This section will cover Physical Health issues associated with ASD and idiosyncratic response to illness.
Although the majority of individuals with ASD do not have epilepsy, around 30% do, and a person with ASD is at greater risk of epilepsy if they also have some neurological conditions such as tuberous sclerosis or neurofibromatosis.
There are two peaks for the onset of seizures: infantile spasms (often associated with learning disabilities) and in adolescence.
Epileptic seizures are usually well-controlled in ASD with anticonvulsant medication although this is truer of adolescent onset than infant seizures.
Landau-Kleffner syndrome may be confused with regressive forms of autism because seizures appear (between ages three and seven) in, until then, typically developing children, and these are associated with considerable loss of language. Where there is any doubt a sleep EEG should ensure a differential diagnosis.
Managing epilepsy and the social and practical consequences may be problematic in ASD.
- The person with ASD may not be able to communicate their problems. Parents/carers need support and advice in managing risks and medication, as will the more able adult living independently. Those living independently will need more explicit, visual advice than other patients
- Safety rules (e.g. letting parent/carers know you are taking a bath), aimed at preventing tragic consequences of a major seizure, may be forgotten or deliberately avoided because they interfere with other activities (e.g. the person is having a bath at a time that is not agreed, or the person likes to have all doors closed and to lock them against intrusion)
- Diet and sleeping routines, designed to minimise seizures (and work with the medication) may be ignored or forgotten
Gastrointestinal and Nutritional Problems
Research has shown that there is a higher incidence of gastrointestinal (GI) symptoms in individuals with ASD than in the typical population (Galli-Carminati et al., 2006), occurring in as many as 46% of those with ASD compared to 10% in the typical population. The presence of untreated GI, especially gastro-oesophageal reflux, is often linked to behaviour difficulties and to dental problems.
Problems in ASD include:
- A failure to notice hunger or thirst
- Irregular eating and drinking routines
- Very limited diet in terms of the range of food and/or drink consumed
- Certain food and drink may lead to health or behavioural problems (e.g. gluten and casein)
- Chronic constipation
- Frequent vomiting
- Unwillingness to use toilets outside the home
- Anorexia (it is estimated that about a fifth of girls with anorexia may be on the autism spectrum)
- Seek advice from a dietician for children with very limited diets or food and drink intake
- GI conditions should be managed in the same way as for other individuals (SIGN, 2007)
- As yet, there is no evidence base for or against a gluten or casein free diet (Marí-Bauset et al, 2014)
Idiosyncratic Reactions to Illness
This section will show how individuals with ASD may react to illness. See Adjustments to Practice for further advice.
Individuals with ASD may have difficulty becoming conscious of and reporting their own symptoms.
Many individuals with ASD who are living ‘independently’ may be at risk of failing to report significant symptoms of illness or injury.
- Medical causes (e.g. earache, toothache, bowel pain) for challenging behaviour should be checked.
- Patients with ASD (even when they have speech) cannot be relied on to report symptoms, or the effects of treatment, especially when attention is elsewhere (e.g. they are engaging in an obsessional activity or they are anxiously scanning a new environment).
- There might be unusual and delayed responses to pain or injury and an inability to locate pain on their body.
Adults with ASD need to be educated:
- To discriminate symptoms that do or do not require treatment
- About which symptoms can safely be ignored.
- About which can be dealt with simply through home medication (e.g. ibuprofen for a headache, or washing and a plaster for a graze).
See Case Study: Adult - Peter and Case Study: Adult - George.
Individuals with ASD may react very badly to procedures for which they are not prepared, especially if this involves any physical contact.
- Patients with ASD may need to be educated to use a visual rating scale illustrating the severity of the pain they are experiencing.
- Unless they have had specific training, they may fail to report significant incidents of bleeding and/or may over-react to benign conditions (e.g. menstruation, slight bleeding after a superficial graze) and seek medical treatment inappropriately.
- When needing injections, they need to be warned of what is to happen (it will be far more distressing for them to be handled unexpectedly than to be given an injection for which they have been prepared). The cleaning of the area that precedes injection may be far more disturbing to a touch-sensitive patient with ASD, than the injection itself.
Biochemistry and Medication
Biochemistry and medication
Individuals with ASD have unusual and even paradoxical reactions to medication (Gringras, 2000 and Gringras et al, 2012).
