Medical Care - Autism Research Institute https://autism.org/category/medical-care/ Advancing Autism Research and Education Mon, 22 Jan 2024 19:35:26 +0000 en-US hourly 1 https://wordpress.org/?v=6.5.3 Screen Time and Social Engagement in Early Childhood Development https://autism.org/screens-social-engagement/ Tue, 12 Sep 2023 22:55:20 +0000 https://last-drum.flywheelsites.com/?p=15982 Karen Heffler, MD, takes viewers on a comprehensive exploration of the relationship between early-life screen time exposure and autism risk. She delves into the intricate interplay of genetics, environmental factors, and development outcomes. The presentation highlights critical findings about screen time, social engagement, and autism symptoms. Heffler considers the potential

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Karen Heffler, MD, takes viewers on a comprehensive exploration of the relationship between early-life screen time exposure and autism risk. She delves into the intricate interplay of genetics, environmental factors, and development outcomes. The presentation highlights critical findings about screen time, social engagement, and autism symptoms. Heffler considers the potential consequences of screen media on young children’s development and discusses promising new intervention studies.

Printable handouts of the slides (pdf) are online HERE

A list of references from the talk (pdf) are online HERE

In this webinar: 

0:00 – Presenter introduction
3:40 – Background and positive developmental predictors
7:30 – Screen time and social experiences
9:20 – Video and television learning (Video deficit)
11:55 – Developmental outcome associated with early TV/Screen media viewing
13:25 – Brain differences in autism
16:48 – Brain plasticity, social development, and screen time
18:34 – Autism risk factors
21:35 – Study 1 – Association of early-life social and digital media experiences with the development of ASD-like symptoms
26:50 – Study strengths and limitations
28:20 – Literature review on early-life screen time and autism association studies
29:56 – Study 2 – Screen media and social intervention in autism: a 6-month pilot study
36:30 – Study strengths and limitations
37:54 – Literature review on intervention studies
39:12 – Case reports of interest
41:46 – Drivers and mechanisms of association of early-life screen time with autism
43:53 – Summary and next steps
45:45 – Q & A

Background

Autism risk is affected by both genetics and modifiable environmental factors such as verbal stimulation, parental responsiveness, and parental involvement in play (3:42). These factors have been linked to positive developmental and social outcomes, emphasizing the importance of early nurturing experiences (5:25). Conversely, Heffler explains, screen media is related to diminished parental responsiveness, hindered language development, and less toy play, all of which may contribute to adverse developmental outcomes (7:30)

As defined in this presentation, screen time encompasses TV, video, gaming, mobile apps with viewing on tablets or smartphones, and some electronic toys. The presenter highlights that video chatting with family and friends is social and considered differently (20:55). Research indicates that children do not learn well from screens as pre-recorded videos are not socially responsive to the child’s actions. Some developmental outcomes associated with early TV/screen media viewing include language delay, attention problems, executive function difficulties, and disorganization in the white matter of the brain (11:55). Joint attention, or when a child looks back and forth between an adult’s eyes and an object of interest, does predict learning (9:20)

Brain development and plasticity

The presenter discusses differences in autistic brains and underscores the high correlation between superior auditory and visual processing abilities and autism. She notes, however, that this does not necessarily convey good overall brain function (13:20). Some abilities have been linked to autism symptom severity, and other developmental differences predict whole brain overgrowth and/or autism development (15:16). 

Brain plasticity is how the brain responds to one’s experiences, and brain connections are formed based on those experiences and responses. Social factors like eyes, voices, and smiles naturally react to young children and promote the development of social brain pathways. Contrastingly, non-social factors, like screens and electronics, likely promote highly sensory-oriented brain connectivity due to their lack of natural social features (16:48).  

