Adjustments to practice

Preparing To See Someone

This section focuses on practical strategies and is aimed at practitioners who are likely to come across individuals with ASD in their day-to-day practice. Many examples are based on medical consultations, but are relevant and can be adapted for those working in dentistry, optometry or pharmacology, for instance.

Appointments

Any appointment will inevitably involve the disruption of normal routines and this is likely to be a source of anxiety for the patient with ASD.

In addition, even adults with a good level of functioning may well find the practicalities of getting to an appointment on time a considerable challenge.

Practical Strategies

  • Consider if the venue and time of the appointment is likely to be problematic for your patient, and the potential impact of any anxieties related to attending the appointment.
  • Waiting in a busy waiting room can increase anxiety. If possible, offer a quiet space or allow individuals to wait outside until the clinician is ready to see them.
  • Identify what individuals and agencies, if any, are supporting the patient.
  • Offer an appointment time during a quiet part of the day or outside of usual appointment times.
  • The individual with ASD may only be able to endure one such intrusion per day, or even per week. Any regular treatment programme will need to take this into account, or the patient may simply not be able to attend.
  • Check if the patient uses a hospital passport to help communicate their needs.
  • A home visit may be a necessary option for some patients. If so, there are important considerations surrounding the inevitable invasion of personal space.
  • Often, individuals with ASD lead fairly solitary lives and are not used to visitors in their home. Their personal environments need to be treated with respect. They may have collections of everyday items which are untidy or even unhygienic, but which are valued highly.
  • It may be necessary to ignore such unusual aspects of the environment if a successful consultation is to take place.
  • Refer to appropriate support agencies if a home visit reveals health or welfare issues.

Engaging The Family/Carers

Consider how to enlist the help of family or carer in preparing for an appointment:

Before The Visit

  • Conduct an initial assessment over the phone, finding out about strengths, limitations and previous experiences of appointments.
  • Seek guidance on types of communication that will work best for the patient with an ASD.
  • Find out if there are behavioural strategies you should use with the person.
  • Find out about any calming techniques that help the person.

Be Clear

  • Provide information for the family/carers about who will be present and what will happen. They can then prepare the person with an ASD.
  • If it’s not possible to establish prior to the appointment, ask about what works best and what to avoid, and find out about sensory sensitivities. Find out about the person’s level of understanding, how the person prefers to be touched, and whether there are any specific fears and concerns.

See Case Study: Adult - Samad

Putting The Patient At Ease

QuoteAdult patients will have had experience of medical appointments and examinations. However, they may have developed specific fears as a result of previous bad experiences and it is important to be aware of this and sensitive to it.

Where the patient is supported, the parent/carer should be able to offer guidance on the best approach for that individual. However, it is important to direct communication to the individual, rather than to the parent/carer, as much as possible. However articulate patients are, they are likely to be highly anxious and may have difficulty explaining their symptoms, asking appropriate questions and absorbing information. To allow for these difficulties they may require a longer consultation than is usual.

“Warn people about what it is going to happen and ask permission. Be flexible – not ‘my way or the highway’”

Practical Strategies

  • Gain information from the parent/carer (or individuals themselves) in a manner that preserves their dignity.
  • Telephone the parent/carer prior to the appointment to obtain any background information which would facilitate the appointment.
  • Communicate directly with the patient wherever possible.
  • Check the patient’s understanding by asking simple, but not leading, questions and allow time for information to be absorbed.
  • Plan the appointment carefully to ensure the patient is not rushed.

Being Clear About What Will Happen

It is important to make sure that the patient with ASD feels as comfortable as possible before a procedure begins. Spend time reassuring them about what is going to happen, through an intermediary if necessary. A parent/carer who is accompanying the patient is likely to know how to keep the situation as calm as possible.