- There may be idiosyncratic reactions to medications (as with others) whereby increased doses have a reverse or negative effect. A cautious and watchful approach will be needed.
- As with the general population analgesics such as Paracetamol may be ineffective in some cases (Alberti et al. 1999), and physicians need to be alert to this possibility, especially where there are problems in reporting reactions to pain.
- Idiosyncratic reactions are to be expected. For example, medication for sleep or to tranquilise may instead lead to hyperactivity and some anaesthetics may be ineffective. More information can be found here.
Stress & Anxiety
Stress and anxiety are common, if not universal, features of ASD and both lead to, and react with, illness in ASD.
- The chronic stress associated with ASD leads to stress-related disorders and the individual with ASD will benefit from preventative treatments aimed at stress reduction.
- These may be discussed with parents/carers.
- The symptoms of any acute illness may lead to additional anxiety and stress because the individual does not understand what is happening and because the symptoms cause changes in appearance and sensation (e.g. rashes, sore throat).
- Clear explanations of the symptoms and their temporary nature will alleviate some anxiety.
Effects of stress and anxiety may interfere with the way the consultation is received and understood.
- Visits to a surgery or clinic will cause stress, which can make it harder for the person to take in what is said and may lead to new, or exacerbation of old, symptoms and signs (e.g. further raising blood pressure, dilating pupils and causing sweating)
- Patients with ASD will require even more time than usual (and much more time than others) to make sense of what they are told by practitioners in conditions of stress
- Giving written information to the patient and/or parent/carer will help
See Case Study: Adult - Susan.
Stress and anxiety may make it even more likely that the individual with an ASD may not grasp, or may misunderstand, information and advice given in consultations. The Adults with Incapacity Act (Scotland) (2004) makes it difficult to involve others in consultations with adults, unless the person has a severe learning disability. Where this is not formally the case, it may nevertheless be wise to ask the adult with an ASD if they would like to bring a trusted advocate with them to a consultation, especially where important information is to be given.
- A positive response to a question about their understanding may not mean that that is really so, especially under stress, and all verbal information should be backed up by clear unambiguous written (or pictorial, if necessary) information (e.g. about when and under what conditions to take medication).
- It may be wise to book follow-up consultations to check that medication is being taken appropriately and there are no additional problems.
- Where possible, parents/carers or agreed advocates, should also be given the relevant information, even when the patient is an adult.
Techniques for cueing patients to take the correct dosage regularly (e.g. pills packaged by day and time dosage) are needed, even for the most able. Where possible, practitioners should consider ‘once daily’ dosing.
Social signals of all kinds are not salient for most individuals with ASD and the social context is a source of additional stress rather than comfort.
Attention needs to be caught, rather than assumed, and all instructions need to be unambiguous and explicit.
- Where possible, check with parents/carers about the term to be used to gain attention. A person with ASD and additional learning disability, for example, may be used to being addressed by first name only and may not respond when practitioners use more formal or polite modes of address (e.g. ‘Mr. Smith’, ‘sir’).
- Do not start talking to the patient (especially if his/her attention is vital) without first using a known signal to gain attention, and giving him/her time to respond.
- Do not begin procedures (e.g. take hold of a wrist to test a pulse) without giving a clear warning and time for preparation.
- Wherever possible give parents/carers warning of the kinds of procedures and tests to be used so they can help prepare the person (child or adult) for the experience.
- Do not assume that an instruction such as ‘you can get changed now’ will be interpreted as an instruction to take off some clothes (or one’s own clothes); the instruction needs to be precise and specific.
- Instructions to ‘give me your arm’ in the context of a clinic or surgery, where the person may believe amputations are possible, may lead to a panic reaction; re-phrase as ‘let me hold your arm to take your blood pressure’ or whatever is appropriate.
It is important to try to reduce the stress of individuals with ASD arriving for appointments by making the setting as ‘autism friendly’ as possible
- Give an appointment time outside normal surgeries so patient can be seen without waiting.
- Waiting for treatment in a crowded waiting room may lead to intolerable stress and consequent reactive behaviour.
- Make a seat available that is in a comfortable position for the patient (e.g. at a distance from others and positioned so that others cannot approach from behind) or give a clearly demarcated area in which the person can pace.
