OBJECTIVES

In the United States, autistic individuals experience disproportionate physical and mental health challenges relative to non-autistic individuals, including higher rates of co-occurring and chronic conditions and lower physical, social, and psychological health-related quality of life. The Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multicenter research network for scientific collaboration and infrastructure that aims to increase the life expectancy and quality of life for autistic individuals, with a focus on underserved or vulnerable populations. The current paper describes the development of the AIR-P Research Agenda.

METHODS

Development of the research agenda involved an iterative and collaborative process between the AIR-P Advisory Board, Steering Committee, and Autistic Researcher Review Board. The methodology consisted of 3 phases: (1) ideation and design, (2) literature review and synthesis; and (3) network engagement.

RESULTS

Six core research priorities related to the health of autistic individuals were identified: (1) primary care services and quality, (2) community-based lifestyle interventions, (3) health systems and services, (4) gender, sexuality, and reproductive health, (5) neurology, and (6) genetics. Specific topics within each of these priorities were identified. Four cross-cutting research priorities were also identified: (1) neurodiversity-oriented care, (2) facilitating developmental transitions, (3) methodologically rigorous intervention studies, and (4) addressing health disparities.

CONCLUSIONS

The AIR-P Research Agenda represents an important step forward for enacting large-scale health-promotion efforts for autistic individuals across the lifespan. This agenda will catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health-promotion.

What’s Known on the Subject:

In the United States, autistic individuals experience disproportionate physical and mental health challenges relative to non-autistic individuals, including higher rates of co-occurring and chronic conditions and lower physical, social, and psychological health-related quality of life.

What this Study Adds:

This research agenda represents an important step forward for enacting large-scale health-promotion efforts for autistic individuals across the lifespan. This agenda will catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health-promotion.

In the United States, autistic individuals experience disproportionate physical and mental health challenges relative to non-autistic individuals, including higher rates of co-occurring and chronic conditions and lower physical, social, and psychological health-related quality of life.15  Funded by the Health Resources and Services Administration, Maternal and Child Health Bureau, the Autism Intervention Research Network on Physical Health (AIR-P) seeks to establish and maintain a research network to enhance the physical health and well-being of autistic children, adolescents, and adults, particularly for underserved and vulnerable populations. The current paper describes the AIR-P Research Agenda, developed through collaborations with researchers, practitioners, stakeholders, and autistic individuals; literature reviews; and consensus-building. This research agenda will be iteratively revised as the field continues to advance to ensure that ongoing efforts within the network reflect state-of-the-art research, priorities, and practice.

The research agenda development process involved a collaborative process among the AIR-P Advisory Board (n = 33), Steering Committee (n = 14), and Autistic Researcher Review Board (ARRB) (n = 8). The Advisory Board is composed of researchers and practitioners across the United States who have expertise in autism and support research efforts within the network. The Steering Committee is composed of interdisciplinary researchers, practitioners, and other stakeholders with professional expertise, as well as personal experience working with or caring for autistic individuals across the lifespan. The ARRB is composed of autistic researchers and scholars in the United States, United Kingdom, and Canada who leverage their unique personal experiences to inform research that seeks to enhance the lives of autistic individuals. The network engagement phase of the methodology (described below) included a subsample (n = 24) from the Advisory Board (n = 13; 54%), Steering Committee (n = 6; 25%), and ARRB (n = 5; 21%). This subsample included individuals with diverse levels of training and education (PhD: n = 10, 41%; MD/PhD: n = 5; 21%; MD: n = 4, 17%; students and residents: n = 3, 13%; and master’s level: n = 2, 8%). The sample also included those who identified as autistic (n = 5; 21%), those with an autistic family member or close friend (n = 12; 50%), and caregivers (n = 5; 21%).

The methodology consisted of 3 phases:

  1. Ideation and design: through a series of planning meetings, the Steering Committee identified preliminary priority domains based on their areas of expertise and background knowledge of the literature;

  2. Literature review and synthesis: the Steering Committee created a targeted annotated bibliography of quantitative and qualitative research in the identified domains and synthesized the findings in a literature review to refine the domains; and

  3. Network engagement: experts across the network (n = 24) engaged in a 2-step process via Qualtrics surveys to identify priority research topics within each domain.

