Autistic Adolescents

and Young Adults:

A Research Agenda

April 2021

Boston University School of Public Health and Boston Medical Center Patient-Centered
Outcomes Research Institute (PCORI) Engagement Award.
 Autistic Adolescents
© 2021
The contents of this document, including (but not limited to) all written material,
and Young Adults:
A Research Agenda
are protected under international copyright and trademark laws. You may not copy,
reproduce, modify, republish, transmit or distribute any material from this document
without express written permission.

PRINCIPAL INVESTIGATORS:
Megan Bair-Merritt, MD, MSCE
Emily F. Rothman, ScD

COLLABORATORS:
Laura Graham Holmes, PhD
Leona M. Ofei, MPH
Pam Palmucci, MSW Candidate (’21)

EXPERT ADVISORS:

Patricia A. Davis, MD, DPH Jenna Markow

Simone Dufresne Nancy Parker, MSW, LICSW
Melinda Ford Ian Pearce
Elizabeth Gomes Catherine Picciotto
Naida Grant Cassandra Rhea
Tia Kennebrew Carlin Rheault
Shari Krauss King, MA, MPH Juliana Ocnean Sanchez

This report was funded through a Patient-Centered Outcomes Research Institute

(PCORI) Eugene Washington PCORI Engagement Award (15154-BMC).

2 © 2021 © 2021 3
 1. INTRODUCTION

Table of Contents
Our Language neurotypical counterparts.8,9 Stigma, discrimination
and exclusionary practices in schools, workplaces,
The language used to describe autism can greatly and by neurotypical peers can compound experiences
affect people on the spectrum and how society of depression, anxiety, loneliness, and the pressure on
views them. Early in our process, our Advisory autistic youth to “camouflage” or hide their authentic
Board acknowledged that language is powerful and selves from others.10,11 The loss and grief experienced
1. INTRODUCTION............................................................................................................................. 3 made choices about which words we would use. The by autistic individuals, their families, friends, and
Board, which comprised autistic people and non- communities is staggering. Moreover, the annual cost
Our Language................................................................................................................................. 3
autistic people, acknowledged that people who are burden of autism in the U.S. was as much as $268
Background..................................................................................................................................... 3 on the spectrum have different preferences about billion in 2015.12 For this reason, supporting the health
the words we use to describe autism and autism of autistic people is a U.S. public health priority.13,14
Impact................................................................................................................................................. 4 status. The Board decided that, for our purposes, Autism Spectrum Disorder (ASD) was not introduced
intention was what mattered the most, and that as
into the Diagnostic and Statistical Manual (DSM) until
Guiding Principles......................................................................................................................... 4 long as speakers were coming from a place of respect
1980.15 As such, it is still a relatively new diagnosis, and
in communications we would accept whatever
discourse about whether autism should be considered
Purpose and Audience............................................................................................................... 5 language felt right to them. However, the Board
a “disorder” or a “neurological variation” continues.16
also noted that there are strong arguments and
Clinicians recognize ASD as a developmental disability
2. PROCEDURES................................................................................................................................. 5 passions on both sides of the debate on the use of
characterized by difficulties in social communication
person-first language (e.g., “person with autism”)
and by restricted, repetitive behavior and interests.17
Process for setting research priorities and providing recommendations and identity-first language (e.g., “autistic person”).
Autistic people also experience challenges with
for study methodology and intervention content...................................................... 5 Because a growing body of scientific and community
receptive and expressive language, atypical social
literature documents the dislike among many
cognition and social perception, executive dysfunction,
1. Selected experts for the Advisory Board........................................................... 5 autistic individuals of person-first language and its
and atypical information processing.17,18 Although a
potential for increasing stigma,1-3 we have chosen to
substantial percentage of autistic people also have
2. Create a list of priority research topics............................................................... 6 use identity-first language in this document.
intellectual disabilities, approximately 69% do not.19
3. Set criteria for priority setting.................................................................................. 6 Research suggests that individuals with acute
Background autism impairments, including delayed speech, motor
4. Establish recommendations for recruitment, intervention functioning impairment, and social interactions, can
design and outcomes measurement.......................................................................... 6 One in 54 U.S. youth are autistic (1.7%).4 By 2025, benefit from early intervention treatment services
approximately 500,000 autistic children will become before the age of 3 years old.20 For autistic individuals
adults.5 As a result, the field is bracing for the increased with less severe challenges, who may be diagnosed later
3. PRIORITY TOPICS IN AUSTISM RESEARCH FOR ADOLESCENTS demand for services, and the U.S. Department of in life but nevertheless experience adversity related to
AND YOUNG ADULTS................................................................................................................. 7 Health and Human Services has specifically called for social communication differences, executive function
research and new interventions to help autistic youth differences, and sensory processing differences,
4. INTERVENTION RESEARCH................................................................................................ 11 make successful transitions to adulthood.6 there is a dearth of services and very few evidence-
The need for new research and effective interventions based interventions. Given that only 65% of autistic
5. RECRUITMENT, INTERVENTION DESIGN AND OUTCOMES to benefit autistic individuals and their families is young adults (ages 19-23 years old) are employed or
MEASUREMENT.......................................................................................................................... 14 overwhelmingly clear. Autistic people face five times receive postgraduate education after high school,21
the odds of suicide attempt compared to the general services and interventions for autistic young adults
6. SUMMARY...................................................................................................................................... 15 population,7 and die 16 years earlier, on average, than are essential for improved health promotion.

