Exploring spirituality and quality of life in individuals who are deaf and have intellectual disabilities.

PURPOSE: While positive contributions of religion and spirituality (R/S) to quality of life (QOL) are confirmed by a growing body of evidence, only limited research has involved people with intellectual disabilities and so far, no studies included prelingually deaf individuals with intellectual disabilities. This study explores the role of R/S in people with intellectual disabilities and deafness living in three therapeutic living communities specifically adapted to their needs. METHODS: Forty-one individuals (mean age: 46.93 years, 43.9% female) with prelingual deafness and mild to moderate intellectual disability participated in structured sign language interviews adapted to their cognitive-developmental level, regarding their QOL, individual spirituality and participation in spiritual practices in the community. Participants' QOL was assessed with an established short measure for QOL (EUROHIS-QOL) adapted to easy-to-understand sign language. With 21 participants, qualitative interviews were conducted. In addition, proxy ratings from caregivers were obtained. RESULTS: The participants' ratings of their individual spirituality (r = 0.334; p = 0.03) and spiritual practices-in-community (r = 0.514; p = 0.00) correlated positively with their self-reported QOL. Qualitative findings illustrate the importance of R/S and give insights into R/S concepts and practices. CONCLUSIONS: Personal spirituality and participating in spiritual practices are positively related to self-reported quality of life in deaf individuals with intellectual disability (ID). As a consequence, access to spiritual and religious services should be included in comprehensive programs and society at large.

OpenNotes: Anticipatory Guidance and Ethical Considerations for Pediatric Psychologists in Interprofessional Settings.

OBJECTIVES: The 21st Century Cures Act included an "OpenNotes" mandate to foster transparent communication among patients, families, and clinicians by offering rapid electronic access to clinical notes. This article seeks to address concerns about increased documentation burden, vulnerability to patient complaints, and other unforeseen consequences of patients having near-real-time access to their records. METHODS: This topical review explores both extant literature, and case examples from the authors' direct experience, about potential responses/reactions to OpenNotes. RESULTS: The ethics of disclosing medical information calls for nuanced approaches: Although too little access can undermine a patient's autonomy and the capacity for truly egalitarian shared decision-making, unfettered access to all medical information has significant potential to harm them. Suggested strategies for mitigating risks in premature disclosure include patient and provider education and "modularizing" sensitive information in notes. CONCLUSION: The OpenNotes era has ushered in the possibilities of greater patient and family collaboration in shared decision-making and reduced barriers to documentation sharing. However, it has raised new ethical and clinician documentation considerations. In addition to clinician education, patients and families could benefit from education around the purpose of clinical documentation, how to utilize OpenNotes, and the benefits of engaging in dialogue regarding the content and tone of documentation.

The pediatric dermatology psychosocial screen: Promoting psychosocial coping and early identification of mental illness in pediatric dermatology patients.

BACKGROUND/OBJECTIVES: The psychosocial impact of pediatric skin conditions can be difficult to assess accurately. There is currently no way to formally screen and provide stepped care specifically for psychosocial dysfunction or mental illness during dermatology clinics. The Psychosocial Screening Tool for Pediatric Dermatology (PDPS) was designed to identify patients in need of psychosocial support and to promote multidisciplinary care. METHODS: The PDPS was studied at Boston Children's Hospital outpatient dermatology clinics. A pilot study was conducted with 16 participants to assess language and applicability. The validation study included 105 participants aged 8-19 years. Participants completed the PDPS, the Children's Depression Index 2 Short (CDI-2 Short), and three subscales of the Behavior Assessment System for Children 2 (BASC-2) to assess content validity. Model fit from confirmatory factor analysis was evaluated using the root-mean-square error of approximation (RMSEA), Comparative Fit Index (CFI), and Tucker-Lewis Index (TLI). RESULTS: Proper model fit and criterion validity were demonstrated through positively correlating the PDPS and the CDI-2 Short (CFI = 0.972, TLI = 0.969, RMSEA 5.3%) and BASC-2 subscales (RMSEA = 7.2%, CFI = 0.975, TLI = 0.969). Patient resilience was positively correlated with higher scores in each psychosocial domain. CONCLUSIONS: The PDPS is an effective screening tool for resilience versus need for early behavioral/mental health intervention in dermatology patients aged 8-19. The PDPS identifies psychosocial dysfunction and problems patients may not disclose otherwise (bullying, self-harm, social supports, neurodermatitis, and body dysmorphic disorder). Additionally, patients can directly indicate interest in various psychosocial health resources on the PDPS, guiding practitioners in providing comprehensive care.

