13 Learning difficulties and autism
Although the term learning disability is widely used, people who are themselves affected prefer the term ‘learning difficulty’ (Northfield 2004, DoH 2001), but this change in terminology has yet to be widely adopted, as can be seen from the quotes and references used throughout this chapter.
Currently there are over 1.5 million people in the UK with diagnosis of a learning disability (Mencap 2010a). Statistically it is difficult to ascertain the number of people affected by autistic spectrum disorder (ASD) in the UK due to lack of data, but it is thought to be about 1% of the population, both children and adults (Brugha et al. 2009, Green et al. 2005). Comparable figures for the USA estimate that 1 in 110 children have a diagnosis of ASD, a prevalence of 1% (Centers for Disease Control Prevention, 2007).
Learning disability is not a mental illness (Mencap 2010b). This term can cover a broad range of disabilities or difficulties with which a person may present (BILD 2007). Founded on the belief that people with learning difficulties are people first, learning difficulty can be defined as a significantly reduced ability to understand new or complex information or to learn new skills (impaired intelligence), with a reduced ability to cope independently (impaired social functioning) and which started before adulthood with a lasting effect on development (Department of Health (DH) DoH 2001).
People with learning difficulties have poorer health and are more likely to die prematurely than the rest of the population (DH DoH 2008). Health-related conditions that may coexist with the diagnosis of learning disability include Down’s syndrome (a lifelong genetic disorder that causes delays in development and learning (Mills 2007)), cerebral palsy, epilepsy, autism and Asperger syndrome (Mencap 2010c).
The National Autistic Society (NAS) 2009a explains Asperger syndrome (AS) as a form of autism (see below). Although there are similarities with autism, people with Asperger syndrome have fewer problems with speaking and are often of average, or above average, intelligence. They do not usually have the accompanying learning disabilities associated with autism, but may have specific learning difficulties including dyslexia and dyspraxia, or other conditions such as attention deficit hyperactivity disorder (ADHD) and epilepsy. People with AS can find it harder to read signals such as facial expressions and body language which most of us take for granted. Thus they find it more difficult to communicate and interact with others, which can lead to high levels of anxiety and confusion, frustration, anger, depression and a lack of self-esteem.
Autism is a lifelong developmental disorder characterized by impaired social interaction and communication, severely restricted interests and highly repetitive behaviour (Brugha et al. 2009). ‘Spectrum disorders’ is the collective term used, as the symptoms can present with varying degrees of severity (Autism Society of America 2006). Further classifications used are high-functioning autism, low-functioning autism, mild, moderate, severe and autistic traits or tendencies (Bogdashina 2006).
Autism can also occur in association with other conditions such as metabolic disturbances, epilepsy, visual or hearing impairments, Down’s syndrome, dyslexia, cerebral palsy, attention deficient disorder and ADHD (Bogdashina 2006). Other health problems that may be experienced by children with autism include sleep problems, eating difficulties, bowel problems, and difficulties developing motor skills such as holding a pencil (NAS 2009b).
Some people with autism have severe learning disabilities, and some are non-verbal. They may also have abnormal sensory perceptions, for example being hypo- or hypersensitive to tastes, smells and sounds (NAS 2009c, Royal College of Psychiatrists 2004), each altered perception possibly fluctuating between hypo- and hypersensitivity (Autism & Practice Group (APG) 2007).
However, some people with autistic tendencies are very high achievers and their oddness may show up only in their preference for being alone, lack of empathy and single-minded pursuit of their own interests (Wing 1997). Many very successful academics are thought to fall into this category (Carter 1998).
Michael, aged 60, is non-verbal with mild to moderate learning difficulties and challenging behaviour which could involve attacking other people and throwing things and furniture. He was learning to adapt from having spent 30 years in an institution before coming to the group home.
The first month of meeting was spent walking outside together for him to get used to the therapist. Initial sessions were only 15 minutes long, with limited eye contact, as he did not like this. Gentle, relaxing strokes were used on his feet, avoiding any sudden movements. Gradually his hands were touched to introduce closer contact. After another month, sessions up to 30 minutes and occasional eye contact were possible.
The following sedative essential oils were used one at a time in 1% dilution:
Touching, tasting and smelling – everyday experiences – inform us about the world we live in, each experience leading on to the next, assisting in learning and development. Those with autism may not be able to process the information in the same way, leading to ‘abnormal’ behaviour as the affected individual struggles to cope with altered perceptions (Table 13.1).
