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1
THE SCOPE OF THE PROBLEM â INTRODUCTION TO THE CHILDREN
Who are the âparadox childrenâ, the challenges they face and why do they need a âdifferentiatedâ educational program?
Rather than greeting his friends, family members and teachers with the usual âHelloâ or âHow are you?â Patrick will instead ask them, âWhat is your birthday? Where do you live? What is your car registration?â The next time he meets these people he recites their personal details and laughs with joy if he is correct, which is always. Patrick has an extraordinary memory for facts and information that he finds interesting.
Patrick, a rather chubby Italian boy with an infectious smile and laugh, is fourteen years of age. He lives with his mother and five brothers, of which he is the youngest, in the western suburbs of Sydney, his father having recently passed away. Along with his remarkable memory, Patrick has had a great love of numbers from the age of two. If asked to provide the day of the week of any date between 1900 and 2010, he can give the answer accurately within a few seconds. He can also correctly calculate five-and six-digit addition, subtraction, multiplication and division equations mentally within a few seconds, often faster than his teacher using a calculator. Patrick is both a calendar and an arithmetic calculator.
Rather than speak words, Patrick prefers to spell them. He spells most words accurately (two years above his chronological age) and can spell many words in Latin and also in Italian. He displays what is known as hyperlexic skills, which is the term used to describe the ability to decode letters and words without necessarily knowing their meaning. Patrick also loves the computer and without any formal training is able to use many software programs. His brother, who is a computer âgeekâ, discovered Patrick had removed some of his files, and hidden others on the family computer much to their frustration.
Bradley lives with his family in the Northern Beaches of Sydney. He is six years of age and has a younger brother and sister. Like Patrick, Bradley loves words. He enjoys reading street directories, the telephone book and encyclopedias for leisure. He is reading and spelling two years ahead of his chronological age. He could read and write the alphabet at the age of two years. When he is not reading, Bradley likes to construct electronic objects from LEGOâ˘, in particular traffic lights, stereos, computer, video-recorders, and batteries. He is fascinated by all things âelectronicâ, spending many hours each day on his constructions. His mechanical or visual-spatial skills are eight years in advance of his chronological peers. Like Patrick, he is very interested in numbers and enjoys reading maths tables. He counts to 1,000 forwards and backwards often by twos, fives and tens, laughing as if he were playing a game. On a test of number concepts and skills, he scored higher than 72 per cent of his non-disabled age-peers.
Terry is an only child and lives with his parents in Sydneyâs Northern Beaches. He is five years of age, is small in stature and has blond hair and blue eyes. From the age of two, he was able to recall his telephone number and address, the birthdays of his pre-school friends, and odd and even street numbers of familiar streets in his neighbourhood. He would also recall the exact number of street-hole covers of every street in the greater Hornsby area of Sydney. He was able to recognize and write many words and numbers and could recite the twelve times tables by the age of five years. He takes great delight in building complex marble mazes, can calculate the age of a person when told their birthdate, draws complex street grids and mazes, and uses the computer independently. Both Terryâs father and grandfather are gifted in mathematics and his father is a financial planner. His mother is an editor of childrenâs literature.
The above descriptions highlight the exceptional abilities of three young children. All, however, have been diagnosed with the disability of autism spectrum disorder (ASD), a life-long neurodevelopmental disorder. At the time of this study, they attended special schools for children with autism. Patrick has a diagnosis of Autistic Disorder (severe autism), Bradley, a diagnosis of autism spectrum disorder (ASD), and Terry, a diagnosis of Aspergerâs Disorder as classified by the Diagnostic and Statistical Manual of Mental Disorders â Fourth Edition (DSM-IV). Autism is identified by two primary diagnostic characteristics or markers: difficulties in social communica-tion and restricted or repetitive behaviours and interests. Examples of difficulties in social communication include challenges in social reciprocity, non-verbal social behaviours, and establishment of relationships. Restricted and repetitive behaviours include stereotypic behaviour or speech, excessive adherence to routines and highly fixated interests. Also, co-occurring conditions, such as intellectual disability or attention deficit hyperactive disorder, may also be diagnosed alongside a diag-nosis of autism. With the recent advent of the revised Diagnostic and Statistical Manual of Mental Disorders, DSM-V (2013), there is now only one classification, termed autism spectrum disorder (ASD). The effects of ASD are present across the lifespan. Patrick suffers also from mild intellectual delay, while Bradley and Terry are performing in the average range of intellectual functioning, in spite of both displaying a wide scatter of skills. An insight into the profile of each of these children would not be complete without a brief description of their disabilities. Although the term âautism spectrum disorderâ (ASD) is the correct diagnostic classification, some people on the autism spectrum have expressed concern that the term portrays a negative perception of people with this diagnosis. With this in mind, the term âautismâ will be used in place of âautism spectrum disorderâ (ASD) in this book.
