Autism Treatment Network and

Autism Intervention Research Network on Physical Health: Annual Report

ATN/AIR-P Network Annual Report The Autism Treatment Network (ATN) and the Autism Intervention Research Network on Physical Health (AIR-P) form an integrated network comprised of 14 leading children’s hospitals and academic institutions across North America. Working together, the Network combines the highest standards of clinical care with the latest findings and best practices in research to advance medical care for children and adolescents with autism. The vision of the Network is to improve the health and quality of life of individuals with autism spectrum disorder (ASD). This report highlights the work being carried out in support of the Network’s mission to create a sustainable system for care delivery, research, and evidence development in ASD. The Network supports family-centered, multidisciplinary team-based care; develops best practices and standardized models of care; publishes expert practice guidelines to overcome barriers to care for children with autism; shares evidence-based best practices for autism screening, diagnostics, and treatments; maintains an open-access behavioral and medical research registry; advances scientific research through studies on major autism-related health concerns; creates and disseminates tool kits to better manage autism-related issues; and provides education and training focused on underserved populations to health professionals and families.

Autism Treatment Network

The ATN specializes in developing a model of interdisciplinary team-based care for children with autism. The Network includes hospitals, physicians, researchers, and clinical leaders who share a common commitment to improve autism healthcare outcomes through high-quality, data-driven, evidence-based medical care. The ATN is currently a rich platform for initiatives improving health care for families with ASD. The Network supports community clinicians through information-sharing tools and dissemination of best practices. Additionally the ATN is a research platform which works to advance the application of new knowledge to clinical practice. The chart below gives examples of how the ATN can support other initiatives.

Value of the ATN

Autism Intervention Research Network on Physical Health

The Autism Intervention Research Network on Physical Health (AIR-P) builds on the strengths of the ATN by conducting research on evidence-based interventions to improve the physical health and well-being of children and adolescents with ASD and other developmental disabilities, develop evidence-based guidelines, and disseminate guidelines and critical information on Network research findings. The AIR-P is funded by HRSA Collaborative Agreement UA3 MC 11054 to the Massachusetts General Hospital. The AIR-P advances HRSA’s goal of addressing disparities and improving health equity by focusing on individuals from underserved populations across the U.S.

AIR-P Current Objectives:

1. Conduct multisite research on evidence-based interventions that improve physical health of children and adolescents with ASD and developmental disorders, especially underserved populations;

2. Transform the Network into a multisite Learning Network (LN); to use data for research, quality improvement, and more rapid translate findings to clinical practice

3. Support development and mentorship of emerging or new researchers; 4. Develop and disseminate guidelines for medical interventions; 5. Accelerate the adoption of effective interventions into practice settings and communities,

especially underserved communities; and 6. Leverage Network capacity to compete for grant opportunities from other Federal and private

sources.

By linking the research focus of the AIR-P with the clinical focus of the ATN, the Network has made a

fundamental difference in the care of children with ASD and their families.

Shared

goals

Clinical Care

It is important that all network sites provide family-centered, interdisciplinary team-based care using the ATN care model. In 2015, the Network's 14 Sites of Excellence provided medical care to nearly 40,000 patients spanning diverse communities. The Network increased patients served by over 9,000 individuals since 2014. In 2015, 17,000 children were screened across the Network for ASD. Over 5,000 of those children received a new ASD diagnoses. Continuing care is a critical component to the ATN care model. Nearly 17,000 individuals with ASD were seen for continuing care. Development of a Care Model Manual

To better meet the demand of building capacity of autism specific medical care, the ATN is currently developing a manual for medical facilities as a framework for providing the ATN Care Model. The goal of this manual is to assist autism providers with a basic structure on how to provide the Network's model of autism care to help better serve individuals with ASD and their families. The manual will also provide primary care physicians with one-page summaries on how to support and serve children with ASD.

Network Clinical Projects

ATN Registry

Along with providing care to children with ASD, our sites work diligently on building a unique medical registry for ASD. Since its inception, our sites have enrolled over 7,000 subjects into the Registry. The Registry has behavioral and medical data from a subgroup of children seen for care through the sites. A smaller subset of these children have longitudinal data as well as biomaterials in the Registry. The data from these subjects has yielded important insights on the scope and prevalence of medical co-morbidities associated with ASD, the relationships among medical co-morbidities and neurobehavioral symptoms of ASD, and the use of various therapeutic approaches in this population. The data has also been useful in the formulation of expert consensus guidelines for the clinical management of ASD. Research utilizing the Registry data has resulted in 30 published manuscripts in peer-reviewed, scientific journals including the Journal of Autism and Developmental Disorders, Pediatrics, and the Journal of Developmental and Behavioral Pediatrics. Figures 1 and 2 provide a snapshot of the baseline and longitudinal data that is currently available. The registry has a very rich, well characterized dataset that is available for secondary data analysis. Researchers interesting in utilizing ATN data can access the query tool or request data by visiting www.asatn.org.