4 © 2021 © 2021 5
Impact anti-racism work simultaneously. Almost every Advi-
sory Board meeting included a discussion of the pro-
Previous research agendas to promote health and found impact of structural racism. The Advisory Board 2. PROCEDURES
equity for autistic people have provided important gave voice to the fact that there are more resources,
guidance to entities that develop funding priorities services and options for autistic youth and parents of
for autism research. This research agenda aims to be autistic youth in wealthier and predominantly white
similarly useful for government organizations, foun- communities, and that the marginalization of the
Process for setting research priorities and providing recommendations
dations, health care institutions, academic researchers needs of Black, Hispanic, Asian, Multiracial and other for study methodology and intervention content
and institutes, and other entities engaged in autism people of color intersects with the marginalization ex-
research and health promotion in general.22,23 This perienced by autistic youth.29 The negative synergistic This publication is intended to be used by govern- pand the candidate list. A representative of the lead-
agenda is an important addition to the field because of effect of experiencing racism, classism, and disabili- ment organizations, foundations, health care institu- ership team met individually with each candidate to
its focus on adolescents and young adults, which are ty-based oppression simultaneously challenges thou- tions, academic researchers and institutes, and other explain the purpose of the Advisory Board and respon-
subpopulations that for too long were overlooked and sands of individuals in the U.S. and internationally.30 entities engaged in autism research and health promo- sibilities of members, and to evaluate each candidate’s
are still disproportionately less likely to be the bene- Addressing the dual burden of racism and autism is tion in general. Researchers are encouraged to use this fit for the board. Fit was determined, in part, relative
ficiaries of programming or focus of funded research, put forward by this group as an overarching priority as a guide when prioritizing future studies. Funders are to the goal of establishing an Advisory Board that was
both in the U.S.24 and internationally.25 To this end, encouraged to align resources to address the priorities diverse in terms of participants role (i.e., youth, parent
with funding from a Eugene Washington Patient-Cen- in this research agenda, and to align with one another or providers) and race/ethnicity. Of the Advisory Board
tered Outcomes Research Institute (PCORI) Engage- to reduce duplication of effort. members, 45% identify as Black, Hispanic, Multiracial,
ment Award, we established an Advisory Board of key or another race other than white, and 93% identify as
stakeholders including autistic youth, parents of autis- The process for developing the top research priorities
is described below. female. The service providers represent agencies in-
tic youth, and service providers/advocates to develop cluding BMCAP, AANE, and the Integrated Center for
a comprehensive research agenda focused on issues Child Development (ICCD). One Advisory Board mem-
most important for the health of autistic adolescents
1. Selected experts for the Advisory Board
ber who was a service provider attended one meeting
and young adults. This Advisory Board met approxi- and was subsequently unable to attend, so in effect, the
The first step in our process was to recruit 15 indi-
mately monthly from late 2019 through early 2021 to Board comprised 14 members.
viduals to our expert Advisory Board. Our goal was to
develop this research agenda.
establish an Advisory Board comprising autistic youth,
parents of autistic youth, and service providers and ad-
Guiding Principles 2. Create a list of priority research topics
vocates for autistic youth and families. Some individuals
who were selected to join the Advisory Board identified To formulate the research agenda, our Advisory Board
Our commitment to promoting the health and well-be-
with more than one of these categories (i.e., a parent of divided into three breakout groups (i.e., youth, par-
ing of autistic youth and their families is grounded in
an autistic youth and also an advocate). Advisory Board ents, and service providers/advocates) during our third
four guiding principles. First, consistent with the World that should be addressed at every level of health care, inclusion criteria included having lived or professional meeting. Each group met privately with one facilitator
Health Organization, our definition of health is “a state education and service provision. The needs of autistic experience on the topic of health promotion for autistic from the leadership team and brainstormed adolescent
of complete physical, mental and social well-being and youth of color, and parents of autistic youth of color, youth, having capacity to contribute time or resources health priority topics for research to benefit autistic
not merely the absence of disease or infirmity.”26 Sec- need to be centered going forward. to the project, and living locally to Boston Medical Cen- youth and young adults. Prompts for the brainstorming
ond, we uphold the dictum “Nothing About Us Without
ter, where we planned that monthly in-person meetings
Us,”27 which is an expression meant to assert that the Purpose and Audience would take place.
were: “What do you see as the most pressing (i.e., most
full and direct participation of autistic individuals in the urgent) health issues for autistic individuals ages 11-24
creation of this research agenda is viewed as essential. The purpose of this research agenda is to promote The project leadership team (Bair-Merritt, Palmuc- years old?” and “What topics are important for autistic
Third, we strove for meaningful inclusion of all mem- ci, and Rothman) generated a list of possible Adviso- teenagers and young adults’ wellbeing and should be
research on topics that will support health for autistic
bers of our Advisory Board,28 acknowledging that the ry Board expert participants by asking key stakeholder the target of additional research or receive more atten-
adolescents and young adults and have relevance to
COVID-19 pandemic created an acutely stressful situ- organizations to nominate youth, parents and service tion?” They also were asked: “What interventions do
public health. The findings included in this document
ation for the parents of autistic youth on our Board, providers. Key stakeholder organizations included the you know about that address or solve any of the issues
are organized into three parts including: (1) Priority
as well as the service providers, autistic youth, and the Boston Medical Center Autism Program (BMCAP), the on our list of health issues?” Advisory Board members
topics for autism research for adolescents and young
leadership. It is a testament to the commitment of Ad- Asperger/Autism Network (AANE), the Federation for were encouraged to think of health broadly, as more
adults; (2) Existing intervention research that evaluates Children with Special Needs in Massachusetts, the
visory Board members to autism research and health than just the absence of disease. A total of 21 topics
the efficacy and effectiveness of programs for the pri- Brookline High School Special Education Parent Advi- were generated in the breakout groups.
promotion for autistic youth that they persevered. ority topics; and (3) Stakeholders’ perspectives on in- sory Council, the Metropolitan Council for Educational
Finally, the health and wellbeing of autistic youth and tervention design, and research study recruitment and Opportunity (METCO), the regional Special Education
families of color cannot be promoted without centering outcomes measurement. Parent Advisory Council (SEPAC), and the Threshold 3. Set criteria for priority setting
Program at Lesley University. The Director of BMCAP
(Ms. Shari King) also sent a solicitation to parents of To prioritize research topics, the 21 topics were list-
autistic youth and providers in her network to help ex- ed together on a sheet of newsprint and each Adviso-

