The Impact of ASD

Daily Life Skills

Spectrum means a spectrum; there is a range of impact AND of functioning and this can be different at different times, i.e., the individual is SO able, but finds it hard at times to do the most simple thingIndividuals 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:

  • Organisational difficulties are part of the condition and not ‘laziness’ or a deliberate lack of concentration
  • They can help the child develop independent dressing by using visual organisation strategies (see Peeters, 1997, and TEACCH)
  • Stripping or refusal to wear shoes results from sensory difficulties, not deliberate naughtiness. Chasing a child to try to force the issue will make things worse by encouraging the child to play ‘chase’, or become distressed, rather than comply
  • The child (or adult) can be helped by making clothes and shoes as comfortable as possible (e.g. no zips, buttons, laces, labels) and by gradually desensitising to these
  • Where a range of independence skills is delayed and there is delay in and poor coordination, dyspraxia may be indicated and an assessment considered
  • Individuals with ASD may appear to be able to organise some aspects of their lives, whilst incapable of organising others (collections are organised whilst personal hygiene is neglected)
  • Consider expectations – a person with ASD may find it hard to manage tasks independently despite good verbal skills.  Variation in the individual’s cognitive profile might lead to parents/carers having expectations that the individual will not currently be able to meet without support

Independence

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.

  • Practitioners need to help parents/carers strike a balance between engineering situations where the child needs to communicate and allowing the child to complete tasks independently without ‘nagging’ (verbal or physical prompts)
  • Parents/carers need to create situations where the child has to communicate to get something that is needed – providing they ensure the child is able to use a system of communication (e.g. Picture Exchange Communication System (PECS)
  • Children with ASD can be helped to develop greater independence and less prompt dependence through programmes such as TEACCH (external site) where there is specific training for independent functioning; the secret is to have clearly defined and structured tasks followed (and marked on a schedule) by the child’s chosen activity. This can be used to train table manners, domestic tasks, washing, teeth cleaning as well as many academic tasks (Peeters, 1997)
  • Fundamentally, practitioners need to be aware of any underlying difficulties that may be contributing to the independence delays, e.g. motor difficulties or dyspraxia

Toileting

Individuals with ASD may develop problems such as constipation because:

  • There may be problems with the digestive system, including the effects of stress
  • The diet may lack appropriate fibre and nutritional balance.
  • There may be sensory issues that interfere with the willingness to defecate
  • Bullying may take place in toilet areas at school when female support staff are not present
  • Existing constipation may mean that defecating is painful
  • Secondary behavioural problems may arise from any of the above
  • Smearing and eating of faeces needs to be tackled by preventing access (supervision on the toilet and the use of a ‘cat-suit’ worn back to front) and giving the individual alternative competing activities (e.g. having an interesting toy to hold and twiddle when on the toilet)
  • Diet needs to be addressed (see below) to keep faeces soft and help maintain regularity. Chronic constipation may need treatment with appropriate laxatives if diet cannot be adjusted
  • Many individuals suffer from chronic and severe constipation or alternatively diarrhoea, due to a poor diet, or possible problems with their digestive systems. Sometimes ‘leakage’ past severe constipation is treated as diarrhoea and the situation exacerbated

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).

Sleep

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.

  • There are general guides that can help with establishing good bedtime routines (see Cerebra for videos and advice or Durand, 1998). Since it is often very difficult to alter the amount of sleep the child with ASD has, it may help the family to re-define the problem as not ‘How can we get Johnny to sleep longer?’,  but as ‘How can we get Johnny to be safe and quiet so the rest of the family can sleep?’ The problem then becomes solvable by training Johnny to stay quietly in his room (even in his bed) and listen to music through earphones
  • Some adults and children with ASD are using melatonin to change sleep patterns. There has been little systematic research (Hayashi, 2000) but reports suggest that it can be helpful in getting the individual to sleep, but that it does not increase the total amount of time spent sleeping (Dodge & Wilson, 2001). Parents generally report paradoxical reactions to more traditional sleeping medication (hypnotics), which sometimes cause increased hyperactivity
  • In some instances respite may need to be considered for the family

Bedtime Routines

Often the problem for children with ASD is one of staying in their own bed, rather than with sleep itself.

