Oprah or ABA?

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Employing evidence-based practices is integral to the mental health

counselor’s success in the managed care system that exists in the United States

today. This means that the counselor is responsible to remain cognizant of current

standards of therapeutic intervention strategies based on what has been proven

effective through rigorous empirical study. The managed care system values that

which is efficient and cost effective above all else, especially higher that which

is merely intuitively evident to a single individual. The high value placed on

empirically proven, yet succinct, treatment methods accounts for this relatively

recent development in the mental health services industry (Deegear & Lawson,

2003). Curkrowicz et al. (2005) suggests that there exists an ethical responsibility

on the part of the mental health counselor to focus their treatments around

evidence-based practices.

Children with autism spectrum disorders (ASDs) suffer from a wide range of

deficits, the treatments of which vary to equally wide degrees. It is a daunting task

to effectively treat social and cognitive impairment while managing the debilitating

effects of lagging language development and repetitive behaviors that impede all

intervention strategies and it calls for a variety of skills. The effects of autism on the

family adds another level of treatment concerns to the counselor who must consider

the restrictive environmental forces that help stunt development as well as the

positive forces that may be utilized to promote skill development.

Challenges exist in identifying evidence-based practices. General ignorance

on the part of parents and counselors with regard to fundamental research

principles and the advanced knowledge needed to understand the finer flaws in

empirical research provides an opening for the dissemination of flawed data in

support of flawed treatment methods. For instance, many studies do not make an

effort at determining treatment integrity. Wheeler et al. (2006) found that only

11 out of 60 studies on behavioral treatment interventions for children with ASD

even assessed treatment integrity. This basic oversight on the part of researcher

to collect data on the level at which the independent variable is being properly

administered severely undercuts the results of these studies.

As practitioners of evidence-based practices, do we have the obligation to

advocate for our proven methods? And, as neutral empathic therapeutic forces,

do we have the right? Our profession is based on foundations laid by intrepid

individuals pursuing their vocations as philosophers, medical doctors, and

counselors; we may risk stunting such innovators by limiting treatment methods.

There is always room for research, but when the data point in one direction, yet

media debates and mass ignorance pull parents in another, are we obligated to

defend the truth or remain passive reflections of runaway nescience?

Autism spectrum disorders (ASD) compose a group of distinct pervasive

developmental disorders (PDD) classified under axis two of the current edition

of the Diagnostic and Statistical Manual of Mental Disorders. Children with ASD

exhibit; impaired social skills, including play and familial interaction; decreased

cognitive development, including communication skills; and repetitive behaviors

and interests, which can often be observed as simple repetitive motor activity such

as tapping, finger movement, rocking, or repetitious speech (Ruble et al., 2005;

Szatmari, 1999).ASD symptoms typically emerge in early childhood around the

age of two and, until recently, that age has marked the earliest opportunity for

professional screening and diagnoses (Layne, 2007).

Current prevalence rates for ASD range from 1 in 166 to 1 and 1,000,

although most cite the likely range as 1 in 500 to 1 in 1,000, ASD is more prevalent

among males than females by a ratio of 4 to 1 (Layne, 2007; Heidgerken et al., 2005;

Taylor, 2006). The incidence rate for ASD has been rising steadily over the past two

decades (due to increased diagnostic effectiveness, expanded range of diagnosis,

and actual rise in prevalence (Ruble et al., 2005; Heidgerken et al., 2005; Rutter,

2005; Layne, 2007). This rise in prevalence has significant implications for health

care service providers, educators, auxiliary service providers, and the systems these

professionals are a part of (Layne, 2005).

Although the precise causes of autism are not known, researchers

have identified many biological and environmental factors that contribute to its

development. It is unlikely that a single cause exists for the development of ASD as

even genetic research has moved to a multiple gene interaction theory, but the

commonalities shared among individuals with ASD will hopefully guide researchers

to a multidimensional understanding of the disorder and to more effective methods

for prevention, treatment, education, and a better quality of life for individuals with

ASD and their families. Put plainly, it’s complicated. As is true for most social

science inquiries, the debate over whether environmental or biological factors

contribute more to ASD persists, but because ASD is rooted in families and is really a

familial issue, the debate is especially heated. Although the overwhelming amount of

credible research suggests that roughly ninety percent of the projected contributors

to ASD are hereditary, some groups strongly believe that environmental

contributors such as early childhood inoculations play a causal role (Taylor, 2006;

O’Dell & Brownlow, 2005; Szatmari, 1999).