- Distraction with something to hold and manipulate can significantly reduce additional stress.
- Do not engage in ‘social chit-chat’ in an attempt to put the patient at ease. This is likely to have the reverse effect and will confuse and disturb the person with ASD.
Although it is not a diagnostic feature of ASD, children and adults with ASD all experience much higher levels of anxiety than the typical population. The effect of anxiety in association with ASD is to make problems worse and to turn what might be a difference into a disabling disorder. Anxiety may lead to an even narrower focus of attention and limit learning opportunities.
Many anxious children with ASD may be ‘over-attached’ in the sense of being fearful about leaving familiar and trusted adults, especially their mother. This can lead to ‘clinginess’ and a greater reluctance to go to school or go to play with other children.
Anxiety deepens the fear of others and makes it harder for people with ASD to mix with others and learn from and with them. It can lead to painful shyness and excessive fear of embarrassment. People with ASD already find it difficult to make friends and join in with others because they lack the understanding and skills to do so, even when they have the motivation. Anxiety exacerbates this and leads to even greater social isolation and fewer peer friendships.
Generalized anxiety is perhaps the most debilitating of all. There is often excessive worry about daily events, past and present (e.g. homework, tests, popularity, health) leading to tension, irritability, aches/pains, or further difficulty sleeping. Anxiety disorders can cause high levels of arousal and increase the likelihood of sensory overload. They can make it harder to seek or enjoy new experiences and increase the likelihood of phobic reactions.
Types of Anxiety that are particularly associated with ASD are:
- Separation anxiety
- Social fear or Social Anxiety Disorder
- Social reticence
- Generalized anxiety
See Case Study: Adult - Samad
In some cases, the person may develop an anxiety-related disorder. Anxiety Disorders include:
- Phobias. These are already prevalent in ASD, being irrational fears brought on by anxiety. Reducing the anxiety through cognitive behaviour therapy (CBT), where possible, may help the person risk exposure to phobic stimuli and thus gain some control and desensitisation
- Panic- attacks. These arise in ASD when there is anxiety and the person is suddenly exposed to a situation for which they were not forewarned and unprepared. They are often wrongly attributed to ‘aggression’
- OCD. It can be hard to distinguish the obsessions and rituals of ASD with the compulsions of Obsessive Compulsive Disorder (OCD). A rough guide to discriminating the two is whether the person is increasing (as in OCD) or decreasing (as in ASD) their anxiety as they perform the obsession or compulsion. See Matson et al (2007) for their indicators to identify OCD in ASD
It is often counter-productive to try to eliminate obsessions. The individual can be supported to manage obsessions in the following way:
- Limiting the obsessions (if necessary), and using them as a reward after undertaking less favoured activities
- Teaching or introducing new activities
- Using forms of cognitive therapy
- Helping individuals to overcome an obsessive checking and straightening of objects by teaching them to take a digital photo of the straightened object (e.g. the picture of the doormat) and look at that to resist the temptation to go back and check
- Having a ritual phrase to self-control impulses by saying it aloud
- Having a set number of checks or times that something can be done and sticking to this rigidly
Obsessions may have significant ramifications for other areas of functioning
- An obsession with not wasting food may result in the person eating out of date and hazardous food, as well as over-eating
- An obsession with dieting can lead to anorexia nervosa
- An obsession with engaging in a forbidden activity (even one that is just forbidden temporarily) may lead to ignoring other safety rules in the effort to fulfil the activity (e.g. wanting to observe gables at close quarters may lead to roof climbing)
Depression & Bipolar Disorder
There is an established link between ASD and affective disorders such as depression and bipolar disorder (DeLong & Nohria, 1994). There is probably a genetic link in that families of people with ASD have a higher incidence of these affective disorders than families of those with other kinds of disorder.
