Mieres, Ana C. MSPT, PhD; Smallwood, Varina RN, BSN; Nicholson, Sheila K. PT, MBA, JD
This case study describes 2 visits to an interprofessional (IP) school-based clinic within one academic year, by a 9-year-old boy, diagnosed with pervasive developmental disorder—not otherwise specified (PDD-NOS). The findings of these consecutive clinic visits are described and discussed. In addition, a health care attorney provides a legal perspective of risk analysis in this setting. In a growing population such as those with autism spectrum disorder (ASD), this topic possesses high relevance and urgency in school-based care. With most states having adopted direct access for physical therapy, the concept of providing direct access services within a school setting is timely.
The prevalence of children with ASD in the United States exceeds juvenile diabetes, pediatric cancer, and pediatric AIDS combined. The disorder leads to lifelong disability of varying scope with a variety of symptom expressions.1 ASD is the second largest permanent developmental disorder affecting children, affects 1 of 110 children in the United States, and is growing at a rate of 12% to 14% per year.2 With this increase comes an elevated need for services and programs that effectively promote the performance and participation of children with ASD in the schools.
Sensory disturbances have been widely reported by individuals with ASD and their parents.3–5 Despite gaps in ASD research, physical therapy, speech pathology, occupational therapy, audiology, cognitive-behavioral therapy, psychology, nursing, and special education provide interventions at school for children diagnosed with ASD. The identification and treatment of pain is one basic service required of licensed providers, regardless of the setting. However, the manifestations of pain in children with ASD have not been measured with reliability. Because children with ASD spend a great deal of their day in school, the understanding of the nature of pain by health care professionals in schools is of great importance. The ability for health care providers, teachers, and administrators to accurately interpret situations and effectively respond addresses basic needs for safety and risk management in the school setting.
Clinic Setting and Staffing
The clinical setting for this case was an established charter school providing a constellation of integrated programs with an elementary, middle, and high school, along with a transitional program for children aged 4 to 22 years. Serving a large population of children with more than 90 differing medical diagnoses, this specialized school for children with severe learning disabilities sought to address the medical problems that encumbered the students. Individualized education plans (IEP) for many of the students called for specific monitoring, special medical interventions, accommodations, modifications, and management of other health issues. As part of a pilot program, the administration built a medical team of health care professionals including a registered nurse, both trauma and emergency department trained, and a physical therapist with both orthopedic and neurological experience to provide primary care to the students of the school. It was the intent of administration that the novel team also would provide for more robust assessment, interdisciplinary consultations, and strategies to support teacher education on health matters that affect student performance.
This team provides direct access to the health care system by providing primary care. The therapist and the nurse are the first point of entry. After screening and triage, students who do not have neuromuscular conditions are referred to appropriate health care specialists. The therapist is not expected to identify conditions that are not of neuromuscular or musculoskeletal origin. However, risk factor assessment and screening for a broad range of medical conditions is an important part of primary and secondary prevention.6
This school is located in a state that provides for both evaluation and over 20 days of treatment by licensed physical therapists, without a physician referral.7
Although physical therapy is a well-known medical profession, the additional skills needed for practice in a school-based clinic are less known. Physical therapists have formalized training and education in musculoskeletal and neuromuscular conditions. Physical therapists also have formal training in pain assessment and management. Specific physical tests including pain measurement(s) are performed along with history taking and documentation of functional limitations, a systems review and other tests and measures.8 The results of these tests and measures are then combined and synthesized during the evaluation process carried out by the physical therapists to establish a diagnosis, prognosis, and plan of care, which includes the careful selection of interventions. At each session, the physical therapist uses metrics to identify improvement. One such metric is pain quantification. Legally speaking, this detailed process is referred to as “the duty” of the physical therapist, which is legally required and breaches of this could lead to liability in a lawsuit. Duty is a legal obligation to perform services within a profession's standard of care.9
Over the years, physical therapy and nursing have sought more quantitative pain documentation using descriptor tests, both verbal and pictorial, discrimination tests, indexes, pain drawing, maps, provocation and structural provocation of tests, questionnaires, and scales to name a few.10,11 The documentation of pain is an additional outcome indicator during the implementation of a plan of care to gauge patient compliance, accuracy of diagnosis, risk prevention/reduction strategies, or as evidence that another problem may be emerging. Therefore, pain or the absence of pain could trigger further tests and evaluation.
