Journal of Autism and Developmental Disorders

https://doi.org/10.1007/s10803-022-05815-5

ORIGINAL PAPER

Parental Perspectives: How Sensory Sensitivities Impact the Transition

to Adulthood in Adolescents and Young Adults with Autism Spectrum
Disorder
Rachel M. Hantman1,2 · Emily B. Johnston1 · Helen Tager‑Flusberg1

Accepted: 3 November 2022

© The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature 2022

Abstract
Sensory sensitivities are common in autism spectrum disorder (ASD) and impact daily life, but research has largely focused
on children, neglecting older individuals. Likewise, while there is research regarding parental concerns for their autistic
children’s transition to adulthood, little is known about the role of sensory sensitivities. To address this gap, 66 parents of
autistic adolescents and young adults were interviewed and their responses were qualitatively analyzed. All parents believed
their children’s sensory sensitivities impacted their transition to adulthood, primary developmentally/psychologically, inter-
personally/socially, and managerially. These beliefs did not significantly differ by child characteristics, such as age and ASD
severity. Parent perceptions were modality and context specific. Given these findings, transition planning should consider
individual’s specific sensory sensitivities to optimize independence.

Keywords Sensory sensitivities · Autism spectrum disorder · Adulthood · Parents · Transition · Perspectives

Introduction children up to the age of six (Baranek et al., 2006; Tomchek

& Dunn, 2007). Without a complete understanding of how
Sensory sensitivities are common in autism spectrum disor- sensory sensitivities track with development, families with
der (ASD), and they are now included both in the diagnos- older children are left without resources and with concern
tic criteria (American Psychiatric Association, 2013) and for their children’s future. To address this gap, in this study,
as part of the diagnostic process (e.g., Lord et al., 2012; we explored parents’ perceptions of sensory sensitivities in
Rutter et al., 2003) for ASD. Despite being diagnostically their adolescent and young adult children, as well as how
intertwined, sensory sensitivities are frequently studied these sensory sensitivities impact their transition towards
in younger, but not older, individuals with ASD.1 In an independence and to their next stage in life.
updated meta-analysis of sensory symptoms in ASD, of the Just as autism symptoms exist on a spectrum, so do
55 studies examined, on average the participants with ASD sensory sensitivities; some individuals are insensitive to
ranged from 4.6 to 13.6 years old; only 10% included par- particular sensory stimuli (hyposensitive), while others
ticipants who were 25 years old (Ben-Sasson et al., 2019), are overly sensitive (hypersensitive; Dunn, 2001). Sensory
suggesting that there is a substantial developmental gap in behaviors can range from seeking preferred stimuli (e.g.,
the sensory sensitivities literature. Additionally, seminal staring at fans) and missing sensory information (e.g., not
papers describing the high prevalence of sensory sensitivi- noticing pain) to avoiding aversive stimuli (e.g., leaving a
ties in autistic individuals (69% and 95%) only focused on room when someone is wearing perfume) and heightened
sensory awareness (e.g., discriminating differences between
food brands). It has been demonstrated that sensory sensitiv-
* Rachel M. Hantman ities impact different areas of daily life for individuals with
[email protected]
1
Department of Psychological and Brain Sciences, Boston
University, Boston, MA, USA 1
Person-first (e.g., individuals with ASD) and identify-first (i.e.,
2
Present Address: Department of Psychology, University autistic individuals) language will be used interchangeably, as our
of South Carolina, Columbia, SC, USA participants shared their preferences for both.

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 Journal of Autism and Developmental Disorders