Family Integration

The Network’s Family Advisory Committee (FAC) was created in 2011. The network seeks to involve and be guided by families at all levels. The FAC was created to ensure representation of children’s and families’ perspectives in all areas of the Network. The FAC guides and partners in all Network activities to help improve quality and delivery of care; to develop family-centered, family-friendly “service standards” for all families and their children with an ASD; to build a system that supports family-centered care; and to ensure the relevance of ATN/AIR-P research agenda, policies, and strategic clinical priorities to families. The FAC is composed of two parent representatives per site.

The FAC was particularly active in 2015. The parent members contributed their personal stories to a book that will give hope for autism families, participated in strategic planning meetings for the ATN Registry Call-Back Research Study and in reviewing and authoring tool kits, blogs, manuscripts and research proposals. The FAC played an important role in developing the Learning Network and in the development of new AIR-P projects. The FAC parent leaders on the bi-national committee and in their local advisory groups are doing stellar family-centered and patient-centered work to change the course for improved health outcomes and quality of life for families and children with ASD.

Examples of FAC Network Involvement in 2015

Family Navigator

From a family-centered care perspective, the Network understands the importance of providing ongoing care and support to families while their children are waiting for appointments or receiving post-diagnosis autism care. This is why the Network has prioritized the funding and development of Family Navigation structures. The intent of the Family Navigator role is to provide support to families in navigating the complex medical system, including community intervention and support resources. The Network is actively examining the role of these professionals to better understand the role of the position, the purpose for and the infrastructure needed to support a model for family navigation. In 2015, family navigators in the Network supported close to 18,000 families across the US and Canada.

Training, Dissemination, and Outreach

Broadening the reach is an important goal of every participating site. Through its sites, the Network does significant outreach within and beyond communities, providing educational experiences to families

and professionals who provide direct care to this population. Each site is dedicated to providing training and outreach events in their communities. In 2015, the Network hosted more than 1,000 training, dissemination, and outreach events around the US and Canada reaching over 50,000 professionals, students, and families. Tool Kits

The Network develops educational tools designed to support families and providers of children affected by autism in the management of their care. The tools provide information on a focused topic with a specific goal such as supporting a family in making a health related decision for their child with ASD. In 2015, the Network released 3 new tool kits: 1) EEG Guide for Parents 2) EEG Guide for Providers and 3) Puberty and Adolescence, bringing the total number of Network tool kits to 22. To date, over 250,000 toolkits have been downloaded from the Autism Speaks website by families, teachers, clinicians, and community providers. In addition to downloading the tool kits and distributing copies, over 12,000 flash drives containing all of the tool kits have been disseminated by the Network throughout the autism community. Since families and professionals can make copies of the toolkits, the download of over 250,000 tool kits is an underestimation of the distribution. All 14 sites rely on the tool kits as part of the standard of care they provide to families and individuals with autism. The table below lists the tool kits developed to date.

ATN/AIR-P Tool Kits

1. ABA Guide for Parents a c 2. Behavioral Health Treatments b c 3. Blood Draws for Parents 4. Blood Draws for Providers a 5. Constipation Guide for Parents 6. Delivering Feedback - A Professionals' Guide and Videos 7. Dental Provider's Guide 8. EEG Guide for Parents 9. EEG Guide for Providers 10. Feeding Behavior a 11. Medication Decision Aid

12. Melatonin and Sleep Problems 13. Pica Guide for Parents a 14. Pica Guide for Providers a 15. Puberty & Adolescence 16. Safe Medication Use 17. Sleep Quick Tips for Parents a 18. Sleep Strategies for Children with ASD a b 19. Sleep Strategies for Teens with ASD a 20. Toileting Guide for Parents a b c 21. Video: Vision Exam for Individuals 22. Visual Supports

a Available in Spanish b Available in French c Available in Somali

To download the tool kits: https://www.autismspeaks.org/atn/tool-kits or www.airpnetwork.org

In 2015, the Network worked to evaluate the effectiveness of the tool kits and find ways to improve them for future use. Four hundred individuals provided feedback about the tool kits in 2015. 65% of the respondents were professionals and 35% were parents of individuals with ASD. 93% of the respondents found the Network tool kits helpful and 93% would recommend them to someone else. 89% of the parents and 100% of the professionals found the tool kits helpful. 93% of parents and 100% of professionals would recommend the tool kit to someone else. Healthcare Disparities Projects

The Network is committed to better identifying and increasing services to underserved populations throughout the US and Canada. Recognizing the need to address disparities in healthcare as these relate to autism, the Network took a two pronged approach to respond to the needs in their communities. The Network sites were required to engage in the design of project activities that would address their own healthcare disparities - many of these continue as on-going training and outreach

programs and have led to network-wide funded strategies such as ECHO Autism (see next section). The second approach was to create a separate workgroup that would research and consider strategies to address network-wide healthcare disparities. The Healthcare Disparities Workgroup became a network-wide group that initiated a two-part study, which included a site- level survey and more detailed catchment area and service area analysis. The site level survey assessed the local, clinical, and patient characteristics of each of the 14 network sites to identify underserved populations and barriers to healthcare delivery. Building on part one, the second part of the study used geospatial mapping software (ArcGIS), to analyze whether sites are serving individuals at risk for not accessing healthcare services within their hospital’s defined catchment area. Each site defined the catchment area and used U.S. Census data and Area Deprivation Index (ADI) scores to identify zip codes with high risk individuals. Two Canadian sites were excluded from the analysis because there was no equivalent to the U.S. Census data and zip codes. After analyzing the data from 12 ATN/AIR-P sites, the percentage of high needs individuals within the catchment area and within the service area were identified and presented in a full report to the network.

