The National Autistic Society (NAS) describes Autism as: A lifelong developmental disability that affects how a person communicates with, and relates to, other people and the world around them. It is a spectrum condition, which means that, while all people with autism share certain areas of difficulty, their condition will affect them in different ways. Asperger syndrome is a form of autism. (NAS, website)
Autistic Spectrum Disorders (ASD) can have an effect on the ability of a child to learn and participate in the classroom, however, there are ways to ensure autistic children learn and participate within the mainstream environment.
As a teacher of Support for Learning, I am working in both the Primary and Secondary sectors. My role involves supporting children with additional needs within a mainstream school, either in the classroom, one-to-one or in small groups. The pupils I support display an array of additional needs including those exhibiting autistic tendencies.
Looking at a case study of a child within a mainstream primary school exhibiting autistic tendencies, this assignment discusses the topic of ASD; the historical aspects, characteristics, theories and diagnosis, policy and legislation, and support provided.
The Case Study Child
Pupil N is 10 years old, and in primary 5. When the family moved from England to Scotland he was held back for a year in nursery due to delayed development. He had communication and language difficulties which were amplified when he started nursery in a Scottish school, not only did he have difficulties understanding spoken language, but he now had to contend with the Scottish accent as well.
To gain some background information, I designed a questionnaire for parents to complete. The questionnaire was carried out verbally during a telephone conversation with N's mother. During the conversation, she also clarified some of the questions in more detail. (See appendix 1)
As shown in the questionnaire, and from my own observations, some of the characteristics displayed by pupil N, which are identified in the triad of impairments, include: lack of eye contact, poor social skills, difficulty in forming friendships with peers, delayed speech although he now speaks fluently, however he does have difficulty in understanding language; liking for sameness, a special interest in tractors, does not initiate and sustain conversation, has had frequent diarrhoea and issues with going to the toilet, which seems to have improved as he has grown older; he can also occasionally, swear and display aggressive behaviour towards others, and gets in trouble for this at school.
The Historical aspects of Autism
Research in Autism dates back to 1938, though Wing (1993) suggests there were accounts in literature prior to this, but states there is no information as to the occurrence of autism before the second half of the twentieth century, however Volkmar, et al (2005) suggests that in 1867 Henry Maudsley possibly made the first step toward a classification by grouping children with peculiar, unhinged behavior under the label 'insane'. He suggested a number of subgroups, one of which he called 'instinctive insanity', which could indicate that some of the children he discussed had ASD.
Studies carried out by Kanner in 1943 involved children identified as having conditions which were different and unique from anything recognized so far. Around the same time, but independently, Asperger also carried out work in the same field.
All of the children in Kanner's study were different but displayed very similar characteristics; the common elements found in these children included a lack of emotion, repetitive actions, speech formation problems, ability to manipulate various objects, learning difficulties, and their levels of intelligence.
Kanner noted the symptoms were very similar to those of schizophrenia however, they appeared to manifest at a much earlier age. He assumed that â€¦..
'these children had come into the world with an innate inability to form the usual, biologically provided affective contact with people'. (Kanner, 1943 p250)
Asperger discovered many individuals had similar problems with social skills and repetitive actions but did not have trouble with learning or their cognitive abilities. Some showed exceptional talents or abilities that were considered outstanding.
Both Kanner's 1943 study "Autistic Disturbances in Affective Contact" and Asperger's 1944 study "Autistic Psychopathy in Childhood" are important in early autism research, though Asperger's study was not translated into English until 1991 by Dr. Uta Frith. (Long, B. 2007, website)
Both Kanner and Asperger described autism as a distinctive developmental disorder that had not been clinically described before; people suffering from it were unduly considered to be mentally handicapped. (Bogdashina. 2005)
There has been much research, and varying theories in the field of autism since the studies of Kanner and Asperger, however there does not appear to be a single core deficit, nor is there a cure.
Authors such as Happe (1994), Powell and Jordan (1997), Sicile-Kira (2003), Bogdashina (2005), and Lathe (2006), discuss the most universally used criteria for defining and diagnosing autism which is known as 'Wing's Triad of Impairments'. The Triad of Impairments is based on certain behavioural characteristics, described by Schreibman (2005) as deficits, which are exhibited in three main areas: impairments of social interaction, impairments in social communication and impairments in imagination.