The specific absence of the capacity of a patient to detect pain is a critical hazard for comprehensive, effective management because identification and localization of pain is a first priority for pain assessment. Historically, absence of pain indicators can lead to burns, fractures, and other injuries. If the absence of pain is correlated with a sensory deficit of some type, special attention is required. When a sensory deficit is unknown or unexpected, there is significant clinical and legal effect.
In December 2006, CNA HealthPro12 published a study that identified the top-2 injuries alleged in patient claims studied from December 1, 1993 through March 3, 2006 as trauma, including fractures and burns. Burns and other injuries have been previously linked with sensory deficits.10
Pain is a core determinant of the integrity of the sensory, perceptual, and somatosensory processes.7 Ability to feel pain and recognize the sensation of pain is paramount in the maintenance of integumentary integrity. Each discipline provides integumentary patient education and requires patient demonstrations of effective skin checks and preventative relief strategies.7,9,10,12 Pain remains an important component of both the nursing and the physical therapy evaluation and intervention strategy.7,10 The addition of a physical therapist to a school-based clinic, although unusual, complements nursing and adds musculoskeletal and neuromuscular aspects of care to the rigor of nursing medical evaluation and effective student accommodation available at this school.
Moreover, physical therapists are becoming recognized and promoted as the practitioners of choice for persons with conditions that affect movement, function, health, and wellness. Integral to this role is the ability to refer a patient to a physician for a condition that is outside the scope of physical therapy practice. A physical therapist can be left open to legal action by failing to report symptoms unknown to the physician of record or failing to report the changing condition of a patient.5,13
Clinic Episode 1
A 9-year-old male student arrived in the school infirmary, complaining that “noise in the classroom bothers too much and I don't want to be around people.”... “Being touched, feels very bad.” The student underwent a nursing and physical therapy screening including medical history, risk factor assessment, clinical presentation, associated signs and symptoms, and review of systems. Findings were unremarkable except for persistent behaviors that included withdrawal, distractibility, comfort seeking, less vocalizations, sensory avoidance, and use of both sitting and side-lying fetal positions.
The student had a history of PDD with a moderate central auditory processing disorder, left ear greater than right, and fine motor impairments. He had a history of both sensory avoidance and sensory-seeking behaviors. He had a normal IQ. No other medical problems were reported. He had an extensive IEP in place. He was taking Adderall (amphetamine and dextroamphetamine) to enhance focus. Interview of the teacher identified that the volume level in the class was no different over the last several days, and the student had not voiced distress over that period. No classroom conflicts were reported, nor were examinations scheduled. The teacher was suspicious that his behavior could be classic classroom avoidance.
He denied pain of any type, using a 0- to 10-point visual analog scale. He did not demonstrate gait deviations. There were no reports of antalgia and no observable indicators of antalgia. He used both arms well and was seen to lift them above his head. He did not complain of pain with movement or palpation. A skin assessment revealed several recent bruises and cuts around the knees, with denial of pain at these sites when palpated. He denied any injuries or falls that could have caused bruising, and did not remember obtaining these bruises, but suspected that they might be from skateboarding.
The student, however, appeared to be in distress throughout his assessments. He spoke little; demonstrated compact, energy-saving movements; and sat in a flexed position, with his shoulders forward and his head forward and flexed. Upon completion of the examination, he sat quietly in a self-selected corner of the infirmary and covered his head with his hood in a flexed posture, knees to chest. His next class was physical education, which he had stated he enjoyed in the past, but he asked not to attend. His behavior, posture, and diminished speaking were a departure from the behavior demonstrated when receiving daily medication in the clinic.
In clinic visit number 1, disagreement existed between teachers and clinic staff regarding whether an illness existed. The nurse and the physical therapist agreed that the child was demonstrating pain behaviors, although his statements did not confirm this. Despite a culture where students sometimes feign illness to avoid a difficult class or situation, this team ruled on the side of observations, experience, and caution. Failure to do this, and subsequently, if it is determined that there was illness, would expose the health care provider to poor outcomes and risk.14 The team generated a professional judgment that despite lack of ability to quantify pain in this child with reliable metrics, the screening indicated further formal assessment and referral was warranted.