  • Parents/carers need help in establishing bedtime routines that assist the individual in getting to sleep. This is likely to include a period of active exercise followed by a routine of bath, bed and a bedtime story and then bed in a room with little alternative stimulation
  • Aromatherapy or yoga techniques can be used to assist relaxation. Relaxing oils such as lavender can be used to assist, although there is no evidence of effectiveness

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).

Diet and Nutrition

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.

  • Even though the restricted diets of children (and some adults) with ASD may not be a health hazard, it adds to the stress of families, and food intake can become more restrictive over time
  • At puberty there is an increased risk of anorexia nervosa in those with AS or HFA. It is thought that the need to be in control leads to these dietary problems. Therefore, approaches to build self-esteem and give opportunities for control in other areas of their lives may help. For young children and those with additional learning disabilities, techniques based on TEACCH structures may be the most promising (see Jordan, 2001)
  • Probiotic foods (e.g. live yoghurts) may help improve gut function by altering the balance of bacteria in the gut of individuals with limited diets. (Critchfied et al 2011)

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).

  • When trying to determine the reasons for food fads it is worth considering whether it is the combination of different textures that is the problem (e.g. having to accommodate to a strawberry in the middle of a yoghurt) and the individual may be prepared to eat the constituents, if these are presented separately (e.g. strawberries and smooth yoghurt)

http://www.scottishautism.org/family-and-professional-support/information-resources/eating/

The Senses

Vision

Vision can be very acute. This can include sensitivity to particular kinds of illumination and colours. 

This can include

  • Noticing the tiniest pieces of fluff on the carpet
  • Avoiding bright lights and sunlight
  • Looking down most of the time
  • Being frightened by sharp flashes of light
  • Visual distortion
  • Attraction to lights
  • Fascination with reflections and bright coloured objects

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:

  • Walking round object running hands around the edges in order to recognise what it is
  • The person who enters an unfamiliar room may have to walk around it touching everything before settling down
  • The person might sit for hours moving fingers or objects in front of the eyes.

The person might sit for hours moving fingers or objects in front of the eyes.

Hearing

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.

  • Individuals may describe their hearing as akin to having a sound amplifier on maximum loudness
  • The person may be a very light sleeper
  • Unpredictable sounds can be frightening (e.g. telephone ringing, baby crying, people coughing)
  • The person seems unable to moderate incoming auditory stimulation
  • The person seems unable to screen out sounds (e.g. speaking on the phone at a noisy airport)
  • The person finds high pitched continuous noise annoying
  • Sometimes hyper auditory people (as well as those with hypo accusis) make repetitive noises to block out disturbing sounds

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:

  • Leaning their ear against electric equipment
  • Enjoying crowds
  • Enjoying loud sounds such as sirens

Tactile

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:

  • Touch used in social gatherings (e.g. handshakes) or even having to sit too close to others in the waiting room
  • Dislike of the sensations of particular types of clothing (or aspects of clothing such as zips) on the body
  • Strong interests in particular textures
  • A need for ‘deep’ touch and seeking experiences to achieve this

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

See Case Study: Adult - David

Vestibular System

People with vestibular hypersensitivity or hyposensitivity often experience extreme differences in their reaction to their environment.

Vestibular hyposensitivity, can lead to:

  • Seeking and enjoying all sorts of movement
  • Being able to spin or swing for a long time without being dizzy or nauseated
  • Enjoyment in rocking back and forth or move in circles while rocking their body
  • Lying on ledges or across climbing frames

Vestibular hypersensitivity can lead to:

  • Difficulty in changing directions and walking or crawling on uneven or unstable surfaces
  • Being poor at sports
  • Feeling over-disoriented after spinning, jumping or running
  • Expressing fear and anxiety of having their feet leave the ground

Taste

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

Smell

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:

  • Perfumes
  • Cleaning liquids
  • Paint
  • Food, especially mixed food

People with ASD using smell as a main information channel may:

