Steig Larsson's phenomenally successful trilogy is yet another recent populist portrayal of someone with Asperger syndrome or on the autism spectrum with extraordinary gifts to be envied. This is a skewed neuro-typical view of the autism world.
In my role as a teacher with a Local Authority autism support service, I am tasked with daily support of schools and FE Colleges who generally request help with the difficulties and the conundrums of the square pegged children in the round holed world of education. To define the needs of a pupil with Asperger syndrome in schools it is necessary to outline the umbrella term Pervasive Developmental Disorder (PDD) and its associated sub groups, then to place Asperger in context, and outline those strategies that are required to make pupils experience of school more positive and fulfilling. As Tessa Gittens and Maureen Aarons state clearly in their guide for parents and professionals, written 20 years ago in 1992, then for most people autism meant "Rainman" as portrayed by Dustin Hoffman and everyone on the spectrum was withdrawn, odd and a savant. Schools have moved forward in their understanding in the intervening two decades but many still need significant support and professional input.
Asperger syndrome is subgroup of autism, which in turn is a PDD. Autism was first described and the word first used in 1916 by Paul Eugen Bleuler (1857 - 1939), a Swiss psychiatrist. Bleuler was working with a group of psychotic adult patients in whom he observed specific cognitive processes that are described by Schura (2001) as visionary and dreamlike with impulsive illogical thinking. Bleuler proposed that these visionary and undisciplined cognitive processes caused the patient a loss of contact with reality. It was this withdrawal and a consequential detachment from the social world that was "autism". Bleuler's definition of autism describes what Schura terms a detachment psychotic terms rather than a separate psychiatric condition.
The etymology of the word "Autism" as coined by Bleuler is from the Latin 'autismus' which in turn is derived from the Ancient Greek 'Î±á½Ï„ÏŒÏ‚' or 'autos' meaning "self".
Leo Kanner (1894 - 1981) wrote in 1943 in his paper "Autistic disturbances of affective contact" about a group of children who were suffering from autistic aloneness which impacted significantly on their behaviour. Kanner described this pattern of behaviour as "early infantile autism". The following year Hans Asperger (1906 -1980) wrote a paper describing "autistic psychopathy", which is now known as Asperger syndrome. When Kanner and Asperger wrote their seminal papers, autism was considered a very rare condition; a view that persisted until the 1980's, when research indicated much higher rates of prevalence. Whiskens (2010) describes Kanner as believing that infantile autism was a genetic disorder but was swayed by the prevalent psychoanalytical theories of America in the 1940's to describe it as a purely emotional disorder. Opinion changed from the 1960's as a result of pressure from parental groups and scientific investigation. Autism is now recognised as a PDD, which also includes Rett Syndrome, PDD-Not Otherwise Specified (PDD-NOS) and childhood disintegrative disorder.
It is believed that Kanner and Asperger never met so it is a striking coincidence that they should be use the same term to describe two distinct groups with the same disorder.
The Triad of Impairment, as defined by Wing and Gould in 1979 is now recognised as the diagnostic criteria for Autistic Spectrum Disorder (ASD), and consists of impairment in social interaction, impairment in social communication and impairment in thought and imagination. This triad is recognised by the World Health Organisation's register, the International Classification of Diseases, ICD-10 (1992), and the American Register of Psychiatric Disorders, the Diagnostic Statistical Manual of Mental Disorders, DSM-IV (1994). Updates are planned, with DSM-V due for publication in 2013 and ICD-11 in progress. An interim update to DSM-IV, DSM-IV-TR was published in 2000.
It is now widely recognised that sensory difficulties are significant by academics such as Dunn, Talay-Ongan and Bogdashina, but the DSM and ICD criteria make no provision currently for including such difficulties diagnostically. Henshall (2008) reports that sensory responses were included in the DSM-III criteria in 1980, but were removed in subsequent versions. Under the umbrella of ASD the following three terms can be defined, Autistic Disorder, Asperger syndrome and Atypical Autism / PPD-NOS. Autistic Disorder is a PDD that is defined as impairment in all three areas of the triad. Atypical Autism and PDD-NOS is impairment in some but not all areas of the triad. Asperger syndrome is marked by impairment in social interaction and flexibility of thought, but where language and cognitive development has no delay or "retardation".
In 1981 Lorna Wing reappraised Hans Asperger's original paper and clarified six descriptor of Asperger syndrome as follows, as outlined in Cumine, Leach and Stevenson (2001) -
Impaired initiated and reciprocated social interaction.