Impairments of Social Interaction
Wing (2003) suggests this can be shown in different ways, and groups them into four categories:
The aloof group
Probably the most common social impairment in young children; behaving as if other people do not exist, and not responding when spoken to; appearing to have empty expressionless faces unless displaying extreme anger, distress or joy. They tend not to want to be touched, and do not make eye contact; rather they look past or straight through you. They show no sympathy if you are in pain or upset, and seem to be in a world of their own. For some it may change as they grow older, but for others it may continue throughout life.
The passive group
Children and adults are not completely cut off and accept approaches from others; however they do not instigate social interaction; also having difficulties with eye contact but can often make contact when reminded. Passive children are happy to join in games but can often be left out when games change.
Generally, their behaviour is less problematic although some can display disturbed behaviour during adolescence.
The 'active but odd' group
People in this category can initiate contact with others but this can appear odd and inappropriate, and tends to be with those in charge rather than their peers. They appear to be concerned with their own needs rather than those of others. When not getting the attention they want, they can behave aggressively towards others, due to the lack of understanding of social interaction.
The over-formal, stilted group
This type of behaviour usually manifests in later adolescence, in those who are more able, with a good level of language.
They tend to be over polite and formal, and try very hard to be well behaved. However, they do not fully understand the rules of social interaction and have difficulty adapting their behaviour to different situations.
Impairments of social communication
Baron-Cohen (2008) claims that if children do not produce single words by the age of two, or phrased speech by the age of three; they are identified as having language delay. Pupil N did not speak until nursery age, even then, he could not form the words properly and was referred for Speech and Language Therapy (SALT).
Wing (2003), suggests that all children and adults with ASD have communication problems; however Baron-Cohen (2008) suggests there is no speech and language delay with Asperger Syndrome.
Wing (2003) states that speech and language delays are common, some may never speak at all. Those who do speak often start by repeating words 'echolalia', spoken by others. Echolalia can be immediate or delayed. With delayed echolalia, they can often repeat something randomly that they have heard previously, which could be some time ago.
The level of understanding varies; most have some understanding although this can be limited. They also have difficulties in understanding non-verbal communication such as nodding one's head, and facial expressions.
A major characteristic is that they take things literally, for example, if they were told it is 'raining cats and dogs', they would expect to see cats and dogs falling from the sky, therefore care is needed when speaking to a person with an ASD; figures of speech can be taken at face value, leading to stress and terror.
The majority of people with ASD have an 'odd' monotonous tone when speaking, which can be inappropriate, they can occasionally speak too loud or too quiet; some often use 'their special voice' which is different from their own.
Impairments of Imagination
Children with ASD are unable to develop imaginative play. Some do show evidence of imaginative play; however it tends to be very repetitive, doing the same thing over and over again. Some may even copy a character they have seen on television or in a book, or a non-living object, but also in a repetitive manor.
Other repetitive activities include tapping, tasting, smelling, feeling and scratching different surfaces, and some can inflict self-injury in the form of scratching, biting and head-banging. (Wing, 2003)
Other features suggested by Sicile-Kira, (2003) include:
Not liking change in routine or environment
Not reaching developmental milestones
Only eating certain foods
Eating or chewing unusual things
Lacking of common sense
Not understanding simple requests
Frequent diarrhoea, upset stomach or constipation.
Theories in Autism
Theoretical approaches to research in Autism include neuropathological and neuropsychological.
Neuropathology relates to the central nervous system and brain. Discussed by Frith (2003) and Feinstein (2010), Kemper and Bauman carried out a study which led to autism being treated as a biological disorder. They found that cells in the hippocampus, subiculum and amygdala; parts of the brain associated with emotions, space, behaviour and memory (O'Mara et al, 2009), were decreased in size and closely packed, and suggested the irregularity occurred in the cells during early development.
Anthony Bailey noted that four out of six people with autism had unusually large heavy brains, and Dr. Eric Courchesne reported that he found evidence of rapid brain overgrowth in the first year, in infants who develop autism.
Dr Manuel Casanova investigated mini-columns of neurons; the smallest unit of cells capable of processing information, and suggested they are smaller and more abundant in autistic people.
