Thursday, 20 March 2014

What you need to know about Autism: An Essay


Such a colourful world
[http://www.health.am/psy/more/kids-with-autism-often-get/]

There is no question as to whether Autism Spectrum Disorders (ASD) cause stress within the family unit[1]. Studies have shown that families with a child (or children) with an ASD report increased vulnerability to depression, loneliness, psychological stress and cognitive impairment in mothers (Bromley, Hare, Davison & Emerson, 2004; Kapp & Brown, 2011; Koegel et al., 1992). Social isolation and anxiety in both parents and children (Guralnick, 2000); lower financial status and quality of life (Ghanizadeh, Alishahi & Ashkni, 2009; Sipos, Predescu, Muresan & Iftene, 2012); sleep problems in both parents and children (Australian Psychological Society [APS], 2012; Mayes & Calhoun, 2009); and escaping and distancing behaviours in parents (Sivberg, 2002) are also reported.

Coping styles among parents that contribute to the way stressors are handled in both positive and negative ways have also been explored among researchers. For example, Kapp and Brown (2011) identified several strategies that helped parents deal positively with stressors. These include: The introduction of practical routines for both the child dealing with an ASD and other family members; attendance in recreational activities; maintenance of internal control in parents in order to perceive the situation as controllable; and gaining knowledge about the disorder. Both, stressors involved with caring for a child with autism, and parental coping tactics contribute to the treatment methods selected, as well as the parent’s satisfaction with the treatment and progress of the child.

The aim of this essay is to discuss a number of challenges evident in everyday life of families with a child suffering from autism. Of special focus shall be the source and access to relevant information available to parents; and the lack of funding for effective initiatives that assist parents, and how the latter affects the choice of treatment. It is important to stress that these challenges shall be investigated in light of the implications they have with regards to the choice of empirically based and non-empirically supported therapies – a very important dichotomy where therapy is concerned.

Psychiatric Symptomatology

The American Psychiatric Association (APA, 2007) describes ASDs as pervasive developmental disorders categorized in terms of Autistic Disorder, Rett’s Syndrome, Asperger’s Disorder, Pervasive Developmental Disorder Not Otherwise Specified, and Childhood Disintegrative Disorder. However, for the purposes of this essay, ASDs shall only be referred to with reference to autistic disorder.[2]
        
    The Diagnostic and Statistical Manual of Mental Disorders (at the time of this writing [mid-2012] in its fourth revised edition; DSM-IV-TR) describes the symptoms of ASD as follows: impairment in social communication (both verbal [e.g. delay in the onset of speech, and when speech is present it is not always comprehensible] and nonverbal [e.g. gestures]) and interaction (e.g. lack of development of interpersonal relationships); lack of shared enjoyment (e.g. interests and achievements) with others; lack of emotional expression; lack of imaginative play; preoccupation with unimportant objects (e.g. rocks); adherence to routines and rituals (e.g. lining up rocks in a certain order); repetitive motor mannerisms (e.g. waving arm around for an extended period of time); and a restricted range of interests (APA, 2000). Disturbance is marked in language used in social communication, social interaction, and imaginative play. Importantly, these symptoms must manifest themselves before the age of three years, and are not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder.

Epidemiology

The DSM reports the prevalence of autism to be between two to 20 cases per 10,000 individuals (APA, 2000); others report between 30 and 70 cases per 10,000 (Fombonne, 2005 as cited in Butcher, Mineka & Hooley, 2012; Woolfenden, Sarkozy, Ridley & Williams, 2012). The Australian Psychological Society (APS; 2012) reports a diagnosis of one in 160 children with the boy/girl ratio of 4:1. The APS’s approximation is in line with other research (Ghanizadeh et al., 2009; Glazzard & Overall, 2012; Sipos et al., 2012), and can be regarded as a fairly accurate prevalence for those suffering with autism.

