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Child & Family Behavior Therapy

ISSN: 0731-7107 (Print) 1545-228X (Online) Journal homepage: http://www.tandfonline.com/loi/wcfb20

Critical Issues in Causation and Treatment of Autism: Why Fads Continue to Flourish

Mary E. McDonald PhD , Darra Pace EdD , Elfreda Blue PhD & Diane Schwartz EdD

To cite this article: Mary E. McDonald PhD , Darra Pace EdD , Elfreda Blue PhD & Diane Schwartz EdD (2012) Critical Issues in Causation and Treatment of Autism: Why Fads Continue to Flourish, Child & Family Behavior Therapy, 34:4, 290-304, DOI: 10.1080/07317107.2012.732849

To link to this article: https://doi.org/10.1080/07317107.2012.732849

Published online: 06 Nov 2012.

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Child & Family Behavior Therapy, 34:290–304, 2012 Copyright © Taylor & Francis Group, LLC ISSN: 0731-7107 print/1545-228X online DOI: 10.1080/07317107.2012.732849

Critical Issues in Causation and Treatment of Autism: Why Fads Continue to Flourish

MARY E. McDONALD, PhD, DARRA PACE, EdD, ELFREDA BLUE, PhD, and DIANE SCHWARTZ, EdD

Department of Counseling, Research, Special Education, and Rehabilitation, Hofstra University, Hempstead, New York, USA

The increasing incidence of autism and the lack of specific answers regarding causation have given rise to unproven educational interventions and medical treatments. Parents of a newly diagnosed child can easily fall prey to interventions that promise cures. These interventions may be harmful and, thus, pose one of the critical issues in special education today. This article will discuss some of the suspect interventions that have been popularized through the media (i.e., celebrities, journalists, and professional organizations). The authors argue that using the scientific method is clearly the antidote for pseudoscience; the need for accurate research-based decision making is apparent.

KEYWORDS autism spectrum disorders, evidence-based practice, diet, intervention, parent

The ever-increasing prevalence of autism highlights a major reason for public concern. Worldwide, this disorder affects children, regardless of race, religion, and socioeconomic status. Currently, autism occurs in 1 in 110 live births (Centers for Disease Control and Prevention [CDC], 2010). This rate of incidence represents a dramatic rise over the past 15 years. According to the CDC, between 1993 and 2003 there was a startling 800% increase in the incidence of autism spectrum disorders (ASD). Such epi- demic escalation in the diagnosis of autism invites speculation about the cause of the disorder.

Received 1 October 2010; revised 26 February 2011; accepted 7 March 2011. Address correspondence to Mary E. McDonald, PhD, CRSR Department, Hofstra

University, Hempstead, NY 11549, USA. E-mail: [email protected]

Critical Issues in Autism 291

Food additives, pesticides, and other teratogenic agents, have been put forth as one possible explanation for the etiology of ASD. Particular attention has been paid to thimerosol (mercury), which has been present in vaccines given to young children.  Parents and others have pointed out that as the number of vaccinations has increased, so has the incidence of autism. To date, however, no research supports a link between autism and the mercury in vaccines (Nelson & Bauman, 2003; Stehr-Green, Tull, Stellfeld, Mortenson, & Simpson, 2003).

The belief that vaccines cause autism generates fierce differences in opinion among parents, researchers, and the medical community. Over the past two decades, the number of vaccines given to children has increased greatly.  In the  early 1950s, there were four vaccines: diphtheria, tetanus, pertussis, and smallpox. Because three of these vaccines were combined into a single shot (DTP), children received five shots by the time they were 2 years old and not more than one shot at a single visit. Today, children could receive as many as 24 shots by 2 years of age and five shots in a single visit (Children’s Hospital of Philadelphia, 2010).

In 1998, British research led by Dr. Andrew Wakefield suggested some link between autism and vaccines (Nicoll, Elliman, & Ross, 1998). His research findings, published in Lancet, a prestigious medical journal, linked the measles-mumps-rubella (MMR) vaccine to autism. In spite of overwhelming scientific evidence that vaccines were safe, refuting Wakefield’s findings (Offit & Jew, 2003), concern about the safety of vaccines persists and a worldwide scare has been launched.  As a result, the number of children vaccinated in the United Kingdom plummeted with cases of childhood measles rising significantly (Wang, 2010). In the United States, more than 2.1 million children (20%) enter preschool without vaccines for measles, whooping cough, and Hepatitis B (Smith, Chu, & Barker, 2004).  