Gillberg, Kemper and Bauman were interested in both sides of the brain as the left side deals with linguistic performance, while the right side deals with non-verbal communications such as, gestures and emotional expression, which are impaired in autism. (Feinstein, 2010)
The non-social features that have been explained by researchers include: theory of mind, weak central coherence, executive dysfunction and joint attention.
Theory of Mind
Theory of mind is the ability to impute mental states to self and others. (Doherty 2008)
Baron-Cohen, Leslie and Frith (1985) suggested that autistic children do not develop theory of mind (ToM). Research was carried out by using 'the Sally Anne test' (See appendix 2) which suggested that they suffer from mind blindness and cannot envisage what others might think.
ToM attracted criticism due to the fact that dolls were used instead of real people. Baron-Cohen cited by Feinstein (2010), stated that the test produced similar results after being carried out again with real people.
Weak central coherence
Normally developing people process information by looking at and understanding the whole picture. Frith and Happé cited by Rajendran and Mitchell (2007), suggest people with autism process the component parts individually rather than the whole; indicating that they have weak global coherence.
Shah and Frith tested central coherence using the Wechsler block design (See appendix 3), which requires children to use separate blocks to construct an entire design. They found that autistic children produced a higher score than others in the test, and were also faster in constructing the design. (Frith 1985, Shah and Frith, 1993)
Frith, cited by Rajendran and Mitchell (2007), argues that autistic people perform better on these tasks because they lack the understanding of global form.
Executive function (EF) is defined as the ability to sustain problem-solving activities for achieving future goals. EF is used for activities such as planning, organizing, strategizing and paying attention to and remembering details.
Researchers have noted that symptoms that are not explained by ToM can resemble specific brain injury symptoms, which has led to Ozonoff theorizing that autism could be explained as a deficit in EF. However, different researchers have produced differing results, which suggests that not all autistic individuals exhibit EF problems, also, these difficulties are seen in other disorders and not exclusive to autism. (Rajendran and Mitchell 2007)
Joint attention is the way in which one draws somebody's attention to a stimulus by gazing or pointing. This developmental milestone emerges around six months of age. Charman (2003) suggests impairments in joint attention are among the earliest signs of the disorder.
There has been other hypothesis suggested as causing autism such as the triple MMR (measles, mumps, rubella) vaccine, implicated by Dr Andrew Wakefield, which is administered to children at eighteen months, around the same time that autism is most commonly detected.
Rutter, cited by Feinstein (2010), stated that although research has pointed out that there is no link between autism and the MMR, there are still some parents who choose to have individual vaccinations for their children.
Although many theories have been connected with the origins of autism, the core deficits of the disorder are still unknown. Kemper, cited by Feinstein (2010), stated:
"there is not going to be one cause or treatment".
Sicile-Kira, (2003) states that there is no medical test to diagnose ASD, and any diagnosis is based on observation of behavioural characteristics.
Medical practitioners base the diagnosis on guidelines set out in the World Health Organization's International Classification of Diseases (ICD-10), which requires that all three of the triad of impairments are present at 36 months of age; or the American Psychiatric Association's system the Diagnostic and Statistical Manual (DSM-IV) and (DSM-IV-TR), which also requires that the age of onset should be recorded. (AWARES.org, website)
The ICD-10 specifies that at least 8 of the 16 specified items must be fulfilled, which should include 3 from Impairments of reciprocal social interaction, 2 from Qualitative abnormalities in communication, and 2 from Restricted, repetitive, and stereotyped patterns of behaviour, interests and activities.
The diagnosis for Asperger Syndrome is similar to Autism however; the diagnosis requires that single words should have developed by two years of age or earlier. (World Health Organization, 1993)
The Criteria from DSM-IV specifies there should be a total of six or more items which includes 2 from Qualitative impairments in social interaction, 1 from each of the other areas.
For Asperger Syndrome, the DSM-IV also states there should be no significant impairments in language communication. (American Psychiatric Association, Internet source)
The guidelines for diagnosing autism differ from each other in that the ICD-10 requires a minimum of 8 manifestations for a diagnosis, whereas, the DSM-IV only requires 6. It appears that a person may or may not be diagnosed with autism, depending on which criteria are used.
After many conversations with researchers, Feinstein (2010) suggests that there has been an increase in the prevalence of Autism, possibly due to the expansion of the spectrum and improvements in diagnostic tools.