In the first step, the sample provided open-ended responses regarding the highest-priority research topics within each of the research domains identified during the series of planning meetings and review of the literature. The open-ended responses were organized utilizing Dedoose coding software6  and coalesced into 6 to 10 priority research areas within each domain. In the second step, participants were asked to participate in a follow-up survey to identify the top 3 priority research areas from the options within each domain, with consideration of the following criteria:

  1. Need/urgency (ie, the influence of the research topic on the physical health and well-being of autistic individuals; severity of consequences [eg, number of autistic individuals affected by the issue]; and presence of critical gaps in knowledge);

  2. Research impact (ie, the ability of the knowledge gained from this research topic to translate to meaningful progress in 5 to 10 years and the potential to lead to improvements in physical health status, quality of care, public health, or policy over the longer term); and

  3. Person/family-centeredness (ie, how well the research topic reflects the experiences and priorities of autistic individuals and their families).

The research topics most frequently endorsed in participants’ top 3 rankings across all categories were identified. Cross-cutting research domains—that is, research areas that apply to all domains and topic areas—emerged throughout all steps of the process.

The AIR-P Research Agenda, along with the highest-ranking research topic areas identified in the network engagement phase, are outlined in Table 1. The research agenda consists of 6 core research priority domains, each with critical implications for autistic individuals’ physical health, and 4 cross-cutting priorities that applied across all domains.

TABLE 1

The Autism Intervention Research Network on Physical Health (AIR-P) Year 1 Research Agenda

Research Priority/Top 3 Research Topicsan (%)b
Primary care services and quality: research that enhances primary care models that support autistic individuals across the lifespan  
 Autistic individuals’ self-determination (ie, capacity for autonomy, self-efficacy, and decision-making) in health care 19 (79) 
 Primary care provider training and specialized protocols for working with autistic individuals 18 (72) 
 Care and management around stress, anxiety, and/or suicidal ideation; referrals for psychiatric care 14 (58) 
Community-based lifestyle interventions: research that enhances lifestyle interventions that support autistic individuals across the lifespan  
 Lifestyle interventions that engage communities, families, children, and peers to promote social connectedness and enhance relationships 17 (71) 
 Lifestyle interventions that build self-advocacy capacities and important skills for development and independence 16 (67) 
 Engaging families and individuals in physical activity and nutrition, increasing community supports, and strengthening the evidence base for lifestyle interventions 12 (50) 
Health systems and services: research that facilitates health care services and systems, particularly transitions and care coordination for autistic individuals  
 Health care navigation for adolescents and adults and models of effective transition practices 16 (67) 
 Training primary care providers in the adult health care system to serve autistic individuals 14 (58) 
 Educating families and individuals about transitions and adult care 14 (58) 
Gender, sexuality, and reproductive health: research that promotes sexual health among autistic individuals and addresses systemic barriers for women and gender nonconforming autistic individuals  
 Developing sexual health curricula for autistic individuals and promoting awareness and knowledge 17 (71) 
 Understanding and addressing individual, caregiver, and family education and needs pertaining to sexual health 14 (58) 
 Understanding and supporting youth in areas related to intersectionality, LGBTQ+ issues, and gender and sexual identity 12 (50) 
 Self-determination around sexual behavior 12 (50) 
Neurology: research that develops and tests the neurologic and developmental outcomes of motor-based interventions for autistic individuals  
 Co-occurring conditions, (eg, motor dysfunction, sensory issues, seizures, and sleep) and corresponding accommodations, supports, and interventions 18 (75) 
 Understanding developmental neurologic trajectories and adult outcomes 12 (50) 
 Neurologic care coordination with other health care providers 12 (50) 
Genetics: research that facilitates access to genetic testing as a means to enhance physical health among autistic individuals and their families  
 Genetics counseling and physician–patient communication 15 (63) 
 Identifying genes linked to co-occurring conditions or treatment responses 13 (54) 
 Addressing the autistic community’s concerns about genetics research and moving away from cure/cause research toward increasing quality of life 12 (50) 
Research Priority/Top 3 Research Topicsan (%)b
Primary care services and quality: research that enhances primary care models that support autistic individuals across the lifespan  
 Autistic individuals’ self-determination (ie, capacity for autonomy, self-efficacy, and decision-making) in health care 19 (79) 
 Primary care provider training and specialized protocols for working with autistic individuals 18 (72) 
 Care and management around stress, anxiety, and/or suicidal ideation; referrals for psychiatric care 14 (58) 
Community-based lifestyle interventions: research that enhances lifestyle interventions that support autistic individuals across the lifespan  
 Lifestyle interventions that engage communities, families, children, and peers to promote social connectedness and enhance relationships 17 (71) 
 Lifestyle interventions that build self-advocacy capacities and important skills for development and independence 16 (67) 
 Engaging families and individuals in physical activity and nutrition, increasing community supports, and strengthening the evidence base for lifestyle interventions 12 (50) 
Health systems and services: research that facilitates health care services and systems, particularly transitions and care coordination for autistic individuals  
 Health care navigation for adolescents and adults and models of effective transition practices 16 (67) 
 Training primary care providers in the adult health care system to serve autistic individuals 14 (58) 
 Educating families and individuals about transitions and adult care 14 (58) 
Gender, sexuality, and reproductive health: research that promotes sexual health among autistic individuals and addresses systemic barriers for women and gender nonconforming autistic individuals  
 Developing sexual health curricula for autistic individuals and promoting awareness and knowledge 17 (71) 
 Understanding and addressing individual, caregiver, and family education and needs pertaining to sexual health 14 (58) 
 Understanding and supporting youth in areas related to intersectionality, LGBTQ+ issues, and gender and sexual identity 12 (50) 
 Self-determination around sexual behavior 12 (50) 
Neurology: research that develops and tests the neurologic and developmental outcomes of motor-based interventions for autistic individuals  
 Co-occurring conditions, (eg, motor dysfunction, sensory issues, seizures, and sleep) and corresponding accommodations, supports, and interventions 18 (75) 
 Understanding developmental neurologic trajectories and adult outcomes 12 (50) 
 Neurologic care coordination with other health care providers 12 (50) 
Genetics: research that facilitates access to genetic testing as a means to enhance physical health among autistic individuals and their families  
 Genetics counseling and physician–patient communication 15 (63) 
 Identifying genes linked to co-occurring conditions or treatment responses 13 (54) 
 Addressing the autistic community’s concerns about genetics research and moving away from cure/cause research toward increasing quality of life 12 (50) 
a