Now after all these years of consumer campaigns against the use of vac- cines, evidence has emerged that Wakefield was both unethical and untruth- ful about his study. Lancet has issued a full retraction of his 1998 study and the General Medical Council, Britain’s professional medical regulatory orga- nization, ruled that Dr. Wakefield acted “dishonestly and irresponsibly” (Wang, 2010). Yet, in the face of all this evidence, “die-hard believers in the theory that vaccines cause autism are already denouncing the British medical establishment for smearing one of their heroes” (Dachel, 2010). Metz, Mulick, and Butler (2005) find it is ironic that unsupported concern about a possible cause of autism may actually lead to an increase in maternal rubella, one of the known causes of autism and other developmental disabilities.

THE PERSISTENCE OF INVALIDATED INTERVENTIONS

The Wakefield episode illustrates how some parents of children with autism find themselves desperate for answers and vulnerable to fads and

292 M. E. McDonald et al.

pseudo-science.  They will continue exposing their children to risks by depriving them of protection from dangerous diseases and spend all of their resources to provide unproven and unsound treatment protocols. The popu- larity of unproven educational interventions and medical treatments, which in some cases may be harmful, is one of the critical issues in special educa- tion. According to Metz et al. (2005), “Fads in the treatment of autism tend to be harmful, fruitlessly expending limited time and monetary resources, falsely raising hopes and expectations, and distracting and detracting from efficacious efforts” (p. 238). They identified the following reasons why par- ents gravitate toward such interventions and treatments:

• The nature of autism is perceived as a severe, life-long condition, resulting in a poor prognosis.

• Parents, new to the diagnosis, lack knowledge about the disorder, and maybe minimally trained in scientific inquiry.

• Parents must deal with conflicting information and competing perspectives from professionals.

• The fads are often presented as quick fixes or cures. • There is inadequate information about the cause of autism. • Medications don’t provide a cure; they can only alleviate certain symptoms.

Parents of a newly diagnosed child can easily fall prey to alternative interventions that promise cures. Despite the lack of scientific evidence to support many of these alternative therapies, parents frantic to help their chil- dren frequently go to the Internet to find a successful treatment for their child with autism. In 2005, when Metz et  al. conducted an online Google search for “autism and treatment,” their search resulted in 65 treatments and interventions, the majority of which have not undergone rigorous scientific study (p. 237). Everyday the Internet yields millions of links related to autism treatment, including personal stories of amazing improvement in functioning written by parents of children with autism spectrum disorders. While such stories have great appeal, Heward (2009) recommends “healthy skepticism” when evaluating fantastic claims. Many times critical scrutiny of new expla- nations of causations and interventions lag behind the media’s introduction of this information to the public. This can result in ideas and practices taking root, which lack effectiveness, waste time and money, and do not benefit children with autism. Therefore, parents need to carefully consider highly touted interventions that are unsubstantiated by the U.S. Food and Drug Administration and the scientific community.

ROLE OF THE MEDIA

Members of the media are always on the lookout for sensational news— stories that will sell. This is evident in a CBS News (2003) report on autism:

Critical Issues in Autism 293

Although substantial and well substantiated progress seen across the decades in dimensions such as the teaching of adaptive skills, treatment of behavior problems, and the overall quality of life of individuals with developmental disabilities, these well-grounded, positive developments have often been eclipsed by the steady appearance of “breakthroughs,” “new models,” “cures,” and “revolutionary strategies,” that typically prom- ise results that are more rapid, more beneficial, and easier to achieve than any seen before. (Favell, 2005, p. 19)

Unfortunately, the promise of new and better mousetraps often include strident denunciation of all that had gone before (Favell, 2005). Information regarding autism and autism intervention is readily available through multi- ple media sources (i.e., newspapers, television, publications, film, Internet blogs), providing novel ideas and approaches for a very receptive audi- ence. The easy access to undocumented information is compounded by a phenomenon first identified by Pierce in 1877 who posits that individuals grant others the power to change their beliefs if they think that person has higher social status or special knowledge (Vyse, 2005). In our media-driven society, celebrities often promote political and social agendas with great suc- cess, regardless of the validity of what they are saying.

For example, Jenny McCarthy, a well-known actress, touted the use of diet to help her son Evan to “recover” from autism and was an ardent campaigner against the use of vaccinations. She believed that a variety of biomedical interventions (a gluten and casein-free diet, vitamin supplementation, detoxification of metals, and anti-fungal) recovered her son’s neurological function and enabled him to benefit from educational interventions (speech therapy and applied behavior analysis). She told the public, “He could not learn while he was frozen in autism” (McCarthy & Carrey, 2008). Her story has received enormous media attention with many parents believing that if they follow her regimen, they too will recover their child. Unfortunately, these biomedical interventions do not have scientific support and may offer families false hope for recovery.

