Using An Environmental Check For People On The Autism Spectrum (Part 1)
Introduction
Working in the field of autism for many years, it has continually surprised me that many practitioners and carers had not fully considered the impact of the environment on people on the autism spectrum. Some had thought the only sensory difficulty in autism was hypersensitivity to noise. Other professionals such as teachers or occupational therapists knew environments were not ideal, but were not sure where to start looking to change this.
Whilst visiting a school one day I had a conversation with a teacher who was very knowledgeable about the needs of children on the autism spectrum and very aware of the environmental impact on her class of eight children. She told me that she had been slowly completing sensory profiles on all her pupils using Olga Bogdashina’s book as a basis (Bogdashina, 2003). We agreed that these individual profiles were excellent and very thorough, although they took a long time to complete.
We discussed how the classroom was not ideal in sensory terms. Space was at a premium, noise and other distractions were numerous, and I admired how she coped and was able to get any teaching done at all. I therefore decided to consider how the environment might be assessed.
Review of the literature
Attwood (1998) argues that
”…40% of children with autism have some sort of sensory sensitivity…the incidence may be the same for Asperger syndrome”
and there are a number of other books that focus on the sensory issues for children on the autism spectrum (e.g. Godwin, Emmons and McKendry, 2005). There appears to be less literature on the impact of the sensory environment. The leaflet by Nguyen (2006) for the National Autistic Society entitled Creating an autism-friendly environment was probably the most accessible and easy to read for carers and professionals Morton-Cooper (2004) also has a chapter highlighting the clinical environment, although this was tailored particularly for health professionals.
Whitehurst (2006) described the design of a new building for children on the autism spectrum and Humphreys (2005) looked at this topic. This literature provides good background knowledge but none had an assessment tool that I could use to determine how suitable a setting was. I therefore decided to develop a checklist myself.
How to do it?
The main purpose of developing the environmental checklist was to create a tool that was quick and easy to use. It needed to be accessible by all parents/carers, professionals and people on the spectrum. I wanted it to be used to improve or enhance good practice.
The categories addressed in the checklist needed to reflect the frequently reported issues. I wanted the checklist to indicate how friendly the environment might be to someone with on the autism spectrum, and a catalyst for change.
I decided to divide the checklist into four areas:
Sensory -The sensory areas covered include touch, sight, smell, hearing, taste, balance and body awareness
Communication systems
Escape (how and where can people escape from stressful situations)
Other (factors such as financial constraints)
Each of the four areas has a number of questions that need to be answered
Yes or No
Not all questions are relevant to all environments. I decided that after each question, examples could be given and solutions suggested.
I decided not to give too specific solutions and for these to be generated through discussion. For example, carers may need to look at the mix of needs of other children or adults. Teachers may need to consider learning and the practicalities of a school day.
Everyone is an individual
There has been some criticism that each individual on the autism spectrum is different so how can you create an environment totally ASC friendly?
I would recognise this however think a check to see if all is being done to recognise the effects of the environment can only be beneficial.
In saying this however I would recognise that on occasions there can be opposing sensory preferences and sensitivities experienced by 2 or more people making the creation of an ideal environment more difficult.
An example of a completed section of the checklist is given below to illustrate its use.
Sight/Visual
Are the colours in
the environment low arousal,
such as cream and pastel shades
and not red or vibrant.? Yes or No
Consider whether all rooms /spaces need
need a change of paint or wallpaper?
Current situation
There are a variety of colours in our
room.
Approximately half of the walls are
bright pink and maybe too vibrant
for someone with autism
Suggested solution
Re-paint walls with pastel green
and ask students with
autism to choose
the colour.
Is the environment cluttered
with furniture? Yes or No
” It has been suggested that people
with ASD find it helpful if furniture is
kept to the sides of a room and the
central space is kept clear”
(Nguyen, 2006)
Current situation
Most of the room is uncluttered,
although
sometimes activities are
not tidied away properly and
materials are left out.
