Shawn Zhong, MD

• Department of Surgical Critical Care
• R Adams Crowley Shock Trauma Center, University of Maryland
• Baltimore, Maryland

According to the National Center for Family/ Professional Partnerships of Family Voices (2018) hiv infection rates in poland cheap vermox 100 mg mastercard, Interdisciplinary Education and Practice 629 Family-centered care is a way of providing services that assures the health and well-being of children and their families through respectful family/professional partnerships hiv infection rates decreasing discount vermox on line. It honors the strengths antiviral blu ray review generic vermox 100 mg on-line, cultures hiv infection barber buy vermox paypal, traditions hiv infection rate malaysia vermox 100 mg order overnight delivery, and expertise that families and professionals bring to this relationship. These assumptions underpin what he describes as a mutual learning approach, an approach that strengthens teams of all types and combinations. In considering teams that might work with children with disabilities, these teams could comprise clinicians working to diagnose a challenging condition; partnerships between families and clinicians caring for a child who has a complex social situation; or social workers, educators, and other community service providers working with parents to manage or coordinate the systems of care for a child with special health care needs. These assumptions are highly relevant to engagement with and around the population of children with disabilities. For interdisciplinary practice to be effective, individuals from the many clinical and educational disciplines who interact must recognize that other disciplines, including families and selfadvocates, bring their own perspectives and expertise, as well as personal preferences and challenges, which can make the translation of theoretical skills in the clinical practice setting daunting. For example, in the middle of an emotion-laden Individualized Education Program meeting with contrasting views on the continuation of therapies, participants should be aware of personal differences. Evidence suggests that during times of conflict or high emotions, team members should employ knowledge of motivations, personality preferences, and discipline from the perspective of the "other. The second assumption underscores the importance of respect among those who collaborate. The third assumption is perhaps at the very core of the concept of interdisciplinary care: By learning from one another- from parents, from children, from assorted clinical disciplines, or from organizational leaders who oversee services-there is value added to the engagement. The value is truly greater than the sum of the parts in addressing what can often be complicated challenges. The fourth assumption expresses the important role of compassion for one another in collaborative efforts. To be able to step back, be nonjudgmental, and assume the best about one another opens the way for new and creative insights into how to address challenges. The Interprofessional Education Collaborative (2016) has outlined four competency domains (see Table 30. These items reflect both the mutual learning assumptions and interprofessional collaborative competencies described above. The National Center for Interprofessional Practice and Education has become an important repository of tools to describe and assess interprofessional/interdisciplinary efforts (Brandt & Schmitz, 2017). Interprofessional education collaborative competency domains with selected competencies Competency domains Values/ethics for interprofessional practice Selected specific competencies Place the interests of patients and populations at the center of interprofessional health care delivery and population health programs and policies, with the goal of promoting health and health equity across the life span. Respect the unique cultures, values, roles/responsibilities, and expertise of other health professions and the impact these factors can have on health outcomes. Use unique and complementary abilities of all members of the team to optimize health and patient care. Choose effective communication tools and techniques, including information systems and communication technologies, to facilitate discussions and interactions that enhance team function. Use respectful language appropriate for a given difficult situation, crucial conversation, or interprofessional conflict. Describe the process of team development and the roles and practices of effective teams. Apply leadership practices that support collaborative practice and team effectiveness. Roles/responsibilities Interprofessional communication Teams and teamwork From Interprofessional Education Collaborative. Questionnaire items to elicit interdisciplinary practice attitudes and beliefs and determine frequency of interdisciplinary skill use Attitudes and beliefs about interdisciplinary practice Providing services in interdisciplinary groups helps professionals become more sensitive to the diverse needs of consumers/patients than providing services as a single discipline. The benefits of interdisciplinary patient care or program plans are worth the extra time it takes to communicate across disciplines. The interdisciplinary approach reduces duplication and fragmentation in the delivery of care/services. Providing services as an interdisciplinary group gets better results for consumers than working as single disciplines. When I look for my next position, I will purposefully look for an opportunity where collaboration across disciplines is the norm. Interdisciplinary skills Assemble interdisciplinary group members appropriate for a given task. Effectively work other professionals with cultural backgrounds different from my own. Develop a shared vision, roles, and responsibilities within an interdisciplinary group. Effects of interdisciplinary training on professionals, organizations and systems. Interdisciplinary Education and Practice 631 case study, for instance, the mother may have valuable insights into alternative service systems and care