Practical Strategies

  • Allow the patient time to settle.
  • Talk quietly and slowly.
  • Use simple words.
  • Check that the patient understands - if the patient is too young or does not speak, there may be a symbolic communication that they use.
  • Check on how the patient feels.
  • Explain what you are going to do.
  • Show the patient any equipment you are going to use and allow them to touch the items.
  • Practitioners might do a mock demonstration on themselves or the patient’s parent/carer.
  • Ask if the person is ready.

See Case Study: Young Child - Jake

Calming Techniques

If patients are already physically stressed then it may be necessary to wait until they are calmer in order to gain their confidence sufficiently to go ahead with a physical examination or to gain a true picture of their health.

Use simple de-stressing exercises focussing on breathing and posture to help patients calm down. Ask the parent/carer what helps the patient to stay calm and use that, if appropriate. Only proceed with the intervention once the patient looks or says they feel calmer.

Practical Strategies

  • Have simple ‘de-stress’ toys available – squeeze balls, marble runs, objects to twirl or twiddle.
  • Ask the patient to breathe slowly and deeply and the practitioner then attempts to control the rate by slow counting.
  • Involve a parent/carer, if present, in employing calming techniques.
  • Concentrate on relaxing shoulders and facial muscles by flexing and releasing.
  • Only proceed with the examination or procedure once the patient looks or says they feel calmer.

The Consultation

Developmental Checks

When trying to gain medical information it’s important to word questions so that they will elicit clear and literal answers. Where any kind of instrument, measure or piece of equipment is involved, make sure to clarify the purpose and procedure to ensure optimum cooperation.

More Information:

Height & Weight

Professionals must listen to the person AND the people who support them - - use advance information, prepare before the appointment

Taking the height and weight of patients with ASD may pose very little challenge to them as they are familiar routines in the home. However, the equipment may differ from the instruments the patient is used to. The patient may not recognise your instruments and this could cause confusion and anxiety. Be clear in your explanation and demonstrate what the patient needs to do and how the instrument will provide a reading.

When the patient is a child, you may need to enlist the support of their parent/carer to be weighed with them, or use a wall, doorframe or visual height chart to provide a height measurement.

Reflexes

Ensuring information is given clearly; repeat and check has been understood - recognise information processing may be slow especially if stressedEliciting the reflex response may cause puzzlement and anxiety to the patient with an ASD. It could be difficult to undertake if the patient is not fully relaxed . A high degree of skill may be needed in this situation.

A slow and careful approach with an explanation will be helpful to the individual. Demonstration of the procedure on a parent/carer may be helpful. A fuller explanation of why the body responds at reflex points without our conscious desire will also help the able patient with an ASD to accept the approach.

Other checks

The process of gaining medical information may also include other measurement such as that of head circumference.

The guidance given so far will help to compose questions that will elicit clear and literal answers. Where any kind of instrument, measure or piece of equipment is involved, keep the guidance in mind to help clarify the purpose and procedure to ensure optimum cooperation.

Taking a medical history

This should be approached in a logical and systematic way. The basic guidelines of clear literal questions will help to compile an accurate record.

Patients with an ASD may have a poor or incomplete memory of their childhood and it may be necessary to ask for another source of this information. Questions about childhood diseases and infections may not be understood; give fuller information if you can.

Patients with an ASD may have very accurate information on dates and times when they needed to be admitted to hospital, but a sketchier memory of why. If this information is needed it may need to be followed up.

Practical Strategies

  • Keep your voice even and measured.
  • Ask factual questions to help determine patient circumstances e.g. ‘Have you had this rash before?’ or ‘Have you recently been abroad and where?’
  • Do not ask for information that requires interpretation.
  • If the patient with an ASD does not know, ask them for another source, e.g. a family member.
  • Avoid questions that require them to surmise or take someone else’s point of view.

Physical Examinations

The patient with ASD may need a physical examination. Ask the patient or their parent/carer if they have had that procedure before, e.g. an ear, nose and throat examination. This will help to establish whether the patient knows what to expect in this examination and will give you guidance on whether they may react adversely. It will be helpful for patients with ASD to see what implements are to be used and to know the order in which they are going to be used. Using simple words, check if they have had that type of physical examination before.