A referral was made to the child's pediatrician, who evaluated the child that same day. No referrals were made by the pediatrician to other health care providers. The student was cleared to return to school the next day. One week later, the teacher and the mother recognized that the problem remained. The child returned to the clinic, demonstrating no change in symptoms. Another referral to the same pediatrician was made, as per school policy. The student was again cleared by the pediatrician to return to school the following day. By week 3, the student was observed in the classroom by the IP team. They noted that the student's behavior and demeanor in the classroom had not changed since the first visit to the clinic. The student had been told not to return to the clinic by the homeroom teacher and the pediatrician.
The IP team met and reviewed the case. As the symptoms were reviewed, it was noted that the student was speaking less to other students, faculty, and staff. Although this could be a sign of withdrawal, perhaps this may be a sign of oral problems. After discussion, a referral to a dentist, specializing in children with developmental disorders was suggested, as 5 weeks had passed without any change in the student's demeanor. The dentist scheduled the student within the same week. Upon assessment, the dentist discovered a severe abscess affecting 2 teeth. The dentist reported that an abscess of this size without pain is unusual, given the size, the depth, and the proximity to bone. The abscess required two 10-day rounds of antibiotics until the infection was completely remedied.
The IP team continued follow-up with the child, teachers, and parent. Close to the completion of the second round of antibiotics, the student reported that noise in the classroom and being touched by others were no longer problems. Classroom performance and communication with classmates returned to previous levels. The IP team recommended that the student be evaluated by a dentist regularly as pain is not a reliable marker to be used in his dental management. The student began to be evaluated by the dentist every 4 months. As a result of this episode, the IP team determined that more information on discomfort would be sought in addition to pain, as students entered the clinic and recommendations for referrals initiated sooner.
Clinic Episode 2
Two months later, the same student arrived in the clinic and stated that he was “not able to concentrate and the noise was bothering him.” The same teacher, as in infirmary visit 1, referred him to the infirmary after repeated requests from the student. The physical therapist was providing service to the clinic at this time as first responder. As before, medical screening included medical history, risk factor assessment, clinical presentation, associated signs and symptoms, and review of systems. Again, the student denied pain, using a 0- to 10-point pain scale, both verbal and pictorial. When given the same scale of 0 to 10 and instead asked, “How uncomfortable are you?” the student stated about a 7. He was then asked whether he could lie down. As he lay down, his shoes and socks were removed and his feet were inspected. Upon inspection, multiple superficial cuts and lacerations, some covered with band-aids, were seen bilaterally. When the mother was called from the clinic, she stated that over the weekend the student played in the sand dunes without shoes. She further stated that the other children playing with him left quickly after complaints of painful pinching in their legs and feet. The student continued to play in the dunes without any sign of discomfort and could not understand why the other children were complaining.
Later that evening, the mother discovered bleeding cuts on his feet. The mother reported that the student was taken to a 24-hour clinic, where the physician removed 14 sand spurs by tweezers. The student assisted in the removal of the sand spurs using tweezers, without complaints of pain even when extractions were deep and difficult to see. The student was placed on topical and oral antibiotics. He did not complain of discomfort throughout any of the medical intervention. However, the following morning, almost 24 hours after the event, the student complained of excessive noise, did not wish to be touched, and covered his head.
Following the first infirmary visit, the IP team became guarded about the student's ability to characterize, recognize, discriminate, or feel pain. As a result, a series of new questions was added to his assessment. “How uncomfortable are you?” became a key question to ask this child in addition to the previously described verbal and pictorial pain scale. As a result of this change in procedure, the student stated at first that he had a 0 in a pain scale of 0 to 10. Instead, when asked, “How uncomfortable are you?” the student indicated a 7.
A telephone conference was held with the mother. Despite no pain declared, the mother requested that the nurse provide acetaminophen (Tylenol) and document the outcome. After 40 minutes, the student stated that he could go back to class because he felt better. Before returning to class, the bottom of both feet were cleansed with hydrogen peroxide and dressed with antibiotic cream and large band-aids. The ability to dispense acetaminophen and antibiotic cream was provided by a previously developed policy and procedure with a form, signed by his physician at the start of the academic year to provide first-aid intervention during school. The student was able to stay in school the remainder of the day, without any additional visits to the infirmary or complaints of nonspecific distress.
