2009: loping specialist skills in autism practice · December 2010 (DH 2010c). The Autism Act 2009...
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RCN PUBLISHING ESSENTIAL GUIDE The Autism Act 2009: developing specialist skills in autism practice This guide has been supported by
Transcript of 2009: loping specialist skills in autism practice · December 2010 (DH 2010c). The Autism Act 2009...
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The Autism Act 2009:developing specialist skillsin autism practice
This guide has beensupported by
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This guide has been written by Jill Aylott, Centre for Professional and Organisation Development, Faculty of Wellbeing, Sheffield Hallam University
3 Introduction
5 A note about terminology
5 Defining autism to guide best practiceEnvironments and sensory issuesAutism as a sensory perceptual impairmentBarriers in the environmentUse of reasonable adjustments to enable access to the environmentCommunication, information and processingUnderstanding behaviourUse of reasonable adjustments to change personal behaviourAttitudinal barriers
16 Diagnosis and servicesTransition
18 References19 Summary
Contents
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ESSENTIAL GUIDE
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IntroductionPeople with autism are ‘falling through gaps in services’ (Loynes 2001, Department of Health (DH)2006, National Autistic Society 2010). The All Party Parliamentary Group for Autism (APPGA) was formed in 2000 to work with the main political parties to raise awareness of the difficulties that people with autism and their families face, and to campaign and lobby for legislation change. The National Autistic Society drafted the Autism Act, which was taken forward by Cheryl Gillan as a private member’s bill in November 2009. The bill was supported by a coalition of 16 autismorganisations and had all-party support. The bill was passed and required the publication of an autism strategy paper Fulfilling and RewardingLives in March 2010 (DH 2010a); this was followed by the publication of a three-year delivery plan inApril 2010 (DH 2010b) and statutory guidance to implement Fulfilling and Rewarding Lives inDecember 2010 (DH 2010c). The Autism Act 2009 seeks to give health and social care organisationsspecific legislative responsibility to: 4Provide all staff with statutory training in autism, with front line staff required to have more
specialist training in meeting the specific needs of adults with an autism spectrum disorder. 4Ensure that the diagnosis of autism is accompanied by an assessment of need. Before the act,
few more able people with autism were accessing community care assessments, and of thosewho did only 45 per cent were receiving services specified in the assessment (Loynes 2001).
4Provide all children with a statement of an autism spectrum disorder with a drawn-up 'transitionplan' for progression into adult services. Before the act, an inquiry into ‘transition’ found that:‘Transition services are still failing most young people on the autism spectrum’, and that: ‘Gettingit wrong for a young person on the autism spectrum can have catastrophic consequences thatmay be irredeemable because of their inherent difficulty with new situations’ (Allard 2009).
4Ensure that adults with autism are involved in local service planning. Local authorities are notaware of the number of people with an autism spectrum disorder living in their locality, whichthey need to be to identify and adequately plan ways to work with people with autism.
The Equality Act 2010 replaced most of the Disability Discrimination Act 1995. The Equality Actrequires ‘reasonable adjustments’ to the way things are done in public services – for example,changing a policy, changing the structure of the building or providing information in an accessibleformat. It is not appropriate to wait until a person with a disability seeks to use a service – the actrequires public sector organisations be proactive in identifying the needs of disabled people. Thisguide will explore how services might anticipate the needs of people with autism. Its aims are to:4Explore an understanding of autism in adulthood (or transition to adulthood) that helps
practitioners to provide a positive experience for people with autism seeking to access services inhealth and social care.
4Review how this knowledge might help to identify and plan to meet the needs of adults withautism, while making ‘reasonable adjustments’ to the services to enable this to occur.
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4Provide a clear pathway for thedevelopment of leaders in the field ofautism in health and social care who will‘champion’ the implementation of theAutism Act 2009.
This guide is aimed at people in a specialist rolewho will lead the planning, development andcommissioning of services with local authoritiesand GP consortia. A report from the NationalAudit Office (2009) stated that ‘80 per cent ofGPs feel they need additional guidance andtraining to manage patients with autism moreeffectively’. Although the employment, policeand probation services are not legally requiredto respond to the Autism Act 2009, the AutismStrategy (DH 2010a) and Statutory Guidance(DH 2010c) could help improve the services inthese areas. The vision of the act is that:
‘All adults with autism are able to live fulfillingand rewarding lives within a society that acceptsand understands them. They can get a diagnosisand access support if they need it and they candepend on mainstream public services to treatthem fairly as individuals, helping them make themost of their talents.’
The Autism Strategy (DH 2010a) outlines theneed for staff to have training in autism. But,unless training helps staff to develop their skillsin making reasonable adjustments under theEquality Act 2010, little will change in the livesof people with autism and their families. Simplyproviding training using a medical model isinsufficient, because this will only provideinformation about the condition of autism inisolation from the environment that defines thecharacteristic behaviours that are part of theautism spectrum condition. Some environments
can be enabling, while others can be disabling(Swain et al 1993). A social model ofunderstanding autism is needed to understandhow barriers in health and social care can havea disabling and distressing effect on the personwith autism if service providers lack knowledgeof autism and fail to make some level ofreasonable adjustment.
People with autism are sometimes referred toas having an ‘invisible’ impairment, andidentifying how reasonable adjustments can bemade to make services more accessible may notbe easy. But, reasonable adjustments need to bemade to:4Premises – by exploring how the
environment can be better accessed bypeople with autism.
4Processes – by exploring how appointmentscan be scheduled better.
4Communication – by exploring howdocuments can be presented in a way thatcan be better processed by people withautism.
This guide also discusses the development of skillsand knowledge in autism practice to explore:4Autism as an impairment of sensory
perception.4The use of an environmental audit to ensure
organisation-friendly access for people with autism.
4The use of a communication profile todevelop a personalised pathway throughhealth and social care and to makereasonable adjustments as part of theperson’s care plan.
4A systematic approach to understanding the meaning of behaviour.
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A note about terminologyMany websites and autobiographical accountswritten by people with autism are available.Some of these suggest that people with autismare dissatisfied with the term ‘autistic spectrumdisorder’ (Gerland 2000, Jackson 2002, Lawson2000). A movement away from the medicalmodel of defining autism as a disorder towardsan understanding that it is a conditioncharacterised by certain behaviours (someidiosyncratic) that may be seen and evidenced insome environments but not in others hasemerged. This suggests that people with anautism spectrum condition are disabled byfactors external to themselves, recognisingautism as an impairment, which will havepositive and negative aspects depending on thestimuli present in particular environments. Theofficial diagnostic criteria (Diagnostic StatisticalManual [DSM-IV], International Classification ofDiseases [ICD-10]) refer to autistic spectrumdisorders, whereas people with autism and theirfamilies may prefer the term autism spectrumcondition. This guide will use the term autismand autism spectrum condition throughout.