If yes:

  • Recap on the basic procedure and tell the patient the order in which it is going to proceed.
  • Show the patient the basic implements and ask if he/she is ready.
  • Explain one task at a time and keep it simple to avoid causing stress.
  • Talk quietly to the patient telling them what you are doing as you undertake the task.

If no:

  • Show each implement in turn and explain where it will be placed and what for, in simple terms.
  • Put each implement in a visual order so that the patient can anticipate what is coming next.
  • Use numbers/colours to reinforce that order if needed.
  • Start with the least intrusive implement/examination.
  • Repeat and reinforce the order of the examination in clear simple terms as it proceeds.
  • Remove each item in the visual order as it is used.
  • Be prepared to postpone the examination if the patient becomes distressed.

Types Of Physical Examination

The same general principles apply whatever kind of physical examination is to be carried out

Blood pressure checks

The taking of a blood pressure reading can follow the basic guidelines of asking, checking, explaining and reinforcing. The feeling of the cuff, whether manually or electronically inflated, may need a demonstration and further explanation in order to prepare the patient for the constriction of his/her arm. Show the patient the equipment and explain in simple terms what is going to happen. Ask the patient to tightly squeeze his/her arm to demonstrate how the cuff will feel. If using a manual device it may be helpful to demonstrate the noise the monitor will make when it is used.

Take guidance from the patient or their parent/carer on how to proceed. For patients with ASD who can understand, a basic explanation about the instrument may also be beneficial.

Temperature checks

Measuring body temperature will be greatly eased by using one of the types of non-intrusive thermometers.

Children with ASD will be familiar with the use of forehead checking in the home, but it may be wise to check with their parent/carer first on how temperature is taken. As with other procedures, ask, check, explain and reinforce before beginning the taking of temperature.

Visual checks

For visual checks on eyes, hands, nails or glands, make sure the patient with ASD knows what is going to happen before you approach them to start the examination.

Practitioners need to show the patient by demonstrating on themselves or the patient’s parent/carer, exactly where they will be looking and where they will be placing their hands.

Full Physical Examination

A full physical or intimate examination requires a degree of intrusion which can make the patient feel vulnerable or uncomfortable, and may cause pain or discomfort.

The patient with ASD may require preparation in advance, particularly if the situation is unfamiliar. Give a double appointment to ensure that there is enough time to conduct the procedure and to minimise any stress which could prohibit a successful examination.

Be prepared to postpone the examination if there are signs of distress.

Supporting the patient

It is important that you as a practitioner secure the comfort and confidence of a patient with ASD before you start a procedure. Failure to do that may mean that the procedure has to be postponed because the patient is too upset.

Take the lead from patients, checking if they are able to articulate how they are feeling, and that they know how to stay calm.

Always ask the patient first, but if that does not work, ask the parent/carer how to approach the patient.

Engaging the family/carers

The patient with an ASD may need extra time for an appointment. Show the patient and family member/carer what you are going to do. It might be helpful to suggest in advance to family members/carers that a preferred activity or routine could follow the procedure and that the person knows this will happen. Use the family/carer’s approach as a guide when interacting.

Understanding

  • Help the parent/carer understand the condition.
  • Direct family to resources that give advice on toileting, relaxation techniques, food and diet, sleep and dealing with anxiety. These are available elsewhere on this resource. (see Impact of ASD)

After The Consultation

Afterwards

Provide a written summary after the appointment for the patient. Check if this needs to be shared with the family/carer.

Treatment

The process of undertaking treatment can be problematic for adults with ASD. The skills needed may be limited for adults with ASD and this can cause a treatment plan to fail. Individuals may need support to:

  • Select the most appropriate treatment option for them
  • Regard treatment as a priority (and recognise its relation to the patient’s state of health)
  • Understand treatment instructions
  • Remember when treatment is scheduled
  • Have the practical skills to follow treatment, e.g. dexterity to apply ointment
  • Have the discretion to judge when treatment should be followed rigidly, e.g. anti-depressants, and when flexibly, e.g. skin creams
  • Assess whether the treatment has been beneficial.