Current Network Signature Research Projects

Research Activities

The Network is a rich resource for supporting research to advance medical care for individuals with ASD. The Network has funded over 35 research studies since 2008. The Registry Call Back Assessment (RCBA), DSM 5 study, Family Navigation study, ECHO Autism, Learning Network, and Dental and Oral Healthcare are just a few of the signature research studies that are currently funded. ECHO Autism

Extension for Community Healthcare Outcomes (ECHO) was originally designed to build local healthcare capacity and improve access to best practice care for minorities and underserved rural populations in New Mexico. ECHO represents an innovative telemedicine-based platform that connects local PCPs with specialists at academic medical sites during weekly ECHO clinics. During ECHO clinics, specialists provide education in best-practice treatment protocols, case-based learning, and co-management. In March 2015, the team at the ATN/AIR-P site at the University of Missouri (UM) piloted the first ECHO Autism clinic. The Network will build on the UM’s pilot to examine the effectiveness of ECHO Autism in increasing: 1) rates of ASD screening during 18-month well-child visits in underserved communities, 2) the proportion of underserved children with ASD who receive screening, appropriate care for sleep problems and constipation, and 3) the monitoring of underserved children with psychotropic medications. These outcomes will be achieved by increasing provider knowledge, improving clinical practice/behavior, and enhancing provider self-efficacy in caring for children with ASD across a large multisite sample of PCPs in underserved communities. The research phase of this study will begin on September 1, 2016 and continue until August 31, 2018. Learning Network

Over the past several years, the Network has measurably improved: the screening and development of care plans for insomnia and constipation; and side effects monitoring of atypical anti-psychotic medication for children with autism. To build on our past success in quality improvement, the Network partnered with the Anderson Center to develop a Learning Network. Learning Networks are multicenter

collaborations that engage patients, families, clinicians, and researchers to improve care and outcomes, use data to conduct research, and develop and disseminate innovative, evidence-based interventions to achieve improved health results. The Learning Network will develop and test best practices and strategies for change. In so doing, we expect to improve care for all children and decrease disparities in care and outcomes. The initial target population includes children ages 6-12 followed at participating Network sites. The initial aims are to increase the percentage of children who receive routine health services (e.g., dental care, primary care, vision and hearing screenings) as recommended by the American Academy of Pediatrics and to increase the percentage of parents who rate their child’s physical health, general health and quality of life as very good or excellent using the NIH developed PROMIS (Patient-Reported Outcomes Measurement Information System) measures. The parent reported data will be collected with a mobile app to support data collection; provide easy access to tool kits and care team member contact information. This study will continue through August 2020. Improving Participation in Dental Care and Oral Health Outcomes for Underserved Children with

Autism Spectrum Disorder (ASD)

This study is a randomized controlled trial to compare the efficacy of the established ATN/AIR-P Dental Tool kit to a combined regimen involving the Dental Toolkit and a parent-mediated behavioral intervention. Study objectives include improving home dental hygiene, oral health, and compliance with dental procedures in underserved populations with ASD. This AIR-P signature study is funded through August, 2019. Longitudinal Study of ATN registry participants Through Autism Speaks funding, the ATN shifted their focus in 2015 from registry enrollment to the Registry Call Back Assessment (RCBA) study. The study will recruit 600-700 registry participants that will complete a battery of assessments over a 2 year period. The objective of the study is to better understand long-term outcomes associated with ASD and the relationship of medical co-morbidities to these outcomes. The aims for the study are to describe the trajectory of major medical co-morbidities (Sleep, GI, anxiety, hyperactivity and Anthropometrics) and describe the longitudinal relationship between medical co-morbidities and behavioral / functional outcomes. This study is funded through August, 2017 Family Navigation Study

The Autism Speaks funding through the ATN allowed for the development of a family navigation study to evaluate the current state of family navigation services within the Network and the impact of receiving family navigation services on families. In 2015, a survey and focus group discussion took place with Family Navigators, site leaders, and caregivers. Early findings informed a prospective study that is currently evaluating the impact of family navigation services on caregiver activation/engagement and stress. This prospective study will serve as a pilot for a larger study to build justification for these positions in hospital settings. This study is funded through August, 2017

Comparison of DSM-IV-TR and DSM-5 Diagnostic Criteria for Autism Spectrum Disorder

There was initial concern about the change in diagnosis being impacted by the new DSM-5. Most of the studies that were performed comparing the DSM-IV and DSM-5 utilized retrospective data. The Network was in a perfect position to conduct a prospective study comparing the DSM-IV and the DSM-5 diagnostic criteria for ASD. The study will examine whether specificity and sensitivity of DSM-5 ASD diagnosis relative to DSM-IV-TR ASD diagnosis is associated with IQ, comorbid behavior problems, age or ASD symptom severity. The study has completed enrollment and data collection and are currently drafting a manuscript.