Defining autism to guide best practiceTo understand autism spectrum conditionsthrough the social model, we need to understandautism differently from the more clinicaldefinition used in DSM-IV (American PsychiatricAssociation 1994). Practitioners need adefinition of autism to help them to identify theproblems faced by people with the condition,and for this knowledge to be used to improvethe experience for service users and to challengebarriers that prevent access to services by
people with autism and their families. Thissection of the guide will explain the likelybarriers raised by:4Environments and sensory issues.4Communication and information, and
cognitive processing issues.4Attitudes from health and social care
workers.It will identify possible 'reasonable adjustments'that could give people on the autism spectrumgreater access to health and social care services.Environments and sensory issues Autism cancause people to experience high levels of stressand distress, particularly when they are in highlystimulating and demanding environments(Williams 1998a, 1998b, 1998c). This is the areain which 'reasonable adjustments' might mostimprove access to services for people on theautism spectrum. People with autism showexcessive physiological reactivity toenvironmental stressors compared with theirnon-autistic peers. Despite growing awareness ofstress in autism, little work has been done todevelop tools that assess reactions to stressorsin this population (Goodwin et al 2007). The onlyinstrument to assess stress in people withautism is the Stress Survey Schedule (Groden etal 2001), an informant-rated, 49-questioninstrument. Goodwin et al (2007) tested theinstrument’s validity with a sample of 180people on the autism spectrum. They identifiedstress in eight specific areas, as shown in Table 1.
Gillott and Standen (2007) used the StressSurvey Schedule and found that fear of change,anticipation and certain sensory stimuli werethe main precipitators of stress for people onthe autism spectrum. Fear of change was
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Eight areas of stress identified by the Stress Survey Schedule
Area of stress Example situations
1. Changes and threats Having a cold; change in task and new directions; going shopping; change in environment; transition in locations; transition from preferred to not preferred activity; engaging in an activity not liked;being unable to communicate; needing to ask for help; participation in group activity.
2. Anticipation and uncertainty Having a change in plans; waiting for an activity; having unstructured time; waiting generally.
3. Unpleasant events Waiting to talk about a desired topic; having personal objects missing; following a diet; receiving criticism and being told 'no'; having something marked as incorrect; a change in teacher; losing at a game.
4. Pleasant events Receiving a present; playing with others; receiving reinforcement; having something marked correct; receiving tangible reinforcement; having a conversation; receiving verbal reinforcement.
5. Sensory/personal contact Being in the vicinity of noise or disruption by others; being touched; receiving hugs and affection; feeling crowded.
6. Food-related activity Waiting at a restaurant; waiting for food.
7. Social/environmental interactions Being in the vicinity of bright lights; being unable to assert oneself with others; someone else making a mistake.
8. Ritual-related stress Having personal objects or materials out of order; being prevented from completing or carrying out a ritual; being interrupted while engaging in a ritual.
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TABLE 1
prominent and could apply to people orlocations. Williams (1998a), in Nobody Nowherewrites: ‘The constant change of most thingsnever seemed to give me a chance to preparemyself for them. Because of this I foundpleasure and comfort in doing the same thingsover and over again.’
The study by Gillott and Standen (2007) alsoidentified elevated levels of anxiety in adults withautism compared with adults with intellectualimpairments. The types of anxiety with highscores were panic/agoraphobia, separationanxiety, obsessive-compulsive disorder andgeneralised anxiety disorder.
(Groden et al 2001, Goodwin et al 2007)
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This stress experienced by people with autismhas been referred to as 'exposure anxiety', whichdescribes the way people with autism protectthemselves from stimuli in the environment(Williams 2002). Exposure anxiety explains whya person with autism may be able tocommunicate verbally and through othereffective means in an environment that is quietand without high levels of distracting stimuli.However, in a busy environment with high noiselevels and bright lights the person may ‘shutdown’ and be unable to speak, sitting in a cornerand rocking. Others might simply seek to runaway. Many of the services provided to peopleacross health and social care are in environmentsthat are often busy, noisy, stimulating anddemanding.Autism as a sensory perceptual impairmentApproximately 70 per cent of people with autismwill have a ‘sensory perceptual impairment’(Cascio et al 2008). Leekam et al (2007) foundthat 90 per cent of children with autism hadsensory abnormalities, while 94.4 per cent ofCrane et al’s (2009) sample reported extremelevels of sensory processing on at least one partof the sensory assessment. Bemporad (1979),writing of Jerry, a young man with autism, statesthat: ‘The recurrent theme that ran through allJerry's recollections was that of living in afrightening world presenting stimuli that couldnot be mastered. Noises were unbearably loud,smells overpowering, nothing seemed constant,everything was unpredictable and strange.’
Sensory abnormalities will exist across all fivesensory modalities, as well as kinaesthetic andproprioceptive sensation (Harrison and Hare2004). Table 2 (page 8) summarises the
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particular sensory difficulties. A sensoryperceptual impairment is different from asensory impairment, which suggests a loss ofsight or hearing, and has been defined as beingmore complex as it encompasses all the senses(Shabha 2006). A sensory perceptualimpairment is characterised by ‘turbulent,fluctuating, inconsistent and unreliableperception where individuals cannot makeconnections with their own environment’(Shabha 2006).
A sensory perceptual impairment can affectthe person in different ways:4The person may struggle to remember
information in a different environment.Grandin (1984) explains how she processesinformation visually and how this affects herremembering certain basic information:‘Learning sequential things such as mathswas very hard. My mind is completely visualand spatial work such as drawing is easy. I taught myself drafting in six months. Ihave designed big steel and concrete cattlefacilities but remembering a phone numberor adding up numbers in my head is stilldifficult.’
4Perception may be delayed in a new anddifferent environment, which means thatpeople may need to pause outside or inside a door for a few seconds while they adjusttheir perception.
4For some people, the sensory inputs getmixed up and the person goes into ‘sensoryoverload’. At this point they will not be able to process verbal instruction and willneed support to come out of this state of sensory overload.
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Sensory difficulties in people with autism
Examples
‘Noises that would make me cover my ears or avoid themwere: shouting, noisy crowded places, polystyrene beingtouched, balloons being touched, noisy cars, trains,motorbikes, the sound of felt tip or marker pens whencolouring in’ (Joliffe et al 1992).