6 © 2021 © 2021 7
ry Board member selected the three topics that they 10 were ones where specific interventions could be gramming and providing accessible sexual health in- autistic youth about public versus private sexual behav-
believed to be the most important (i.e., modified identified, and for some, interventions had not been terventions tailored for autistic youth are both critically ior, and to manage impulsivity when it comes to sexual
nominal group technique). Topics were ranked by tested through RCTs. important. behaviors, without shaming them, making them feel
the number of high priority votes that they received. Autism may also increase risk of socially inappropri- blamed or judged for being autistic and sexual, and
Several topics were grouped after the voting process 4. Establish recommendations for ate sexual behavior (SISB) or increase risk that SISB without worsening stigma about autism.
because they were closely related. These included
recruitment, intervention design and will lead to criminal justice contact. SISB are sexual
“Diet, body awareness, and body image,” which was behaviors that occur in public, without others’ consent, (2) Body awareness, body image and
grouped with “healthy food choices,” and with “eat- outcomes measurement
or interfere with activities of daily living, and may in- making healthy nutritional choices:
ing disorder,” and “Sex/sexual health” which was clude criminal sex offending.53 A recent study (N=298)
grouped with “gender identity.” The top 10 high pri- During subsequent Advisory Board meetings,
showed that 1 in 4 autistic adolescents had engaged in Autistic youth often experience sensory functioning
ority issues were selected as high priority issues for members provided input about the following topics:
a person-oriented or public SISB (e.g., public mastur- that is different from neurotypical peers. Eating behav-
this research agenda, and the remaining 11 issues intervention design, study recruitment methods and bation, non-consensual touching) that parents knew ior can be particularly affected by olfactory and visual
were retained as priority issues. materials, and outcomes measurement. For each topic, of,50 which exceeds rates in general samples of youth.54 sensory processing differences.74
members divided into three groups including youth, Online offenses (e.g., downloading child pornography,
Two members of the leadership team (i.e., Ofei and Autistic children are also more likely to be obese, and
parents and service providers/advocates. These smaller sexual communication with children) are an urgent
Graham Holmes) undertook 10 separate reviews of less likely to be physically active, than neurotypical
groups ensured that each participant had space and focus of clinical and research concern in the autism
the research literature in order to identify random- peers.75-77 Qualitative research suggests that some obese
time to express their opinions. After these breakout field.55-58 Despite the public health significance of these
ized controlled trial (RCT)-tested interventions. The
goal of the PCORI engagement award was to identify groups, the full group discussed the topic together. issues, services have focused on intervention after the
topics where two or more RCT-tested interventions The Advisory Board identified the following 10 topics fact rather than prevention.59 This is a substantial prob-
were available for comparative effectiveness re- as being of very high importance for health promotion lem because many autistic youth with SISB are adju-
search (CER). Not every one of the topics in the top for autistic youth: dicated to the juvenile or adult justice systems where
their specific cognitive and emotional needs and lim-
its are unlikely to be recognized or accommodated.60-63
Furthermore, adjudication for sex offenses can make it
almost impossible to live and work in many municipal-
3. PRIORITY TOPICS IN AUSTISM RESEARCH ities subsequently.64
FOR ADOLESCENTS AND YOUNG ADULTS In addition to sexuality and relationships, gender is
a central determinant of health and well-being across
the life course. To highlight gender and sexuality-based
(1) Sex and Sexual Health (inclusive of marginalization, the National Institutes of Health
gender identity): (NIH) uses the phrase “sexual and gender minorities autistic children experience weight stigma during clin-
(SGM)” to refer to those who are lesbian, gay, bisex- ical visits with healthcare providers, and in everyday
ual, asexual, transgender, queer, intersex, or asexual. interactions, and may experience fear, anxiety, anger
Most people on the autism spectrum experience sex-
A substantial proportion of autistic adolescents and and frustration about their weight and how people
ual attraction31 and many are sexually active,32-37 in-
adults are SGM. Up to 22.1% of autistic survey respon- treat them because of their weight.78 Some overweight
cluding teens.38 Up to 70% of autistic adolescent boys
dents are transgender or gender non-conforming (T/ autistic youth develop repetitive/restricted interests in
have engaged in partnered sexual behavior,39,40 and one
GNC).65 Moreover, T/GNC have 4-18 times the odds of weight and body image.78 The Healthy Weight Research
study found that autistic teen girls had comparable sex- Network, a national research network of pediatric obe-
an ASD diagnosis versus cisgender people.66-71 Autistic
ual activity to non-autistic girls.41 survey respondents also identify as sexual minorities sity and autism experts, has recently developed rec-
Sexuality brings opportunities for personal and re- at high rates.37,72 An ASD registry-based study (n=659) ommendations for managing overweight and obesity
lational fulfillment and introduces some preventable found 18.3% of autistic men and 43.4% of autistic in autistic children that acknowledge the dietary and
risks, particularly for youth. In the U.S., half of the 19- women were lesbian, gay, or bisexual (vs. 4.5% of U.S. physical activity challenges faced by autistic youth and
20 million new sexually transmitted infections (STIs) adults).65,73 Thus, autistic SGM are a substantial and in- their parents.77
reported each year affect youth ages 15-24 years old.42 creasingly visible population. Autistic people are more likely to experience eating
Left untreated, HIV and other STIs have serious health The Advisory Board prioritized sexual health and disorders than non-autistic counterparts.79 Research
ing and connection, yet also presents new avenues for
consequences. Teen pregnancy, with higher risk of com- gender identity as key for autistic health promotion. suggests that alexithymia, or a difficulty identifying
health-risking behaviors48 and abuse.49 Autistic youth
plications and opportunity costs, affects more youth in Stakeholders discussed topics like dating, pornography and describing one’s emotional states, could contribute
the U.S. than other industrialized nations.43 Almost 2 are particularly vulnerable to these adverse outcomes to the disparity.79 Issues related to cognitive flexibility
use, and the physical and emotional changes associated
million U.S. youth have experienced sexual assault and because they are excluded from both formal sex edu- with puberty. Participants expressed their frustration and central coherence may also influence eating behav-
9.8% report lifetime sexual abuse,44,45 which can have cation50,51 and the informal learning opportunities that that these health issues are not talked about or taught ior and eating disorder in autistic youth.80 Autistic youth
lifelong health effects.46,47 The ubiquity of the Internet most youth report as beneficial.52 For these reasons, to autistic youth in school. Stakeholders also expressed are also less likely than neurotypical peers to accurate-
and cellular phones brings new opportunities for learn- including autistic youth in existing sexual health pro- concern about SISB and the need to find ways to teach ly perceive their own body size.81 Several autism-spe-

