Tuesday, January 24, 2012

Research Proposal - Effects of Controlled Multisensory Stimulation in Autism Spectrum Disorder


 
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Effects of Controlled Multisensory Stimulation in Autism Spectrum Disorder


            Behavioral disorders have been the concern of psychologists and psychiatrists for decades. Many disorders have been discovered through intensive research throughout the years. One of which was the first description and identification of autism by Leo Kanner in 1944 (Harvard Mental Health Letter, 1997). Autism is not a disease but a dysfunction in the development of the brain, specifically a developmental disability that typically involves delays and impairment in social skills, language, and behavior (Adams et al, 2004). Inspired by psychoanalytic theory which was prevalent during the 1940s, research on autism had grown since Kanner published a description of early infantile autism in 1943 (Matson et al, 1996). Today, autism is one of the most researched behavioral disorders with the current prevalence of 60 per 10,000 people (Prior, 2003). One of the issues associated with the disorder throughout the years since is treatment. Since the 1960s, researchers have been trying to develop effective treatments on autism. Yet, even though many techniques have been discovered to modify target behaviors, there is still a need for continued research in this area (Pope, 1999). Research should still verify the effectiveness and safety of the new techniques. Currently, it can be said that one of interventions that require further investigation is the multi-sensory stimulation approach to behavioral disorders such as autism. A multi-sensory therapy such as the ‘snoezelen’ has been around since 1966, basically as a relaxant environment for the elderly. The approach is now being used for behavioral disorders but extensive research is still needed to support its effectiveness (Chung, Lai and Chung, 2004). Thus, the focus of this study is to investigate the use of snoezelen as a treatment for people with autism. The aim is to discover the effect of a controlled multi-sensory stimulation such as snoezelen on the targeted behaviors in the autism spectrum disorder.

Background


Definition of Autism


Commonly, autism is characterized by qualitative impairments in social interaction and communication (reciprocal social behavior and language development), and by the presence of restricted and repetitive behavior (American Psychiatric Association, 1994; World Health Organisation, 1993). It is a developmental disability that typically involves delays and impairment in social skills, language, and behavior (Adams et al, 2004). In other terms, people with autism have difficulties in social relationships, social communication and imagination/rigidity of thought (Adams et al, 2004). It literally means living in terms of the self. For instance, to an ordinary observer, an autistic child may seem to be self-centered as the child shows little reaction to the outside world. Ironically, the autistic child is in a state with little awareness of what being a self means (Tustin, 1995).         

Apart from its common description, autism is actually a spectrum disorder that encompasses a variety of forms and types. Autistic Spectrum Disorder (ASD) is the term that refers to a broad definition of autism including the classical form of the disorder as well as closely related disabilities that share many of the core characteristics (ERIC Development Team, 1999). Its diagnoses and classifications include: Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), which refers to a collection of features that resemble autism but may not be as severe or extensive; Rett's syndrome, which affects girls and is a genetic disorder with hard neurological signs, including seizures, that become more apparent with age; Asperger syndrome, which refers to individuals with autistic characteristics but relatively intact language abilities, and; Childhood Disintegrative Disorder, which refers to children whose development appears normal for the first few years, but then regresses with the loss of speech and other skills until the characteristics of autism are conspicuous.

Behavioral Description

Autism affects people differently. Some children and adults with autism may have speech, while others may have little or no speech.  Less severe cases may be diagnosed with Pervasive Developmental Disorder (PDD) or with Asperger’s Syndrome where affected children typically have normal speech, but have many “autistic” social and behavioral problems (Adams et al, 2004). The co-occurring conditions that might manifest in the disorder include: mental retardation; seizures; chronic constipations or diarrhea; sleep problems; pica; low muscle tone; and sensory sensitivities (Adams et al, 2004).  Nonetheless, despite the abnormal conditions, autistic children and adults are capable of acting normally e.g. making eye contact (APA, 1994). They are more than capable of expressing themselves than ordinary people by showing affection, smiling, laughing and demonstrating other emotions. However, expressions may come in varying degrees because they have difficulties in verbal and non-verbal communications, social interactions, and leisure and play (Pope, 1999). Similar to the responses of behaviorally normal people, children and adults with autism may respond either negatively or positively to the environment (APA, 1994). For instance, they can: exhibit severe mental retardation or be extremely gifted in their intellectual and academic accomplishments; prefer isolation and tend to withdraw from social contact, or show high levels of affection and enjoyment in social situations; and some appear lethargic and slow to respond, while others are very active and seem to interact constantly with preferred aspects of their environment (ERIC Development Team, 1999, p.2).