A new IP team piloting a school-based clinic in a charter school was able to effectively collaborate using assessment strategies specific to each discipline and facilitated appropriate medical care for a young boy diagnosed with a form of ASD, PDD-NOS. Although the time from the identification of student discomfort to the provision of dental care was 5 weeks, the student was ultimately medically managed effectively for a severe dental abscess.
Further monitoring of this student and close communication with the mother uncovered that impaired pain recognition was affecting the student's feet in addition to his mouth. For this student, pain was an unreliable indicator of both a dental infection and piercing of skin by thorny objects. Skin checks with a mirror, much like what is taught to individuals with diabetes, were taught to the student and his family. Shoes will need to be worn at all times and the inside of shoes are now to be investigated for any object before donning because objects may not be felt and may cause injury. Field trips will require reminders for this student and his teachers that skin checks are necessary and shoes must be worn.
As a result of these 2 episodes of care, mechanisms to evaluate pain and discomfort were expanded while active communication with the student's pediatrician became a regular occurrence. School, family, and physician education occurred. The student was encouraged to self-advocate when he needed medical care and was cued to practice verbal strategies among family, friends, and school personnel.
The ability of the clinic to accept referrals from teachers was well received. Teachers determined that they were freed from having to quickly analyze symptoms and arrive upon a determination of their own, which eliminated pressure to effectively assess a student while simultaneously leading a class. Teachers were pleased to participate in a systematic process that could positively affect their students' outcomes. Meetings were scheduled by individual teachers and groups of teachers on their limited breaks, to answer questions about medication effects and diagnoses. In-service educational programs for all the teaching and support staff were requested for medical problems and risk management when many questions were arising about similar topics. With student confidentiality honored, organizational teaching and preparedness became an active role of the IP school clinic team.
Two separate episodes of care for a child diagnosed with PDD-NOS within 1 semester in a school-based infirmary employing a seasoned and experienced medical IP team were described. Each visit to the clinic provided growing insight into the inability of this child to perceive pain and articulate the experience of discomfort. Yet, the ongoing inability of this child to effectively function in the classroom with unclear complaints of malaise and discomfort generated further analysis and intervention by the IP team. Permitting this student to stay in the classroom or inaction was not acceptable as his interactions with others were diminishing and the student was demonstrating withdrawal. Several issues are important to consider in this case report.
The time taken to obtain appropriate care for the oral infection in this student was excessive. Several factors affected this time frame. Disagreement among school personnel delayed care. Inadequate determination by a teacher as to whether medical care was necessary and the ability to distinguish between malaise and classroom avoidance behaviors was also a factor affecting timely care. Previous classroom management techniques for some of the newer teachers focused on the flow of carefully planned and predetermined lessons. When a student with vague symptoms presented in the classroom, time to effectively provide the lesson to others would be forfeited to determine whether the malaise was real or not. In this setting, however, those decisions no longer needed to be made and the clinic provided the staffing to absorb that aspect of what some teachers considered their classroom management role.
The community pediatrician caring for the student was ill-prepared for management of children with an ASD. Despite 2 visits, blood samples were not drawn, which could detect high white blood cell counts and an infection would have been suspected. In addition, the pediatrician did not interact with the school clinic, other than by note, despite written permission provided by the mother. More information about the behaviors and the withdrawal of a previously active child could have been discussed more fully, perhaps leading to earlier treatment.
The assessment of pain in children is an important concept to consider in this case. Von Baeyer15 states that most children aged 5 years and older can provide meaningful self-reports of pain intensity if they are provided with age-appropriate tools and training. There are many sources of bias and error in self-reports of pain however, so ratings need to be interpreted in light of information from other sources such as direct observation of behavior, knowledge of the circumstances of the pain, and parents' reports.16 Yet, self-report pain scores are not a gold standard.16 Children's self-reports of pain intensity are a valuable source of information, but their interpretation must be considered together with observation of behavior, reports by parents, clinical data, and information on the child's social environment.16 Estimates of pain intensity based on these other sources may not always correlate highly with children's self-report of pain and may reflect different perspectives of the pain experience.16
Pain assessment strategies for children with ASD are poorly understood. Until such time as research informs practice, strategies may need to be modified, especially when a child with ASD is nonverbal. If a child is unable to communicate about the pain intensity, location, or character, alternate pain assessment may be necessary based on behaviors, parent input, and appraisal of the situation. Research to understand pain in individuals with ASD has begun. Significantly, increased sensitivity to noxious thermal stimulation and also low-frequency vibration in a study of 16 adults (8 with autism and 8 neurotypical) were identified in a recent study.15
In a frequently cited study of 43 children during venepuncture (21 with autism, 22 nonimpaired), Nader, Oberlander, Chambers, and Craig, in 2004,17 found that behavioral responses to pain were similar between the 2 groups of children with the exception that children with autism had a more pronounced facial expression of pain evident during the actual venipuncture than did the children without impairments.18 Observational pain assessment tools such as the revised Faces, Legs, Activity, Cry, Consolability instrument may be useful with this population, especially because the tool incorporates caregiver-identified child-specific pain behaviors.19 Such a tool would be relatively easy to incorporate into clinical practice.
