Journal of Autism and Developmental Disorders

https://doi.org/10.1007/s10803-020-04743-6

ORIGINAL PAPER

Characterization of Special Interests in Autism Spectrum Disorder:

A Brief Review and Pilot Study Using the Special Interests Survey
Kerri P. Nowell1   · Courtney J. Bernardin2 · Cynthia Brown2,3 · Stephen Kanne1

Accepted: 28 September 2020

© Springer Science+Business Media, LLC, part of Springer Nature 2020

Abstract
Special interests (SIs) are part of the diagnostic criteria for autism spectrum disorder (ASD). Though they can have both
positive and negative effects on functioning and long-term outcomes, research on SIs is limited. This pilot study used a
newly developed parent-report measure, the Special Interest Survey, to characterize SIs in 1992 children with ASD. The
mean number of current special interests reported was 9, with television, objects, and music being most commonly endorsed
interests. The mean age of onset reported across all categories was 5.24 years, with duration of past interests most often
exceeding 2 years. Age of onset, interference, and relative unusualness of the SI was varied across categories. Interference
was significantly correlated with the unusualness of the SIs.

Keywords  Special interests · Circumscribed interests · Autism

Circumscribed interests, unusual preoccupations, and atyp-
ical attachment to objects are subsumed under the broad
autism spectrum disorder (ASD) diagnostic domain of
“restricted and repetitive behaviors” (RRBs). These symp-
toms are notable for the narrowness of an individual’s
focus, inflexibility, and perseveration on objects or topics
(Leekham et  al. 2011). Circumscribed interests refer to
atypically intense and restricted interests in specific types
of objects or topics. Though the content of a circumscribed
interest is developmentally appropriate (e.g., extensive
knowledge of Star Wars in an 8-year-old child), they are dis-
tinguished from interests seen in the neurotypical population
by their nature, content, and resulting functional impairment
Electronic supplementary material  The online version of this
article (https​://doi.org/10.1007/s1080​3-020-04743​-6) contains
supplementary material, which is available to authorized users.
(American Psychiatric Association 2013). In contrast, an
unusual preoccupation refers to an intense interest in an
object or topic that is unexpected for an individual’s age
or developmental level or unusual in nature (e.g., a five-
year-old child with an encyclopedic knowledge of elevators;
Smith et al. 2009). Atypical attachment to objects refers to
the need to carry around or be otherwise intensely attached
to specific or odd objects (e.g., a milk carton, kitchen uten-
sil; Lam et al. 2008). All three behavioral symptoms fall
under the same diagnostic criteria listed in the Diagnostic
and Statistical Manual of Mental Disorders (i.e., B3: highly
restricted, fixated interests that are abnormal in intensity or
focus; American Psychiatric Association, 2013). For the pur-
pose of this paper, these will be collectively referred to as
special interests (SIs), though each has subtle but important
associated differences.

* Kerri P. Nowell Special Interests in Neurotypical Children

nowellk@health.missouri.edu
Compared to Children with ASD
1
Department of Health Psychology, Thompson Center
for Autism and Neurodevelopmental Disorder, University Focused interests (i.e., interests that are narrow in scope and
of Missouri, 205 Portland Street, Columbia, MO 65201, content) are relatively common among neurotypical (NT)
USA
children. Indeed, approximately 30% of NT preschool aged
2
Department of Psychological Sciences, University children are described as having specific interests in topics
of Missouri, Columbia, MO, USA
such as trains and animals (Alexander et al. 2008; Anthony
3
Present Address: Department of Psychological Sciences, et al. 2013; DeLoache et al. 2007; McHale et al. 2001). For
Stony Brook University, Stony Brook, NY, USA