8/19/2016 First Impressions: Strategies to Enhance Initial Adult Care Visits for Transitioning Youth with ASD

First Impressions, in collaboration with AIR-P, will work with community health center pediatric and adult primary care clinics to pilot an intervention designed to prepare youth and their families for transition, increase the capacity of physicians and office staff in primary care adult clinics to welcome referred youth with ASD, and establish a single point of contact in the adult primary care office.

Pilot Studies and analyses of secondary data

Along with current signature research projects, the AIR-P is currently funding additional pilot studies and secondary data analysis. The current pilot studies are conducting research in the areas of Disparities, Gastrointestinal and Behavior, and Nutrition, Obesity, and Physical Activity.

Pilot Studies Disparities

Characterizing underserved populations participating in the ATN: Evaluating disparity through demographic influences (Disparities and Demographics)

Exploration of the development and trajectory of Daily Living Skills in children and adolescents with autism spectrum disorders (Daily Living Skills)

Exploration of the relationship between race/ethnicity and behavioral comorbidities and medication treatment in children with autism spectrum disorder (Comorbidities and Medication)

Gastrointestinal

Two-phase study of probiotics for quality of life through GI and emotional stability in youth with ASD and anxiety (Probiotics)

o This research effort proposes to explore the microbiome-mental/physical function connection for ASD, GI dysfunction, and anxiety. If altering the gut microbiome results in better GI and emotional function, it could improve quality of life for children with ASD and their parents.

Physical Activity and Anxiety

Physical exercise to reduce anxiety in underserved children with ASD (Physical Exercise)

o This research proposal will examine the feasibility and efficacy of a physical exercise intervention to reduce anxiety in children from underserved families. Such a program will aid in the development of an evidence-based physical exercise intervention toolkit for the treatment of anxiety as well as other behaviors and improvement of physical health in children with ASD from underserved populations.

Sleep

Clonidine for sleep disturbance in children with ASD (Clonidine)

o This study is a randomized double-blind, placebo-controlled (PBO), parallel groups study to test the efficacy of Clonidine (CLN) following a brief sleep hygiene intervention. This effort will allow the investigators to evaluate the feasibility of conducting a much larger multisite trial to address the general lack of systematic data available to guide practitioners.

Medical Guidelines

It is important that the work the Network is doing impacts care for families today. Through the HRSA funding, the Network has published five clinical care guidelines in Pediatrics on 1) the management of constipation, 2) the identification, evaluation, and management of insomnia, 3) evaluation and medication choice for ADHD symptoms, 4) creating an individualized treatment plan targeting irritability and problem behaviors, and 5) the assessment and treatment of anxiety. Irritability guidelines and the anxiety guidelines were developed in 2015 and published in February 2016. These clinical care guidelines help guide primary care providers when treating their patients with autism. To access the guidelines: http://www.airpNetwork.org/site/c.7oJGLPPsFiJYG/b.8303673/k.2FAB/Guidelines.htm

Abstracts

In 2015, Network members had numerous abstracts and presentations accepted to scientific meetings based on findings from various Network research projects as well as the ATN Registry. A total of 20 abstracts were accepted for presentation in 2016 for the annual Pediatric Academic Society (PAS) (2), International Meeting for Autism Research (IMFAR) (16), and SLEEP (2) meetings. These abstracts add to the 100 abstracts previously accepted for presentations at scientific meetings by our investigators (2010-2014). Additionally, so far in 2016, a total of 22 abstracts have been presented. Publications Publications are another great metric of the Network’s success. In 2015, Network members published a total of 13 manuscripts based on Network research in scientific journals. The addition of these manuscripts brought the total number of Network publications, to date, up to 70. Additionally, so far in 2016, 29 manuscripts have been published by Network investigators, including a supplement in Pediatrics in February 2016, 7 have been submitted to journals, and 28 are in progress. Including the 2016 publications, the Network has published nearly 100 manuscripts on topics including GI, nutrition, creatine deficiency, obesity, sleep, and health services in ASD Full lists of all Network abstracts and publications can be found on www.asatn.org.

Leveraged funding

The Network has been successful in leveraging Autism Speaks investment to advance the mission of the network. Since 2008, Autism Speaks has provided approximately 19 million dollars in support. This funding has leveraged additional dollars to support initiatives that improve care for individuals with ASD throughout the network centers. Consequently, from 2008-2020, the ATN has leveraged an additional 42 million dollars from HRSA to serve as the AIR-P. This has provided supplemental funding to the centers for specialized research projects, guideline development and the creation of evidence-based practices as well as quality improvement projects. The success and the leveraging of funds and resources was expanded when the centers themselves began to leverage their position in the network to secure additional funding from their institutions for support of clinical activities, or additional research from external funders based on network affiliation or previous pilot work. During the current grant cycle