ASD, such as education (Ashburner et al., 2008; Cai & Rich- independence but are still uncertain about their children’s
dale, 2016; Howe & Stagg, 2016; Van Hees et al., 2015); future (Cheak-Zamora et al., 2017; Cribb et al., 2019), cit-
participation in community, social, recreational, and familial ing concerns about their children’s unpredictability, lack
interactions/activities (Fernández-Andrés et al., 2015; Hoch- of experience, and difficulties with newness. Families also
hauser & Engel-Yeger, 2010; Linderman & Stewart, 1999; discuss the need to balance their sense of security for their
Little et al., 2015; Pfeiffer et al., 2017; Schaaf et al., 2011); child’s future with their child’s own autonomy (Sosnowy
adaptive behaviors (Cermak et al., 2010; Jasmin et al., 2009; et al., 2018); that is, providing their children with the nec-
Lane et al., 2010; Tomchek et al., 2015; Watson et al., 2011; essary skills to be independent at the expense of parental
Zobel-Lachiusa et al., 2015); challenging behaviors (Hattier worries.
et al., 2013); mental and physical health; and a combination Parents’ expectations for their children’s future also
thereof (Ismael et al., 2018; Kirby et al., 2017; MacLennan relate to their child’s intellectual level (IQ), gender, and
et al., 2022; Reynolds et al., 2011; Robertson & Simmons, symptom severity (Holmes et al., 2016, 2018), such that
2015; Smith & Sharp, 2013). Self-reports from autistic higher IQ, lower ASD symptom severity, and having a son
adults also indicate that their sensory sensitivities function were associated with higher parental expectations. How-
in interactive systems, wherein their sensory sensitivities ever, parental expectations have highlighted discrepancies
are impacted by and impact internal (e.g., valence, sense between the importance and the likelihood of meeting
of control, mental health), as well as, external factors (e.g., adult milestones (e.g., being accepted by the community;
other individuals) that they encounter in their daily lives Ivey, 2004; Sosnowy et al., 2018), such that the perceived
(MacLennan et al., 2022; Robertson & Simmons, 2015; importance of these tasks was greater than their child’s
Smith & Sharp, 2013). Collectively, the literature suggests likelihood of achievement. Other times, parental expec-
that sensory sensitivities can negatively impact everyday life tations were reframed to match their child’s individual
experiences by causing overstimulation to the point of dis- abilities (Thompson et al., 2018). For example, for future
traction, discomfort, decreased participation, and increased living arrangements, some parents reconceptualized living
challenging behaviors, as well as leading to challenges with independently as their child living in a guest house rather
adaptive behaviors, interruptions to family functioning, and than away from their family home. Finally, many parents
negative mental health outcomes. reported unmet resource needs as their child transitioned
As with the broader sensory sensitivity ASD literature, (Cheak-Zamora & Teti, 2015; Dudley et al., 2019; Kuo
the studies that explored how sensory sensitivities impact et al., 2018) and a decline in services during and after
daily living primarily focused on children under 13. In our high school (Laxman et al., 2019). Taken together, many
review of the literature, we identified 15 studies involv- caregivers of autistic children express concerns about their
ing children under 13 years of age (Ashburner et al., 2008; children’s transition to adulthood. However, none of these
Fernández-Andrés et al., 2015; Hattier et al., 2013; Hoch- studies focused on the impact of sensory sensitivities;
hauser & Engel-Yeger, 2010; Jasmin et al., 2009; Kirby instead, they were contextualized in terms of daily liv-
et al., 2017; Lane et al., 2010; Linderman & Stewart, 1999; ing, social, educational, and/or job/vocational skills (Cai
Little et al., 2015; Pfeiffer et al., 2017; Reynolds et al., 2011; & Richdale, 2016; Cribb et al., 2019; Holmes et al., 2016,
Schaaf et al., 2011; Tomchek et al., 2015; Watson et al., 2018; Ivey, 2004; Sosnowy et al., 2018; Thompson et al.,
2011; Zobel-Lachiusa et al., 2015), and three studies exam- 2018), as well as access to services (Dudley et al., 2019;
ined the impact on individuals ages 13–17 (Cermak et al., Kuo et al., 2018; Laxman et al., 2019) and navigating the
2010; Howe & Stagg, 2016; Ismael et al., 2018). Only two health care system (Cheak-Zamora & Teti, 2015; Cheak-
studies identified how sensory sensitivities impact daily life Zamora et al., 2017). No one has yet asked caregivers how
in young adults over the age of 18 (Cai & Richdale, 2016; they think their children’s sensory sensitivities impact
Van Hees et al., 2015); however, sensory sensitivities were their child’s transition.
not their primary focus, and three studies examined the In the current study, in order to address these research
impact of sensory sensitivities in older adults (MacLennan gaps, we took a qualitative approach, asking parents of
et al., 2022; Robertson & Simmons, 2015; Smith & Sharp, young adults with ASD about the impact of their children’s
2013). sensory sensitivities on this developmental period through
As the people who advocate for and support their chil- semi-structured interviews. Due to the lack of research at
dren, caregivers have unique perspectives about their the intersection of sensory sensitivities and the transition to
children’s transition to adulthood. Previous studies exam- adulthood, we did not have any a priori hypotheses. We did,
ining caregiver perspectives demonstrated that families however, have a priori research questions:
feel as though their children have progressed towards

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Journal of Autism and Developmental Disorders