Cause of Autism


            The onset of autism usually occurs during pregnancy or the first three years of life – basically children are mostly affected. Until now, a specific cause for autism remains unknown (The National Institute of Neurological Disorder and Stroke, 1999). However, continuous research is being conducted to determine the origin of autism. Researchers have different views regarding the cause of autism. Some believe that genes and environmental factors i.e. viruses or chemicals contribute to the disorder. They observed that abnormalities in affiliative behavior of other individuals are linked to the dysfunction of serotonin, neuropeptides, oxytocin and vasopressin (Brasic, 2004). Symptoms of autism are also said to be aggravated by the consumption of phenol-rich foods such as dairy products, corn, sugar, apples and bananas (Brasic, 2004). On the other hand, other researchers believe that autism is related with abnormalities in the brain, particularly: the distinguishing characteristic of the brain size of an autistic, wherein the cerebellum is larger and the corpus callosum is smaller; the noticeable reduction in the number of Purkinje cells; and the enlarged amygdala and the hippocampus in an autistic brain (Taverna, 1998; Pope, 1999). Generally, it is accepted that it is caused by abnormalities in brain structure or function but little evidences are presented. Further investigation and more evidences are needed to determine the cause of autism (Taverna, 1998; Pope, 1999).

Medications and Interventions

It is accepted that there is no cure for autism just as there is no clarifications about its origin. However, as autistic individuals suffer other disorders such as depression and seizures, drugs can be beneficial to remedy these secondary problems. For instance, some benefits are derived from taking butyrophenones by controlling the most severe forms of aggressive and self-destructive behavior. This medication, however does not resolve psychosis. Aggression, irritability and agitation common among autistic may be regulated by Ziprasidone. Hyperactivity may be lessened with methylphenidate therapy (Brasic, 2004). On the other hand, therapies can be used to modify some autistic behaviors. Therapies being used include: applied behavior analysis; sensory integration; speech therapy; occupational therapy; physical therapy; and auditory interventions (Adams et al, 2004). The focus of therapy efforts should be to develop functional skills that will be of immediate and ongoing value in the context of daily living (ERIC Development Team, 1999). This typically includes strategies for enhancing a person's ability to communicate, to understand language, and to get along socially in complex home, school, work, and community settings (ERIC Development Team, 1999).
Multi-sensory Stimulation
            People with autism are affected with many personality and behavior problems. Their disability often prevents them from expressing and fulfilling many needs in an appropriate way. One example is their failure to fulfill the human need of stimulation (Chan et al, 2002). Fortunately, through multi-sensory stimulation, their need for stimulation or leisure can be fulfilled. This is based on the belief that people with developmental disability can benefit from sensory input (Hutchinson, 1994). One type and perhaps the most popular approach in multi-sensory stimulation is the use of multi-sensory environment – “a quiet room with a selection of sensory equipment arranged to stimulate the primary senses, without need for intellectual or structured responses and relying on immediate pleasurable sensation” (Leng et al, 2003). It was first for children with learning disabilities, and then applied to adults with profound and multiple learning disabilities and with dementia (Ashbey et al, 1995; Leng et al, 2003). Popularly known as the ‘snoelezen’ – based on two Dutch words meaning "to sniff" and "to doze” - the therapy stimulates the primary senses of touch, hearing, sight, smell, and taste by creating a relaxing ambience through the combination of soft music, aromatherapy, textured objects, colored lighting effects, and favorite foods (Chitsey, Haight and Jones, 2002; De et al, 2004). Basically, the ‘snoezelen’ can act as a sanctuary because it places the resident in a failure-free environment with no rules and gives him/her control over interactions within the environment (De et al, 2004). Children with autism may seek sensory stimulation from the environment in order to calm, or self-regulate, their nervous systems (Grandin, 1995). Overall, attributes included in a multi-sensory environment or a snoezelen that might benefit children with autism are: opportunity for affective/emotional development; stimulation for all senses; relaxation; facilitation of therapy; enhancement of communication; minimization of challenging behavior; development of self-determination; and Opportunity for social interaction with non-disabled children/families (Pagliano, 1999).

