Individuals with ASD may have problems in organising themselves and be clumsy or dyspraxic. These factors impact on their ability to dress themselves independently or to prepare a simple meal, for instance. Sensory issues may also affect the type of clothing that can be tolerated.
The fact that these problems may co-exist with high levels of intelligence can puzzle parents and professionals alike.
Practitioners need to help carers understand that:
Parents/carers may ask for assistance with problems arising in the area of independence.
Many children with ASD appear prematurely independent because they will help themselves rather than ask (e.g food/drink). They may also appear ‘to know their own mind’, by being particular about what they wear or eat.
Some develop a form of ‘learned helplessness’ where they learn to do less and less for themselves, requiring increasing levels of physical and verbal prompting to get them motivated. This may happen in the home where pressure to get ready in time results in parents doing increasingly more for their child just to get them dressed or fed. It may also happen at school, especially where a teaching assistant is assigned to ‘support’ the child on a 1 to 1 basis.
Individuals with ASD may develop problems such as constipation because:
There may also be problems in using smelly and messy toilets in school or in public and this can lead to ‘holding onto’ faeces. There may be other problems related to fear of the toilet bowl, the sound of the flush, the smell of the faeces or just the experience of ‘letting go’.
Problems with constipation or diarrhoea may lead to further distressing problems of smearing or even eating faeces (Wheeler, 2003).
Children with ASD commonly have problems with sleeping and these problems often persist into adulthood. If their sleep problems were addressed, their functioning during the day might be enhanced and the incidence of problem behaviour reduced. The organisation ‘Sleep Scotland’ states that a third of its referrals are from children and adults with ASD (www.sleepscotland.org).
In childhood, problems may relate to getting to sleep, in sleeping in their own bed, in staying asleep and in waking early. This results in very little sleep for the child, and consequently, in very little sleep for the family.
Adolescents and adults may develop routines of working at night and this may be owing to their feeling more awake at this time. Alternatively, being up at night may allow the individual to avoid social situations, such as being around family at mealtimes, and leisure time.
As adults, people with ASD frequently have problems sleeping. They often exist on very little sleep (only 2 to 4 hours a night for some children and adults with ASD) but seem at the same time to be suffering from the symptoms of chronic sleep deprivation – adding to their problems of stress.
Often the problem for children with ASD is one of staying in their own bed, rather than with sleep itself.
Where a child is still sleeping with the parents, and this is a problem for them, a behavioural programme of graded change has been shown to be effective (Howlin & Rutter, 1987).
Many children with ASD eat very restrictive diets, although most seem to thrive. However, there are extreme cases where diets are extremely restrictive, to the point of risking health. Read about Simon in this related child case study.
There are individual preferences for types of food, ranging from totally bland, to highly spiced, and some individuals will only eat foods of certain colours or types.
See Case Study: Older Child - Joshua
Texture is the main factor in whether or not food is acceptable, especially foodstuffs with combined textures (for instance, a mixture of wet and dry foods).
http://www.scottishautism.org/family-and-professional-support/information-resources/eating/
Vision can be very acute. This can include sensitivity to particular kinds of illumination and colours.
This can include
See Case Study: Younger Child - Honey
Some people with reduced visio spacial awareness on the other hand may experience trouble figuring out where objects are, as they just see outlines.
This can include:
The person might sit for hours moving fingers or objects in front of the eyes.
There can be sensitivity to different kinds of sounds. This can include noisy shopping centres and machinery in the distance. In the clinic, this can include the sound of a busy waiting room and the sound of medical equipment or hand driers for example.
Individuals with hyper accusis often cover their ears when the noise is painful for them, though others in the same room may be unaware of any disturbing sounds at all.
People with hypo accusis may ‘seek sounds’. They often create sounds themselves to stimulate their hearing. This can include banging doors, tapping things, tearing or crumpling paper and making loud rhythmic sounds.
This can include:
There can be extreme sensitivity to touch. Clothing problems are very common in this group, with tags and scratchy materials being frequent offenders. Many people with ASD find labels in clothes very annoying. Many cannot tolerate zips or buttons on clothing. Small itches and scratches can feel extremely uncomfortable or even painful to some people.