practices from her experience living in another state. Even the restriction on entering households, although intended to address the political concern over the intrusion of the federal government into private family life, expressed respect for families as partners in the care of children. The Importance of an Interdisciplinary Approach to Children with Medical Complexity According to Cohen and colleagues (2011, p. The demand for a well-developed competency in interdisciplinary practice is further underscored by the additional phrase, "not easily met by existing health care models. The costs-financial; emotional; and the time and attention of parents, clinicians, and educators-have prompted many models of care. Existing care models include medical homes, co-management, and hospital-based and hybrid models that focus on care coordination" (2011, p. The challenging nature of the conditions, in clinical terms, interpersonal demands, and stresses among institutional stakeholders. But no official, or agent, or representative of said bureau shall, over the objection of the head of the family, enter any house used exclusively as a family residence. The chief of said bureau may from time to time publish the results of these investigations in such manner and to such extent as may be prescribed by the Secretary. It is crucial to recognize that parents are likely to bring salient insights from the many social determinants (Artiga & Hinton, 2018) that influence their capacities to manage effectively the care of their children. Similarly, inadequate community infrastructure, such as a lack of available transportation or the availability of affordable respite or child care, may prohibit parent attendance at meetings. Family immersion in interdisciplinary education alongside clinical disciplines can influence their ability to partner both with their peers and health professionals. However, shifts in leadership are an excellent time to employ interdisciplinary leadership competencies. On another level, interdisciplinary education involves developing the capacity to utilize two fundamental insights, independent of discipline, that stem from the following two questions: · What are my strengths, weaknesses, preferences, and motivations that inform my ability to work collaboratively In other words, the intentional focus on interdisciplinary practice during the program seemed to enhance the frequency of skill use as far as 8 years afterwards. As noted, most evaluations of interdisciplinary education have been limited to the early levels of the typology described by the Kirkpatrick Model (Kirkpatrick Partners, 2018), specifically reaction, modification of attitudes/perceptions, acquisition of knowledge/ skills, and behavioral change (Reeves, Boet, Zierler, & Kitto, 2015). Those who reported having made changes in any of the four domains of organizational practice. These insights demonstrate that interdisciplinary/interprofessional training involves much more than simply taking courses in other disciplines or with students from other disciplines. This should alert training programs to the importance of gathering and analyzing behavioral outcomes. Attention to these characteristics can enhance the quality of care and begin to address the need to overcome the tendency to think in silos and to more effectively address differences in clinical opinions. Attention to such characteristics can bring a spotlight to practical challenges, such as developing the resources to support interdisciplinary efforts in, for example, care coordination, as well as to facilitate efforts to ensure that all disciplines, including self-advocates, are at the table. Many of these conditions, meant to foster interdisciplinary research among scientists and 634 Margolis and Rosenberg Table 30. Individual and team considerations in planning and evaluating interdisciplinary education and practice initiatives Issues External/internal drivers that influence development Potential partners Examples A clinical team makes the case for enhanced interdisciplinary training by noting the contributions of interdisciplinary practice to ongoing quality improvement, responding to the demands of health funders. After several months of participation in clinical conferences, she shares her observation that voices that could potentially contribute to the quality of care for complex cases are often not at the table. She encourages, for example, that two community organizations, known for their opportunities for families with children with special health care needs may be helpful partners. The members of a clinical team, working with families, share disciplinary insights as to their roles and responsibilities in working toward family-directed goals. Team members establish a practice of regularly giving brief feedback to each other about the use of interdisciplinary skills. Considerations Climate of acceptance Current leadership Community organizations and individuals Family/friends of patients/clients Opportunities within the current learning context Key players in designing intervention Patient population, practice sites Learner disciplines, training level, timing Degree of involvement Roles and responsibilities Communication strategies Needs assessment, pre-evaluation the need to anticipate and overcome barriers Goal of the activity at interprofessional and profession-specific levels Specific objectives of activity Defining and implementing essential elements of interdisciplinary practice Attitudes, skill development, team building to effect changes in clinical practice Quality of care and population health Problem-based Practice-based Lab Satisfaction, learning of attitudes, knowledge, skills Behaviors that result in short and long term measurable impacts Funding Challenging the culture Teaching methods and tools to meet objectives Evaluation measures Faculty regularly review literature on methods and activities to advance interdisciplinary continuing education. A faculty team plans a series of workshops to introduce the principles of interdisciplinary practice to graduate students