‘At home I would spend hours in front of the mirror,staring into my own eyes and whispering my name overand over, sometimes trying to call myself back, at othertimes becoming frightened at losing my ability to feelmyself’ (Williams 1998a).
‘Usually I claw large chunks of skin and flesh from myupper arms or sometimes my thighs and shins. The painis so intense that I am totally incapable of focusing onanything else around me... It puts me in total control.Rather than “out there” penetrating and “hurting me” it isnow me hurting me’ (Blackburn 2000).
‘Many conversations going on at once will become aconfusing blur. As the person with autism can’t processthem to decipher their meaning’ (O'Neill 1998).
‘These people had, uninvited, tried to take away my choiceat being touched, though to them it was more a tap onthe shoulder. These were the people who out of their ownselfishness, would rob me of my sense of peace andsecurity’ (Williams 1998a).
‘Sometimes there are also perception difficulties becauseautistic people are concerned with the space immediatelysurrounding their bodies, they tend to prefer proximalsenses: touch, taste, smell to their distal senses sight andhearing’ (O'Neill 1998).
Williams (1998a) describes herself as having a ‘mono-channel’, not being able to see and hear at the same time,while Blackburn (2000) talks about how touch (used as aprompt) can severely distract from the verbal request, asthe energy required to process touch is moreoverwhelming than that to process auditory instruction.
TABLE 2
Sensory abnormality
1. Hyper- and hyposensitivity to stimulation and fluctuation between the two
2. Distortion – for example, depth may be wrongly perceived or still objects may be seen as moving
3. Sensory tune-outs – for example, sound or vision may suddenly black out and return
4. Sensory overload
5. Difficulties in processing from more than one channel at a time
6. Multi- and cross-channel perception. For example,the perception of sound may be accompanied byperception of colour or taste
7. Difficulties in identifying the source channel of the sensory stimulation
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(Adapted from Harrison and Hare 2004)
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Various tools are available to assess sensorydysfunction, including the Sensory Profile (Kernet al 2007, Dunn 1999) and the DiagnosticInterview for Social and CommunicationDisorders (DISCO) (Leekam et al 2007). Bothinstruments are complex and will usually be usedby a trained psychologist or psychiatrist. A moreaccessible instrument for practitioners is theSensory Behaviour Scale (Table 3, page 10)(Harrison and Hare 2004), which can help withscreening and individual assessment. The authorsargue that its use should ‘facilitate thedevelopment of more appropriate environmentsfor people with autism’.
Using the Sensory Behaviour Scale acrossteams and with carers can help to identifyrequirements for adaptation in the environmentor for support, as well as to explore relevant andenjoyable leisure activities. Box 1 gives anexample. Some people with kinaesthetic needsmay enjoy trampolining or visiting a snoezelenroom. Harrison and Hare (2004) argue that theinstrument be used to create more appropriateenvironments for people with an autismspectrum condition. It would be expected that a'sensory curriculum' could be created to ensurethat the service commissioned on behalf of theindividual is suitable and appropriate.Barriers in the environment For example,lighting, sound (acoustics) and patterned flooringand walls or stripes on the radiators – will affectsome people with autism in different ways.People are unlikely to be able to communicatethe effect the environment has on them andinstead may display stereotypical and self-stimulatory behaviours. Such behaviours maysuggest that the person is being overwhelmed
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Example of use of the SensoryBehaviour Scale
Rory is 29 years old. He has an autism spectrumcondition and lives at home with his parents and sister. His family depends on respite careservices for Rory as his mum is his full-timecarer.
The family uses respite care services from theadult learning disability service, but oftentensions exist between Rory’s needs and thevalues of the learning disability service. On theSensory Behaviour Scale, Rory scored high onthe following:
4Auditory – ongoing.
4Olfactory – ongoing.
4Kinaesthetic – ongoing.
4Proprioception – ongoing.
4Vestibular – ongoing.
A planning meeting for Rory identified that heflaps his wrists and jumps up and down(kinaesthetic) and that he does this whilewatching his favourite DVDs. The respite careservice has only one television, so the serviceagrees for Rory to have access to a TV in hisbedroom; he will need to learn to use theremote control.
Some of the DVDs have music and are based onrepetitive routines. Some staff have questionedif the videos are ‘age appropriate for Rory’, andmore work is needed to help the staff team tounderstand the core elements of the SensoryBehaviour Scale.
All activities for Rory at the respite care serviceneed to relate to the Sensory Behaviour Scale.
‘Reasonable adjustments’ in the service requireconsideration of the vestibular needs of Roryand his unsteadiness of gait.
Appropriate planning is needed for him to avoidcrowded areas.
BOX 1
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Outline of the Sensory Behaviour Scale
Does the person: Ongoing In past No or N/A Don’t know
1. Visual
a. Watch bright lights?
b. Twirl his or her fingers in front of his or her eyes?
2. Auditory
a. Make unusual vocalisations?
3. Olfactory
a. Smell other people?
b. Smell parts of his or her own body?
4. Taste
a. Put objects in his or her mouth?
b. Engage in play with saliva or other bodily substances?
c. Like any unusual foods/tastes (please give details)?
5. Tactile
a. Hold and manipulate small objects?
b. Like to be tightly wrapped up in clothes and/or bedding?
6. Kinaesthetic
a. Flap his or her wrists?
b. Jump up and down on the spot?
c. Twirl round and round?
7. Proprioception
a. Have difficulty in dressing and feeding him/herself?
8. Vestibular
a. Walk with a noticeable gait?
9. Temperature
a. Seem to be unaware/tolerant of temperature extremes
10. Sensory preferences
a. Tend to use touch/taste/smell to examine objects and situations more than using vision and hearing?
TABLE 3
(Adapted from Harrison and Hare 2004)
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sensorially, and this will make it difficult for theperson to process and retain instructions orinformation. Consider Hale's (1998) thoughts onlighting: ‘To add to my problems, the sun comesstreaming through the window, the brightness isblinding and very long spikes of sunlight comeout towards me from places where the sun hitsshiny surfaces. Everywhere I go there is thedreaded fluorescent tube lighting. Both sunlightand fluorescent tube lighting increase the rate atwhich my eyes become tired and augment all myvisual distortions (for example, there are manymore little white bits flying around). Spendingmore than about half an hour under fluorescentlighting gives me a headache and eye ache. Myideal after dark lighting is from “daylight” bulbs(these are light bulbs often used for interiorphotography or needlework after dark) andduring the daylight hours I like natural lightwhich comes through a north facing window.’