Research topics reflect topics that were identified in the top 3 individual rankings. Rankings were obtained separately for need or urgency, research impact, and person or family-centeredness, and the topics with the highest rankings across all categories are displayed.

b

This column reflects the number and percentage of experts across the network (n = 24) who ranked each research topic in their top 3 rankings of either need or urgency, research impact, or person or family-centeredness.

Primary Care Services and Quality

Relative to their non-autistic counterparts, autistic children and adults have significantly more physician visits and medications prescribed and higher medical costs and total expenditures per treated patient.710  Nonetheless, they create a smaller burden on health insurers because of their relatively low receipt of necessary treatment and services.1114  In addition, there are pronounced racial, ethnic, and gender health inequities in access to quality medical services.13,14 

Of particular concern, only half of autistic individuals receive comprehensive primary care consistent with the medical home model as recommended by the American Academy of Pediatrics. This model is defined as care from a personal provider that is preventive, family-centered, compassionate, culturally appropriate, accessible, comprehensive, and coordinated.15  A range of patient, provider, and systemic obstacles to an optimal medical home for autistic individuals has been cited in the literature.1619  These obstacles perpetuate unmet health care needs related to physical and mental health, prescription medications, and preventive care, and increase emergency service utilization.20  Specific research priorities that emerged included promoting autistic individuals’ self-determination (ie, capacity for autonomy, self-efficacy, and decision-making) in health care (n = 19, 79%), enhancing primary care provider training (n = 18, 72%), and mental health and psychiatric care (n = 14, 58%).

Community-Based Lifestyle Interventions

Although many autistic individuals experience challenges related to lifestyle, including nutrition, gastrointestinal issues, food selectivity,21  obesity and associated chronic health conditions,16,22, physical activity and motor performance,23  sleep,2426  stress and anxiety,27,28  social connectedness,29,30  and substance use,31  these challenges are variable in the autistic population. In addition, findings on the effectiveness of interventions have been inconclusive because of reliance on small sample sizes and subsequent failure to obtain robust effect sizes on physical health outcomes.22,25  Research priorities that emerged included lifestyle interventions that promote social connectedness (n = 17, 71%), build self-advocacy capacities (n = 16, 67%), and engage families and communities (n = 12, 50%).