in health affairs. While the team will measure satisfaction with the workshops, they also commit to observe and measure interdisciplinary skills among the participants. They recognize that in order to realize the benefits of interdisciplinary training and practice, they approach center leadership with proposals and invite a conversation on strategies to raise the necessary resources. For example, building bridges includes creating an "environment that encourages faculty/researcher collaboration"; discussing "common problems to solve"; and having "seminars to foster bridges between students, postdoctoral scholars, and investigators at the same institution" (National Academy of Sciences, National Academy of Engineering, & Institute of Medicine, 2005, p. In Facilitating Interdisciplinary Research, the importance of other institutional policies is noted. For example, tenure/promotion policies can advance training initiatives if they are recognized as valuable scholarly contributions, or they can impede such training if criteria are limited to narrow, single disciplined­based measures (Hammick, Freeth, Koppel, Reeves, & Barr, 2007). With regard to governance, the report suggests that a matrix organization may best reflect an interdisciplinary environment. This means that faculty bring to Interdisciplinary Education and Practice 635 Table 30. Organizational characteristics needed to advance interdisciplinary education and practice: A reflection tool for programs Characteristic Physical/virtual environment Definition the virtual and physical environments allow collaborators from different disciplines to meet in a reasonably convenient way, either electronically or in person. Missions, visions, and goals to support interdisciplinary research and teaching and community engagement Institutional financial policies make available monetary and in-kind resources to facilitate interdisciplinary collaboration. Examples Members of an interdisciplinary group are located in offices with convenient access to one another. Expansion of the web-based clinical platform to assist communicating and sharing of appropriate documents with extended family members and community partners. A university policy satisfies the needs of all interdisciplinary partners to share indirect costs on grants. An institutional policy encourages departments such as developmental pediatrics, speech and language pathology, and childhood education to pool financial resources to provide joint training programs. The dean of a school of nursing promotes a policy to encourage that articles written with colleagues from other disciplines are valued in evaluation for promotion. An occupational therapist paves the way for a physical therapy graduate student to satisfy clinical education requirements related to adaptive equipment use. Discipline-specific departments have a common calendar that allows designated blocks of time to be set aside for interdisciplinary education and meetings. A pediatric residency program sets aside a designated block of time for exchange between disciplines. The program includes all relevant stakeholder groups on a steering/ advisory committee. Family representatives are involved in the revision of clinical and nonclinical curriculum through activities such as completing surveys, participating in planning meetings, and providing ongoing feedback. The chair of a special education department intentionally hires faculty from disciplines such as public health, not normally represented in the department. A faculty member from a special needs nutrition program initiates a multischool collaborative group to develop an interdisciplinary leadership curriculum. A psychologist holds a program accountable to ensure that all necessary disciplines are represented on clinical assessment teams. In response to a community funding opportunity, one of the first question a clinician asks is, "How will I involve my colleagues from other disciplines Institutional strategic plans Financial policies Other institutional policies Institutional policies other than financial policies facilitate and support interdisciplinary collaboration. Scheduling A shared calendar that facilitates collaboration across institutional units. Governance Multiple stakeholders, including professionals, clients, families, and/or community members, are active participants in setting the direction of interdisciplinary activities. Relevant institutional leaders, such as deans, chairs, provosts, and clinical program directors acknowledge and support an overall strategic goal of interdisciplinary education, research, and collaboration among schools, departments, and programs. Individuals who advocate for, initiate, and maintain clinical or programmatic interdisciplinary collaborations. Institutional leadership Champions Culture of collaboration A culture of interdisciplinary collaboration exists when it is the norm for professionals from different disciplines to value working together. Responsibility is shared in reaching goals, making joint decisions, resolving conflicts, and developing and implementing activities. Program leaders routinely evaluate whether the programmatic structure, function, and outcomes are consistent with interdisciplinary practice. Accountability In the annual review of a clinical team member, a department head solicits a report about interdisciplinary activities. Clinicians routinely review reports to ensure that the information provided to clients (individuals and caregivers) reflects an interdisciplinary family-centered interpretation of clinical assessments and suggestions for intervention. The structure of the training program may include collaborative efforts among disciplines such as joint degrees, courses jointly sponsored and taught, or team teaching by colleagues from varied disciplines. Interdisciplinary research projects and publications integrate the perspectives of investigators from multiple disciplines. Examples A program offers an interdisciplinary leadership certificate that includes courses and learning experiences that reflect multiple disciplines.