Statement of the Problem


            The use of snoezelen flourished since its introduction in Netherlands in the 1980s. Although multi-sensory stimulation was first introduced in America in the 60s, the introduction of snoezelen gave children with disabilities a chance to fulfill their need for stimulation and relaxation. The therapy can be a potentially useful intervention for children with autism as stimulation may calm them and may prevent them from resorting to self-injury, anger, or repetitive behavior as a substitute. Findings from previous studies show the many benefits that ‘snoezelen’ can give, basically includes all the attributes mentioned earlier (Pagliano, 1999). However, the effects of ‘snoezelen’ on autism are still less explored, at least in terms of the Autistic Spectrum Disorder’s level. For instance, the effects of the therapy on the negative behavior of children with severe autism still lack comparison with the effects of the therapy on the negative behavior of children with Asperger syndrome or other types of ASD. Most findings were based on a generalized hypothesis that ‘snoezelen’ positively affects the behavior of children or adults with autism or any developmental disabilities. Obviously, there is a need to compare the stimulating effects of snoezelen on each types of ASD. By doing so would open new opportunities to discover new facts about the effects of MSE on autistic behavior.

The following research questions will help specify the problem:

1.         What are the effects of snoezelen on the behavior of children diagnosed with PDD-NOS?
2.         What are the effects of snoezelen on the behavior of children diagnosed with Rett’s syndrome?
3.         What are the effects of snoezelen on the behavior of children diagnosed with Asperger’s syndrome?
4.         What are the effects of snoezelen on the behavior of children diagnosed with CDD?
5.         What are the effects of snoezelen on the behavior of children who developed severe autism?
6.         Does the stimulating effect of snoezelen differ in terms of how severe or how low the autistic disorder of the children?

Aims and Objectives


            The aim of the study is to be able to determine the differences of the snoezelen’s effect on different ADSs to be able to provide recommendations on how the attributes of MSEs can be taken full advantage. The focus is on autistic behavior and not on the disease itself.

            The objective of the study is to observe the behavior of children with different types of ASD in a snoezelen and to compare the effects’ similarities and differences. Another objective is to interview resident nurses of snoezelen centers about their personal observations on the effects of the therapy on the behavior of children diagnosed with ADS. Furthermore, the objective is to prove that the effects of snoezelen on behavior differ in the level of ADS.

Significance of the Study

            The significance of the study lies on the fact that investigations on the effects of snoezelen are still limited and still requires further exploration. The path that this study will take is unique compared with previous studies in a sense that it will investigate the effects of snoezelen depending on the severity of the autistic disorder. If ever such differences will be proven, results can contribute in opening up new areas of investigation in subject and further research will be conducted to strengthen and findings or prove the findings wrong. In other words, it will stimulate knowledge in the field of occupational therapy. It will also help establish new standards in snoezelen usage, particularly on how different levels of autistic conditions can be accommodated.

Purpose of the Study


            The purpose of the study is to contribute to the growing but limited body of research studies on the effects of snoezelen on autism or ASD. This is to help occupational therapists in discovering the full potential of snoezelen or MSE so that they can take advantage of its benefits easily. Another purpose of the study is to help the family of those with ASD to think about several factors first before deciding to use snoezelen.