Risk factors and recommendations

Heffler outlines a study that found early-life social experiences and early-life screen time are two important risk factors for autism. The study found that infants with autism traits who were exposed to both screen time and social training from their parents are less likely to develop autism (18:34). She explains that high-screen viewing is concerning in early life because electronic media distracts the child from people and distracts the parents/caregivers from the child, both of which may directly affect brain connectivity and attention mechanisms in autism. Heffler and her colleagues recommend no screen viewing before 18-24 months of age and no more than one hour of screen time per day through age five (20:20).

Drexel Studies

Study 1: Association of early-life social and digital media experiences with the development of ASD-like symptoms 

Using parental report data from the National Children’s Study, researchers investigated the association between TV/DVD exposure and social experiences on autism symptoms. Findings suggested that higher screen time (4 or more hours per day) correlated with an increased risk of autism symptoms at 12 months and two years of age and that autistic children reported more screen time (21:35). Researchers also found that when parents play with the child less than daily at 12 months, there was an 8.9% increase in autism symptoms. Screen exposure at 12 months was also associated with a 4.2% increase (24:15).

Study 2: A literature review on early-life screentime and autism association studies

Heffler defines the parameters of the literature review and discusses critical findings: Greater daily screentime was associated with autism diagnosis (9 studies), autism symptoms (7 studies), and symptom severity (4 studies). Similarly, earlier first screen-viewing was associated with autism diagnosis and symptoms, and less parent-child interaction was also associated with autism risk and severity (28:20)

Study 3 – Screen media and social intervention in autism: a 6-month pilot study

In collaboration with Lori Frome, Dr. Heffler developed a parent training program to reduce screen time and enhance social engagement, particularly for young children with autism and high media exposure (29:56). The program was implemented over six months and included instruction on digital media and child development, parent-child interactions, and poor screen learning. Parents received weekly, 1-hour, in-home support and were encouraged to involve children in family routines like laundry and cleaning to support social and learning development (32:05)

Results showed a significant reduction in screen time, from 5.6 hours per day to five minutes a day, over six months. There was also a 23% reduction in core autism symptoms and a 19% increase in adaptive behavior function (did not quite reach significance) (34:20). Parental stress declined by 37% (large effect size), and positive feedback indicated awareness and improvements in social and developmental outcomes. Heffler notes that changes in child behavior began almost immediately, which made it easier for parents to cut screen time and interact with their children (36:00)

Study 4: A literature review on intervention studies

This review considered six studies, five of which included parent training on social engagement and screen time reduction; these five studies pointed to a correlation between reducing screen time to less than one hour per day and a statistically significant decrease in autism symptoms. Similarly, more than one hour of screen time per day negatively affected therapeutic outcomes. Overall, improvement correlated with screen time reduction, parent stress was significantly improved, and in one study, EEG patterns also improved (37:54). 

The speaker discusses the strengths and limitations of each study.

Case reports and summary

The speaker outlines three case reports that further demonstrate the positive impact of minimizing screentime during early development, including one where autism symptoms entirely resolved in 4 months after eliminating screens (39:12). Heffler reiterates the potential impact of reduced screentime on autism symptom development and lists driving factors and mechanisms of this association (41:46). The speaker highlights the difference between association and causation, noting that all studies presented show associations

She summarizes the presentation by reiterating the main findings and suggestions:

  • More screen time in the first year of life is associated with the development of autism and autism symptoms. 
  • Early-life parent-child social engagement is associated with a decreased risk of autism development.
  • Interventions, including screen time reduction and parental support for social engagement, are associated with a rapid decrease in autism symptoms in children with high screen viewing.

Researchers assert the need for randomized controlled trials, measures of gene-environment interactions, and community-based parent education studies in the future (44:58). Heffler also urges viewers to help raise awareness of these findings among parents of young children and across healthcare providers, government agencies, and everyone in between. She provides thanks before the Q&A (45:45)

The speaker:

Karen F. Heffler, MD is a researcher in the Department of Psychiatry, Drexel University College of Medicine, with primary interest in modifiable risk factors and early childhood development. She completed her medical school and residency training at the University of Pennsylvania, and she began her career as an ophthalmologist. Over a decade ago, she changed focus and began to participate in research involving early childhood development and autism. The rising rates of autism and her own son’s diagnosis of autism spectrum disorder impacted this decision.