13
Vol.:(0123456789)

NT children, prevalence of focused interests peaks in the
preschool years and becomes less common/intense with the
onset of formal schooling (DeLoache et al. 2007). Even at
the developmental peak, the prevalence of intense interests
(i.e., SIs) is not as high in NT preschoolers as is seen in
preschoolers with ASD with prevalence estimated to be
between 65 and 88% (Klin et al. 2007; Turner-Brown et al.
2011). In contrast to NT youth, high numbers of SIs persist
in individuals with ASD. Over the course of the lifespan,
estimates of SIs in individuals with ASD are between 49
and 88% depending on how SIs are defined within the study
(i.e., if circumscribed interests, unusual preoccupations,
or attachments are collapsed or considered independently;
Grove et al. 2018; Klin et al. 2007; Szatmari et al 2006;
Turner-Brown et al. 2011).
Interests in NT children are distinguished from SIs among
youths with ASD by the intensity of the interest, the type of
interest, and inflexibility around the interest (Anthony et al.
2013; Turner-Brown et al. 2011). Sometimes referred to as
monotropism (Wood 2019), the tendency to focus intently on
a limited range of topics appears to be highly indicative of
ASD; researchers have been able to correctly classify 77.5%
of individuals as either NT or having ASD using a meas-
ure of interest intensity (Anthony et al. 2013; Murray 2018;
Murray et al. 2005; Wood 2019). SIs in children with ASD
can also be distinguished from interests and hobbies in NT
children by the type of interest and the degree of inflexibility
around the interests (Turner-Brown et al. 2011). For exam-
ple, while an interest in Pokémon may not be unexpected in
a NT 8-year-old, an interest in the make and model of eleva-
tors would be surprising. Similarly, the same NT 8-year-old
who enjoys Pokémon would likely have other interests, be
able to engage in conversation with peers around other top-
ics, and understand when it would be appropriate to spend
time discussing Pokémon. This stands in contrast to the
8-year-old with ASD with a similar interest in Pokémon,
who would likely be much less flexible in how they engaged
with peers around Pokémon (Turner-Brown et al. 2011).
Advantages and Disadvantages of SIs
Focused interests are described as having positive outcomes
for NT children. In fact, a particular interest may facilitate
the development of expertise and rich knowledge, and could
promote learning by motivating a child to collect information
through books and other avenues. This, and other positive
outcomes, could also be expected in individuals with ASD.
Indeed, the tendency to focus on specific topics or aspects
of the environment (i.e., SIs) may be a manifestation of per-
ceptual differences that contribute to intellectual functioning
to a greater degree than in NT individuals (Mottron 2017).
There are other advantages to SIs in individuals with ASD,
13
Journal of Autism and Developmental Disorders
such as providing opportunities for social interaction and con-
nectiveness around shared interests, and promoting well-being
(Grove et al. 2018; Klin et al. 2007; Koenig and Williams
2017). Some research suggests that SIs may help individuals
with ASD make sense of the social world by applying the same
methods of learning about SIs to learning about social interac-
tions (Klin et al. 2007). Individuals with ASD self-report that
SIs often facilitate social interactions with others with similar
interests, generate positive emotions and coping strategies,
provide a skill base for later employment, and induce a sense
of pride and general well-being (Grove et al. 2018; Jordan
and Caldwell-Harris 2012; Koenig and Williams 2017; Mer-
cier et al. 2000; Teti et al. 2016; Stratis and LeCavalier 2013;
Trembath et al. 2012; Winter-Messiers 2007). In a sample of
adults with ASD, the majority (96.2%) surveyed felt that SIs
should be encouraged in children and that their own SIs had
facilitated positive outcomes in their own lives (Koenig and
Williams 2017).
SIs can also be tapped as powerful motivators/reinforcers
and incorporated into intervention (Harrop et al. 2019). For
example, although socialization may not be a natural reinforcer
for individuals with ASD, incorporating a SI may provide the
reinforcement needed and increase time spent in social inter-
actions (Boyd et al. 2007b, a). Focusing on a person’s SIs can
lead to increased participation in a broad range of school-based
activities and SIs have been used in classrooms to motivate
students to engage in academic tasks that would otherwise be
aversive (Charlop-Christy and Haymes 1996; Wood 2019).
However, SIs also contribute to difficulties in daily func-
tioning and socialization, and may interfere with interactions
with others (Gabriels et al. 2005). Individuals with ASD attend
more to items that are frequently topics of SIs than to items of
a social nature (Sasson et al. 2008). If a SI is extremely intense
or atypical, it may be socially isolating. Extremely intense and
atypical SIs have been associated with greater difficulties with
social reciprocity and social communication in later develop-
ment (Anthony et al. 2013; Klin et al. 2007). SIs may also con-
tribute to significant family stress, interfere with other aspects
of daily living or restrict the development of a wider range of
interests (Bishop et al. 2006; Klin et al. 2007; Turner-Brown
et al. 2011). However, given what we know to date, particu-
larly the increased recognition of the positive aspects of SIs,
furthering our understanding of SIs can inform therapeutic
intervention and influence long term outcomes for individuals
with ASD. Despite the potential positive and negative impact
of SIs, research in this area is limited.
Characteristics of SIs in ASD
Baron-Cohen and Wheelwright (1999) proposed a taxonomy
of SIs in individuals with ASD based on the theory that indi-
viduals with ASD have intact understanding of folk physics
Journal of Autism and Developmental Disorders
(i.e., how objects in the world work/relate) but deficits in
folk psychology (i.e. how the social world works). Indeed,
extant (but limited) research supports this theory, because
it appears that SIs in “high functioning youth” (i.e., intact
language and cognitive abilities) with ASD may be less
likely to be categorized as “social” (Anthony et al. 2013;
Cho et al. 2017; Turner-Brown et al. 2011). SIs are more
likely to be related to gathering factual information, playing
games alone, collecting/hoarding, cartoons, being attached
to a particular object or item, and sensory seeking activities
(Klin et al. 2007). However, research findings are somewhat
equivocal in that adolescents with ASD also have many typi-
cally adolescent interests (Cho et al. 2017).
Correlates to SIs
Research investigating focused interests in NT children sug-
gests that highly verbal boys are the most likely children
to have strong interests during childhood. As noted, while
focused interests are relatively common in NT preschool
children, they only persist in a small proportion of school
age children (Alexander et al. 2008). Few studies have exam-
ined the expression of SIs in ASD; however, of the existing
research, expression of SIs may also be related to gender,
age, and cognitive functioning (Anthony et al. 2013; Cho
et al. 2017).
Research examining changes in SI with age in individuals
with ASD is inconsistent. There is evidence of a decline in
the number of SIs with age as well as changes in the types
and intensity of SIs (Baron-Cohen and Wheelwright 1999;
Shattuck et al. 2007; South et al. 2005). It is unclear how
intensity changes over time with some indications that inten-
sity of SIs increases with age (South et al. 2005). However,
age effects have not been consistently replicated (Anthony
et al. 2013; Cho et al. 2017). For example, Cho et al. (2017)
did not find an age effect in the types of SIs in their sample
of adolescents but also noted that, as a whole, their ASD
adolescent sample did not endorse many of the stereotypi-
cal ASD interests such as trains. It is plausible that differ-
ences between results from existing studies reflect reliance
on relatively small sample sizes. A notable gap in the current
research is how long any particular SI lasts. It is unclear
if particular types of SIs are more likely to endure into
older adolescence and whether those SIs are as function-
ally impairing as SIs that are commonly present in younger
children.
Measurement of SIs
Although there are several well-validated measures of
RRBs broadly, there is not a widely accepted measure
of SIs. Therefore, research studies have used the Autism
Diagnostic Interview-Revised (ADI-R; Rutter et al. 2003),
Autism Diagnostic Observation Schedule, Second Edition
(ADOS-2; Lord et al. 2012), and other rating scales specific
to RRBs to assess SIs. Diagnostic instruments such as the
ADI-R and ADOS-2 are limited by a small number of items
or limited observation period thus may not adequately assess
the content, intensity, or longevity of interests. The method
of ascertainment of SIs varies across these measures with
some depending on clinician observation within a limited
interaction and others dependent upon a parent report. For
example, the ADOS-2 provides a relatively short observation
period whereby RRBs in general are less likely to be directly
observed, and the use of the ADI-R is limited because clini-
cians may only write down enough to use for coding pur-
poses and not record all possible SIs. One could argue, given
the nature of SIs (i.e., may not be observed during a brief
interaction), that parent report is especially important to
understand the expression of SIs across time and contexts.
More focused studies have utilized measures specifically
designed to assess SIs rather than the broader category of
RRBs. For example, the Cambridge University Obsessions
Questionnaire, used by Baron-Cohen and Wheelwright
(1999), asked parents to endorse the presence of intense
interests in 19 categories that were “chosen to cover the full
range of objects and activities” (Baron-Cohen and Wheel-
wright, pp. 484–485). The authors then re-coded the results
into 15 categories, with six cognitive domains, eight areas
of everyday life, and one sensory domain. This work led
to the taxonomies of “folk physics” and “folk psychology.”
The Yale Survey of Special Interests (Klin et al. 2007) used
open-ended questions via parent report about the top three
interests that the individual with ASD displayed and also
assessed the level of interference of those interests when
a child was alone or in a social situation. Responses were
coded into eight descriptive categories intended to capture
the nature of the interest, such as facts/verbal memory and
learning, or classifying/ordering information. Turner-Brown
et al. (2011) used the Interest Scale developed by Bodfish
(2003), which includes a 39-item checklist describing typi-
cal childhood interests and asks the parent or caregiver to
rate each area assessing if the child spends time on the item.
The parent or caregiver is then asked several additional ques-
tions about the three primary interests including how intense
the interests are, how much they interfere with social inter-
actions and the need for accommodation. This study also
used the Interview for Repetitive Behavior (Bodfish 2003),
a structured clinical interview that seeks additional informa-
tion about items endorsed on the Repetitive Behavior Scale
– Revised (RBS-R; Bodfish et al. 2000), a subset of which
targets circumscribed interests. Though the RBS-R is a par-
ent-report measure, it is limited in terms of the scope of SIs
assessed. The Interview for Repetitive Behavior asks how
often a behavior occurs, if the child becomes “distressed”, if
13