The source of light (natural daylight is better inappointment rooms or college or universityclasses) and the intensity of light should beexamined. High levels of light intensity andflickering lights are triggers for self-stimulatingbehaviours (Shabha 2006). Fluorescent lightingcauses severe problems for people with autism,as they see a ‘60-cycle flicker’ and reflectionsbounce off everything. Under the Equality Act2010, a ‘reasonable adjustment’ would be topurchase appropriate light bulbs for a personwho is using a day service or attending a collegeclass or university course.
It is not always easy for adults with autism torecognise the difficulties they encounter inenvironments and then explain these difficultiesto staff. Staff members need to be proactive to
identify factors that cause people distress and tosuggest a course of action under the Equality Act2010. Some adults with an autism spectrumcondition might develop management strategieswhen in these environments because they mayhave been supported in the past to reflect onways to deal with such situations with familymembers and support staff. Others may needhelp to manage these situations, and staff willneed to recognise when the person is being‘saturated by stimuli’ so that they can enable theperson to withdraw and adjust to a moremoderate environment.
Some people may not be able to cope withadditional stimuli in these already difficultenvironments. For example, Hale (1998) reflectson living in a university halls of residence: ‘Thecarpet and duvet cover in my study room arehighly patterned. This causes me to see awhirling mesmerizing mess which hurts my eyes.The patterns are hard to escape in this smallroom. Any highly contrasting pattern is aproblem. For instance trying to have aconversation with someone who is wearing ablack and white striped shirt is almostimpossible. The pattern appears to be jumpingaround in a mesmerising fashion and can causemy vision to go fuzzy and remain fuzzy long afterthe pattern is out of sight.’
It would be a ‘reasonable adjustment’ torequest that staff wear clothing without patternswhile supporting Alison at university. Use of reasonable adjustments to enableaccess to the environment First, the physicalenvironment should be reviewed as part of theimpact assessment in relation to the Equality Act(2010) (Box 2). Second, people with autism can
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be desensitised to the environment (and gradualexposure to new people) before the day theyattend the hospital appointment, the new collegeclass or the induction day at the university. Theprocess of desensitisation will vary from personto person, but ideas for doing this include:4Introducing photographs in a schedule to
prepare the person for what is going tohappen at the hospital or social servicesappointment.
4Taking the person on a trial visit to meet the
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Environmental audit for access
1. Lighting4Some flickering lights can cause difficulties if
present in a consulting room.4Is there natural night in the consulting room?
Natural light may have a more relaxing effect.4Is there fluorescent tube lighting?
2. FlooringFor example, large black and white floor tiles maycause difficulties with orientation and movement forsome people.
3. AcousticsThis can cause the person to have sensory overloadand be unable to process standard information.
4. SpatialThe room needs to be large enough for people todefine the spatial distance between themselves andthe hospital staff member. A small confined spacecan cause excessive stress. People need to havesome control over their environment.
5. TransitionThe person should be supported to take an item ofinterest that will help to calm him or her when in astrange environment.
BOX 2
staff and see the environment (without anyintervention occurring).
4On the day of the planned intervention,introducing the person to photographs ofthe people who will be carrying out theprocedure.
4Using a virtual visit to the hospital withsoftware that orientates the person to theenvironment (and replicates acoustics).
Communication, information and processingSome ‘reasonable adjustments’ can be made tothe communication methods used by staff. Inunfamiliar environments, a lot of verbalinformation will not be processed by the personand will sound like ‘blah blah blah’. Visualinformation is a good way to enable easieraccess to people with autism.
Visual information, including photographs,videos and diagrams, is easier than written orverbal information for people with autism toprocess. Visual input is the primary source ofinformation for people with autism (Quill 1995).Cihak (2011) found no single preferred means ofvisual communication that was more effective(between static picture scales and video-basedschedules). This suggests that visual schedulesneed to be tailored to individuals, or generalisedto enable better access rather than relying onverbal or written instruction. This is importantfor people with autism attending appointments,where they will need some sort of visualscheduling of the stages in the process. Howmany stages to make available to the person atonce will depend on the person’s cognitive ability.Letters might be better set out in a landscapeformat, so that the events of an appointmentcan be scheduled from left to right. Department
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of Health guidance has been issued on bestpractice in producing 'easy read', this can beaccessed at www.valuingpeoplenow.dh.gov.uk/webfm_send/377.
More effort should be made to listen to theperson’s behaviour, exploring if a communicationprofile is in place that recommends how best tocommunicate with the person. Not touching theperson unless the person is asked is important,as: ‘When touched unexpectedly, we usuallywithdraw, because our nervous system does nothave time to process the sensation’ (Grandin1996). Encouraging a rapport by talking aboutthe person’s area of special interest can act as a‘de-stressor’ for some people in someenvironments. This information might beprovided in the communication profile (Table 4).It is important to:4Avoid excessive verbal communication
(which is without instruction).4Avoid the use of sarcasm and unnecessary
body language.4Focus on listening to the non-verbal
communication of the person.Sensory perceptual difficulties mean that somepeople with autism will fail to orientate themselveswhen their name is called (Cascio et al 2008).People should always be referred to by the namethey recognise. When a request is made, theperson should be allowed a few seconds toorientate him/herself without the instructionimmediately being repeated or the language that isused in the instruction being changed. Understanding behaviour Not all behaviourpresented by a person with autism will havea sensory origin. Behaviour often serves as a wayof communicating when a person may not have
the necessary language. With a growingawareness of the role of sensory perceptualdifficulty in autism, differentiating between fourpossible functions for behaviour will beimportant. These are:4Avoiding contact (escape).4Seeking contact (attention).4Serving the purpose of communication
(tangible).4Sensory.