Her review of the literature on autism, parent-child interactions, effects of digital media on social interaction, early post-natal brain development, neuroplasticity, and brain development in autism informs her research.  Along with colleagues at Drexel, she researches experiential factors including early digital media use, social experiences, and developmental outcomes. Her group published the first prospective study to show the association between early-life digital media exposure and subsequent autism-like symptoms.

Dr. Heffler and her colleague Lori Frome M.Ed. developed a parent training program on digital media, social interaction, and child development, studying the potential benefit of screen reduction with focus on social engagement in young children with autism and high media exposure. Dr. Heffler speaks at national and international child development and research conferences, and regularly provides talks to pediatricians, psychiatrists, and early-intervention provider groups. Dr. Heffler and her research colleagues have significantly contributed to the early childhood development and autism literature with many publications.

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The Complexities of Establishing Evidence-Based Interventions for Autism https://autism.org/complexities-evidence-based-treatment/ Tue, 21 Feb 2023 17:43:20 +0000 https://last-drum.flywheelsites.com/?p=15591 Giacomo Vivanti, Ph.D., dives into the complexities of establishing evidence-based autism interventions. He describes the ever-changing state of intervention literature, noting that autistic individuals still experience health inequalities. The speaker discusses four aspects of the interplay between research and practice and details studies demonstrating each assertion. Vivanti calls for universal outcome metrics based

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Giacomo Vivanti, Ph.D., dives into the complexities of establishing evidence-based autism interventions. He describes the ever-changing state of intervention literature, noting that autistic individuals still experience health inequalities. The speaker discusses four aspects of the interplay between research and practice and details studies demonstrating each assertion. Vivanti calls for universal outcome metrics based on well-being and considers how behavioral therapies can impact core autism symptoms (i.e., communication). The presenter asserts the usefulness of public health frameworks in assessing disparities between research and practice. He summarizes the presentation before the Q&A.

Take the knowledge quiz for this webinar HERE

In this webinar: 

1:15 – Individual evidence-based care
2:50 – Landscape of autism early interventions
4:55 – Health inequities for autistic individuals
6:45 – Study: Early onset dementia in autism
9:00 – Interplay of science and information dissemination
11:40 – Issue 1: The gap between research and practice
13:30 – Study: Treatment fidelity impact on skill acquisition
16:23 – Community implementation
19:00 – Community-partnered participatory research (CPPR)|
20:02 – Issue 2: Disagreements on what counts as evidence
24:15 – Study: Behavior analysts’ knowledge on naturalistic strategies
27:10 – Issue 3: Disagreements on conceptual categories
28:15 – Study: Meta-analysis of ABA treatments
29:55 – U.S. state insurance coverage
32:47 – Issue 4: Disagreement on intervention goals
37:05 – Complexity of well-being and autism symptoms
40:00 – Study: Consensus on target mechanisms
42:53 – Study: Inclusive vs autism-specific classroom learning opportunities
46:05 – Conclusions
48:20 – Q&A

Introduction

More research on autism early interventions has been published in the last three years than over the previous four decades combined (2:50). Vivanti explains that while the quality of early interventions has increased substantially, our knowledge is still rapidly evolving (4:05). Despite this, autistic individuals continue to experience health inequalities that lead to preventable adverse outcomes associated with mental and physical health, self-realization and self-determination, community participation, and educational opportunities (4:55). The presenter cites a study that found the chance of early onset dementia (Alzheimer’s) in autistic individuals is double that of the non-autistic population. He posits that this is due to the continued lack of cognitive, social, and educational support for autistic adults (6:45). Vivanti specifies four complexities of establishing evidence-based interventions:

