Nursing People On The Autism Spectrum

Current Literature

When examining this subject one motivator was to bring attention to the lack of current literature. The National Autistic Society (NAS 2008) has one information sheet on this topic, which in turn has only one reference Kagan-Kushnir.T, Roberts S.W and Snead O.C (2005). This is a study of the use of screening electroencephalograms (EEGs) in Autistic spectrum disorders and does not deal with nursing issues.

 Other further reading suggested by the NAS is Fay (2004) and Shellenbarger (2004) however; both these articles are not generic and are not UK specific.

  Fay (2004) is a leaflet that describes some good practical tips for health practitioners. It covers five key steps when a health care visit is imminent for someone with Asd. Theses are Assessment, Consult, Planning, Be familiar and Implement. What was in this leaflet was the sentence-

 ‘It is essential the health care team be creative, keep their sense of humour and when possible prepare in advance.’ (Fay 2004)

 Shellenbarger (2004) is a case study that brings some of the issues to life. There are some facts about Asperger syndrome, some strategies for intervention, dealing with stressors and administering medication.

 The only book discovered has been by Alison Morton –Cooper (2004) which looks at some of the issues to consider from medical appointments to screening and check ups.

 Aylott (2001) is an excellent article that looks at trying to put you in the position of someone with autism. She states-

 “. lack of positive autism awareness has led to individuals with autism being oppressed within environments that can cause harm, anxiety and distress”

  Jill Aylott clearly understands the world of people on the spectrum and this quote can easily relate to health environments such as hospitals, health centres and community-based facilities. She includes with a table of issues to consider for staff working with people with autism from some literature by Peeters (1999). This is generic advice but applies to nursing staff.

 Autism Spectrum Disorders/ Conditions

 Autism Spectrum disorders/conditions (or referred to as Autism) were first described by Leo Kanner in 1943 and Hans Asperger (Asperger syndrome) in 1944.

 “The National Autistic Society estimates a prevalence rate of 91 per 10000 of the population for an autistic spectrum condition. With an average GPs list of 2000 people, every family doctor is therefore likely to have up to 18 people with autism on their list “

 (National Autistic Society 1999).

 Autism Spectrum Conditions (ASC), which includes autism, is receiving a greater profile than it has for many years mainly due to the MMR (Measles, Mumps and Rubella) vaccine controversy of the early 2000s. The link of these jabs to the development of ASC has led to many parents investigating what is this condition. Moreover, what are the risks associated with them? To date the claims that MMR causes ASC have not been much substantiated yet the uptake of jabs has been poor. Therefore, what is this ‘frightening’ condition and how does it affect Nursing.

 Autism Spectrum Disorders/Conditions is a term used to describe a livelong developmental disorder that has a range (or spectrum) of features including autism and Asperger syndrome. (National Autistic Society 2006). All people with ASC are diagnosed by and experience three main areas of difficulty known as the ‘Triad of Impairments’ –

 -Social Interaction (e.g. social relationships, indifferent, aloof and not understanding others viewpoints)

 -Social Communication (e.g. verbal and non verbal understandings)

 -Social Imagination/flexibility (e.g. play, imagination copied rigidity and repeating)

 (Wing 1996, NAS 2008)

 Social Interaction

People on the Autistic Spectrum often present as being egocentric or lacking empathy. This self centred and demanding behaviour can be problematic.

There is often Social isolation amongst peers, regarded as odd or eccentric can result in the behaviour of children sitting on their own on the edge of a group or a playground. There is also tension when social demands or approaches are placed on the person with ASC. Anxiety in social situations, crowds, birthday parties and Christmas is common.

 There is failure to pick up on social clues and unwritten rules and behaviour such as talking inappropriately –not in context, no turn taking, talking excessively or no talking by electing to be mute can happen.

 Often there is inappropriate social use of language, in the wrong context or situation e.g. laughing inappropriately – An example such as saying “Scoring a goal” means they are excited.

 Social Communication

People on the Autistic Spectrum can have ‘superficially’ perfect spoken language. They can have the understanding of words rather than their meanings. Rote script and language that is monotonous and repeating can occur. A persons voice may lack expression or have peculiar characteristics such as copying of expressions, videos, adverts which can be spoken out of context. There can be a highly literal understanding of language and Jokes using innuendo and irony are fort with problems. An example is the phrase “draw the curtains” which can be interpreted in two ways.

There are difficulties in understanding and expressing non-verbal communication such as gestures. Sometimes people with Asd can present with flat facial or eye expressions resulting in a glazed ‘lifeless’ face.