Suggested solution
Ensure room is left tidy at all times.
Implications for practice
As a nurse myself I can see the impact of an unfriendly environment on the wards and in the community. Patient care can be compromised and people on the autism spectrum can suffer as a result. In education, teaching staff can find themselves unable to teach and more importantly, students on the autism spectrum may be unable to learn. An environmental check has the potential to empower carers and professionals to assess their homes, wards, classrooms and other settings in relation to the individuals with autism they are living and working with to consider whether changes may be beneficial.
*There has been an initial pilot of the checklist which has been used in schools and community health teams with very positive feedback. This will continue and be further evaluated over the coming year.
Concluding comments
It would be very useful to conduct a small study to evaluate the use of the checklist and its effects. For someone on the autism spectrum, the sensory environment can have a profound effect on behaviour, stress levels, learning and task performance. Sensory profiles on the children and adults on the autism spectrum are recommended in addition to this environmental checklist, such as that provided by Bogdashina (2003).
The very nature of autism means that changing the environment may be upsetting for some people on the spectrum. However, this should not deter staff and carers from change if it is felt to be beneficial, as disruption to the environment may be minimal and short lasting. There will be practical considerations (e.g. money, time) and sometimes a clash of individual sensory profiles that need to be discussed and resolved (e.g. a person who likes the light and someone who likes the dark sharing a room). I hope this paper will prompt others to consider the environments they create and the effects on those who live and work within these.
References
Attwood.T (1998) Asperger syndrome: a guide for parents and professionals, London. Jessica Kingsley publishers.
Bogdashina. O (2003) Sensory perceptual issues in autism: different sensory experiences – different perceptual worlds, London. Jessica Kingsley Publishers.
Clements, J. and Zarkowska, E. (2000) Behavioural concerns and autistic spectrum disorders: explanations and strategies for change. London Jessica Kingsley Publishers
Godwin Emmons, P. and McKendry Anderson, L. (2005) Understanding sensory dysfunction: learning, development and sensory dysfunction in autism spectrum disorders, adhd, learning disabilities and bipolar disorder. London. Jessica Kingsley Publishers.
Howlin, P (1998) Children with autism and Asperger syndrome: A guide for practitioners and carers. Chichester. Wiley
Jordan .R (2001) Autism with severe learning difficulties: a guide for parents and professionals. London. David Fulton
Humphreys, S (2005) ‘Autism & architecture’
www.autismlondon.org.uk/pdf-files/bulletin
_feb-mar_2005 accessed 16 March 2006
Morton-Cooper, A. (2004) health care and the autism spectrum –a guide for health professionals, Parents and Carers, London, Jessica Kingsley Publishers.
Nguyen. A (2006) Creating an autism-friendly environment,London. National Autistic Society.
Plimley. L (2004) Analysis of a student task to create an autism-friendly living environment. Good Autism Practice Journal 5, 2, 35-41
Schopler. E (1995) Parent Survival Manual; A guide to crisis resolution in Autism and related Developmental disorders. New York and London, Plenum Press
Whitaker.P (2001) –Challenging Behaviour and Autism-Making sense, making progress; A guide to preventing and managing challenging behaviour for parents and teachers. London. National Autistic Society.
Whitehurst, T. (2006) The impact of building design on children with autistic spectrum disorders, Good Autism Practice Journal, 7, 1 31-39
Wing.L (1996)-The Autistic Spectrum; a guide for parents and professionals. London. Constable and Robinson.
Stephen Simpson B.Phil (Autism) RNLD
Categories: Jessica Simpson Live Tags: Autism, check, Environmental, Part, people, Spectrum, Using
Environmental Checklist For Autism Spectrum Conditions (Part 2)
This is the Checklist which is described in Using an Environmental Check for People with Autism Spectrum Conditions(Part 1).