the behavior causes problems, and is the caregivers accom-
modate the behavior.
Characterization and measurement of SIs in individuals
with ASD is complex. Due to the potential for an infinite
number of SIs researchers often begin with some type of
taxonomy to collect data in this area. For example, Alexan-
der et al (2008) created collapsed categories based on related
interests (e.g., conceptual: dinosaurs, airplanes, horses; soci-
odramatic: pretend play and adventure play; constructive/
building: Legos/blocks). Alternatively, other measures (e.g.,
Yale Survey of Special Interests; Klin et al. 2007) ask about
the individual with ASD’s primary SIs (i.e., the top three).
However, by creating a priori categories or only evaluating
what a caregiver perceives to be their child’s primary SIs
there is the potential to not fully capture the breadth of SIs.
Purpose
SIs appear to be highly indicative of ASD and occur in a
majority of individuals with ASD, consistent with their
inclusion as a diagnostic criterion. SIs have the potential for
positive and negative effects on functioning and long-term
outcomes, but focused research on SIs is limited. Further,
given the variability in SIs, existing research is also limited
by relatively small sample sizes and, in some instances, use
of measures not specifically designed to fully capture all
aspects of SIs. In particular, there is no existing measure that
comprehensively assesses the intensity, longevity, atypical-
ity, and perceived interference of SIs in individuals with
ASD. Given the high occurrence and impact on individual
functioning—both positive and negative—it is important
for professionals in the field to have a richer understanding
of SI expression. A comprehensive understanding of SIs in
ASD has the potential to better understand the heterogene-
ous ASD phenotype, to improve diagnostic practices and to
inform recommendations for intervention.
The aim of this pilot study was to build on existing
research and characterize SIs in a large sample of youth with
ASD using a newly developed measure, the Special Interest
Survey. The measure, based on prior similar measures (i.e.,
Bodfish 2003), was designed by incorporating data collected
from parent interviews with previously developed meas-
ures of SIs in an attempt to comprehensively characterize
caregiver-perceived SIs across a broad range of categories.
The Special Interest Survey includes measures of atypicality
and interference, and further addressed gaps in the current
research by including measures of longevity.
This exploratory pilot study addressed the following
questions: What types of SIs do caregivers most frequently
endorse and how many categories of SIs do parents endorse
for their child with ASD? What is the impact of SIs on their
child’s functioning, and are there differences in perceived
13
Journal of Autism and Developmental Disorders
intensity and interference across SIs? Do types of SIs differ
by age and how long do most SIs last?
Methods
Participants
Parents of 1992 children (78.5% male, M age = 9.1 years
[SD = 4.15]) who were enrolled in the Simons Founda-
tion Powering Autism Research for Knowledge (SPARK)
Project, completed an online survey regarding their child’s
SIs. SPARK is a large-scale, multi-site genetic phenotyping
project devoted to families who have a child with ASD (Feli-
ciano, et al. 2018). SPARK participants are either self- or
parent-registered and have received a diagnosis of ASD from
a qualified professional. Though an ASD diagnosis is not
verified prior to inclusion in SPARK research using similar
ASD registries (e.g., Interactive Autism Network; Daniels
et al. 2012; Lee et al. 2010) have demonstrated good validity
with parent-report and professional diagnosis history.
An electronic invitation with information about the study
(i.e., study name and purpose; approximate time commit-
ment) was sent to families registered with SPARK who met
inclusion criterion (i.e., caregivers with a child between the
ages of zero and 18). Caregivers were also informed that
they would be eligible to enter into a drawing for one of fifty,
$20 Amazon gift card following completion of the survey.
The invitation contained an electronic link that caregivers
could select if they were interested in participation. Only
individuals specifically invited by SPARK received a unique
electronic link. This study was approved by the University
of Missouri Institutional Review Board and caregivers sup-
plied electronic informed consent prior to completing the
survey. Demographic data extracted for the purposes of the
current study included age of the child (i.e., participant),
child’s gender, child’s race/ethnicity, and age of caregiver
(i.e., respondent). The resulting sample consisted of 1921
completed surveys on individuals between the ages of 2.10
and 17.80 years (M = 9.07; SD = 4.15; 79.9% male). The
majority (90.7%) of respondents identified as White. There
was no difference in mean age between males and females
(t [1919] = 0.14, p = 0.89). Demographic data are presented
in Table 1.
Special Interest Survey
SIs were assessed using parent report on the 31-item Spe-
cial Interest Survey (SIS). The SIS is a newly developed
parent-report survey that assesses the history (i.e., age of
onset and duration) of circumscribed interests and unusual
preoccupations (“special interest”), the “unusualness” of the
interest (i.e., uniqueness of the interest relative to interests of
Journal of Autism and Developmental Disorders