# 1 – The gap between research and practice

The speaker recalls that his mother was blamed for his brother’s autism diagnosis in the 1990s, even though “cold parenting” had been disproven in the 1960s (9:00). Therefore, he continues, the first main issue in establishing evidence-based interventions is the gap between research and practice (11:40). The speaker explains how intervention procedures in community settings are often different from the procedures used in clinical trials (11:40). Vivanti details a study that assessed the association between outcomes of the Early Start Denver Model (ESDM) and intervention fidelity (adherence) to clinical implementation. Researchers found a lot of implementation variation not only across practitioners but also across patients of each practitioner (13:30). Children with the best outcomes were treated by therapists implementing interventions at higher fidelity (15:35). The presenter considers feasibility and philosophical commitments as reasons for such variations in community implementation (16:23). He underscores that procedures should be flexible to the individuals but rigorous as well. The speaker highlights community-partnered participatory research (CPPR) (19:00)

# 2 – Disagreements about what counts as evidence

Vivanit explains that practitioners rely on information from different agencies and reviews that analyze the literature. However, each agency/review adheres to its own guidelines and criteria for what qualifies as evidenced-based (e.g., randomized trial vs. single subject design) (20:02). Different agencies therefore come to different conclusions about evidence-based interventions. Such confusion around facts makes clinicians and caregivers hesitant to adopt new interventions, despite documented effectiveness (23:05). The speaker outlines a survey study of 901 board-certified behavior analysts’ knowledge of naturalistic developmental behavioral interventions (NDBI). Although significant evidence supports NDBI efficacy, few participants believed these practices were effective or appropriate (24:15)

# 3 – Disagreements on conceptual categories

Review agencies generally classify interventions according to conceptual categories like ABA, NDBI, CBT, etc. Vivanti explains that, again, arbitrary criteria for each category result in different recommendations for the evidence-based status of interventions across agencies (27:10). He outlines a meta-analysis of ABA-based interventions that found ABA therapies in various categories in several meta-analyses and reviews (28:15). Most states in the U.S., he continues, have an insurance coverage mandate for autism that specifically mentions ABA. Although providers are often willing to incorporate new evidence-based practices like the ESDM, insurance companies frequently refuse treatments if they are not identified as ABA (29:55). Therefore, many natural-based models are not provided, thus highlighting the extremely practical consequences of conceptual disagreements (31:50)

# 4 – Disagreements on intervention goals

Vivanti asserts that “any consensus of what to do must be based on a consensus of why we are doing it.” He remembers thinking that the goals for his brother’s interventions ought to be based on safety and support in daily environments and activities (32:47). However, intervention goals are highly debated, which leads patients/users to assume interventions prioritize conformity and compliance at the expense of neurodiversity and individualized care. The speaker asserts that this lack of a universal metric for “successful outcomes” keeps service providers from being able to specifically communicate what they want to achieve (34:00). He underscores using language and concepts based on freedom from distress, community participation, and well-being across the lifetime (37:05). Vivanti and his colleagues tried to generate a consensus on legitimate aspects of effective interventions that are respectful to the diversity and uniqueness of children but also rigorously empower individuals. Researchers found that interventions informed by this model emphasize agency, learning through positive interactions, engagement in novel and familiar schemas, and an interplay of comfort and challenge (40:00). Another study found that autistic children with more social attention had better outcomes in inclusive classrooms compared to autism-specific classrooms (42:53). Such findings underscore the importance of rigorous individualized interventions.

Conclusion

The speaker emphasizes that knowledge of evidence-based interventions is advancing at an unprecedented pace. However, autistic people still experience healthcare differences. This is due to the complex interplay of research and practice. Key factors include disagreements about what counts as evidence, behavioral interventions, and intervention goals. These and other factors impacting implementation and adoption must be scientifically addressed and researched. Vivanti highlights that a public health framework can help examine these factors and contextualize challenges and opportunities associated with autism in the broader context of research and practice (46:05). The speaker provides thanks and resources before the Q&A, where he discusses recommended interventions, various treatment concepts, how behavioral education programs impact autism neural structure, and much more (48:20).