The categories for this checklist are divided into 4 areas-
1.Sensory
Touch/tactile
Sight/visual
Smell/olfactory
Hearing/auditory
Taste/gustatory
Balance/vestibular
Body awareness/proprioception
2.Communication Systems
3.Escape
4.Other
Each area has a number of questions that will have a response yes or no
Decide to whether you believe the environment you are assessing fully addresses the issue raised.
Totalled up yes’ will give an overall friendly rating. It will be the analysis of each category however rather than the deficits of the environment which maybe of most benefit.
After each question there is a section named solutions. This is to be completed to indicate how you aim to change the current environment to address that particular question.
Solutions will always be specific to each area and individual therefore it is difficult to give generic solutions. Please refer to other sources
Sensory-Touch/tactile questions
1 Are there sensory materials available for individuals to touch
in the environment? e.g. sand, water play
Decide whether you have a variety of materials and enough needed for
each individual who seeks sensory stimulation
2 Are there opportunities for soft play/rough and tumble for individuals to access?
Consider how often and whether the opportunities are appropriate
3 Is there massage available to Individuals, if needed
Consider how often, by whom
4 Is there a body map on the wall where individuals can indicate
places they like/dislike to be touched?
Consider if no body map how you would determine where someone
likes/dislikes to be touched.
5 Are there small spaces where individuals can squeeze into, if they wish.
Consider if you could position furniture to facilitate this.
6 Are there indicators to point out where hot surfaces are?
Consider safety and how to manage this.
Solutions
Sight / Visual questions
1 Are the colours in the environment low arousal such as cream and pastel shades
and not red or vibrant.
Consider whether all rooms /spaces need
need a change of paint or wallpaper
2 Is the environment cluttered with furniture?
“ It has been suggested that people
with ASD find it helpful if furniture is
kept to the sides of a room and the
central space is kept clear”
(Nguyen, 2006)
3 Does the environment have many patterns, shapes and surfaces that may be sensitive to the eye.
Consider curtains, blinds and pictures etc.
Consider whether staff clothing or jewellery could be a problem.
4 Does the environment have fluorescent or harsh lighting, rather than dimmable or subtle lighting.
5 Have you considered sunlight from windows or skylights and where the light is at different times of the day?
Solutions
Smell / Olfactory questions
1 Have you considered the toxicity of paint or wallpaper paste used to decorate the environment
2 Have you considered the smells of cleaning materials used?
E.g. polish, air fresheners
3 Have you considered the smells of individuals (including pets) using
the environment? (e.g. deodorants, perfume and aftershave)
4 Do smells drift around the building from room to room and how might you isolate these?
Solutions
Hearing / Auditory questions
1 Have you considered the general noise level in the environment?
2 Have you considered hypersensitive hearing and looked at specific noises that may irritate such as clocks ticking, humming from lights, road noises or building/gardening work in the distance?
3 Is there noise from flooring and can this be deadened?
4 Have you considered noise levels at different times of the day?
5 Have you any specific quiet areas?
6 Have you considered the pitch of noise as well as the level?
Solutions
Taste / Gustatory questions
1 Do you have a wide range of foods available of
different textures and temperature?
2 Are there options to intensify the flavour of foods by adding seasoning or spices
3 Is there clear guidance on what to do when someone is mouthing or eating inedible food?
Solutions
Balance / Vestibular questions
1 Is the environment geared for people who seek movement?
(e.g. lots of space, soft play, swings, trampoline)
2 Are there opportunities to move indoors and out?
3 Is the environment geared for people who are oversensitive to movement?
e.g. support equipment when moving to help with balance.
4 Are routines flexible to those who struggle with movement disorders?
For example enough time given for movement in the day
Solutions
Body Awareness / Proprioception questions
1 Is the environment free of unnecessary obstructions?
2 Have rooms been made easier to navigate?
e.g. using colours to distinguish floors, walls and furniture, as well as
from room to room
3 To what extent have you considered those who have fine motor
difficulties? ( e.g. locks, cutlery, door handles)
Solutions
Communication questions
1 Does the environment have clear signs to indicate the use of
each room?