Perhaps the most well known misconception regarding ASD is the belief

of some that early childhood inoculations play a primary role in the etiology of

ASD. This belief has instigated a public debate, which has dominated the media’s

discussion of autism for years, and without any empirical evidence in support of the

inoculation theory.

In the late 1990’s, when ASD incidence began its current rise, attention

shifted to the combined measles, mumps, and rubella (MMR) vaccination that had

been administered since the 1980’s (O’dell & Brownlow, 2005). This shift was

partially due to wide-spread criticisms of giving 18-month-old children with various

chemical concoctions at once. The inoculation debate within the ASD community

began when Andrew Wakefield published a paper highlighting the correlation

between the typical age of children when they are inoculated and the average age at

which ASD was diagnosable at that time. In 1998, Wakefield published his paper in

The Lancet, a British publication and it immediately spurred the media into action.

The fact is that Wakefield’s study only reported that a small number of parents

indicated a correspondence between the two events, inoculation and symptom

expression. This finding held little empirical merit and even the United Kingdom’s

Chief Medical Officer described The Lancet’s material as poor science (Honda,

Shimizu, & Rutter, 2005; Taylor, 2006). Added to this inherent scientific weakness

is the fact that Andrew Wakefield accepted money from a personal injury lawyer

who files these terratogen-based lawsuits. If the answer to whether or not we

professionals should remain complicit in the spread of fraudulent practices by

highly educated charlatans is vague then I hope the answer to whether or not

researchers should accept bribes is still relatively clear.

Misconceptions like this can be profoundly harmful and can develop in the

most alarming ways. Taylor (2006) found that of 92 parents of children with ASD

who believed MMR played a causal role in their child’s developmental disability,

39% had expressed concerns about the child’s behavior previous to the vaccination,

yet only 1% remembered that occurring. How do these types of cognitive missteps

occur among so many and how great an impact do they have? It’s evident that the

misconceptions are spread through the media. A very clear example of how these

erroneous beliefs can be implanted into the minds of millions in a single instant is

that media-mogul Oprah Winfrey has dedicated entire shows to the MMR theory,

hosting figures like Jenny McCarthy who are staunch supporters of the inoculation

theory. Though I think the world of Ms. McCarthy for her ability to not only be a

great parent for her child with autism but to also work tirelessly as an activist, I

don’t get the impression that Research Methods was a prerequisite for Singled Out

and that she might do a lot of good by singling herself out of the discussion. The

need for reason is a powerful one, but when we are too hasty and fulfill that need

with junk information the effects can be devastating.

The United Kingdom, a country that had previously been nearly free of

measles and rubella, saw a marked increase in incidence following the intense

media coverage. The reduction of vaccination uptake was pronounce; it shifted

from 80% to around 30% between 1998 and 2005 and, in due course, 70 children

died from what have been preventable illnesses for decades (O’Dell & Brownlow,

2005; Taylor, 2006).

Pervasive misconceptions such as the one claiming a causal relationship

between the MMR vaccination and autism can incite huge media debates, topics for

afternoon talk shows, and political talking points, all of which are irrelevant to most

people. However, for individual families dealing with ASD they can be profoundly

important. Counselors dealing with families of children with ASD should be mindful

of these misconceptions and have the knowledge base to challenge them effectively;

it is key to incorporate learning into the counseling process and it is natural for

parents dealing with the stress of caring for a disabled child to put all of their energy

into finding reasons why. They are also often charged with maneuvering a complex

and often willfully obstructive system while struggling with the emotional impact

that autism has on their family life. Unfortunately, sometimes the reasons they

accept are far from the truth. In these cases it is difficult for some people to retract

all of the energy and commitment they put into their mistaken belief and they cling

even harder. Professionals experience the same effect, seeing beliefs and theories

as fact, but professionals have an ethical obligation to disregard those erroneous

beliefs and rely on empirical evidence and evidence-based practices, ensuring

the most reliable service to our clients. When working with individuals with ASD

amidst the widespread misconception that MMR vaccinations play a causal role in

the etiology of autism the question arises, is it a professional’s ethical obligation to

contest this misconception, or only to applaud each other at conferences and meekly

cower behind the power of proper investigation? I guess my perspective is clear.

The results of these investigations point away from MMR inoculations

and toward complex genetic and environmental forces interacting to cause this

developmental disorder. Twin studies have shown that the concordance rate of ASD

amongst monozygotic twins is around thirty-six percent and three percent among

dizygotic twins (Larsson et al., 2004). This relatively high level of concordance

among monozygotic twins points to a strong genetic component to the development

of ASD. Because the relationship is not perfect, however, other factors must be

involved. The search for these contributors has uncovered many risk factors that

are shared among individuals with ASD. For instance, prenatal exposure to rubella,

thalidomide, or alcohol has been shown to be associated with a higher risk for

ASD. Similarly, low birth weight and Apgar score have also been associated with

increased occurrence of ASD (Szatmari, 1999).