Health Systems and Services

Although health systems and services emerged as an important priority, a focus on transitions and coordination appeared to be particularly salient. Autistic individuals and their families characterize their experiences as a “lifetime of difficult transitions.” They report difficulty using services, lack of source of care, inadequate insurance coverage, and lack of shared decision-making and care coordination. There are also a limited number of specialized service providers and resources that are often highly fragmented and governed by stringent and restrictive program and funding criteria.3235  Further, autistic individuals frequently encounter a poor person–environment fit in health care and service settings and uncertainty about the roles of parents in facilitating transitions.34,35  Transition challenges are heightened for Black and low-income youth and those with comorbid conditions.36,37  Access to a medical home is an important predictor of receiving health care transition services because autistic youth with a medical home are almost 3 times as likely to receive health care transition services as youth without a medical home.38  Specific research priorities that emerged included supporting health care navigation and models of transition practices (n = 16, 67%), training primary care providers in the adult health system (n = 14, 58%), and educating individuals and families about transition care (n = 14, 58%). In recognition of the need for further research on health care transitions, the Maternal and Child Health Bureau has prioritized research, performance measurement, and data analysis around transitions. As an example, they invested in the Autism Transitions Research Project for Youth and Young Adults with Autism Spectrum Disorders. The AIR-P will collaborate with the Autism Transitions Research Project over the course of the grant.

Gender, Sexuality, and Reproductive Health

Mounting evidence suggests that gender-biased diagnostic and clinical criteria, along with actual sex and gender differences, may lead to the delayed recognition of autism in females.39  Barriers to service access for autistic women may continue into adulthood, particularly for health services related to reproductive health and pregnancy.40  Autistic adults are less likely to be gender-conforming than non-autistic adults. Belonging to a sexual or gender minority group is associated with higher rates of unmet health care needs among autistic people and, in turn, poorer physical health.41  Indeed, autistic individuals often receive insufficient support regarding their sexuality and gender identity.42,43  Further compounding these challenges, autistic individuals are at higher risk of sexual victimization and abuse compared with non-autistic people. These experiences are associated with suicidal or self-injurious behavior and psychiatric hospitalizations.44  Autistic adults report less perceived and actual sexual knowledge, which may increase the risk of sexual victimization.45  Specific research priorities that emerged included developing sexual health curricula for autistic individuals (n = 17, 71%), promoting sexual health education among individuals and families (n = 14, 58%), understanding intersectional identity issues (n = 12, 50%), and promoting self-determination (n = 12, 50%).

Neurology

Although autistic individuals have been found to experience motor impairments, including impairments related to gross and fine motor, postural control, and imitation and praxis, such impairments are not universal nor specific to autism.46,47  The current research base surrounding motor-based interventions has shown some promising results, but is largely based on case studies and individuals without intellectual disability, or have yielded small-effect sizes.4850  Rigorous studies that include autistic individuals with heterogeneous behavioral and intellectual abilities are needed to objectively evaluate (1) motor dysfunction, and (2) motor-based interventions that target fundamental motor skills, social communication, and proprioceptive awareness.5153  Specific research priorities that emerged were understanding and addressing co-occurring neurologic conditions (n = 18, 75%) and neurologic developmental trajectories and adult outcomes (n = 12, 50%), as well as coordinating neurologic care (n = 12, 50%).

Genetics

Although autism has been found to be highly heritable,54  genotyping is particularly complex due to frequently co-occurring conditions. Although a proportion of autism is attributable to common variants, rare copy-number variants and protein-disrupting, single-nucleotide variants have also been shown to significantly contribute to the etiology.55  The diagnostic relevance of genomewide small common and rare copy-number variants continues to provide evidence of the high diagnostic yield of microarray for genetic testing in autistic children.56  These findings support the utility of enhancing access to genetic testing for autistic individuals. Research priorities that emerged were genetic counseling (n = 15, 63%), identifying genes linked to co-occurring conditions or treatment responses (n = 13, 54%), and addressing the autistic community’s concerns about genetics research and moving away from cure and cause research toward increasing quality of life (n = 12, 50%).

Neurodiversity-Oriented Care

The neurodiversity movement challenges deficit-oriented conceptualizations of disability, reframing the disability as a valuable minority identity that does not require corrective treatment.57  The neurodiversity movement has proliferated in recent decades, primarily across college campuses, as a means to promote the success of diverse learners. However, the majority of literature on neurodiversity has been largely conceptual, with limited efforts to adapt a neurodiversity approach to health care.58  This perspective encourages the promotion of self-determination, advocacy, and decision-making among autistic individuals and is informed by autistic individuals themselves.

