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The topic of interest and emphasis of this research pertains to the communication deficits associated with many individuals with Autism Spectrum Disorder (ASD) and how these deficits can in turn lead to difficulties expressing and communicating private events of pain, sickness, and injury. Wetherby and Prizant explain that, “the communication and language impairments of children with autism range from failure to develop any functional speech to the development of functional but idiosyncratic use of spontaneous speech and language” (Prizant & Weatherby, 2007, p. 109). Michael May and Craig Kennedy (2010) conducted a review of available supports and research related to individuals with intellectual disabilities and the possibility of health and medical risks. In their research they describe that,
Good health significantly improves a person’s quality of life. However, people with intellectual disabilities disproportionately have more health problems than the general population. Further complicating the matter is that people with more severe disabilities often cannot verbalize health complications they are experiencing, which leads to health problems being undiagnosed and untreated. (May & Kennedy, 2010, p. 4)
This area of the field is vital to study further, as a future practicing Behavior Analyst, since one of the largest populations served by BCBAs are individuals with ASD, who have limited to no vocal communication skills. Examining this topic in greater detail will allow further insight into how to best support individuals with communication deficits and ideally prevent further health and medical issues from occurring.
This research will begin by exploring the history of Autism Spectrum Disorder and the limited languages skills often characteristic of the diagnosis. Specifically, the history and development of ASD into the social and communication disorder that it is recognized as today (Tager-Flusberg, Paul, & Lord, 2013, p. 336). Establishing the diagnosis of Autism as a communication disorder is significant to addressing the implications of these deficits, such as the expression of medical and health concerns. Additionally, reflecting on the services and supports that have historically been provided to treat and develop these individuals’ communication will provide a historical lens to examine the effectiveness of these previous treatments at addressing the communicative deficits characteristic of Autism. Evaluating past treatments will then transition to an analysis and discussion of the behavioral elements and theoretical underpinnings of this topic. This will be followed by an in-depth review of the current available treatments demonstrating how Applied Behavior Analysis as a field can target the common communicative deficits, associated with ASD, in order to help this population access appropriate medical treatment. With this topic and the inherent implications and risks of serious health and medical concerns, due to restricted communication, an ethical examination will be important to reiterate the importance of ethics in best supporting a future caseload of clients. Lastly, an exploration of where the direction of the field is heading in the treatment of the communication deficits associated with Autism Spectrum Disorder will conclude the current research.
HISTORICAL OVERVIEW
History of Autism as a Diagnosis
Throughout the 109-year history of the diagnosis of Autism Spectrum Disorder (ASD), it has been revaluated, relabeled, and in turn what it means to have Autism has been transformed entirely (Evans, 2013, p. 13). Researchers, scientists, psychologists, and other medical professionals across the world and across decades of cases and studies have investigated many individuals and their personal symptomology of Autism Spectrum Disorder. Their work has soughtto better grasp the diagnosis and how it impacts the lives of those who have it. Understanding the historical context of the diagnosis of ASD directly reflects the past treatments and procedures utilized to support individuals with Autism. As the very definition of what it means to have Autism has transformed over time so have many of the prevalent and suggested interventions and treatments. Reflecting on this history enables a fuller grasp of the current state of available treatments for individuals with Autism Spectrum Disorder. Analyzing the history of and past treatments for ASD is vital to conceptualizing how the diagnosis has consistently moved towards a communication disorder. Autism being viewed and treated as a communication disorder has directly led to treatments that target these deficits in language, as well as training that addresses these communicative barriers, in order to help this population express private events of pain and illness.
The term Autism was first used and coined in 1911 by Swizz psychiatrist Eugen Bleuler. He used the term in his seminal text Dementia Praecox, or The Group of Schizophrenias. This influential text describes and names the diagnosis of Schizophrenia, denoting Autism as a more severe form of Schizophrenia. During his work, Bleuler portrays a subset of individuals with Schizophrenia and uses the term Autism to describe their characteristic traits. Bleuler described these patients stating:
The most severe schizophrenics, who may have no more contact with the outside world, live in a world of their own. They have encased themselves with their desires and wishes (which they consider fulfilled) or occupy themselves with trials and tribulations of their persecutory ideas; they have cut themselves off as much as possible from any contact with the external world. This detachment from reality, together with the relative and absolute predominance of the inner life, we term autism (Bleuler, 1950, p. 63).
Bleuler’s description and observations of these individuals as disengaged, withdrawn, and removed from their environment initiated many of the beginning ideologies of what Autism even was. He later depicts the communicative abilities of one individual with Autism, stating that “he does comprehend the sense of our words, can reproduce them but immediately afterwards he substitutes his own meaning for that of ours” (p. 373). Bleuler’s research begins to highlight some of the hallmark traits of what we now know as Autism Spectrum Disorder. Eugen Bleuler noted the communication deficits of Autism and even what is now known as echoic language. However, much of Bleuler’s emphasis on individuals with Autism is their preoccupation with their own imaginative world. He theorized that these individuals had deep imaginative thoughts; thus, they were disengaged from the world around them. However, throughout the majority of the early 20th century, Autism continued to be viewed as a subset of childhood Schizophrenia.
Thirty-years later, in 1943, Leo Kanner—an Austrian-American psychiatrist and physician—conducted further research on Autism at John Hopkins University (Ritvo, 1984, p. 3). Kanner’s groundbreaking study Autistic Disturbances of Affective Contact focused on eleven young children. Throughout his publication and research, Kanner thoroughly characterizes each individual’s level of behaviors, health, family history, linguistic ability, and other related symptoms. He describes the language abilities of the participants stating, “Eight of the eleven children acquired the ability to speak either at the usual age or after some delay. Three have so far remained ‘mute.’ In none of the eight ‘speaking’ children has language over a period of years served to convey meaning to others” (Kanner, 1943, p. 243). Kanner noted these language delays and limitations to speech in the children in his study, and elaborated that even the children who engaged in spoken language used words literally and had great difficulty with figurative or imaginative language. Kanner provided an example of one of the participant’s literal use of language, he explained that one of the participants was asked to put something down and sat the item on the floor. Another provided example was from the same participant, correcting his father’s statement that the picture was on the wall, whereas the participant insisted the picture was near the wall. These examples illustrate Kanner’s observations that individuals with Autism often use language in very rote, literal, and frequently inflexible ways (p. 220).
Kanner went on to state that, “when sentences are finally formed, they are for a long time mostly parrot-like repetitions of heard word combinations. They are sometimes echoed immediately, but they are just as often ‘stored’ by the child and uttered at a later date. One may, if one wishes, speak of delayed echolalia (p. 243). Kanner’s description of these children’s communication and literal use of language closely portrays some of the hallmark traits of ASD, even as they are viewed today. His research characterized Autism as a social and emotional disorder, arguing that it was a separate and very different diagnosis than childhood Schizophrenia (p. 248). Kanner’s influential publication directly contradicted how Autism had been defined and viewed prior.
Perhaps one of the most lasting and unfortunately detrimental elements of Kanner’s 1943 publication related to his observations of the participants’ families. Kanner noted “in the whole group, there are very few really warmhearted fathers and mothers…the question arises whether or not to what extent this fact has contributed to the condition of the children” (p. 250). Kanner elaborates and questions if the families’ demeanor directly led to the symptoms of their children or if there is perhaps a biological element to the diagnosis.
Kanner’s research and theoretical questioning initiated an idea that parents’ coldness resulted in infantile or childhood Autism. The theory was further popularized and coined as “The Refrigerator Mother Theory” by Bruno Bettelheim (1967). Bettelheim published The Empty Fortress: Infantile Autism and the Birth of the Self, which repeatedly referenced Kanner’s earlier research in Autism. Bruno claimed that the cold and unloving parents of these children with Autism directly caused their children’s symptoms. Bettelheim states in his publication, “throughout this book I state my belief that the precipitating factor in infantile autism is the parent’s wish that his child should not exist” (Bettelheim, 1967, p. 125). Throughout his text, Bettelheim reiterates the rejection of the child by the mother, motherhood depression, and the withdrawn affect of the parents and how these factors lead to the child’s symptoms of Autism. Bettelheim states, “maternal feelings, indifferent, negative, or ambivalent, are then made to explain infantile autism, while in my opinion only the extreme of negative feelings in the parents can set the autistic process in motion” (p. 127). Bruno’s theory, based on Kanner’s research, remained widely accepted throughout most of the 20th century. While the medical community now widely acknowledges that Bruno Bettelheim’s theory is inaccurate, it has continued to have lingering and lasting effects into the 21st century.
