Part One: Understanding
Autism â Autism Spectrum
Characterisitics and
Cognitive Patterns CHAPTER 1
Autism: An Overview
The intent of this chapter is to provide therapists with basic information regarding autism. It is beyond the scope of this chapter to provide a complete understanding of autism. In fact, in order to understand the autism spectrum the reader should go to a variety of sources. A good understanding can be gained from reading first-hand accounts of autism (see Grandin 1996; Willey 1999). There are also excellent resources that provide detailed overviews of autism, pervasive developmental disorder, not otherwise specified (PDD-NOS), and Aspergerâs syndrome (AS) (Aston 2003; Attwood 1998; Jacobsen 2004; Janzen 1996; Quill 1995). This writer will attempt to provide some history of the psychological theoretical underpinnings of autism, a basic understanding of the aetiology of autism, and the characteristics of autism spectrum disorders (ASD).
HISTORY OF AUTISM AND THEORETICAL PARADIGMS
It is sometimes helpful to know the history of autism and the theory behind it in order to gain an understanding of some of the myths and perceptions that have come to us in this millennium. Autism and Aspergerâs syndrome were both described within a year of each other. Leo Kanner first described autism in 1943 (Fombonne 2003; Janzen 1996) at about the same time as Hans Asperger (in 1944) described the syndrome to be named after him (Attwood 1998; Perlman 2000). The word âautismâ was initially used by Bleuler to describe the onset of schizophrenia, and contributed to the confusion between childhood schizophrenia and autism (Fombonne 2003). Aspergerâs work went largely unnoticed until Wing published a paper based on 34 cases in 1981 (Perlman 2000).
Psychoanalysis of autism: refrigerator mothers and ambivalent attachments
Treatment in the early 1950s and 1960s evolved from the notable difficulties that children who had autism experienced with social attachment and emotions. Post-World War II child psychiatry attributed autism to attachment disorders in the mother and child relationships (Fombonne 2003), or by exposure to environments that were lacking in emotional warmth and enjoyment (Jacobsen 2003; Koegal, Koegal and McNerney 2001). This created a professional perception of autism as being caused by poor mothering, which may still be held today despite medical advances that clearly indicate a primarily genetic aetiology (Fombonne 2003; Smith 1996). Psychodynamic theories of autism became prevalent during this time (Koegal et al. 2001), led by the work of Bettelheim (Quill 1995).
Bettelheim perceived autism as being a disorder caused by ârefrigerator mothersâ (Fombonne 2003, p.503) who were unable to form emotional bonds with their children. Autism was seen to be caused by parental rejection, specifically the childâs emotional withdrawal and reaction to the parentsâ lack of emotional attachment. In 1963 Bettelheim as quoted in Henley (2001) stated:
What is the difference, then, between separation anxiety â which is manâs basic anxiety â and the anxiety that leads to autistic withdrawal? I believe it is the infantâs correct reading of the motherâs emotions when she reappears: that the reunion is unwelcome to her: that she would rather it didnât happen. This is when separation anxiety turns to the certainty that oneâs nonexistence is wished for. With it, every separation becomes an experience of possible desertion and hence annihilation, a fate that only desperate measures may possibly ward off. (Henley 2001, p.223)
This initial professional perspective of parents of children who are on the autism spectrum as being loveless, cold, and unwelcoming to their child is considered erroneous at present (Quill 1995). This misperception was believed until fairly recently. This writer believes it is important for a counsellor working in the field of autism to be aware that some of the messages provided by physicians, and perhaps other professionals, may still be based on the old paradigm of poor mothering. This psychoanalytical perception of autism as an attachment disorder and anxiety over annihilation continues to this day, and is one framework of modern psychoanalysis of autism (Alvarez 1992; Henley 2001; Jacobsen 2004; Maiello 2001; Prado de Oliveira 1999).
Psychoanalysis is well represented as a counselling approach for autism, although it has been used with persons on the spectrum with limited success (Henley 2001). However, there is some discussion that indicates that psychoanalysis of children on the autism spectrum is harmful (Gerland 1999; Sainsbury and Gerland 1999; Smith 1996). Psychoanalysis today continues to have a dim view of the biological aetiology of autism, preferring to look for answers in family psychodynamics and personal or family trauma (Maiello 2001; Prado de Oliveira 1999).