Dorothy Bishop re-tested adults diagnosed with speech and language disorder as children, but not autism, which resulted in a quarter of them being re-diagnosed with autism. (Feinstein, 2010)
Criticisms of diagnostic criteria
Cited by Feinstein (2010), researchers such as Lorna Wing, Dr Patricia Howlin, Christopher Gillberg, and Dr Fred Volkmar who was on the DSM-IV classification drafting committee, have criticized the ICD-10 and DSM-IV, especially as far as Asperger syndrome is concerned. They suggest it is very feigned; both criteria state that spoken language must be normal for an Asperger syndrome diagnosis, when in fact; Asperger originally stated that peculiarities of speech and language were a key feature.
Fombonne (1999) suggests that there are more boys than girls diagnosed with autism; on the other hand, Dr Judith Gould cited by Hill (2009) argues that doctors are failing to diagnose thousands of girls who have Asperger's syndrome, and suggests that girls are not being noticed in the first place, or if they ask for help, they are being turned away and are often rejected when referred for diagnosis.
Pupil N appears to display many signs of autism but does not have a medical diagnosis; however he has been diagnosed with speech and language delay, and health issues such as toileting.
HMIE (2006), state that for best practice, education authorities should not limit support only to those with a formal ASD medical diagnosis.
There are many reasons why N may not have an official diagnosis. Autism is very complex; therefore it is possible that the behaviours he displays fit into more than one category, or none at all, depending on any criteria used, which can make it difficult to ascertain. Also, diagnosis can be time consuming and perhaps stressful for the child and the parents.
A survey carried out by Osborne and Reed (2008) examined how communication between parents and professionals concerning ASD and its diagnosis, could be facilitated; most parents wanted a quicker and easier process, and would prefer the procedure to be more consistent in content and structure. They also called for better professional training and awareness about ASD, especially regarding the information that professionals possess, and the interpersonal skills of some professionals.
Sicile-Kira, (2003) suggests if parents have concerns about their child, it is important to seek advice from a medical professional who is experienced in ASD, and acquire a diagnosis as early as possible to gain access to services.
Another reason which may prevent a parent from requesting a medical diagnosis is the stigma of labeling a child.
Labeling can suggest a low overall attainment compared with their peers, have an effect on the attitude and behaviour of teachers towards children, and affect the children themselves. (Hart, et al, 2004)
Authors such as Sicile-Kira, (2003) and Ho, (2004) comment that labels ascertain the eligibility for people to access benefits and services, however, Ho (2004) also argues that it provides an excuse for school officials to assume a medical model of learning disabilities, and ignore other problems in our educational and social systems that give rise to a range of students' learning difficulties.
Policy and Legislation
In 2001, Scottish Ministers commissioned the Public Health Institute of Scotland (PHIS, now NHS) to carry out a needs assessment of services for people with ASD in Scotland. The aim was to look at current service provision, and provide advice on how the services could better meet the needs of both children and adults with ASD. The report suggested a lack of understanding amongst service providers of the nature of ASD and made 32 recommendations, resulting in the National ASD Reference Group being set up by The Scottish Executive in June 2002, to identify priorities to support the development of good practice across a range of services. (PHIS, 2001)
The Scottish Executive (2006) suggested an audit of training in each NHS board with a view to addressing training needs and gaps, this corroborates the earlier discussion that parents suggested there is a need for more professional training and awareness about ASD, however, the Scottish Executive (2006) only discussed training for health practitioners and not education.
In the past, pupils with additional needs would have been educated within a special school; recent legislation and policy such as The Standards in Scotland's Schools etc Act 2000, and The Education (Additional Support for Learning) (Scotland) Act, 2004, places a duty on education authorities to meet the needs of all pupils in a mainstream environment, where possible, alongside their peers, including those with additional support needs. Children are described as having additional support needs if they require additional support to enable them to make progress in their learning.
My local authority provides guidance to schools for supporting children with autism, with a staged intervention procedure to meet the needs of children and young people on the autistic spectrum, which acknowledges the role of multi-agencies in developing consistency in both school and home.