There are two sources for depression in ASD:
- Endogenous depression: This arises from an independent source from the ASD. There may be a genetic root to this kind of depression in ASD. It could be linked to neurochemicals, such as serotonin, which is known to be affected in depression and ASD, and which provides a basis for some treatments
- Exogenous depression: In addition to the biological risks of depression, people with ASD may become depressed through a realistic appraisal of the nature of their difficulties and the curtailment of opportunities that frequently results from ASD. This source of depression appears more common in the more able (or at least is more easily recognised in them) perhaps because they have greater ambitions or are more aware of missed opportunities
Minimising potential environmental causes can help with endogenous depression:
- Identify SAD (seasonal affective disorder) and ensure adequate exposure to sun light (or to a lamp with the properties of sunlight)
- Reduce stress in the environment by increasing its structure and predictability
- Teach coping skills to reduce a sense of impotency
- Medication may be necessary, but it should complemented by educational and occupational programmes
- ‘Keeping busy’ in enjoyable activity is a common antidote to depression for all (including those with ASD) but with the added difficulty in ASD in providing the relevant opportunities
- Exercise is helpful in reducing levels of both stress and depression
Low self-esteem and constant rumination over past failures may lead to more depression.
- Try to regularise sleep so there are not the chronic effects of sleep deprivation
- Increase structured and enjoyable activities
- Produce short term plans (and make these explicit and accessible) with regular ‘rewards’ in the form of enjoyable activities
- Make programmes (for the child at school or the adult in a work or care placement) that are built on the person’s interests and strengths rather than on continual addressing of ‘deficits’
Where there is sufficient cognitive and linguistic ability, referral for cognitive behavioural therapy (or its equivalent) can help the person put the past in perspective and move on more positively.
There is an increased risk of bipolar disorder in ASD. The symptoms of bipolar disorder are easily confused with the ASD symptomatology.
- The onset, as among the typically developing, is most common in the teen years
- With hyperactivity and depression both being common in ASD, bipolar may be missed. Practitioners need to be alert to the possibility so they can refer for diagnosis
- The symptoms associated with ASD are milder and more amenable to change than those associated with bipolar disorder
- Bipolar manic periods may start at the point that the hyperactivity associated with early childhood in ASD, has diminished
- The depressive episodes in bipolar disorder appear more severe (perhaps in contrast to the manic periods that precede them)
Managing Bipolar Disorder
Medication will usually be required, but it should be given alongside education and behavioural approaches.
Developing specific and explicit visual aids may help individuals with the bipolar disorder understand what is happening to them and (even more importantly) understand the cyclical nature of the disorder and that each phase will pass.
Self-harm, Suicide Risk & Violence
There is a significant risk of self-injurious behaviour (SIB) in children with ASD, 33% in ASD as compared to 12% in the population of people with learning disabilities. Two early predictors are SLD and children with repetitive motor movements. There is often an increase in SIB between the ages of 10 and 20 years. Pain and discomfort is thought to be the biggest cause of SIB, but then SIB might be maintained by other factors (e.g. endorphin release; adult response to the behaviour). Children with ASD are also more likely to have gastro-intestinal (GI) problems and reflux problems which give a burning sensation and produce acid which can rot their teeth, thus leading to discomfort and an increased risk of SIB (Oliver, Davies and Richards (2013); Walsh, Morrison & McGuire (2011) – adults).
Self-injury may be a reaction to:
- Physical pain and discomfort (e.g. toothache, earache, headache)
- Anxiety – ‘general non-specific anxiety is hard to bear and self harm may enable people with ASD to focus on this definite sensation instead
- An unpredictable or overwhelming situation
- A way of triggering endorphin relief (a biological reaction to the injury) and mitigating the effects of the anxiety
- Controlling themselves and the reactions of those around them
Self Injurious Behaviour (SIB) is viewed separately from self-harm. SIB is often understood as a form of “challenging behaviour”. This is different to self harm that may be used as a coping mechanism or expression of overwhelming distress.
In individuals with ASD and additional severe learning disabilities, self-harm is likely to arise as a reaction to frustration or panic.
Self-harm may be triggered when:
- Something unexpected happens and leads to panic
- The adult or child with ASD is confronted (someone invades their space) or their path is blocked
- A well-practised routine is interrupted or blocked
- Individuals are unable to have what they want and there is no clear pathway forward
- Something they expected fails to happen
- Something familiar is changed without warning
- Previous patterns of response to self-injury have been re-inforcing (e.g. the individual is removed from a situation they find aversive)
Suicide may be viewed as an extreme form of self-harm but self-harm may also lead to death. Thus, it is triggered by the same kinds of stimuli as self-harm. In more able children and adults with ASD (as in the general population), suicide may be a reaction to depression (see above). It may also reflect the value placed on the self and may be a ‘cry for help’. There is some new evidence on suicide risk in ASD. Cassidy et al (2014) found that adults with Asperger’s syndrome were at a significantly greater risk of lifetime history of suicide ideation, plans or attempts than the general population.