8 © 2021 © 2021 9
cific eating disorder services are in development, but their social connections with other people in tangible expectancy and health outcomes.92 At age 25, remain- (6) Reducing suicide and self-harm
there are presently no guidelines or recommendations or meaningful ways. For example, some autistic youth ing life expectancy for people with a college degree
for providing helping services to autistic people with an need concrete information about where to go to meet is a decade longer than for people who do not have Autistic children are 28 times more likely than neu-
eating disorder.82 new people and opportunities to practice strategies for a high school diploma.93 People with more education rotypical peers to think about or attempt suicide.104
The Advisory Board prioritized diet, body image, making new friends with similar-age peers. also tend to report being in better health and hav- The majority of autistic adults (72%) score significant-
eating disorder, and making healthy nutritional choices ing fewer health conditions and limitations than those
ly above the recommended cut-off for suicide risk in
as a topic because what autistic youth eat and whether (4) Reducing vulnerability to violence, with less education.94,95
psychiatric populations, which is much higher than the
they are getting adequate nutrition was viewed as bullying, and exploitation Autistic youth are underserved in the postsecondary percentage of adults in the general population (33%)
fundamental to all other physical and behavioral health education system. Although the existing secondary (K-
who meet that threshold, adjusting for age and gen-
issues. There was widespread agreement that parents Bullying victimization is a substantial problem for 12) educational system, and practice of inclusion in
der.105 Autistic adults who do not have an intellectual
receive too little information about how they can many autistic youth.84-86 As many as 26% of autistic mainstream classrooms, is imperfect and leaves some
encourage healthy eating by their autistic children and autistic students without adequate support—it is also disability, but do have attention deficit hyperactivity
youth experience bullying in elementary school, 31%
help them establish lifelong healthy relationships with in middle school, and 29% in high school.85 Those who true that many autistic youth are able to access the K-12 disorder (ADHD), are nine times more likely to die from
food and positive body images. are bullied once face a 13.8-fold increased odds of sub- general education curriculum, attend class with neuro- suicide than neurotypical peers.106 One study of adults
sequent bullying victimization as compared to autistic typical peers, and graduate with their classmates. This
(3) Reducing loneliness and social youth who are not bullied.85 For typically developing doesn’t hold true for college and other post-secondary
and autistic youth alike, bullying victimization is asso- educational opportunities, and researchers think this
isolation, and increasing social connections could change.96 Presently only 34.7% of autistic youth
ciated with increases in mental health problems includ-
ing depression, anx- attend college in their first six years after high school.97
The higher-than-average risk of suicide for autistic Furthermore, supports provided to autistic college stu-
people without intellectual disability referenced above iety, and aggressive
behavior.87 Being bul- dents tend not to be individualized or aligned with their
(and in Topic 6, below), may be attributable to social needs such that many autistic students who begin col-
disengagement9 —otherwise known as loneliness or lied can also cause au-
tistic youth to refuse lege do not finish with a degree.98 It is important for au-
social isolation. The lack of a social support system is tistic students to receive proper supports to succeed in
suspected to affect psychological well-being and reduce to attend or engage
in school.88 Because academic, social, and independent living skills aspects
instrumental support.9 Social anxiety may also inhib- of postsecondary education.
it successful socializing for autistic and non-autistic autistic youth may
also have difficulties Notably, there seem to be gender differences in both
people alike. Recent research suggests that part of the diagnosed as autistic in adulthood in the United King-
interpreting complex preparation for college and employment and in the ex-
problem that autistic youth and adults may face in at- dom found that approximately 66% reported suicidal
social situations, they periences of autistic men and women in postsecondary
tempting to enrich social connections is that neurotyp-
may also perceive education and work. In adolescence, autistic boys are ideation, which was 9 times the rate of the general pop-
ical people tend to form negative first impressions of
themselves as being more likely to participate in volunteer or work experi- ulation.107,108 Within the autistic subpopulation, some
autistic people based on “thin slices” of their behavior.83
persecuted or bullied when they are not.89 Autistic indi- ences than girls, and parents are less likely to talk with factors place autistic individuals at elevated risk for
Within seconds, neurotypical people often reject an au-
viduals may also be at increased risk of partner violence autistic daughters about careers and employment than suicidal ideation including having greater unmet sup-
tistic person based on how they come across interper-
victimization, and sexual and financial exploitation.90,91 with sons.99 In adulthood, autistic women are consid- port needs, engaging in self-injurious behaviors, having
sonally—not based on the substance or content of what
they are communicating—and neurotypical people do Advisory Board members voiced the need for classes erably less likely to maintain postsecondary education depression or anxiety,109 and having to “camouflage” or
not change their intentions to avoid social interactions and programs, school policies, workplace trainings, or employment,100 and have vocational trajectories
“mask” their autistic identity to fit in with others.105,108
with that person with increased exposure.83 and other interventions that would reduce autistic that decline over time, regardless of co-occurring in-
Some evidence suggests that academic performance
youths’ vulnerability to all forms of violence and tellectual disability.101
Advisory Board members were vocal about the need and family function do not moderate the association
abuse victimization. While some felt that dating abuse Advisory Board members saw establishing training
for additional intervention research that uncovers how between autistic traits and suicidality,109 suggesting that
prevention, specifically, was less of a priority because for college and university faculty to better support au-
to increase the social connections of autistic youth. interventions to reduce suicide and suicidality should
establishing intimate partnerships is challenging for tistic college students as critical to the health of autis-
Advisory Board members said that they were worried target other factors.
many autistic people, others expressed strong support tic youth. Although some materials about autism and
about isolation causing some autistic youth to not ask
for developing and providing healthy relationships and autistic students are now available to support profes- The Advisory Board expressed strong support for
for help with psychological stress and other problems
violence prevention education to autistic people in as sional university and college faculty and staff, these are additional research that would uncover why autistic
when they were facing them, and that it could cause
widespread a manner as possible. mostly disseminated by advocacy groups, individuals, youth are at markedly increased risk for suicidality
them to wrestle alone with the psychosocial challenges
of adolescence—potentially influencing their behavioral and nonprofit groups.96 As a result, what is critically
and interventions to reduce that risk. Advisory Board
health trajectories in the long-term. Advisory Board (5) Workforce training for college and important professional development is not consistent-
members emphasized that autistic youth often begin
members were aware of social skills groups and university faculty ly available to many educators who would benefit and
typically only provided to faculty and staff who volun- to struggle with feelings of depression and thoughts
interventions that are designed to improve social skills, of self-harm as early as middle school. Interventions,
teer. To serve the 707,000-1.6M autistic youth reaching
but pointed out ways in which social skills classes, The effect of education on health has been observed
adulthood in the U.S. over the next decade, a more sys- therefore, should target younger autistic adolescents as
groups, and interventions often target an autistic in many countries and time periods and is consistent
tematic approach is needed.102,103 well as older adolescents and adults.
person’s behavior for modification without expanding across a wide range of health measures including life

