21 The concept of ASD occurring on a spectrum is highly evident in these variances of communicative abilities as well as variations in social understanding and functioning, as a child with ASD may have any number of combinations of the above-mentioned deficits.
2.1.2 Repetitive and characteristic behaviours
Children with ASD may present with repetitive movements and unusual behaviour that can be disruptive. These include “flapping” (flapping their arms), rocking from side to side, or spinning. Some children engage in behaviours that may be self-injurious or difficult to stop.
They may become preoccupied with parts of objects like the wheels on a toy truck. Individuals with ASD may become preoccupied or obsessed with unusual topics or parts of objects.
This rigidity of thought or ‘repetitiveness’ is also seen in the ASD individuals need for routine and familiarity. Many individuals with ASD have great difficulty coping with change or spontaneous activities as they tend to thrive with clear, set routines and daily patterns. Changes to this daily pattern or unexpected deviations can be extremely challenging and may result in emotional outbursts in response.
These are considered the “core” characteristics of ASD however there are a number of other behavioural and emotional difficulties that may present themselves as well as deficits in cognitive ability.
22
Figure 2.1 Showing factors making ASD a unique disorder
2.2.1 ASD: Spectrum heterogeneity
ASD presents on a spectrum with variations in behavioural phenotypes within each domain and the type and severity of the deviations that manifest. Clinically, ASD is considered to be highly heterogeneous (Hayes & Watson, 2013; Lenroot & Yeung, 2013). This means that each individual case presents with different characteristics and clinically varied presentations.
Therefore, one individual may not necessarily meet the diagnostic criteria or be impaired in the exact same way as another individual with ASD.
2.2.2 ASD: Deviation from typical development
In comparison to other developmental disorders such as developmental intellectual impairment, ASD manifests itself in prominent divergences in development rather than developmental delays alone (Beauchesne & Kelley, 2004). Therefore, the understandings gained from the study of non-ASD developmental disorders may have limited generalisability to ASD. In turn, presenting a unique plethora of deficits and characteristics for clinicians and families to navigate. In comparison, children with ASD tend to on average, present with greater levels of behavioural problems than those with other developmental delays (Estes et al., 2009;
Xu, Neece, & Parker, 2014).
2.2.3 ASD: Common co-morbidities and secondary diagnoses
The combination of various co-morbidities commonly present in individuals with ASD further expands this variability, making providing care challenging and rendering experiences across families highly variable (DePape & Lindsay, 2015). As discussed above, ASD often presents
ASD occurs on a spectrum
ASD is considered to be highly heterogeneous (Hayes & Watson,
2013; Lenroot & Yeung, 2013).
Co-morbidities and secondary diagnoses are often
present.
Medical complications/
physical or health issues are common.
ASD characteristics conceptualised as significant deviations from typical development (Beauchesne &
Kelley, 2004).
ASD is associated with pervasive and
lifelong impairments with
no cure.
Treatments and interventions aim to improve rather
than ‘cure’.
23 with co-morbid diagnoses which impact presentation. According to Simonoff et al. (2008), a population-based study found that seventy percent of participants diagnosed with ASD also met the criteria for at least one other co-morbid disorder.
Many children with ASD also present with co-morbid intellectual disabilities (Baker, Neece, Fenning, Crnic, & Blacher, 2010; Borthwick-Duffy & Eyman, 1990; Neece, Baker, Blacher,
& Crnic, 2011; Neece, Green, & Baker, 2012). Other than intellectual disability, the most commonly reported co-morbid diagnoses include ‘anxiety, attention-deficit/ hyperactivity disorder (ADHD), depression, obsessive compulsive disorder (OCD) and oppositional defiance disorder (ODD)’ (Kim et al., 2000; Mayes et al., 2011; Simonoff et al., 2008). Each of which are associated with their own behavioural and functional impairments.
2.2.4 ASD: Secondary medical complications/physical and health states
Many individuals with ASD present with medical issues as secondary diagnoses or at times consequences of behavioural problems (e.g. banging head or ears). A number of health issues such as epilepsy, tuberous sclerosis, and seizures may co-occur with ASD (Boisjoli & Matson, 2009; Gillberg & Billstedt, 2000; Xu, Neece, & Parker, 2014). Gastrointestinal complications and poor sleep are also common.
2.2.5 ASD: Pervasive and long-term impairment/s
Many individuals with ASD present with cognitive and/or adaptive impairments that hinder their ability to live self-reliantly thus resulting in a need for continued care from caregivers for the duration of their lives (Volkmar & Pauls, 2003, cited in Karst & Van Hecke, 2012).
Regardless of level of intellectual impairment, ASD is pervasive and persists across the individual’s lifespan (DePape & Lindsay, 2015). According to Abbott, Bernard and Forge (2012), a diagnosis of ASD is associated with a lifetime impact on the family as well as the child. This lifelong burden placed on parents and siblings of children with ASD may exacerbate the difficulties faced by the family, alter their perception of parenting, and likely impact positivity about their future- as individuals and as a family (Karst & Van Hecke, 2012).
2.2.6 ASD: Treatments aim to improve rather than ‘cure’
As there is no known cure for ASD, treatments and intervention objectives focus on the improvement of the child’s functioning (Woodgate, Ateah, & Secco, 2008).
24 Targets of interventions include developing social, communication, adaptive, behavioural, and academic skills as well as decreasing maladaptive and repetitive behaviours (Committee on Children with Disabilities, 2001, cited in Woodgate et al., 2008). A combination of strategies is required in order to attempt to address the diverse range of deficits that may be present (Woodgate et al., 2008).
The intra-variability and inter-variability of effectiveness of treatment means that therapies that are highly effective in one instance may not work in others. Furthermore, interventions that work initially may begin to decrease in effectiveness over time or at a later stage in development. Due to this, and the heterogeneity of ASD, interventions and treatments tend to be highly individualised and expensive.
With improvement in functioning as the goal of interventions alongside the high variance in presentation amongst individuals with ASD, there is a vast array of intervention and treatment possibilities (Karst & Van Hecke, 2012). The numerous debates surrounding ASD further complicate this picture- leaving parents with a massive amount of possibilities to comb through and decipher- often without sufficient guidance from health care professionals (Karst & Van Hecke, 2012; Woodgate et al., 2008). Individuals with ASD and their families encounter numerous professionals beginning prior to diagnosis and throughout their lifespan, ranging from general practitioners and paediatricians to clinical psychologists, occupational therapists, speech therapists and educators. Some studies suggest that prior to receiving a formal diagnosis, an average of four and a half practitioners are seen however in South Africa, Mitchell and Holdt (2014) found that the number of practitioners seen ranged from six to eleven.
There are a multitude of interventions available for children with ASD, with new ones emerging daily however, very few meet the requirements of ‘evidence based standards’- especially within lower income countries.
Interventions are demanding on parents as they attempt to attend a multitude of therapies while trying to cope with the daily demands of caring for their child with ASD. Interventions that rely on parents- often as key therapist- have gradually gained momentum. The focus of clinical attention is the child whereas not much attention may be given to the parent/s regarding their need for psychosocial support.
This clinical heterogeneity results in variations in diagnostic processes, treatment protocols and requirements however it also inherently results in dissimilarities in the experiences of each
25 family. This is essential to consider when attempting to provide support and intervention for the family of a child with ASD.