 Social Imagination/Flexibility

People on the Autistic Spectrum can have unusual all absorbing interests such as using computers, spinning objects, even tidying up! They can have a strict adherence to certain routines (In a certain order and time, unable to change) and be inflexible with these.Often there will be a limited development of play and creative thought and a difficulty in imagining as something else – to visualise this.There can be problems in generalising skills that is they can perform a task in one environment and not in another.

 Sensory Difficulties

Many people on the spectrum suffer from sensory processing difficulties such as hyper (over) or hypo (under) sensitivities. The effects of these can be profound and be very distressing to a person with ASC. Some examples are-

Hearing -People being oversensitive to different pitches of noise, ‘high’ pitch e.g. whistle bagpipes etc. or almost not hearing being hypo sensitive.

Smell- People having a reaction to acute/certain smells e.g. perfumes or not having much of a sense of smell at all.

Sight – People having a reaction to certain colours, patterns, lights and becoming stimulated or upset by them.

Touch – People being sensitive to textures (clothes, surfaces, foods) can cause great distress. Touch may be under developed and there can be a high pain threshold.

Taste -People on the autistic spectrum can be seen as ‘Fussy’ eaters because they find tastes intolerable. They may be particular over textures and colours eat inedibles or prefer acute tastes such as spices.

 Bogdashina (2003)

 hese sensory difficulties are very significant when creating an autistic friendly environment for any patient that needs nursing care.

People with an Autism Spectrum Condition can also display some behaviour that challenges services.

Examples of behaviour are-

Running away, problems with transition, Destructiveness,

Indiscriminate arousal,

Lack of motivation,

Aggression, Eating problems,

Sleep problems

Depression,

Rituals/obsessions,

Withdrawal, Self-injury, Fear, panic, anxiety and phobias.

To address these behaviours a preventative approach is best and should include understanding the sources of behavioural difficulties in Asc and structuring the environment for prevention. Best practice should include providing an effective means of communication and have clear verbal/written/pictorial rules. Perhaps importantly, an approach should include building in positives to their lives.Some people with ASC have severe learning disabilities whilst others such as those with Asperger syndrome have average or above average intelligence.

 Jordan (1999) estimates

 “…up to 75% of all people with autism may present with general learning difficulties that is with an IQ below 70”

 It is worth noting that it is very rare for people with ASC to have special abilities such as those portrayed on the movie ‘Rain Man’. Many people have also never been diagnosed as the disability can be somewhat hidden.

 The ‘difficult’ odd often-eccentric man who was a nightmare to care for because he would not stop talking about his interest (Star Trek or Computers or his Collections) maybe on the spectrum.

 Some famous celebrities throughout history have thought to perhaps have ASC characteristics such as Albert Einstein and Bill Gates (Head of Microsoft Computers). The condition is predominately male with a ratio of 4 in 5. The exact cause is still unknown yet the National Autistic Society (2006) estimates it touches the lives of over 500,000 families in the UK alone. With that kind of figure, it will be inevitable that most nurses will have some contact with a person with an Autistic Spectrum Condition.

 The Impact on Nursing

The impact on Nursing needs to be considered and how patient care could improve from what you now know about Autistic Spectrum Conditions. The challenges and possible solutions as an individual and/or part of a team may include- Training, Planning After care /discharge and Multi agency working.

Morton-Cooper (2004) dedicates a chapter in her book examining nursing care issues. She suggests skill and sensitivity in observing the patient is needed to see where the person with ASC vulnerabilities lies. She continues by suggesting Roper Logan and Tierney (1996) activities of living nursing model to support this. The activities are-

 

Maintaining a safe environment
Communication
Breathing
Eating and Drinking
Elimination
Personal Care
Controlling Body Temperature
Mobility
Work and Play
Expressing Sexuality
Sleeping
Dying

 

“People on the autism spectrum may have contributing factors that make care decisions more complicated. Sleep disorders and hyperactivity or conversely, extreme slowness of movement to the point of catatonia can have implications for care and treatment of medical problems “

 (Morton-Cooper 2004)

 Significant Nursing issues include problems managing personal hygiene, self care, patient safety, nutrition, eating difficulties, wound care, sleep, and night time wandering and dying.

Personal Hygiene –Difficulties with washing and maintaining personal hygiene will take skilled nursing care to ensure any infection or cross contamination. Some people with ASC may not even acknowledge different aspects of their bodies. The management of menstruation may need specific attention.