The type and timing of follow up for these problems will depend on severity and whether medication intervention is implemented hiv infection rates by city purchase cheap vermox online. When present hiv infection rate us vermox 100 mg order on-line, strabismus should be managed with eye patching examples of antiviral drugs buy cheap vermox 100 mg on line, vision therapy hiv infection africa generic vermox 100 mg without a prescription, or surgery to avoid amblyopia and aggravation of visual processing problems anti viral hand gel uk trusted vermox 100 mg. Typically, individuals would be treated after two documented seizures with anticonvulsants that are least likely to cause sedation (Berry-Kravis et al. When symptoms of obstructive sleep apnea are clearly present, management with tonsillectomy/adenoidectomy is indicated. It is important to encourage healthy diet, calorie restriction when necessary, and exercise programs for 30­40 minutes four to five times a week to minimize problems associated with increased weight. Bailey and colleagues (2017) are conducting a pilot newborn screening study that could enable early identification and targeted intervention. Relative weaknesses include visuospatial skills, working memory, processing of sequential information, and attention (Dykens, Hodapp, & Leckman, 1987) while there are relative strengths in visual memory, simultaneous processing, and long-term memory (see Chapters 13 and 20). Decline in standard scores for intelligence and adaptive function does not reflect regression but rather failure to keep pace with the normal rate of intellectual development. Anxiety disorders, including generalized anxiety and particularly specific phobias and social anxiety (Cordeiro, Ballinger, Haberman, & Hessl, 2011; Freund et al. The effects of this hyperarousal are widespread and include high levels of motor activity. Aggression typically occurs later, frequently during the pubescent and postpubescent periods (Bailey et al. Treatments that modify the underlying disorder would be an extremely important advance (see Box 15. These studies have been plagued by uncertainties about how to optimally demonstrate treatment effects and disease modification in a clinical trial setting for a population of individuals with developmental disabilities (BerryKravis et al. Work is ongoing to resolve these issues so that in the future, treatment to reverse the underlying disorder will eventually replace or complement supportive treatment. Malocclusion and the need for orthodontic treatment in 8-year-old children with Down syndrome: A crosssectional population-based study. No change in the age of diagnosis for fragile X syndrome: Findings from a national parent survey. Conversational characteristics of children with fragile X syndrome: Repetitive speech. Prevalence of pressure equalization tube placement and hearing loss in children with Down syndrome. Mavoglurant in adults and adolescents with fragile X syndrome: Results of randomized, double-blind, placebo-controlled trials. Updated report on tools to measure outcomes of clinical trials in fragile X syndrome. Cooccurring medical conditions in adults with Down syndrome: A systematic review toward the development of health care guidelines. Difference in age at regression in children with autism with and without Down syndrome. A theoretical analysis of the role of hyperarousal in the learning and behavior of fragile X males. Mental Retardation and Developmental Disabilities Research Reviews, 1(4), 286­291. Estimates of the live births, natural losses, and elective terminations with Down syndrome in the United States. Learning to read in regular and special schools: A follow-up study of students with Down syndrome. Changing paradigms, in Down syndrome: the first international conference of Trisomy 21 Research Society. Congenital heart disease in children with Down syndrome: What has changed in the last three decades Oral health in children with physical (cerebral palsy) and intellectual (Down syndrome) disabilities: Systematic review 1. Hypoglossal nerve stimulation in adolescents with Down syndrome and obstructive sleep apnea. Strengths and weaknesses in the intellectual functioning of males with fragile X syndrome. Longitudinal changes in cognitive and adaptive behavior in fragile X females: A prospective multicenter analysis. Longitudinal study of cognitive abilities and adaptive behavior levels in fragile X males: A prospective multicenter analysis. Congenital heart surgery outcomes in Down syndrome: Analysis of a national clinical data base. Intention tremor, parkinsonism, and generalized brain atrophy in male carriers of fragile X. Twenty-five years after early intervention: A follow-up of children with Down syndrome and their families. The influence of environmental and genetic factors on behavior problems and autistic symptoms in boys and girls with fragile X syndrome. Proceedings of the National Academy of Sciences of the United States of America, 99, 7746­7750. The arthropathy of Down syndrome: An underdiagnosed and under-recognized condition. Prevalence and characteristic of concurrent Down syndrome in patients with moyamoya disease. Genotype, molecular phenotype, and cognitive phenotype: Correlations in fragile X syndrome. Prevalence, nature, and correlates of sleep problems among children with fragile X syndrome based on a large scale parent survey. Employment in adults with Down syndrome in the United States: Results from a national survey. Increased prevalence of renal and urinary tract anomalies in children with Down syndrome. Etudes des chromosomes somatiques de neufenfants