10 © 2021 © 2021 11
(7) Supporting autistic youth and families but educating employers and other community gies across the school day, between school and home,
during transition after high school institutions to make them more receptive to autistic and between schools (i.e., when youth transition from
people. Programs that encourage people to be more elementary to middle school), and too little training
Transition age youth are those ages 14 to 30 years old accepting of neurodiversity, and equip them to make about teaching autistic youth for teachers.114 Teachers
who are in the phase of life when they complete school- their workplaces and services friendly to neurodiverse who educate autistic youth are too rarely provided
ing and training, plan adult career goals, consider people, were supported as high priority. An autistic with specialized support for the extra stressors they
changing their home or living environment to one that youth member of the Advisory Board emphasized that face when including autistic youth in their classes.114
is more independent or without parents and guardians, finding a good system of support after high school
Advisory Board members brought to the fore their
and begin to formulate ideas about their adult lives that is particularly difficult, and the Board agreed that
own unsatisfactory experiences with K-12 public school
may include dating, sex, marriage, and parenting.110 attention to system improvement to support youth
systems. They felt that schools “tend to just move kids
Transitioning from adolescence to mature adulthood is from middle school through adulthood is important.
on the spectrum along,” without helping them achieve
challenging for all people. For those on the spectrum, their full potential. One youth reported that finishing
it may be particularly challenging, and so support for (8) Improving secondary school inclusion high school felt less like an academic achievement
the development of the skills and capacities that they and educational options and more like “surviving a system,” and that “school
need to thrive as adults is essential.110 Unfortunately, teaching, positive behavior support, and Picture Ex-
felt like a pipeline to failure.” One of the experts on
less than 20% of all published autism research, and ap- change Communication System).122 These methods
In recent years the number of autistic youth that the Advisory Board reported that in her experience
proximately 2% of autism research funding in the U.S., are complex and require training and supervision to
have been educated in mainstream schools has in- when families are able to enroll their autistic children
targets the transition age group.111-113 implement effectively.123 For these reasons and others,
creased, but the educational outcomes are worse for in private school, either by working with the school
these students than for neurotypical students or stu- evidence-based practices for autistic youth that are
The Advisory Board expressed frustration and fear district to get that as an accommodation or by paying
dents with other developmental disabilities.114,115 In- tested in university settings rarely make it to commu-
about the fact that autism services often end abruptly privately, the outcomes for children tend to be better.
clusion is not the same as “integration” in the school nity settings like schools.124 Given the lack of consen-
when autistic children graduate from high school. One Other Advisory Board members shared multiple stories sus about how to effectively engage autistic youth in
Board member said it felt to her that providers say setting; inclusion refers to the merging of special ed- about situations in which teachers have been unable
ucation and regular education in order to afford all academic tasks, and that methods teachers are taught
“goodbye and good luck to you” when autistic children to meet the needs of autistic youth in class and resort to use will fail with a substantial proportion of autistic
turn 22 years old and families are left to figure out how to sending them to the principal frequently. Although students, it may not be surprising to learn that sur-
to address the needs of their autistic young people by the national organization Asperger/Autism Network veys show teachers rarely use evidence-based strate-
themselves. Another Board member said that in her (AANE) provides training to 120 public school teachers gies with autistic students in the classroom.125 Neither
viewpoint, struggles with autism really begin at age 22 per year on the topic of educating autistic youth, which is general education nor special education teachers are
years old—because, at least, prior to that age there are funded by the Massachusetts Department of Education, well-prepared via coursework for providing inclusive
opportunities to receive early intervention and school- the Advisory Board felt that this was too little and too education.126,127 In one study, only 15% of teachers re-
based services. In Massachusetts, the Department limited—teachers nationally need access to training ported any training on effective teaching strategies
of Developmental Services (DDS) offers an array of on autism and educating autistic youth. The Advisory for autistic youth from teacher preparation programs
services to autistic youth less than 18 years old, but the Board also suggested that secondary schools that have at colleges and universities, while the most common
service options change markedly once youth are older managed to develop model systems and practices for means of training (20%) were full- and half-day work-
than 18. Furthermore, in Massachusetts autistic youth educating autistic youth should be held up as examples shops.128 Teachers need training on evidence-based
and adults who develop a comorbidity of depression, of best practices. strategies that engage autistic students in academic
anxiety, or another form of mental illness must first work and accommodate their learning styles, sensory
students full access to the same curriculum while ac-
go through DDS before applying to the Department
commodating learning differences, and integration (9) Understanding learning styles and needs, and executive functioning deficits.
of Mental Health (DMH) for support services. This teaching approaches to improve autistic
refers to classroom settings in which autistic and neu-
process may deter autistic individuals and their families (10) Educating adolescents on the
from seeking support due to the many steps involved.
rotypical students learn side-by-side. The benefits of youths’ academic achievement
school inclusion may include reducing stigma about spectrum about autism and promoting
Advisory Board members suggested that attention autism, social skills development, autistic youths’ en- Special education enrollment for autistic students self-advocacy
to the transition process should begin as early as gagement in more academic tasks, and experience has increased markedly over the past two decades, and
middle school and receive full attention during the with class-wide strategies to address behavior and so- schools struggle to provide adequate programming for Understanding, accepting and feeling pride about au-
high school years. Autistic youth members of the cial issues.114 However, classroom inclusion may not these students.119 Students with autism are a hetero- tism (rather than shame, or exclusively negative feel-
Advisory Board who now live in dormitories and result in better social relationships for autistic youth, geneous population, each with a unique set of educa- ings) can make a difference in mental health, and possi-
apartments without family spoke about the need and can lead to isolation, teasing, and bullying.114,116 tional needs. This means that educational approaches bly other, outcomes. In general, healthy self-pride, also
for resources to help them navigate their emotions Teachers sometimes view autistic youth as disruptive that prove successful for some are not successful for called authentic pride, is associated with better emo-
during the process of gaining independence, and to and therefore undesirable in the classroom,117,118 and others.120,121 Despite this, national models designed to tional and social health.129 Research suggests that when
help them cope with the practicalities of daily life. too often there is insufficient funding for education guide teachers in best practices often prescribe a sin- youth think of ASD as a difference rather than a disad-
Importantly, the Advisory Board also talked about the assistants, reduced noise environments, appropriate
gle teaching method that has demonstrated efficacy for vantage, they may be more likely to feel pride, positive
importance of not only educating autistic youth and equipment or time to provide additional teaching help
subsets of autistic students (e.g., one-to-one discrete emotions, and cultivate coping strategies.130 However,
their families about the transition period or process, to autistic youth, inconsistencies in the use of strate-
trial training, pivotal response training, incidental not all parents inform their children that they are on