1. To establish context, we first asked, what sensory sen- Table 1  Parental and child demographic information
sitivities do parents report in their interviews? Do they Characteristics Parents Children
differ by child characteristics, such as gender or age?
# % # %
2. As our main research questions, we then asked:
Mother/daughtera 64 96.97 11 16.67
a. How do parents believe that their child’s sensory
Non-Hispanic/Latino 61 92.42 63 95.45
sensitivities impact or will impact their child’s tran-
Race
sition to adulthood?
Asian 3 4.55 1 1.52
b. How do these beliefs differ by child characteristics,
Black/African American 4 6.06 4 6.06
such as age, gender, independence level, sensory
White 54 81.82 52 78.79
(i.e., auditory and tactile) hypersensitivity, anxiety,
Multiple 2 3.03 6 9.09
adaptive ability, language ability, and ASD symptom
Unknown/decline 3 4.55 3 4.55
severity?
Highest level of education
< 8th grade 0 0 3 4.55
9–11th grade 0 0 31 46.97
High school or GED 1 1.52 17 25.76
Methods
Vocational or trade degree 1 1.52 0 0
Associate’s/2-year degree 10 15.15 1 1.52
Participants
Courses towards a college degree 3 4.55 5 7.58
College degree 22 33.33 2 3.03
This research was approved by the Boston University
Master’s degree 21 31.82 0 0
Institutional Review Board. All participants were eligi-
Professional degree 8 12.12 0 0
ble to participate in our study if they were caregivers of
Unknown/decline/other 0 0 7 10.61
a child with ASD, who was transitioning to adulthood
Combined household income
(16;0–25;11 years old), who had sensory sensitivities (past
< $50,000 8 12.12 – –
or present), and who lived at home with their caregiver.
$50,000–$99,999 10 15.15 – –
Participants were conversationally fluent in English. Par-
$100,000–$149,999 17 25.76 – –
ticipants were recruited through convenience sampling
$150,000–$199,999 9 13.64 – –
from the Center for Autism Research Excellence’s par-
$200,000–$249,999 7 10.61 – –
ticipant registry at Boston University, online community
≥ 250,000 6 9.09 – –
platforms, social media posts, and through participant
Decline 9 13.64 – –
referrals. The study was carried out remotely during the
Relationship status
Covid-19 pandemic and included participants from across
Married, remarried, or living with partner 54 81.82 – –
North America.
Divorced, separated, single, or widowed 12 18.18 – –
126 parents expressed interest in the study by complet-
Language abilities
ing an online screener, 35 of whom were ineligible (e.g.,
Verbal – – 42 63.64
child did not have ASD). Of the 91 eligible parents, 77
Minimally/non-verbal – – 24 36.36
parents completed the consenting process via Zoom, a
Comorbid ­diagnosisb – – 53 80.00
video conferencing platform. Four parents then withdrew
Intellectual ­disabilityb – – 28 42.42
from the study, one citing that she did not have enough
time to participate, and three parents did not respond after Percentages are out of 66 participants
four interview scheduling requests. Seven of the remain- a
One parent was a stepmother and one child identified as gender fluid
ing 73 parents were excluded from analyses because their b
As per parent report
children received an autism severity score below the ASD
cut-off on the Social Responsiveness Scale-2 (SRS-2; Con-
stantino & Gruber, 2012), leaving a final sample size of
66 parents. Four parents had more than one child (two or
three) who met criteria for the study (e.g., 17-year-old
All parents indicated that they were their child’s primary
twins, each with different sensory sensitivities) and com-
caregiver. The parents were primarily mothers (97%), and
pleted all components of the study for each child. Because
their children were primarily sons (83%). At the time of the
their perspectives were unique for each child, for the pur-
interview, their children were, on average 19.42 years old
poses of analyses, these parents were re-counted each time
(SD = 2.54 years), ranging from 16.03 to 25.47 years. See
they participated.
Tables 1 and 2 for parental and child characteristics.

