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| 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.
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| 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.
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| 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.
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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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