The Autism Impact Measure (AIM): Initial Development of a New Tool for Treatment Outcome Measurement

Kanne, Stephen M.; Mazurek, Micah O.; Sikora, Darryn M.; Bellando, Jayne; Branum‐Martin, Lee; Handen, Benjamin L.; Katz, Terry; Freedman, Brian; Powell, Mary Paige; Warren, Zachary

doi:10.1007/s10803-013-1862-3

Cited by 92 publications

(82 citation statements)

References 38 publications

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“…Sleep studies at 10 and 15 months post-Hi-Cy showed improvement in central apnea (0.6/hour and 0.8/hour, respectively) and hypopnea (9.4/ hour and 8.9/hour, respectively), with saturation nadir still at 86%. The markedly improved behavior and social interactions, as reported by parents and observed during assessment appointments by clinicians, were reflected by a modified AIM 16 score increase from 41 to 60.…”

Section: Figurementioning

confidence: 81%

“…At 18 months post-Hi-Cy, parents reported markedly diminished hyperphagia, resolution of aggressive food-seeking behavior, normalization of pain perception, and markedly improved empathy with appropriate emotional responses. Accordingly, her modified autism impact measure ([AIM] range, 18-90) 16 score improved from 49 to 85. BMI declined to 30 (Z-Score +2.9), and a sleep study demonstrated average oxygen saturation of 95%, nadir of 91%, and no episodes of end tidal carbon dioxide >50 mm Hg.…”

Section: Casementioning

confidence: 99%

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Improved Behavior and Neuropsychological Function in Children With ROHHAD After High-Dose Cyclophosphamide

et al. 2016

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Rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation (ROHHAD) is characterized by normal development followed by a sudden, rapid hyperphagic weight gain beginning during the preschool period, hypothalamic dysfunction, and central hypoventilation. [1][2][3] Without intervention, symptoms progress leading to substantial morbidity and mortality. [1][2][3] In addition, these patients display poorly characterized mood disorders, personality changes, and developmental regression, including loss of toilet-training, and behavior mimicking autism spectrum disorders. 1,2,[4][5][6] The etiology of ROHHAD is unknown and careful investigations have not revealed a genetic etiology. 2, 7-9 The association with neural crest tumors suggests an immune-mediated process resembling opsoclonus myoclonus ataxia syndrome. 2,5,7,10 Lymphocytic infiltration of the brain, 11, 12 presence of oligoclonal bands in the cerebrospinal fluid, 13 and response to immunomodulary therapy 5, 14 support an autoimmune process.High-dose cyclophosphamide (Hi-Cy) results in near total ablation of active lymphocytes without myeloablation, thereby "rebooting" the immune system, making it an efficacious and safe approach for selected patients with severe refractory autoimmune diseases. 5,15 We previously reported on a child with ROHHAD whose symptoms improved after Hi-Cy. 5 We now describe serial neuropsychological assessments of 2 consecutive, similarly treated abstract Rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation (ROHHAD) is a rare, generally progressive, and potentially fatal syndrome of unclear etiology. The syndrome is characterized by normal development followed by a sudden, rapid hyperphagic weight gain beginning during the preschool period, hypothalamic dysfunction, and central hypoventilation, and is often accompanied by personality changes and developmental regression, leading to substantial morbidity and mortality. We describe 2 children who had symptomatic and neuropsychological improvement after high-dose cyclophosphamide treatment. Our experience supports an autoimmune pathogenesis and provides the first neuropsychological profile of patients with rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation.