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Table 2  Children’s scores on questionnaires

Variables of interest Mean Median SD Minimum Maximum

VABS-3
Adaptive behavior ­compositea Standard S
­ corea 66.58 69 19.02 20 105
a
Daily Living Skills Standard ­Score 69.35 74 23.44 20 120
PRAS-ASDa 23.20 22 14.10 1 62
ABC-2
­Irritabilitya 8.64 8 8.38 0 35
Hyperactivity/noncompliancea 10.24 8 9.08 0 41
Demographic form
Age at ­interviewa 19.42 18.79 2.54 16.03 25.47
Independent Composite ­Scorea 4.94 4.31 3.62 − 1.64 13.18
AASP
Touch hypersensitivity Z-Score 0.72 0.17 0.98 − 2.53 2.45
Sound hypersensitivity Z-Scorea 0.11 0.09 1.0 − 3.26 1.58
# %

SRS-2 ­Severityb
Severe 32 48.48
Moderate 25 37.88
Mild 9 13.64
a
Using the Shapiro–Wilk test, the variables were not normally distributed
b
Not tested for normality

Procedure verbal ability. Scores range from 0-75, with higher scores
indicating more anxiety.
After completing the consenting process, participants were
invited to complete online questionnaires and were then Social Responsiveness Scale, Second Edition (SRS‑2;
scheduled to participate in a recorded semi-structured Constantino & Gruber, 2012)
interview.
The SRS-2 assesses social impairments in ASD. It relies on
Parent Questionnaires t-scores to establish ASD severity, where t-score < 60 is the
cut-off for ASD. T-scores 60–65, 66–75, and > 75 refer to
Vineland Adaptive Behavior Scales, Third Edition (VABS‑3; mild, moderate, and severe ASD symptom severity respec-
Sparrow et al., 2016) tively. As our study was remote, we used the SRS-2 to verify
that the children met criteria for ASD.
The VABS-3 is a standardized, normed parent survey used
to measure adaptive behavior and support diagnosis of intel-
lectual and developmental disabilities. Parents completed the Aberrant Behavior Checklist, Second Edition (ABC‑2; Aman
domain-level parent-caregiver form. Per domain, scores range & Singh, 2017)
from 20–140 (M = 100, SD = 15), with higher scores indicating
better adaptive skills. We used two standard scores from the The ABC-2 assesses challenging behaviors in a variety of
VABS-3: the Adaptive Behavior Composite (ABC) Standard daily settings, such as home, school, and work. Two of the
Score and the Daily Living Skills Standard Score. five subscales, Irritability and Hyperactivity/Noncompli-
ance were used in our analyses; for both subscales, higher
Parent Rated Anxiety Scale for ASD (PRAS‑ASD; Scahill scores indicate more challenging behaviors. For Irritability,
et al., 2019) scores range from 0 to 45. For Hyperactivity/Noncompli-
ance, scores range from 0 to 48.
The PRAS-ASD assesses anxiety severity in youth with
ASD. It was specifically designed to not rely on children’s

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Journal of Autism and Developmental Disorders