Facilitating Developmental Transitions

Research with nationally representative samples of autistic youth reveal profound developmental, educational, and health-related struggles in the transition to adulthood38,59  As previously mentioned, these challenges are often because of, in part, systemic factors that impede their capacity to succeed and thrive.60  Transition-related challenges occur across the lifespan for autistic individuals and represent important opportunities for intervention and support.

Methodologically Rigorous Intervention Studies

Our review of the literature revealed that translating research on physical health for autistic individuals into interventions is constrained by several factors. These include research with small samples, a limited quantity of existing interventions that target physical health promotion, and a lack of measurement strategies that capture multidimensional developmental outcomes.46,61 

Addressing Health Disparities

There is a well-established research base regarding the need for research and interventions that address health and health care disparities among marginalized and underserved autistic populations.7,14,36  This includes a range of populations, including women, racial and ethnic minorities, and individuals from low socioeconomic backgrounds.

This paper presents the development of the AIR-P Research Agenda. Our agenda catalyzes autism research in currently underrepresented topic areas (eg, gender, sexuality, and reproductive health), particularly for autistic populations that experience disproportionate disparities. Our agenda adopts a neurodiversity orientation to health promotion for autistic individuals. This model contrasts with the traditional deficit-oriented medical model that emphasizes identifying a cure or pinpointing the etiology of autism at the expense of promoting well-being and thriving among autistic individuals in accordance with their self-reported needs, experiences, and priorities.

This agenda lays the foundation for research conducted within the AIR-P Network. Moving forward, the ARRB will collaborate with the Steering Committee in the continuous development and refinement of the overall research domains. In addition, there will be systematic efforts to catalog research that emerged during the first year of the AIR-P to ensure that priorities are representative of the current research and emerging trends. There will also be continuous consensus-building efforts to ensure alignment within the network.

The AIR-P Research Agenda represents an important step forward for enacting large-scale health-promotion efforts for autistic individuals across the lifespan. The AIR-P looks forward to addressing these critical research priorities and continuing to advance this research agenda as the network spurs research and innovation.

The Autism Intervention Research Network on Physical Health National Coordinating Center and the Steering Committee created a targeted annotated bibliography of quantitative and qualitative research in identified domains and drafted the initial manuscript; the National Coordinating Center, Steering Committee, and Autistic Researcher Review Board participated in the qualitative research and reviewed and revised the manuscript; the Health Resources & Services Administration Maternal and Child Health Bureau contributed to the conception and design of the work, participated in revising the manuscript, and provided guidance and overarching feedback to this work; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

FUNDING: Supported by the Health Resources and Services Administration of the US Department of Health and Human Services under the Autism Intervention Research Network on Physical Health, grant UT2MC39440.