mongoliens [Study of somatic chromosomes of new children with mongolism]. Energy expenditure in children with Down syndrome correcting metabolic rate for movement. The neurocognitive phenotype of female carriers of fragile X: Additional evidence for specificity. Profiles of receptive and expressive language abilities in boys with comorbid fragile X syndrome and autism. Indirect genetic effects and the early language development of children with genetic mental retardation syndromes: the role of joint attention. The efficacy of adenoidectomy for obstructive sleep apnea in children with Down syndrome: A systematic review. Outcome of Down syndrome associated acute lymphoblastic leukaemia treated on a contemporary protocol. Characterization of thyroid abnormalities in a large cohort of children with Down syndrome. Between desperation and disability right: A narrative analysis of complementary/alternative medicine use by parents for children with Down syndrome. Prevalence of autism spectrum disorder phenomenology in genetic disorders: a systematic review and meta-analysis. Early communication, symbolic behavior, and social profiles of young males with fragile X syndrome. A community cross-sectional survey of medical problems in 440 children with Down syndrome in New York State. American Journal of Medical Genetics Part B, Neuropsychiatric Genetics, 159B, 589­597. Conversational analyses of males with fragile X, Down syndrome, and autism: Comparison of the emergence of deviant language. Self-injurious behavior and fragile X syndrome: findings from the national fragile X survey. Assessment of coeliac disease prevalence in patients with Down syndrome in Poland-A multi-centre study. Importance of a specialty clinic for individuals with genetic conditions: Fragile X syndrome as a model. Down syndrome disintegrative disorder: New-onset autistic regression, dementia, and insomnia in older children and adolescents with Down syndrome. Hearing in school-aged children with trisomy 21-results of a longitudinal cohort study in children identified at birth. Batshaw Upon completion of this chapter, the reader will Understand the term inborn error of metabolism Know the differences among a number of these inborn errors, including amino acid disorders, organic acidemias, fatty acid oxidation defects, mitochondrial disorders, peroxisomal disorders, and lysosomal storage diseases Identify the characteristic clinical symptoms and diagnostic tests for these disorders Know which of these disorders have newborn screening tests available Recognize different approaches to treatment Understand the outcome and range of developmental disabilities associated with inborn errors of metabolism the food we eat contains fats, proteins, and carbohydrates that must be broken down into smaller components and then metabolized by thousands of enzymes that maintain body functions. The result may be organ damage or dysfunction (often the brain), varying degrees of disability, or even death. In contrast, in children with congenital adrenal hypoplasia, an inherited enzyme deficiency leads to decreased production of certain steroid hormones. Females with this deficiency may be born with ambiguous genitalia because they produce abnormal amounts of the male steroid sex hormone (testosterone) in utero (Auchus, 2015; Turcu & Auchus, 2015). His parents became concerned, however, when at 1 year of age he had made no further progress. If anything, he seemed less steady in sitting and was uninvolved with his surroundings. Darnel was no longer able to roll over; he was very floppy and did not appear to respond to light or sound. His pediatrician referred Darnel to a genetics clinic, where an extensive workup eventually diagnosed him as having Tay-Sachs disease, a genetic disorder affecting lipid metabolism in the brain. Over the next 3 years, Darnel slipped into an unresponsive condition and required tube feeding. As a result of the diagnosis, his parents decided to undergo prenatal diagnosis in subsequent pregnancies. They now have two healthy children, and his mother underwent one termination of a fetus that was affected. This enzyme block leads to the accumulation of a toxic substrate and/or the deficient synthesis of a product needed for normal body function. Not all inborn errors of metabolism can be as effectively treated, however, because of delays in diagnosis or lack of an effective intervention. This article provides examples from a range of inborn errors of metabolism to explain diagnostic and therapeutic advances that are improving the outcome of people with these disorders. Thought Questions: As a metaphor for inborn errors of metabolism, imagine that the human body is an efficiently run city and that each road represents a chemical reaction catalyzed by a unique enzyme. How would this differ if it were a major highway that was blocked versus a small road How about if only two lanes of the highway were obstructed rather than the whole highway What would happen to the parking lot of the car manufacturing plant if its exit were obstructed Though Lisa struggled to find independence, her providers would remind her of the importance of "diet for life. She was unfortunately found to be a nonresponder to the pharmaceutical interventions available, requiring her to continue her strict dietary regimen. In fact, over 300 additional disorders have been identified in the last decade alone (Saudubray et al. The majority of these enzyme deficiencies are inherited as autosomal recessive traits, in which both parents carry a genetic change on one of their two copies of the gene (see Chapter 1). These carriers are healthy