12 © 2021 © 2021 13
the autism spectrum, and when they do, the parents Additional topics TABLE 1. RCT-TESTED INTERVENTIONS
typically have had little support for talking with their
children about the autism diagnosis or about autism Additional topics in the priority list, ranked lower than Number of unique
the top ten priorities, included the following: teaching Topic RCT-tested interventions Names of tested interventions
in general.131 Moreover, research suggests that a sense identified
of connection with the autism community might boost life skills (i.e., skills for becoming and remaining em-
ployed, budgeting money); reducing anxiety and depres- 1 Sex and Sexual Health 1. Supporting Teens with Autism on 2. Tackling Teenage Training
feelings of well-being in autistic individuals.132 (inclusive of gender identity) 2 Relationships program (TTT) program
sion, with the note that autistic people do not automati-
Taken together, these findings suggest that an important
cally qualify for services through Departments of Mental
topic for new intervention and research may be wheth- Health and that transitions such as from middle to high 2 Body awareness, body image and --
0
er and how autistic youth are educated about autism, school might be particularly stressful; alcohol and other making healthy nutritional choices
provided with access to the autistic community, and are drug use; teaching hygiene; promoting exercise; limit- 3 Reducing loneliness and social isolation, 1. The PEERS Curriculum 6. Sensory Enrichment Therapy
encouraged to engage in self-advocacy. Advisory Board ing screen time and use of electronics; and addressing and increasing social connections For School-Based Professionals: 7. SENSE Theatre Intervention
members talked about the possibility of fostering con- every body system when caring for autistic youth includ- Social Skills Training For 8. Transitioning Together
ing but not limited to gastrointestinal problems, dental Adolescents With Autism 9. SOSTA-FRA
necting and community between older and younger au-
Spectrum Disorder 10. Reciprocal Imitation Training (RIT)
tistic youth so that older individuals who have overcome health, eyesight, and neurological issues. The Adviso-
2. Sociodramatic Affective Relational 11. KONTAKT
transition challenges or other hardships could provide ry Board wanted to emphasize that these topics were
16 Intervention (SDARI) 12. The ACCESS program
peer mentoring. Some Board members pointed to the important and should not be viewed as non-prioritized. 3. SkillsStreaming 13. Alvin model of ‘Free Improvisation’
“It Gets Better Project,” which was founded in 2010 to The reason that many did not make it into the top ten 4. Social Stories™ 14. The Superpower Glass intervention
most prioritized may be that they are not as pressing 5. Multimodal Anxiety and Social Skills 15. Social Tools And Rules for Teens (START)
support gay, lesbian, bisexual and transgender teenag-
during the transition age period but could become more Intervention (MASSI) program 16. Mind Reading (Computer Software)
ers who experience bullying, as an example of a project
urgent to address as youth grow older.
that could be adapted to support transition-age autistic
youth. One youth said that they felt disappointed that The Advisory Board emphasized the dramatic reduc-
tion in available services once youth became adults, 4 Reducing vulnerability to violence, 1. Peers engaged in effective relationships decision making (PEER-DM)
they did not really know much about their own autism 1
which depending upon the services is defined at either bullying, and exploitation
diagnosis, or autism as a neuro-difference, and there
18 years of age or 22 years old, despite the desperate
was agreement among autistic youth that it would be need for support during this time in the life course. 5 Workforce training for college
0
--
helpful if they had opportunities to learn more. Parent and university faculty
The Board believed that the paucity of services for
members of the Advisory Board wondered if education emerging adults represented a critical area of need, 6 Reducing suicide and self-harm 0 --
about autism for youth on the spectrum may prevent with preparation for transition needing to start during
7 Supporting autistic youth and families 1. BOOST-A™ transition planning 5. Virtual Reality Job Interview Training
bullying victimization. high school. during transition after high school program (VR-JIT)
2. COMPASS Project 6. JobTIPS:
3. The Interpersonal Problem- 7. Project SEARCH / Project SEARCH plus
10 Solving for Workplace Autism Spectrum Disorder Supports
Adaptation Programme 8. Interview skills curriculum (ISC)
4. INTERVENTION RESEARCH 4. Integrated Employment Success 9. McGill Transition Support Program
Tool (IEST™) 10. Transitioning Together

