Patients with autism spectrum disorders: information for health professionals

This information sheet is aimed at all health professionals who may come into contact with an adult or child with autism for reasons other than their autism. Doctors, nurses, paramedics, dentists and opticians may find this useful. Much of the advice in this information sheet will also be of use to hospital staff who are caring for an in-patient with an autistic spectrum disorder.

'Autistic spectrum disorder' is a term used to describe a lifelong developmental disorder that is characterised by impairments in social interaction, communication, and social imagination. There is a 'spectrum' or range of disorders with these features, including autism and Asperger syndrome.

Some people with an autistic spectrum disorder have severe learning disabilities, and some may never speak. People with Asperger syndrome, on the other hand, usually have an average or above average IQ, and acquire spoken language at the same age as typically-developing children.

All people with an autistic spectrum disorder (ASD) experience three main areas of difficulty, known as the 'triad of impairments':

social interaction (difficulty with social relationships eg appearing aloof and indifferent to other people and difficulty with understanding others' viewpoints and intentions)
social communication (difficulty with verbal and non-verbal communication)
social imagination (difficulty with interpersonal play and imagination eg having a limited range of imaginative activities, possibly copied and pursued rigidly and repetitively).

In addition to this triad, repetitive behaviour patterns and resistance to change in routine are often characteristic. They may also be hyper- or hyposensitive to sound, touch, pain, lights etc.

Children and adults with an ASD have illnesses and physical or emotional problems just the same as everybody else. There are over 500,000 people with an autistic spectrum disorder in the UK so it is likely you will come across people with an autistic spectrum disorder during your career.

Appointments

Try to give the patient with an ASD the first or last appointment of the day. People with an ASD find waiting around for an appointment extremely stressful.
Waiting in busy hospital corridors will increase the stress levels of an already anxious child or adult.
If possible, find a small side room the family can wait in.
Alternatively, they may prefer to wait outside or in the car and a member of staff should be identified to collect them when the health professional is ready. If the appointment is likely to be delayed, the family may wish to leave the building completely and return at a later agreed time.

Talking to patients with an ASD

Medical procedures

Always explain what you are going to do before starting any procedure or examination.
If possible, show a picture of what is going to happen or use a doll (if appropriate) to explain what you are going to do.

Your language

Use clear simple language with short sentences.
People with an ASD tend to take everything literally. Thus, if you say "It will only hurt for a minute" they will expect the pain to have gone within a minute.
Make your language concrete and avoid using idioms, irony, metaphors and words with double meanings, eg "It's raining cats and dogs out there." This could cause the patient to look outside for cats and dogs.
Give direct requests, eg "Please stand up." If you say, "Can you stand up?" this may result in the person staying seated or the answer "yes", as the person with an ASD may not understand you are asking them to do something.
Check that they have understood what you have said - some people with an ASD may speak clearly but can lack full understanding.
Avoid using body language, gestures or facial expressions without verbal instructions. These may not be understood.
Ask for the information you need. A person with an ASD may not volunteer vital information without being asked directly.

Physical examinations

These may prove very stressful to the patient and it is essential to warn them before touching them.
Explain what you are doing and why.
Enlist the parent/carers help wherever possible, especially if the patient is non-verbal or uses an alternative communication method or aid.

Response by patient

Don't be surprised if the patient doesn't make eye contact, especially if he or she is distressed. Lack of eye contact does not necessarily mean they are not listening to what you are saying.
Allow the patient extra time to process what you have said.
Don't assume that a non-verbal patient cannot understand what you are saying.
People with an autistic spectrum disorder find it difficult to understand another person's perspective. They may not understand what you intend to do, but may expect you to know what they are thinking.
People with an ASD may not understand personal space. They may invade your personal space or need more personal space than the average person.

Sensory stimuli

Some or all of the following may apply to your patient.

Lights

Some people with an ASD are extremely sensitive to light and can discern the flashing of fluorescent lights.
Pen lights can trigger seizures in susceptible individuals. Seizures occur in 20-30% of people with an ASD¹.

Sensory overload

It is easy for someone with an ASD to be overcome by sensory overload, for example in the hustle and bustle of an A&E department. Emergency lights and machines emit high-pitched 'whistle' sounds which can be agonising to the person with an ASD.
Whereas some might withdraw (eg put their fingers in their ears, close their eyes) others 'stim'. This means to make motions such as flapping hands, rocking or flicking fingers in order to stimulate sensation or to deal with stress. This kind of behaviour may also be calming to the individual, or aid balance and posture, so do not try and stop it unless absolutely essential.