Hypotheses of the Study

            The research will utilize observation, but will conduct a few rounds of quantitative research on occupational therapists in several snoezelens - thus, there is a need to state hypotheses. The following hypotheses will be tested in the study:

H1:      Snoezelen, in the view of the occupational therapist, has different effects on behavior depending on the severity of the ASD.
H2:      The snoezelen helps children with ASD relax and help them sustain anger, self-injury, repetitive behavior and communication skills.
Important Terms
Asperger’s Syndrome - refers to individuals with autistic characteristics but relatively intact language abilities.
Autism defined by the American Psychiatric Association (2000) as a deficit that has three criterions namely: reciprocal social behavior; language development; and stereotypic/repetitive behavior.
Autistic Spectrum Disorder – refers to the broad definitions and classifications of autism, which are: Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS); Rett’s Syndrome; Asperger’s Syndrome; and Childhood Disintegrative Disorder.
Behavior - The actions or reactions of a person or animal in response to external or internal stimuli.
Childhood Disintegrative Disorder - resembles autism but only after a relatively prolonged period (usually 2 to 4 years) of clearly normal development.
Multi-sensory Environment – a quiet room with a selection of sensory equipment arranged to stimulate the primary senses, without need for intellectual or structured responses and relying on immediate pleasurable sensation.
Multi-sensory Stimulation – a therapy that stimulates the five senses simultaneously.
Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) - refers to a collection of features that resemble autism but may not be as severe or extensive.
Qualitative Research a naturalistic research whose findings do not arrived at by statistical or other quantitative procedures.
Quantitative Research – a research conducted through the use of statistical treatment to test hypotheses and show relationships between variables.
Rett’s Syndrome - affects girls and is a genetic disorder with hard neurological signs that become more apparent with age; most develop repetitive hand movements, irregular breathing patterns, seizures and extreme motor control problems.
Snoezelen – A type of multi-sensory stimulation that is based on two Dutch words meaning "to sniff" and "to doze”. Its purpose is to stimulate the primary senses of touch, hearing, sight, smell, and taste.

Literature Review


            Snoezelen is being used by many people with different developmental and behavior disabilities. Some of the literatures that will be reviewed in this section do not involve people with autism per se, but those who have other developmental difficulties related or similar with autistic behavior.

            Zinn (2000) conducted an in-depth interview about snoezelen use of people with Alzheimer’s disease in O'Brien Memorial Health Care Center. She was welcomed by the secretary as she observed that the place has a "homelike" atmosphere. She was shown to the snoezelen room by a staff member and explained to her that for the residents with Alzheimer’s, snoezelen has proven useful for helping reduce the agitation, confusion and combativeness that sometimes come with the disease. Zinn (2000) described the room as a reminiscent of the sixties, with translucent plastic "ropes" containing strings of flashing lights placed on a large table. It also contains “softly illuminated aquarium takes up a large share of one wall, and lava lamps and other decorative lights--containing swirling bubbles and bouncing plastic fish and other eye-catching objects and patterns--sit on smaller tables”. Furthermore, Zinn (2000) also observed a rotating glass ball on the ceiling and a window covered with a black felt curtain with glow-in-the dark stars and planets attached. There is also a scent of aromatherapy and the sound of soft nature and relaxing music (Zinn, 2000). Zinn (2000) found that residents are brought in the room by staff members, where they will receive one-on-one attention. They are brought in only one at a time, and therapy includes soft talking with the staff member and touch therapy such as massaging skin with lotion. Regarding the perception of the residents about the room, Zinn’s (2000) guide member stated: “each resident perceives the room differently, and it can be a new adventure each time”. Most of the residents love the fish tank and the lightings of the room. According to the staff, the room is effective for stimulation, but residents should always have staffs to supervise them to make sure they are safe. It is also the staff’s job to “fluff the residents' pillows, comb their hair, massage them with lotion, play tapes and read to them”. Agitated residents are brought in the snoezelen and it would make them calm for only within half an hour. It also helps the residents’ activity level-up, develop a long-term memory, and gives them a place nice and quiet to sit down with their family members. For the staff, it helps them reduce unwanted behavior of residents and helps them “…greatly reduce the use of chemical restraints”. Those were the information that Zinn (2000) collected during her visit.