and develop typically due to the normal second copy of the gene. Individuals who are affected usually inherit two abnormal genes and have no normal version. A few metabolic disorders are transmitted as X-linked disorders or through mitochondrial inheritance (see Chapter 1). Prenatal diagnosis is available for Inborn Errors of Metabolism 287 most of these disorders (see Chapter 4). Although there are many different ways of categorizing these disorders, inborn errors of metabolism are often divided into 1) those that are clinically "silent" for a relatively long period before being recognized, 2) those that produce acute metabolic crises, and 3) those that cause progressive organ damage or dysfunction (Table 16. Among the silent disorders are certain abnormalities involving amino acids or organic acids. Disorders producing acute toxicity include certain inborn errors in the metabolism of small molecules, including ammonia, amino acids, organic acids, fatty acids, lactic acid, and simple sugars (Levy, 2009a, 2009b; Vernon, 2015). Inborn errors of metabolism causing progressive disorders include most glycogen storage and peroxisomal and lysosomal storage disorders. The specific names of the disorders are often derived from their deficient enzyme. In both cases, an infant who is affected is generally protected in the womb because the maternal circulation can remove the toxic chemical or provide the missing product. After birth, however, the infant must rely on his or her own metabolic pathways, and if they are abnormal, toxicity occurs rapidly or over time, depending on the severity of the defect. These molecules are stored in the cells of various body organs, including the brain, where they ultimately cause damage, leading to physical or neurological deterioration. Many of the small-molecular disorders, both those that are silent and those with acute symptoms, are treatable with fairly good outcome if treatment is started early. The large-molecular disorders, with a few notable exceptions, have been far more difficult to treat, and their outcome generally remains poor. Clinical Manifestations the clinical manifestations of the various inborn errors of metabolism fall along a spectrum, from lack of overt symptoms to life-threatening episodes. Instead, children who are untreated develop at a slower-than-expected rate and are usually not identified as having intellectual disability until later in childhood. Severely affected infants will present by a few days of age with vomiting, respiratory distress, and lethargy before slipping into coma.

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His language tends to be somewhat repetitive hiv infection mouth ulcers buy generic vermox 100 mg on-line, and he often uses phrases out of context that he has heard on television hiv infection symptoms ppt vermox 100 mg order without prescription. This article utilizes person-first language for consistency with common professional practice and other sections of this text symptoms of hiv infection in toddlers discount vermox 100 mg line. He often walks up to adults and other children and touches them or tries to hand them a toy even if he has never met them before antiviral drugs pdf cheap vermox 100 mg buy on-line. He and his younger brother like to play with cars and sometimes act out their favorite movies together antiviral herbs purchase vermox master card. Diego often follows other children around on the playground at school, but he struggles to play cooperatively with them. If other children do not want to play "his way," Diego often becomes upset and has a tantrum. He gets very upset when he has to have his hair or nails cut, and he covers his ears and hides whenever his mother uses the vacuum cleaner. Diego is rarely able to sit still for more than a few minutes and struggles to pay attention at school. His parents tried giving him a stimulant medication that his pediatrician prescribed, but they stopped the medication after he became very anxious and agitated. His parents and teachers are proud of his early academic skills, but they are worried about his problems participating in classroom activities and getting along with other children. Although quite pleasant and calm, he did not engage with the assessment tasks and spent most of the time in repetitive play, including opening and closing the doors and watching toys as he dropped them to the floor. He showed little progress with language, and his family decided to introduce an augmentative/alternative communication device at the age of 5. The use of this device was initially focused on allowing Michael to request preferred activities and foods, but, as Michael became more comfortable, it evolved to include everyday routines. Despite her early arrival, she had a fairly uneventful stay in the neonatal intensive care unit and was able to go home after 6 weeks, breathing and eating on her own. To their delight, she appeared to meet all of her developmental milestones on time. She had a hard time adjusting to any changes in the routine, often becoming upset and quickly spiraling into a full meltdown when there was a minor change to the schedule. She was also a bit slow with some fine motor skills, including cutting and drawing. His parents became concerned around the age of 9 months, when he was not babbling like other children his age. He was seen for his first assessment at 12 months, with findings of appropriate gross and fine motor skills and delays in both expressive and receptive language. Following this initial assessment, Michael began receiving early intervention services, including intensive speech and