American psychologist Bernard Rimland took great trouble with Kanner’s research and insistence that the root of Autism stemmed from parental coldness. In 1964, he published Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior. Much of Rimland’s passion and interest stemmed from his own child’s diagnosis of Autism. He explores past research and potential flaws, specific to Kanner’s 1943 research. Rimland discusses limitations in Kanner’s study and his proposed etiology of Autism. He explains that, due to Kanner’s sample size, as well as the fact that his cases all were treated in a clinical setting, a disproportionate number of families were of higher socio-economic status. Rimland explains that this biased sample size is possibly an extraneous variable to Kanner’s observations (Rimland, 1964, p. 28).
Another potential variable highlighted in his research is the assumptions of the psychiatrist that the family has caused their own child’s diagnosis. Rimland states, “it has also been recognized that the parents, perceived that the psychiatrist regards them as having caused autism in the child, appear more cold and hostile to the psychiatrist than they otherwise would” (Rimland, 1964, p. 31). He continues to explain that it is not far-reaching for families to become reactive to a psychiatrist who perpetuates the concept that the parents are responsible for their child’s Autism. Rimland reiterates that families may become reactive, cold, and withdrawn with the therapist solely to the circumstances at hand. Later, in his research, Rimland emphasizes the plausibility that Autism is not environmentally controlled, rather that it is potentially tied to genetics or family biology (p. 39-43). He denotes many possible ties to genetic variables, instead of environmental circumstances, that may be the true etiology of Autism. Rimland even states that the potential coldness of families could be tied to genetics rather than environmental factors. Rimland’s research proposed contrasting ideologies of the potential cause of Autism. His research developed a broader discussion of the etiology of Autism.
Meanwhile, in Europe, Hans Asperger published an article “Autism and Asperger Syndrome” in 1944 related to Autism and defined it as a communication disorder (Asperger, 1944). However, Asperger’s research would not be translated into English until 1991. His research focused on children displaying symptoms characteristic of Autism, as described by Leo Kanner’s work. Asperger describes the communicative deficits of one of the participants in his research;
The content of his speech too was completely different from what one would expect of a normal child: only rarely was what he said in answer to a question. One usually had to ask a question many times before it registered. When he did answer, once in a while, the answer was as short possible. Often, however, it was sheer luck if he reacted at all! Either he simply did not answer, or he turned away while beating a rhythm or indulging in some stereotypic behaviour. Occasionally, he repeated the question or a single word from the question that had apparently made an impression on him; sometimes he sang, ‘I don’t like to say that…’ (Asperger, 1944, p. 43).
Asperger’s description of the communication limitations and deficits of individuals with Autism further reiterates the research and observations of Leo Kanner. He further reinforces claims similar to Kanner’s research when he delineates the differences between Schizophrenia and Autism: “While the schizophrenic patient seems to show progressive loss of contact, the children we are discussing lack contact from the start” (Asperger, 1944, p. 39). Asperger continues and later discusses common traits of his cases; “Autistic individuals are distinguished from each other not only by the degree of contact disturbance and the degree of intellectual ability, but also by their personality and their special interests, which are often outstandingly varied and original” (p. 67. He explains that noting these individualized differences of the participants allowed a more thorough understanding of Autism. An interesting footnote left by Uta Frith, the translator of Asperger’s work, discusses his brevity with describing more severe cases of Autism and his greater depth and focus on the milder cases of individuals with Autism. Frith claims that this is indicative of a shift in his niche area of interest in the field of autism (1991).
While Asperger’s research reiterates many of the same ideologies as Leo Kanner and both were published within the span of a few years, Asperger’s research did not receive widespread attention until Lorna Wing’s article, which describes the characteristic symptomology of Hans Asperger’s work, was published in 1981. Her publication popularized Hans Asperger’s 1944 research and brought Aspergers Syndrome to the forefront of the mental health world. Wing stated, “whereas Kanner’s work is widely known internationally, Asperger’s contribution is considerably less familiar outside the German literature” (Wing, 1981, p. 115). She continued to explain that Asperger’s research was less notable due to limited translations. Her publication made Asperger’s Syndrome and its related symptoms more widely recognized during this time.
In 1980, Autism was added to the Diagnostic and Statistical Manual of Mental Disorders III. The DSM III stated that over the years, “Various diagnostic terms, including Atypical Development, Symbiotic Psychosis, Childhood Psychosis, Childhood Schizophrenia, and others, have been used to describe these disorders in the past. However, clinical descriptions have typically overlapped and apart from Autistic Disorder, no generally recognized subtypes have emerged” (DSM-III, 1987, p. 33-34). They continue and explain that the symptomology of ASD is not related to that of adult Schizophrenia, as many researchers have hypothesized previously. The Diagnostic and Statistical Manual III also notes the characteristic traits related to Autism, stating that, “Impairment in communication includes both verbal and nonverbal skills. Language may be totally absent” (DSM-III, 1987, p. 34).
In 1997, the Diagnostic and Statistical Manual of Mental Disorders IV was released and characterized Autism as, “the presence of markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire of activity and interests” (DSM IV, 1997, p. 66). The DSM IV further described that, “manifestations of the disorder vary greatly depending on the developmental level and chronological age of the individual. Autistic Disorder is sometimes referred to as early infantile autism, childhood autism, and Kanner’s autism” (DSM IV, 1997, p. 66). The DSM IV also notes that Pervasive Developmental Disorders (PDDs) and Autism Spectrum Disorder were often used synonymously at this time to reference a slew of neurodevelopmental disorders (DSM IV, 1997, Wetherby & Prizant, 2007, p. 1). The overlapping core characteristics of both diagnoses being impairments in social interaction, verbal and nonverbal communication, and restricted and repetitive patterns of behavior (DSM IV, 1997, p. 66).
In 2013, Autism Spectrum Disorder was once again reclassified and adjusted as a diagnosis with the publication of the Diagnostic and Statistical Manual of Mental Disorders V (DSM-V, 2013). Perhaps the greatest shift between fourth and the fifth edition of the Diagnostic and Statistical Manuals was the expansion of the definition of the spectrum of Autism. Historically, there have been specified and separated diagnoses based on the severity of language and communicative deficits, repetitive behaviors, and other hallmark traits of ASD. However, in 2013, with the publication of the DSM-V, Autism Spectrum Disorder broadened to include both Asperger’s Syndrome, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) “Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s Disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder” (DSM-V, 2013, p. 51). The DSM-V continues to characterize the spectrum by, “persistent deficits in social communication and social interaction,” however the DSM-V emphasized these deficits across multiple contexts and settings (DSM-V, 2013, p. 50).
Another significant difference between the fourth and fifth editions of the Diagnostic and Statistical Manual is the introduction of “severity levels for Autism Spectrum Disorder” (DSM-V, 2013, p. 52). In the DSM-V, a tiered level system is introduced to better differentiate the range of symptoms, deficits, and behaviors associated with the spectrum of Autism. DSM-V distinguishes Level 1 as “requiring support”, Level 2 as “requiring substantial support”, and Level 3 “requiring very substantial support” (p. 52). They further elaborate stating that for individuals with Level 1 ASD, “without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions” (p. 52). For individuals with Level 2 Autism, “marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiations of social interactions; and reduced or abnormal responses to social overtures from others” (p. 52). Level 3 ASD is noted as the most pronounced level of Autism Spectrum Disorder, they indicate that individuals with this level have, “severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others” (p. 52). For all intents and purposes of this paper the predominant focus is on the communicative deficits of ASD, rather than the repetitive behaviors and restricted interests commonly associated with Autism.
As newer versions of the Diagnosis and Statistical Manual have been released the diagnosis and described symptomology of Autism Spectrum Disorder have been adjusted and changed with time. ASD has been defined differently as a diagnosis over the last three editions of the Diagnostic and Statistical Manual. The changing of the diagnosis over time has directly correlated with the availability and quality of services and resources provided to individuals with ASD.
Since 1911, when Autism was first referenced in the literature to present day, its definition as a diagnosis has shifted entirely. Autism has been transformed from a subset of Schizophrenia to what it is now recognized as today as a spectrum or wide-ranging social-communication disorder. As research and studies have progressed over time, and the understanding of ASD has become more thorough, it has allowed for higher quality and more effective therapies, interventions, and treatments to be developed that explicitly target the hallmark characteristics of the disorder. Reflecting on the history of the diagnosis directly provides a comprehensive lens to analyze how the view of ASD over time directly effects the therapies and other supports that have been used with individuals on the spectrum. As the link between communication deficits and Autism have become increasingly recognized, specific interventions have been put in place to target these deficits in communication. Some of these interventions have been developed to target communication barriers of the expression of pain and illness often prevalent in this population.