Implementing Group Parent Training in Telepsychology: Lessons Learned During the COVID-19 Pandemic.

OBJECTIVE: We recently transitioned from in-person delivery of a brief behavioral parent intervention to telepsychology delivery to meet families' needs during the COVID-19 pandemic. In this topical review, we describe how we used treatment fidelity as a guiding principle to orient adaptations for telepsychology, as well as preliminary findings and early lessons learned in this implementation. Methods: Using rapid-cycle quality improvement methods, we adapted a brief parent training group (Bootcamp for Attention-Deficit/Hyperactivity Disorder; BC-ADHD) to three groups of caregivers (i.e., 5-7 families) of school-aged children with ADHD (n = 20; 85% males). Families were from the following ethnic backgrounds: 75% White non-Hispanic, 15% White Hispanic, and 10% Black. Clinicians completed measures on their implementation experience. Observers completed measures on content/process fidelity and attendance. Caregivers completed measures on demographics, treatment satisfaction, and telepsychology experience. RESULTS: Telepsychology BC-ADHD can be implemented with comparably high levels of content and process fidelity and treatment satisfaction to in-person groups; and it appears to be feasible and acceptable to caregivers. Caregiver and clinician qualitative feedback revealed themes of appreciating the convenience of telepsychology, while experiencing some challenges in relating to others and sharing over video. CONCLUSIONS: When treatment fidelity is used as a guiding tool, telepsychology parent training groups can be delivered with high fidelity and appear to be acceptable and feasible to caregivers and clinicians. Future research using larger and more diverse samples, multimethod and multi-informant measurement approaches, and controlled designs is needed to further assess the generalizability and efficacy of telepsychology parent training groups.

Development of Deaf Adults with Intellectual Disability in a Therapeutic Living Community.

People with intellectual disabilities who are deaf face obstacles participating in social environments that do not take into account their need for accessible visual communication. In the present case series, we describe the development of the adaptive skills profiles of eight participants in a fully inclusive therapeutic living community, designed specifically for people with developmental disabilities who are deaf and focused on supporting communication, social relationships, conflict resolution, and work satisfaction. Adaptive skills ratings collected at enrollment and twelve years later suggest increases in social awareness and community living, whereas personal care and homemaking showed relatively little change.

Topical Review: Transitional Services for Teens and Young Adults With Attention-Deficit Hyperactivity Disorder: A Process Map and Proposed Model to Overcoming Barriers to Care.

Objective: To provide a topical review of the personal vulnerabilities and systemic barriers facing transitional age young adults with attention-deficit hyperactivity disorder (ADHD), followed by a proposed model for overcoming those barriers. Methods: Drawing from a growing, but limited, literature on the topic, we outline a process map for identifying and troubleshooting barriers to care in this at-risk population. Results: Young adults with ADHD frequently lack the organizational skills, time management, prioritization, and persistence to manage their health care at an expected level of adult independence. These difficulties are compounded by a health-care system that has less time or fewer resources for supporting young adult patients. Conclusions: Recommendations for easing the transition from pediatric to adult care for late adolescents with ADHD include heavily leveraging the doctor-patient relationship, and capturing the young adult's attention through technologies that already absorb them.