2 Are there directional signs to each area?
3 To what extent are communication systems supported by use of symbols, pictures, photos or objects?
4 Are rooms given one purpose only?
5 Are there photographs used to aid recognition of people
(Staff/unfamiliar) if needed?
Solutions
Escape questions
1 Is there a system to know when a person with autism needs to escape from an environment?
2 Is there a space/ room to escape to?
3 Is this room /space used solely for this purpose?
4 To what extent is this room / space low stimuli and safe?
5 Is there an alternative to the escape room / space
(e.g. the garden)
Solutions
Other questions
1 To what extent are you fully aware of each individuals sensory
difficulties?(see the sensory profile devised by Bogdashina, 2003)
2 Are you able to make changes to the sensory environment?
(e.g. are there practical or financial restraints.)
3 To what extent is the environment safe for people on the autism spectrum?
Solutions
Maximum score is 44 x yes
Your Score………………..
Date to review and repeat the checklist……………………..
References / further reading
Attwood.T (1998) – Asperger Syndrome: a guide for parents and professionals. London. Jessica Kingsley publishers.
Bogdashina. O- (2003) -Sensory Perceptual Issues in Autism: Different Sensory Experiences – Different Perceptual Worlds, London. Jessica Kingsley Publishers.
Clements, J. and Zarkowska, E. (2000) Behavioural concerns and autistic spectrum disorders: explanations and strategies for change. London Jessica Kingsley Publishers
Gillberg .C (2002) – A guide to Asperger syndrome. Cambridge. Cambridge University Press.
Godwin Emmons, P. and McKendry Anderson, L. (2005) Understanding sensory dysfunction: Learning, Development and Sensory Dysfunction in Autism Spectrum Disorders, ADHD, Learning Disabilities and Bipolar Disorder. London. Jessica Kingsley Publishers.
Howlin.P (1998) – Children with Autism and Asperger syndrome: A guide for practitioners and carers. Chichester. Wiley
Jordan .R (2001) –Autism with Severe Learning Difficulties: A guide for parents and professionals. London. David Fulton
Humphreys, S (2005) ‘Autism & architecture’
www.autismlondon.org.uk/pdf-files/bulletin _feb-mar_2005 accessed 16 March 2006
Morgan.H (1996) –Adults with Autism; A guide to theory and practice. Cambridge, Cambridge University Press
Morton-Cooper (2004)-Health Care and the Autism Spectrum –A Guide for Health Professionals, Parents and Carers, London, Jessica Kingsley Publishers.
National Autistic Society (2006 a)-Information sheet: What is autism? London. National Autistic Society.
National Autistic Society (2006 b) – Information sheet: What is Asperger syndrome? London. National Autistic Society.
Nguyen.A (2006), Creating an autism-friendly environment, London. The National Autistic Society.
Plimley.L (2004) Analysis of a student task to create an autism-friendly living environment. BILD.Good Autism Practice Journal 5.2 Pp35-41
Schopler.E (1995) –Parent Survival Manual; A guide to crisis resolution in Autism and related Developmental disorders. New York and London, Plenum Press
Whitaker.P (2001) –Challenging Behaviour and Autism-Making sense, making progress; A guide to preventing and managing challenging behaviour for parents and teachers. London. National Autistic Society.
Whitehurst .T (2006)-The impact of building design on children with autistic spectrum disorders. BILD Good Autism Practice Journal 7.1 pp31-9
Wing.L (1996)-The Autistic Spectrum; a guide for parents and professionals. London. Constable and Robinson.
Categories: Jessica Simpson Photos Tags: Autism, Checklist, Conditions, Environmental, Part, Spectrum
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
Categories: Jessica Simpson Videos Tags: Autism, Nursing, people, Spectrum