Ultimately, a strategy for identifying pain or illness or both in this growing population of children who attend school is indicated.20 Children with ASD may have sensory problems that interfere with medical evaluation in the school setting. Parents may not be aware of sensory deficits. Pediatricians may also be unaware. Some children are underresponsive to sensation and others overreact. Some children with ASD are verbal and some nonverbal. Even for those who are verbal, the ability to effectively understand or express themselves may be impaired. Others may use sign language to communicate. Reading facial expressions, understanding gestures and nonverbal communication, and recognizing inflection along with the other factors mentioned earlier generate great challenges when a child with ASD is ill in school. The ability to communicate with a child who may have word-finding difficulties or use a combination of sign language and words is important. Despite a rising prevalence, an algorithm or guideline for episodic medical care in schools for children affected by ASD is not available.
Further research is needed to explore the perception of pain and discomfort in children with ASD including dental pain. In the allopathic system of care, referral to dentists is not a primary consideration when assessment fails to generate answers. In this case, referral to a dentist was critical as it exposed both infection and sensory deficits.
Identification and communication of pain using reliable metrics are also needed. A template for the development of IP community strategies to identify, quantify, communicate, and address pain in children with an ASD is also of importance. The determination of how best to educate teachers, families, and caregivers responsible for the medical care of children with an ASD is indicated. Research-driven guideline for practice to include strategies to teach self-advocacy to children with an ASD, with differences in pain perception and language abilities, is also necessary and vital.
From a legal perspective, the duty owed to the student in this situation was to evaluate, assess, and develop interventions for problems identified that are within the scope of nursing and physical therapy practice or to refer to another health care practitioner. To be very specific, duty is “[a] legal obligation that is owed or due to another and that needs to be satisfied [or] an obligation for which somebody else has a corresponding right,”14 whereas standard of care is defined as “in the law of negligence, the degree of care that a reasonable person should exercise.”14 The difficulty in this case is that traditional pain assessment measures were not adequate to identify the student's pain related to his perception or recognition or both of pain. Thus, although this was an IP team decision, if the IP team relied strictly on traditional pain measurements, they might have missed the abscessed tooth. An undiagnosed abscessed tooth could lead to permanent tooth/mouth harm and/or sepsis and/or, in an extreme case, death.
The elements of a medical malpractice claim are essentially duty, breach of duty, causation, and harm (damages).14 Hence, the duty in this case was created when the school entered into a pilot program to provide health care services. The duty was created with this program and included the screening and treating within the scope of physical therapy and nursing. Clearly and unequivocally, pain assessment is within the scope of both the practice of physical therapist and nursing. Thus, breaching the duty to appropriately assess pain in the student could have led to an undiagnosed tooth abscess. Damages would be the economic and noneconomic (pain and suffering) losses suffered by the student as a result of the undiagnosed abscessed tooth.
The difference between a regulated health care professional and an unregulated one is the necessary use of judgment in unclear situations. However, there are clinical events where judgment should prevail even with policies and procedures in place; in these situations, the clinician should document the reason and rationale for deviating from the policy and procedure because it is common for policies and procedures to establish what is expected in the clinic. As such, deviation from that can be argued to breach duty.