     
  • AIR-P

    Autism Intervention Research Network on Physical Health

  •  
  • ARRB

    Autistic Researcher Review Board

1
Cashin
A
,
Buckley
T
,
Trollor
JN
,
Lennox
N
.
A scoping review of what is known of the physical health of adults with autism spectrum disorder
.
J Intellect Disabil
.
2018
;
22
(
1
):
96
108
2
Kamp-Becker
I
,
Schröder
J
,
Remschmidt
H
,
Bachmann
CJ
.
Health-related quality of life in adolescents and young adults with high functioning autism-spectrum disorder
.
Phychosoc Med
.
2010
;
Aug
31
(
7
):
10.3205/psm000065
3
Khanna
R
,
Jariwala-Parikh
K
,
West-Strum
D
,
Mahabaleshwarkar
R
.
Health-related quality of life and its determinants among adults with autism
.
Res Autism Spectr Disord
.
2014
;
8
(
3
):
157
167
4
Kring
SR
,
Greenberg
JS
,
Seltzer
MM
.
The impact of health problems on behavior problems in adolescents and adults with autism spectrum disorders: implications for maternal burden
.
Soc Work Ment Health
.
2010
;
8
(
1
):
54
71
5
Lajonchere
C
,
Jones
N
,
Coury
DL
,
Perrin
JM
.
Leadership in health care, research, and quality improvement for children and adolescents with autism spectrum disorders: Autism Treatment Network and Autism Intervention Research Network on Physical Health
.
Pediatrics
.
2012
;
130
Suppl 2
:
S62
S68
6
Dedoose
.
Available at: https://www.dedoose.com/. Accessed March 16, 2021
7
Liptak
GS
,
Stuart
T
,
Auinger
P
.
Health care utilization and expenditures for children with autism: data from U.S. national samples
.
J Autism Dev Disord
.
2006
;
36
(
7
):
871
879
8
Croen
LA
,
Najjar
DV
,
Ray
GT
,
Lotspeich
L
,
Bernal
P
.
A comparison of health care utilization and costs of children with and without autism spectrum disorders in a large group-model health plan
.
Pediatrics
.
2006
;
118
(
4
):
e1203
e1211
9
Leibson
C
,
Weaver
A
,
Myers
S
, et al
.
Objective estimates of direct-medical costs among persons aged 3 to 38 years with and without research-defined autism spectrum disorder ascertained during childhood: a population-based birth-cohort study
.
Value Health
.
2020
;
23
(
5
):
595
605
10
Leslie
DL
,
Martin
A
.
Health care expenditures associated with autism spectrum disorders
.
Arch Pediatr Adolesc Med
.
2007
;
161
(
4
):
350
355
11
Cummings
JR
,
Lynch
FL
,
Rust
KC
, et al
.
Health services utilization among children with and without autism spectrum disorders
.
J Autism Dev Disord
.
2016
;
46
(
3
):
910
920
12
Fenning
RM
,
Steinberg-Epstein
R
,
Butter
EM
, et al
.
Access to dental visits and correlates of preventive dental care in children with autism spectrum disorder
.
J Autism Dev Disord
.
2020
;
50
(
10
):
3739
3747
13
Turcotte
P
,
Mathew
M
,
Shea
LL
,
Brusilovskiy
E
,
Nonnemacher
SL
.
Service needs across the lifespan for individuals with autism
.
J Autism Dev Disord
.
2016
;
46
(
7
):
2480
2489
14
Bishop-Fitzpatrick
L
,
Kind
AJH
.
A scoping review of health disparities in autism spectrum disorder
.
J Autism Dev Disord
.
2017
;
47
(
11
):
3380
3391
15
Brachlow
AE
,
Ness
KK
,
McPheeters
ML
,
Gurney
JG
.
Comparison of indicators for a primary care medical home between children with autism or asthma and other special health care needs: National Survey of Children’s Health
.
Arch Pediatr Adolesc Med
.
2007
;
161
(
4
):
399
405
16
Croen
LA
,
Zerbo
O
,
Qian
Y
, et al
.
The health status of adults on the autism spectrum
.
Autism
.
2015
;
19
(
7
):
814
823
17
Golnik
A
,
Ireland
M
,
Borowsky
IW
.
Medical homes for children with autism: a physician survey
.
Pediatrics
.
2009
;
123
(
3
):
966
971
18
Nicolaidis
C
,
Raymaker
DM
,
Ashkenazy
E
, et al
.
“Respect the way I need to communicate with you”: health care experiences of adults on the autism spectrum
.
Autism
.
2015
;
19
(
7
):
824
831
19
Zerbo
O
,
Qian
Y
,
Ray
T
, et al
.
Health care service utilization and cost among adults with autism spectrum disorders in a US integrated health care system
.
Autism Adulthood
.
2019
;
1
(
1
):
27
36
20
Nicolaidis
C
,
Raymaker
D
,
McDonald
K
, et al
.