Now that we have outlined the exceptional abilities of Patrick, Bradley and Terry, we will examine more closely the impact of autism on their lives.
Unless able to obtain access to his number and reading interests, or given an instruction to finish these high-interest activities by his teacher or caregiver, Patrick will engage in a variety of challenging behaviours; biting himself or others, tantrums and running from the class or room. On occasions he has escaped from both home and school, placing himself in grave danger by running through traffic to access newspapers, car manuals, street directories and other items related to his interests. Patrick has no road-crossing or survival skills and requires constant one-to-one care and supervision by his teachers and family, when in community settings. His communication skills are severely delayed, scoring in the lowest percentile for children his age in both receptive and expressive language. His social skills are delayed and disordered, his behaviours assessed as being in the severely disturbed range, and his self-esteem is low. He currently attends an autism-specific school operated by Autism Spectrum Australia (Aspect), where the focus of his program is to improve his language, social skills and behaviour whilst teaching him functional self-help and leisure skills. He is in a class of students with moderate to severe autism and intellectual impairment, the majority of whom are non-verbal and display severe levels of challenging behaviour. His teachers and family find Patrick a very difficult child to manage and are often at a loss how to control his outbursts.
Bradley is easily stressed when he experiences difficulty with his constructions. If a piece of LEGO⢠is missing, or he has been asked to finish or move onto the next class activity, he will throw tantrums and become non-compliant. If a home or school routine is changed, he also becomes extremely anxious, crying and demanding that the routine be followed. He often needs to be distracted from his fascination with his interests to focus on other tasks. His expressive and receptive language skills are in the mildly delayed to average range, his social skills assessed as being in the moderately delayed range, and his behaviour classified as disturbed. Bradley has a moderate-to-low self-esteem. Like Patrick, he attends an autism-specific school but is in a class of students classified as high-functioning, or more able. He will soon transfer to one of Aspectâs Satellite Classes for more able students with autism located in a neighbouring government mainstream school. His educational program involves the teaching of communication and social skills, appropriate behaviours and the usual mainstream curriculum subjects. His reading, writing and number skills are at a much higher level of ability than those of his autistic classmates.
Terry experiences difficulties with his social skills and behaviour. If he does not get his own way, he will tantrum, scream, refuse to cooperate and can become aggressive. If told to stop a savant activity, he will tantrum. Terry can also be highly anxious and has difficulties changing from one environment to another. His social skills fluctuate from age-appropriate to very immature and he generally engages in solitary play. He can, however, cooperate with structured interactive group games if interested, his favourite being snakes and ladders. Terry finds it difficult to accept the opinions of others and easily becomes anxious and distressed if someone disagrees with his viewpoint. Although his behaviours were not assessed as being in the disturbed range by his family and teacher, his parents find him almost twice as difficult to manage in the home as does his teacher in the school environment. His self-esteem was rated as moderate. Terryâs current education program incorporates the teaching of communication, social, academic, appropriate behaviours and school-readiness skills. Although he is in an Early Childhood class of more able students with autism, he is performing academically well in advance of his classmates and, like Bradley, he too will soon transfer to one of the Aspect Schoolsâ Satellite Classes in a mainstream school. He is considered to be a delightful but highly anxious student.
These children are autistic savants. They are three of the twenty-two children who were subjects of this study, between four and sixteen years of age, diagnosed with autism spectrum disorder (ASD), and who display a variety of savant and/or splinter skills. They all display high-level skills in association with either a low IQ, or delayed levels of developmental functioning (Goodman, 1972). Although the term âidiot savantâ was originally used to describe persons with an intellectual disability who displayed special skills or gifts, it would appear that at least half of all savants are in fact autistic (Hill, 1978; OâConnor and Hermelin, 1987; Treffert, 2012). Savant refers to âa learned or knowledgeable personâ, whereas âidiotâ referred to a person with an IQ âbelow 25â. Treffert (1989), the worldâs leading authority on savants, defined the phenomenon as savant syndrome. In his widely accepted definition, he classified the skills of savants as either Savant I or Savant II skills; exceptional or with spectacular islands of ability or brilliance which stand in contrast to the disability (Talented Savant I); or spectacular even if viewed in contrast to the non-disabled person (Prodigious Savant II).