(2014-2017), the centers have leveraged over 27 million dollars in additional resources for research project activities that are utilizing registry data, building cross-collaborations with other centers, and complementing the work from these to advance autism research and clinical care. Advances in Autism Research and Care Webinars As part of the dissemination and mentoring activities, the Network holds a monthly webinar series titled “Advances in Autism Research & Care (AARC)” which alternates autism research and care themes. The webinar series is available to all Network members, Combating Autism Act Initiative (CAAI)-sponsored programs, the entire LEND (Leadership Education in Neurodevelopmental and related Disabilities) and DBP (Developmental-Behavioral Pediatrics) Fellowship Networks, various other autism and pediatric organizations, collaborators, primary care providers, as well as autism advocates. Research webinars feature Network investigators, often junior investigators, presenting their work in various stages of development while care focused themes cover hot topics in the field of autism and promote idea generation for future research. In 2015, webinars on transition, family engagement, the MCHAT-R, and healthcare disparities were presented along with multiple webinars providing updates on Network research studies. Since the start of the AARC webinar series, we’ve observed attendance ranging from 25-200 people. Topics for the 2016 series include research updates, common comorbidities, and telemedicine. To watch previously recorded AARC webinars visit the Network's YouTube page: https://www.youtube.com/user/ASATNAIRPNetwork

Network Sites' Involvement with Autism Speaks

The sites have been and continue to be very supportive of the mission of Autism Speaks.

Light It Up Blue

The 14 sites actively participate during the Light It Up Blue campaign season. Every year, the Autism Speaks founder’s office directs an invitation letter to each of the sites with campaign materials to kick off the season. The staff and FAC parents work effortlessly to put on “Wear Blue to Work” days, staff resource information tables at the hospitals, and give presentations within their community along with many other activities to raise awareness on autism. In 2015, the sites were successful in having 23 buildings "Go Blue", all 14 sites had “Wear Blue to Work Day”, five sites staffed resource information tables at their main children’s hospital, five sites had several social media postings on Facebook and Twitter, two websites went “blue color scheme” in the month of April, and one local news channel reached out to a Network pediatrician for a live interview on ASD. Additionally, several sites worked closely with their affiliated universities and Greek system of

fraternities and sororities to encourage activities such as blue ribbons wrapped around trees and posting

of information flyers around the community, businesses, and campuses. Some sites reported their

parent leaders making the staff “Blue Spaghetti” for lunch and “blue frosted cookies” for snack time.

Many of our sites partner with local community-based organizations and businesses and are extremely

successful in raising awareness for April’s Autism Awareness Month.

Autism Speaks Walks

The Network has very active and engaged sites for the Autism Speaks signature fundraising walk events throughout the United States and Canada. Every site participates in their local Walk Now for Autism Speaks event through the staffing of the site’s resource booth. At the Walks, resource booths staffed by Network members will offer families information on research opportunities, tool kits, resources and referrals, and information on clinical care. In 2015, three of the Network sites, The Thompson Center at the University of Missouri in Columbia, The Lurie Center for Autism at Massachusetts General Hospital, and the Center for Autism and Neurodevelopmental Disorders at UC Irvine, participated in more than one local walk by attending two to three additional walk events per year. Ten of the Network sites organized a Walk Team and on average fundraised a little over $2,000 each. Since not every site is in an Autism Speaks main market, not all participate in Walk Kick-off events. In 2015, seven sites were engaged in either presenting at or part of the organizing of a Walk Kick-Off event. Additionally, three of the Network’s sites participated as members on a Walk Committee.

Autism Speaks Mission Delivery

In addition to the aforementioned engagement activities from across the Network, the sites are very open to partnering with Autism Speaks local chapters and other departments to deliver the mission of raising public awareness on autism. In particular, the sites collaborate with Autism Speaks staff to develop a local chapter where one may not exist in a key market area (CHOP has been engaged to support development of a local chapter in their market), join in the planning of Town Hall events on specific topics to their local community, or apply for Autism Speaks Family Services (AS FS) Community Grant opportunities addressing the areas of education/training, recreation and community activities, young adult/adult services and technology. Additionally, one of the Network pediatricians sits on the Autism Speaks local chapter Board of Directors. The sites have actively assisted the Autism Speaks Autism Response Team (ART) in identifying resources for families in need. The sites assist even if a Network site does not exist in the local community of the inquiring parent. The professionals and parents at our sites are very well connected to an expanded network of resources. Linking with the ART Team has been an effective partnership augmenting the referrals given to families in need who call Autism Speaks.

Demographics and Diagnosis

Variable n (%)

Gender

Male 5826 (83.6)

Female 1146 (16.4)

Race

Caucasian/White 5230 (79.7)

African/Black 504 (7.7)

Other/Multiracial 485 (7.4)

Asian 340 (5.2)

Ethnicity Hispanic 682 (10.3)

Primary caregiver education level

Less than high school 275 (4.4)

Finished high school 1065 (17.0)

Some college 2042 (32.5)

Bachelor’s degree (BA, BS) 1756 (28.0)

Post-graduate degree 1145 (18.2)

ASD Diagnosis

Autism 5010 (73.3)

Asperger’s 537 (7.9)

PDD/NOS 1282 (18.8)

Autism Spectrum Disorder 2 (0.03)