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Section: Figurementioning

confidence: 81%

Section: Casementioning

confidence: 99%

Improved Behavior and Neuropsychological Function in Children With ROHHAD After High-Dose Cyclophosphamide

et al. 2016

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“…The network maintains a registry of children with ASD diagnosed in any of the participating centers. The details of the AS-ATN registry methodology have been previously published and data from this registry have been used by other researchers in the past (Coury et al 2009; Kanne et al 2014; Kuhlthau et al 2010; Lajonchere et al 2012; Perrin et al. 2012; Sikora et al 2012).…”

Section: Methodsmentioning

confidence: 99%

Factors Associated with Self-Injurious Behaviors in Children with Autism Spectrum Disorder: Findings from Two Large National Samples

Soke

Rosenberg

Hamman

et al. 2016

J Autism Dev Disord

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In this study, we explored potential associations among self-injurious behaviors (SIB) and a diverse group of protective and risk factors in children with autism spectrum disorder from two databases: Autism and Developmental Disabilities Monitoring (ADDM) Network and the Autism Speaks-Autism Treatment Network (AS-ATN). The presence of SIB was determined from children’s records in ADDM and a parent questionnaire in AS-ATN. We used multiple imputation to account for missing data and a nonlinear mixed model with site as a random effect to test for associations. Despite differences between the two databases, similar associations were found; SIB were associated with developmental, behavioral, and somatic factors. Implications of these findings are discussed in relation to possible etiology, future longitudinal studies, and clinical practice.

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“…For example, in a previous study [19] children were not compliant with an oral motor assessment (Com DEALL Oro Motor Assessment [66]) possibly because of sensory sensitivities around the mouth. The last decade and a half of research on early intervention in autism has spurred the development of new measures sensitive to change from which the current trial benefits, such as the BOSCC [47] and the AIM [62]. Furthermore, we use a wide range of assessments to comprehensively ascertain the impact of the Point OutWords intervention, including measures of restricted and repetitive behaviour (BOSCC, SRS, AIM); some studies have found that improvement in communication skills can have a knock-on effect on the reduction of restricted/repetitive behaviours [9,67].…”

Section: Discussionmentioning

confidence: 99%

“…The AIM [62] is a 25-item parent-report questionnaire that measures changes in core autism symptoms, and which has strong test-retest and cross-informant reliability [62]. Mean differences in scores collected at baseline and post-intervention will be compared between the intervention and control groups.…”

Section: Autism Impact Measure (Aim)mentioning

confidence: 99%

Point OutWords: protocol for a feasibility randomised controlled trial of a motor skills intervention to promote communicative development in non-verbal children with autism

McKinney

Hotson

Rybicki

et al. 2020

Trials

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Background: Point OutWords is a caregiver-delivered, iPad-assisted intervention for non-verbal or minimally verbal children with autism. It aims to develop prerequisite skills for communication such as manual and oral motor skills, sequencing, and symbolic representation. This feasibility trial aims to determine the viability of evaluating the clinical efficacy of Point OutWords. Methodology: We aim to recruit 46 non-verbal or minimally verbal children with autism and their families, approximately 23 per arm. Children in the intervention group will use Point OutWords for half an hour, five times a week, for 8 weeks. Children in the control group will have equal caregiver-led contact time with the iPad using a selection of control apps (e.g. sensory apps, drawing apps). Communication, motor, and daily living skills are assessed at baseline and post-intervention. Parents will keep diaries during the intervention period and will take part in focus groups when the intervention is completed. Discussion: Point OutWords was developed in collaboration with children with autism and their caregivers, to provide an intervention for a subgroup of autism that has been historically underserved. As autism is a heterogeneous condition, it is unlikely that one style of intervention will address all aspects of its symptomatology; the motor skills approach of Point OutWords can complement other therapies that address core autistic symptoms of social cognition and communication more directly. The current feasibility trial can inform the selection of outcome measures and design for future full-scale randomised controlled trials of Point OutWords and of other early interventions in autism. Trial registration: ISRCTN, ISRCTN12808402. Prospectively registered on 12 March 2019.

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The Autism Impact Measure (AIM): Initial Development of a New Tool for Treatment Outcome Measurement

Cited by 92 publications

References 38 publications

Improved Behavior and Neuropsychological Function in Children With ROHHAD After High-Dose Cyclophosphamide

Improved Behavior and Neuropsychological Function in Children With ROHHAD After High-Dose Cyclophosphamide

Factors Associated with Self-Injurious Behaviors in Children with Autism Spectrum Disorder: Findings from Two Large National Samples

Point OutWords: protocol for a feasibility randomised controlled trial of a motor skills intervention to promote communicative development in non-verbal children with autism

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