This case example exemplifies the type of professional judgment required of all physical therapists and nurses in any clinical setting: the judgment to perform appropriate tests and recognize when variations are required because of the individual patient needs. Here, the student did not understand or comprehend traditional pain. Yet observations and behavior implied that he was in pain. Consequently, the pain measurements had to be modified to accommodate the student's sensation differences. Without that modification or use of professional judgment, a malpractice claim might have been created.14,21
Integrated and collaborative medical care is rather important to ensure efficiency as well as sustainability.14 Barrett et al22 provide evidence that indicates that teams are less prone to making mistakes than individuals, especially when team members are keenly aware of their role and responsibilities.14,21 Environments conducive to IP care help to reduce clinical error.
In this case, the IP team worked well together integrating their differing skill sets and specialized training: the physical therapist provided musculoskeletal and neurological screening and assessments while the nurse provided evaluations and screening for other system problems. Each, confident in their respective roles, sought the insight of the other. When overlap in evaluations took place, interevaluator reliability could be tested. In this case, overlap strengthened the professional judgment that additional referrals were indicated.
In 2001, Barrett et al,22 reviewing closed claims in a hospital, discovered that IP team work would have prevented or mitigated events leading to malpractice claims in 43% of the events under study.20 In what is called the Stanford Chronic Self-Management Program, researchers concluded that patients experienced statistically significant improvements in health behaviors, self-efficacy, which includes health distress. Fewer emergency department visits in a 6-month period occurred.20 The practice of referral and consultation across disciplines is an underlying assumption in IP care, which was critical and necessary in this case.
Conservative measures, IP consultation, and referrals to other professionals generated a positive outcome. The school medical staff suspected that sensory differences were present resulting in broader questioning to capture other indicators of discomfort. Known mechanisms for interpretation of pain were expanded, which became operationalized in this setting, independent of medical or educational diagnosis.
The addition of a registered nurse and a physical therapist, each with extensive training and experience, provided robust capabilities in medical assessments, informing IP decision-making in this case. The experienced clinical practitioners respected each other's role and sought each other's findings, interpretations, and insights. This generated clarity and confident actions, when other professionals in the school questioned the validity of the medical complaints of this student. The assessments by nursing were complemented by the neuromuscular and musculoskeletal assessments and medical screening of physical therapy. A guideline for medical screening discussed by Goodman and Snyder6 provided the template for clinical decision-making to include medical history, risk factor assessment, clinical presentation, associated signs and symptoms, and review of systems, which was complementary to nursing assessments in this case.23
The parent was supported in seeking answers by the school clinic staff, although the time frame to obtain answers was lengthy. The parent was pleased to have a place to bring repeated questions that had not yet been answered. Now a strategy is in place to proactively manage dental care, inspect skin regularly with special emphasis on the bottom of the feet, and continue to ask questions until answers are received. The parent no longer permits the student to walk barefoot at the beach, on the lawn, or in the home. In addition, the parent, his pediatrician, teachers, and school clinic staff began to recognize that perhaps hypersensitivity to sensory issues, like sound and touch, are indicators for this student that he may be ill or have a medical problem that needs careful assessment. An additional goal in the IEP was added for the student to identify when discomfort is first beginning, and to demonstrate self-advocacy in school to verbalize and seek timely care.
Other results of this pilot program were discovered, with the addition of licensed medical staff on campus, some children who were unable to attend school the previous year, could do so with additional supports. Formal communications with physicians were established. Ultimately pain journals, anxiety journals, and seizure journals were developed for this population. Physicians called the nurse and the physical therapist during patient appointments in consultation because a plan of care was altered. Evaluation of the effects of an IP school-based clinic would be of interest in the analysis of school, health, and quality-of-life metrics.
In this case report, the effective use of a collaborative model to meet the primary health care needs of a student with PDD-NOS as evidenced by declining student performance and repeated visits to the school-based clinic generated a positive outcome. The student's impaired sensory perceptions masked and delayed the ability of health care professionals to recognize infection. Yet, cumulative observations by the team generated serial referrals until a diagnosis of dental abscess was made in the absence of clear indicators of pain. Further studies are needed to recognize illnesses earlier in the absence of pain or pain perception in children with a form of ASD, and to develop reliable and valid metrics for pain identification for both verbal and nonverbal students.
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autism spectrum disorder; child; interdisciplinary health team; interdisciplinary health team/jurisprudence; nursing; pain assessment; pain measurement; periodontal abscess; physical therapy; primary health care; school health services; special education
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