History of Treatments for Autism
As years of research have expanded the very definition and diagnosis of Autism Spectrum Disorder, the treatments utilized have drastically varied over the course of time. Throughout years of Autism treatment, a variety of approaches and therapies have been used; ranging from electroconvulsive therapy to dietary restrictions, removal of children from the home to psychotropic medication, and punishment procedures to speech and behavioral therapy. Many of these treatments have not stood the test of time or scientific scrutiny and are no longer considered viable or ethically-sound forms of treatment for ASD. Evaluating these past treatments allows an analysis of, both effective and ineffective, interventions used over time for individuals on the Autism Spectrum. The course of these interventions over time has increasingly moved towards communication-based strategies and interventions that target the hallmark communication deficits associated with the spectrum. This trajectory of treatment allows for specific training for expressing private events to be taught, such as pain and sickness.
One prevalent treatment used throughout decades of treatment for Autism is specialized diets. Modifying diets of individuals with behavioral difficulties is a strategy that has been attempted since the very beginnings of Autism research and treatment. Groden and Baron (1991) state that;
Special diets and exclusion of certain foods from the diet have been recommended methods of treatment. Although certain nutrients do impact on the metabolic function of the central nervous system, there are no well-controlled studies that show that a particular nutrient (amino acid or vitamin) resulted in significant improvement of the overall function and behavior of these children (Groden and Baron, 1991, p. 146).
Herbert et al. (2002) made similar statements, noting the trend of gluten and casein free diets for individuals on the spectrum. They stated that there is some, “the vast majority of the evidence for the benefits of these diets derives from anecdotal reports or case studies (Herbert et al., 2002, p. 15). While there are some reports of improved behavior with the use of modified diets, there is no empirical data or evidence indicating so, beyond that of anecdotal reports. However, many fad diets continue to be used by many families, caregivers, and professionals in an attempt to address characteristic traits of Autism Spectrum Disorder. While specific diets can be medically necessary (i.e., Celiac Disease, Lactose-intolerance) and may in turn alleviate some pain and associated symptoms, they do not address or expand communication. Undeniably, diet-based interventions do nothing to improve the communicative repertoire of individuals with Autism.
Beginning in the 1950s following research by Bruno Bettelheim, a therapy titled parentectonomy was recommended as treatment for children and individuals with Autism. Parentectonomy involved separating families from their child with Autism for extended periods of time. The theory behind this therapy was that, “the problems in the mother-child relationship as causing autism” (Herbert et al., 2010, p. 4). Bettelheim was a large proponent of the time for using parentectonomy as treatment for ASD. He stated in his work The Empty Fortress that;
These children have stopped expecting any part of the environment to be need-satisfying, we have to provide for them an environment of potentially positive valence long before it wakes any positive interest. Only after they have been exposed to this for a long enough time do they begin to fathom that perhaps some other than the all-pervasive one they have known may be possible (Bettelheim, 1967, p. 93).
This notation exemplifies Bettelheim’s view that parents were directly to blame for their child’s diagnosis. He believed that children with behavioral difficulties, in order to progress, needed extended time away from their families and caregivers. He specifically advocated for a therapeutic environment that would meet the needs of the individual, such as the Orthogenic School where he conducted much of his research. His recommended mode of treatments and theoretical positions have certainly not stood the test of time and are no longer considered to be effective or ethical in nature. Additionally, beyond the unquestionable unethical nature of this practice, the use of parentectonomy does not involve any specific training to target and expand communication.
Pharmaceutical therapies in the form of psychotropic medications have been utilized for the treatment of behaviors, characteristic of Autism, since the 1960s and 1970s. Peter Tanguay, in a chapter from Autism: Diagnosis, Current Research, and Management, states, “occasional studies have claimed that various medications are of use in treating early infantile autism, but such studies are rare” (Tanguay, 1984, p. 80). In another chapter from the same text, Barbara Fish discussed the effects and benefits of appropriately prescribed and utilized mediation. She states, “what drugs do, when they are effective, is to make a child more receptive to educational and social therapies” (Fish, 1984, p. 109). Fish and Tanguay explain that the use of medication to regulate individuals with Autism common symptomatic behaviors can allow other therapies to further impact and benefit these individuals. Herbert et al. reiterated a similar perspective in their historical review of Autism treatments, stating, “several medications appeared to improve various symptoms associated with autism, thereby increasing individuals’ ability to benefit from educational and behavioral interventions” (Herbert et al., 2002, p. 23). Groden and Baron made similar statements in their research on the use of medication as well. They also noted that, “medication can inhibit or decrease negative behaviors or improve the organization and control of behavior. These children then will be more receptive to educational instructions and social interactions” (Groden and Baron, 1991, p. 144).
As demonstrated in these passages, appropriately prescribed and carefully used medication can be effective as a component in a treatment package for individuals on the spectrum. While appropriately prescribed medications may make a drastic impact in improving the medical and behavioral health with the Autism population, medication alone does not address many of the hallmark deficits of ASD. Medication as a sole treatment does not train these individuals to express their private events of pain, in order to access the medical treatment and health care they may require to maintain the highest quality of life. Medication in collaboration with a well-developed communication program can be a great treatment package to care for individuals on the Autism Spectrum.
Throughout the 1970s, and continuing into the 21st century, there has been a great push in school systems for speech therapy with students with Autism. These services have been used to expand and improve communication in students with ASD. Evans describes the educational movement that occurred in the United Kingdom stated that, “the early 1970s in the UK saw a major push to increase numbers of speech therapists employed by health authorities…” (Evans, 2013, p. 17). This increase in available speech services was mirrored in the United States, as well. “Language therapy must take place in a social milieu in which communication is reinforced, or there is no use in talking” (Groden & Baron, 1991, p. 129). Groden and Baron state the importance of integrating Speech Therapy into the client’s daily life and routines in order to further promote the child’s communicative repertoire. Groden and Baron explain that, “Speech therapists work on every level of language-development, from encouraging speech-like sounds in mute children with autism, to developing syntax in those with delayed language, to fine-tuning intonation and the ‘pragmatic’ aspects of speech in children with autism who speak in fully formed sentences” (Baron-Cohen & Bolton, 1993, p. 73). These descriptions display the importance and potential impact that Speech and Language Therapy can make in the lives and communication of individuals with Autism Spectrum Disorder. Speech Therapy continues to be an interval component of effective treatment for the communication deficits associated with ASD well into the 21st century. The use of Speech Therapy as treatment directly targets the hallmark communication deficits associated with ASD. If targeted specifically, Speech Therapy based services may promote the communicative repertoire of people with Autism in order to teach these individuals how to express their personal experiences of pain, sickness, and illness.
One controversial and potentially unethical treatment for Autism Spectrum Disorder that has been used intermittingly across decades of research is the use of Electric-Convulsive Therapy, commonly referred to as shock therapy, or ECT. Records indicate the use of ECT as early as the 1920s for symptoms characteristic of ASD. Aliza Bell in her historical publication on Autism indicates that many of the “interventions that were used during the 1970’s was quite controversial. For instance, in 1976, electric shock therapy became popular and was used as punishment” (Bell, 2017, p.4). The use of ECT as a punishment procedure is blatantly problematic and dangerous to the individual. While shock therapy remains a notably controversial form of therapy, it continues to be used as a rare form of treatment for individuals on the spectrum. Recent publications from the past few years have been released indicating ECT as effective procedure to reduce high and dangerous levels of severe self-injury and physical aggression (Wachtel et al., 2009). While studies have been conducted and published into the 21st century, the use of ECT remains highly controversial as a form of treatment (Ritvo et al., 1984, p. 108). The use of ECT as a treatment inherently is controversial and debatably unethical, it also as a treatment does not seek to improve or develop the communicative repertoire of people with ASD.
Also, developed in the 1970s, a communicative treatment known as Facilitated Communication was created by a teacher named Rosemary Crossley. The treatment involved the use of a letter board or keyboard and a “‘facilitator’ holding the disabled person’s hand, arm, or shoulder while the latter apparently types messages on the keyboard device” (Herbert et al., 2002, p. 8). The underpinning philosophy was that many individuals with ASD do not have the necessary neurological ability to use motor planning effectively to communicate. However, this therapy has been heavily evaluated, and not sustained the test of time and scientific scrutiny (Herbert et al., 2002). While Facilitated Communication intended to target the communication deficits of ASD, it failed to promote the individual’s independence with the communication system and in turn did not expand the communicative repertoire of people with Autism, in any capacity.