Pedantic speech with stereotyped content, but not delayed.
Restricted non-verbal communication skills.
Difficulties with change and a need for repetitive activities.
Impaired motor control.
The difficulties experienced by a child with Asperger syndrome can be described and expanded upon by the psychological models Theory of Mind, Central Coherence Deficit, and Executive Function Deficit.
Theory of Mind is the ability, in psychological terms, to appreciate others mental states. That is, an appreciation of another person's intentions, needs, desires, beliefs as being different. It is suggested that people with Asperger syndrome have impairment in Theory of Mind, or what Baron-Cohen describes as "Mind Blindness", and this leads to a distorted pattern of development.
The implications of impaired Theory of Mind, as outlined by Jordan and Powell (1995), are extensive and impact significantly on the performance in a mainstream setting without modifications and strategies to adapt the environment and curriculum. These implications include difficulty predicting other people's behaviour, difficulties understanding the motives of others, difficulties understanding emotions, difficulties understanding the impact of their behaviour on others, difficulties anticipating others actions, difficulties gauging level of interest of the listener, difficulties separating fact from fiction, difficulties turn taking and other social skills, and a possible inability to deceive or tell lies.
Central Coherence is the ability to combine disparate and diverse material into a central and cohesive whole with a higher meaning. Impairment in this ability is characterised by an inability to see the 'whole picture' or understand context. The implications in school for weak central coherence are unpredictable focus of attention, imposition of own perspective, resistance to change, difficulties with new tasks, difficulties choosing and prioritising, difficulties with personal organisation, generalising and transferring skills, and possible lack of compliance.
Executive function is defined by Luria (1980) as an ability to plan ahead to achieve a future goal. The key behaviours regulated and controlled by Executive Function include planning, self-monitoring, flexibility, and an ability to picture what Goldman-Rakic (1987) calls the "inner models of reality". The key impact of impaired Executive Function for a pupil are difficulties perceiving emotion, difficulties planning, difficulties initiating and completing tasks, and difficulties with play and pretending.
Educational Implications of Asperger syndrome in a mainstream setting
Typically a pupil in a mainstream setting with Asperger syndrome is going to present staff with a number of issues that will complicate their peer interactions, daily coping mechanisms and ability to successfully and consistently access the curriculum. These difficulties arise from the impaired ability to interact socially with peers and adults, including initiating and reciprocating interaction appropriately. There is also likely to be a rigidity of thinking and adverse response to unplanned changes, plus complications communicating despite an apparently sophisticated use of language. Consequently these pupils often have very spikey profiles and can be vulnerable to bullying or stigmatisation by their peers.
Although not included in the DSM or ICD criteria the pupil is likely to have one or more sensory impairments, be it hyper or hypo sensitivity to the five main senses and or proprioceptive and vestibular difficulties. With these four impairments, a combination of weak central coherence, weak Theory of Mind and a deficit of Executive Function requires a person centred and highly tailored menu of support.
An outline of my approach to assessment of a mainstream pupil with Asperger syndrome
From my experience of working with a Local Authority Complex Communication Difficultly and Autistic Spectrum Condition (CCD/ASC) team to support mainstream schools the following assessment method is effective in determining the initial strategies required to support a pupil with Asperger syndrome.
The school makes a request for involvement from the CCD/ASC team member responsible for their High School pyramid, who responds within an agreed timeframe if the request is approved as appropriate by the team manager. The agreed timeframe is a team set performance target that monitors time of response to the request, the time within which the appointment for the assessment to take place and a twenty working day limit for returning the written report. The written report is generally copied to all relevant professionals and parents. In every case parental permission is essential before an assessment can be made. Team members are assigned to High School pyramids to ensure a working relationship is established with the schools, and with the aspiration that a team member can potentially support a pupil through Nursery, First School, Middle School, High School and then hand over effectively to the Further and Higher Education team where relevant. This arrangement also ensures consistent and appropriate support at phase transfer, particularly as this Local Authority still operates a three tier system.
Allow the target of twenty working days for a written report to be returned appears long, interim verbal feedback is generally given on the day of the assessment or verbally very soon afterwards to ensure prompt implementation of any recommendations made.
The team manager does not have a prescribed assessment model in place, and each team manager is empowered to work in a way that is effective for them and the setting requesting support. All support in this Local Authority is multi-disciplinary, so although the CCD/ASC team does not have any specific formalised diagnostic tools they liaise closely with Speech and Language Therapy, the Educational Psychology Service, the Learning Support Team and Occupational Health, and any other professionals involved who share the outcomes of their specialised and specific diagnostic assessments.