Overlapping 16p13.11 deletion and gain of copies variations associated with childhood onset psychosis include genes with mechanistic implications for autism associated pathways: Two case reports.

Copy number variability at 16p13.11 has been associated with intellectual disability, autism, schizophrenia, epilepsy, and attention-deficit hyperactivity disorder. Adolescent/adult- onset psychosis has been reported in a subset of these cases. Here, we report on two children with CNVs in 16p13.11 that developed psychosis before the age of 7. The genotype and neuropsychiatric abnormalities of these patients highlight several overlapping genes that have possible mechanistic relevance to pathways previously implicated in Autism Spectrum Disorders, including the mTOR signaling and the ubiquitin-proteasome cascades. A careful screening of the 16p13.11 region is warranted in patients with childhood onset psychosis.

Treatment of Attention-Deficit/Hyperactivity Disorder in Adolescents: A Systematic Review.

IMPORTANCE: Although attention-deficit/hyperactivity disorder (ADHD) is highly prevalent in adolescents and often persists into adulthood, most studies about treatment were performed in children. Less is known about ADHD treatment in adolescents. OBJECTIVE: To review the evidence for pharmacological and psychosocial treatment of ADHD in adolescents. EVIDENCE REVIEW: The databases of CINAHL Plus, MEDLINE, PsycINFO, ERIC, and the Cochrane Database of Systematic Reviews were searched for articles published between January 1, 1999, and January 31, 2016, on ADHD treatment in adolescents. Additional studies were identified by hand-searching reference lists of retrieved articles. Study quality was rated using McMaster University Effective Public Health Practice Project criteria. The evidence level for treatment recommendations was based on Oxford Centre for Evidence-Based Medicine criteria. FINDINGS: Sixteen randomized clinical trials and 1 meta-analysis, involving 2668 participants, of pharmacological and psychosocial treatments for ADHD in adolescents aged 12 years to 18 years were included. Evidence of efficacy was stronger for the extended-release methylphenidate and amphetamine class stimulant medications (level 1B based on Oxford Centre for Evidence-Based Medicine criteria) and atomoxetine than for the extended-release α2-adrenergic agonists guanfacine or clonidine (no studies). For the primary efficacy measure of total symptom score on the ADHD Rating Scale (score range, 0 [least symptomatic] to 54 [most symptomatic]), both stimulant and nonstimulant medications led to clinically significant reductions of 14.93 to 24.60 absolute points. The psychosocial treatments combining behavioral, cognitive behavioral, and skills training techniques demonstrated small- to medium-sized improvements (range for mean SD difference in Cohen d, 0.30-0.69) for parent-rated ADHD symptoms, co-occurring emotional or behavioral symptoms, and interpersonal functioning. Psychosocial treatments were associated with more robust (Cohen d range, 0.51-5.15) improvements in academic and organizational skills, such as homework completion and planner use. CONCLUSIONS AND RELEVANCE: Evidence supports the use of extended-release methylphenidate and amphetamine formulations, atomoxetine, and extended-release guanfacine to improve symptoms of ADHD in adolescents. Psychosocial treatments incorporating behavior contingency management, motivational enhancement, and academic, organizational, and social skills training techniques were associated with inconsistent effects on ADHD symptoms and greater benefit for academic and organizational skills. Additional treatment studies in adolescents, including combined pharmacological and psychosocial treatments, are needed.

Clinical Psychology in the Era of Research Diagnostic Criteria (RDoC): Reconciling Individually-Focused Practice with a Broader Biopsychosocial Context.

There is growing consensus that diagnostic labels are insufficient to describe the individual child's psychiatric profile, much less inform the precise combination of interventions that will minimize the impact of risk and/or bolster protective factors over the course of a particular child's development. Moreover, investigations of neurobiological and genetic mechanisms associated with psychopathology have revealed considerable cross-diagnostic overlap, undermining the validity of models that propose a 1:1 relationship between risk and psychiatric disorder. Accordingly, recent publications have advocated for neurodevelopmental models that utilize trait-based measurement, as well as increased emphasis on integration of biological and experiential mechanisms. Despite an expanding body of literature supporting this conceptual shift, the practical implications remain unclear. In this special issue, we compile a collection of novel empirical research papers and reviews that build on the trans-diagnostic principles of the RDoC framework.