In 1987, O. Ivar Lovaas published one of the first behavioral therapy interventions for individuals with Autism Spectrum Disorder. His research from the University of California, Los Angeles emphasized principles of operant behavior and emphasized reinforcement as the main treatment (1987). Lovaas’ research directly applied principles of classical behaviorism to a new population and expanded an entire field of practice. Lovaas states in his article that, “High rates of aggressive and self-stimulatory behaviors were reduced by being ignored; by the use of time-out; by the shaping of alternate, more socially acceptable forms of behavior” (Lovaas, 1987, p. 5). Lovaas utilizes behavioral principles to target the problem behaviors characteristic of ASD and directly improve the communicative and other associated deficits of the diagnosis. Prior treatments have seldom sought to address the deficits by reinforcing a socially significant alternative behavior. While his research was groundbreaking and drastically altered the available treatment of ASD, Lovaas’ publication presents some ethical dilemmas as well. In his publication, it is referenced that aversive, and arguably abusive, tactics were occasionally used as treatment for severe problem behaviors. Lovaas explains that as a last option staff would use “a loud “no” or a slap on the thigh contingent upon the presence of the undesirable behavior” (p. 5) to in turn reduce the likelihood that this behavior would occur in the future.
Throughout the late 80s and into the 1990s, special education gained incredible traction as an influential and interval component of the treatment of Autism Spectrum Disorder. Several studies and reviews depict the growing importance of special education programs and the treatment of ASD. Baron-Cohen and Bolton state, “highly structured teaching programs have been claimed to produce the greatest gains” (Baron-Cohen & Bolton, 1993, p. 61). They explain that heavily involved and proactive teaching strategies have been shown to lead to the most significant educational success in the classroom setting. Additionally, Wing displays several important goals for best supporting students with ASD in the school setting and beyond. She states that “Education…is likely to be most successful if geared to aims that are realistic” (Wing, 1986, p. 151). She continues stating that the symptoms and diagnosis of ASD are not something that will ever be eradicated, and goals should be realistic to the individual needs of the student. Furthermore, many of the strategies utilized in Special Education programs seek to expand communication of people with Autism and other related developmental disabilities. While all strategies involved, may not be inherently communication based, the emphasis on expanding communication makes Special Education an important treatment option to developing the communicative repertoire of people with Autism Spectrum Disorder.
Wing continues and explains that the four main goals of education should prepare a child to be a member of a society, so that the child can successfully live in the natural home with their family or in another alternative community setting. Another important goal of education that Wing describes is to teach coping skills, so the individual has a repertoire of strategies for “coping with the world” (p. 151). The last two important goals of education she describes are to prepare individuals with ASD for employment and to increase the individuals understanding of the world. All of these referenced goals reiterate the importance of realistic expectations and goals that directly lead to the best quality of life for students with ASD across their lifespan.
Another important aspect of education to note is the use of integrated or inclusive classroom settings. Inclusive classrooms where both students with special needs and neurotypical students are allowed to learn have been a contested and debated element of educating children with special needs. Many argue for inclusive classrooms stating that it gives students with special needs an opportunity to learn social norms from their age equivalent peers. Whereas others have stated that integrating children with special needs into typical classrooms may restrict the opportunities of the students without disabilities. Baron-Cohen and Bolton state that, “it seems sensible to provide opportunities for children with autism to be among normal peers” (Baron-Cohen & Bolton, 1993, p. 66). Wing makes similar claims stating, “there has been much argument as to whether children do best if mixed with normal children, other kinds of handicapped children, or in special schools dealing only with autistic children” (Wing, 1986, p. 142). She goes onto state the importance of individualized programming and a structured environment to meet the needs of students with ASD. She explains that providing these level of serves for the spectrum of needs can be difficult, though not impossible in mainstream classrooms. Education continues to play an interval role in educating and shaping socially significant behaviors of individuals with Autism potentially for the workforce and in general life after school. Moreover, when used appropriately, integrated classroom settings may provide opportunities for individuals on the spectrum to have functional communicative responses modeled by peers. These modeled opportunities may help expand and further develop the communication of people with Autism.
In the 1990s, one cutting edge approach to Autism treatment was Holding Therapy. This therapy involved parents or caregivers literally hugging their child with Autism, refusing to let go, until the child “gives up resisting” (Cohen & Bolton, 1993, p. 72-72). Possible benefits described by Cohen and Bolton include “reports from parents that this leads to more normal social relationships and communication” (p. 73). However, Cohen and Bolton go on to note that there are notable, and seemingly obvious, risks associated with the therapy. Holding, especially for extended periods of time, can become extremely aversive and even potentially dangerous (p. 73). Since this time period, there have been reports of severe injury of clients and even instances of death with the use of Hold Therapy (Herbert, Sharp, Gaudiano, 2010; Cohen & Bolton, 1993). There are many blatantly potentially dangerous elements of this form of treatment. Additionally, it does not seek to expand the communicative repertoire of the Autism population and has contributed to injuries and even death of people with ASD and other disabilities.
The overall trajectory of the treatment for Autism Spectrum Disorder over this timeline has steadily moved towards the least-restrictive treatment possible and advocating for preventative measures that increase communicative skills and independence with daily living. As the diagnosis, symptoms, and associated characteristics of ASD have become more thoroughly understood, more effective, and proficient treatments and procedures have been developed and put in place. Specifically, communication is one of the most common deficits of ASD that is systematically targeted by intervention procedures. As the treatments for Autism have moved increasingly towards targeted functional communication this has allowed more specific training to communicate experiences of pain and sickness that the individual may endure in their lifetime.
Throughout several pieces of research, Applied Behavior Analysis is noted as one of, “the most promising approach(es)” (Groden and Baron citing Brown et al., 1976). Applied Behavior Analysis or ABA uses principles of behaviorism, assessing antecedents and consequences that maintain targeted behaviors. Interventions—based on empirical research—are utilized and closely monitored through individualized data collection systems. Many of the methods used in ABA specifically train and reinforce communicative responses. Applied Behavior Analysis has also been utilized to train communication for individuals with limited communicative repertoires, to express their feelings, experiences of pain, and other private events.
THEORETICAL UNDERPINNINGS
Over generations of research, related to Autism Spectrum Disorder, it has been widely recognized that individuals with ASD have deficits in the area of social communication. Applied Behavior Analysis has been a prevalent and effective therapeutic treatment that directly addresses the communication deficits, often associated with Autism. The field of Applied Behavior Analysis, or ABA, is “a science devoted to the understanding and improvement of human behavior” (Cooper et al., 2008, p. 3). ABA focuses on observable and measurable elements of behavior and defining these behaviors and related environmental variables in an objective way. Applied Behavior Analysis directly puts the scientific method into practice to make socially significant change and improve the lives of the individual. ABA has been utilized to teach and replace problem behaviors with socially acceptable replacement behaviors. Often these replacement behaviors are a form of communication, based on the identified function of the problem behavior (Cooper et al., 2008, p. 3).
Historically, researchers in early psychology believed that the intricacies of the mind were pertinent and relevant points of research for the field (Moore, 2011, pp. 449-450). However, John Watson proposed a school of thought known as Methodological Behaviorism. He suggested that thoughts, emotions, and other private events were behavior, however, he explained that they were not in the scope of study for Behaviorism. He emphasized that private events, thoughts, and emotions could not be viewed as behavior as they were not observable and measurable to the outside world. The emphasis of many early behaviorists was to only address and identify behaviors that were observable and measurable. Cooper et al explain that, “Watson argued that the proper subject matter for psychology was not states of mind or mental processes but observable behavior” (Cooper et al, 2008, p. 9). Meaning that emotions, feelings, thoughts, and other private events were not considered behavior, under Watson’s definition, as they were unable to be identified, monitored, and measured by an outside audience.
However, with B.F. Skinner’s research and publication of Verbal Behavior expanded the scope of what behaviorists considered behavior, founding a school of thought known as “Radical Behaviorism” (1974). Skinner stated, “what is inside the skin, and how do we know about it? The answer is, I believe, the heart of radical behaviorism” (Skinner, 1974, p. 218). This vantage drastically expanded the behavioral world and addressed an interval element of the human experience, since private events play a major role in behavior. In 1980, Jay Moore discusses private events and behaviorism in his publication, he states;
For radical behaviorism, private events are those events wherein individuals respond with respect to certain stimuli accessible to themselves alone…The responses that are made to those stimuli may themselves be public, i.e., observable by others, or they may be private, i.e., accessible only to the individual involved. Nonetheless, to paraphrase Skinner (1953), it need not be supposed that events taking place within the skin have any special properties for that reason alone…For radical behaviorism, then, one’s responses with respect to private stimuli are equally lawful and alike in kind to one’s responses with respect to public stimuli (Moore, 1980, p. 460).