Aetiology

Although there is no known cause of autism, a number of researchers have made inferences as to various risk factors and biological characteristics inherent with the disorder. For example, the DSM-IV-TR notes that there is a five percent chance of siblings having the disorder compared with only 0.05 percent in the general population (APA, 2000). Butcher et al. (2012) note that there is a general consensus among investigators that autism originates prenatally with impairment in perceptual-cognitive functioning. Girgis et al. (2007) found that autistic patients had decreased volume of gray matter in the orbifrontal cortex, suggesting disturbances in central nervous system functioning. Other factors are related to neurotransmission (e.g. elevated serotonin and dopamine levels; Sue, Sue & Sue, 2006), genetic predispositions that interact with environmental stressors in order to bring about an increased proclivity to the disorder (Sue et al.), birth complications (Comer, 2004), and organic damage (Durand & Barlow, 2003). Although no one of these factors alone is explicitly responsible for the causation of autism, they may play a vital role. Research is constantly undertaken and revised; therefore there is hope that in the future, aetiology shall be determined.

Is it difficult to take children with autism spectrum disorder to a family restaurant?
[http://www.sheknows.com/parenting/articles/804475/taking-your-autistic-child-to-a-restaurant-tips-on-dining-out-for-families-living-with-autism]

The Challenges of ASD on Parents

Kanner (1943) documented 11 cases of children that had autistic disturbances in affective contact. He was the first to recognize a unique set of symptoms (previously outlined) among children that had manifested in their behaviour. Kanner was the first to speak about autism as a distinct developmental disorder, and since his time there has been a vested interest among researchers to understand the etiology of the disorder and the way it affects both the diagnosed child as well as the family unit. There are a variety of challenges that present themselves within the family unit and each challenge implicates choice of treatment of the disorder, and ultimately the effectiveness of the treatment itself. Guralnick (2000) lists four categories of stressors that are present in families dealing with autistic children. These stressors are the source and access to information about autism and relevant treatments; stigma and interpersonal distress associated with ASDs; stress on resources; and the parenting style of children affected with autism (this stressor can be seen as a culmination of the three previous classes of stressors). What follows is a discussion of two of the most focused on challenges to the treatment of autism: The source and access to empirically based information for treatment of ASD; and the financial burden on family resources and how this affects treatment.

Source and Access to Information and Treatment
    
        According to Eikeseth (2001), in order for professionals and parents of those affected by autism to make informed decisions about the available treatment methods, these decisions must be founded by empirical evidence. Guralnick (2000) concurs, stating that in order to “fix” stressors associated with ASD and help children developmentally, an increase in relevant information is paramount. However, it has been found that in many cases evidence-based treatment is not the initial choice for many parents. Recent literature has elucidated the fact that parents are bombarded with the opinions of professionals and those of other parents suggesting which treatment is best for their child – what’s worse is that many of these treatments are regarded as pseudoscientific rather than backed by empirical support (Green, 2007; Green et al., 2006; Guralnick, 2000; Mackintosh, Goin-Kochel & Myers, 2012; Miller, Schreck, Mulick & Butter, 2012; Smith, 2005; Webster, Feiler, Webster & Lovell, 2004).

Supported and Unsupported Methods of Treatment
    
        The parent’s concern for their autistic child which ultimately leads them to pursue an effective treatment is understandable; however the reason the aforementioned “information bombardment” can be considered a challenge to treatment is precisely due to the fact that various methods of treatment simply will not work. Green et al. (2006) found that within their experimental sample, parents were using up to seven treatments at one time, and most of these treatments lacked empirical support. Treatments referred to parents ranged from professionals such as psychologists, behaviour analysts, occupational, speech, and physical therapists, medical doctors, audiologists, educators, and dieticians (Miller et al., 2012). Among these professionals it was the physical, occupational, and speech therapists that were most likely to recommend therapy lacking empirical support, with behavioural analysts and psychologists most likely to recommend research-based therapy (Miller et al.).
       
        One of the reasons parents tend to lean toward unsupported methods such as megavitamin, speech, music, and relationship therapy, sensory integration, diets, and computer-software packages is that they are an “easier” method, and less labour and cost intensive than methods such as Applied Behavioural Analysis (ABA; which teaches children how to communicate, engage in activities, and take care of themselves), and medications (such as antidepressants, antipsychotics, and stimulants; Butcher et al., 2012; Green, 2007; Smith, 2005). For example, ABA requires 40 hours of intense treatment for up to two years; and with medications, though they tend to alleviate various unwanted symptoms such as aggression, commitment to routines and sleep problems, they usually carry a number of side effects (such as restlessness and headaches; Smith, 2005).