OTHER INFLUENCES

Professionals, with what may be well-intentioned motives, further the use of unproven interventions by offering parents the option of using approaches that have no documented research to support their effectiveness or success. When a credentialed professional utilizes such an intervention, he or she instantly lends credibility to the treatment protocol. In addition, many inter- ventions depend on personnel who have limited training or experience to provide the service. Despite these facts, professional organizations are often reluctant to denounce such treatments, thereby tolerating practitioners with

294 M. E. McDonald et al.

uncertain expertise who use questionable interventions. This reluctance may contribute to the proliferation of pseudoscience treatment fads (Newsom & Hovanitz, 2005).  

The combined impact of the media, celebrity endorsements, and pro- fessional tolerance create a climate that opens the door for all types of theo- ries and applications. Some of the most popular and suspect interventions and therapies fall into one of the following categories: biomedical, therapeu- tic, behavioral and educational.

BIOMEDICAL APPROACHES

Individuals who believe the cause of autism is physiological in nature may seek biomedical interventions (i.e., nutrition, diet, vitamin and hormone therapy, even the refusal to give vaccines to children). The success of dietary regimens for children with disabilities is particularly attractive to parents in view of the fact that this approach has shown positive results for some disabilities (Huijbregts, DeSonneville, Licht, Van Spronsen, & Sergeant, 2002).

Dietary intervention has been proven effective for treating phenylketonuria (PKU)  and diabetes. However, the generalization of the treatments of PKU and diabetes to autism are examples of pseudoscience, not evidence-based research. Still parents cling to the possibilities of a gluten- and casein-free diet, despite lack of any supporting research (Elder et  al., 2006; Mulloy et al., 2011). In addition, the idea of natural therapy such as removing preservatives and additives from food is appealing, perceived as one that is safer than a manufactured or chemical one. “But natural does not mean safe or effective” (Smith, 2005, p. 51).

 Another biomedical approach involves the use of secretin. Horvath and colleagues (1998) reported improvement in the functioning of three children with autism after intravenous infusions of purified porcine secretin, an amino acid hormone, used in the treatment of gastrointestinal problems. Following the publication of the results of Horvath et al.’s study, an explosion of interest in using secretin as a treatment found its way to the Internet. However, numerous scientific studies have found no significant benefit from the use of secretin as compared to the use of a placebo (Coniglio et al., 2001; Coplan et al., 2003; Dunn-Geier et al., 2000; Molloy et al., 2002; Sandler et al., 1999).

Chelation therapy treatment aims at lowering the levels of mercury, lead, or other heavy metals in the body. Available information about current use of chelation therapy in autism is scant, and what exists implies that inap- propriate agents, routes, or dosage schedules of administration are being used as autism treatments.

It is doubtful that individuals with ASDs have high levels of heavy metals or that chelating agents would be effective in reversing neurological damage

Critical Issues in Autism 295

from metal exposure (Levy & Hyman, 2005). There is no compelling evidence to suggest that chelation therapy is an effective treatment for autism. A review of Medline (1966 to April 2006) and Premedline did not yield any relevant reviews or randomized controlled trials of chelation therapy for autism spec- trum disorder (Sinha, Silove, & Williams, 2006). Perhaps most significant is the danger involved with some forms of chelation therapy as it may cause severe side effects or even death (Kane & Linn, 2005). A number of professional organizations have also expressed growing concern regarding the use of che- lation as an intervention for individuals with autism (National Institute of Mental Health, 2008). Additionally, the FDA recently stated that chelators that are sold over the counter as treatments for autism, are dangerous and illegal. They stated that they are potent drugs that carry serious risks—including kidney damage, dehydration, and even death (Tsouderos, 2010).

ANIMAL THERAPEUTIC APPROACHES

Some therapeutic treatment approaches involve children interacting with animals (i.e., therapeutic horseback riding, dolphin therapy, or pet therapy). In Dolphin Assisted Therapy (DAT), children with autism swim with the dolphins. Parents have reported that after their children experience swimming with dolphins, their ability to communicate increased, and they “opened up.” For a single treatment in a series of sessions, the costs range from $75 to a few hundred dollars. Two reviews of DAT (Marino & Lilienfeld, 1998; Humphries, 2003) concluded that there is no credible scientific evidence for the effectiveness of this intervention. Marino and Lilienfeld (2007) examined the methodological status of DAT by reviewing five peer-reviewed DAT studies published in the last 8 years. The authors found that all five studies were methodologically flawed and plagued by several threats to both internal and construct validity. They concluded that nearly a decade following their initial review, there remains no compelling evidence that DAT is a legitimate therapy or that it affords any more than fleeting improvements in mood. In spite of the expense and lack of any research to support the claims associated with this therapy, parents continue to seek out DAT. 