Safety-The boundaries need to be made clear to the person with ASC. This could be the physical parameter of a ward to the rules about what not to touch.

Nutrition- People on the Autism Spectrum can have specific dietary needs/preferences. The textures and colours of foods and the habitual order of eating can limit diet. There can therefore be certain nutritional deficiencies in patients. Specific Advice should be sought.

Wound care- if the person has touch sensitivities they may not tolerate dressings and/or scratch wounds.

Sleep/Night time wandering- many people on the spectrum have problems with sleep. Difficulties can include intolerance of bedding, sensitivities to sound, not being able to relax and limited motivation to sleep.

Dying-The concept of death can be confusing for many people. The person with ASC may not always respond with a common emotional response and could even seem aloof. There is limited literature on this subject.

The quality of aftercare and discharge planning needs to be thorough to avoid re admissions and effective multi-agency input is vital.

Awareness

There are few pieces of work, articles are written about ASC and nursing so, it is vital to bring awareness of this issue. There is also limited training that nurses received to deal with disability issues let alone Autism Spectrum Conditions. Most nurses would say none or ‘not much at all’. Depending where you trained, what part of the country you live in (for example if there are specialist ASC services established in your area) or what branch of nursing you are in, the experience will differ. Mental Health and Learning Disability Nurses maybe more aware of ASC issues and with the recognised incidence of people with Asperger syndrome with the prison population forensic/prison nurses are becoming more knowledgeable. Another issue has been where to treat patients with ASC, in respect of what service they should access. Depending on the NHS trust or area you are served by may determine this. This can be Mental Health, Learning Disability, Generic or a combination of these services.

Discussion and Implications for practice

For people with a diagnosis of Asperger syndrome that has an intellectual ability of average or above this can be confusing. Some people think that as ASC could be considered a social disability and people on the autistic spectrum should be treated in disability services however many people with Asperger syndrome reflect on this as a difference rather than any deficit.

Those NHS trusts with no clear ASC service or policy on this could result in many nurses receiving referrals or admissions of anyone with an Autism spectrum condition. Many will be unprepared due to a lack of knowledge and training resulting in stress for all including a poor patient experience (See Case Study)

People with Autism Spectrum Conditions will continue to access mainstream services whether that being Accident and Emergency, Community health centres or Inpatient facilities. Some will be treated by specialist professionals with knowledge however most will not. The NHS including the nursing profession needs to take action by-

 

Including basic training on ASC for all nursing students

 

Any nurse working in any form of community or outpatient facility should reflect on their knowledge of ASC and update their practise.

 

All nurses need to consider how ASC friendly their health care environment is, taking into account that, the more suitable, the better the service and experience.

 

Recognising people with ASC cannot be excluded from health care; this population will continue to increase, as there is no cure for Autistic spectrum disorders.

 

The consequence for the NHS if this group of people continue to have difficulties accessing health care no doubt is a huge financial burden. Without adequate access to screening programmes, people with continue to develop poor health that could have been avoided.

There are a number of suggestions to help if you are presented with a person with an Autism spectrum condition in your care. They are-

Get a full history from the person or someone who knows the person with an Autism Spectrum Condition well.

Take note of the person with ASC s likes and dislikes including any sensory difficulties, routines and obsessions. These are very important to them!

Note: The patient may be hypersensitive or hypo sensitive to pain. Carry out a thorough pain assessment.

Examine the care environment. Use an environmental checklist to recognise any potential problems if possible.

People on the Autism spectrum can have problems with interpretation of language. They sometimes interpret phrases literally therefore avoid any slang, sayings e.g. as good as gold, as light as a kite

Listen to and get help from specialist practitioners.

Allow extra time for appointments and avoid the person with ASC the minimum waiting times.

People with ASC often find change difficult therefore, you need to plan transitions. Even moving a patient to the other side of a ward may be problematic.

(National Autistic Society 2008)

Below is a case study that illustrates the practical difficulties that exist in real situations.

Peter (fictitious name) is 17 years old and lives in a large city in the UK. He has a diagnosis of an Autism Spectrum Condition and a moderate learning disability. He is a permanent resident at a Children’s Home run by Social Services. Due to not being able, to communicate his needs through articulate verbal expression he had on occasion displayed some challenging behaviours.

Six months ago, staff at the home became increasingly concerned about Peter developing some self-harming behaviour. This was hitting himself with his fist in the face and banging his head on the wall. The occurrence of this seemed to be ‘out of nowhere ‘and increased in intensity and frequency over a short period.