The speaker:

Dr. Giacomo Vivanti is an Associate Professor in the Early Detection and Intervention research program at the A.J. Drexel Autism Institute. His career as a scientist is driven by a key commitment to understand and address the social learning difficulties observed in young children with autism. This focus reflects his life experience of growing up with two brothers diagnosed with autism, as well as his diverse clinical and research training. Dr. Vivanti’s research involves eye-tracking and behavioral paradigms to investigate early learning processes in young children with autism, as well as clinical trials and community-based participatory research to evaluate, optimize and customize early interventions for children with autism. His research has been funded through a diverse portfolio of federal and foundation grants.

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The Complexities of Establishing Evidence-Based Interventions for Autism

February 21st, 2023|Assessment, Autism Spectrum Disorders, Early Intervention, Educational Therapies, Medical Care, Research, Webinar|

Giacomo Vivanti, Ph.D., dives into the complexities of establishing evidence-based autism interventions. He describes the ever-changing state of intervention literature, noting that autistic individuals still experience health inequalities. The speaker discusses four aspects

The post The Complexities of Establishing Evidence-Based Interventions for Autism appeared first on Autism Research Institute.

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Transitions from Pediatric to Adult Medical Care https://autism.org/transition-medical-care-adulthood/ Tue, 04 Oct 2022 21:49:58 +0000 https://last-drum.flywheelsites.com/?p=14602 Julie Corder, CNP, and Carrie Cuomo, DNP, CPNP, with the Cleveland Clinic Learning Hospital, discuss the critical stages of transition from pediatric to adult healthcare for individuals with complex medical needs. They define health care transitions (HCT), outline core elements for a successful HCT, and provide various resources. The presenters consider potential

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Julie Corder, CNP, and Carrie Cuomo, DNP, CPNP, with the Cleveland Clinic Learning Hospital, discuss the critical stages of transition from pediatric to adult healthcare for individuals with complex medical needs. They define health care transitions (HCT), outline core elements for a successful HCT, and provide various resources. The presenters consider potential timelines and goals for different stages of HCT and discuss what turning 18 means in the US. Cuomo and Corder underscore the role that telehealth can play in HCT and share a video resource with explanations and social stories. Throughout the presentation, the speakers emphasize that it is never too late or too early to begin preparing for HCT and that transition plans are individual and different. They close with a question and answer session where they discuss insurance, COVID anxiety, social workers, and more.

Handouts are online HERE
Take the knowledge quiz for this webinar HERE

In this webinar: 

00:56 – Learning objectives
2:19 – Statistics
4:30 – Transitions as a process
8:03 – Transition vs transfer
10:13 – Got Transition resource
11:50 – Switching physicians
13:10 – Six core elements of transition
15:44 – Transition readiness questionnaire and example
17:20 – HCT Timeline and goals, 12 – 14
20:40 – HCT Timeline and goals, 14 – 16
24:27 – HCT Timeline and goals, 16 – 17
27:20 – Turning 18
29:08 – HCT Goals, 18+
30:25 – Identifying caregivers
30:38 – Example: Transition of care plan
31:27 – Example: Documents transfer
32:33 – Transition resources
36:32 – Finding an adult provider
38:23 – CARES Telehealth meet and greets
39:10 – Video: Tele-transitions and social stories
42:07 – Questions for your new care providers
44:55 – Create your goal
46:12 – Quote
47:06 – Q & A

Carrie Cuomo outlines the presentation objectives (00:56) and notes that individuals with autism do not receive health care transition services (HCTS) at the same rate as their non-autistic peers (2:09). She provides statistics on co-occurring conditions and the number of autistic youth that turn 18 every year (3:08). Cuomo defines a health care transition (HCT) as 

“… the process of moving from a child/family-centered model of health care to an adult/parent-centered model of health care, with or without transferring to a new clinician. It involves planning, transfer, and integration into adult-centered health care model (4:30).”