Profiles of Autistic Youth with and Without Co-occurring Behavioral Health and Neurodevelopmental Disorders: A Latent Class Analysis.

OBJECTIVE: Autism spectrum disorder (ASD) diagnosis relies on clinical observation and documentation, but the presence of comorbidities can affect diagnostic validity across clinicians and exacerbate access to timely care. This study used latent class analysis to optimize subgroup identification based on functional level and associated comorbidities using the Behavior Assessment System for Children, Third Edition (BASC-3), and Vineland Adaptive Behavior Scales, Third Edition (Vineland-3), in a pediatric population referred for autism evaluation. METHODS: This retrospective study reviewed clinical data extracted over a 3-year period (2018-2021). A latent class analysis was used to explore the presence of latent groups guided by the likelihood ratio test and fit indices. Additional analyses contrasted ASD and non-ASD groups on the BASC-3 and Vineland-3 variables. RESULTS: There were 191 included participants (mean age 65.9 months, 76.4% male), of whom over half (60.7%) had an ASD diagnosis. Using 185 cases, the exploratory latent class analysis showed the emergence of 4 distinct subgroups. Composition of classes varied on ASD diagnosis, neurodevelopmental difficulties, behavioral health concerns, and intellectual disability. When contrasting ASD and non-ASD groups, significant between-group differences were observed across Vineland-3 variables and BASC-3 adaptive skills subscales indicating poorer social and adaptive functioning. CONCLUSION: Latent class analysis of commonly used behavioral and adaptive measures can help distinguish between subgroups of pediatric patients referred for ASD evaluations and assist in triage of cases based on severity.

Developmental Delay and Behavior Challenges in an Internationally Adopted Child.

CASE: Jay is a 6-year-old boy who was referred to a multidisciplinary developmental clinic for evaluation because of speech/language delays and challenging behaviors. He attends kindergarten with an Individualized Education Program (IEP) supporting developmental challenges with speech/language, motor, and academic skills.Jay was reportedly born full-term after an uneventful pregnancy and lived with his biological family for several months before transitioning to institutional care. Shortly before his first birthday, he transitioned to the first of 3 foster homes. It is suspected that Jay experienced malnourishment, neglect, lack of appropriate supervision, and inappropriate levels of responsibility (e.g., providing care to an infant when he was a toddler) as well as limited language input while in foster care. Ages at which he attained developmental milestones are unknown, but he has displayed delays across all developmental domains, including speech/language development in his primary language, which is not English.Jay's adoptive parents report that he is learning English vocabulary well but has been noted to have occasional word-finding difficulties and errors in verb conjugation, pronoun use, and syntax in English. Behavioral concerns include impulsivity, hyperactivity, and aggression exacerbated by new or loud environments and transitions. Socially, he seems to be typically engaged with peers but lacks understanding of personal space/boundaries. His adoptive parents have also noted that he is very sensitive to the emotions of others around him, more irritable in the morning, fascinated by "scary" things, and seems to fear abandonment. During the initial months in his adoptive home, he had frequent night awakenings, fear of the dark, and aggression at bedtime, but all these concerns have improved with time.Neuropsychological testing was completed as part of the multidisciplinary developmental evaluation, and Jay demonstrated low-average cognitive abilities, delayed preacademic skills in all language-based areas, and receptive and expressive language delays. He was socially engaged during the evaluation. Ultimately, he was diagnosed with mixed receptive-expressive language disorder, attention-deficit/hyperactivity disorder, combined presentation, and unspecified trauma/stress-related disorder.Given what is known about Jay's early history, what factors would you consider in addressing his parents' concerns regarding his speech/language development and behavior challenges?