HMIE (2006) implies that some education staff feel they do not have enough knowledge and understanding of ASD therefore, training for all staff involved in the education of pupils with ASD is an important area to develop. They also argue that parents are not always kept fully informed about the range of provision available for their children, implying there is a greater need for collaboration between parents, teachers and other professionals.
The HMIE report highlights a conversation with N's class teacher (appendix 4), in which she commented that he is 'a bit strange', and gave the impression that she is unaware of N's difficulties, therefore, there is a need for more collaboration to develop a good working relationship with the class teacher, pupil and parents, in order to meet his learning needs.
Collaboration can mean different things to different people, at different times; on a professional level, through sharing good practice, it can improve effectiveness, self-reflection and teacher learning; on a personal level, it can enhance moral support and confidence.
Effective schools need effective communication and collaboration amongst staff, other agents, parents and pupils. (Head 2003)
Powell and Jordan (1997) state that a great deal of what needs to be taught to pupils with autism is out-with the curriculum, such as interaction and communication skills, therefore the needs of the child should determine the curriculum. Most children require some one-to-one teaching, not just to address their difficulties, but also develop their skills and strengths.
Pupil N was known to the Speech and Language Services in England prior to moving to Scotland (See appendix 5), and received some one-to-one support in the form of SALT, which continued until 2007. He then received an Individualised Educational Programme (IEP) and support at school level to address his literacy skills.
When I started this post a teacher of SFL in January 2010 pupil N was being removed from class along with five other pupils, to work on the literacy program Read and Write Inc (RWI) (See appendix 6), which provides a structured approach to the teaching of phonics and literacy. (Miskin, R, website - updated 2010)
As I did not know anything about the pupils at the start, I decided to re-assess their reading ability in the RWI programme, and found that although pupil N could read the words, he did not fully understand.
I have recently been involved in auditing pupils' needs within the school, to identify that require high, medium and low priority support, along with colleagues, with a view to making changes in the way support is offered, and produce an IEP for those who need one. Up until now, all the pupils have been coming out of class for support rather than receiving in-class support. The changes would allow more targeted support to meet the individual needs of the children, within the class, individually, and in small groups.
Children have the right to say what they think should happen and have their opinions taken into account when adults are making decisions that affect them (UNICEF, 1991), therefore, the audit included a questionnaire to find out what support and help the pupils felt they needed. When asked, it appeared that pupil N did not fully understand the questions; however, he did say that he liked to come out of class, preferably on his own. (See appendix 7)
During the audit, I discovered that the last IEP for pupil N was in 2008, and had not been reviewed. Through collaboration with pupil N, his class teacher and parents, a new IEP has been developed. (See appendix 8) During a conversation with N's mother at parents' evening, she felt his needs were not all being appropriately met, she had not been fully informed of his progress except through yearly class-teacher reports, and was unaware that N had previously received an IEP. A copy of the new IEP has been sent home to parents to allow them to become more involved in N's learning and development, which should have been done with his previous IEP. The class teacher, parents and I will now take steps in working towards developing strategies to enable N to meet his IEP targets and enhance his learning to make further progress.
Very little was known about autism during the early part of the twentieth century; however, since the reports by Kanner and Asperger, much research has been carried out.
Many hypotheses have been identified and researched, such as Theory of Mind, Weak Central Coherence, Executive Dysfunction and Joint Attention and impairments in the function of various parts of the brain. The MMR vaccine has also been implicated in the cause of autism; though this was dismissed through further research.
Although there has been much research into possible causes, and the various theories look as if they may all be related, there does not appear to be one single cause, but rather, many; those with autism seem to display traits from all of the theories in varying degrees.
For a diagnosis, there needs to be a display of the characteristics from the Triad of Impairments, however the criteria for diagnosis differs, in that, a person may or may not be diagnosed with autism, depending on whether the ICD-10 or the DSM-IV is used.
Although Pupil N does not have a formal ASD diagnosis, he does display many characteristics, and according to HMIE (2006), for best practice, he should receive the support as he would if he was diagnosed.
After carrying out the audit of needs for all the pupils with additional needs in the school, it appeared that although pupil N had made much progress in terms of speech and reading, there are other difficulties and strengths, which have not yet been addressed. The new IEP which has been developed in collaboration with the pupil, parents, class teacher and I is the start of working towards meeting those needs. There will be a review in three months time to assess progress, and a continued support and review cycle thereafter.