language therapy. At follow-up assessments at 18, 24, and 30 months, Michael showed slow but steady progress with language and, by the age of 2½, was using a few consistent signs. However, at his 36-month assessment, Michael showed Autism Spectrum Disorder 319 her dolls and toy ponies, she tended to repeat the same scenes over and over. She was happy to have her parents play with her if they would stick with the script, but she got upset if other children tried to join her. Because of these concerns, Kay started participating in play therapy and occupational therapy. As she progressed through elementary school, Kay was eager to make friends and have play dates. However, when other children came over, she typically greeted them enthusiastically but then went off to play on her own. Although the other girls in her class had moved on to different types of play, Kay still preferred to act out scenes with her toy ponies and had expanded that interest to reading every book she could find about horses. The meltdowns continued to occur on a regular basis at school and at home had become more intense. In particular, when doing homework Kay needed to have everything "just so" and would become distraught and unable to continue if there was a single mistake or problem that seemed too hard. Although she seemed to have a strong vocabulary and learned to read easily, she had difficulty paying attention during group lessons and had a hard time answering questions about what she had read. With these ongoing difficulties interfering with her school work and creating a stressful home environment, Kay was referred for a speech and language assessment. Although her core language skills were age appropriate, the speech-language therapist was concerned about her pragmatic or social language and recommended a more comprehensive, neuropsychological assessment. Still, they all share two core domains of symptoms: impairments in social communication and restricted/repetitive patterns of behavior and interest (see diagnostic criteria in Table 18. Once a diagnosis is established, what recommendations should families receive about further evaluation and intervention How can providers prepare families for some of the changes and struggles that occur as children with autism develop Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text): 1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers. Specify current severity: Severity is based on social communication impairments and restricted, repetitive patterns of behavior. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text): 1. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior. Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life). Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder. Specify if: With or without accompanying intellectual impairment With or without accompanying language impairment Associated with a known medical or genetic condition or environmental factor (Coding note: Use additional code to identify the associated medical or genetic condition. With catatonia (refer to the criteria for catatonia associated with another mental disorder) (Coding note: Use additional code 293. Impairments in core language may persist throughout the lifespan, with an estimated 30% of individuals with autism classified as minimally verbal in adulthood (Tager-Flusberg & Kasari, 2013). This is particularly true for individuals diagnosed with Asperger syndrome, who often identify more strongly with this label due in part to its more positive associations with intelligence and savant-like skills in the media and society at large. Among those with intact core language skills, impairments in higher-order language, such as language organization, verbal reasoning, and pragmatic skills, are common (Boucher, 2012). Impairments in both verbal and nonverbal communication skills contribute to broader difficulties in social-emotional reciprocity. In early childhood, these deficits often manifest through reduced joint attention, which is the ability to share a common point of reference, such as a child pointing to an airplane flying overhead and saying "Look! As children age, deficits in social-emotional reciprocity are evident through more complex difficulties and as social cognition deficits. Children and adults on the spectrum commonly struggle to initiate and maintain reciprocal conversations with others (Paul, Orlovski, Marcino, & Volkmar, 2009). Reduced social-emotional reciprocity in turn leads to difficulties in initiating and maintaining relationships with others, particularly with peers (Travis, Sigman, & Ruskin, 2001). In addition, further research is needed to understand appropriate assessment techniques and treatments for this new diagnosis (Norbury, 2014). Some may prefer to be alone and actively avoid playing with peers, while others are highly socially motivated but struggle to make and keep friends due to their social skill deficits. In early and middle childhood, deficits in play skills contribute to difficulty developing peer relationships (Jordan, 2003). As these children age and move into adolescence and adulthood, the overwhelming majority express an interest in dating and sexual activity but are less likely than their non-autistic counterparts to develop romantic relationships, particularly long-term relationships (Byers, Nichols, & Voyer, 2013; Strunz et al. This can extend to food selectivity, rituals related to daily routines, and difficulties with transitions and changes in their usual environments. Repetitive motor mannerisms, such as hand flapping or intense spinning, may also be observed, as well as repetitive