Problems may arise in respect to:
There can be sensitivity to the physical proximity to others and the perception of touch, pressure, pain and temperature can be intensified. Some individuals with ASDs pull away when people try to hug them, because they fear being touched. Because of their hyper tactility, even the slightest touch can result in a panic attack. Parents often report that washing their child’s hair or cutting nails turns into an ordeal demanding several people to complete it. Some people with increased tactile awareness overreact to heat/cold, avoid wearing shoes, avoid getting ‘messy’ and dislike foods of a certain texture.
Those with reduced tactile awareness seem not to feel pain or temperature. They may not notice a wound caused by a sharp object or they may seem unaware of a fractured bone. They are prone to self-injuries and may bite their hand or bang their head against the wall to stimulate their senses. They like deep pressure, including tight clothes, often crawling under heavy objects. They may hug tightly (although reject being hugged) and enjoy rough and tumble play.
“Being in close proximity to others is a particular problem for some people with Asperger’s and deliberately arriving at lessons early in order to capture a seat on an aisle or in a corner was a common strategy.” Sainsbury (2000) p. 102
People with vestibular hypersensitivity or hyposensitivity often experience extreme differences in their reaction to their environment.
Vestibular hyposensitivity, can lead to:
Vestibular hypersensitivity can lead to:
Persons with ASD can be sensitive to tastes and can appear to be 'fussy' in their choice of food. They may prefer bland and uncomplicated tastes or, alternatively, eat extremely hot, spicy or bitter foods.
“Sensory problems with taste, smell and texture could make certain foods intolerable and this could cause enormous problems in school where children were meant to finish everything on their plate.”
- Sainsbury, (2000) p. 105
See Case Study: Younger Child - Simon
Some individuals with hypersensitivities cannot tolerate how people or objects smell, though their carers can be unaware of any smell at all. They may avoid smells, move away from people and sense of smell may be one factor in insistence on wearing the same clothes all the time. For some, the smell or taste of most food is too strong, and they reject it no matter how hungry they are. They are usually poor eaters, gag/vomit easily, eat only certain foods and are reluctant to try new foods.
Other individuals might chew and smell everything, using this as a main information channel. They may identify by smell and react badly when carers, for example, change perfume/after-shave.
Some smells can be overpowering. There may be a very strong reaction to:
People with ASD using smell as a main information channel may:
The person may not appear to feel pain or show distress in relation to levels of pain which others would find unbearable. There may also be a long (hours) delay in their reaction to a ‘painful’ stimulus. This can extend to temperature control. On the other hand, the person can have a very acute sense of pain and may be very fearful of injections. Sometimes, an apparent lack of responsiveness to pain is in fact a communication and social problem; individuals with ASD may not see the point of calling attention to their distress or may even decide not to do so in order to avoid the further uncomfortable (even painful) experience of being physically comforted.
Auditory stimulation may cause a reaction which is equivalent to that produced by pain.
“The lack of reaction to pain can prevent the person learning to avoid certain dangerous actions, causing frequent trips to the local casualty department”
- Attwood (1993) p. 137
See Case Study: Adult - George
Sensory differences are likely to remain throughout a person’s life, although the form that they take and the individual’s own coping mechanisms may vary widely.
More able adults may well have developed strategies to help them cope or compensate. For instance, individuals with ASD who experience light sensitivity now commonly use tinted spectacles.
Patients with ASD may make specific requests to enable them to function in the appointment room. They may require that the environment is adjusted for them and these adjustments will be critical for their functioning.
For some adults on the spectrum, the stress involved in attending a surgery will simply be too much and they may require a home visit to receive any medical attention.
Adults who have sensory processing difficulties:
Sensory issues can have an effect on behaviour. Hyper and hyposensitivity can lead to withdrawal from social interaction and communication and it can increase stereotypic behaviours.