Moore’s description of private events displays an important element of defining these discreet and private behaviors. He reiterates that private events as behaviors are not inherently different, other than that they are unobservable to others. This development drastically altered the course and study of behavior.
With the development of Skinner’s Radical Behaviorism, discrete behaviors—such as thoughts, feelings, emotions, pain, and the like—were included in the study of behavior. This inclusion of private events is significant because it allows all behavior to be examined, including private experiences such as pain, frustration, and injuries. Private events are significant, especially in respect to individuals on the Autism Spectrum, because many individuals with ASD have pronounced deficits in communication, that restrict their ability to describe and express the private events they directly experience. Limited communicative repertoires may inhibit people with ASD from effectively expressing their experiences. Understanding the theoretical and behavioral concepts related to verbal behavior is crucial to developing effective treatment to target these communicative responses and teaching individuals on the spectrum to communicate their private experiences of pain, illness, injury, and the like.
In addition to the development of Radical Behaviorism, Skinner differentiated specific components that make up all verbal behavior. Cooper et al. describe that, “Skinner defined verbal behavior by the function of the response, rather than by its form. Thus any response form can become verbal based on Skinner’s functional definition” (Cooper et al., 2008, p. 528). Meaning that Skinner emphasized the intent or purpose the communicative response served, rather than the form of the verbal interaction (i.e., phonemes, morphemes, grammar, semantics, etc.). With Skinner’s definitions of verbal behavior, there are six elements or operants of verbal behavior that are pertinent to the study of verbal behavior. These categories of verbal behavior include: “mand, tact, echoic, intraverbal, textual, and transcription” (Cooper, 2008, p. 529). The most relevant verbal operants to the expression of private events are manding, tacting, and intraverbal behaviors.
One of the most pertinent components of verbal behavior relating to the expression of private events is manding behavior. B.F. Skinner coined the term “mand” from demanding or commanding something from someone. Cooper et al. describe that, “the mand is a type of verbal operant in which a speaker asks for (or states, demands, implies, etc.) what he needs or wants” (Cooper et al., 2008, p. 530). Normon Peterson discusses that mands are unlike other forms of verbal behavior, in that, they are “controlled by an establishing operation,” meaning that the individual speaking engages in the behavior of communicating because they desire or want something (Normon Peterson, PhD, “Foxylearning An Introduction to Verbal Behavior”). Peterson also notes that, with regards to manding, the response must be verbal, however the form may be spoken, signed, written, or a gesture. The other noted characteristic of the mand is that the speaker benefits. In essence, the mand is a communicative response that organisms engage in, in order to get something that they want. Examples of manding behavior range from asking a barista for a cup of coffee, using American Sign Language (ASL) to ask a significant other to pass the remote to the TV, or even emailing a professor for help with a difficult assignment. All of these are examples of manding because they are verbal, or a form of communication, in order for the speaker to get something they are motivated by.
Manding behavior is directly related to communicating private events of pain, illness, and injury because it allows the individual to make a request from their caregiver. Manding is the specific verbal operant involved when a child asks for medicine when they have a headache, when someone requests cough syrup when they have a cough, or even inquiring about a check-up at the dentist when they have a toothache. All of these types of requests are related to manding and are a vital component of requesting help or medicine when an individual is not feeling well. As previously described, due to the communicative deficits of many individuals with ASD, manding or requesting medicine, to be taken to the doctor, or to have their temperature taken when they are feeling sick can be very difficult for many people with Autism. However, teaching individuals to mand for assistance and tact their experiences of pain is something that should certainly be targeted in treatment (Skinner, 1974).
The next verbal operant pertinent to communicating and expressing private events is tacting behavior. Cooper et al. define tacting as, “a type of verbal operant in which a speaker names things and actions that the speaker has direct contact with through any of the sense modes” (2008, p. 530). Peterson notes on Foxy Learning that the necessary characteristics of the tact is that the “controlling variable is a non-verbal stimulus” (Normon Peterson, PhD, “Foxylearning An Introduction to Verbal Behavior”). He indicates that the stimuli may be an object, event, or an element of an object or item. Peterson also adds with tacting that the listener benefits from this type of verbal behavior. Examples of tacting behavior include telling someone what new food or drink you are consuming, telling someone what street they are on when giving directions, or writing down the name of the song that is playing for someone. These are all examples of tacts because the speaker provides information that is of value to the listener.
Tacting is related to the expression of private events by the individual communicating and labeling specifically what physical suffering or pain they are enduring. It involves labeling and communicating exactly what private event of pain the individual is withstanding. Examples of tacting related to private events of pain being the person stating, “my knee hurts” or “I have a stomachache.” Identifying and labeling what specific part of the body and what sensation they are experiencing is vital to effectively communicating the private events of pain the person may be experiencing. Many individuals with ASD additionally struggle to label stimuli in the physical environment, let alone internal stimuli unseen by outside observers. Training individuals to tact private events presents a series of difficulties, since others cannot observe another’s private experiences, in order to support them in identifying and labeling these private experiences.
The last verbal operant pertaining to describing and expressing private events of illness is intraverbal behavior. Intraverbal behavior is what is often considered conversational speech. Cooper et al. describe it as, “a type of verbal operant in which a speaker differentially responds to the verbal behavior of others” (p. 531). Peterson describes specific characteristics related to intraverbal behavior noting that the controlling variable is another verbal stimulus and that there is “no point-to-point correspondence between stimulus and the response” (Peterson, Foxylearning an Introduction to Verbal Behavior). In other words, intraverbal behavior is a communicative response to another communicative response that is non-identical. Examples of intraverbal behavior include many of the conversations we have on a daily basis or waving at someone when they say “hi”. Intraverbal behavior is aligned with the expression of private events because individuals must be able to respond to the questions and statements of others in order to effectively and thoroughly communicate the private events they are bearing at that time. Intravebral behavior is equally as complex as other verbal operants but can be drastically more difficult to train due the complex and variable social nuances involved (Sundberg, 2011).
All three of the elementary verbal operants described above collectively make up the complex process of communicating pain, injuries, and other private events. Each of these verbal operants is an influential underpinning that is necessary to consider and deeply understand when evaluating an individual’s communicative repertoire, particularly in relation to expressing private events of pain, sickness, and even emotions.
APPLICATIONS
It is well established, through both current and historical research, that individuals with Autism Spectrum Disorder have pronounced deficits in communication. Many studies in the current body of research depict that these language limitations may put individuals with ASD at a greater risk of long-lasting health and medical concerns, over the course of their lifespan. Several approaches to address this dilemma have been proposed and assessed in research in Applied Behavior Analysis and other related fields. Some of the suggested measures include: teaching individuals with ASD to label and then communicate private events of pain and even emotion. Further research also assesses the risk for individual’s with ASD to suffer from injury and illness. Additionally, some studies and anecdotal reports propose the concept that many people with Autism have a heightened tolerance to pain, greater than that of the average individual. The current body of available research puts the potential medical and health risks of individuals with ASD into a contextual perspective in which to best support individuals with Autism.
Health and Medical Risks Associated with the Spectrum
A series of studies have been conducted related directly to Autism Spectrum Disorder and the risk of medical conditions and health disorders, due to the diagnosis. May et al. explain that, “people with intellectual disabilities disproportionately have more health problems than the general population. Further complicating the matter is that people with more severe disabilities often cannot verbalize health complications they are experiencing, which leads to health problems being undiagnosed and untreated” (May & Kennedy, 2010, p. 4). Shavelle and Strauss published findings, in the late 1990s, demonstrating that, “persons with autism are subject to increased mortality risk” (Shavelle & Strauss, 1998, p. 220). Carr et al. make comparable claims explaining that, “physical illness is very common in people with developmental disabilities. In fact, a number of studies have documented substantially higher rates of both chronic and acute medical conditions in people with developmental disabilities as compared to the general population” (Carr et al., 2007, p. 413). All of these findings perpetuate the potential risk of individuals with Autism Spectrum Disorder for health and medical problems, over the course of their lifetime. This is pertinent for practitioners, parents, families, teachers, and other caregivers to consider carefully when supporting individuals on the Autism Spectrum.