  • Smell hands proffered in greeting
  • Smell items (including food) offered to them
  • Smell hair (even of strangers) for identification or just for stimulation

Pain

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

The Senses

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:

  • May have learnt to conceal their difficulties, so practitioners should be sensitive to the possibility, even if they have not stated that there is a sensory difficulty
  • May need practitioners or carers to minimise the physical and auditory distractions during the appointment
  • Practitioners need to ensure the patient is prepared for any physical contact
  • A home visit may be necessary

Consequences for Behaviour

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 person may become obsessed with gaining access to the sensation
  • The person may find it difficult to attend to or focus on other things
  • There can be an intense fear or dislike of a particular sensation
  • The person can respond badly to crowded waiting rooms
  • Fear of noise can result in behaviour that challenges (e.g. breaking the telephone because they think it will ring, making a baby cry and thus being able to predict and manage the noise that will ensue).

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’:

  • Tapping fingers
  • Watching things spin
  • Rocking
  • Spinning
  • Flapping hands

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.

Sensory Issues

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”

Sensory Processing

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.

  • Sensory difficulties are often ‘invisible’ or undetected in individuals with ASD.
  • People with ASD are very different in their sensory profile.
  • Treatment interventions that are appropriate for one person can be harmful to another.

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.

  • A person who appears to be hard of hearing on one occasion may react to an everyday sound on another occasion as if it is causing acute pain.
  • Visual stimuli that may appear painfully bright on one occasion will on another occasion appear very dim.

Reaction to pain may vary from almost complete insensitivity to apparent “over-reaction” to the slightest knock (Jordan & Powell, 1995)

Hyper-sensitivities

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:

  • Sensitivity to bright light or the  flicker of fluorescent lights
  • Being fascinated with light and reflection
  • Intense perception of colours    
  • The smell or taste of any food is too strong
  • Intolerance of the texture of certain foods
  • Painful reaction to loud and/or high noises
  • Overreaction to hot/cold
  • Intolerance of the feel of clothes or shoes
  • Extreme touch sensitivity

Hypo-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:

  • Seems not to feel pain or temperature.
  • Prone to inadvertent self-injury
  • Seeks deep pressure (e.g. crawls under heavy carpets and prefers ‘bear hugs’) and tight clothes
  • Appears not to hear certain sounds
  • The person might wave hands around or rock back and forth or make strange noises in order to stimulate the senses

These sensory differences have led to many children and adults with ASD having been misdiagnosed as having visual and/or auditory impairments.

  • Many children with ASD are suspected of being deaf, as they sometimes do not react appropriately to sounds or words.
  • Despite this, hearing can be more acute than average, but the person might have learnt to ‘switch off’ when experiencing sensory overload.
  • When total sensory input becomes too intense and often painful individuals with ASD learn to shut off sensory channels and can withdraw into their own world.

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:

  • The fear of noise may lead to a person becoming restricted in staying their own home rather than going out.
  • Sounds or visual stimuli can cause pain, confusion and fear, leading to the person being unable to cope in many situations, such as the classroom, visits to the supermarket or visits to the clinic.
  • Difficulty in ‘backgrounding’ and ‘foregrounding’ stimulation may mean that the person is distracted by ‘irrelevant’ noises/and visual details.
  • Many people with ASD are scared of the public address system, such as  bells, fire alarms, or their name being called at the clinic, because the sound causes discomfort or pain.
  • Screeching electronic feedback from public address systems or the sound of fire alarms are particularly bad because they cannot be predicted and have  a penetrating quality.

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.

Signs of sensory differences

The individual:

  • Puts their hands over their ears (sensitivity to noise)
  • Flicks their fingers in front of their eyes (visual sensitivity)
  • Has tantrums at the supermarket (sensory overload)
  • Does not appear to hear certain sounds or show panic reactions to certain unexpected sounds (noise)

Dealing With Change

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:

  • Intrapersonal – physical changes with age.
  • Interpersonal – changes in relationships over time.
  • Organisational & systemic changes – school/college/job/services/benefits.
  • Consider responses to bodily changes such as puberty; girl struggling to adapt to changing body shape may present to eating disorders service.
  • Consider that the trigger for a referral to a service may be change or transition – starting school, changing jobs or getting married.