Table 13.1 Examples of behaviours that might result from the altered sensory perception of autism
| Hypersensitivity | Hyposensitivity |
|---|---|
(Autism and Practice Group 2007, Sensory Issues in Autism, p. 8)
People with autism might display what are known as autistic traits, e.g. rocking, flapping hands, or pressing fists into their eyes when experiencing a hypersensitive reaction to a sensory stimulus. This is because they are trying to induce different sensations in an attempt to block out the pain or calm themselves down. When autism causes hyposensitive sensory perception, the affected individual might bang objects/doors, seek out noises such as the vacuum cleaner, prefer tight clothing or self-injure in an attempt to cause sensations to help their brain get more information from the outside world. Aromas can be overpowering, so can background noise, and touch can be excruciating;
‘I was frightened of the vacuum cleaner, the food mixer and the liquidizer because they sounded about five times as loud as they actually were.’
(White 2007, cited in APG 2007, p6.)
Contending with smell, noise and touch can cause a person to go into hypersensitive overload, leading to sensory shutdown (APG 2007). Although aromatherapy might not seem to be the obvious therapy choice for anyone with ASD, when used with discernment and care by a responsible, professional therapist, it can provide valuable support.
The Disability Discrimination Act (2005) and Mental Capacity Act (2005) highlighted the health requirements of people with a learning disability or autism. It should never be assumed that people cannot make their own decisions, simply because of their problem (DoH 2003), and consent – where the person is able to give it – should be sought before commencing an aromatherapy intervention.
Children 16 years or older and competent to do so, or under 16 years and deemed ‘Gillick’ competent, can legally consent to their own treatment (DoH 2009). Gillick competence is a term used in medical law to decide whether children under 16 are able to consent to their own medical treatment without parental permission or knowledge (Wikipedia 2010). Those with parental responsibility may consent to treatment for those under 16 (DoH 2009). Written consent is not always necessary, but the therapist should always record what consent was given and by whom.
Particular care should be taken to ensure that children and adults with learning difficulties or autism are given every opportunity to communicate their needs, wishes and feelings regarding care and treatment.
If an adult is not competent to consent, then the relatives/carer/key worker should be involved in the decision – when the treatment is in the client’s best interest, it is lawfully possible to provide it (DoH 2009).
Although there is little research evidence, there is a consensus of opinion that aromatherapy has a positive effect. The individual parts of an aromatherapy treatment – the relationship between client and therapist, touch/massage, essential/carrier oils and olfaction – can each provide support, and the synergistic effect of the whole package can produce significant physical and psychological benefits. Research has revealed that aromatherapy can have profound effects on the mind by affecting the autonomic level of the cognitive part of the brain (see Ch. 7); this can be seen in a study with older adults, linking postural stability to the olfactory system, where some changes in stability were noted (Freeman et al. 2009 (see Box 13.1, Broughan 2005; also Ch. 7).
Box 13.1 Olfactory stimuli and enhanced postural stability in older adults (Freeman et al. 2009)
This study tested the effect of olfactory stimuli on the postural stability of 17 older adults. The subjects were randomly exposed to the odour of Lavandula angustifolia [lavender] or Piper nigrum [black pepper] or the sham (distilled water) while standing with feet slightly apart on a force plate which measured movement of the body’s centre of pressure. The odour was presented to the subject on a spill which had been dipped in one of the oils or the water and held a few centimetres from, but not touching, the right nostril. They stood for 1 minute with eyes open, looking straight ahead with the odour stimulus, then a 2-minute break during which they sat and relaxed. The spill was re-dipped in the oil or water and presented again for 1 minute, during which time the subjects were asked to stand on the force plate with eyes closed. Subjects also underwent the same protocol with no odour exposure. The study found that with eyes closed, olfactory stimulation with either Lavandula angustifolia or Piper nigrum significantly reduced the velocity of postural adjustment, suggesting that olfactory stimulation may improve postural stability in older adults.
Essential oils can have powerful effects on the body and the nervous system, evoking memories, changing human perception, altering behaviour, reducing aggression and agitation, improving communication and activating cognitive responses (Buck 2007, Cook 2008, Ouldred & Bryant 2008), and it is important that unadulterated essential oils are used for the best therapeutic effect and to avoid the risk of adverse reactions.
The choice of oils and their mode of use should be decided upon as for any other client, but with special attention to the complexity of the individual’s particular needs, bearing in mind known and potential medical conditions, including acknowledged contraindications to existing drug regimens and possible side effects.
Touch is a vital sense and a valuable form of communication, and is a significant aspect of our daily lives. The deprivation of touch between parents/carers and the child/adult with learning difficulty/ASD can have dramatic impacts on the development of bonding and relationships.