            Smith (2005) found that parents might be swayed into the decision of pseudoscientific therapy due to such methods’ claims for a “cure”. While ABA and some medications propose an incremental increase in positive behaviours and decrease in negative behaviours, methods such as those previously listed as unscientific strive for something more. This is where their appeal is, notes Smith, however unsupported methods forget that as there is no known cause of ASD, and without a known cause, how can one propose a cure? Ultimately, such claims are unjustified as well as unethical (Lovaas, 2000 as cited in Tews, 2007). These methods may also point out difficulties in supported treatments such as that ABA may not generalize to everyday settings, but generally works in clinical settings, and that medications carry with them a variety of side effects such as nausea, restlessness, tremors, and headaches (Smith, 2005). Therefore, in order to bypass these negative effects, the parent may insist on a treatment such a vitamin therapy.

            Also important is that, as previously noted, friends of the parents of the autistic child – who usually also have a child with autism – profoundly impact the parents perception of which treatment may or may not work (Green, 2007). Miller et al. (2012) reported that the most influential method among parents when choosing treatment options were word-of-mouth from both professionals (e.g. psychologists) and non-professionals (e.g. other parents). Mackintosh (2012) found that within their sample, 72% of parents went from the advice of other parents when deciding which method would be best for their child. Hall and Graff (2010) found that other parents saw themselves as experts and occasionally advocated for parents that had less information about the disorder, thereby influencing many aspects of the therapeutic process. Interesting are Green’s findings that regardless of the lack of empirical data of some treatments that are chosen in response to recommendations of others, parents may report on positive outcomes of these approaches when their expectations of success are high – a phenomenon known as the placebo effect. In other words, unjustified recommendations for specific treatments are passed on from parent to parent because of the expectancy that it works even though there is no evidence that it does.

            Therefore, as the source of information (e.g. recommendations from a psychologist as opposed to a occupational therapist), and the access to empirical methods of treatment are vital to treatment, it is important for parents to be better informed of their choices. The prognosis of the child is at stake, and if unsupported methods are constantly chosen, preferential progress is not achieved.

Lack of Funding and Implications for Treatment Information

            One final challenge for the family unit when faced with raising a child with autism, are the burdens on resources involved. The costs attributed to therapeutic methods for both the parent and the child limits the psychological and developmental progress of both. That is, stressors are observed in the family unit, and therefore therapy is not only beneficial for the child suffering with autism, but also for the parent in coping (Kapp & Brown, 2011). For the effects of treatment to be most profound one would assume that parental mental health should be at an optimal level. If parents were increasingly stressed, then this would adversely affect the quality of treatment, as well as the observed prognosis of the patient (Bromley, et al., 2004). Tonge et al. (2006) observed that when a counselling program was in effect, parents of children with autism benefitted in terms of mental health and wellbeing. This observation is in line with Kapp and Brown’s (2011) findings that when parents were in charge of their emotions and maintained internal control when faced with stress, they were able to function more effectively, and optimal functioning influenced the way the child developed and responded to various treatment methods. Similarly, Guralnick (2000) found that when parents maintained positive transactions with their child regardless of stressors, the parent’s confidence grew and in turn provided an ideal environment for improvement.

            However, although there are prescribed benefits to the development and response to therapy for children when parents adapt to the situation and are internally controlled, these benefits can only be experienced when appropriate initiatives are in place. In other words, if various initiatives that benefit parents in coping are not funded by an external source, then the mental health of the parents would be affected, and this in turn would affect the development of the affected child (Guralnick, 2000; Kapp & Brown). Alternatively, not only important is the problem of funding with regards to parents mental health, but also the engagement in early intervention initiatives for children.[3]

            Dissanayake (2012) argues that early identification, diagnosis and intervention promote better long term effects for children suffering with autism – an understanding congruent with the findings of other researchers (Eikeseth, Klintwall, Jahr & Karlsson, 2012; Green, 2007; Guralnick, 2000; Kovshoff, Hastings & Remington, 2012; Marquez-Caraveo & Albores-Gallo, 2011; Matson & Tureck, 2012; Webster, et al., 2004). However, early intervention[4] is not always achieved, as the majority of diagnoses occur at the age of approximately four years (Dissanayake, 2012). Dissanayake argues that in order to get the best results, funding is needed in order to aid early diagnosis, and therefore earlier treatment (APS, 2012). Although this may be viewed as an external problem rather than one that presents significant challenges for the family, the two are interrelated. That is, if an external source does not initiate funding for an early diagnosis, then financial pressures are on the family as they receive a later diagnosis and pursue other methods of treatment that may adversely affect their child. The latter is in accordance with Glazzard and Overall’s (2012) findings that parents of children with autism receive less financial support than that of parents of children with Down syndrome and other disorders; parents are left “on their own”, and this in turn leads to increased vulnerability to psychopathology.