The 16-question Motivation Assessment Scale(Durand 1990) (Table 5, page 20) is anexcellent place to start a functional analysis ofthe person’s behaviour. Sometimes thisinstrument can be completed with teams ofstaff to obtain some sort of consensus aboutthe function that a particular behaviour mayhave for the person. A lack of understanding ofthe function of a behaviour may lead to dissentin the team. For example, believing a person isattention-seeking when the function of thebehaviour is to avoid contact. Consider thefollowing situation with Mary:
Mary lives in a supported living environmentwith two other people with autism. Staffmembers are worried about Mary's behaviourand that her behaviour seems to be gettingworse. They explain that every time a member ofstaff approaches Mary, she starts to spit at them.Mary has learnt that when she spits at staff theyleave her alone. Staff members believe that thereason Mary spits is to gain attention and havedecided to ignore Mary when she spits at themand to praise the positive times that they engagewith her when she is not spitting. Over the pasttwo weeks, Mary's behaviour has worsenedbecause as soon as she spits the staff retreat and
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An example of a communication profile
ExampleJohn Brown makes his needs known by vocalising various sounds. Thesounds used vary in loudness and pitch depending on his mood. John usessounds that can communicate happiness and sadness. If staff do notattend to the noises, the sad ones will escalate and result in some form ofnegative behaviour. His most commonly used sad sound is ‘na-na, na-na’. If the na-na sound continues and he starts to grind his teeth and to rockback and forth, he is becoming even more unhappy about something.
John claps his hands to let staff know that he wants something. If staff donot understand, he may take them by the hand to show them what he istrying to communicate. If staff have still not listened, he will becomeagitated and start to sit on his hands and rock backwards and forwards.He may then start to make a na-na sound if he continues to be unhappy.After grinding his teeth, he may become frustrated and try to attack amember of staff.
As John becomes more anxious, his Makaton signing becomes morevague and difficult to interpret and understand. The sounds he makesbecome louder and higher pitched.
John loves garden tools; he likes the variation in form rather than usingthem. He likes to visit garden centres and look through catalogues.
John will point to the vehicle’s keys and sign for you to give him somemoney; he will stand by the window and sign for driving a car. He will alsodo drawings of past trips to garden centres. All the above suggests thathe would like you to drive to the garden centre to buy new tools.
No.
Grinding teeth; grunting sounds becoming louder and louder; repetitiveMakaton signing for garden tools; rolling eyes; sucking in cheeks and bitingthe side of his mouth; pulling at his ears and teeth; flapping his hands inthe staff’s faces; swinging his arms and body from side to side; shallowbreathing; pallor and clammy skin.
John’s day needs to be structured. If the planned activity does not occur,an alternative needs to be done instead because he does not understandcancellation. Staff working with John need to support him in a confidentmanner and include him in all aspects of the daily routine.
TABLE 4
Question1. Does the person use verbalcommunication? If so, how is thisused in communication with othersand how effective is it as a meansof communication?
2. What non-verbal methods ofcommunication are used?
3. Does communication change whenanxiety levels increase? If yes, howdoes this change?
4. What is the person’s specialinterest?
5. What is the meaning of the person’snon-verbal communication? (Whenthey do X, they mean Y)
6. Does the person have his or herown words for things?
7. How does the person expressanxiety?
8. What needs to be in place in theenvironment to help the person not tofeel anxious?
(This is based on a real person who had a minimum of two male staff members on each shift to work with himin his flat. Staff often expressed difficulties they experienced in understanding his communication.)
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ignore her. Staff have had no opportunities toengage with Mary when she is not spitting, soMary has had no positive feedback. The autismspecialist explains to the team that theirmanagement strategy might be wrong and thatall should complete a Motivational AssessmentScale to find out the function of Mary's behaviour.
Only after the team members have agreed onthe possible function can an appropriatebehavioural management strategy be devised.Sometimes the presentation of behaviour willhave no pattern and no single reason for it.This should alert staff to the possibility thatthe behaviour is caused by pain. Carr and Owen-DeSchryver (2007) found that thefrequency and intensity of problematicbehaviour were higher when the person wassick. It is not easy to know how to ask the right questions of a person without verbalcommunication who presents with severe self-injurious behaviour. For example, a young man,David, banged his head so much that hefractured his jaw. X-rays showed that he had aserious abscess on his tooth, which had beenundetected for some time. It was onlydiscovered when he was X-rayed as a result ofthe injury caused by his self-injurious behaviour.Carr and Owen-DeSchryver (2007) developedassessment tools that can be used to identifyany underlying ill health if no pattern isdiscernable through presenting behaviour.Use of reasonable adjustments to changepersonal behaviour Staff will sometimes need toadapt their behaviour, when communicating withthe person with autism. This can be done byreading the communication profile andcommunicating to other professionals via the
patient’s notes. Every effort should be made toexplore the function of behaviour. People withautism may not have the words to explain pain,even if they have spoken language. The young manwith the broken jaw was described as ‘revolting,difficult and very challenging’, because he wouldplay with his spit, and as a result staff memberswere not motivated to provide support to him.
Training on autism from a sensory perspective isvital to help staff understand that some peoplerelate to their proximal senses more than theirdistal senses because this is a way to cope with aconfusing world. Kern et al (2007) explain thateven though sensory dysfunction is mentioned inDSM-IV (American Psychiatric Association 1994),which is the diagnostic manual for diagnosingautism, it remains excluded from the indicativeprofile. This is problematic because not all trainingin autism will focus on the sensory domain ofautism as a key defining area of the condition.However, understanding the sensory impairmentwould help caregivers to overcome their prejudicesin caring for people who relate to the senses closeto their body. It would also help to ask the rightquestions when an understanding about complexand challenging behaviour is needed.
Guidance is needed on desensitising the personwith autism to the member of staff. This maytake time. The person may need to process themember of staff before he or she speaks;otherwise, this may lead to overload andineffective social relating.Attitudinal barriers People with autism reportnegative experiences of other people's attitudestowards them. Williams (1998a) writes: ‘I told him how I’d been called crazy, stupid,disturbed and just plain weird.’ Reading the
october :: 2011 15
Autism 2011_Layout 1 08/09/2011 17:40 Page 15
autobiographical accounts gives a sense that thepressure is on people with autism to become‘normal’. Williams (1998a) writes: ‘These “helpful”people were trying to help me to “overcome myignorance” yet they never tried to understand theway I saw the world.’
While many people with autism haveexceptional talents, a general societal prejudiceabout autism spectrum conditions suggests thatpeople ascribe a negative social role to autism as‘difference’ rather than a positive one. Thepositive aspects of autism should be exploredand the abilities promoted rather than thedisabilities. Encouragingly, the first-year deliveryplan Towards Fulfilling and Rewarding Lives (DH2010b) outlines a long-term vision for adultswith autism to develop an increasing awarenessand understanding of autism in the widercommunity. This document contains plans to‘develop a nationwide campaign to tackle stigmaso often attached to autism’ (DH 2010b).