The leadership team undertook a scoping review of goal was to identify RCT-tested interventions that are
8 Improving secondary school inclusion 1. Accessible Literacy Learning 6. Autism Spectrum Social Stories In
the peer-reviewed literature in order to identify evi- effective for youth ages 11-24 years old and are ready and educational options Curriculum Schools Trial (ASSSIST)
dence-based interventions that had already been tested to be compared through a comparative effectiveness re- 2. Virtual reality driving simulation 7. Picture Exchange Communication
through RCTs and were therefore appropriate for CER search study. We also excluded studies if the target of training (VRDST) System (PECS)
which compares head-to-head the effects of two or more the intervention did not match our priority health topics. 8
3. PEGASUS 8. High-tech Speech Generating
interventions. For example, if our topic of interest was suicide, we did 4. TOBY play-pad application Device (SGD)
To be eligible for inclusion in our review, the interven- not include interventions that targeted depression but 5. Cogmed WMT
tion had to have been tested with youth ages 11-24 years did not address suicide and self-harm. In the resulting
old, and with one or more youth who were autistic. In list of interventions (see Table 1), we present the count 9 Understanding learning styles and --
some cases, we uncovered descriptions of interventions of RCT-tested interventions—but not the count of RCT teaching approaches to improve autistic
that seemed promising, but had not been RCT-tested. In studies. Some interventions, such as the UCLA Peers in- youths’ academic achievement 0
other cases, we uncovered interventions that were test- tervention, KONTAKT, and Social Stories™, for example,
ed with autistic adults, but not with autistic youth ages have been the subject of multiple RCT studies. We count
11-24 years old. We excluded these studies because our each of these interventions only once in our table below. 10 Educating adolescents on the spectrum 1. Pegasus
about autism and promoting self- 1
advocacy
14 © 2021 © 2021 15
© 2021 15
 The topics with the most RCT-tested interventions in- and Tackling Teenage Training (TTT) program. STAR is
cluded social skills interventions and interventions to a facilitator-led, 6 session in person intervention that in-
support autistic youth and families during the transition cludes a parent curriculum and an interactive computer
after high school. Interventions to reduce social isolation game for youth. TTT is also delivered by a professional,
such as the SENSE Theatre Intervention, and the Mul- over the course of 18 sessions.
timodal Anxiety and Social Skills Intervention includ-
Notably, the field lacks interventions for autistic transi-
ed building social skills and reducing anxiety through
different methods such as artistic expression. Interven- tion-age youth on the topics of eating disorders, healthy
tions to support transitions after high school included eating, positive body image and nutrition. Further, the
two formal transition planning programs and sever- field lacks RCT-tested interventions on reducing bully-
al job readiness and vocation-oriented interventions. ing victimization, reducing suicide and self-harm, ex-
There were also numerous interventions designed to panding the capacity of college and university faculty
improve how autistic youth learn in school and outside to educate autistic youth, understanding the learning
of school, including virtual reality driving simulations, styles of autistic youth, and educating autistic youth
phonics and language programs, memory training, and about autism and promoting self-advocacy. Given that
using social stories. Two interventions existed on sex, these were topics prioritized by the Advisory Board and
sexuality and sexual health including the Supporting are topics for which few RCT-tested interventions exist,
the parents (i.e., late elementary school/early middle Advisory Board members discussed the importance of
Teens with Autism on Relationships (STAR) program they are particularly important topics for new research. school). In general, the Advisory Board believed that not only measuring the impact of interventions on health
parents should be involved in interventions about key outcomes, but also assessing more proximal measures
priority topics such as body image. The role of parents such as establishing friendships, building self-esteem,
5. RECRUITMENT, INTERVENTION DESIGN was less clear for sexual health interventions, with some and developing coping skills. Reporting on mood—in-
Advisory Board members believing that parents were cluding irritability and loneliness—was also considered