Practitioners should be alert to factors that would predispose to suicide, with a view to seeking support to prevent the suicide.
Suicide may follow when:
- Self harm gets out of control (e.g. the teenager who cuts herself when depressed and inadvertently cuts too deeply)
- The person is depressed with low self esteem, and cannot see any way ahead
- The person views his future without hope or expectation of something better (e.g. the young man who reported that ’he could not bear the fact that each day was as hard as the last’)
Violence can be seen as the obverse of self harm and will be triggered by many of the same events or situations.
Violence in ASD is often misinterpreted as ‘aggression’. This is unlikely where the individual seldom has the understanding of others necessary to show aggression (i.e. they target behaviours not individuals) It is more likely to be a reaction to panic or frustration. Calling it ‘aggression’ suggests the cause is known whereas describing it as ‘violence’ makes it easier to see the actual causes and devise more appropriate treatment.
Violence may arise when:
- The person is overwhelmed by sensory information
- Routines are interrupted
- Goals are blocked
- The individual has no other form of communication or way to get needs met
- Others crowd their space, especially unexpectedly
- The reactions of others to their violent outbursts are predictable and salient
Difficulty in becoming aware of their own emotions makes it hard to control their own reactions.
- Emotions need to be taught specifically from awareness (through visible external reactions such as increased heart rate, flushing, sweating) of their own emotional reactions to situations
- Once self emotions have been identified they can be taught to recognise the same reactions (and thus emotions) in others
- Identification of their own emotions at an early stage, before it has led to a violent outburst, can help them learn and apply alternative reactions to obtain the same goal
Identification of their own emotions at an early stage, before it has led to a violent outburst, can help them learn and apply alternative reactions to obtain the same goal.
Medication to control mood disorders may be warranted as part of a programme that also involves behavioural and educational aspects; it should be a short-term measure to help initiate change, although there are individuals with ASD who claim continuing benefit from regular anxiety-reducing medication.
Individuals will vary, so the use of medication should be guided by individual responsiveness – getting feedback from individuals themselves, from parents/carers and from school or day care sources.
- Medication can be used in the early stages of a programme to help the person establish some control of their emotional reactions and gain confidence
- Long term medication for emotional reactions should be carefully monitored for effectiveness and side-effects
- Medication when effective alleviates symptoms and treats the underlying condition. It should be backed up with education to help the person understand the condition and develop new coping skills
Practitioners need to avoid reactions to violence or self harm that may exacerbate the situation. When faced with an episode of violent or self-harming behaviour that is apparently ‘out of control’, the practitioner should:
- Work with parents/carers to isolate the person, as far as is practical, in a safe secure environment
- Offer the person a low chair or clear space on the floor on which to sit. This is a position that will lessen the type and speed of damage and will ‘buy’ thinking time
- Where the individual is not used to sitting to calm down, try to find a clear (protected from intrusion) space in which they can pace
- Do not analyse or discuss the reaction or the presumed trigger, until the person has calmed down
- Keep at a distance, while observing carefully, to look for opportunities to intervene and possibly distract (e.g. sit in view holding out a favoured item, but not looking at the individual)
- Clear others out of the situation and, if identified, try to eliminate the trigger
- Aim to minimise any potentially harmful effects of these actions
After an incident of violence or self harm, there needs to be a period of reflection and an educational plan (for adults as well as children) to try to avoid similar occurrences in the future.
Practitioners need to reflect on the incident and plan their responsiveness to such situations. They also need to consider ways responding to the individual with ASD and responding to the family/carer needs for training and support.
Following a violent or self-harming incident:
- Staff and parents/carers need to reflect to identify possible triggers and/or setting conditions that may have led to the problem reaction
- Risk assessment should be undertaken to help with the planning of future appointments
- Staff, parent/carers and the individual, where possible, need to develop an educational plan for alternative responses to serve the same functions
- Train and rehearse a drill (e.g. sitting on command) that the individual can perform (in response to a definite signal) when s/he is in a panic and not able to think through a problem or put in place a learned strategy
Forensic associations with ASD
Social naiveté may lead the person with ASD to indulge in activities that are dangerous, socially undesirable or even illegal in pursuit of goals or because they are vulnerable to exploitation by others.