Research conducted by Cohen et al. extend these findings into the field of pediatric medicine and the population to infants and young children. Cohen et al. evaluated the effect of evidence-based pediatric pain assessments and make similar statements saying that, “pain is a frequent and vivid part of childhood, whether as part of routine care or a symptom of a chronic illness” (Cohen et al., 2019, p. 939). Cohen goes on to state that “untreated pain may have long-term negative and permanent repercussions on pain sensitivity, immune functioning, neurophysiology, attitudes, and health care behavior” (Cohen et al., 2019, p. 939-940). While Cohen’s statements do not directly correlate with Autism Spectrum Disorder, and related intellectual disabilities, the limited communicative repertoire of young children makes this demographic a strikingly similar population to the ASD population, in many respects.
Autism Spectrum Disorder and the Expression of Private Events
One common treatment proposed in several studies is to target the communicative deficits of the individual and teach the person to first identify the private experiences of pain, injury, or illness and then train them to communicate these experiences to a caregiver to receive appropriate medical treatment, as needed. Stocco et al. conducted research using “public accompaniments” as a strategy for training and reinforcing communication of private events (2014). The authors define public accompaniments as, “public events that correspond, to some degree, with private events and provide an opportunity for members of the verbal community to occasion and reinforce tacts of private events” (Stocco et al., 2014, p. 2). Stocco et al. provide the example of a child suffering the private event of a stomachache and the public accompaniment may be “a pale face” or the child leaning over. At this time the parent may comment or acknowledge this experience and say ‘It looks like your stomach hurts’ and the child may reply that their stomach does hurt. The parent would provide reinforcement by offering options to ease the child’s pain. The use of public accompaniments is a viable strategy to train individuals on the spectrum to identify their own private experiences and in turn access appropriate medical treatment, as needed.
However, another study by Nader et al. proposes a conflicting perspective to Stocco’s suggestion of public accompaniments with pain. Nader et al. state that;
Given this lack of social responsiveness and language impairment, the expression of pain would also likely be altered, contributing to perceptions of atypical pain experience by parents or other caregivers. For example, if the child does not cry or seek comfort from a parent after an injury, it could be inferred that the child is not experiencing pain…Even if the children were to approach their parents, they would have difficulty verbally communicating their pain experience. They also have difficulties in the use of body gestures and understanding the language of others. Therefore, it is not surprising that these children do not seem to express pain or readily seek comfort from others when in distress (Nader et al., 2004, p. 89).
Nader’s description of the limited communication and restricted emotional affect in the Autism population presents a conflicting standpoint to that of Stocco et al. Since the research by Stocco et al. emphasized the outward signs—or as they described public accompaniments—as a useful strategy to train individuals with ASD to tact and communicate private events. However, the research by Stocco et al. does not address the reality that often individuals with ASD may not engage in outward expressions of these private events, as Nader et al (2004) noted.
Another study by Carr et al. (2007) evaluated the role that illness and pain may play in increasing problem behaviors in individuals with ASD and other related developmental disabilities (Carr et al., 2007, p. 413). The authors note that assessment of pain is often “difficult since many individuals have minimal verbal communication skills” (p. 413). Similarly, to the research conducted by Stocco et al., Carr et al. recommended utilizing a Functional Communication Training procedure to teach individuals to mand for medication, tact their pain, and generally communicate how they are “feeling” while sick. The researchers state that;
A functional communication approach could…teach communicative phrases relevant to obtaining attention or tangibles, thereby further helping the individual to cope with his/her illness. Perhaps, most critically, however, one might focus on teaching the individual to indicate (if not through speech, then through picture or sign language communication) the body part that hurts (e.g., ‘‘tummy sick’’), thereby triggering appropriate palliative and supportive behaviors on the part of others. Systematic programs for teaching individuals to communicate complex ‘‘feeling’’ states have been available in the literature for some time (Lovaas, 1981)” (Carr et al., 2007, p. 421).
The research by Carr et al. reiterates the importance of closely monitoring individuals with ASD for potential symptoms of pain and seizing these moments as opportunities to teach them how to communicate their needs at that time. This approach as described by Carr et al., closely replicates the use of public accompaniments as utilized in the research by Stocco et al.
Schmick et al. also conducted similar research pertaining to tact training of private events. Their research focused on three male teenagers on the spectrum and teaching these individuals to identify the private events of others based off of video-based scenarios (Schmick et al., 2018). Their research has the same intent and focus; however, they trained the individual to identify others’ private experiences rather than identify their own personal private events. This study discusses the use of relational training, including both derived and trained relations, related to identifying private events as well. Schmick et al. describe that many individuals with ASD experience difficulties labeling and identifying emotions in themselves and in others. While their work does not directly train the identification of their own emotional experiences, the use of multiple examplars and application of Relational Frame Theory may promote generalization of the emotional identification repertoire of these individuals (Schmick et al., 2018, p. 400). Their research presents a variety of training materials to the participants in order to promote generalization. In other words, the participants may be trained that someone is hurt by identifying a video where someone stubs their toe, scrapes their knee on a skateboard, or experiences a headache. Training that all of these different experiences all represent the same experience of hurt, promotes generalization and may in turn teach the individual to recognize the experience in themselves. The research conducted by Schmick et al. notes that the use of multiple-exemplar training can be a viable and impactful treatment option to promote both to identify the private events of others as well as generalize these skills to novel emotions and experiences.
McHugh et al. also utilized multiple-exemplar training as a strategy to train and promote generalization of emotional recognition in three young children. The research conducted by McHugh et al. employed video modeling as a means to train 3 individuals with Autism to, “tact situation-based emotions” (McHugh et al., 2010, p. 1). Similarly, to Schmick et al., McHugh et al. used multiple-examplars to further promote generalization to new or novel videos. In this research, they specifically targeted the children to identify the emotions of happiness, sadness, anger, and fear in the individuals in the videos. The research was conducted by first training on 1 emotion and, then utilizing a multiple-baseline design, extending the study by then training on the following emotion. The findings in this study corroborate the results from research by Schmick et al., indicating that video modeling and the use of multiple examplars is a viable training option to teaching individuals to recognize and label (i.e., tact) the emotions of others. While this study does not directly target and train individuals to recognize their own personal experiences of emotion, the use of multiple-examplars promotes generalization and may in turn lead to identification of private experiences of happiness, sadness, anger, and fear that could then be extended to pain or sickness.
Pain Assessments as Tools to Support Individuals with Autism
A slew of studies indicate the vital need for effective assessment tools to identify and then treat the pain and illness that individuals with Autism Spectrum Disorder will experience in their lifetime. As demonstrated through a range of research, the communicative deficits of ASD limit the repertoire in which many of these individuals may expressively relay their private events of pain. It is the responsibility of the medical professional, caregiver, parent, and other involved parties to utilize individualized and systematic assessment tools to evaluate the current health and medical state of the individual they are supporting. The span of the research related to medical assessment tools ranges from qualitative to quantitative assessments, including reports from parents to even assessing non-verbal cues of the individual. While medical assessments are not inherently behavior analytic, in nature, the use of these assessment tools may provide a valuable aid in supporting individuals on the Autism Spectrum. Especially in communicating private events of pain or training caregivers to recognize the nonverbal signs associated with private experiences of pain linked to the Autism population.
Research conducted by Elizabeth Ely et al., discussed options for allowing individuals with ASD to communicate their pain, in order to help manage their injury. Ely at al examined how “the core deficits of ASD may interfere with this population’s ability to effectively use traditional pain assessment tools” (Ely et al., 2016, p. 53). Ely et al. described individualized communication methods for children with Autism to share their experiences with pain, and “identify vocabularies that hold meaning with respect to pain to better understand pain from their context” (Ely et al., 2016, p. 53). Unlike the previous research mentioned—by Stocco et al. (2014), Carr et al. (2007), and Schmick et al. (2018)—Ely did not design or produce a training program to facilitate the communication of pain, rather Ely et al. developed a series of questionnaires and emphasized an individualized approach to pain management (Ely et al., 2016, p. 53). Ely et al. also prioritized parent involvement saying it, “was essential, both in helping interpret the child’s needs and providing trusted support” (Ely et al., 2016, p. 53). Parents and their role are not even referenced in the previous communication-based studies. Undoubtedly, parents become the experts on their children and are often keen at identifying their child’s pain.
There are several aspects of the research produced by Ely et al. that are beneficial to note for parents, caregivers, medical professionals, and other practitioners who support individuals on the spectrum. One helpful aspect of the work is the carefully curated questions that may help guide individuals with ASD to answer more accurately about the experiences of pain and injury that they may be experiencing. Noting these guided questions is useful to future practitioners and parents, alike, because it allows them to utilize the framework of these questions to support individuals with ASD. Some of the questions include, “can you draw a picture of some pain or hurt you have had?…Can you show me/mommy/daddy what hurts?…When you feel hurt or pain what do you do to make yourself feel better?” (Ely et al., 2015, p. 55). Using questions similar to this and modifying wording and language, utilizing visual aids and gestures, and collaborating with parents and other caregivers are all advantageous techniques to ensure that the needs of the individual are best being met.
