Development and Evaluation of an Educational Initiative to Improve Hospital Personnel Preparedness to Care for Children with Autism Spectrum Disorder.

OBJECTIVE: To evaluate the effectiveness of a multimodal educational curriculum on increasing hospital personnel's awareness of successful strategies and comfort in caring for children with autism spectrum disorder (ASD). METHODS: We developed a 3-part training for front-line staff (i.e., front desk, clinical assistants, and phlebotomists) in 8 outpatient hospital departments frequented by patients with ASD. Following a needs assessment, participants completed an online educational module and then attended an in-person seminar tailored to each department. To evaluate training effectiveness, we administered pre-, immediate post-, and 1 month post-training surveys assessing personnel attitudes, comfort, perceived knowledge, and behaviors around caring for patients with ASD. RESULTS: We trained 168 staff members from 8 departments. On the needs assessment, participants (N = 129) reported a mean 2.5 behavioral incidents involving patients with ASD over the previous 3 months; 92% believed that the training would be helpful for their work. Across pre-, immediate- and 1-month post-training surveys, scores improved on all questions related to personnel attitudes about the importance of ASD-friendly care, comfort interacting with patients with ASD, perceived knowledge about ASD, and self-reported frequency of behaviors intended to help children with ASD adjust to the hospital setting (p < 0.05). There was no difference in baseline scores or change in scores between clinical and nonclinical personnel. On a program evaluation (N = 57), 81% rated the training as "very good" or "excellent," and 87% reported that they would be able to apply training material immediately to their role. CONCLUSION: This training initiative led to improvement in attitudes, comfort level, perceived knowledge, and self-reported behaviors of hospital personnel working with patients with ASD, which was maintained over 1 month.

International/Institutional Trauma in Developmental Pediatric Practice.

CASE: "Aabis" is a school-aged boy from a predominantly conservative Muslim nation who presented to a tertiary developmental-behavioral pediatric (DBP) clinic to seek "expert opinion" for significant social and learning difficulties in the context of a history of frequent falling and "clumsiness." He was seen by a psychiatrist in his home country, who ordered an electroencephalogram and "brain map" (both normal), and received occupational and physical therapies. Frequent tantrums and intense emotional reactions to minor events-revealed to be related to a history of repeated physical beatings from groups of his "friends"-prompted referral to the DBP clinic. When asked why he did not fight back, Aabis said that he did not want to lose his friends. He and his parents further explained that this kind of organized aggression is considered part of normative development in their country and that Aabis needed to "toughen up."Aabis was described by his parents as being very "sensitive" when others raised their voices, shivering when reprimanded and profusely apologizing for real and imagined mistakes. He bit his nails until they bled, washed his hands repetitively, and changed his clothes several times per day. On witnessing his parents arguing, Aabis threatened to harm himself with a decorative knife.The assessment presented with several procedural complications specifically the use of an interpreter and the cultural differences regarding many of the topics discussed. Aabis spoke very little English, and an interpreter was not available in person on the initial day of the assessment. Telephonic phone translation services were attempted, but there were concerns that Aabis would not feel comfortable with sharing his emotions over the phone with an unidentified individual. As feared, Aabis was resistant to discuss emotionally charged topics (e.g., feeling sad, being bullied, hearing or seeing things) and grew impatient and irritated with the phone interpreter. After some unsuccessful experimentation with a Google-based translation system (implemented at Aabi's request to help build comfort and rapport), a second telephonic interpreter was brought into the session, who Aabis later described to his parents as "mean." (Aabis clarified that the second interpreter had been brusque and insensitive to his tentative attempts to express his feelings, e.g., by telling him to "Speak up. Spit it out.")Toward the end of the interview, Aabis seemed to dissociate and insisted anxiously that he did not want to relay certain information without his parents present in the room. What would you do next in this situation?Details about this case, including name and age, have been altered to protect the child's identity.

Autism Spectrum Disorder and Avoidant/Restrictive Food Intake Disorder.