Treatment for these children was aimed primarily at emotional recovery and addressing attachment issues and parental trauma factors (Henley 2001). However, psychoanalytical treatments did not show dramatic recovery from autism, or good results (Ghaziuddin, Ghaziuddin and Greden 2002), as treatment length could range from one and a half years to about twenty (Alvarez 1992). Therapists began to search for more effective ways to treat autism that would show results more rapidly. In light of this, behaviour therapies were explored (Quill 1995).
Behavioural interventions and autism
Behaviour therapies have been shown to be very effective in teaching new skills and behaviours for people on the autism spectrum and are the most common treatment. Behavioural interventions are used to address the core areas of autism and to teach new skills (Fombonne 2003; Green 1996; Janzen 1996; Rogers 1998a; Smith 1996). Behavioural approaches are very effective in the areas of skill development and behavioural change, but address only the symptoms of autism, and not the core deficits. However, behaviour change and adaptive skill development are key areas to improve the quality of life of both children and adults on the autism spectrum.
There is little doubt that behavioural interventions are effective (Green 1996; Rogers 1998a, 1998b). The main issues with behavioural technologies are that they are powerful tools of compliance (Lovett 1997) and have sometimes been described as an approach that treats the symptom and not the person. Cognitive and emotional issues that may be âdriving the behaviourâ (Renna 2004, p.18) are seldom addressed by behavioural interventions.
Aspects of thinking and feeling were often left unexplored, despite the fact that people with autism spectrum disorders have difficulties with understanding their environment and with emotional regulation. Understanding the reasoning or purpose behind a behavioural request may be left unexplored, or may be meaningless to someone with ASD. Thus, the request generates confusion. Why would someone do a meaningless thing? Enhancing meaning and understanding combined with behavioural change forms the basis of the cognitive behavioural approach. Attribution of meaning to a situation will affect behaviour (Attwood 1998).
Behavioural approaches may prove to be ineffective with some of the higher functioning people with ASD, as antecedent and consequence management may not address the ASD individualâs perception or interpretation of the situation. For many high functioning people, reinforcement and consequence driven behavioural approaches will be resisted as they may perceive the treatment âas being forced on themâ (Heflin and Simpson 1998, p.200). However, once a practical understanding is reached regarding the reason for change, people on the autism spectrum are often more amenable if the meaning makes sense to them, and they can see the utility of changing their behaviour (Aston 2003).
Aetiology
The aetiology of autism is complex. There are genetic factors that appear to cause autism, and environmental insults that can also lead to autism. For a small percentage of people, no cause has been identified (Rutter 2005). Autism is usually diagnosed during childhood, although it is not uncommon for people who have high functioning autism (HFA) or Aspergerâs syndrome to be diagnosed later in life (Aston 2003; Attwood 1998; Janzen 1996).
Non-genetic factors
Several non-genetic factors appear to play a role in the aetiology of autism, including the use of prescribed drugs such as thalidomide or valproic acid use during pregnancy. Recreational drug or alcohol use during pregnancy seems to enhance the risk of the fetus developing autism. Also, there seems to be an established link between congenital rubella and autism. Research has not proved that thermisol, a mercury-based component of the measles, mumps, and rubella (MMR) vaccination, leads to autism, despite the controversy, although there is some speculation that children who become autistic after the MMR vaccine may be more sensitive to toxins such as mercury. To date, however, no conclusive link has been found (Rutter 2005).
Genetic inheritance
Twin studies have shown a rate of 60 per cent of twins both having autism when the twins are identical. This is compared to a 5 per cent rate of fraternal twins. When examining identical twins where only one has autism, the rate of the other twin being somewhere on the milder side of the spectrum is much higher than the rate of fraternal twins, showing strong heritability: âTaken together with the population base rate for autism, this implies that the heritability or underlying genetic liability is about 90% â the highest figure among all multifactorial child psychiatric disordersâ (Rutter 2005, p.232). Families with one member diagnosed on the autism spectrum report a 6 per cent rate of autism, much higher than the 0.5 per cent rate in the general population. There are between 3 and 12 susceptibility genes for autism that act in a synergistic manner that produces the variation of the autism spectrum (Rutter 2005).