use of objects, such as lining things up or becoming intensely focused on the parts of an object. Young children with autism may have attachments to unusual items rather than to soft or cuddly toys. These may include insensitivity to some inputs, such as pain or temperature, or overreactions to other inputs, such as noises, touch, or odors. For example, a child may cover his or her ears and scream in response to certain sounds, such as a vacuum cleaner or blender, or refuse to have his or her nails cut or hair trimmed. The same child may also actively seek out other sensory experiences by staring out of the corners of their eyes, sniffing objects without a clear scent, or stroking surfaces or textures. Individuals may develop intense interests in and knowledge of highly specific topics. Restricted/repetitive behaviors and interests often change in their presentation, focus, and intensity over the lifespan. For example, an intense interest may help an individual to identify a career path or develop friendships around shared interests. Likewise, although strict adherence to routines may interfere with functioning, it may also reduce anxiety by ensuring that an individual knows what to expect. Severity levels for autism spectrum disorder Severity level Level 3 "Requiring very substantial support" Social communication 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. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches. Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited to narrow special interests, and who has markedly odd nonverbal communication. 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. For example, a person who is able to speak in full sentences and engages in communication but whose to-and-fro conversation with others fails and whose attempts to make friends are odd and typically unsuccessful. Restricted, repetitive behaviors Inflexibility of behavior, extreme difficulty coping with change, or other restricted/ repetitive behaviors markedly interfere with functioning in all spheres. Level 2 "Requiring substantial support" Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Inflexibility of behavior causes significant interference with functioning in one or more contexts. Level 1 "Requiring support" Reprinted with permission from the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (Copyright ©2013). Clinicians are also encouraged to specify the severity of the condition using one of three severity levels (Table 18. For this reason, autistic traits have been commonly found in professionals working in math, computer science, and other sciences; adults on the spectrum may be particularly likely to excel in these fields (Baron-Cohen, Wheelwright, Skinner, Martin, & Clubley, 2001). Some symptoms may begin to emerge in the first year of life, though these are not commonly noted other than in severe cases or by parents with a family history. Parents may describe an infant as being very difficult to soothe or as being quite content to be left alone. They may begin to notice that the infant is less likely to make eye contact or babbles less frequently than other children of the same age. By far, the most common symptom parents report as their initial concern is a delay in language skills, Strengths of the Autism Spectrum In addition to the challenges experienced by individuals with autism, it should also be noted that there are several strengths associated with this condition. Prominent symptoms and challenges by age Birth­12 Months Reduced eye contact and gaze to faces Lack of social smile Reduced babbling and vocalizations Unusual sensory responses Impaired motor coordination 12­24 Months Language delays Lack of gestures Poor joint attention Repetitive play and behaviors No response to name Possible developmental regression 2­5 Years Reduced peer interactions Unusual or stereotyped language Deficits in pretend play Unusual and restricted interests Insistence on sameness Middle Childhood Deficits in reciprocal conversation Poor friendship quality Problems with attention and learning Adolescence Problems with executive functioning Poor understanding of social cues Poor hygiene and self-care Social isolation and bullying Adulthood Under-employment Housing challenges Difficulties with activities of daily living Few and poor quality relationships including acquisition of first words and phrases. Parents may also notice unusual play at this age, such as spending a significant amount of time lining up or banging objects and failing to engage in early functional and symbolic play. They may engage in very little pretend play or only do so by carefully reenacting favorite movies or television shows. Children at this age may be easily overwhelmed by transitions and upset by changes in routine or new experiences. Preschool teachers often describe a child who has frequent tantrums, struggles to participate in group activities, and has strong preferences for repeating the same activities over and over. Some children, however, particularly those who have strong intellectual and language abilities or who have known medical or genetic conditions. During the middle childhood years (elementary and early middle school), problems with attention and academic skills may be most prominent. Difficulties with writing and reading comprehension are common, given the demands for language and executive functioning involved in these tasks. Children who were able to play with peers in the preschool period may begin to struggle more with friendships at this age as the social interactions become more complex.

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