âSavant syndromeâ is an exceedingly rare condition in which persons with serious mental handicaps, either from developmental disability (mental retardation) or major mental illness (early Infantile Autism or schizophrenia), have spectacular islands of ability or brilliance which stand in stark, markedly incongruous contrast to the handicap. In some, savant skills are remarkable simply in contrast to the handicap (Talented Savants or Savant I). In others, with a much rarer form of the condition, the ability or brilliance is not only spectacular in contrast to the handicap, but would be spectacular even if viewed in a normal person (Prodigious Savants, or Savant II).
(Treffert, 1989, p. xxv)
Although it was originally thought that all savants have a low IQ, it should be noted that individuals with savant abilities have been identified across all levels of intellectual ability (Treffert, 1989). There are a number of reports in the literature of individuals with autism who are considered to be autistic savants despite average or above-average intellectual functioning (Hermelin, Pring and Heavy, 1994; Young and Nettlebeck, 1995). Having had the privilege of teaching several high-functioning students with autism, who also displayed savant skills, I confirm this to be the case.
Patrick, Bradley and Terry display these exceptional or spectacular savant abilities as defined by Treffert (1989). They have multiple savant skills, which may be found amongst Hillâs (1974) list of savant abilities: memory, art, music, mechanical, calendar, calculation, arithmetic calculation, athletic skill, sensory sensitivity and hyperlexic skills (the ability to read, write and spell). All have savant memory ability and their level of savant abilities include both Savant I (Talented) and Savant II (Prodigious) skills. Although not included in Treffertâs definition of savant syndrome, splinter skills are relatively common in children with autism, and are emerging or partially developed savant skills. In my view, they warrant classification as a Savant I (Talented ability) (Clark, 2001). All three children are highly motivated by their savant interests to the point of obsession, spending many hours each day focused on their activities, to the exclusion of teachers and families. They are what I refer to as the âparadox childrenâ, as they display high-level skills or gifts alongside their diagnosed disability of autism.
These students are both gifted and disabled. The term âtwice-exceptionalâ is now being used to describe students who are gifted and also have a disability (Betts and Neihart, 2010; Assouline and Whiteman, 2011). In their profiles of the gifted and talented student (2010), Betts and Neihart use the term âtwice/multi-exceptionalâ to describe the profiles and the educational supports required for this emerging new group of gifted disabled students.
It should be highlighted that although the autistic savant comes under the umbrella label of the âtwice-exceptionalâ learner with autism, they are a subset of this group. Not all gifted learners with autism are savants, and not all savants are high intellectual performers. For the classification of a student as being an autistic savant, they must have first been diagnosed as having an autism spectrum disorder (DSM-IV/V), and exhibit one or multiple savant skills (Hill, 1974; Rimland, 1978; Miller, 1998), which also stand in contrast to their disability as defined by Treffert (1989). For a student to be assessed as being a âtwice-exceptionalâ learner, they need to be identified as gifted, or talented in one or more areas whilst also possessing a learning, emotional, physical, sensory and/or developmental disability (Yewchuk and Lupart, 1988, cited in Assouline et al., 2006, p. 14).
The challenge of developing savant skills into productive talents
We now know that there are many more autistic savants in the overall autistic population than were first thought. A study by Patricia Howlin and colleagues in 2009 puts the rate of savant skills in adults with autism close to 30 per cent, rather than the 9.8 per cent we believed to be the case based upon the founding work of Rimland (1978). Along with the realization of the larger numbers of autistic savants in the autistic population comes the associated world-wide reports of the increase in the prevalence of those with autism. Recent research is pointing to prevalence rates of between 1 in 50, and 1 in 88, children (Blumberg et al., 2013). With the increasing numbers of children and adults being diagnosed with autism is the urgent need to provide more evidence-based interventions, services and supports that will truly make a difference in the lives of these disabled people. A new attitude to the understanding, research and care of those with autism is now emerging.
Post-school life and employment outcomes for people with autism are often poor. Research into the outcomes for adults on the autism spectrum universally show poor employment, social and life outcomes (Howlin et al., 2004; Cimera and Cowan, 2009; Taylor and Seltzer, 2011; Howlin and Moss, 2012; Baldwin, Costley and Warren, 2014; ). The results of the most recent study in the US, the National Autism Indicators Report: Transition into Young Adulthood (Roux et al., 2015), ...