It is not that these offences are more likely in ASD than in the rest of the population, but that the person with ASD may commit them in innocence and would benefit from education in the social rules.
- Desire for a sexual relationship (or even a friend) may lead to following of anyone who displays any sign of friendliness
- Desire to belong to a group (or to avoid bullying) may lead individuals with an ASD to allow themselves to be set up to engage in dangerous, socially inappropriate and/or illegal activities
- There may be little sense of, or respect for, personal possessions
- They may not understand sexual prohibitions and indulge in sexual activities with inappropriate ‘partners’ (e.g. children/animals) or at inappropriate times and in inappropriate (often public) places
- The young person with an ASD may not be able to judge adequately the real age of a girl who says that she is 16
- Lack of understanding of the complex communication in social media may lead to serious problems
Any violent incident can escalate so that there could be forensic consequences. Violence may escalate to dangerous levels because:
- The individual with ASD may have no awareness of the consequences of behaviour on other people
- The individual with ASD may have no self awareness of particular actions and thus is not able to control them without external support
- The individual with ASD may have little capacity to reflect on and monitor (and thus control) own actions
People with ASD may get into trouble because they do not understand the social rules. They are also more likely to get ‘caught’ or to admit to a ‘crime’ because they do not understand these same rules (i.e. they do not know they have done anything wrong) or because they do not generally find it easy to lie. They may learn to tell very ‘childish’ lies to avoid trouble, but most individuals with ASD find it very upsetting to say something that is not real or correct.
Their memory of events is also likely to be very accurate (i.e. it is not distorted by their other views or wishes), although they have difficulty extracting what is relevant from the whole.
Their difficulties need to be taken into account when they appear as victims of crime, but their ‘evidence’ should not be discounted.
- There may be a failure to generalise social rules to all appropriate circumstances (e.g. they may understand a rule about not ‘stealing’ from a shop as applying to that shop only)
- When reporting a crime (e.g. when they have apparently been the victims of abuse) the details of what they say can be trusted, but it may need someone who understands ASD to tease out the meaning. They may not understand the intention of others and either miss the abusive nature of the act or interpret necessary care-giving as abusive
Pursuit of particular obsessional interests may become illegal and/or dangerous in their own right or may cause them to ignore (or fail to register) legal barriers to them indulging in their interests.
- The person with an ASD may trespass to get access to some material or to climb
- A love of fires and violent outcomes may lead to arson, with no awareness of consequences, beyond the fire itself
- Consider typical response of avoidance as a way of dealing with difficult issues, e.g. running away from the scene – may get them into trouble or make them look like they are ‘guilty’ in some way
- Taking the law into their own hands – seeing others breaking the law/flouting rules, but not recognising that this is not their role
- Standing up for others who are being bullied/attacked or abused – situation escalates and unable to read social cues and when they should leave the situation or step back
The meaning of behaviour
This Section will cover the range of behaviours that might be presented by a person with an ASD and some signposts to what these behaviours might mean for the individual.
Many adults with ASD have described what it feels like to have an ASD from their perspective. They can provide some valuable insights. Sometimes we may need to try to transport ourselves into that world to understand the behaviours of the person.
Ros Blackburn, who is an adult with autism, says:
“To me, the outside world is a confusing mass of sights and sounds. It is totally baffling and incomprehensible. Try watching a soap opera on television with no volume. The characters' actions immediately become sudden and unpredictable since the meaning behind them is no longer clear."
- Ros Blackburn (2000).
Wenn Lawson is high functioning autistic adult. Wenn describes insights and experiences in his website.
This different experience of the world can lead to the person exhibiting atypical behaviours. Some of these behaviours will be as a direct result of having an ASD. More able individuals may only show such behaviours in stressful situations.
Some behaviours associated with, but not exclusive to ASD:
- Flapping, rocking, skipping
- Lining things up
- Looking at things from a particular angle
- Watching things spin
- Continually acting out scenes from a particular video
- Insisting that a game is always played in a certain way
- Playing very rigidly with toys (e.g. lining up cars, posting into boxes)
- Insisting that stories must always be the same
- Planning and preparing for events to the ‘nth degree’
Rigidity in thinking and behaviour can lead to reliance on routines, rituals and resistance to change. This is also often described as a ‘need for sameness.’