Table 1  Demographic characteristics of participants addition, examples and descriptions from pre-existing items
Variable
on the Interest Scale were updated based on data from the
qualitative analyses (e.g., adding “YouTube” as an example
Age in years of TV/Movie Watching). Nodes that had a low endorsement
Mean (SD) 9.07 (4.15) rate (i.e., endorsed by less than 2% of the sample) were not
Range 2.10–17.80 included as new items.
Gender % (n) Researchers commonly report sex differences in a wide
Male 79.9 (1534) range of characteristics in males and females with ASD (e.g.,
Female 20.1 (387) repetitive and stereotyped behaviors, Mandy et al. 2012;
Race/ethnicity % (n) social behavior, Head et al. 2014; Lai et al. 2011; internal-
White 90.7 (1743) izing problems, Oswald et al. 2016). Differences by sex have
Hispanic 314 (16.3) also been noted in SIs, and changes were made to the items
African-American 8.6 (166) retained from the Interest Scale in light of this research.
Other 5.3 (102) First, examples were added to several categories to better
Asian 4.2 (81) represent interests that are commonly reported by females
Native American 0.9 (18) with ASD (see Table 2 for a summary of these items). For
example, it has been suggested that girls and women with
ASD may show interests involving animals rather than
peers), and how that interest interferes with the individual’s objects or things, which are commonly seen in boys and
daily life. men with autism (Lai and Baron-Cohen 2015). This was
The SIS was based on the Interest Scale (Bodfish 2003) a particularly important change to the measure, as it has
and data derived from a sample of parents (N = 211) who been suggested that SIs in females may go unnoticed more
completed the Autism Diagnostic Interview-Revised (ADI- easily due to their nature. For example, an SI in dolls may
R; Lord et al. 1994) at an academic medical center as part be overlooked and interpreted as pretend play. Thus, adding
of the Simons Simplex Collection (SSC). Specifically, the the examples to categories may serve to prompt caregivers
responses on questions 67 through 79 on the ADI-R were to recognize the SI. Next, the category of “factual informa-
transcribed electronically and analyzed using the qualitative tion” on the Interest Scale was replaced with two new items:
data analysis program, NVivo (Pazeley and Jackson 2013). “factual information about things,” and “factual information
First, phrases and words related to individual interests were about people.” This was done in response to research sug-
extracted from the transcript of the ADI-R items (e.g., “is gesting that boys tend to be more interested than girls in col-
really interested in fish,” and “loves watching Disney mov- lecting facts about non-social events and activities, whereas
ies”). Then, the extracted words and phrases were coded girls are more interested than boys in collecting facts about
into categories of common interests (e.g., animals for “is people (Gould and Ashton-Smith 2011).
really interested in fish” and TV for “loves watching Dis- The final version of the SIS includes 31 categories of
ney movies”). The extracted text was then re-coded using a SIs (e.g., animals, vehicles and transportation) with a gen-
final list of nodes by two research assistants. Agreement on eral description of the category and examples of SIs that
categorization was high (i.e., over 95%); disagreements on fit within that category. For example, the SI category of
categorization were discussed and resolved via consensus. “Machines, how things work” is described as: “interested
The final list of nodes was then compared with items on in taking things apart, assembling things, reading/study-
the Interest Scale. New categories not previously captured by ing/discussing how things work, fascination with particu-
the Interest Scale were included as new items on the SIS. In lar machines or gadgets Examples: elevator mechanics, car

Table 2  Summary of revisions made to existing categories to include common female interests

Category Existing examples Added examples Supporting evidence for additions

Animals Insects, dinosaurs, marine wildlife Horses, cats, dogs Lai and Baron-Cohen (2016), Van Wijngaarden-
Cremers et al. (2014), Vine Foggo and Web-
ster (2017), Williams (2016)
Music Watching YouTube videos, listening to music on Dancing, learning dances Sutherland et al. (2017)
iPod or MP3 player, knowing facts about bands
and singers
Toys Collecting models of a particular action figure, Barbies, dolls, animal figurines DeLoache et al. (2007), Hiller et al. (2014)
collecting toy cars