Practical Strategies

  • Explain clearly but simply the implications of different treatment options.
  • Explain the consequences of declining treatment or following treatment incorrectly.
  • Give clear instructions, supported by written or visual forms.
  • Supervise the patient taking initial treatment to assess competency.
  • Provide a medication box or other means of prompting.
  • Agree how treatment is to be monitored so that the patient is not reliant on recall, e.g. a brief diary to be completed daily.
  • Agree a clear follow-up plan.

Follow-up Action Plan

An effective follow-up plan is vital for the adult with ASD.

Under normal circumstances the onus would be on the patient to follow up an appointment and/or flag up any problems, but this cannot be relied upon for individuals with ASD. As above, treatment can fail for many reasons and at any stage. A clear follow-up strategy will provide a vital safety net.

Practical Strategies

  • Seek the patient’s permission to involve others in the monitoring of treatment, whether this is parent/carer or partner.
  • Provide the patient and/or parent/carer with a summary of key points in writing. This will enable the patient to revisit and clarify these points as necessary.
  • Agree a strategy of what the patient should do if treatment is not effective, including clear guidance on how long recovery is expected to take.
  • Where treatment involves a number of meetings, follow a similar format at each appointment to provide structure and clarity.
  • Remind the patient of their upcoming appointment with a telephone call or letter; consider text or email, if preferred communication option.

Medication

The majority of people with ASD will have taken oral medication at some point in their lives, even if it is only basic pain relief. For some, taking a range of supplements orally or ingesting tablets will be no problem.

Ask the patient or their parent/carer how they would prefer to take their medication. Be specific about explaining how tablets may be taken. It could be that a liquid would be preferable. Ensure that the dosage is explained clearly and give other verbal or written information on what to do if the symptoms persist.

“Consider providing easy-read information leaflets for medication”

Ointment

You may have to make a judgement on the likelihood of the ointment staying on the body area for long enough to be effective. Where a patient with ASD is bothered about personal invasion then the prescription of ointments may not have the desired outcome. Taking guidance from the patient or their parent/carer will inform your decision.

Ensure that the dosage is explained clearly and guidance is given on how much to apply. Give other verbal or written information on what to do if the symptoms persist.

Skin Sensitivities

  • Ask if the patient reacts strongly to textures and sensations on the skin.
  • Observe how comfortable the patients are in their clothing and how they respond to touch
  • If there is no/little sensitivity:
    • Explain about the prescription of cream/ointment and how to apply it
  • If there is sensitivity:
    • Ask about previous prescription of cream/ointment
    • Suggest disguise or subterfuge – e.g. under a bandage or stocking, or only at night
    • Consider oral medication to combat symptoms

Liquid/Medicine

It may be unlikely that patients with ASD have not had oral liquid medication in their lifetime.

However, the adult with an ASD may need the same consideration of taste and smell that could apply to a much younger person. Heightened sensitivity to taste and smell may make stronger/more adult medication hard for them to ingest. Consider prescribing a more child-friendly medication or look at other forms of prescription, e.g. tablets or capsules.

Parenteral

Intravenous medication is usually only given in practice in an emergency such as a life-threatening anaphylaxis or severe pain. In this situation there would be no time to condition the patient to the procedure. It is therefore best performed quickly and efficiently by an experienced practitioner.

Vaccines are given by intramuscular injection and most of these schedules will occur prior to diagnosis of ASD.

Vaccinating older individuals may pose a challenge. Local anaesthetic creams applied prior to the procedure may reduce pain

Other

The administration of any kind of medication requires thought and flexibility on the part of the medical practitioner. Techniques and strategies that are normally used with much younger individuals may still be needed for adults with ASD and this should not be seen as demeaning or inappropriate. If the net outcome is that the patient accepts medication, then that is a successful conclusion.