Routines are of course essential for everyone. Most people develop set times and procedures when they wash, dress, go to work and so on. It is when such habits are so fixed that they interfere with functioning that problems occur. If individuals become so reliant on the train leaving at a certain time that they cannot cope if the train is delayed, then this impacts upon day-to-day functioning.
The person might:
- Create rituals and routines for themselves and be very disturbed if these are interrupted
- Insist that things are done in a certain way
- Insist on the same route to the clinic/school/work every time
- Show an unusual resistance to unfamiliar food
- Need to know exactly who will be attending an event and what the precise programme is for that event
See Case Study: Adult - Helen
Rigidity of thinking and behaviour can also be expressed in terms of a lack of spontaneity and initiative. Choice can also be difficult in that it will be hard to hold two alternatives in mind at the same time. The person may appear only to be able to function on one ‘channel’ at a time. They may require much more explicit information about the options than other patients.
- The person may have difficulty choosing activities or engaging outside their own interests
- There may be difficulties in planning activities or switching from one activity to another
- It can be hard for the person to consider alternatives or to make a decision when possibilities are open
- There might be problems in knowing what to do in unstructured situations
- It can be difficult to answer open-ended questions
- The person may be able to learn set routines and even set responses to questions, but s/he may then be unable to modify these and may become upset if asked to do so
Difficulty in understanding how others think and feel will also make it hard to predict other people’s behaviour. This can result in a tendency to seek out the predictable in terms of other people’s behaviours as well as a tendency to seek out what is regular in the asocial world such as bus timetables, air flight numbers and so on.
In the clinic setting, this may lead to the person being:
- Generally anxious
- Scared of the doctor or nurse
- Fearful of possible discomfort or pain
- Scared of intervention or the unknown
It can be hard to switch attention and it may take a long time to do so. This can sometimes lead to the person being perceived as being ‘difficult’, ‘disobedient’ or 'detached'.
When a person displays processing difficulties, the natural instinct may well be to repeat an instruction, often using slightly different wording. However, this can make things harder for the individual with an ASD, given that there is now a different instruction to process and processing may need to start all over again.
Be aware that the person can have difficulties with:
- Following a string of information
- Needing time to process concepts
- Understanding what is required
- Focusing on tasks led by others
- Being motivated to take part
- Attending to more than one thing at a time
The person may have learned set responses to questions, but may then be unable to modify these and may become upset if asked to do so. Try to ask a parent/carer to help answer questions or to interpret the set responses given.
It is also useful to know how the person usually behaves so that you can know whether the behaviour displayed is unusual.
- May well learn in a rote way
- Might stick to learned responses
- Might rely on others to cue their actions and to prompt them
- May not be able to answer questions at all
- May bombard the practitioner with information but be unable to sift out the important or relevant aspects
- May perpetually ask questions
Another important area that might directly impact on the clinic setting is memory. There may be difficulty in retrieving memories and a failure to develop personal event memory. Jordan and Powell (1995) have drawn attention to the fact that individuals may not be able to search their memory for personal events yet have excellent long-term cued recall for facts about themselves, e.g. important dates or information about their special interest. Brezis (2015) and Skirrow, et al (2015) describe these difficulties and possible models to explain them.
This can make it difficult for the person to give a genuine medical history or to tell the practitioner what has happened in the past, except as a rehearsed ‘fact’. A difficulty in recalling the gist of what happened may mean they provide too much detal and are not able to summarise or give key points.
- Memory can be extensive in terms of rote learning but the person may need cues to retrieve personal memories
- The person might not spontaneously remember what happened to them or how they behaved
- The person might find it difficult to give the gist of an event
- The person may be able to give a written account but not a verbal one
Causes of Stress & Anxiety
Many people with ASD experience stress in that they perceive the world in a different way from others and that the world is not suited to people with an ASD.
‘The problems arise not so much from Asperger’s syndrome itself, as from a social world which is not designed for people with Asperger’s syndrome but for people who think and perceive the world in very different ways’.
Understanding and adapting the environment can therefore make a large difference to how well the person functions.