The speaker underscores that transitions are personal and take many years (6:17) and that it is essential to celebrate the small victories (9:20). Cuomo suggests Got Transition as a resource with various tools that can be individualized and reproduced for youth, parents, providers, and educators (10:13). She highlights that there is no wrong way to make an HCT and notes that adult providers often include management of conditions that specialists manage for children (11:00). The presenter lists the six core elements of transition as practiced in their profession: 

  1. Receive a transition policy
  2. Transition tracking and monitoring
  3. Transition readiness assessment to detect knowledge gaps and strengths
  4. Transition planning
  5. Transfer of care (where you actually change providers) 
  6. Transfer completion and feedback

Julie Corder (17:05) provides suggestions for HCT timelines and goals for individuals of different ages. She notes that the ages are simply a range and that it is never too early or too late to begin planning for HCT. The timelines and goals are summarized below.

Timeline (17:20) and HCT Goals (19:07): 12 – 14 years 

It is crucial to ask providers how long they will take care of someone and if they are prepared to assist in HCT for your teen. Caregivers can help youth learn about their own health conditions, medications, and allergies and endorse time alone with the teen and provider for part of each visit. Assistive technology (AT) devices are often used to support independence for individuals with communication difficulties and can encourage teens to ask their doctor questions about their own health. Youths should aim to communicate directly with their providers for a portion of the visit and prepare for appointments by writing down questions beforehand. 

Timeline (20:40) and HCT Goals (22:40): 14 – 16 years

Parents/guardians and teens can complete a readiness assessment and discuss it with their practitioner. Caregivers can also help youth learn more about their health, emergency management, how to order and refill prescriptions, and how to make appointments. Corder suggests encouraging teens to see their provider alone for part of each visit. Teens can aim for an ability to summarize their health history in three sentences or less to share with providers and to know medications, dosage, allergies, and routines independently. At this point, Corder suggests that teens and caregivers actively discuss HCT with each other and their providers.

Timeline (24:27) and HCT Goals (26:34): 16 – 17 years 

Youth should carry contact information for medical providers and insurance in their wallet or phone. They can learn to use patient portals and should explore shared decision-making via agencies and lawyers to determine the correct level of oversight after 18. It is best to begin searching for adult care providers and subspecialty providers at this point as well. Teens can aim to talk to the doctor independently and may want to see their provider on their own during an appointment. At this point, teens should know when and how to get emergency care and find their doctor’s phone number and contact. 

HCT Goals (29:08): 18 years

Corder suggests that once legally an adult, individuals should know how to obtain medical information from a health portal, make and cancel appointments, get to the doctor’s office, receive a referral, and generally manage their own health care and well-being. If individuals cannot do these things on their own, Corder continues, they will need to identify someone else who can assist them and has the authority to do so (30:25)

The speaker outlines what turning 18 means in the US concerning adulthood, healthcare decisions, and confidentiality. She underscores that after 18, “… your health and medical information are private (confidential) and cannot be shared unless you give the OK.” Corder provides multiple transition plan resources, examples (32:22), and tips for finding an adult provider (36:32). She discusses the positive impacts that telehealth can have on family care and HCTS and highlights the increasing use of tele-transition services (38:23). The presenters share a video clip that explains tele-transition meet and greets and supplies virtual appointment practice videos and social stories (40:10). Corder reminds viewers that healthcare transitions are challenging, emotional, and different for every person (45:01) before opening the question and answer session (47:06).

The transition from pediatric to adult healthcare is a critical stage for all individuals, and particularly so for patients with complex medical needs. Learn about the factors to consider when navigating this challenging life period.

Handouts are online HERE

The speakers:

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Back-to-School Resources

August 22nd, 2022|News|

Whether you’re a parent preparing a child for grade school or an adult transitioning into or out of college, the back-to-school season can present unique challenges for families and individuals with autism.

LGBTQIA+ and Autism

June 13th, 2022|News, Parenting|

Contemporary research on the intersection of autism, sexuality, and gender identity asserts that autistic individuals are more likely to identify as LGBTQIA+ than the neurotypical population. Similarly, the prevalence of autism is

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