AND OUTCOMES MEASUREMENT an important source of support, and others feeling less important for some intervention research. Board mem-
comfortable with active participation in sex and sexuali- bers advised that measures should examine positive
ty-related interventions. School was considered an opti- health outcomes as well as negative ones. Survey-based
The Advisory Board made a number of recommenda- well as contribute to science. Advisory Board members measures should be brief, specific and concrete to al-
mal location to deliver interventions, as it allows autistic
tions about optimal ways to recruit autistic youth into both cautioned that remuneration that was too high low them to be more accessible to youth with a range of
and neurotypical peers to learn together, and may be
research studies as participants. The group suggested should be avoided, as it could be coercive, raise con- abilities. One autistic Advisory Board member suggested
more accessible to all youth regardless of socioeconom-
advertising through existing autism advocacy groups cerns about the “invasive” nature of the study, or might that breaking down constructs into “smaller pieces” that
ic status than private-pay interventions at community
and networks, schools, and medical centers. Study ad- also sound “too good to be true” to prospective partici- are assessed via separate survey questions would reduce
mental health centers or other agencies. Members of the
vertisements should include pictures of people that ad- pants, but that remuneration too low would be unjust.
board did note that intervention providers need to be at- burden on autistic survey respondents. Inclusion of both
equately represent diversity across many different iden- Most Advisory Board members did not feel that recruit-
tuned to the issue of bullying, and ensure that interven- closed- and open-ended responses may allow the collec-
tities including women and Black, Indigenous and other ing through social media (e.g., Facebook, Instagram,
tions were delivered in a safe and supportive manner tion of richer data. However, Advisory Board members
people of color (BIPOC). Basic information about the Twitter) would be effective because they personally are
for all adolescents and young adults. All interventions also stressed the importance of qualitative research. A
study should be presented in an easy-to-read format. It not active on social media (though of note the project
should be designed and implemented with cultural hu- high priority should be placed on capturing lived experi-
should be clear that the study is seeking to recruit autis- leadership has done successful recruitment using these
mility and a recognition of intersecting identities and ence, mining wisdom acquired from real-life experienc-
tic youth from recruitment materials. If needed, specifics methods). With regard to consent, the Advisory Board
their impact on health and well-being. es, and “telling our story.”
about whether the study is open to youth with intellec- suggested that study investigators list the requirements
tual disability, or those who are verbal and non-verbal, of the study several times, and emphasize that people
should be provided. have the option not to participate.
Advisory Board members enumerated multiple ways The Advisory Board also discussed a number of con-
in which it can be beneficial to participate in research. siderations related to intervention design including the
These include the opportunity to enrich their sense of optimal target age of participants, the degree to which
identity, develop autistic self-advocacy skills, a chance parents should be involved and the best mode of inter-
to “see change in the world,” and in some cases such as vention delivery. The Advisory Board emphasized the
community-based participatory research, the chance to need for social skills and body image interventions to
make new social connections. One participant said that be introduced earlier in childhood (i.e., elementary
she participated in research because she hoped to help school), but emphasized that these interventions should
generate information that would be useful to other fam- continue throughout adolescence. The Board recom-
ilies of autistic children, so that they had information mended that sexual health interventions be delivered
that would have been helpful to her when her own child somewhat later (i.e., middle school or high school); of
was young. Participation in some autism research may note, the youth and service providers favored introduc-
include the opportunity to meet peers in a safe space as ing sexual health interventions somewhat earlier than

16 © 2021 © 2021 17
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