By Sheena Anderson Specialist OT

Sheena Anderson is an Occupational Therapist with many years of experience of working with those with sensory integration disorder. She also has a close family member who has Down’s syndrome and here offers a useful description of the range of ways sensory integration can present and how important regulation is for learning and behaviour. This is often an overlooked part of understanding the learning and behaviour profile of a person with Down’s syndrome and can make a very useful contribution to their development and wellbeing.

What is Sensory Processing also known as Sensory Integration?

These terms describe the processing, integration and organisation of sensory information that comes from our bodies and our environment. It is how we experience, interpret and react to (or ignore) information coming from our senses. It is critically important in all things that we need to do on a daily basis – getting washed/dressed, eating and using the bathroom, moving around, socialising and learning/working.

The information we receive from our senses include –

• Sight – visual system
• Hearing – auditory system
• Touch – tactile system
• Taste and smell (often linked) – oral/olfactory systems
• Proprioception (awareness of our body and position) and – Vestibular – (awareness of movement, balance and coordination)
• Interoception – awareness of our internal functions – hunger/not hungry/have eaten enough, needing the toilet/not just at the last minute, tired/not tired, feeling warm/cold, emotions.

In many of us, the development of sensory processing occurs when we are young through the usual experiences involved in child development. For some, if these experiences are more limited (for whatever reasons), then sensory processing will also be less well developed.

Sensory processing problems are relatively common in individuals with Down syndrome.

As with anyone who experiences sensory processing difficulties (SPD), they may often relate more particularly to specific systems, but each person is unique and it should never be assumed that these difficulties would be the same from one person with Down syndrome to another.

It is now common for people with SPD to have these difficulties described under the diagnosis of ASD – Autistic Spectrum Disorder, but any individual can have sensory deficits without the additional diagnosis of ASD.

What might be noted relating to the different sensory systems in an individual with Down syndrome – 

• Auditory – People with Down’s syndrome may be sensitive or reactive to loud/sudden noises or have a problem sitting within a group where many people are speaking – even a social group they want to be part of. This might be despite often wanting to have their own music or TV volume loud.
• Tactile – Sensitivity to different textures in clothing, the feel of labels etc. can feel uncomfortable, not liking having creams applied, hair washing/brushing, showering and drying afterwards, new items of clothing or shoes. A preference for a bath over a shower is common.
• Oral/taste – this system links into the tactile one where it may be hard to eat different/new foods because of the way certain foods feel in the mouth rather than due to their taste. This may be influenced by the smell of the food – and diets may be restricted as a result. Often it may be noted that the individual prefers to eat soft food rather than chewy or vice versa. They may eat all of one food group type first before moving on to the next rather than mixing e.g. all veg, then potatoes, then meat. Food difficulties can result in very picky eating and avoidance of things important in our diets.
• Proprioceptive/vestibular – People with Down syndrome often have low muscle tone which makes it hard for them to process information coming into their bodies through muscles and joints. The effect on the vestibular system (sense of balance) reduces the ability to develop coordination, balance and the spatial awareness needed to move on uneven ground or up and down stairs. The proprioceptive system helps us judge the amount of force needed for different activities/skills and this can be a common problem. There are obvious safety considerations attached to both of these e.g. too much food put into the mouth and not enough chewing risking choking or digestive issues, falling on uneven ground or slopes/stairs.
• Interoception – This system accounts for many difficulties noted in people with Down syndrome where the signs may appear to be contradictory so worth describing in a bit more detail.

Eating/hunger – some individuals do not realise they are hungry until they start eating and then will eat large quantities and not process when they have had enough or they may need encouragement to eat more regularly. As above, this may have a safety implication, and can contribute to being over or under weight. It may lead to other health considerations relating to what is included in the diet.

Toileting – often the bowel and bladder are not giving enough information about how full or empty they are. This can lead to accidents or that last minute dash to the toilet. Occasionally, it can contribute to issues with bowel impaction where the person does not like the ‘feel’ of having a bowel movement and will hold it in.

Body heat – this can be hard for an individual to regulate – not feeling the temperature correctly and wearing inappropriate clothing for different seasons. It again may have a health implication particularly in cold weather with extremities – hands and feet due to reduced circulation which is not uncommon in those with Down’s syndrome.

Tiredness – often not processed accurately by the body relative to daily activities and sleep patterns may need to be monitored. This can also link to a spatial difficulty with understanding time in general.

Any difficulties with being out of ‘sync’ relating to the basic body functions can lead to increased or erratic emotional behaviours.

Sensory Regulation – this is what we need to aim for, all of us fluctuate maybe slightly above or below the ‘just right zone’ but can efficiently manage our lives physically and emotionally if remaining mostly within that zone. We can increase and decrease our alertness and responses to match different situations and the environment.

When regulation does not happen there are three likely responses triggered by a release of hormones –

Fight – where the person may physically lash out but not necessarily at the correct provoker of the stimulation – whilst it may be the dog barking that has triggered dysregulation, but the lashing out is at the nearest person to them.

Flight – They will run away/remove themselves from the stimulation that they find challenging.

Shut down – The person will stop responding at all being over-whelmed by the sensory exposure. An attention problem or hearing deficits are often questioned and, even occasionally, the potential that it might be a ‘petit mal’ (epileptic type) attack. They may be described as having social problems due to avoiding their peer group. These reactions can vary continually giving others very mixed messages about performance abilities and even lead to blame or labelling e.g. they are deliberately choosing not to be involved/co-operate, both on a functional and social basis.

Relating to all areas of the different sensory processing systems, individuals will then be noted to use sensory seeking – looking to increase the stimulation, or sensory avoidant – looking to reduce the stimulation, behaviours. The confusing thing can be that individuals may fluctuate from one response to another on different days and in different situations. This will often occur when more than one of the sensory systems are involved.

What to do?

Advice and/or treatment for Sensory Processing generally falls within the remit of Occupational Therapists. The background training for OTs will certainly have covered the ability to provide advice and relevant programmes. There is also potential for more extended treatment specific to individual needs involving further OT training qualifications e.g. use of Therapeutic Listening for auditory processing, use of specialised equipment to increase vestibular processing.

All areas of sensory processing difficulties can be ‘managed’ with programmes, some of which may reduce the reaction to various stimulations e.g. improves the sensitivity of the skin with regard to reactions to clothing, reduce the sensitivity in the mouth and allow more variation of food types.

Including specific movement activities involving gross and fine motor skills can be advised that would aim at improving the proprioceptive/vestibular input which would allow more awareness and control of movement and strength needed for different activities. It would also contribute to increased energy levels and safety.

The environment or situation that the young person is in, could also be managed with regard to people being too close, too many people speaking at once, use of ear defenders to reduce volume.

Using visual timetables and talking about the plan for the day or an activity/event can allow that person to prepare themselves for what the experience might feel like and prevent over-reactions that may lead to the various responses described above.

This method can also be used to more successfully manage basics including toileting, hunger, temperature, tiredness all which contribute to emotional stability.

Managing and or improving sensory processing will always enhance the function and emotional stability of general experiences and allow people to live life to the full.