            Kinkead (2003) of the New York Times, in her investigation about snoezelen, receives opinion from the administrator of the place that ''There have to be key studies to show that it is effective”. In terms of benefits on mentally disabled children, Kinkead’s (2003) interviewee answered that it can be based on personal feelings and interpretation: “If benefit means smiling, engaging and relaxing, then I believe it is beneficial'', says the interviewee.

On the other hand, Chung et al (2004) conducted a study review to examine the clinical efficacy of snoezelen for older people with dementia. They searched the databases PsyLIT and Medline with the keywords “randomized control/single control/double control”. The list of trials was compared with those identified from a search of the Specialized Register of the Cochrane Dementia and Cognitive Improvement Group. However, only two trials were valid – Baker (1997) and Kragt’s (1997) study. Furthermore, only Baker’s results were analyzed because Kragt did not examine the carryover and long-term effects of snoezelen. The study found that there were improvements in apathy, mood, speech skills, and psychomotor ability of the respondents. But the problem is that the study was limited for two reasons: very limited data were available for analysis, thus limiting data inference and generalization; and different methodology and control conditions were adopted in the two trials.

            Cox, Burns, and Savage (2004) also believes that there are limited studies that show the effectiveness of MSEs such as snoezelen. They conducted a study of their own to examine how effective two types of multi-sensory environments were in improving the well-being of older individuals with dementia. They focused on a Snoezelen room and a landscaped garden and used two methods – quantitative and qualitative. In their quantitative investigation, they used the Affect Rating Scale (ARS) as the instrument and the Friedman tests chi-square statistics for analyses. They also used the Kruskal-Wallis test to measure the differences of effects by stage. One insightful finding is that more sadness was recorded as the affect in the living room environment compared with the garden or Snoezelen room. They also found that Stage 1 was more likely to display pleasure, and that in Stage 3 was more likely to display contentment for the residents. The study also found that participants display higher contentment and pleasure during the session compared to before the session. On the other hand, in the qualitative research, Cox and company conducted interviews to six caregivers and six visitors. The respondents observed that people become calmer in both environments. Agitated residents become calm and their communication abilities improve. Furthermore, they also become happier. Visitors stated that both places are better than pills – a room for privacy, meditation and fascination.

            Barbara McCormack, a mother to a child with Aicardi Syndrome, wrote an article to express her testimonies about the wonders that snoezelen din for her and her daughter (McCormack, 2003). Barbara testified that the day they discovered snoezelen was the first day her daughter “squeal with delight” and “put on the widest smiles”. Now that her daughter is already a teenager, Barbara stated that the snoezelen helped her daughter developed communications skills, improvements in eye/hand coordination and sense of humor (McCormack, 2003). Their relationship improved because of the snoezelen. Basically, what McCormack experienced were similar to what studies show – that “children seem happier while visiting the room, vocalize more, and tend to stay on task in the Snoezelen environment as opposed to their regular environment” (Nicodemus, 1999).

            Kwok, To and Sung (2003) investigated the effects of snoezelen on people with learning disabilities. They explained that the concept of snoezelen is to provide: sensory stimulation; make sense of the world; relaxation; and enjoyment. Ninety-six patients with learning disabilities were included in the study. In summary, the most prominent effects of snoezelen that they discovered are: leisure (62.5%), relaxation (55.2%), improved rapport (51.0%), and reduction of self-injurious behavior (58.1%). They also concluded that snoezelen creates an atmosphere of warmth, trust, and relaxation, and provides scope for exploration, discovery, and learning. However, the findings on the positive effects of limiting aggression towards others were limited, showing the possibility that snoezelen’s effects differ in terms of the severity of the disorder.

            Similarly, Stadele and Malaney (2001) studied the effects of MSEs, but they focused on its effects on the negative behavior and functional performance of people with autism. Their study is only one of the few studies conducted about snoezelen’s effects that specifically focus on autism negative behavior and functional performance. They had two subjects that were chosen non-randomly by the occupational therapist at the facility. Both subjects have common diagnosis of autism and exhibited non-verbal communication. The design was a single subject ABA design with an A phase (baseline condition), a B phase (intervention condition), and an A phase (follow-up condition) (Stadele and Malaney, 2001). Interestingly, they found that both subject 1 and 2 had no significant decrease in number of target behaviors between baseline and intervention, nor between intervention and post-intervention. They concluded that there is no clear pattern of decreased target behaviors during periods of sensory room intervention. Their findings suggested that sensory room intervention needs to be individualized in order to be effective in decreasing target behaviors among autistic children and young adults. However, their findings were limited because only two subjects were observed and that there are no variations on the severity of the subjects’ autistic behavior. Furthermore, the sensory room used was only an improvised one and not an actual snoezelen.