FACILITATED COMMUNICATION

Facilitated communication (FC) is a method by which a communication facil- itator gives physical support to enable an individual with limited or no speech to type on a keyboard or point to items on a communication board (Biklen, 1990). Initially, FC met with great excitement and expectations. However, the underlying theory of FC is that individuals with autism have motor planning problems, known as apraxia, and therefore cannot use a

296 M. E. McDonald et al.

keyboard to communicate. For many parents the belief that their child merely has a physical disability, not a developmental disability, is extremely appeal- ing. Overwhelming scientific evidence (Mostert, 2001; Eberlin, McConnachie, Ibel, & Volpe, 1993; Gorman, 1998) demonstrates that with FC, the commu- nication comes from the facilitator, not the child.

This scientific evidence prompted professional organizations to speak out against the use of this unproven method. The American Psychiatric Association (1994) made a resolution that “facilitated communication is a con- troversial and unproven communicative procedure with no scientifically dem- onstrated support.” The American Association on Mental Retardation (1994) stated that “facilitated communication has not been shown to result in valid messages from the person being facilitated.” The association supports the use of validated augmentative and alternative communication techniques.

Despite the lack of endorsement for FC from national professional orga- nizations, FC continues to be used in various programs today often at great cost to parents and children with autism spectrum disorders. This is charac- teristic of fad treatments as “they are never completely abandoned; they persist in small groups of professionals and resurface through the activities of these professionals, or advocates who are unaware of the history of simi- lar therapies and their disuse and believe the treatment they have discovered to be novel” ( Jacobson, Foxx, & Mulick, 2005, p. xiv). 

UNINTENDED CONSEQUENCES

In a climate with parents and professionals desperate for answers, it is under- standable that the prevalence of simple and hopeful solutions would take hold, even without scientific evidence to support the claims made about them. However, in many cases these seemingly benign treatments can pose dangerous unintended consequences. The claims of sexual abuse generated from facilitated communication and the recurrence of measles and other childhood communicable diseases as a manifestation of Wakefield’s research illustrate what happens when fad treatments become popular in spite of no scientifically demonstrated support for its efficacy.

Facilitated communication offered the promise that people with autism had normal intelligence and undiscovered language. What evolved from this was an outpouring of abuse claims supposedly from individuals who could not speak about it before but with FC could now accuse their abusers. Multiple law suits followed. In spite of overwhelming legal verdicts depicting FC claims of abuse as having no credibility (Prieto v. County of Orange, 1997), the lives and reputations of loving and caring parents were destroyed. Further, scientifically based studies found that the typed language output that was attributed to individuals with disabilities was really the voice of the paraprofessional or professional who provided the facilitated assistance

Critical Issues in Autism 297

(Bligh & Kupperman, 1993; Eberline et al., 1993; Hudson, Melita, & Arnold, 1993; Klewe, 1993).

Similarly, Wakefield’s claims set in motion enduring questions about the link between childhood vaccinations and autism. In 2001, mercury-based preservatives were removed from childhood vaccines, but the fear about vaccines continued. Despite the recommendations of the Centers for Disease Control and Prevention (CDC) and assurances from the medical and health community that vaccines are safe, a growing number of parents have requested exemption from the vaccine requirement for children entering school. According to health officials, requests for vaccine exemptions in the metropolitan area (New York, New Jersey, Connecticut) have risen continuously over the past 5 years (Rockoff, 2010). This has led to many more unvaccinated children entering school posing a danger to themselves and other children. The New England Journal of Medicine (Omer, Salmon, Orenstein, deHart, & Halsey, 2009) reports that the chance of unvaccinated children getting measles is 22 to 35 times the rate of vaccinated children. While Wakefield’s studies have been retracted from the research literature and his claims totally repudiated by the scientific community, there continues to some parents who hold on to the connection between autism and vaccines.

SCIENTIFIC METHOD AND LEVELS OF EVIDENCE

Perhaps, the “last line of defense against fad treatments is that professionals have to be trained in the scientific method. They need to use their training and knowledge to critically evaluate new treatments and apply rigorous criteria before adopting them in use” (Zane, 2005, p. 186). The use of the scientific method is clearly the antidote for pseudoscience; however, evaluation of the current research literature may not be easily accessible for most people. To address this concern and meet the needs of the professional community and parents for accurate appraisal of interventions for ASD, many in the professional community have generated user-friendly resources. 

Two examples are the report by the Maine Department of Education, & Maine Department of Health and Human Services (2009) and the work of Reichow, Volkmar, and Cicchetti (2008). The Maine Department of Health and Education in 2009 published a state of the evidence report. The purpose of their report was to review the research literature to disseminate extent of empirical evidence for treatments commonly used for children with autism. The guide provides professionals, policy makers, and parents the most current, efficacious treatments. Reichow et al.’s (2008) validated rubric is a valuable resource which assigns evidence for interventions across six levels, ranging from Level 1—proven and effective and Level 6—evidence of harm. This rubric was used by the Maine Department of Health and Education in 2009 to assign interventions to specific levels (see Table 1).

298

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