Complex ADHD Challenging Case: When Simple Becomes Complex: Managing Clinician Bias and Navigating Challenging Family Dynamics in a 6-Year-Old Girl with ADHD and Developmental Delays.

CASE: Layla is a 6.7-year-old girl diagnosed with attention-deficit/hyperactivity disorder (ADHD)-predominantly hyperactive/impulsive type-delayed adaptive skills, enuresis, unspecified malnutrition, and feeding difficulties. She presented to developmental-behavioral pediatrics (DBP) in January 2022 due to caregiver concerns for autism spectrum disorder (ASD).Layla lives in a polyamorous family with her biological mother and father, mother's partner whom Layla refers to as her uncle, and her 2 half-siblings. There is a maternal history of special education services, schizoaffective disorder, bipolar disorder, multiple sclerosis, Wolff-Parkinson-White syndrome, and ADHD. Layla's father is a veteran diagnosed with post-traumatic stress disorder. Layla's siblings, aged 5 and 9 years, have established diagnoses of ADHD, ASD, global developmental delays, behavioral concerns, and poor sleep. There is a history of adverse childhood experiences, including parental mental health, poverty, and involvement with child protective services. Acknowledgement and inclusion of all members of this diverse family structure, as well as consistent validation from the DBP and social worker, allowed a strong treatment alliance to form and the mother continued to contact the DBP clinic, even for those questions related to other specialties. A social worker received weekly calls from the mother sharing grievances related to feeling misunderstood and spoke about the assumptions she felt external providers made about her family, culture, and parenting styles. For example, she recalls the pediatrician commenting about their family structure being "confusing for the children" and describing their home as "chaotic," assumptions that may not have been made of nuclear family structures. Behavioral therapies were a repeated recommendation, but the mother verbalized not being interested in these options as she had participated in parent management training several years earlier and felt that the strategies taught were not applicable to her unique family structure, to which the clinician replied, "this is the standard recommendation for all children this age with disruptive behaviors." Although the mother was initially hesitant to trial medications, she eventually agreed that Layla's symptoms were negatively affecting her school performance, and the DBP initiated a stimulant medication.Layla's initial evaluation included a developmental history, behavioral observations, and standardized testing. The results from developmental testing demonstrated age equivalents between 4 and 6 years across gross motor, adaptive, visual motor, and speech-language domains.On observation, Layla was extremely active. During the visit, she walked over to her mother, made eye contact, and showed her the picture that she had drawn. She engaged in imaginary play, reciprocal conversation, and responded to social bids. The mother felt strongly that Layla had ASD and reported symptoms such as motor stereotypies (hand flapping), covering ears with certain noises/sounds, and rigidity when it came to things being a certain way or a certain color. These behaviors did not occur in the initial or subsequent clinic visits with DBP, her general pediatrician, or during other outside evaluations the mother pursued. The DBP felt strongly that Layla was mimicking her siblings' symptoms and provided ongoing education regarding ADHD symptomology.In terms of behavior management, the mother did not attempt to redirect Layla's behaviors during the initial clinic visit and in subsequent visits, and both adult men yelled loudly, clapped, and hit their hands on the table as a form of redirection. The mother continued to voice her diagnostic disagreement with the DBP and the pediatrician and insisted that Layla met the criteria for ASD. When the mother reviewed the report, a statement insinuating that Layla's behaviors were "understandable given parental inconsistency and complicated family structure" upset her.What factors would you consider when thinking about caregiver disagreement with the diagnosis and treatment plan? Does diagnostic overshadowing apply here?

Co-occurring Epilepsy and Attention-Deficit/Hyperactivity Disorder in a 6-Year-Old Boy.