As mentioned above, many of the observable characteristics of autism

spectrum disorder relate primarily to social and cognitive disabilities, often

manifesting as impaired communication skills and interpersonal relationship

development. There are various theories as to why this occurs. For instance, some

believe that deficits exist in an individual with ASD’s ability to “read” other people’s

affect or underlying cognitions. Another theory focuses on the ability to share focus

between social demands and environmental stimuli, which is thought to be absent

in individuals with ASD (Gena, Couloura & Kymissis, 2005). Recent discoveries

in neuropsychology offer clues as to why these deficiencies exist and may offer

opportunities for more effective ASD diagnosis, treatment, and prevention.

Hughes (2007) reports findings that underconnectivity in and between key

regions of the brain is a consistent finding among individuals with ASD. The first

two years of life are key for the proper development of brain structures and is

when white-matter volume increases, synapses develop, and myelination occurs.

These processes connect brain regions and form the network that will allow for

speedy information processing and retention. In infants with ASD white matter

overgrowth is seen up to the age of two, but at that age growth stops abruptly and

degradation begins. The effects of this are seen throughout the brain, but the region

implicated the most in ASD is the corpus callosum and the thinning of that region is

associated with lower IQ and slower processing speed because the corpus callosum

is responsible for connecting brain regions and managing information sharing

between hemispheres.

Hughes (2007) describes connectivity within the frontal lobe and between

it and other brain regions as “…disorganized and inadequately selective… poorly

synchronized and weakly responsive” (pg.21). Limited frontal lobe activity affects

many cognitive and behavioral functions including language, impulse control, and

socialization. Research has found that the connecting fibers responsible for the

transfer of data between the frontal lobe and other brain regions are significantly

shorter in individuals with ASD than those with typical brain maturation.

Wang et al. (2006) studied the neural activity of autistic children during the

use of irony, a type of language that necessitates an understanding of the linguistic

mechanisms reflective of the speaker’s intent as well as the ability to process

complex contextual social cues. Children with autism were significantly less able to

identify irony and showed activation in areas not typically used for completion of

this type of task. This consistent finding of stray or atypical activation implicates the

disorganized connectivity referred to by Hughes in decreased linguistic and social-

emotional function.

It is important for professionals in the mental health services field not

to disregard nutrition and the possible effects of teratogens on their clients with

ASD, but placing the majority of their focus on these issues would be a mistake given

the lack of evidence supporting the MMR theory. This erroneous belief has spawned

intervention strategies such as chelation and gluten/casein free diets. Chelation is

the process by which “heavy metals” are cleansed from the body. This procedure

often involves orally administered medications and chemical showers that are

considered torturous by the children with ASD who are subjected to them. Also,

chelation can be extremely expensive and often incurs huge debt on to parents who

persist with the treatment at their alternative doctor’s behest. It is not unheard of

that parents will take out second mortgages on the off chance their child could be

cured. Committing to a gluten/casein free diet is also extremely expensive and

difficult to stick to in our world of processed, imported, and exported food. In their

review of the alternative medicine literature, Curtis & Patel (2008) relay many

instances of correlation data that point to higher levels of “heavy metals” and

exposure to other toxins in children with ASDs. However, few, if any, treatment

implications can be gleaned from these studies aside from the sage advice that

mothers shouldn’t treat their pregnant bodies so poorly and that parents should

have a base knowledge of nutrition for the benefit of their newborn.

Knowing what the empirical data points to as the likely genetic and

developmental underpinnings of autistic spectrum disorders begs the question,

what works? Which treatment method best addresses these varied and complex

skill deficits within the context of basic neurological impairment? Individuals

with an autism spectrum disorder require a wide variety of professional services

designed to help them overcome the many cognitive, behavioral, and emotional

delays that characterize the disorder. Many children with ASD receive funding for

services such as physical, occupational, behavioral, and speech therapy through

their local school districts as part of their individualized education plan (IEP). These

types of services are designed to increase the functional abilities of the children

through intensive specialized exercises that are often implemented in a one-on-

one or small group educational environment. Children with ASD suffer from an

array of disabilities. These delays can affect anything from their ability to walk to

their ability to control impulsive behavior. No two children are alike and, therefore,

individualized treatment from a team of specialized professionals is necessary to

address the breadth of issues affecting each individual. Improvements in social

functioning often have a positive impact on other areas of functioning and open up

new opportunities for education.