A typical assessment for a new pupil presenting with Asperger syndrome-like difficulties or a diagnosis of Asperger syndrome is based upon discrete classroom observation and interviews with the pupil, if appropriate, and key adults. A discrete initial classroom observation takes place during either a whole morning or whole afternoon session, based upon the advice of school - it is important to observe the pupil in those times where school feel they are having most difficultly. It is important that the observation is discrete so that the difficulties described by the triad can be assessed objectively. In my case I typically tell all the pupils in the class that I am there to observe the teacher, and make sure I speak with other pupils before approaching the named pupil so no-one is aware who is been assessed. An assessment observation would also aim to include playtime and lunchtime to objectively assess the difficulties presenting in more socially demanding and less structured times.
During the observation a record is made of social interaction, communication and flexibility of thought with notes made on timings, staffing levels, sensory features of the room, level of task set, number of pupils, and anything else likely to impact on the pupil (see attached copy of recording sheet). If felt appropriate then the pupil would also be discreetly interviewed, but this is dictated by advice from the school, the age of the pupil and the likely impact with peers if seen to be singled out. Background information is gathered by a structured interview with key staff, including class or subject teacher(s), teaching assistant(s), Special Education Need Co-Ordinator (SENCo), head teacher, lunchtime supervisors, playground supervisors, and parents. See example interview template attached.
As a team, we are then encouraged to spend time reflecting upon the information gathered, the observation notes, and input from other professions. This is then presented in a written report that summarises what was observed and makes recommendations for school to implement. The headings used include background information, socialisation, communication, flexibility of thought and behaviour, sensory issues, self-help / independence skills, academic development, fine / gross motor skills, learner's contribution, parental contribution, professional contribution, summary, and recommendations for school (see redacted copy of report template attached). These detailed Initial Assessment reports are also used in a slightly modified form to contribute to the multi-agency diagnostic panel and towards Statutory Assessment when requested.
The following strategies are typical of those recommended to schools that have been shown to be successful. However, as stated above each pupil is carefully assessed and specific and targeted strategies would be given that address their particular needs and those of the school.
Give instructions calmly and with positive expectation.
Use simple, minimal language.
Give clear time limits and use clocks or timers to show passage of time visually.
Give instructions one step at a time or in manageable chunks.
Unless there is a real choice, direct rather than asking. For instance, avoid asking, "Would you like to read?" or expect the answer, "No!"
Precede all instructions with the pupil's name so that they are aware that they are included in the instruction.
Reinforce verbal instructions with visual cues.
Ensure that instructions are given in the correct sequence.
Use positive direction. Tell the pupil what to do, rather than telling the pupil, "Don't â€¦"
Allow time for processing of language. Up to 8 seconds may be required before the pupil is able to respond.
Be aware that language may be interpreted literally and modify language used. Ensure that what you say is what you mean.
Keep facial expressions and gestures simple and clear.
Visual timetable and visual cue cards can be used.
Qualify general instructions to ensure the pupil is aware that they are included in the instruction.
Allow time for the pupil to get to know you.
Understand that the pupil may not be able to tolerate close proximity of others, especially those of a similar age.
Allow some time to be solitary.
Provide something to 'fiddle' with such as a stress ball, or lump of Blu-tack.
Teacher (or TA) to be confident to re-focus pupil as required. Use their name first and follow this with a positive direction. This can be done with visual cues only.
Implement a social skills programme, e.g. Socially Speaking, Talkabout.
Start at the pupil's level and move at their pace when trying to develop interaction.
Teach some structured leisure activities or games.
Learn table-top games such as board-games to encourage turn-taking skills.
Identify what the pupil likes and dislikes socially - use this information when planning activities.
Provide as much structure and routine as possible.
Introduce any change gradually.
Pre-warn of any change in known routine or personnel. The pupil should amend their own timetable.
Prepare the pupil carefully and thoroughly for transition between classes, schools, educational visits and celebrations such as Christmas. Visual timetables are invaluable at times of change and uncertainty.
If a pupil has a 'special interest', use it positively, i.e. as a motivator, a reward, a chill out activity.
Use Social Stories to teach appropriate behaviour in specific situations and to assist in any areas of rigidity, e.g. perfection.
Ensure that rewards and sanctions are made clear. Use the same policy as the class/school where appropriate.