Age (n, mean ± SD) 6984, 6.2 ± 3.4

CBCL t-scores

Variable n mean ± SD

Emotionally Reactive 3731 62.2 ± 10.5

Anxious/Depressed 6186 58.7 ± 9.3

Somatic Complaints 6186 59.5 ± 8.6

Withdrawn 3731 71.2 ± 10.4

Sleep Problems 3719 59.0 ± 10.8

Attention Problems 6186 65.9 ± 10.0

Aggressive Behavior 6186 61.4 ± 10.6

Internalizing Problems 6185 63.1 ± 9.8

Externalizing Problems 6186 59.9 ± 11.5

Total Problems 6185 64.6 ± 10.4

Affective Problems 6176 63.0 ± 9.4

Anxiety Problems 6176 60.9 ± 10.1

Pervasive Developmental

Problems

3724

73.4 ± 9.4

Attention Deficit/Hyperactivity

Problems

6175

62.2 ± 8.6

Oppositional Defiant Problems 6175 59.9 ± 9.2

Withdrawn/Depressed 2455 64.3 ± 9.2

Social Problems 2455 64.9 ± 8.8

Thought Problems 2455 68.7 ± 8.8

Rule-Breaking Behavior 2455 57.0 ± 6.9

Somatic Problems 2447 57.9 ± 9.0

Conduct Problems 2451 59.0 ± 8.3

Medications and Parent Form

Questions

Variable n (%)

Medications*

On ADHD meds 758

(10.9)

On Alpha agonists 450

(6.4)

On Anticonvulsants 141

(2.0)

On SSRIs 406

(5.8)

On Atypical

antipsychotics

404

(5.8)

On Melatonin 699

(10.0)

Parental Concerns

Aggression 3067

(48.1)

Mood swings 3551

(55.8)

Self-injurious 2054

(32.2)

Sleep problems 2170

(42.4)

GI problems 1982

(38.8)

Eating problem 3847

(60.3)

Lost or losing skills 1740

(27.4)

Social interactions 5196

(81.6)

Behavioral/Educational

Interventions

Any behavioral or

educational services4897

(83.5)

Speech therapy 3772

(54.0)

Behavioral therapy 1141

(16.3)

Occupational therapy 2972

(42.5)

Developmental

therapy

328

(4.7)

Physical therapy 961

(13.8)

Verbal behavior

training

149

(2.1)

Learning

center/resource room

1122

(16.1)

Family therapy 209

(3.0)

Academic tutoring 394

(5.6)

Social skills training 1209

(17.3)

* Medication classes are from

the Medication form and do not

incorporate information from

“other med” text entries.

ADOS, IQ, CSHQ, PedsQL, Vineland, and SSP

Variable n mean ± SD

Calibrated ADOS severity score

5984 7.2 ± 1.9

IQ* 5260 75.6 ± 23.4

CSHQ

Total 5010 46.7 ± 11.1

Bedtime Resistance 5010 9.1 ± 3.3

Sleep Onset Delay 5010 1.7 ± 0.8

Sleep Duration 5010 4.3 ± 1.7

Sleep Anxiety 5010 6.1 ± 2.1

Night Wakings 5010 4.5 ± 1.6

Parasomnias 5010 9.6 ± 2.2

Sleep Disordered Breathing 5010 3.5 ± 1.0

Daytime Sleepiness 5010 10.8 ± 6.8

PedsQL

Total Scale 6013 65.1 ± 15.9

Physical Functioning 6016 74.3 ± 20.0

Emotional Functioning 5981 65.3 ± 20.8

Social Functioning 5975 52.6 ± 22.4

School Functioning 5237 61.7 ± 20.0

Psychosocial Health 5985 59.7 ± 16.6

Vineland

Adaptive Behavior

Composite Standard Score 5852 71.4 ± 12.4

DLS Standard Score 6047 75.0 ± 14.4

Socialization Standard

Score6050 70.3 ± 12.1

Communication Standard

Score6043 73.5 ± 16.2

Motor Skills Standard Score 4661 80.0 ± 13.6

Short Sensory Profile

Total3258

130.9 ±

24.0

Tactile Sensitivity 3289 26.7 ± 5.4

Taste/Smell Sensitivity 3265 12.3 ± 5.7

Movement Sensitivity 3289 12.6 ± 3.1

Underresponsive/Seeks

Sensation3288 21.0 ± 6.4

Auditory Filtering 3284 17.0 ± 5.0

Low Energy/Weak 3284 24.2 ± 6.7

Visual/Auditory Sensitivity 3289 17.4 ± 4.9

* Overall IQ uses scores from

Stanford-Binet (Full Scale and

Abbreviated), Mullen (ELC Std

Score), WASI (Full-2), DAS-II

(SA and EY Lower and Upper),

WISC-IV (Full Scale), WPPSI-III

(Full Scale), and Bayley

(Cognitive composite) by

availability in this order.