Diagnosis and servicesThe Autism Strategy (2010a) recognises thestigma present in the wider society for peoplewith autism and their families, and the AutismAct seeks to remove that. How the diagnosis isgiven to people with autism and their familiescan be unsatisfactory. Beresford et al (2007), intheir study of 25 families (with a total of 28children with an autism spectrum condition agedbetween three and 19 years), found that parentshad experienced negative communication abouttheir child’s diagnosis of autism. NationalInstitute for Health and Clinical Excellence(NICE) guidance on the diagnosis of autism willbe published in 2012.
Under the NHS Community Care Act 1990, allpeople with a learning disability are entitled to acommunity care assessment, although this doesnot guarantee that a service will be provided.However, once a diagnosis has been madepeople with autism have not previously beenautomatically entitled to this assessment, aslocal authorities argued that some people withautism did not have a learning disability. In aNational Autistic Society (2010) survey of 1,400adults with autism and carers, 63 per centstated that they did not receive support to meettheir needs. The Autism Act 2009 now makes itclear that this assessment cannot be denied onthe basis of IQ. People who have a socialimpairment clearly need support, and this will bethe responsibility of the lead professional forautism in local areas.
A diagnosis of autism will give people who goto university the right to learning support. Thenumber of university students with autismincreased more than fourfold between 2003 and2008 (National Audit Office 2009), andappropriate support will need to be developed.
A diagnosis of autism is a catalyst for acarers’ assessment under the CarersRecognition and Services Act 1995. Carers andfamilies live in an environment with high levelsof stress, and they should be made aware oftheir right to request an assessment. Socialservices should draw up a plan for the carerand communicate it to their GP.Transition Children with autism need a transition plan between the ages of 13 and 19years. A health action plan can also aim todevelop social skills and strategies to enableself-care and independent living. Multi-agency
16 october :: 2011
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planning is required to meet the needs of children going through the transition to adult services. The white paper Equity andExcellence advocates ‘no decision about mewithout me’, which emphasises the engagement of all children in the process oftransition planning (DH 2010d).
Transitions must be considered from a micro-scale (everyday perspective) to larger-scaleplanning. Transitions for people with autism canbe complex and require key observations. Theobservation with James (names changed) in Box 3 illustrates how a 14 year old with complex communication difficulties tries toexpress his need to have an item of his owninterest in the transition from home to a summerschool. The observation shows how hiscommunication was picked up by the teachingassistant but not the teacher.
The example in Box 3 illustrates how untilJames’s stress and anxiety were dealt with, hewas not going to concentrate on other tasksrequired of him. His stress acted as a sufficientdistracting mechanism, and he was not able toprocess any other information. In this example,James’s stress was generated from‘anticipation’ and from the prospect of a‘change’ in environment, and this was notacknowledged by the teacher. The classroomassistant was able to reassure James so that hecould get on with his work.
Effective means need to be in place tocommunicate with children, and the use of visualcues in scheduling, is an important component ofhelping the person to understand what is goingon. A study by Cihak (2011) found that childrenwith autism began transition between activities
october :: 2011 17
Example of transition
9.30am: James says: ‘I will take four videos.’ Theteacher says: ‘No, I have said no videos to be takento Bewley Camp.’ James says: ‘Just one video,please, just one video, okay Mr Adams?’
Mr Adams gets on with taking the class: ‘Yes, nowJack, you will be a prison officer, Simon a pigfarmer, and Sam Clarke is going to be aphotographer’. James says: ‘Mr Adams is being silly’.James is still unconvinced that the teacher will lethim take a video with him to Bewley Camp. Almostten minutes later James initiates communicationwith Mr Adams.
9.39am: James calls ‘Mr Adams’, the teacher looksover to James, and James lifts his shirt showing hisabdomen. The teacher says ‘Put it away’, and Jamessays: ‘Just one video for Bewley Camp, just onemore, just one more, just one video, just one video.’
9.43am: Lesley, the support assistant, comes in andhears James. She says: ‘Yes you can keep it in yourbag,’ and she prompts him to get on with his work.
BOX 3
in the classroom more independently after beingexposed to visual schedules. The use ofscheduling should be a standard process ofenabling communication for micro activities ina day service, an employment placement orrespite care; it should also be used to explainlarger scale events such as a transition todifferent services.
Leaving communication to the last possibleopportunity to avoid the person becominganxious is not good practice. Best practiceshould be engaging people in the transition in a way that helps them to understand theplanned process of change. This varies fromperson to person, but even people with severe
Autism 2011_Layout 1 08/09/2011 17:40 Page 17
18 october 2011 NURSING STANDARD
learning difficulties and autism should beengaged in the transition process through theuse of ideas such as:4A visual long, thin map, such as a wallpaper
border, with events that the personrecognises, such as birthdays and Christmas,which is used to count down to an eventsuch as changing services or respite carelocations.
4A large wall calendar with marked monthlyor weekly events (depending on the person’s
ability to understand), which could be in theform of photographs. People could be helpedto understand what they will be doing thatday. The photographs could be removed atthe end of the day and new photographs putin the next morning.
4Others may be at the point of understanding‘now’ and ‘later’. The use of Makaton signs ofnow and the picture of an activity can bepresented, then a Makaton sign of later withan alternative picture presented.
ReferencesAllard A (2009) Transition to
Adulthood: Inquiry into Transitionto Adulthood for Young peoplewith Autism. National AutisticSociety. www.appga.org.uk/Resources/Past-Reports.aspx (Lastaccessed: August 1 2011.)
American Psychiatric Association(1994) Diagnostic and StatisticalManual of Mental Disorders. Fourthedition. American PsychiatricPublishing, Arlington VA.
Bemporad JB (1979) Adult recollectionsof a formerly autistic child. Journal ofAutism and DevelopmentalDisorders. 9, 2, 179-197.
Beresford B, Tozer R, Rabiee P, Sloper P(2007) Desired outcomes for childrenand adolescents with an autismspectrum disorder. Children andSociety. 21, 1, 4-16.
Blackburn R (2000) Within andwithout autism. Good AutismPractice. 1, 1, 2-8
Carr EG, Owen-DeSchryver JS (2007)Physical illness, pain, and problembehavior in minimally verbal peoplewith developmental disabilities. Journalof Autism and DevelopmentalDisorders. 37, 3, 413-424.
Cascio C, McGlone F, Folger S et al(2008) Tactile perception in adults
with autism: a multidimensionalpsychophysical study. Journal ofAutism and DevelopmentalDisorders. 38, 1, 127-137.
Cihak DF (2011) Comparing pictorialand video modeling activity schedulesduring transitions for students withautism spectrum disorders. Research in Autism SpectrumDisorders. 5, 1, 433-441.