CASE: "Andrew" is a 6-year-old, right-handed, cisgender boy who presents for neuropsychological testing to determine whether he meets criteria for attention-deficit/hyperactivity disorder (ADHD). Andrew's parents report that he is easily distracted, has poor concentration, and is unable to sustain attention for discrete periods of time. Andrew is the product of an uncomplicated pregnancy and delivery, and there were no reported concerns in the postnatal period. Andrew met all of his language and motor milestones on time. He was described as having an "easy" temperament in his infancy and toddler years. Difficulties with attention started in preschool in that Andrew was described as frequently "getting lost" in his play or the task he was working on. He was easy to redirect and responded to cues and reminders. Socially, Andrew was described as friendly but not always "picking up on social cues." Andrew's kindergarten teachers first noted that sometimes Andrew would "blank out" and appear to stare off, which was attributed to inattention. His teachers brought their concerns to Andrew's parents, and his parents began to observe Andrew more carefully and noted that these episodes also occurred at home daily. When queried, his parents reported that these episodes would last 4 to 5 seconds and Andrew would not respond to his name being called or to being physically touched. Andrew's medical history, and that of his immediate and extended family, is unremarkable. Routine hearing and vision screenings are also unremarkable. There are no reports of head injuries or concussions. Andrew's gait is stable, and there are no signs of motor weakness. There are no reports of sensory seeking or avoiding behaviors. There are no reports of witnessing or experiencing trauma; motor or vocal tics; or compulsions, ritualized behaviors, or restricted interests.Testing revealed high average verbal comprehension skills, average perceptual and fluid reasoning, and lower end of average working memory and processing speed. During testing, the examiner noted a rapid eye flutter, which Andrew did not see to recognize himself but did ask the examiner to repeat the previous question. Parent and teacher rating scales of emotional and behavioral functioning showed elevations in the areas of inattention and adaptability and 1 scale of executive functioning noted elevations in task monitoring but no other difficulties. Socially, Andrew is well liked by his peers, although he can present as "silly." He has many same-aged friends and enjoys group activities. His parents have been hesitant to get him involved in sports because he has been known to have these staring episodes right after competing in sporting events. He also tends to have them more often during the school week when he has less sleep, which his parents attribute to having a difficult time falling asleep at night. What would you do next?

Irritability as a Transdiagnostic Risk Factor for Functional Impairment in Autistic and Non-autistic Toddlers and Preschoolers.

Trait irritability in toddlerhood is a powerful risk factor for later internalizing and externalizing challenges in non-autistic children, but the predictive clinical utility of irritability is unknown in autism. Irritability is a trait-level emotional response (i.e., frustration) to a blocked goal and is one source of disruptive behavior. Irritability has two facets: Frustration is the degree to which emotion is elevated after a blocked goal, while soothability is the rate of recovery from peak distress. We aimed to: (1) compare and describe the two facets of irritability in non-autistic and young autistic children, and (2) assess whether children's reward sensitivity and executive function moderate the relation between irritability and clinical symptoms. Participants were 90 autistic (n=43) and non-autistic (n = 47) 2- and 4-year-olds. Autistic children did not have different levels of frustration but were more difficult to soothe compared to non-autistic children, according to parents. Further, frustration and soothability were less strongly correlated for autistic compared to non-autistic children. For all children, executive function (specifically, inhibition) moderated, or ameliorated the strength of, the relation between irritability (both soothability and frustration) and externalizing challenges. This study provides evidence for irritability as a transdiagnostic risk factor for clinically significant emotion regulation challenges. Further, the effect of trait irritability may be ameliorated by children's executive function in a transdiagnostic manner. Future work should examine the unique aspects of soothability to how irritability presents within autism, as well as evaluate and modify emotion regulation interventions for autistic toddlers and preschoolers.

Complex ADHD Challenging Case: Managing Co-Occurring Attention-Deficit Hyperactivity Disorder and Congenital Heart Disease with a Limited Medication Formulary: A Case from Mexico.