In the crisis, staff that were not ASC trained immediately referred to Learning Disability Nursing and CAMHS (Child and Adolescent Mental Health Service) psychology and psychiatry. Peter was diagnosed as experiencing a serious psychotic episode and needed specialist inpatient help.

He was sent quickly to Accident and Emergency to treat the horrific injuries that Peter had inflicted on himself. Unfortunately A&E staff had had no ASC training and with Peter already in a distressed state were unable to recognise how their actions could have an impact on someone on the autism spectrum.

 Factors such as-

Too much noise
Too many people
Inappropriate communication
Touch sensitivities

all made the situation more traumatic.

 

After eventually getting Peters dressings completed for his wounds, he now needed to be transferred to an inpatient mental health facility. In this city, however there was no Children’s Learning Disability Mental Health provision and could not access Adult Services, as he was not 18years or access Children’s Mental Health services. Peter ended up on generic adult mental health ward.

There Peter continued to become more and more distressed. Staff admitted they had no training in ASC. Peter was sedated most of the next couple of weeks until Adult learning disability services agreed to treat him.

Would you know what to do if Peter ended up in your care?

 

Conclusion

 

This article examined the current literature on nursing and the autistic spectrum. Although there are no specific nursing articles there were, some very good information aimed at health care professionals from other countries.  To bring these pieces of work together is valuable to see the whole picture of the challenge nursing faces.

The care of the person with an Autism Spectrum Condition is a test for the nursing profession. It is one that needs to be embraced rather than feared. There is an obligation to provide a quality service equitable to any NHS user.

The patient with an Autism Spectrum Condition is something the Nursing profession needs to get to grips with. This can go unnoticed and undiagnosed. Effective communication skills and knowledge are essential therefore in implementing quality care.

The most important issues to note are-

The lack of knowledge and subsequent training for nurses in this area,

The poor un friendly clinical areas for people on the autism spectrum

However, more importantly the great health inequalities that exist in this patient group.

 

Stephen Simpson RNLD B.phil (Autism)

 

References-

Attwood.T (1998) – Asperger Syndrome: a guide for parents and professionals. Jessica Kingsley publishers. London.

 Aylott.J (2001) - Understanding and listening to people with autism. British Journal of Nursing Vol.10 (3) 166-172

 Aylott, J (2004)-Autism: developing a strategy for nursing to prevent discrimination. British Journal of Nursing Vol.13 (14) 828-833

 Bogdashina. O- (2003) -Sensory Perceptual Issues in Autism: Different Sensory Experiences – Different Perceptual Worlds, Jessica Kingsley Publishers. London

Clements, J. and Zarkowska, E. (2000) - Behavioural concerns and autistic spectrum disorders: explanations and strategies for change.  London Jessica Kingsley Publishers

 Fay .J – (2004) –Autism Steering Committee, North Shore-Long Island Jewish Health System-Your next patient has autism. Bethpage NY, Linder Center for Autism.

www.northshorelij.com/body.cfm?id=2851 (accessed 02/09/2005)

 Jordan.R (1999) – Autistic Spectrum Disorders: An Introductory Handbook for Practitioners, London, David Fulton.

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

Morton Cooper. A (2004) – Health Care and the Autism Spectrum: A guide for Health Professionals, Parents and Carers. Jessica Kingsley Publishers. London

National Autistic Society (1999) –Factsheet; Autistic Spectrum Disorders-An Introduction for GPs. National Autistic Society. London.

National Autistic Society (2006 a)-Information sheet: What is autism? National Autistic Society. London.

National Autistic Society (2006 b) – Information sheet: What is Asperger syndrome? National Autistic Society, London

National Autistic Society (2008) –Information sheet: Patients with autistic spectrum disorders: information for health professionals.

Ngugen.A (2006), Creating an autism-friendly environment, The National Autistic Society, London.

Peeters .T (1999) – The training of professionals and parents in autism. In Peeters T, Gilberg C eds. Autism: Medical and Educational Aspects. Whurr publishers. London.

Roper, N., Logan, W.W. and Tierney, A.J. (1996) –The Elements of Nursing: A Model for Nursing Based on a Model of Living (4th Ed). Edinburgh: Churchill Livingstone.

Shellenbarger .T (2004) - Overview and helpful hints for caring for the ED patient with Asperger‘s syndrome. Journal of Emergency Medicine 30(3), pp278-280

Wing.L (1996)-The Autistic Spectrum; a guide for parents and professionals. Constable and Robinson. London.

 

Stephen Simpson 2009