ATN Registry

Baseline Data

For secondary data analysis opportunities or to learn more about the ATN/AIR-

P Network Data visit: ASATN.org/ ASATN-Query

Figure 1

Figure 2

ATN Registry Longitudinal Data

Item Baseline (BL)

mean ± SD (n=) or

n(%) yes response

N with BL and

1st Follow-up

N with BL, 1st &

2nd Follow-up

N with BL, 1st, 2nd,

& 3rd Follow-up

N with BL & 2nd

Follow-up

N with BL & 3rd

Follow-up

ABC Irritability Subscale 14.2 ± 9.9 (n=2753) 1033 475 170 787 406

PedsQL Total Scale 65.1 ± 15.9 (n=6013) 2530 1320 661 1928 1217

CGS Severity of Autism 4.1 ± 1.1 (n=2312) 496 161 295

CGI Level of Autism1

3.3 ± 0.9 (n=671) 219 62 219 98

Medications2 4179 2699 1633 3233 2219

On ADHD meds 758 (10.9)

On Alpha agonists 450 (6.4)

On Anticonvulsants 141 (2.0)

On SSRIs 406 (5.8)

On Atypical antipsychotics 404 (5.8)

On Melatonin 699 (10.0)

Sleep Problems3

2170 (42.4)

2079 1055 486 1573 913

Neurological Problems3

729 (14.3)

2070 1052 483 1565 915

GI Problems3

1982 (38.8)

2084 1060 489 1574 918

Eating Problems3

3847 (60.3)

2084 1343 652 1990 1252

Anxiety Problems3

3741 (58.8)

2630 1337 644 1981 1251

Sensory Problems3

4885 (76.6)

2648 1339 649 1983 1252

Social Interactions3

5196 (81.6)

2639 1338 649 1983 1250

Aggression3

3067 (48.1)

2640 1343 653 1987 1257

Self-Injurous3

2054 (32.2)

2648 1342 654 1985 1263

Repetitive Thoughts and Behavior3

4273 (67.1) 2646 1345 655 1990 1260

Lost or Losing Skills3

1740 (27.4)

2644 1347 656 1993 1260

Hyperactivity3

4377 (68.7)

2647 1342 656 1987 1256

Attention Span3

5224 (82.0)

2640 1342 651 1985 1254

Mood Swings3

3551 (55.8)

2632 1339 651 1986 1257

Any Behavioral or Educational Services3

4897 (83.5) 2510 1310 649 1914 1206

Any CAM Interventions3

1462 (22.9)

2647 1353 661 1999 1268

IQ4

75.7 ± 23.4 (n=5260) 102

Vineland Adaptive Behavior Composite Std Score

71.4 ± 12.4 (n=5852) 232

Communication5

72.4 ± 23.0 (n=563)

CELF-P2 Core Language Std Score 3-6

79.0 ± 17.2 (n=59)

CELF-IV

Core Language Std Score 5-8

84.3 ± 21.0 (n=46)

Core Language Std Score 9-12

77.2 ± 24.6 (n=42)

Core Language Std Score 13-21

93.1 ± 24.1 (n=14)

PLS-IV TLS Std Score

64.5 ± 21.5 (n=220)

1 CGI starts at 1st follow-up since it is a measure of improvement: BL=1st FU, 1st FU=2nd FU, 2ndFU=3rd FU

2 Counts for available longitudinal data are the for each medication class

3 from Parent form

4 IQ uses scores from Stanford-Binet (Full Scale and Abbreviated), Mullen (ELC Std Score), WASI (Full-2), DAS-II (SA

and EY Lower and Upper), WISC-IV (Full Scale), WPPSI-III (Full Scale), and Bayley (Cognitive composite) by availability

in this order.

5 Communication uses scores from PLS-IV (TLS Std Score), OWLS (Oral Composite Std Score), CELF-P2 (Core

Language Std Score), and CELF-IV (Core Language Std Score) by availability in this order.

A First of its Kind Collaborative Network Advancing the Medical Care

for Children with Autism Spectrum Disorders

The ATN is a collaboration of Autism Speaks and 14 of the

finest children’s hospitals and academic institutions in North

America, specializing in multidisciplinary care for children

with autism. Together these centers of excellence work to

improve medical care in autism by developing best

practices and providing a platform for research. ATN best

practices are shared with physicians and medical facilities

nationwide to improve outcomes for all children with autism.

www.autismspeaks.org/ATN

Autism Treatment Network

(ATN)

Autism Intervention

Research Network for

Physical Health (AIR-P)

The AIR-P builds on the strengths of the ATN by conducting

research on evidence-based interventions to improve the

physical health and well-being of children and adolescents

with autism spectrum disorders and other developmental

disabilities, development of evidence-based guidelines, and

dissemination of guidelines and critical information on

network research findings. www.airpnetwork.org

HRSA Collaborative Agreement UA3 MC 11054 to the

Massachusetts General Hospital

Clinical Care • Providing care to nearly 40,000 patients per year through ATN Centers of Excellence

• Family Navigators supported over 17,600 families across the US and Canada.

• Developing standardized multidisciplinary model of care for ASD

• Implementing and evaluating models of Family Navigation services

Clinical Registry• First and largest medical registry in ASD, over 7,000 subjects spanning diverse communities

Accomplishments

Capacity-Building, Training, Dissemination, and Outreach• Completed and published 22 Tool Kits covering a variety of medical and behavioral challenges in autism

• Over 240,000 downloads

• In 2015, the network provided over 1,000 training, dissemination, and outreach events around the US

and Canada, reaching nearly 50,000 professionals, students, and family members

• Focus on reaching underserved populations

• Authored over 80 blogs for the autism community

• Monthly webinar series: Advances in Autism Research & Care

o Attendance ranges between 35-200 for a variety of topics, including genetics, psycho-

pharmacology, discussion of DSM5, and an overview of network Registry data; open to

LEND/DBP/CAAI programs

By linking the research focus of the AIR-P with the clinical focus of the ATN, this combined network has made a fundamental

difference in the care of children with ASD and their families.