Comparison of health care experiences in autistic and nonautistic adults: a cross-sectional online survey facilitated by an academic-community partnership
.
J Gen Intern Med
.
2013
;
28
(
6
):
761
769
21
Geir
B
,
Lyudmila
P
,
Maryam
D
, et al
.
Gastrointestinal alterations in autism spectrum disorder: what do we know?
Neurosci Biobehav Rev
.
2020
;
118
:
111
120
22
Corvey
K
,
Menear
KS
,
Preskitt
J
,
Goldfarb
S
,
Menachemi
N
.
Obesity, physical activity and sedentary behaviors in children with an autism spectrum disorder
.
Matern Child Health J
.
2016
;
20
(
2
):
466
476
23
Macdonald
M
,
Esposito
P
,
Ulrich
D
.
The physical activity patterns of children with autism
.
BMC Res Notes
.
2011
;
4
(
1
):
422
24
Delahaye
J
,
Kovacs
E
,
Sikora
D
, et al
.
The relationship between health-related quality of life and sleep problems in children with autism spectrum disorders
.
Res Autism Spectr Disord
.
2014
;
8
(
3
):
292
303
25
Karthikeyan
R
,
Cardinali
DP
,
Shakunthala
V
,
Spence
DW
,
Brown
GM
,
Pandi-Perumal
SR
.
Understanding the role of sleep and its disturbances in autism spectrum disorder
.
Int J Neurosci
.
2020
;
130
(
10
):
1033
1046
26
Zaidman-Zait
A
,
Zwaigenbaum
L
,
Duku
E
, et al
.
Factor analysis of the children’s sleep habits questionnaire among preschool children with autism spectrum disorder
.
Res Dev Disabil
.
2020
;
97
:
103548
27
Nimmo-Smith
V
,
Heuvelman
H
,
Dalman
C
, et al
.
Anxiety disorders in adults with autism spectrum disorder: a population-based study
.
J Autism Dev Disord
.
2020
;
50
(
1
):
308
318
28
White
SW
,
Oswald
D
,
Ollendick
T
,
Scahill
L
.
Anxiety in children and adolescents with autism spectrum disorders
.
Clin Psychol Rev
.
2009
;
29
(
3
):
216
229
29
Müller
E
,
Schuler
A
,
Yates
GB
.
Social challenges and supports from the perspective of individuals with Asperger syndrome and other autism spectrum disabilities
.
Autism
.
2008
;
12
(
2
):
173
190
30
Stice
LV
,
Lavner
JA
.
Social connectedness and loneliness mediate the association between autistic traits and internalizing symptoms among young adults
.
J Autism Dev Disord
.
2019
;
49
(
3
):
1096
1110
31
Castellanos
D
,
Carcache
L
,
Ng
C
.
Substance use in youth with autism spectrum disorder
.
Addict Disord Their Treat
.
2020
;
19
(
2
):
118
122
32
Vohra
R
,
Madhavan
S
,
Sambamoorthi
U
,
St Peter
C
.
Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions
.
Autism
.
2014
;
18
(
7
):
815
826
33
Milen
MT
,
Nicholas
DB
.
Examining transitions from youth to adult services for young persons with autism
.
Soc Work Health Care
.
2017
;
56
(
7
):
636
648
34
Kuo
AA
,
Crapnell
T
,
Lau
L
,
Anderson
KA
,
Shattuck
P
.
Stakeholder perspectives on research and practice in autism and transition
.
Pediatrics
.
2018
;
141
(
Suppl 4
):
S293
S299
35
Shattuck
PT
,
Lau
L
,
Anderson
KA
,
Kuo
AA
.
A national research agenda for the transition of youth with autism
.
Pediatrics
.
2018
;
141
(
Suppl 4
):
S355
S361
36
Cheak-Zamora
NC
,
Yang
X
,
Farmer
JE
,
Clark
M
.
Disparities in transition planning for youth with autism spectrum disorder
.
Pediatrics
.
2013
;
131
(
3
):
447
454
37
Walsh
C
,
Jones
B
,
Schonwald
A
.
Health care transition planning among adolescents with autism spectrum disorder
.
J Autism Dev Disord
.
2017
;
47
(
4
):
980
991
38
Rast
JE
,
Shattuck
PT
,
Roux
AM
, %
Anderson
KA
,
Kuo
A
.
The medical home and health care transition for youth with autism
.
Pediatrics
.
2018
;
141
(
Suppl 4
):
S328
S334
39
Estrin
GL
,
Milner
V
,
Spain
D
,
Happé
F
,
Colvert
E
.
Barriers to autism spectrum disorder diagnosis for young women and girls: a systematic review
.
Rev J Autism Dev Disord
.
2021
;
8
:
454
470
40
Steward
R
,
Crane
L
,
Mairi Roy
E
,
Remington
A
,
Pellicano
E
.
“Life is much more difficult to manage during periods”: autistic experiences of menstruation
.
J Autism Dev Disord
.
2018
;
48
(
12
):
4287
4292
41
Hall
JP
,
Batza
K
,
Streed
CG
,
Boyd
BA
,
Kurth
NK
.
Health disparities among sexual and gender minorities with autism spectrum disorder
.
J Autism Dev Disord
.
2020
;
50
(
8
)
3071
3077
42
Hillier