Experiences of Pain in Autism
As noted previously, many published pieces indicate that individuals with ASD, or other related developmental disabilities, experience medical and health related issues at an increased rate than the general population. However, some studies suggest that these individuals with Autism may also experience pain differently than someone without Autism. While these findings may lean slightly out of the scope of Applied Behavior Analysis, and into the medical field, it is vital for future Behavior Analysts to be privy to these findings as practitioners supporting the Autism population. Clarke (2015) described that, “altered pain thresholds are a recognized feature of…Autism Spectrum Disorders (ASD)” (Clarke, 2015, p. 2). He continues and explains that it is common for individuals with ASD to have “unusual ways” of experiencing pain (p. 2). He provides an anecdotal example of an individual experiencing pain, “denying pain but describing such noxious stimuli as dental extraction as ‘discomfort’” (p. 2). Symons et al. (2009) make similar statements in their research stating, “a long standing but untested clinical impression about individuals with intellectual disabilities who self-injure is that they are insensitive to pain and/or the perception of pain is diminished” (Symons, 2009, pp. 521-522). Symons et al. elaborate indicating that these hypotheses are founded on observations of individuals with ASD who engage in severe and dangerous self-injurious behaviors, that the average person would find excruciatingly painful (p. 522). Nader et al. also discuss in their research that, “children with autism have been described as having ‘reduced pain sensitivity’, ‘not feeling pain as intensely as others,’ having an ‘indifference to pain’, and having a ‘high threshold for pain’ Nader et al., 2004, p. 88). All of these researchers demonstrate that many past studies and findings have linked heightened pain sensitivity with the Autism population.
However, many published findings have contrasted greatly with these opinions stating that it is unfounded, inaccurate, and speculative that individuals with Autism Spectrum Disorder have a differing threshold of pain than the general population. Nader et al. (2004) explain that, “remarkably, most of these reports of altered pain sensation have been based on anecdotal observations and clinical impressions” (Nader et al., 2004, p. 88). Nader et al. continue and emphasize the need for further empirical evidence to support these claims of pain insensitivity in the ASD population. In the research conducted by Nader et al., they examined 21 young children’s pain reaction to a medical procedure of venipuncture (p. 88). The researchers videotaped the procedure for each child and used the child’s facial activity as a means of objective pain measurement. Their findings indicate that, “children with autism should be viewed as being as reactive to painful stimuli as children without autism and do not support beliefs about pain insensitivity in children with autism” (Nader et al., 2004, p. 96). Nader et al. also illuminate that children with ASD “display a substantial facial pain reaction” to painful stimuli, such as a needle in this research study (p. 94). These findings contrast considerably from the claims that people with Autism do not experience pain in a similar manner to individuals without Autism.
Symons et al. published research in 2009 that corroborates the same findings as Nader et al. In the research conducted by Symons et al., they utilized a pain assessment checklist to compare the non-verbal signs of pain in individuals with developmental disabilities, who also exhibit frequent and recurring episodes of self-injurious behaviors. The researchers utilized this pain scale checklist to monitor non-verbal signs of pain and distress in individuals with intellectual or developmental disabilities. Their results, similarly to Nader et al., show that their findings, “are not consistent with a model of pain insensitivity for individuals with self-injury” (Symons et al., 2009, p. 525). They divulge that their results indicate that individuals who exhibit severe self-injury also have a range of associated non-verbal signs of pain. Symon’s findings reiterate and indicate that individuals with ASD and developmental disabilities do indeed experience pain, similarly to the general population. These findings directly contrast with the proposed concept that individuals with ASD do not experience pain comparably to people without Autism Spectrum Disorder.
Clarke (2015) further demonstrates these findings and emphasizes the significance of future empirical research on the topic of pain sensitivity in the Autism population (Clarke, 2015, p. 2). Clarke also states that it is crucial to be mindful of the potentially limited vocabulary often associated with ASD. He elaborates that, “when enquiring about pain, it may be useful to be mindful of a wider vocabulary, enquiring about ‘discomfort’, ‘anxiety’, and so forth” (p. 2). Individuals may relay severe and painful experiences in more understated terms, not because the pain is not severe, but simply because they do not have the language to more accurately and precisely describe their painful experience. He denotes that it is of upmost importance as a practitioner to be cognizant of the linguistic and communicative repertoire of individuals on the spectrum in order to best identify and treat the pain these individuals are enduring.
ETHICAL CONSIDERATIONS
In the field of Applied Behavior Analysis, the presiding code relating to ethics and ethical decision making is determined by the Professional and Ethical Compliance Code for Behavior Analysts, often referred to as the PECC(BACB 2014). The PECC is a collection of codes that guide Board Certified Behavior Analysts’ practice with clients, families, and other related parties as well as treatment development and the procedures used that directly impact the lives of clients. As discussed throughout the development of this research, Applied Behavior Analysis can systematically train and target many of the communicative deficits of ASD, in order to help this population access medical treatment as needed. With the described topic in mind, there are many ethical considerations that must be considered related to the PECC. Some of these codes include; 1.02 Boundaries of Competence, 3.02 Medical Consultation, 4.03 Individualized Behavior-Change Programs (BACB, 2014, pp. 2-13).
The first referenced code related to the topic at hand is 1.02 Boundaries of Competence. With this specific code the PECC outlines that practicing BCBAs must “provide services, teach, or conduct research only within the boundaries of their competence, defined as being commensurate with their education, training, and supervised experience” (2014, p. 4). Remaining within the boundary of competence, in regard to health and medical concerns, is especially pertinent since Board Certified Behavior Analysts must monitor and teach many of our consumers with ASD to communicate their experiences of pain, however BCBAs are not credentialed to treat these medical concerns and must collaborate with responsible medical experts. As professionals it is important to clearly distinguish the boundaries of the field and thoroughly recognize when collaboration with other professionals is necessitated.
One of the most important codes related to this specific topic is 3.02 Medical Consultation. When Behavior Analysts are undergoing assessment procedures to identify function and potential intervention procedures to treat problem behavior of consumers, it is specifically outlined in the PECC that any potential medical factors should be carefully considered. As discussed throughout this research, individuals with ASD and other related developmental disabilities have more prevalent health and medical concerns, this phenomenon is essential to consider as a practicing BCBA. The PECC describes that, “Behavior analysts recommend seeking a medical consultation if there is any reasonable possibility that a referred behavior is influenced by medical or biological variables” (p. 11). The PECC does not outline further what constitutes a reasonable possibility, but carefully examining all environmental and potential biological factors throughout the assessment process is pertinent to the greatest benefit to the consumer.
Another code relevant to this topic is 4.03 Individualized Behavior-Change Programs. According to the PECC, “Behavior analysts must tailor behavior-change programs to the unique behaviors, environmental variables, assessment results, and goals of each client” (p. 12). This specific code is apposite to this current topic, because it is necessary for the practicing BCBA to design an intervention that meets the diverse and specific behavioral needs and supports for the clients that they serve. As discussed throughout this research, many individuals with ASD and other related developmental disabilities have deficits in communication and additionally are more likely to experience pain, injury, and other medical difficulties over the course of their lifespan. With this information in mind, it is the responsibility of the ethical Behavior Analyst to design specific programming to monitor and train the supported consumers to access medical treatment as necessary. This support may be targeted through specific checklists for caregivers and staff related to diet, bowel movements, sleep, and the like or dependent on the individual may take place in the form of a specifically designed Functional Communication Training procedure. It is also important for the ethical Behavior Analysts to be extremely cautious when spontaneous problem behaviors arise. Often these seemingly sporadic behaviors may be tied directly to pain and sickness. These important aspects of this topic should be considered carefully and incorporated appropriately into the consumer’s ongoing treatment plan.