Crane L, Goddard L, Pring L (2009)Sensory processing in adults withautism spectrum disorders. Autism. 13, 3, 215-228.
Department of Health (2006) BetterServices for People with an AutisticSpectrum Disorder. The StationeryOffice, London.
Department of Health (2010a)Fulfilling and Rewarding Lives: The Strategy for Adults with Autismin England. The Stationery Office,London.
Department of Health (2010b)Towards ‘Fulfilling and RewardingLives’: The First Year Delivery Planfor Adults with Autism in England.The Stationery Office, London.
Department of Health (2010c)Implementing Fulfilling andRewarding Lives: StatutoryGuidance for Local Authorities and NHS Organisations to Support
Implementation of the AutismStrategy. The Stationery Office,London.
Department of Health (2010d) Equityand Excellence: Liberating theNHS. The Stationery Office, London.
Dunn W (1999) Sensory Profile. The Psychological CorporationUSA, San Antonio TX.
Durand MV (1990) Severe BehaviourProblems: A FunctionalCommunication TrainingApproach. The Guilford Press, New York NY.
Gerland G (2000) Finding out AboutAsperger Syndrome, HighFunctioning Autism and PDD.Jessica Kingsley Publishers, London.
Gillott A, Standen PJ (2007) Levels ofanxiety and sources of stress in adultswith autism. Journal of IntellectualDisabilities. 11, 4, 359-370.
Goodwin MS, Groden J, Velicer WF,Diller A (2007) Validating the stresssurvey schedule for persons withautism and other developmentaldisabilities. Focus on Autism andOther Developmental Disabilities. 22, 3, 183-189.
Grandin T (1984) My experiences asan autistic child and review ofselected literature. Journal of
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october 2011 19NURSING STANDARD
SummaryThis guide highlights the need for more training inautism awareness for people who have a specialistrole working in learning disability and mentalhealth services. A move beyond ‘basic’ awarenessto understanding autism from a sensory domain isneeded, and this includes the areas required for‘reasonable adjustments’ under the Equality Act2010. Training in autism should be facilitated withpeople with autism so that real examples can beused to illustrate the key areas of support.
Enabling access to services requires challengingbarriers in the environment, with the use ofcommunication and information, and challenginggeneral societal attitudes. It is, however, the visionof the Autism Strategy and within the jurisdictionof the Autism Act that the legislation is in place topromote a greater enablement and contribution ofpeople’s talents. The challenge will be to argue andlobby for the use of ‘reasonable adjustments’(Equality Act 2010) which will be the driver toenable effective long-lasting change to occur.
Orthomolecular Psychiatry. 13, 3,144-174.
Grandin T (1996) Thinking inPictures: and Other ReportsFrom My Life With Autism.Vintage Books, New York NY.
Groden J, Diller A, Bausman M et al (2001) The development of a stress survey schedule forpersons with autism and otherdevelopmental disabilities. Journal of Autism andDevelopmental Disabilities.31, 2, 207-217.
Hale A (1998) My World is not Your World. Archimedes Press,Ingatestone, Essex.
Harrison J, Hare DJ (2004)Assessment of sensoryabnormalities in people withautistic spectrum disorders.Journal of Autism andDevelopmental Disorders. 34, 6,727-730.
Jackson L (2002) Freaks, Geeksand Asperger Syndrome: A UserGuide to Adolescence. JessicaKingsley Publishers, London.
Joliffe T, Landsdown R, Robinson C(1992) Autism: a personal account.Communication. 26, 3, 12-19.
Kern JK, Trivedi MH,Grannemann BD et al (2007)
Sensory correlations in autism.Autism. 11, 2, 123-134.
Lawson W (2000) Life BehindGlass: A Personal Account ofAutism Spectrum Disorder. JessicaKingsley Publishers, London.
Leekam SR, Nieto C, Libby SJ, Wing L, Gould J (2007) Describingthe sensory abnormalities ofchildren and adults with autism.Journal of Autism andDevelopmental Disorders. 37, 5,894-910.
Loynes F (2001) The Impact ofAutism. The All PartyParliamentary Group for Autism.http://tinyurl.com/3tjzbol (Lastaccessed: August 2 2011.)
National Audit Office (2009)Supporting People with AutismThrough Adulthood. NAO,London.
National Autistic Society (2010) IExist, the Autism Act 2009 andthe Adult Autism Strategy.http://tinyurl.com/3nadz6c (Lastaccessed: August 2 2011.)
O’Neill JL (1998) Through the Eyesof Aliens: A Book About AutisticPeople. Jessica Kingsley Publishers,London.
Quill KA (1995) Teaching Childrenwith Autism: Strategies to
Enhance Communication andSocialization. Delmar Publishers,London.
Shabha G (2006) An assessment of the impact of the sensoryenvironment on individuals’behaviour in special needs schools.Facilities. 24, 1/2, 31-42.
Swain J, French S, Barnes C, Thomas C (1993) DisablingBarriers – EnablingEnvironments. SagePublications/Open UniversityPress, London.
Williams D (1998a) NobodyNowhere: The RemarkableAutobiography of an Autistic Girl. Jessica KingsleyPublishers, London.
Williams D (1998b) SomebodySomewhere: Breaking Free from the World of Autism. JessicaKingsley Publishers, London.
Williams D (1998c) Like Colour to the Blind: Soul Searching andSoul Finding. Jessica KingsleyPublishers, London.
Williams D (2002) ExposureAnxiety – The Invisible Cage: An Exploration of Self-protectionResponses in the AutismSpectrum and Beyond. JessicaKingsley Publishers, London.
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20 october :: 2011
Mot
ivat
ion
Ass
essm
ent
Sca
le (
Dur
and
1990
)
TAB
LE
5
Nam
e Ra
ter
date
Beh
avio
ur d
escr
iptio
n
Sett
ing
desc
riptio
n
Inst
ruct
ions
: The
Mot
ivat
ion
Ass
essm
ent
Scal
e is
a q
uest
ionn
aire
des
igne
d to
iden
tify
thos
e si
tuat
ions
in w
hich
an
indi
vidu
al is
likel
y to
beh
ave
in c
erta
in w
ays.