Raise self-esteem by rewarding every success in a way which is tangible to the pupil, no matter how small
Ensure that the pupil is provided with a 'safe haven' (quiet area) to go to at break times and any other times of the day when 'Time Out' is required.
Plan 'Time-out' (when to go, where to go, who with, how long for, what to do, when to return) at times decided by staff and shown on visual timetable so that the pupil does not reach 'sensory overload'.
Give the pupil a pocket-sized 'Time-out' card so that they can monitor their own needs and request time in the 'safe haven'. All staff need to be aware of the existence of this card.
Remember to consider the environment, taking into account any sensory issues.
Be aware that what may be considered a comforting touch to others may cause discomfort or even pain to a pupil with autism.
Effective communication between ALL those involved with the pupil is essential. (A Home/School diary may be useful.)
Every pupil is different - different strategies work for different pupils.
If there are gross/fine motor difficulties, consider alternative methods of recording such as ICT, laptop etc.
Additional advice and support is generally required to support difficulties with motor control and sensory perceptual difficulties. Such strategies recommended might include tasks to rehearse and develop fine motor control such as Brain Gym, Activate, Shake & Wake, or action songs. Gross motor development activities such as SAQ, running between cones, low level balance beams, and bouncing on a trampoline.
Other common factors that play a significant part in the school day other than the demands of the curriculum and the social demands of mixing with peers and adults are the general coping strategies and confidence that neuro-typical pupils take for granted. Pupils with Asperger syndrome will typically have difficulties drawing upon those abilities to cope with the day-today demands of school such as homework, retrieval of information lack of a sense of security and self-imposed perfectionism.
Many pupils with Aspergers syndrome have their lives compartmentalised and home and school do not mix, which makes the successful completion of homework difficult. In many schools this area is managed by the provision of a homework club which operates either during the lunch hour or after school. Staff awareness of this difficultly is often sufficient to diffuse a perceived idea of laziness or unwillingness to cooperate by the pupil.
Phase transfer can cause unexpected difficulties, apart from the stress associated with moving school site and the new routines and staff to become familiar with. It is the change in daily routines between key stages that are potentially very difficult to manage for pupils with Asperger syndrome, such as the Primary one class one teacher model to having to move classrooms every lesson and having six different teachers a day in the Middle School.
I have attempted to consider the differences between children with Asperger syndrome and children in the other subgroups by briefly outlining the historical background of Bleuler, Kanner, Asperger and subsequent research. I have then detailed the features of the subgroups and the diagnostic criteria of Asperger syndrome compared with the other subgroups. I have also detailed the three psychological models of Theory of Mind, Executive Function and Central Coherence and the impact of a weakness or impairment in those areas.
I have then used my personal experience of supporting mainstream settings to meet the needs of their pupils with Asperger syndrome and explained the process which the team I work with has adopted to make an assessment and provide appropriate strategies. As all pupils with Asperger syndrome have different needs and those needs change with the environment, the staff and their family circumstances I have outlined typical strategies appropriate for a mainstream school to use to meet the needs of difficulties arising from the triad and the psychological model of impairment.
In conjunction with those strategies there are also schools that respond more successfully through the sheer fact of their ethos and outlook is ASC friendly, and that certain staff have an affinity with pupils with Asperger syndrome that cannot be taught or acquired. Those schools and staff have common features, but they also have a refusal to see the Asperger syndrome as a difficultly or a reason for the pupil not to succeed.
Asperger syndrome-friendly schools are schools with rules, high expectations, clear discipline policies and what the Office for Advice, Assistance, Support and Information on Special Needs (OAASIS) terms "natural justice at its heart". They are also schools who strike a sensible balance between a vibrant environment displaying pupils work and meeting the needs of the neuro-typical population with the Asperger syndrome pupils need for calm and low distraction areas. The successful schools also have opportunities for lots of physical activity to engender team activities, physical fitness, and permit "picky" eaters to have their restrictive diets at lunchtime without prejudice. The curriculum is adapted and treated creatively to meet the needs of spikey profiles and idiosyncratic progress, with homework clubs and alternatives to the stressful playtimes enjoyed by the majority of pupils for whom no structure is not an issue.
These schools also offer autism awareness training for the staff and encourage all the adults working with pupils to understand the needs and quirks of the pupils.
Most importantly the successful schools and staff are those that consult, collaborate and have a go. Working with pupils with Asperger syndrome is not a linear experience, and no one person (expert or not) has the answer.
The key advice to anyone working in a school with a pupil with Asperger syndrome is get to know the pupil. They are all so very different.