Transitions may be:

  • Expected
  • Unexpected
  • Traumatic/crisis
  • Planned
  • Unplanned
  • Under the control of others
  • Permanent/temporary change
  • Expected to be positive
  • Expected to be negative

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:

  • Challenge common stereotypes, e.g. an individual who travels abroad for work or works as a teacher, cannot have autism.
  • Think about how natural and unexpected/unwanted changes may affect someone with autism:
    • The impact of biological and physical changes
    • The impact of changes in the individual’s relationships over time
    • The impact of changes in organisations or systems which are important for the individual
  • Think about the nature of possible changes or transitions in people’s lives and their likely impact.
  • Anticipate the impact on service planning and delivery.
  • Consider how the delivery of the current service may contribute to difficulties with change or transition and how the service may need to adapt its practice.
  • Develop local protocols regarding transitions, including collaboration with outside agencies.
  • Anticipate, identify and respond to individuals’ coping with change and transition while they are accessing the service.
  • Work with individuals in preparation of planned/expected transitions or changes.
  • guide and support staff within the service and other agencies in identifying strategies for planned/expected transitions.
  • Work out with the individual and/or relatives and carers, the typical difficulties with change, strategies adopted and sources of support in managing periods of transition.
  • Identify realistic ways to support the individual and the family/carers, including support from other agencies.
  • Manage the different expectations of individuals and their carer/relatives.
  • Identify barriers to successful transition even when there appears to be support available.
  • Identify particular patterns of relative strengths and areas of weakness for the individual which contribute to specifiC challenge of current transition or may assist in the transition.
  • Consider protocols for dealing with communication regarding changes in staff, e.g., regular rotation of clinical staff may cause disruption to treatment.

Relationships

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.

  • Young children with ASD usually find it easier to relate to adults than to others their own age
  • Some problems with groups appear to stem from a difficulty in switching and sharing attention. It is often better to discuss health matters separately with the individuals with ASD and their carers than trying to have a three-way conversation
  • Friendships are best developed around activities where there is a mutual interest and with one other person (although different ‘friends’ may be involved with different activities). Giving children with ASD positive experiences with others increases their motivation for developing friends and their skill in handling the relationship

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.

  • There are special programmes for encouraging positive peer interactions now, which may be available from school or voluntary groups
  • A child with ASD may mistake teasing for bullying and they may need reassurance (and sometimes training in telling the difference) and a way of joining in with others
  • If a young person seeks help to obtain a friend, it is first necessary to try to establish perceptions of what a ‘friend’ is. Young children with ASD may invite ‘friends’ to tea but then leave them for their mother to entertain while they play on their computer alone. Referral to any local playgroups or creating a ‘circle of friends’ (Bozic et al., 2002), where there is adult guidance, may help to develop social understanding

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.

  • Parents need the opportunity to discuss genetic issues because they need to understand the risks and issues for their own family
  • While the actual genes involved remain uncertain, genetic counselling is based on twin study estimates. The existence of one child with ASD within the family increases the risk of having another and there is an even greater risk that other family members will share the ‘broader autism phenotype’. (milder variants that are akin to autism but not sufficiently alike to meet the ASD criteria)

Sexual Relationships

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

Long-lasting Relationships

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.

  • Autobiographical (e.g. Lawson, 2005; Slater-Walker & Slater-Walker, 2003) and research-based professional (e.g. Aston, 2003) accounts of marriage and same-sex relationships in people with ASD show that such partnerships may be mutually sustaining, but may be problematic (not dissimilar to the general population)
  • Many problems arise from naiveté and so better education should help. Partnership counselling is beginning to be available for people with ASD
  • There are no research studies on the children from these relationships, but there appears to be a high proportion with ASD, especially where both parents have ASD
  • Practitioners and parents should be aware of the possibility of confusion regarding gender identity and in women the likelihood of gender dysphoria

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.

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