From
thi
s in
form
atio
n, m
ore
info
rmed
dec
isio
ns c
an b
e m
ade
conc
erni
ng t
he s
elec
tion
ofap
prop
riate
pre
vent
ion,
dis
trac
tion
and
man
agem
ent
stra
tegi
es. T
o co
mpl
ete
the
ques
tionn
aire
, sel
ect
one
beha
viou
r th
at is
of
part
icul
ar in
tere
st. I
t is
impo
rtan
t th
at y
ou id
entif
y th
e be
havi
our
very
spe
cific
ally
. ‘Agg
ress
ive’
, for
exa
mpl
e, is
not
as
good
ade
scrip
tion
as ‘h
its h
is s
iste
r’. O
nce
you
have
spe
cifie
d th
e be
havi
our
to b
e ra
ted,
rea
d ea
ch q
uest
ion
care
fully
and
circ
le t
he o
nenu
mbe
r th
at b
est
desc
ribes
you
r ob
serv
atio
ns o
f thi
s be
havi
our.
0=
Nev
er,
1=A
lmos
t N
ever
, 2
=Se
ldom
, 3
=H
alf t
he T
ime,
4=
Usu
ally
5=
Alm
ost
Alw
ays
6=
Alw
ays.
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october :: 2011 21
Cont
inue
d ov
er p
age
Que
stio
nsN
ever
Alm
ost
Seld
omH
alf t
heU
sual
lyA
lmos
tA
lway
sne
ver
time
alw
ays
01
23
45
6
1.W
ould
the
beh
avio
ur o
ccur
0
12
34
56
cont
inuo
usly
, ove
r an
d ov
er,
if th
is p
erso
n w
as le
ft a
lone
for
long
per
iods
of t
ime?
Fo
r ex
ampl
e, s
ever
al h
ours
.
2.D
oes
the
beha
viou
r oc
cur
follo
win
g 0
12
34
56
a re
ques
t to
per
form
a d
iffic
ult
task
?
3.D
oes
the
beha
viou
r se
em to
occ
ur
01
23
45
6in
res
pons
e to
you
r ta
lkin
g to
oth
er
peop
le in
the
roo
m?
4.D
oes
the
beha
viou
r eve
r occ
ur to
get
a0
12
34
56
toy,
food
or a
ctiv
ity th
at h
e or
she
has
be
en to
ld t
hey
cann
ot h
ave?
5.W
ould
the
beh
avio
ur o
ccur
rep
eate
dly,
01
23
45
6in
the
sam
e w
ay fo
r ve
ry lo
ng p
erio
ds
of t
ime
if no
one
was
aro
und?
Fo
r ex
ampl
e, r
ocki
ng b
ack
and
fort
h fo
r ov
er a
n ho
ur.
6.
Doe
s th
e be
havi
our
occu
r w
hen
any
01
23
45
6re
ques
t is
mad
e of
thi
s pe
rson
?
7.D
oes
the
beha
viou
r oc
cur
whe
neve
r yo
u st
op a
tten
ding
to t
his
pers
on?
01
23
45
6
Autism 2011_Layout 1 08/09/2011 17:40 Page 21
22 october :: 2011
Mot
ivat
ion
Ass
essm
ent
Sca
le
TAB
LE
5
Que
stio
nsN
ever
Alm
ost
Seld
omH
alf t
heU
sual
lyA
lmos
tA
lway
sne
ver
time
alw
ays
01
23
45
6
8.D
oes
the
beha
viou
r oc
cur
whe
n yo
u 0
12
34
56
take
aw
ay a
favo
urite
toy,
food
or
act
ivity
?
9.D
oes
it ap
pear
to y
ou t
hat
this
0
12
34
56
pers
on e
njoy
s pe
rfor
min
g th
e be
havi
our?
(I
t fe
els,
tast
es, l
ooks
, sm
ells
and
/or
soun
ds p
leas
ing?
)
10.
Doe
s th
is p
erso
n se
em to
do
the
01
23
45
6be
havi
our
to u
pset
or
anno
y yo
u w
hen
you
are
tryi
ng to
get
him
or
her
to d
o w
hat
you
ask?
11.
Doe
s th
is p
erso
n se
em to
do
the
01
23
45
6be
havi
our
to u
pset
or
anno
y yo
u w
hen
you
are
not
payi
ng a
tten
tion
to h
im
or h
er?
For
exam
ple
if yo
u ar
e si
ttin
g in
a
sepa
rate
roo
m, i
nter
actin
g w
ith
anot
her
pers
on.
12.
Doe
s th
e be
havi
our
stop
sho
rtly
aft
er0
12
34
56
you
give
the
per
son
the
toy,
food
or
activ
ity h
e or
she
has
req
uest
ed?
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13.
Whe
n th
e be
havi
our
is o
ccur
ring,
0
12
34
56
does
the
per
son
seem
cal
m a
nd
unaw
are
of a
nyth
ing
else
goi
ng o
n ar
ound
him
or
her?
14.
Doe
s th
e be
havi
our
stop
occ
urrin
g 0
12
34
56
shor
tly a
fter
(one
to fi
ve m
inut
es)
you
stop
wor
king
or
mak
ing
dem
ands
of
thi
s pe
rson
?
15.
Doe
s th
is p
erso
n se
em to
do
the
01
23
45
5be
havi
our
to g
et y
ou to
spe
nd s
ome
time
with
him
or
her?
16.
Doe
s th
e be
havi
our
seem
to o
ccur
0
12
34
56
whe
n th
is p
erso
n ha
s be
en to
ld t
hat
he o
r sh
e ca
n’t
do s
omet
hing
he
or s
he
had
wan
ted
to d
o?
Resu
ltsSe
nsor
yEs
cape
Att
entio
nTa
ngib
le
1.2.
3.4.
5.6.
7.8.
9.10
.11
.12
.
13.
14.
15.
16.
Tota
l sco
re
Mea
n sc
ore
Rela
tive
rank
ing
The
ques
tionn
aire
is d
esig
ned
so th
at y
ou lo
ok a
t wha
t res
pons
e yo
u ga
ve to
eac
h qu
estio
n an
d yo
u in
sert
the
num
ber f
or th
at q
uest
ion
next
to it
.. You
then
com
plet
e th
is
proc
ess
for a
ll 16
que
stio
ns a
nd a
dd u
p th
e to
tal s
core
in e
ach
of th
e fo
ur c
olum
ns. T
he c
olum
n w
ith th
e hi
ghes
t num
ber i
s th
e lik
elie
st fu
nctio
n of
the
beha
viou
r. Th
is is,
how
ever
, not
a d
efin
itive
ans
wer
and
oth
er fo
rms
of d
ata
colle
ctio
n, s
uch
as A
BC c
hart
s, sh
ould
to b
e us
ed to
gai
n a
wid
er p
ictu
re.
Autism 2011_Layout 1 08/09/2011 17:40 Page 23
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