For example:
The sensitivities to stimuli mean that a person with an ASD can easily reach a point of sensory overload. This can occur in situations that may not cause any concern to other people. The overload comes when the person has taken in more than they can cope with.
Sensory sensitivities and the dangers of sensory overload can lead to the person ‘shutting down' and withdrawing.
• “... The only everyday sensory experience that neurotypical people have that is remotely similar seems to be ‘rush hour’. Like computers overloaded with information and required to process too much at one time, we often ‘crash’. Some people shut down and ‘tune out’ completely."
- Sainsbury (2000) p. 101
Bogdashina (2003) points out that individuals with ASDs often describe ‘stims’ as defensive mechanisms from hyper- or hyposensitivity. Sometimes individuals might engage in these behaviours to suppress the pain or calm themselves down (in the case of hypersensitivity).
Other times, these behaviours can serve the function of arousing the nervous system and getting sensory stimulation from the outside (in the case of hypo sensitivity), and sometimes to provide themselves with internal pleasure.
Examples of ’stims’:
Temple Grandin argues that learning to recognise sensory overload is very important. It is better to prevent it than to ‘deal with the consequences’. Individuals with ASD may need a quiet place where they can go to ‘recharge their batteries’ from time to time.
A ‘First Aid Kit’ (for sensory overload) could be available. This kit could contain items such as a squeeze ball, distraction wands, attractive shapes and rattles. Each child will vary in their preferences. Practitioners (where there is advance warning) might consult with parents/carers about practical steps that can be taken.
My Experiences with Visual Thinking Sensory Problems and Communication Difficulties by Temple Grandin, Ph.D.
This topic will cover sensory factors in people with ASD and how those might impact on behaviour- both generally and in the clinic setting.
“Pain response may be altered; high or low pain thresholds. When receiving dental treatment the person’s individual pain threshold must be considered”
Both hyper and hypo-sensitivity to different sensory stimuli have been reported in ASD (Bogdashina, 2003, Leekam et al, 2007), but not all individuals with ASD will experience sensory problems. Sensory processing issues are often associated with ASD although these do not need to be present for a diagnosis to be made. The range of differences and the way they are experienced will vary from individual to individual.
There is no consensus about whether sensory differences arise directly from ASD or whether they are a secondary consequence of perceptual problems in categorising and making sense of the world around them. Whatever the case, personal accounts show that they are a dominant feature of the experience of those with ASD. Unusual sensory processing may not always cause difficulties, but instead may be a skill in certain circumstances (acute hearing in a musician).
Sensory processing is often more problematic when the environment is not adapted.
A person with autism can therefore be hyper sensitive at one point in time and then hypo sensitive at another. Bogdashina (2003) describes this as inconsistency of perception.
Reaction to pain may vary from almost complete insensitivity to apparent “over-reaction” to the slightest knock (Jordan & Powell, 1995)
When individuals are hypersensitive, they are very sensitive to certain sensory experiences. Sainsbury (2000) describes this as the volume of a particular sense being turned up too high.
Examples of Hyper-sensitivities:
When a person is hypo sensitive the person does not react to stimulation as would be expected. There can, for example, be minimal reaction to pain and temperature. Sainsbury (2000) describes this as the volume of a particular sense being too low.
Examples of Hypo-sensitivities:
These sensory differences have led to many children and adults with ASD having been misdiagnosed as having visual and/or auditory impairments.
Sensory factors can interfere with daily living in many people with ASD. It can range from the person not recognising a familiar environment if approached from a different direction or finding it difficult to do something in a noisy, crowded room. The person might find it very difficult to understand instructions if more than one person is talking.
Interference with daily living:
Practitioners working with a person with ASD, need to observe carefully to check for possible sensory difficulties. By looking at how the person reacts, it is possible to reconstruct and assess the person’s differences in various sensory channels.
The individual:
Individuals with autism, like people in the general population, will face many changes during their lives. People with autism may have more difficulties managing change and transition during their lives. Individuals with autism prefer predictability; they feel more comfortable when situations are familiar.