13

engines, hydraulics”. Caregivers are asked to review the
category and indicate if their child has an interest in that
category. The following language is used to define an inter-
est: “By interest, we mean things that your child spends time
doing or that s/he tends to focus on”. When a caregiver indi-
cates that their child has an SI, either currently or in the past,
in any category they are prompted to describe the specific SI
(e.g., cats, dump trucks) in an open-text box. At the end of
the SIS, caregivers are given an option to list any interests
that did not fit into the categories included in the measure.
If a participant endorses an interest, they are redirected to
answer the following items: (1) whether or not the SI is cur-
rent, (2) the age the SI began (3) how unusual or unique they
find the SI (i.e., “Compared to other youth your child’s age,
what is the degree to which you find this interest unusual or
unique?”), (4) how much they perceive the SI to interfere
with daily life (i.e., “How much does your child’s interest
interfere with daily life? [e.g., annoying others by talking
about the interest, being unable to disengage from the activi-
ties or materials related to the interest]”). If the SI is no
longer present, the caregiver is asked how long the SI lasted.
A Likert scale (1 to 5) is used to rate how unusual/unique
the SI is (1 = not unusual, 2 = slightly unusual, 3 = somewhat
unusual, 4 = very unusual, 5 = extremely unusual) and how
the SI interference (1 = doesn’t interfere, 2 = rarely inter-
feres, 3 = interferes occasionally, 4 = interferes regularly,
5 = interferes very often). Duration of SIs that are no longer
current is assessed using the following ordinal scale: 1 = less
than six months; 2 = six to 11 months; 3 = one to two years;
4: more than two years. The SIS is available via the cor-
responding author.
Data Analysis
Data were analyzed at the SIS category level and overall.
Variables of interest from the SIS were as follows: number
of current SIs, types of SIs, how unusual/unique caregivers
perceived their child’s SI to be, how much the SI interfered,
and how long SIs had lasted that were no longer current.
Descriptive statistics (i.e., mean, mode, standard deviation,
percentage) were used to describe demographics of partici-
pants. Frequency counts were used to describe the types of
SI categories endorsed by caregivers both currently and in
the past. Mean ratings of the uniqueness and interference for
SIs were graphically compared across categories.. Nonpara-
metric (spearman rho) tests were used to evaluation correla-
tions between age, number of current interests, how unusual/
unique caregivers perceived their child’s interest to be and
how much the SI interfered.. To assess how long prior SIs
lasted, we examined the variable “How long did [Partici-
pant’s] interest last?” for each SI category. Using frequency
counts, the mode was calculated for each category. The total
number of categories with that mode was calculated.
13
Journal of Autism and Developmental Disorders
Results
The majority of caregivers (99.7%) endorsed at least one
SI and 98.6% endorsed more than one SI over the course
of their child’s life. The highest number of SI categories
endorsed, both ongoing and in the past, was 29 with caregiv-
ers reporting a mean number of nine interests (SD = 4.45).
Of the sample, five individuals had zero SIs (see Table 3).
The number of lifetime interests (i.e., SIs in the past or
ongoing), was weakly correlated with age (r [1921] = 0.13;
p = 0.000).
For the number of current interests (i.e., SIs that were
ongoing), the majority of caregivers (97.5%) reported that
their child currently had more than one SI. The highest num-
ber of current SIs caregivers endorsed was 28 with a mean of
eight SIs (SD = 4.45). The number of current SIs endorsed
was not correlated with age (r [1921] = 0.02; p = 0.29). The
most frequently endorsed SIS categories were television,
objects, music, toys, and collections. Categories with the
fewest endorsements included, psychology, politics, physics,
and history. Table 4 includes proportions for all categories
with examples provided by caregivers.
Overall, caregiver responses on the item asking how unu-
sual/unique their child’s SI was resulted in a mean rating
of 2.71 (SD = 0.87; range 1–5). Responses on the item ask-
ing how much their child’s SI interfered resulted in a mean
rating of 2.37 (SD = 0.86; range 1–5). Across all catego-
ries, caregivers reported a mean age of onset of 5.24 years
(SD = 2.18; range 1–5). See Table 3.
How unusual/unique caregivers considered their child’s
SI varied by category. Several SI categories were rated as
at least being somewhat unusual (i.e., ≥ 3.0) including time,
people, schedules, numbers, objects, and things. In contrast,
the mean rating of unusual/unique in the SI category of
sports was rated as 1.88 (SD = 1.14). Mean interference also
varied by SI category with the most interference reported
for the SI categories of schedules, objects, and television
(mean interference > 3.0 for all these categories). The lowest
mean interference was found with astronomy, plants, sports,
religion, measurement and history (mean interference < 2.0
Table 3  Sample means across key variables across all SI categories
Variable Mean Standard devia- Range
tion
Endorsed total SIs 9.32 4.45 0–28
Endorsed current SI 8.40 4.31 0–28
Unusual/unique 2.71 0.87 1–5
Interference 2.37 0.86 1–5
Age of onset (years) 5.24 2.18 0–16
SI special interest
Journal of Autism and Developmental Disorders

Table 4  Proportions of special interest categories endorsed with examples of caregivers’ responses

Category % (n) Examples provided by caregivers

TV 81.1 (1557) Stock car racing videos on YouTube; Frozen movie over and over
YouTube videos about kids opening/playing with toys
Trains, videos of other kids playing or opening stuff
Objects 72.3 (1389) Sheriff Woody and one particular Lightning McQueen Car
Has always carried around an item (ball, then flashlight, then a spoon)
Certain things she is attached to, when taken away she has a fit
Music 67.1 (1289) Plays music all the time, he can remember words to almost every song
Likes to listen to rock or heavy rock
Likes to play violin and listen to Spotify
Toys 58.8 (1130) Cars and sea animals
Star Wars
My Little Pony, Littlest Pet Shop, Shopkins
Collections 53.1 (1021) Yu-Gi-Oh and Pokémon cards
As many trains as he could find
Rocks. I have rocks everywhere
Animals 50.2 (965) Likes dangerous and aquatic animals, especially sharks
Always interested in making animal sounds, especially farm animals. Wolves, horses, dolphins, and racoons
Construction 46.0 (884) Tens of thousands of Legos and is constantly building
An intense love for Legos and following Lego instructions
He likes makerspace and Legos, it makes sense to him
Transportation 45.3 (871) Everything is a firetruck, cop car or train. He can distinguish between the siren noises and imitates them perfectly
Cars, he learns everything he can. Watches YouTube nonstop about cars
Ocean liners
Art 43.0 (826) Modeling clay and kinetic sand
Loves to draw and can draw from memory
Pictures of animals she likes
Machines 42.6 (819) See things turn and the texture
He’s interested in cars/trucks and how they are made, what causes them to move
He takes apart toys. He likes to be on an elevator and push buttons
Mechanical 41.6 (799) Endless questions about how things work
Watches videos about how things work
Likes to discuss how things go down the drain into the sewer
Things 38.9 (748) Active with facts and rewriting things down he reads
Knows anything from music to history, loves to quiz people
Interest in the fonts that things use along with aspects of logos and designs
Numbers 29.8 (572) Obsessed with license plates
Likes puzzles and games with numbers
Counting, talking about numbers, reciting odd/even numbers
Reading 29.7 (570) Only Rick Right books about Greek heroes and gods
Loves reading and sometimes writing
Wrote books about herself and friends, animals, facts about animals; hyperlexic at age two
Math 25.3 (486) Loves the calculator on his iPad and has self-taught multiplication and division
Counts a lot of things whatever he is doing
Likes to add or multiply numbers
Time 22.7 (437) Needs to know what time it is all the time
Setting timers for every activity
Has a watch and he is very attuned to the time, duration of events etc
Maps 20.6 (395) Looking at map when in car, always having navigation system on to display
Memorizes every route of her daily routine
Google maps, memorizing locations
Astronomy 19.7 (378) Stars, moon, and the sun
Reading books or watching shows about the solar system
Understanding outer space, the planets and stars
Geology 18.1 (348) Loves geodes especially, the crystals inside them
Loves facts, tries to collect rocks, tells you how earthquakes work Wants to watch stuff about volcanoes and
earthquakes