A
,
Gallop
N
,
Mendes
E
, et al
.
LGBTQ + and autism spectrum disorder: experiences and challenges
.
Int J Transgend Health
.
2019
;
21
(
1
):
98
110
43
Barnett
JP
,
Maticka-Tyndale
E
.
Qualitative exploration of sexual experiences among adults on the autism spectrum: implications for sex education
.
Perspect Sex Reprod Health
.
2015
;
47
(
4
):
171
179
44
Mandell
DS
,
Walrath
CM
,
Manteuffel
B
,
Sgro
G
,
Pinto-Martin
JA
.
The prevalence and correlates of abuse among children with autism served in comprehensive community-based mental health settings
.
Child Abuse Negl
.
2005
;
29
(
12
):
1359
1372
45
Brown-Lavoie
SM
,
Viecili
MA
,
Weiss
JA
.
Sexual knowledge and victimization in adults with autism spectrum disorders
.
J Autism Dev Disord
.
2014
;
44
(
9
):
2185
2196
46
Bhat
AN
,
Landa
RJ
,
Galloway
JC
.
Current perspectives on motor functioning in infants, children, and adults with autism spectrum disorders
.
Phys Ther
.
2011
;
91
(
7
):
1116
1129
47
Provost
B
,
Lopez
BR
,
Heimerl
S
.
A comparison of motor delays in young children: autism spectrum disorder, developmental delay, and developmental concerns
.
J Autism Dev Disord
.
2007
;
37
(
2
):
321
328
48
Baranek
GT
.
Efficacy of sensory and motor interventions for children with autism
.
J Autism Dev Disord
.
2002
;
32
(
5
):
397
422
49
McCleery
JP
,
Elliott
NA
,
Sampanis
DS
,
Stefanidou
CA
.
Motor development and motor resonance difficulties in autism: relevance to early intervention for language and communication skills
.
Front Integr Nuerosci
.
2013
;
7
:
30
50
Virues-Ortega
J
,
Julio
FM
,
Pastor-Barriuso
R
.
The TEACCH program for children and adults with autism: a meta-analysis of intervention studies
.
Clin Psychol Rev
.
2013
;
33
(
8
):
940
953
51
Wilson
RB
,
McCracken
JT
,
Rinehart
NJ
,
Jeste
SS
.
What’s missing in autism spectrum disorder motor assessments?
J Neurodev Disord
.
2018
;
10
(
1
):
33
52
Rinehart
NJ
,
Jeste
S
,
Wilson
RB
.
Organized physical activity programs: improving motor and non-motor symptoms in neurodevelopmental disorders
.
Dev Med Child Neurol
.
2018
;
60
(
9
):
856
857
53
Ruggeri
A
,
Dancel
A
,
Johnson
R
,
Sargent
B
.
The effect of motor and physical activity intervention on motor outcomes of children with autism spectrum disorder: A systematic review
.
Autism
.
2020
;
24
(
3
):
544
568
54
Bai
D
,
Yip
BHK
,
Windham
GC
, et al
.
Association of genetic and environmental factors with autism in a 5-country cohort
.
JAMA Psychiatry
.
2019
;
76
(
10
):
1035
1043
55
Bacchelli
E
,
Cameli
C
,
Viggiano
M
, et al
.
An integrated analysis of rare CNV and exome variation in autism spectrum disorder using the Infinium PsychArray
.
Sci Rep
.
2020
;
10
(
1
):
3198
56
AlAyadhi
LY
,
Hashmi
JA
,
Iqbal
M
, et al
.
High-resolution SNP genotyping platform identified recurrent and novel CNVs in autism multiplex families
.
Neuroscience
.
2016
;
339
:
561
570
57
Kapp
SK
.
Autistic Community and the Neurodiversity Movement: Stories from the Frontline
.,
Singapore
:
Palgrave Macmillan
;
2020
58
Nicolaidis
C
.
What can physicians learn from the neurodiversity movement?
Virtual Mentor
.
2012
;
14
(
6
):
503
510
59
Wei
X
,
Wagner
M
,
Hudson
L
,
Yu
JW
,
Shattuck
P
.
Transition to adulthood: employment, education, and disengagement in individuals with autism spectrum disorders
.
Emerg Adulthood
.
2015
;
3
(
1
):
37
45
60
Lai
JKY
,
Weiss
JA
.
Priority service needs and receipt across the lifespan for individuals with autism spectrum disorder
.
Autism Res
.
2017
;
10
(
8
):
1436
1447
61
Sowa
M
,
Meulenbroek
R
.
Effects of physical exercise on autism spectrum disorders: a meta-analysis
.
Res Autism Spectr Disord
.
2012
;
6
(
1
):
46
57

Competing Interests

CONFLICT OF INTEREST DISCLOSURES: The authors have indicated they have no potential conflicts of interest to disclose. The information, content, and/or conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by, the Health Resources and Services Administration, the US Department of Health and Human Services, or the US government.