There are a number of changes that may affect the individual across the lifespan:
Transitions may be:
Individuals with autism may be limited in their ability to manage changes and transitions. Specific changes and transitions are challenging for particular individuals and not for others. Other factors may affect the person’s successful transition, such as personal characteristics, mental health and environmental factors.
Practical strategies:
Understanding social interaction and making relationships is a core difficulty in ASD. Some individuals manage to relate to one other person but get into difficulties when required to do so with two or more people at one time.
Individuals with ASD vary widely in their interest in others and their willingness to join in social activities.
Many students with ASD are bullied by peers at school and this can lead to low self esteem and depression as well as a refusal to go to school. Desire for friends may be acute, especially among the most able group with ASD.
Parent/carers may seek help from practitioners in developing friendships for the child or young person with ASD.
ASD impacts on the development of social and sexual behaviour. ASDs are disorders with a strongly genetic component; it is likely that there are between 3 and 20 genes involved, in conjunction with environmental factors also in some cases. Genetic counselling for the family and the individual with ASD may be helpful.
There is much research underway into the genetic basis of ASD, and some sites on chromosomes have been implicated in more than one study. However, all but 3 chromosomes have been implicated in different studies so there is still a long way to go in identifying the specific genes involved.
Sexual feelings at puberty may lead to a positive interest in others (sometimes for the first time) and this motivation can be built upon, to increase social skills and develop friendships. However, problems may also arise around puberty or later when sex education may be misunderstood or when a sexual interest becomes obsessional.
Difficulty in forming relationships (and sometimes lack of opportunity to do so) may mean that masturbation becomes the only outlet for sexual feelings. This may be a normal healthy solution for the person with ASD and many successful individuals with ASD manage their life very successfully without having sexual relationships with others (Grandin, 1986).
For a few, however (and it is the problems that are liable to be brought to practitioners by parents/carers or the individuals themselves), masturbation may become a problem in that it overrides other interests and activities and may be done in public places.
Masturbation may be a response to boredom so distraction and enjoyable alternatives are always worth trying, although people with ASD are understandably assertive of their rights to experience sexual pleasure, whether or not this is in the context of a relationship.
Masturbation can be a satisfactory alternative to a relationship, as long as the person with an ASD knows how to achieve orgasm in this way, and parents/carers do not have religious taboos. As with personal care, the person needs to be taught where and when it is appropriate to engage in this activity.
Where there is a need for masturbation, it is important that the individual is given clear visual instructions (as with the teaching of all skills), including the need for privacy and hygiene.
Some individuals with ASD will follow a religion or have been brought up with certain ethical and moral standards of behaviour and there needs to be sensitivity to these when ‘rights’ to a sexual life are being explained.
The same notions of privacy and modesty should apply here as in the teaching of other self-care issues.
However, sexual activity is more surrounded with social and cultural taboos than other daily activities and people with autism need to understand about their ‘right’ to enjoy a full and active sex life but also to understand that others have their own rights. They need to know what is acceptable and unacceptable both legally and socially within the social contexts in which they are situated.
They need to enjoy positive experiences with others but also have support to deal with times when their overtures are rejected. They need to understand this as a fact of life and not to see it as a result of their autism.
Support is needed in the realm of safe use of the Internet, such as Internet dating sites. Parents and carers need to be guided in supporting individuals with ASD in issues of consent, appreciating differences in age presentation etc
See Case Study: Older Child - Jenny
Some individuals with ASD do form long-lasting relationships with partners and have children.
Books, such as those of Aston, based on her counselling experience with couples where one or both partners have Asperger syndrome, are beginning to deal with sexual and relationship problems in a direct and helpful way.
Individuals may have strengths or resources to manage transitions; internal; interpersonal; organisational. Individuals may vary in their capacity to make use of available resources. Practitioners need to be aware of ASD.
ASD impacts on the development of social and sexual behaviour. ASDs are disorders with a strongly genetic component; it is likely that there are between 3 and 20 genes involved, in conjunction with environmental factors also in some cases. Genetic counselling for the family and the individual with ASD may be helpful.