Neurological differences
The ability of modern technology to unlock the mysteries of the brain has shown that there are several differences in the brains of those who are on the autism spectrum, as compared with those who are normal. Magnetic resonance imaging (MRI) studies indicate that people with autism tend to have larger brains overall, larger cerebellar hemispheres, parietotemporal lobes, and amygdala, with a reduced corpus callosum (Brambilla et al. 2003). The limbic system, the seat of emotion, is reported to be impaired (Rogers 1998b).
People on the autism spectrum do not use the fusiform face gyrus, the area of the brain that is associated with facial recognition, when looking at and identifying faces (Schultz 2005). Schultz suspects that the differences in facial processing may explain the difficulties in recognizing facial emotions. It may also explain why people on the autism spectrum may not acknowledge friends and acquaintances when they pass them on the street or in the hall.
Cerebellum abnormalities are suspected as contributors to the behavioural and cognitive phenotype of autism. The cerebellum is crucial in learning motor sequencing and adaptation learning, and may explain why people on the autism spectrum do not accommodate well to change (Mostofsky, Goldberg, Landa and Denckla 2000).
There appears to be a hemisphere reversal of the brain areas that are involved in language listening, from the normal left hemisphere to the right hemisphere in autism. Left dominance for language is found in less than 5 per cent of right-handed individuals with autism, and in more than 95 per cent of right-handed people who are not on the autism spectrum (Muller et al. 1999). As Euro-American educational systems highly value verbal learning, people on the autism spectrum who have clear brain abnormalities regarding language are at a disadvantage.
Nonverbal auditory patterns are also unusual, with reduced bilateral superior temporal and cerebellar activities, and unusual activation of the left anterior cyngulate gyrus. This demonstrates that the difficulty with interpreting nonverbal communication lies in the difference in brain physiology. The anterior cingulated gyrus is normally implicated in cognitive-attentional and emotional functions, and could be related to auditory hypersensitivity found in autism (Muller et al. 1999).
MĂźller, Cauich, Rubio, Mizuno and Courchesne (2004) reported abnormal motor organization, with diffuse cerebral activation, instead of the more focused normal activation in the ipsilateral anterior cerebellum. Activation patterns for simple motor patterns showed a higher scatter than that found in the control sample. People on the autism spectrum often have difficulty with motor planning, which can be attributed to these differences.
People who have autism tend towards having higher brain volume than that of the normal population. This increase is not present at birth, but brain volume increases after the age of two. This suggests that the normal neural pruning which occurs during childhood does not occur in the usual fashion for those who are on the autism spectrum. In contrast, the corpus callosum, which is the brain structure that provides the communication pathway between the two hemispheres, specifically the posterior midsagittal corpus callosum, appears smaller, suggesting that information may not travel between hemispheres as rapidly as in the normal population (Palmen and van Engeland 2004).
Prevalence
The rate of schoolchildren diagnosed with autism has increased exponentially. In the 1970s the rate of autism was less than 3 in 10,000 children, while in the 1990s the rate was about 30 in 10,000 (Blaxil 2005). The incidence of the larger autism spectrum disorders are between 30 and 60 cases per 10,000 (Rutter 2005), making autism spectrum disorders âmore prevalent in the pediatric population than cancer, diabetes, spina bifida, and Downâs syndromeâ (Filipek et al. 1999, p.440). This increase is accounted for by actual increase in numbers, as well as better diagnostic tools and wider diagnostic criteria, encompassing the range of the autism spectrum (Samuels 2005). There is a prevalence of males to females of 3:1, with mental retardation occurring in about 80 per cent of the cases (Fombonne 1999). About one in five first-degree relatives have a much milder variant of autism. Autism appears to affect all social classes and ethnicities equally (Rutter 2005).
Lifespan and adult outcomes
There is agreement that people do not âgrow out of their autismâ (Ruble and Dalrymple 1996), and social deficits tend to persist. General consensus is that outcome is poor, as the core deficits of autism do not go away with age (Howlin 2000), although they will improve (Seltzer, Shattuck, Abbeduto and Greenberg 2004). Often supports are pulled away when a person appears to be doing well. Failure to continue to do well is frequently the result. There is a delicate balance between support needs and community success. Part of the support needed is consistency and familiarity in day-to-day life (Ruble and Dalrymple 1996).
Be...