While in an ideal world with bountiful resources, working closely with medical professionals throughout the Functional Behavior Assessment (FBA) and intervention process would be best practice undoubtedly. However, there are notable and apparent constraints that must be considered for real life application of these ethical standards. Some of these possible constraints include limited time and financial resources, as well lengthy waitlists to see appropriate medical professionals. When conducting an FBA and developing an intervention for a new consumer there is often an allotted and restricted amount of time and hours from the funding source. Meaning that the FBA must be conducted and completed in a timely manner. Additionally, families and caregivers are frequently eager and even desperate to intervene and find a resolution to the problem behaviors the consumer may be demonstrating. While it is most certainly best practice to conduct a thorough medical examination firstly, to rule out medically induced problem behaviors, this may not always be feasible. Considering a client who engages in severe physical aggression, property destruction, or self-injury their family and support system are sometimes in dire need of effective treatment and it may require an intervention be put in place, prior to a thorough medical examination. It is even possible, that due to the severity of the problem behaviors that a medical professional may deny the examination altogether due to safety precautions. Furthermore, many medical professionals and specialists have extended waitlists, sometimes upwards of several weeks and months. It is not ethically responsible to limit behavior analytic support when problem behaviors may place caregivers in extremely dangerous situations. Behavior Analysts may put placed into difficult situations, as demonstrated by this example, where a decision to support the individual and maintain client and caregiver safety may be placed above another aspect of the Ethics Code. Situations such as these must be carefully considered, in order to determine what the best course of action may be.
FUTURE DIRECTIONS
The current supports available in the field of Applied Behavior Analysis involves specific procedures to train individuals on the Autism Spectrum to identify and communicate their private events of pain or emotions as well as using careful monitoring systems for parents and caregivers. While these supports have been tested and demonstrated through systematic research to be effective interventions, there are still gaps in these treatments that may be addressed through future treatment procedures and developments. There are many directions that these treatments may go in the future, but one of the greatest potential developments for this area of the field lies with continuing developments in technology. Two predominate areas available in the current research, that show great promise for this area of the field, include the use of Virtual Reality and robotics. These two uses of technology have great potential as applied treatments to address and further develop the communicative repertories of many individuals with ASD and allow these individuals to access the appropriate medical treatment when they experience pain, sickness, or injury.
The use of Virtual Reality (VR) as a treatment option to train individuals with ASD to label and express private events of pain, injury, and even emotion is a technology that is presently being developed and tested in current research. In the past decade the use of VR as a treatment option has been increasingly prevalent, specifically in the arena of Autism research. Didehbani et al. (2016) conducted research on the use of Virtual Reality as a social skills training tool, Ke and Im (2013) assessed the impact VR could have on communication and social interaction of individuals with high-functioning Autism, and Parsons and Cobb (2011) evaluated previously published research and the use of Virtual Reality as a training tool for individuals with ASD. All of these pieces of research provide evidence that Virtual Reality can be an effective teaching and training tool for individuals on the spectrum.
Each research noted why the technology of Virtual Reality is a viable technology for treatment for individuals on the spectrum. Parsons and Cobb explain that, “VR is argued to offer particular benefits for children on the autism spectrum, chiefly because it can offer simulations of authentic real-world situations in a carefully controlled and safe environment” (Parsons & Cobb, 2011, p. 355). They elaborate noting that VR can be implemented as a technology to train for social and life skills, because many of the variable aspects of the natural environment are removed with the use of this technology. Additionally, Didehbani et al. explain that VR is a more advantageous treatment option compared to many traditional social skills interventions. They explain that, “First, it [VR] can produce safe, unlimited, and commonly encountered day-to-day contexts to practice social scenarios” (Didehbani et al., 2016, p. 704). They note that VR has been demonstrated as an effective technology to teach social skills such as conversations with peers and even finding a classmate to sit with at lunch. They emphasize that the use of VR as a training tool may also help eliminate or reduce anxiety or social discomfort that may be present if the training were conducted in real time. Providing these trainings via VR can allow the individual to experience these social situations and rehearse appropriate responses repeatedly to gain the target skills. VR removes the unpredictability that exists in naturally occurring social situations and can promote the individual to generalize these newly developed skill sets into real life situations (p. 704).
While these researchers did not specifically target communication-deficits related to pain and injury, communication and social skills are prevalent targets with the use of Virtual Reality training. Future research may employ VR as a means to expose individuals with ASD to private experiences and provide training on how to express these experiences to receive appropriate treatment and care. For instance, an individual with ASD could be shown an experience—through Virtual Reality—of riding a skateboard and falling off and skinning their knee. The subsequent steps could involve prompting the individual to label the experience as painful and then request First-Aid from a parent or other caregiver. These scenarios can be varied and systematically modified to promote generalization into real world experiences, as they naturally occur. Using VR as a training tool for individuals to express private experiences of emotions and even pain and injury allows massed practice and opportunities outside of occurrences as they naturally occur.
One outstanding and notable deficit in the presented research related to Virtual Reality as a training procedure for individuals on the Autism Spectrum is that research has only targeted its use with higher functioning individuals. As research in this niche technology is expanded, individuals of all communicative and cognitive abilities should be incorporated. Including individuals on the spectrum with limited communicative repertoires is of upmost importance, specifically with the topic at hand, because VR technology could allow these individuals an opportunity to target communication. Furthermore, VR could allow individuals with ASD with restricted communication to experience private events virtually and then be trained to express what they experienced. Generalization of this skill set could be systematically trained and programmed for accordingly in order to promote the use of this skill in the natural environment. The use of Virtual Reality has great potential to benefit many individuals with ASD in the foreseeable future, however the technology must continue to further develop in order to benefit the diverse population represented on the Autism Spectrum.
Another technology that has been demonstrated in some aspects of current research as a promising treatment and support option to for the Autism population is the use of robotics. Current research has displayed the use of robotic technology to aid people on the spectrum in social situations (Feil-Seifer & Maja J. Matarć, 2009), other studies have demonstrated its effectiveness as a tool to teach emotional expression and recognition (Pioggia et al., 2005), and other research has taught individuals on the spectrum to increase and maintain appropriate eye contact (Goldsmith & LeBlanc, 2005). The current scope of research related to robotics and the treatment of ASD has been limited predominately to social skills and training these skill sets in predictable and repeated practice with a therapeutic robot. The research has demonstrated its effectiveness because it removes any unnecessary aspects that may interfere with training. The research is then systematically generalized to appropriate social settings in real time, similarly to the use of Virtual Reality technology.
While the current body of available research does not demonstrate the use of robotics related to the expression of private events of pain or injury specifically, it is not a far reach to utilize this technology as a means to train individuals to recognize and express their private events of pain or even potentially design a piece of technology that can closely monitor the individual’s vital signs, temperature, affect, nutritional intake, gastrointestinal functioning, and other related health and medical concerns that would be pertinent to monitor to ensure the child is healthy and safe. A piece of technology that could identify, monitor, and then report these symptoms would undoubtedly result in a significant increase in the well-being of many individuals on the Autism Spectrum. This technology could easily be paired with a Functional Communication Training program that takes the report generated by the robotic technology and a therapist prompts the individual to communicate the painful experience. Examples of this include, but are not limited to, the robot noting the individual’s blood sugar is low and the therapist prompts the individual to express feelings of hunger. The assistive technology could notify a parent that their child is feeling hot and feverish, the child could then be prompted to use their Augmentative Communication Device to express feelings of warmth or fever. The use of this technology could provide ongoing and detailed monitoring that would effectively address both the communication deficits and potential medical concerns associated with ASD.
While the current technology is not available to provide this level of service, technology is increasingly more available and specific to the needs of a variety of consumers. This type of robotic technology could easily be adapted to a slew of high-needs populations including infants, the elderly, or the terminally ill. Having a robotic technology that can closely monitor these individuals on an ongoing basis and then prompt a communicative response would enable all of these populations to access the necessary treatments and medical care required to maintain their well-being.
Concluding Remarks
The field of Applied Behavior Analysis has targeted a variety of behaviors, diagnoses, populations, and the like over decades of research. Many of the specific strategies used in ABA target and treat the communicative deficits often characteristic of individuals on the spectrum. As research has depicted many of these individuals, specifically those individuals with limited communicative repertoires, often have difficulties expressing private events of pain and injury and may suffer a heightened rate of injury and illness over the course of their lifetime because of their limited communicative repertoires. Currently, in the field of ABA, Functional Communication Training and monitoring systems have been designed to teach individuals on the spectrum to express how they are feeling, as well as allow caregivers to monitor non-verbal signs that may display how they are feeling. As specific technologies are further developed and introduced to this population—potentially Virtual Reality and robotics—many of the gaps in available supports and interventions for this population, as well as others, may be reduced. It is pertinent to Behavior Analysts, special education teachers, parents, and other caregivers to be cognizant of how the communication deficits associated with Autism Spectrum Disorder may put this population at a heightened risk for medical and health concerns. These caregivers should in turn monitor closely and utilize available technologies to promote communicative repertoires to express private events of pain, sickness, and injury in order to access appropriate medical care.
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