Herbert (2002) states that touch is one of the first senses to develop – within the first 8 weeks of fetal life. It is related to both physiological and psychological development, and children who are deprived of loving touch can develop serious emotional and psychological disturbances (Blackwell 2000, Field 2002a, b). For people with learning difficulties and ASD experiences and perception of touch are often very different from those unaffected by these disorders. Touch may frequently be functional rather than loving, e.g. the touch they feel is related to personal care: washing, dressing, being fed, being moved in and out of a wheelchair or bed.
Individuals with ASD often have a distorted perception of touch.
The impaired touch communication experienced by some can cause difficulties both for the affected individual and their relatives/carers. Parents of children with autism describe their distress and ‘hurt’ in response to the ‘aloof’ nature of the child, where natural parenting instincts such as spontaneous cuddling are limited (Cullen & Barlow 2002).
Where a person is not able to communicate verbally or to understand facial expressions or body language, it is clearly difficult to obtain an accurate understanding of his/her feelings or response to touch (Baron-Cohen, 2004). However, aromatherapy with massage has been said to promote more effective communication with this client group (Armstrong & Heidingsfeld 2000, Cullen & Barlow 2002, Thompson 2002 – see Case 13.2).
Case 13.2 Agitation (Armstrong and Heidingsfeld 2000)
Kate is aged 35 with autism. She self-mutilates, rocks and head-bangs when unhappy or frustrated.
Initially, gentle hand massage was given, avoiding eye contact. At the third visit, sedative essential oils – Lavandula angustifolia and Citrus bergamia [bergamot] – were introduced by holding each aroma to her nose on a spill, and Kate was encouraged to demonstrate a preference. She showed her choice by pointing with quick finger movements at one of the spills. Over several months, more oils were introduced – Pelargonium graveolens [geranium] (relaxing) and Citrus aurantium var. sinensis [sweet orange] (calming); up to three oils of her choice were included at each treatment.
Some clients with autism may prefer deeper massage pressure, as this can help block out unwanted external stimuli that may cause a hypersensitivity overload (Ellwood 2002). Conversely, some clients with learning difficulties prefer simple effleurage and stroking techniques (Anderson 2008). Whichever form is preferred, careful use of touch and massage with essential oils can help develop trust and build up tolerance to touch (Armstrong & Heidingsfeld 2000, Cullen & Barlow 2002).
It may be inappropriate at first to treat a client with a full body aromatherapy massage; often this is unlikely ever to be suitable, but inhalation of essential oils can be beneficial. It is best to take a considered approach, introducing single components of aromatherapy one at a time to reduce the risk of inducing fear or over-sensitization.
Initially spend time just getting to know each other. Each time you meet, offer a spill with a drop of essential oil on it, using the same oil for the first two or three visits – preferably one with a gentle aroma. Discover whether the client has any physical problems that might be helped by essential oils, and select your gentle oil from these – the aim is to find an aroma which is acceptable to the client. It is important to allow the client the opportunity to express a preference for one essential oil – or blend – over another, as it enables him/her to exercise personal choice and independence, thereby enhancing the end result. Having selected the essential oils most helpful to the person concerned, the way in which these are presented is of great importance. Always offer aromas one at a time – never more than three in one session, noting any reaction carefully. Those preferred by the client can also be vaporized. Armstrong and Heidingsfeld (2000) used aromatherapy bubble baths, flower waters and creams for many months with a deaf/blind client for her enjoyment and to enhance her femininity, before progressing onto any form of massage.
A blend can be used once each individual oil has been approved – it will be a new aroma to be experienced.
These should be introduced gradually to accustom the client to the sensation of oil on skin. The client’s favourite essential oil should be used in a carrier oil for the first contact. The hands are usually the best place to start, as these are easily accessible without causing a great deal of stress. To be able to hold and gently stroke a hand may take more than one visit, after which 5–10 minutes’ massage of the hands may be as much as a client can tolerate at first. The treatment should not be lengthy, as it may be counterproductive if the client’s attention starts to wander or he/she becomes frustrated. Once touch is accepted, a blend of two or three essential oils can be introduced, when the synergy enhances the treatment.
After a simple hand massage has been accepted, the lower arm could be included, but it is important not to force the pace, even if progress seems slow. Some clients will find the feet and lower legs less threatening than hands and arms, as the therapist will not be in such close proximity.
As one of the aims of treatment is to relax and calm the client, music could enhance the aromatherapy experience; singing nursery rhymes, especially with children, may help increase enjoyment of the session.
People with learning difficulties and autism often favour regular routines, so where possible, visits should be made at the same time and day of the week, in the same environment and with the same music (if enjoyed). Wearing the same clothes and having a drop of the client’s favourite oil on your wrist is equally helpful.
The preferred essential oils and music can also be used by the client between sessions. Olfaction is powerfully linked to memory and can be really useful to help a client evoke memories of the calm experienced during a therapy session if they should become agitated, stressed or distressed between sessions.