There may be a variety of reasons why an individual displays certain behaviours. The meaning of a particular behaviour lies with the individual and the particular situation the person is in. Stress can intensify rigidity. One of the starting points for reducing rigidity of thinking and behaviour is to identify sources of stress.
Some triggers can be:
- Particular phobias
- Confusion over what to do or what is expected of them
- Uncertainty or not knowing when some event will be over and what will happen next
Sensory overload can also be a reason for anxiety and consequent inappropriate and self-abusive or violent behaviour. Head banging, knuckle nibbling and tantrums are a way of telling others that enough is enough.
Lawson 2001 highlights behaviours that signify overload:
- Pacing up and down
- Covering ears with hands
- Excessive spinning or rocking
- Total withdrawal
- Violence or destructiveness
- Head banging
- Self injury
See Case Study: Older - Child Finn
Several studies have indicated that there is a greater risk and higher incidence of depression or affective disorder in adults with ASDs (Ghazuiddin 2005). This may be the result of a poor quality of life and a low self-esteem or it may be an additional disorder. Co-occurring conditions are common in childhood through to adulthood (Balfe & Tantam, 2010, LoVullo et al., 2009, Simonoff et al., 2013, Lai et al., 2014).
Signs of problems arising as a result of anxiety:
- Withdrawal or inhibition of effort
- School failure
- Job loss
- Irritability and violent outbursts
- Passivity or dependency
- Alcohol misuse (helps to overcome inhibitions but promotes inappropriate behaviour)
There will be particular times in individuals’ lives that may make it more likely that they will display unusual behaviours or increased anxiety, stress and possibly depression. An analysis of a week in the life of a person would help to consider the extent to which lifestyle factors are contributing to anxiety and depression. Anxiety and stress are already high in ASD but are likely to increase at specific times such as:
- Starting school
- Moving to secondary school or into further education
- Beginning, changing or leaving employment
- Teaching or support staff changes
- Death/loss of parent or carer
- Removal or loss of special interest or activity
Causes of Stress and Anxiety - Adults
Adults with Autism Spectrum Disorders
Where patients are adults with an ASD, they might attend appointments unaccompanied. Arranging appointments can be a real difficulty, even for able people with ASD. For example:
“At a recent meeting for people with Asperger syndrome in London…it was suggested that…individuals might make their own arrangements to meet…without the facilitation of staff. The suggestion was greeted with much incredulity. ‘You should know’ said one young man, a University student who had contributed actively to the day, ‘that you might as well ask us to go to the moon.’”
Howlin, (1997) p. 257
Reasons for Behaviour - Adults
The behaviour exhibited by an adult with an ASD in the appointment situation will be affected by a number of factors, both directly and indirectly related to the appointment.
“As people with autism we tend to find our sense of security in our rules, rituals and continuity of roles…Therefore it is very distressing when life does not go according to our expectations…”
Lawson (2001). p. 29
Factors likely to affect behaviour:
- The person’s current state of health
- The disruption that the appointment causes to their routine
- Anxiety caused by the practical aspects of attending an appointment
- Stress at the social demands being placed on them (e.g. sitting in a small consulting room, being looked at and asked questions, tolerating physical contact)
- Whatever problems the person may have encountered en route to the appointment.
- Anxiety caused by not knowing what is expected of them during the appointment (this may include fear of physical examination)
- Difficulties in communicating with the practitioner and responding appropriately to questions ( Likely to be exacerbated if there is more than one practitioner involved)
Behaviours as Coping Strategies - Adults
In some cases, a patient may displace their anxiety by becoming upset with some aspect of their treatment. This can manifest itself as rudeness or even aggression. The social difficulties caused by autism spectrum disorder can make it difficult for individuals to assess how others perceive their behaviour.
Behaviours associated with stress in appointment situation:
- Not wanting to sit or be still
- Evasive tactics (e.g. asking to go to the toilet)
- Seeming unhappiness with an aspect of the appointment (e.g. treatment by the receptionist)
- Repetitive questioning
- Passive attitude
- Forceful, rude or even violent attitude
- Delayed or no response to questions
- Co-operating fully but close questioning reveals a lack of understanding
- Booking in but then leaving before gaining consultation
- Having repeated number of appointments without arriving because could not enter the building for a number of reasons
See Case Study: Adult - William