  • Ask what the patient is taking/has taken.
  • Take time and care.
  • Tailor your prescription to what is familiar, if possible

Suspected ASD: screening & assessment

There is currently no medical test to confirm a diagnosis of ASD. The first stage is to screen for autism and to decide on whether further detailed clinical assessment is appropriate.

Autism may be difficult to detect, since it presents differently in individuals and may be masked by the presence of other conditions (e.g. Learning Disability, Down’s syndrome or ADHD). Many adults present for a late diagnosis because of the limited knowledge about autism during their childhood or because they have particular skills which have masked their difficulties. Screening tools are available to practitioners to assist in decision-making.

Establish with the individual, family and carer the reasons for referral and possible benefits. Appropriate referral and diagnosis may enable access to appropriate interventions, services and information. Explore particular concerns of the individual, parents or carers. Note the range of possible verbal and non-verbal behaviours that are currently present or described during development. These may vary, depending on the age of the patient and level of intellectual ability.

There are leaflets on the homepage which you can download for more information.

Suspected ASD: Screening And Onward Referral

Here is information on what you can do to help and support the individual, a family or carer when there are concerns that your patient may have an ASD, and onward referral for a diagnostic assessment may be necessary.

Referral

Refer to the relevant team for multidisciplinary assessment in your area. NAPC (National Autism Plan for Children) and SIGN set out procedures for multidisciplinary assessment for children and young people. Refer to the NICE Guidelines (2012) and Quality Diagnostic Standard (QDS 2006) for information regarding adults.

Linking

Families and carers can find it difficult to maintain contact with a range of professionals. It is helpful if they can come back to the GP as a link person. If the person has been referred for multidisciplinary assessment, it is useful if the GP stays fully informed about progress with the assessment, through links with a key-worker. Where the patient is an adult without learning disability, gain consent for information to be shared with parent or carer to ensure onward referrals and appointments are managed.

Listen

Parents/carers are often told to ‘wait and see’ if they are concerned. If a parent expresses concern, there is likely to be a strong basis for this concern. Early diagnosis may improve outcomes so find out the nature and timings of the first concerns, professionals that have been seen, views of the wider family, feelings about advice they have been given to date.

Support Literature

See section on Identification and Diagnosis for more information.

See Case Study: Adult - Susan

Stress, Behaviour & Mental Health

Stress And 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

Effects of stress and anxiety may interfere with the way a consultation is received and understood, for example:

  • 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.

Symptoms Of Stress And ASD

The interaction between symptoms of stress and the symptoms of ASD will affect identification and treatment:

  • Reactions to anxiety states may lead to challenging behaviour, violence and self injury.
  • Phobias may be masked by panic reactions and the individual may be seen as aggressive, challenging or socially avoidant.
  • Depression may be misinterpreted as social withdrawal or regression.

Atypical Indicators Of Stress

Sarah’s Story

Sarah is sixteen years old. She has ASD and moderate learning difficulties and has come to see you for ongoing treatment. A keyworker from her care establishment has accompanied her on previous visits but the keyworker often varies. Sarah has come with someone who knows her very well this time but Sarah is responding as if it is her first visit. She asks your name and your date of birth. She appears anxious and is unwilling to sit down or answer your questions. Each time you begin to ask her how she is feeling, she talks over you and does not let you finish. She appears to have a fascination for dates and birthdays and lists of dates are what she keeps repeating.

Practical Strategies

  • Ask Sarah if she will take turns in speaking with you; let her start by having a minute to ask you questions as this may help her become calmer.
  • Have a concrete object that symbolises whose turn it is to talk (e.g a pen or paperweight) and let her hold it first during her turn. Try to ensure you use the same object for each appointment.
  • Enlist the help of her keyworker.
  • Ask to hold the object to signify that it’s your turn to talk.
  • Involve the keyworker in having a turn so that they can add any relevant information.
  • Continue in this way until you have asked the necessary questions.