13
 Journal of Autism and Developmental Disorders

Table 4  (continued)
Category % (n) Examples provided by caregivers

Computers 16.6 (319) Likes computers mostly for the drawing apps and video games; digital art mostly
Very interested in coding and wants to be an engineer;
Interested in the working of computers and how they are inputted
People 15.7 (301) Currently, Alexander Hamilton
Obsessed with YouTubers
People who created his favorite cartoons
Dates 12.9 (247) Likes to know what day of the week it is and what month and what we do on what day or month
Obsessed with calendars
Birthdates from the past
Sports 12.0 (231) Wants to watch and play
Basketball, bowling, golf. He plays them all but is very good with bowling. Also watches them on TV and You-
Tube
Measurement 11.2 (215) Enjoys units of measure in general but she enjoys baking because she is able to measure ingredients
Walks around for hours measuring things with his measuring tape
Tape measures, he loves them
Plants 10.8 (208) Loves to garden
Likes to plant anything to see if it will grow. He knows the basics and will share his information to anyone that
will listen
Curious about plants and gardens
Religion 10.5 (202) Wanted to know about world religions other than our own and would question their beliefs and why believed
especially if it is not able to be proven, seen, logical
Strong desire to understand God
Listening to bible stories, memorizing bible verses
Schedules 10.2 (195 Worried that she’ll get somewhere on time
Times to drop off and pick up from school
She likes to make a schedule of her day
History 9.4 (181) Anything he hears/learns about history he retains
Likes watching the history channel
He knows all about the Titanic
Physics 6.8 (130) How things work, what things are made of, the particles and how they’re put together
Building molecules from base elements
He knows so much about physics that I can’t even comprehend some of the things he talks about
Politics 6.1 (118) *
Psychology 3.7 (71) *

Proportions presented in descending order

*No examples provided

for all these categories). Ratings by category are included
in Fig. 1.
There were differences in age of onset depending on the
type of interest. The earliest mean age of onset was for the
SI categories of transportation (M = 3.98 years; SD = 2.44),
objects (M = 4.09  years; SD = 2.60), and mechani-
cal (M = 4.13 years; SD = 2.22). The oldest mean age of
onset was for the SI categories of people (M = 8.05 years;
SD = 3.52), history (M = 8.46 years; SD = 3.20), and politics
(M = 10.74 years; SD = 3.61). Mean rating of unique/unusual
and interference, by age of onset is depicted in Fig. 1.
Interference was strongly correlated with how unu-
sual/unique caregivers rated SIs (r = 0.69, p < 0.000).
Weak significant correlations were found between age of
the participant and the mean rating of how unusual the
caregiver rated their SIs (r = 0.15, p < 0.000), and age of
the participant and how much the SI interfered (r = 0.06,
p < 0.01.) Mean rating of unique/unusual and interference,
by age of onset is depicted in Fig. 1.
Many caregivers endorsed that their child’s SI was
current (i.e., was ongoing). Of those that were no longer
rated as “current”, SIs were most frequently rated as last-
ing longer than two years (13 categories). The 13 SI cat-
egories that caregivers most commonly reported as having
lasted longer than two years included numbers, objects,
and things (the complete list is included in Table 5). Nota-
bly, all SI categories were most frequently endorsed as
occurring longer than 6 months.

13
Journal of Autism and Developmental Disorders

Mean Characteristics of Special Interest Categories

4.0 12
Ratings of Uniqueness and Interference

Mean Age of Onset (years)

10
3.0
8

2.0 6

4
1.0
2

0.0 0
Transportation

Computers
Construction

Schedules
Numbers

People
Astronomy
Objects

Measure

Sports
Reading

Psychology
Dates
Machines

Plants
Mechanical

Geology
Math

Maps
Things
Collect

Physics

Politics
Time

Religion

History
Animals

Art
Music
Toys

TV

Special Interest Category

Unique/Unusual Interference Age of Onset

Fig. 1  Mean Ratings of Uniqueness, Interference, and Age of Onset by SI Category. For unique/unusual and interference, possible scores range
from 0 (“not unusual/very common”, “doesn’t interfere greatly”) -5 (“very unusual/not common”, “interferes very often”)

Discussion the SIS, a newly developed measure. The measure was

The understanding of SIs in individuals with ASD is crit-
ical as they appear to be highly indicative of ASD and
potentially have positive and negative effects on function-
ing and long-term outcomes. Compared to social com-
munication symptoms, there is limited research on RRBs
in general and, more specifically, on SIs. Of the existing
research, findings are limited by differences in measure-
ment methods and small sample sizes. Given the inherent
heterogeneity of SIs, it is particularly important to charac-
terize SIs in a large sample with a comprehensive measure.
Thus, the current study surveyed caregivers of individuals
with ASD and aimed to comprehensively characterize SIs
in a large sample of individuals across childhood using
developed to evaluate SIs using a wide range of categories
as well as measures of atypicality, functional impairment,
and longevity.
A better understanding of SIs has a broad-reaching
impact for individuals with ASD. First, given the posi-
tive impact of SIs, understanding how SIs manifest across
this heterogeneous population can inform recommenda-
tions for intervention and support. Clinicians may consider
how SIs could be incorporated in intervention and sup-
port programs across settings (e.g., school, clinic, home)
in order to increase the relevance for the individual with
ASD and potentially improve outcomes. Providing psych-
oeducation for parents and clinicians about the potentially
beneficial aspects of their child’s SI may also result in
identifying new methods of developing meaningful life

Table 5  Duration of past (not ongoing) special interests

Response Number of List of SI categories

categories*

Less than 6 months 0 –

6 to 11 months 6 Measurement, dates, computers, politics, physics, history
1 to 2 years 12 Machines, Mechanical, People, time, maps, math, sports, astronomy, religion, geology, psychology, plants
More than 2 years 13 Number, Objects, Things, Animals, Collection, Art, Music, TV, Transportation, Construction, schedules,
reading, toys

*Total number of categories with the response most frequently endorsed by respondents (i.e., based on mode)

