and eat meals in the dining room with other patients. He didn’t have the attention span to access structured therapy sessions, but he attended ward-based groups and art therapy.
Bradley definitely made a recovery – he went from eating nothing to managing some food. He never completed a meal, but he learnt how to eat and that he had to have food to be a healthy weight.”
Since his discharge from Hayes, Bradley has been living in recovery in his own home with carer support. Names have been changed.
Physical symptoms: Severe weight loss (Body Mass Index of 17 or below), disrupted sleep/exhaustion, stomach pains, constipation, cold sensations. Also amenorrhoea in females (absence of periods); growth of downy body hair
Irritability; poor concentration combined with perfectionism. Also excessive exercising; ritual or obsessive behaviours; compulsion to please others (sometimes manifested in preparing food for others not for self), lying about food intake
Physical symptoms: Kidney and bowel problems due to repeated binging and purging; constipation; puffy cheeks; dehydration; fainting; sore throat; bad breath and mouth infections. Also stomach pains; irregular menstruation; dry skin; difficulties sleeping.
Eating large quantities of food; frequent sickness following meals; excessive use of laxatives or diet pills; obsessive dieting; secretive and deceptive behaviour; frequent mood swings
Binge-eating Disorder (BED)
Characterised by eating large amounts of food in a short period of time, especially outside of traditional meal times and when not particularly hungry, and eating until uncomfortably full. The condition frequently results in low self esteem, emotional difficulties and stress.
Often manifests as a tendency to pick at food; symptoms can include depression and feelings of inadequacy due to a perceived lack of control over one’s eating habits.
EDNOS (Eating Disorder Not Otherwise Specified)
Diagnosed when someone has some, but not all of the diagnostic signs indicating anorexia or bulimia. May be diagnosed when someone:
– fits the criteria for Anorexia Nervosa while still experiencing regular discharges of menses and having a body weight within the normal range, despite significant weight loss
– fits the criteria for Bulimia Nervosa, but binges less than twice a week or for a duration of under three months.
– exhibits normal body weight, but regularly engages in inappropriate compensatory behaviour after eating small amounts of food – self-induced vomiting after eating, for example, two biscuits.
– repeatedly chews and spits out, but does not swallow, large amounts of food.
The Priory Hospital Hayes Grove, Kent
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