The Network’s priority is Optimal Health and Quality of Life for Individuals with ASD.

Increasing access to care

Improving quality health

Across the lifespan

Research Accomplishments Network has published nearly 100 manuscripts on topics including:

GI, metabolic, sleep, nutrition, communication, and health services

Conference presentations of 125+ peer reviewed abstracts

Completed 25 AIR-P funded studies (2008 – 2015) | Actively supporting 6 new studies (2015-present)

More than 2,000 research participants from the ATN are enrolled in AIR-P studies

Guideline Development Practice guidelines developed based on existing evidence from the literature and expert consensus where

gaps in evidence exist

• Published the first and only guidelines for management of constipation, sleep, and ADHD

symptoms in ASD (2012 Pediatrics supplement)

• 2 guidelines for management of irritability and agitation as well as anxiety were published in

the 2015-2016 Pediatrics supplement

For more information www.autismspeaks.org/ATN | ATN@autismspeaks.org |www.airpnetwork.org

To utilize the ATN registry data for secondary data analysis: http://asatn.org/asatn-query

ATN Registry

A clinical registry including medical and behavioral data on individuals (2-17 years 6 months of age) from ATN centers that

meet criteria for ASD.

Longitudinal Study of ATN registry participants

A study to better understand long-term outcomes associated with ASD and the relationship of medical co-morbidities to

these outcomes.

Comparison of DSM-IV-TR and DSM-5 Diagnostic Criteria for Autism Spectrum Disorder

To compare DSM-IV-TR and DSM-5 criteria for Autism Spectrum Disorder. Using a sample of 250 children and

adolescents who meet DSM-IV-TR criteria for ASD and 150 children and adolescents referred for diagnosis who do not

meet DSM-IV-TR criteria. The study will examine whether specificity and sensitivity of DSM-5 ASD diagnosis relative to

DSM-IV-TR ASD diagnosis is associated with IQ, comorbid behavior problems, age or ASD symptom severity.

Family Navigation Study

Describing models of Family Navigation services and evaluating impact of family navigation services on caregiver

activation/engagement and stress.

Healthcare Disparities project

To identify health disparities among families served by ATN sites and to identify patients from catchment area that do not

access specialty care at ATN centers to inform ways to reduce barriers to healthcare for all individuals with ASD

Development of a Care Model Manual

Develop a technical manual to assist medical facilities in developing an autism center or re structure existing clinics to help

better serve individuals with autism spectrum disorders and their families. Provide “one pagers” from manual chapters

that are a practical tool that can be used by primary care physicians to care for children with ASD in their setting.

ECHO Autism

Extension for Community Healthcare Outcomes (ECHO) is an innovative telemedicine-based platform that connects local

PCPs with specialists at academic medical centers during biweekly ECHO clinics. This study will examine the

effectiveness of “ECHO Autism” in increasing 1) rates of ASD screening during 18-month well-child visits in underserved

communities, 2) the proportion of underserved children with ASD who receive screening, appropriate care for sleep

problems and constipation, and 3) the monitoring of underserved children with psychotropic medications.

Improving Participation in Dental Care and Oral Health Outcomes for Underserved Children with ASD.

This study is a randomized controlled trial (RCT) to compare the efficacy of the established ATN/AIR-P Dental Tool Kit to a

combined regimen involving the Dental Tool Kit and a parent-mediated behavioral intervention. Study objectives include

improving home dental hygiene, oral health, and compliance with dental procedures in under-served populations with

Autism Spectrum Disorder.

First Impressions: Strategies to Enhance Initial Adult Care Visits for Transitioning Youth with Autism Spectrum

Disorders

First Impressions will work with community health center pediatric and adult primary care clinics to test an intervention

designed to prepare youth and their families for transition, increase the capacity of physicians and office staff in primary

care adult clinics to welcome referred youth with ASD, and establish a single point of contact in the adult primary care

office.

Learning Network

The AIR-P/ATN is expanding into a Learning Network (LN) in collaboration with the Anderson Center. We will employ

strategies that have been successfully used in other pediatric LNs: collect real-time data for performance feedback and

research; engage multidisciplinary clinical teams and family partners; focus on the reduction of unintended care process

variation by identifying, adopting and testing best practices; involve providers from underserved communities; and use

content and improvement experts to guide evidence-informed change.

Active Autism Speaks Funded Projects

Active AIR-P Funded Projects

Network Sites:

1. Children’s Hospital of Los Angeles

2. Children’s Hospital of Philadelphia

3. Cincinnati Children’s Hospital

4. Lurie Family Autism Center/ MassGeneral Hospital

5. Nationwide Children’s Hospital / The Ohio State

University

6. Saint Louis University School of Medicine

7. University of Arkansas for Medical Sciences

8. Toronto Autism Network (Holland Bloorview Rehab,

Surrey Place Centre and the Hospital for Sick Children)

9. University of Alberta/Glenrose Rehab Hospital

10. University of California – Irvine

11. University of Missouri – Columbia

12. University of Pittsburgh

13. University of Rochester

14. Vanderbilt University Medical Center