13

skills including communication, vocational skills, and
decreased disruptive behaviors (Mottron 2017). Under-
standing the manifestation of SIs in autistic individuals
also has implications for improving overall well being
(Grove et al. 2018). Supports and interventions to support
autistic individuals’ feelings of competency, autonomy,
socialization, and engagement would potentially be more
efficacious when SIs are incorporated (Grove et al. 2018).
Secondly, this information could lead to a better under-
standing of the heterogenous ASD phenotypes. For exam-
ple, it is possible that individuals with more socially-
focused SIs have other phenotypic differences, such as
differences in the social/communication domain. As par-
ents endorsed SIs in very young children, these could be
used as early identifiers of different ASD phenotypes in
the future. Diagnostic practice could also be informed by
a more in-depth understanding of SIs, as it may increase
clinician awareness and lead to easier clinical recognition
of different types of SIs. All of these impacts have the
potential to affect long-term outcomes for individuals with
ASD through more informed identification, diagnosis, and
support.
Frequency of SI Categories
In the current sample, more than one current or past SI was
endorsed in a substantial majority (i.e., more than 90%),
confirming the prevalence of this domain in autism. A small
number of caregivers did not endorse any SIs. This result
was higher than expected given estimates of SIs in 49% to
88% of individuals with ASD (Grove et al. 2018; Klin et al.
2007; Szatmari et al. 2006; Turner-Brown et al. 2011). It is
plausible that caregivers who are not impacted by the pres-
ence of SIs may not have been motivated to take the time to
complete this SI specific survey. One of the intentions of this
project was to comprehensively characterize and understand
SIs in this population and, as such, the SIS is intentionally
broad. However, because the SIS is based on parent per-
ception rather than clinical judgement, parent endorsed SIs
were not corroborated by a trained clinician. Further, the SI
categories do not all have discrete boundaries. For exam-
ple, the SI category of “Numbers and Numerical Informa-
tion” potentially overlaps with “Factual Information About
Things” depending on a respondent’s interpretation. It is
possible that a parent may have endorsed SIs in more than
one category but a trained clinician with the same informa-
tion may have only endorsed one category. Given the nature
of the SIS, it is perhaps not unexpected that the proportion of
SIs in this sample was higher than expected. Further inves-
tigation using the written details provided by caregivers is
an important next step in understanding how respondents
understood the SI categories on the SIS.
13
Journal of Autism and Developmental Disorders
Characteristics of SIs in ASD
SIs in individuals with ASD may be less likely to be social.
One taxonomy of SIs suggests that individuals with ASD
are drawn to SIs based on how objects work versus how
the social world works (Anthony et al. 2013; Baron-Cohen
and Wheelwright 1999; Cho et al. 2017; Turner-Brown et al.
2011). The most commonly endorsed SI categories in this
sample included television, objects, music, toys and collec-
tions. Certainly, high rates of SIs related to objects and col-
lections is consistent with the theory that individuals with
ASD may be drawn to an interest in objects and how things
work. This may also be true with SIs related to television,
music, and toys. It is also plausible that an SI related to these
categories may have a social component (e.g., using toys for
pretend play, focusing on the characters and social aspects
of stories on television). The SIS asks caregivers to provide
specific examples using open text boxes when they endorse
an interest. Analysis of this qualitative data was beyond the
scope of the current study but is an important next step in
understanding how an SI specifically manifests.
How unique/unusual and how much the SI interfered var-
ied by category. Overall, caregivers rated interests as only
rarely interfering which is surprising given that, from a diag-
nostic perspective, by definition an SI significantly interfere
with an individual’s functioning. This descriptive study used
means to broadly describe the sample and does not examine
differences at the person-level which is an important next
step to better understanding how caregivers perceive SIs to
impact their child. However, this relatively low rating of
interference may also reflect parent perception that their
child’s SI is adaptive rather than impairing. This conceptu-
alization is consistent with qualitative studies investigating
autistic adults’ experiences with SIs (Koenig and Williams
2017) and surveys of parents’ experiences of SIs (Mercier
et al. 2000). Thus, while parents acknowledge the presence
of particular interests, they may not generally consider them
to be a hindrance.
Collectively, caregivers rated several SI categories includ-
ing numbers, objects, people, schedules, things and time
as being at least somewhat unusual. It is not particularly
surprising that SIs in these categories would be perceived
as unusual, with perhaps the exception of the people cat-
egory which could be considered the most “social” category.
Examples provided by parents within the people category
included “Alexander Hamilton”, “YouTubers”, and “people
who created his favorite cartoons”. Again, a complete quali-
tative analysis was beyond the scope of the current study
but these examples suggest that an interest in people may
be characterized by collecting facts and not truly including
a social component. Notably, the category considered to be
the least unique, sports, is a developmentally appropriate
interest that is likely common in the NT population. Again,
Journal of Autism and Developmental Disorders
it is important to emphasize that these data were the result
of caregiver report and there may well be differences across
caregivers in what constitutes an unusual or unique interest.
However, understanding what a caregiver perceives unusual
appears to be important because there is a significant cor-
relation between how unusual a caregiver rates an SI and
how much they think it interferes. This finding has direct
implications for intervention and psychoeducation.
The lowest level of interference was endorsed for cat-
egories such as astronomy, plants, religion, measurement,
history, and sports. In contrast, the highest level of interfer-
ence was endorsed for categories such as objects, television,
schedules, and things. Why caregivers perceive certain SIs
to interfere more is important to understand. Results from
the current survey also found that the more unique/atypical
a caregiver perceived a SI to be, the more they perceived
it to interfere with their child’s functioning. This finding
supports the idea that more age-typical SIs, while intense,
are likely more socially acceptable and thus result in less
functional impairment. The categories deemed to be less
interfering are conceivably more adaptive when compared
to categories deemed most interfering. Intense interests in
schedules, objects, and television—categories of SIs deemed
most interfering—likely interfere with social functioning
and other tasks of daily living directly. In contrast, an intense
interest in plants or astronomy has the potential to facilitate
social interactions as well as job related skills. Given the
potential adaptive nature of SIs this finding has implications
for working with caregivers. It is plausible that a caregiver
who perceives an SI as more unusual and as interfering
more with their child’s functioning is more likely to try to
divert their child’s attention from that SI. In fact, it may be
advantageous for the child, their family, and intervention/
support professions to encourage the child’s SI, no matter
how unusual the caregiver perceives it to be. For example,
incorporating a child’s SI into intervention goals can lead
to increased participation in school-based activities (Wood
2019).
Age Differences Across SIs
Not unexpectedly, the number of lifetime interests was sig-
nificantly correlated with age. The small significant corre-
lation, however, was unexpected and given the large sam-
ple size it is unclear how clinically meaningful this finding
is. It is logical to assume that as individuals develop, they
also have the opportunity to develop more interests but this
assumption was not strongly supported with this sample.
While some research has suggested that the number of SIs
may increase with age as individuals develop more diverse
interests (Mercier et al. 2000), in our sample the number of
current SIs was not significantly correlated with age in this
sample. Importantly, this was a cross-sectional study thus
this finding may not fully capture the changes in numbers
of SIs in individuals over time. Further, it is plausible that a
pattern of diversification of interests is present in some indi-
viduals within the sample but the variability at the person
level was lost by using means to describe the sample.
Overall age of onset across all categories of SIs in this
sample was approximately 5 years. Not surprisingly, age of
onset varied by type of SI category a finding that is likely the
result of changes in developmental functioning and language
level. Oldest age of onset was found in categories that can
be described as more socially based. For example, the old-
est mean age of onset was for the category of “people”. In
contrast, the youngest mean age of onset was for categories
such as “transportation”, “mechanical” and “objects”. A
similar pattern has been found when considering intellectual
functioning and SIs. Individuals with ASD who have lower
intellectual functioning may have SIs that are more likely
to be object or sensory oriented, may be more intense, and
are less likely to be socially oriented (Anthony et al. 2013).
Although a measure of intellectual functioning was beyond
the scope of the current project, it is plausible that a similar
developmental mechanism is responsible for the differences
found in age of onset in the current study.
In addition to reporting high numbers of SIs, when SIs
were present, they were likely to last prolonged periods of
time. Caregivers were most likely to report that their child’s
interest had lasted longer than two years and, overall, SIs
were less likely to have lasted less than 6 months.
Limitations
This study addressed gaps in the research by comprehen-
sively evaluating SIs in a large sample of individuals with
ASD, however given the nature of the study design there are
limitations to the findings. Although, to the authors’ knowl-
edge, this is the largest sample of individuals included in a
study measuring SIs, the method precluded clinical confir-
mation of ASD diagnosis. As noted, past research supports
the use of a parent-reported ASD diagnosis (Daniels et al.
2012; Lee et al. 2010), thus collecting data in this manner
was deemed a sound means of collecting data from a large
sample of youth with ASD. Relatedly, additional phenotypic
variables such as ASD symptomology and level of intel-
lectual functioning were not evaluated in the sample which
potentially limits generalizability of the results.
Participants in the study were self-referred and had previ-
ously registered with the SPARK database. Further, this was
a majority White sample and does not proportionally reflect
the general population in terms of race/ethnicity. Further,
participation required internet access. As such, findings may
not generalize to the entire population of individuals with
ASD.
13