Pain

People with an ASD can have a very high pain threshold. Even if the child does not appear to be in pain, they may, for example, have broken a bone.
They may show an unusual response to pain that could include laughter, humming, singing and removal of clothing.
Agitation and behaviour may be the only clues that the child or adult is in pain.

Injections/blood tests

If the patient needs an injection or blood test, try and divert their attention elsewhere.
As before, the use of pictures or a doll is a good idea to demonstrate what is going to happen.
People with an ASD can be either under or over sensitive to pain so that some may feel the pain acutely and be very distressed whereas others may not appear to react at all.
It is advisable to assume that the patient will feel the pain and use a local anaesthetic cream such as EMLA cream to numb the site of injection.

Paramedics

Sensory issues (see 'Sensory stimuli' section above) are particularly pertinent for the paramedic.
The sound of a siren can be excruciatingly painful to people with an ASD.
Turn the siren off if at all possible.
Others may delight in being taken to hospital in an ambulance that has its siren going. It is best to consult with a parent or carer as to how the siren may affect the patient.
Some people with an ASD can be terrified by the restraints used to strap people to a stretcher. They may become extremely agitated. Try and explain why you are strapping or get their parent/carer to explain.

Accident and emergency

A&E is a very stressful experience for anybody, but for the person with an ASD it can be totally overwhelming. Not only is it a strange place, and often apparently chaotic, but the sensory experience of bright lights, bleeping monitors and other equipment, can completely overload their system causing a 'meltdown' or total withdrawal.

A meltdown occurs when someone becomes over stimulated, for example by noise, or too much information, or due to anxiety leading to a state of not being able to cope with any further incoming information and possible behavioural outbursts or withdrawal.

Allow the parent or carer to take control, as they will know the best way to calm the patient down. The patient may exhibit challenging behaviour and parents/carers should be allowed to calm the patient down.

Sometimes doctors and nursing staff ask relatives/carers to leave the room whilst giving emergency treatment. In treating patients with an ASD, it may be helpful to allow them to stay if possible. This can help reassure the patient, and will also allow the relatives/carers to give valuable information about the patient and their behaviour, if appropriate.
Inform the triage nurse that the patient has an autistic spectrum disorder so that they can be given a higher priority than would be normal. This is to minimise the time the patient has to wait.
Allow the patient and carers to use the relatives room if it is free.
Try to limit the number of staff caring for the patient predictability helps them understand what is happening to them and to identify the roles of care providers.
Allocate a key person to the patient if possible.

James had fallen off his slide and it was thought that he had broken his arm. His mother had brought him to A&E. James was very distressed by all the bright lights and activity in A&E and started screaming and lashing out at anyone who went near him, despite his mother's attempts to calm him. His mother explained to a nurse that James had an autistic spectrum disorder and it was suggested that she take him into the relatives' room where it was quiet. The nurse arranged for James to be seen by a doctor as soon as possible and stayed with James throughout his treatment.

Special notes for opticians and dentists

Going to the dentist can cause sensory overload for people with an ASD the bright light shone at the face, the noise of the drill and even the feel of cold instruments in the mouth. The strong taste of mouthwash or paste can also be problematic. Similarly, the equipment used by the optician, such as the heavy eye glasses, can be difficult for the patient to cope with.

All of this can cause the patient to have a 'meltdown' and you need to be aware that the person is overloaded and not just throwing a tantrum (see 'Accident and emergency' section for more details on meltdowns).

Plan an informal trip prior to actual treatment. The involvement of the health professional at these times is extremely useful so that the person with an ASD can get to know them, their room and any equipment, eg special chair, eye glasses.
Another option may be to allow a child with an ASD to watch while a sibling is being treated so that subsequent appointments will not be such a shock. The advice of the patient's carer will help to inform this approach.
As with injections, a doll could be given 'treatment' eg a quick eye test, dental check.
It is also a good idea to book a double appointment so that things can be taken at the patient's pace.

One NAS establishment for adults with autism borrowed medical demonstration equipment so that the service users could see, touch and examine the instruments. This gave them the opportunity to examine equipment in the safety of familiar surroundings.

Summary

A trip to the hospital, optician or dentist can be extremely stressful to the person with an ASD. They may experience sensory overload and challenging behaviour. It is important to involve the parents/carers in all aspects of the patient's care as appropriate. Adults should be allowed to make the decision regarding the involvement of parents or carers if they have the capacity.

Reference

¹ Screening electroencephalograms in spectrum disorders: evidence-based guideline (2005) Kagan-Kushnir T., Roberts S. W. and Snead O. C. Journal of Child Neurology, 2005, Vol. 20(3), pp. 197-206.