CASE: Kendra is a 4-year-old girl with autism spectrum disorder (ASD) who presents for follow-up of feeding problems to her pediatric clinician. She is an only child in a family where both parents are scientists. Feeding concerns date to infancy, when she was diagnosed with Gastroesophageal Reflux Disease (GERD) associated with persistent bottle refusal and the acceptance of few pureed foods. At 13 months, milk and peanut allergies were diagnosed. Following a feeding clinic evaluation at 24 months, she was prescribed a soy milk supplement and an H2 blocker. There was no concern for oral-motor dysfunction. She was also referred to early intervention for feeding therapy. However, her parents terminated participation after 6 months because she became anxious and had tantrum prior to treatment groups.She was seen in another feeding program at 3 years; zinc, folate, thyroid, and a celiac panel were normal, and an endoscopy was negative for eosinophilic esophagitis. She began individual feeding therapy, where concerns for rigidity, difficulty transitioning, and limited peer interactions led to a neuropsychological evaluation. Kendra was diagnosed with an ASD and avoidant/restrictive food intake disorder (ARFID). Her cognitive skills were average, and expressive and receptive language skills were low average.Her diet consisted of French fries, Ritz crackers, pretzels, and 32 ounces of soy formula daily. She had stopped accepting Cheerios and saltines 2 months prior. She controlled other aspects of feeding, insisting on a specific parking spot at a fast food restaurant and drinking from a particular sippy cup. Her parents accepted these demands with concern about her caloric intake, which they tracked daily.Following diagnosis with ARFID, she resumed feeding therapy using a systematic desensitization approach with rewards. At the first session, she kissed and licked 2 new foods without gagging. Her mother appeared receptive to recommendations that included continuing the "food game" at home, replacing 1 ounce of soy formula by offering water each day, limiting between-meal grazing, and refusing specific feeding demands.Currently, her parents plan to discontinue feeding therapy with concerns that the treatment was "too harsh." Her father produces logs of her caloric and micronutrient intake as evidence that she did not replace missed formula with other foods and reports that she subsequently became more difficult to manage behaviorally. Her father now demands to see randomized controlled trials of feeding therapy approaches. Her weight is stable, but she has now limited her pretzel intake to a specific brand. How would you approach her continued care?

Electronic Health Record Based Algorithm to Identify Patients with Autism Spectrum Disorder.

OBJECTIVE: Cohort selection is challenging for large-scale electronic health record (EHR) analyses, as International Classification of Diseases 9th edition (ICD-9) diagnostic codes are notoriously unreliable disease predictors. Our objective was to develop, evaluate, and validate an automated algorithm for determining an Autism Spectrum Disorder (ASD) patient cohort from EHR. We demonstrate its utility via the largest investigation to date of the co-occurrence patterns of medical comorbidities in ASD. METHODS: We extracted ICD-9 codes and concepts derived from the clinical notes. A gold standard patient set was labeled by clinicians at Boston Children's Hospital (BCH) (N = 150) and Cincinnati Children's Hospital and Medical Center (CCHMC) (N = 152). Two algorithms were created: (1) rule-based implementing the ASD criteria from Diagnostic and Statistical Manual of Mental Diseases 4th edition, (2) predictive classifier. The positive predictive values (PPV) achieved by these algorithms were compared to an ICD-9 code baseline. We clustered the patients based on grouped ICD-9 codes and evaluated subgroups. RESULTS: The rule-based algorithm produced the best PPV: (a) BCH: 0.885 vs. 0.273 (baseline); (b) CCHMC: 0.840 vs. 0.645 (baseline); (c) combined: 0.864 vs. 0.460 (baseline). A validation at Children's Hospital of Philadelphia yielded 0.848 (PPV). Clustering analyses of comorbidities on the three-site large cohort (N = 20,658 ASD patients) identified psychiatric, developmental, and seizure disorder clusters. CONCLUSIONS: In a large cross-institutional cohort, co-occurrence patterns of comorbidities in ASDs provide further hypothetical evidence for distinct courses in ASD. The proposed automated algorithms for cohort selection open avenues for other large-scale EHR studies and individualized treatment of ASD.

Autism associated with early institutionalization, high intelligence, and naturalistic behavior therapy in a 7-year-old boy.

CASE: Paul is a 7-year-old boy with a history of cerebral palsy and left-side weakness secondary to perinatal injury. He was adopted to the United States at 19 months from a baby home in Eastern Europe, where the caregiver to child ratio was 7:1. Paul spent most of his early developmental period in a crib. On adoption, he was nonverbal and nonambulatory, but these skills developed within 1 year. Paul was noted at 4 years of age to be struggling socially and also to exhibit restricted interests (e.g., memorizing maps and world leaders). He was referred for neuropsychological testing at age 5 and was found to have cognitive skills in the gifted range (verbal intelligence quotient, IQ =143; 99.8%) but exhibited markedly reduced social reciprocity with high levels of restricted interests and repetitive behaviors, leading to a diagnosis of autism spectrum disorder (ASD) in the context of early institutionalization. Given his cooperative and attentive presentation, high IQ, and ability to imitate, Floortime, a more naturalistic behavioral therapy for ASD, was recommended rather than traditional applied behavior analysis, which is more commonly available in the region. In addition, Paul was provided with group speech and language therapy with a social/pragmatic focus. After 1 year, Paul's socialization improved but he struggled to initiate interactions and maintain friendships. He focused instead on his restricted interests and played alone. After 2 years of intervention, Paul presents as highly sociable with well-sustained eye gaze, interactive play, and successful friendships. Still, without direction and structure, Paul will happily draw maps for hours at a time. He is hyperlexic and working far above grade level across subjects. His mother now questions--is this still truly institutional autism or is he simply too intelligent to relate to same-age peers?