Development of the SIS was intentionally designed to
comprehensively assess the types of SIs experienced in the
ASD youth population. The measure resulted in a relatively
long list of categories that were presented to parents sequen-
tially; thus, it is possible that parents endorsed a category
prior to being presented with a category that better captured
their child’s SI. Future analysis of the qualitative informa-
tion provided by caregivers is important in understanding
any possible effects of the sequential presentation of catego-
ries. In addition, the measure asks about all current and past
interests. There may have been issues with recall, especially
for parents of older children, when attempting to note all
previous interests.
It is also possible that the list of SI categories may have
not included a commonly encountered SI. For example,
although endorsement of video games was captured via
qualitative coding in the “other interests” text, it was not
included as an initial item on the survey. This was because
it was not included as an item in the Interest Scale, on which
the SIS was based, and because it did not reach the endorse-
ment inclusion criteria based the narratives in our sample’s
ADI-Rs. Relatedly, though modified from the Interest Scale,
the SIS was not validated by comparing results to existing
measures with similar constructs which is an important next
step.
Future Directions
The descriptive nature of this study provides important
information regarding SIs in individuals on the autism
spectrum. The findings point to many directions for future
research aimed at further characterizing SIs. Validating
the SIS with parallel self-report measures, measures with
similar constructs, and clinician ratings is an important next
step in establishing the broad utility of the SIS. Further,
to better understand the individual differences within the
sample application of person-centered statistical analyses
(e.g., Latent Profile Analysis) would help elucidate patterns
of SI manifestation (i.e., age of onset, interference, unique-
ness, diversification of interests). Controlling for subject
level factors may also add to improved understanding of SI
presentation.
Comparing outcomes by gender would build upon previ-
ous research identifying differences in SIs between males
and females. Additionally, an unexpected finding from this
study was that caregivers tended to rate their child’s SI, on
average, as only rarely interfering. Collecting data from
an NT sample using the SIS is an important next step in
understanding how caregiver perception of SIs in children
with ASD may differ from those identified in NT children.
Future research should collect information regarding cogni-
tive functioning, as this may play a role in type and intensity
of interests (Anthony et al. 2013). Finally, using the SIS as
13
Journal of Autism and Developmental Disorders
a self-report measure in older adolescents and adults would
allow for characterization of SIs across the lifespan and cap-
ture the unique insights about SIs from older individuals on
the autism spectrum.
Another important next step is to refine the SIS. A
key change to the SIS will be the inclusion of a question
related to the perceived benefits of SIs, which will allow for
researchers to collect information that forms a more com-
plete picture of the role SIs can play in the lives of indi-
viduals on the autism spectrum. Identifying ways in which
to combine categories of interests while still ensuring that
participants are asked about a breadth of possible interests
could improve both participant experience while complet-
ing the measure and consistency in responding across par-
ticipants. Qualitative analysis of the open comments made
by participants in this study will be used to aid in measure
refinement. Ideally, further analysis of patterns of responses
can assist with modifying the measure such that, while still
comprehensive in nature, the measure can be administered
more efficiently.
Acknowledgments  We are grateful to all of the families in spark, the
spark clinical sites and spark staff. Special thanks to the participants
without whom this study would not be possible. We appreciate obtain-
ing access to phenotypic data on SFARI Base. Approved research-
ers can obtain the SPARK population dataset described in this study
([include here the URL of the population used, obtained from SFARI
Base]) by applying at https​://base.sfari​.org.
Author Contributions  All authors contributed to the study conception
and design. Material preparation, data collection, and analysis were
performed by KPN, CJB, CB, and SK. The first draft of the manuscript
was written by KPN and all authors commented on previous versions
of the manuscript. All authors read and approved the final manuscript.
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