Methodology


Design

A cross-sectional randomized controlled trial study will be conducted to identify the effects of snoezelen on the negative behavior of children with different severity of autistic behavior. The cross-sectional approach is a study of a particular phenomenon (or phenomena) at a particular time (Saunders et al, 2003). Accordingly, cross-sectional studies often employ the survey strategy, and they may be seeking to describe the incidence of a phenomenon or to compare factors in different organizations, but they may, as well, employ qualitative methods, as many case studies are based on interviews conducted over a short period of time (Easterby-Smith et al, 2002; Robson, 2002; Saunders et al, 2003). On the other hand, a randomized controlled trial will also be used as one of the process because the concern of the study is not only on the changes of the behavior, but also on the efficacy of the treatment on the disease. RTC can address issues regarding the strengths and weaknesses of snoezelen on the different severities of autistic behavior. Basically, quantitative and qualitative research will be conducted.

Sampling


            Twenty (20) children with different autistic behavior severity will be trialed. The children will be recommended to attend sessions of snoezelen for a period of four weeks. Children will be observed and then nursing staffs of the snoezelen branch will be interviewed. Respondents will be randomly chosen from the list of clinics or mental centers. On the other hand, staffs will be self-selected given that they participated in the snoezelen experiences of the respondents. The criteria for the children are that they should be diagnosed previously for autistic behavior or autism and that there should be variation in the severity of their condition. The severity of their condition will be measured through the Childhood Autism Rating Scale (CARS).

Instrumentation
           

            Instruments to be used are semi-structured open questionnaires for the nursing staff and the CARS for the children with autistic behavior. An open type questionnaire will be used for the respondents so that: their answers are guided; they can complete answers for duration of time they can be comfortable of; their answers will be simple to analyze; and factual information can be obtained. On the other hand, the CARS will be useful in determining the level of severity of the children’s autistic behavior. It is the most widely used standardized instrument specifically designed to aid in the diagnosis of autism for use with children. Its 15 items include: relationships with people; imitation; affect; use of body; relation to non-human objects; adaptation to environmental change; visual responsiveness; auditory responsiveness; near receptor responsiveness; anxiety reaction; verbal communication; nonverbal communication; activity level; intellectual functioning, and the clinician's general impression. All can be used to measure the severity of the respondents’ autistic behavior (Clinical Practice Guideline, 1999).

Aside from the semi-structured questionnaires that will be presented for the nursing staff, a series of personal interviews will also be conducted. During these interviews, an audio-tape recorder will be used to record the conservation. Furthermore, if possible, a video recorder will also be used to monitor the behavior of the children while inside the snoezelen. This will be helpful to further evaluate and analyze their experience inside an MSE.

Data Analysis


            The severity of the children’s autistic behavior will be acquired through CARS and will be analyzed through percentage and mean analysis. On the other hand, the effects of snoezelen on their negative behavior will be analyzed through observation and then transcribed to quantity. The effects on each severity will be compared and analyzed through the use of chi-square. For the nursing staff respondents, their responses will be analyzed also through percentage and mean analysis. Their more in-depth observation on the situation will be written down and will be analyzed and compared with the statistics collected from the semi-structured interview.

Ethical Considerations


            Confidentiality of the respondents’ personal profiles and preferences will be ensured. This will be stated to everyone concerned especially the guardians of the children with autistic behavior. Furthermore, safety during the activities will be ensured at all times.

Limitations

            Children with autistic behavior and snoezelen nursing staffs will be the only respondents in the study. The trial will only take two times every four weeks.
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