            However, although Dissanayake argues from an Australian context, the Australian Government has an initiative in place (which began in 2008) entitled Helping Children With Autism (HCWA). This initiative has been used widely across the country, and aims to put strategies in place for early intervention, as well as provide support for family members. It has yielded good results with four of every five affected children showing a marked improvement in communication skills, social skills, behaviour and transition to school (ARTD Consultants, 2012) – however, the initiative does have a few drawbacks. One of these drawbacks is that children in remote areas, and children from culturally and linguistically diverse backgrounds, as well as Indigenous Australians seem to be underrepresented in the client-base (ARTD Consultants; Wilson & Watson, 2011). Another more important drawback however is that this initiative does not do enough to facilitate earlier intervention. Dissanayake (2012) stresses that earlier diagnosis aids to protect from emotional and financial stress for families, and in turn provides better long-term outcomes. When families have access to early intervention before the age of three years (as opposed to the current diagnosis of four years), there is less stress on the parents as well as the child – therefore, funding (as Dissanayake argues) is paramount for the earlier diagnosis of autism.
Image retrieved from:
[http://www.tomatis.com.au/autism.php]

Summary and Implications

            The aim of this essay was to identify various challenges that present significant implications for treatment of ASDs. ASDs were referred to in terms of autism, and the diagnostic symptomatology was identified, including the epidemiology. Of vital focus in terms of challenges inherent in families of children with autism was the access and source of information available to parents of children with autism. Also discussed was the problem of funding initiatives for families and how this implicates treatment and early intervention. These were identified as challenges to the family unit as they stood in the way of either early diagnosis of the disorder and/or access to empirically based treatment options.

            Where children lack opportunities for early diagnosis, this in turn creates stress on the parents, as they have to wait for an extended period of time before treatment options were available. Furthermore, if a lack of funding pertaining to initiatives for early intervention of autism was experienced then the onus was on the parents to provide funding to help their children, as well as help themselves deal with problems with their mental health – thereby leading to increased psychopathology and strain on resources. Also vitally important was the access and source of information pertaining to various treatment methods. It was seen that parents were bombarded with a plethora of treatment options from a variety of professionals, and the majority of treatments that were referred were not empirically supported. Therefore, in order for parents to select the most effective treatment options, initiatives and funding must be in order to deal with this problem.

            In summary, three challenges were identified and expanded upon dealing with why exactly they were considered challenges and how they affected the treatment of autism. However, it was beyond the scope of this essay to go into extended depth about viable options to reduce the challenges in the first place thereby reducing the implications of these challenges.

References
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[1] I use the term family unit to describe the individuals present within the “family”: that is, mothers and fathers as well as siblings – the latter however not discussed for the purpose of this essay. During the course of this essay I focus on the effects of stressors associated with parents of children (foregoing adults) with ASDs.
[2] This is in line with the most recent draft of the DSM-5, which proposes to eliminate the subtypes of ASD (i.e., Autistic Disorder, Asperger’s Disorder, and Pervasive Developmental Disorder-Not Otherwise Specified), as they are more similar than different. It is recognized that ASDs have homogeneity in core symptoms and heterogeneity in severity. This observation is supported by literature and creates the ability to simplify the diagnostic process by discussing ASDs in terms of mutually exclusive categories of the same disorder rather than distinct disorders, thus increasing diagnostic reliability (Crowe & Littlefield, 2012). One final note is that in the course of this essay, the terms ASD(s) and autism shall be used interchangeably.
[3] I shall spend a small amount of time on the problems in funding for both initiatives for parents, as well as initiatives for children suffering with autism – the latter being discussed in primacy. Then I shall discuss what has been done to correct this problem, and the challenges inherent within the initiative to overcome financial barriers.
[4] In the context of ASD, early intervention leads to the best results when initiated by the age of three years.

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