Dysphagia for people with autism and learning disabilities

Introduction

Dysphagia relates to any difficulties to do with swallowing that might affect the health and wellbeing of people (Royal College of Speech and Language Therapists). Choking is when the airway is blocked and aspiration is when food and drink are taken into the lungs. Individuals with Autistic Spectrum Conditions (ASC) and/ or learning disabilities are more likely to have sensory motor and coordination difficulties. This can lead to challenges using cutlery or with chewing and swallowing. Sensory and emotional dysregulation and historical trauma can lead to anxiety around meal times which can affect eating choices and tension, which in turn may have an impact upon swallowing and digestion. Difficulties Occurring when Swallowing People with Autistic Spectrum Conditions and/ or learning disabilities may experience difficulties at any phase of swallowing. At any of the three phases, these include:

Oral Phase

Loss of appetite, drooling, inability to clear food, poor lip closure, limited chewing, poor tongue movement, poor bolus (food) formulation, failure to project the bolus backwards in one movement, poor dentition and hyper or hypo sensitive to tastes, textures and temperatures. Pharyngeal Phase Choking, coughing and aspiration. These can occur if any of the following factors do not occur:

  • The swallow reflex fails to activate. This means that the pharyngeal stage cannot take place and may result in an inability to swallow which will cause drooling and pooling of saliva and the airway may be unprotected.
  • If the swallow reflex is delayed, aspiration may occur.

Oesphageal Phase

It is not possible externally to observe the swallow. If there are concerns then an examination needs to take place in a hospital by a gastroenterologist using various techniques, for example an endoscopy. This is a camera that is passed down through the mouth into the oesophagus.

Consequences

Dysphagia may have a great impact on people with Autistic Spectrum Conditions and/ or learning disabilities. The consequences of Dysphagia can include:

  • Reduced quality of life
  • Oral health problems
  • Poor health
  • Respiratory difficulties
  • Inadequate nutrition
  • Behavioural difficulties
  • Decline in function
  • Loss of dignity
  • Death

Helping People with Dysphagia

Dysphagia support in people with Autistic Spectrum Conditions and/ or learning disabilities aims to:

  • Ensure that the person is well nourished and hydrated.
  • Ensure that the person is safe from choking.
  • Avoid chest infections/ aspirational pneumonia.

Considerations for Food Choices

Some people have a tendency to cram food into their mouths and attempt to swallow food before forming an adequate bolus. Cramming can be seen more often in people with Autistic Spectrum Conditions and/ or learning disabilities compared to the general population. This increased prevalence can be due to sensory seeking, a history of neglect or abuse, or anxiety around others. It is important to encourage the person you are supporting to chew and not to swallow before the bolus is adequately formed. Independent feeding is always the primary goal. Specialised cutlery as recommended by an Occupational Therapist may support with this.

Modifications of Food and Drink

In some cases the risk of aspiration on normal liquids is too great and so it may be necessary to thicken liquids using powder. It may also be necessary to modify the texture of the food. There are NHS national descriptors for food textures. For more information please visit the National Patient Safety Agency website: www.thenacc.co.uk.

High Risk Foods

When supporting people with Autistic Spectrum Conditions and/ or learning disabilities and Dysphagia it is necessary to be aware of foods that may pose a higher risk. Some foods are identified as high risk because they have very difficult textures to chew and swallow. Please see the list below:

  • Stringy fibrous textures (e.g. pineapple, celery, lettuce,

green beans)

  • Vegetable and fruit skins (e.g. grapes, oranges, runner

beans)

  • Mixed textures (e.g. soup with lumps, tinned fruit, cereals

that do not blend with milk)

  • Crunchy foods (e.g. crisps, dry biscuits, toast, well cooked

pastry)

  • Doughy food (e.g. bread crusts, naan bread, pitta bread)

Crumbly foods (e.g. crumble, crusty bread, pie

crusts)

  • Hard foods (e.g. boiled sweets, chewy sweets, nuts)
  • Rusks (e.g. sweetcorn, granary bread)

Positioning and Equipment

The Occupational Therapist has a significant role in working together with the Speech and Language Therapist to ensure that a person is seated in an optimal position for eating and drinking. The ideal position for eating and drinking is when someone is sat at right angles at the table. If someone is being fed they should never be fed in a reclined position or with their head tilted back. People with sensory motor and coordination difficulties may benefit from adapted cutlery. These come in different shapes and angles. It is important to consider the colour of any equipment. Colour needs to be considered in clients with Autistic Spectrum Conditions as certain colours can be over or under arousing. The shape and size of the spoon is also important as flat spoons support with lip clearance. If the spoon is too large, lip clearance and jaw control is impaired.

Preparation

Communication difficulties mean that people with  Autistic Spectrum Conditions and/or learning disabilities are not always able to communicate their wants and needs, hunger, thirst and food preferences. Storyboards and visual choice boards can be used to support people in expressing their choices. It is also important that the person is prepared when a meal time is about to begin. This can be achieved by explaining that a meal time is about to start, telling the person what they are having to eat by showing them a photograph or encouraging them to be involved in food preparation. It is also important to ensure that all food presented is the right temperature.

Eating and Drinking Guidelines

After a comprehensive eating and drinking assessment has been carried out, the Speech and Language Therapist will put guidelines into place. These cover all areas of eating and drinking and are accessible to members of staff and family who support people with Autistic Spectrum Conditions and/or learning disabilities at meal times. It is imperative that these are adhered to in order to keep the people we support safe when eating and drinking.

Conclusion

Dysphagia is more prevalent in people with a learning disability. It is therefore extremely important that the awareness of Dysphagia is raised in order to keep people safe whilst eating and drinking.

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