Honey’s Story

Honey is a 30-month old child on the autism spectrum who attends the appointment with her childminder. She has been rubbing her eyes a lot and has developed an infection in both eyes. Honey’s parents and childminder do not know why Honey has been rubbing her eyes so much, but it is often when they go into brightly lit places – like the local supermarket and the shopping mall.

Practical Strategies

  • An eye examination needs to be undertaken.
  • Before examination, allow Honey to feel and hold the equipment with her childminder’s help.
  • Use your judgement on how to approach Honey – ask, check, explain, repeat - and discuss your approach with the childminder.
  • Discuss details of when Honey is rubbing her eyes and where she is looking as she does it.
  • Suggest that the childminder and parents keep a log of the exact circumstances when Honey rubs her eyes in order to establish patterns, identify possible environmental causes and monitor whether Honey seems uncomfortable or stressed when it occurs.
  • Discuss possibility of visual sensory overload.
  • If possible sensory overload, discuss whether Honey needs to visit such venues and/or mediation of the effects e.g. wearing baseball cap, sunshade or sunglasses or providing an activity for Honey that might mediate the effects of bright lighting.

Indicators Of Stress Include:

  • Repetitive actions – (e.g. Honey’s story above)
  • Head banging
  • Rocking
  • Twiddling twirling
  • Obsessions and special interests
  • Extremes of emotion
  • Need for the familiar (e.g. Sarah’s story above).

For these and other atypical behaviours, it will be necessary to establish:

  • Whether this is a new/different behaviour
  • If it follows a pattern related to events, people, circumstances
  • Changes in responses
  • The frequency of the behaviour
  • The severity of the behaviour
  • Any physical harm resulting from the behaviour (may require physical examination)
  • Whether the behaviour relates to sensory sensitivities.

Mental Health Problems 

Indviduals with ASD are more likely than others to suffer from a range of mental health problems (e.g. anxiety, depression, bi-polar disorder). These may be acute or chronic.

A level of anxiety is chronic in ASD but it can increase and lead to additional high anxiety states, which may manifest as:

  • Phobias
  • Separation anxiety
  • Obsessive compulsive disorder
  • Eating and sleep disorders.

Differentiating symptoms

Obsessive compulsive disorder (OCD) may be confused with autistic obsessions.

  • Autistic obsessions usually decrease anxiety and give pleasure to the individual.
  • OCD increases anxiety and has a ‘compulsive’ quality.

Eating disorders may be confused with ‘faddiness’ and the rigidity over food intake that is typical in ASD (e.g. only eating foods of a certain colour, texture or brand):

  • Anxiety and the need for control may take ‘autistic’ rigidity over food intake to a dangerous level, even anorexia nervosa.
  • Obsessive interest in food and poor impulse control may lead to extreme over-eating.

Identifying mental health problems in individuals with ASD is particularly difficult.

The person with an ASD may have little self-awareness so the practitioner cannot rely on verbal reports and has instead to infer the mental health problem from behaviour.

There may be confusion with symptoms of ASD.

Identifying mental health problems

Practical Strategies

  • Get a good idea of concerns from the individual, family and carers.
  • Establish what aspect the individual wants to address.
  • Ask for concrete examples about behaviour and functioning.
  • Be aware that non-verbal behaviour may be in stark contrast to the level of difficulties and distress experienced by the individual.
  • Gather information from a range of sources about what has helped in the past.
  • Establish what resources the individual has, including personality factors and family support.
  • Agree with the individual and family to monitor the situation for a particular period.
  • Consider and discuss onward referral where necessary.
  • Be aware of the possible idiosyncratic responses to medication.

Treatment For Mental Health Problems

Mental health problems may be helped by medication but behavioural and educational methods can also be effective, either on their own or in conjunction with a temporary period of medication.

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