CASE: DL is an 8-year-old Mexican boy with a posterior atrial septal defect and partial anomalous pulmonary venous return of the right lower pulmonary vein with resultant right heart dilation with normal right ventricular systolic and diastolic function and no arrhythmias. Surgical repair was deferred, and DL's condition was being medically managed with furosemide 0.5 mg/kg BID and spironolactone 0.5 mg/kg BID.DL presents for developmental assessment due to poor performance in school following a lifting of COVID-19 pandemic restrictions and return to in-person classes. He has been attending full-time classes for 3 months without improvements in math, reading, and writing skills. Current attentional concerns at school include an inability to complete tasks without getting distracted by minimal stimuli and highly impulsive behavior.At the first assessment, DL was performing below grade expectations (e.g., reading by syllable without text comprehension, demonstrating preoperational addition and subtraction skills, inability to take dictation)-all of which was viewed as negatively impacted by attentional deficits. DL met DSM-5 criteria for ADHD, predominantly inattentive type. He was started on 10-mg immediate-release methylphenidate PO at 8 am with breakfast and a second dose of 10-mg immediate-release methylphenidate PO 4 hours after the first dose.After a month, at the first follow-up consultation, improvement in attention span, impulsivity, and school performance were observed, including reading skills and math proficiency. However, DL's mother raised concerns about circumoral cyanosis and acrocyanosis in the fingers of both hands after playing outside. These signs were not previously observed. During physical examination at the same visit, heart rate, blood pressure, and oximetry were within baseline ranges and his cardiac examination was unchanged. DL's dosage of methylphenidate was lowered to 10-mg immediate-release methylphenidate PO QD in the mornings with breakfast (8 am).DL did not return to clinic for another 2 months, having discontinued the medication after 2 months of treatment given financial limitations. His mother reported that DL's exertional circumoral cyanosis and acrocyanosis resolved while he was off medication. However, she observed an increase in inattentive symptoms and impulsivity and decline in his academic skills. She asked if our team was able continue the treatment despite the drug side effects, since she believed the benefits outweighed the disadvantages.Given these concerns, the team requested an updated cardiology assessment. The Cardiologist recommended discontinuation of methylphenidate and recommended follow-up with cardiothoracic surgery for reassessment of the surgical timeline.Given the limited treatment options in Mexico, what would you do next as the treating developmental-behavioral clinician…?

Complex Attention-Deficit/Hyperactivity Disorder in a Bilingual Child with Down Syndrome and Intellectual Disability.

CASE: Maria is an 8-year-old girl with Down syndrome, described by her mother as an affectionate and social child, who was referred to developmental-behavioral pediatrics by her pediatrician because of increasing aggressive behaviors and inattention.Maria was 5 pounds at birth, delivered full-term by cesarean section, and hospitalized for 1 month after delivery because of feeding issues that required a nasogastric (NG) tube. Maternal age was 24 years, pregnancy was uncomplicated, and there were no reported prenatal exposures to substances. Additional medical history includes corrective cardiac surgery at age 11 months, mild-to-moderate hearing loss in 1 ear, and myopia.At the time of Maria's presentation to developmental-behavioral pediatrics, she was in third grade and had an IEP with placement in a substantially separate multigrade classroom and inclusion for special classes such as music and art. She had multiple academic goals and accommodations for behaviors such as eloping from class, shoving, and growling at adults; communication Picture Exchange Communication System (PECS); and extended time to complete assignments. Previously, she had attended an inclusion setting with a 1:1 aide. Maria is followed annually at a specialty clinic that focuses on the health needs of children with Down syndrome. At home, Maria's parents speak primarily Spanish, while her 2 older brothers speak primarily English. Maria has been using 3-word phrases since she was 6 years old and understands some American Sign Language. She also uses a PECS book for communication.During the visit, Maria was notably fidgety, frequently interrupted the parent interview despite having toys to play with, and became aggressive-hitting, kicking, pushing, and shoving-when she did not want to comply with directives. She used mostly single words and a variety of gestures to communicate. Both the parent-completed and teacher-completed Conners-3 (Long Version) produced elevated T-scores (>70) in the domains of inattention, hyperactivity/impulsivity, defiance/aggression, peer relations, Global Index scale, DSM-5 Hyperactive/Impulsive symptom scale, and DSM-5 Conduct Disorder symptom scale. The teacher endorsed full criteria for attention-deficit/hyperactivity disorder, consistent with combined presentation, and the parent endorsed symptoms in a similar pattern. Methylphenidate (2.5 mg) was trialed but tolerated poorly when it was titrated to 5 mg. Maria's mother reported that Maria's focus was somewhat better, but she was easily brought to tears and "not herself."What would be the next steps in Maria's evaluation/treatment? Could there be reasons for her worsening behavior other than a primary attention disorder?