Applied behavior analysis is a treatment approach, not merely a method

used in education. ABA, in one form or another, can be implemented in hospitals,

the home, public spaces, and certainly a counselor’s office. The ABA approach

can be used to eliminate negative behaviors such as self-injurious or aggressive

behavior and the rare eating disorder, pica. Conversely, ABA methods are used to

promote positive skills related to anything from academics and communication to

independent living (Hagopian & Boelter, 2005).

One form of ABA therapy that has seen a rise in use over the past few years is

video modeling. Video modeling incorporates the same methods used in typical “in-

vivo” modeling scenarios, but offers the consistency and efficiency of video, which

makes implementation easier and more cost effective. With video modeling the

goal is to promote generalizable social skill sets and not situation-specific learned

responses; video modeling is often used to teach appropriate affect responses. In-

vivo modeling (when a peer or therapist models desired behavior in person) has

shown to be effective, but specific to a given situation, which limits that efficacy

significantly. Video modeling has shown to offer that desired generalization and

to aid in the development of appropriate affect identification and response, which,

as mentioned above, is characteristically delayed in children with ASD (Gena et

al., 2005). Video modeling in counseling may resemble bibliotherapy, used when

treating typical adults or children.

Critics of applied behavior analysis cite the intense stress it can place on

an already strained family of children with ASD. To be effective, ABA needs to

be practiced for twenty to thirty hours a week and be used in the home, as well

as educational and clinical settings (Layne, 2007). This often places much of the

responsibility for therapy on parents, particularly mothers, who report higher levels

of strain, consistent with their participation in the ABA program. This criticism

is qualified, however, by the fact that mothers whose children participate in ABA,

but who are not responsible for as much of the therapeutic work themselves,

report less depressive symptoms than mothers of children not in ABA programs

(Schwichtenberg & Poehlmann, 2007). This provides further evidence for the utility

of applied behavior analysis and the possible need for more pervasive home-based

therapy in order to lessen familial strain and promote a better quality of life for both

the affected individual and their family.

Given what we know about autism spectrum disorders and the efficacy

of chelation versus ABA, do we have the ethical responsibility as advocates and

practitioners of evidence-based practices to actively educate parents, teachers, and

the public of the misleading claims made by the alternative medicine community?

Is it in the best interests of our clients to remain passive as they pursue such

costly and unproven paths of treatment? Do we, as practitioners, cow tow to the

emotionally overloaded decision making of often frightened and desperate parents

or remain steadfast advocates of our child clients and their family systems?

I firmly believe that we have that ethical responsibility and, larger still, the

duty to treat the parents of children with ASD in an effort to reduce stress, increase

confidence through competence, and improve their skills as parents of children

with disabilities. Parent studies have shown an increased risk for ASD among

children whose parents have a history of psychiatric disease, particularly those with

schizoid personality traits or affective disorders (Larsson et al., 2004). In a study

that controlled for the inherent stress of raising a handicapped child, Piven and

Palmer (1999) show that histories of families with multiple incidences of autism

reveal a significantly higher rate of axis one disorders, particularly major depressive

disorder and social phobia. Although both parental and prenatal influences

have correlational relationships with ASD incidence, research into the multiple

gene interaction theory may provide answers as to why some children are more

vulnerable than others to environmental stressors.

Parents of children with ASD may require an actively engaged

therapist to help them build the skill sets necessary to overcome the deficits

associated with their own disorders in order to make appropriate and well-

informed decisions for their children. From my experience working at the

Children’s Annex in Kingston, NY, which is a school for children with an ASD

diagnosis, I have come to appreciate that symptom expression is often a function of

family characteristics more than the child’s developmental deficit. ASD specialists

should start challenging parents by addressing just why they even consider these

unproven methods as viable options. This will, of course, incorporate a great deal of

empathic listening and a strong alliance. But specialists will need to be prepared

with knowledge and the ability to intervene on the level of the family system. This

is not a question of whether or not mental health counselors have the ethical

responsibility to, in effect, limit their treatment to evidence-based practices as

suggested by Curkrowicz et al. (2005). Rather, isn’t it so that counselors are

obligated to discount practices proven ineffective? As is true for all ethical

quandaries, the jury is out indefinitely and a continuing didactic discussion will

emerge, hopefully in support of an ever-improving string of therapeutic strategies

and empirical debate.


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