Case 13.3 Social interaction and positive touch
P. is a 60-year-old man who has Down’s syndrome – a genetic abnormality that causes physical and intellectual impairments. He has good verbal communication and understanding; enjoys interacting with others but sometimes finds this difficult, isolating himself from others in the house. He lives in a housing association care home with five other individuals and various care staff who provide 24-hour care and support. He has his own room, in which he spends a lot of time on his own.
P enjoys massage on his legs and feet using a base with 1% of Lavandula angustifolia [lavender] for its pleasant aroma and its antiseptic, antiviral, bactericide and carminative properties. He does not like other strong smells and asks only for this. The massage consists mainly of gentle effleurage and can last up to 30 minutes, on a weekly basis. P likes the therapist to follow the same routine, finding it really difficult if something is changed. He does not like change – this can lead to him becoming upset, when he may challenge verbally and walk off. He likes to sit in the lounge with the other residents in the same place each week. He will engage with the therapist, talking and telling them about the activities he has done during the week.
The treatment provides P with positive touch and one-to-one time; at the end of each session he will hug and thank the therapist. He appears to find this comforting and is very settled and relaxed after the session, staying with the rest of the residents for the remainder of the evening. Staff comment on how much more relaxed and calm he is after the sessions.
Disturbances during treatment should be kept to a minimum (sometimes difficult in a group setting), and staff and residents should be informed when therapy is about to take place.
As with any client, a full medical history must be obtained and recorded, including any medication used and any precautions or contraindications concerning current medications and treatments. Epilepsy (and therefore antiepileptic medication) is more common in people with a learning disability than among the general population (Searson 2008). Although there is little evidence to suggest that antipsychotic medication is effective for the challenging behaviour of people with learning difficulties (Benson & Brooks 2008), unfortunately many individuals will be receiving it. These medications have implications in the choice of essential oils – some antipsychotics may be photosensitizing and some medications to reduce anxiety may lower blood pressure; however, there is no evidence to demonstrate that any essential oil used in aromatherapy has ever induced a seizure. Hyssop may be the only oil prudent to avoid, although it would not in any case be used when treating people with autism or learning difficulties (see Table 13.2).
Table 13.2 Oils high in phenols, aldehydes and ketones – avoid or use with caution
| Phenols | |
| Aldehydes | |
| Ketones |
Because of the large range of essential oils available, it is not necessary to include any that might sensitize the skin or have a possible toxic effect on the nervous system. Photosensitizing essential oils pose no problem unless the client is going into direct sunlight within 2 hours of the treatment – a sunbed is definitely unwise for anyone. Generally, essential oils high in terpenes,
Case 13.4 Agitation and poor sleep
H is a delightful 5-year-old who has leukodystrophy (Aicardi–Goutieves syndrome), a progressive neurological condition. She has globally delayed development, is unable to sit without support and gets frequent urine infections. Her limbs can become very stiff, her hips are painful as they are out of joint, and she is a poor sleeper.
H has aromatherapy massage using grapeseed oil with 1% dilution of one of the essential oils below to her back, arms legs, tummy, neck and shoulders. Before starting the massage, the blend is wafted under her nose to see if there is a positive reaction – a smile. Her mother and the therapist sing nursery rhymes or play little games to keep her engaged during the massage. When she is enjoying the massage, she stays quite still and smiles a lot, but when she has had enough she starts to wriggle or moan. Massage time is between 20 and 40 minutes, depending on H’s mood. Essential oils to induce sleep were used:
alcohols and esters are suitable and will address both emotional and physical discomfort. Essential oils with a high oxide content can be useful (use with care if the client is asthmatic) – Eucalyptus smithii and E. staigeriana are the appropriate oils to use, as they are gentler in action and aroma than other eucalyptus oils.
For clients with learning disabilities and autism, the use of essential oils and massage can help build bridges of communication, add choice and have a positive and beneficial influence on an individual’s life, providing relaxation where anxiety and agitation are often commonplace. There are now plans to reform the way care is provided for these people (NAS 2009d), which may result in complementary and alternative therapies bridging the gap often left when conventional interventions are used (DoH 2009).
In spite of the largely anecdotal nature of aromatherapy’s reported successes on people with learning disabilities and autism, it is clear that it would be worth holding properly conducted trials, especially for adults, whose habits, obsessions and survival techniques have already been ingrained. Not only could more be discovered about the benefits of aromatherapy, but much could be learned about the nature of the disabilities themselves. Treating this client group with aromatherapy is a privilege and can be wonderfully rewarding – not only for the client but for the therapist and carers too.
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