Innovations in Practice: Preliminary evidence for effective family engagement in treatment for child traumatic stress-trauma systems therapy approach to preventing dropout.

BACKGROUND: This study aimed to obtain preliminary evidence for the extent to which a novel intervention embedded within a systems-oriented treatment model [trauma systems therapy (TST)] engages and retains traumatized children and their families in treatment. METHOD: Twenty youth who had prominent symptoms of posttraumatic stress were randomly assigned to receive TST or care as usual (CAU). RESULTS: At the 3-month assessment, 90% of TST participants were still in treatment, whereas only 10% of CAU participants remained. Within-group analyses of TST participants demonstrated significant reductions in posttraumatic stress and aggression as well as a slight improvement in home safety. CONCLUSIONS: These preliminary findings point to the need to utilize effective engagement approaches to retain traumatized children and their families in treatment.

A Grassroots Approach to Addressing the MCH Workforce Crisis.

Following predictions of a dramatic drop in the developmental-behavioral healthcare workforce by 2023 due to retirement and/or burnout, much has been written about ways to replenish or sustain needed personnel. To date, we continue to have a crisis of not enough new clinicians being attracted to the field to replenish the third of the workforce that is expected to retire. Recent concerns about increased clinician mental health problems and burnout in the wake of COVID-19 and other societal stressors add further complexity and urgency. This crisis will not be solved solely by a top-down focus on intensive graduate training or marketing to newly licensed professionals. Through the lived experience of three fellows from the Leadership Education in Neurodevelopmental and related Disabilities (LEND) program, this paper offers a "grassroots" approach to supporting people with disabilities (PWD) to weather this rebuilding period by increasing (a) their material wealth through entrepreneurship and (b) capacities for self-determination through thoughtful mentorship and considered changes in institutional culture.

Intellectual Disability Profiles, Quality of Life and Maladaptive Behavior in Deaf Adults: An Exploratory Study.

Individuals who are prelingually deaf and have intellectual disabilities experience great challenges in their language, cognitive and social development, leading to heterogeneous profiles of intellectual and adaptive functioning. The present study describes these profiles, paying particular attention to domain discrepancies, and explores their associations with quality of life and maladaptive behavior. Twenty-nine adults with prelingual deafness (31% female) and mild intellectual functioning deficits (mean IQ = 67.3, SD = 6.5) were administered the Vineland Adaptive Behavior Scales-II (VABS-II) and an adapted sign language version of a quality of life scale (EUROHIS-QOL 8). Intellectual disability domain discrepancies were characterized as at least one standard deviation difference between the social domain and IQ and the practical domain and IQ, and a significant difference, according to the VABS-II manual, between the social and practical domains. Domain discrepancies were found between intellectual functioning and both the practical (58.6%) and social domain (65.5%). A discrepancy between intellectual and social functioning was significantly associated with a higher level of internalizing maladaptive behavior (T = 1.89, p < 0.05). The heterogeneous profiles highlight the importance of comprehensive assessments for adequate service provision.