Demographic Information Touch Hypersensitivity Z‑Score

This questionnaire was adapted from previous studies exam- From the AASP, we calculated a z-score for responses
ining this transition period (Holmes et al., 2018; Ivey, 2004; describing touch hypersensitivity (i.e., questions 27, 29,
Laxman et al., 2019; Rehm et al., 2012; Thompson et al., 31, 33, and 34). We did not include questions 35 (“I move
2018). It contained questions about family and child back- away when others get too close to me”) or 38 (“I avoid
ground, child medical history, intervention history, level of standing in lines or standing close to other people because
independence, and caregiver expectations for how their child I don't like to get too close to others”) because we did not
will progress into adulthood. want to risk conflating touch hypersensitivity with social
anxiety.
Independent Composite Score
Sound Hypersensitivity Z‑Score
This composite variable was calculated to determine child
level of independence based upon highest level of com- From the AASP, we calculated a z-score for responses
pleted education, high school graduation plan, employ- describing sound hypersensitivity (i.e., questions 51, 53,
ment, and driver’s license status from the demographic 54, 56, 57 and 60).
questionnaire, as well as z-score transformed Daily Liv-
ing Skills standard score from the VABS-3. Individual Interview
items were summed; higher total scores indicated greater
independence. The interview script was created by the first author, bor-
rowing questions from Thompson et al. (2018) and Cribb
et al. (2019). It contained five main questions, eliciting
Adolescent/Adult Sensory Profile (AASP; Brown & Dunn, information about children’s sensory sensitivities, com-
2002) munity acceptance, children’s level of independence, how
sensory sensitivities intersect with this transition, and what
The AASP was used to measure sensory processing this transition means to parents. While the interviewer, the
patterns. Although designed as a self-report measure, first author, followed a script (see Supplementary Online
to account for the variability in cognitive and language Resource 1), she asked follow-up questions given partici-
abilities of participants’ children, we instructed all par- pants’ unique answers and rephrased questions if partici-
ents to complete the questionnaire with their children. pants did not understand them. The interviews took place
The AASP generates scores based upon how similar an over Zoom and were, on average, 75 minutes in length.
individuals’ sensory behavior is compared to others. Completed interviews were transcribed by an outside vendor
Respondents describe the frequency of their behavior (Academic Language Experts (ALE)). Upon receipt, 44%
across different sensory modalities (e.g., touch), in of the transcripts were verified to ensure accuracy and all
which higher scores indicate higher frequencies. These identifiable information was redacted.
behaviors are mapped onto two continua, neurological
threshold (low versus high) and behavioral response
(passive versus active). Low threshold, which describes Analysis Plan
requiring only a small amount of sensory stimuli, can
also be called hypersensitivity (Dunn, 2001; Pfeiffer Qualitative Data
et al., 2017). For our quantitative analyses, we focused
on hypersensitivity behaviors specifically because the We used content analysis, a form of qualitative data analysis,
literature suggests that hypersensitivity is negatively to identify parent perceptions expressed in the interviews
related to participation in daily tasks, family function- (Elo & Kyngäs, 2008; Elo et al., 2014; Graneheim & Lund-
ing, schooling, and interactions with others (Kirby man, 2004; Hsieh & Shannon, 2005). In doing so, we used
et al., 2017; Little et al., 2015; Pfeiffer et al., 2017; clauses (i.e., complete thoughts) as our unit of analysis,
Reynolds et al., 2011; Robertson & Simmons, 2015; coded at the manifest level (i.e., what the participants are
Schaaf et al., 2011) and can lead to stressful daily saying, as opposed to the meaning underneath what they are
experiences (MacLennan et al., 2022; Smith & Sharp, saying), took an inductive approach (i.e., building our coding
2013). Quantitatively, we also focused on touch and scheme based upon participant responses, not preexisting lit-
sound hypersensitivity because they were the most fre- erature), and coded clauses mutually exclusively. As answers
quently endorsed sensory modalities in our interviews to our research questions were bounded by specific sections
(see Table 5). of the interview, we analyzed Question 1 and portions of

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 Journal of Autism and Developmental Disorders

Questions 4 and 5 of the interview script (4, 4i, 4ii, 4iv, and Quantitative Data
5iii; see Supplementary Online Resource 1).
The interview coding scheme was developed by the first In line with Henninger and Taylor (2014), from the cod-
author. Upon data analysis, she was already familiar with ing process, we first established the frequencies of endorsed
the data, having conducted all the interviews and reviewed sensory sensitivities (e.g., 37/66 participants endorsed taste)
the transcripts upon receipt from ALE. To further increase and the ways in which sensory sensitivities impact the transi-
her familiarity, the first author then read all relevant portions tion to adulthood (e.g., 34/66 participants endorsed “Living
of the transcripts and made notes on her initial impressions environment”). Then, queries were run in NVivo to deter-
(Henninger & Taylor, 2014; Hsieh & Shannon, 2005). These mine how many participants endorsed particular sensory
observations were then grouped into preliminary categories sensitivities and impacts by their child’s characteristics (e.g.,
and applied to nine transcripts (i.e., clauses were coded with four daughters versus 33 sons for taste sensitivities). Using
preliminary categories). In doing so, new categories were the values extracted from the NVivo queries, to assess if
developed and revised when clauses did not fit into a cat- sensory sensitivities or impacts differed by child character-
egory or fit into multiple categories. This process led to the istics (i.e., age, gender, independence level, sensory hyper-
development of a draft coding scheme that included clear sensitivity, anxiety, adaptive ability, language ability, and
definitions for each category. ASD symptom severity), we employed chi-square analyses.
The draft coding scheme was then discussed with the sec- In the chi-square tests, we used median splits for continu-
ond author. Both coders applied it to 2–4 transcripts, met ous variables (e.g., age, VABS-3 ABC score) and catego-
to discuss coding, and modified the draft coding scheme to ries for categorical variables (e.g., gender, language ability).
resolve discrepancies. They iteratively repeated this process Chi-square tests were run in R version 4.0.5 (R Core Team,
until the coding scheme did not change when applied to tran- 2021). To account for Type I errors, we employed the Benja-
scripts; 24 transcripts were tested during development. At mini–Hochberg correction method (Benjamini & Hochberg,
this point, the coding scheme and the codebook were con- 1995; Thissen et al., 2002) for each set of chi-square tests.
sidered finalized. The final scheme had eight sensory sensi-
tivity categories (see Table 3) and 11 categories describing
the ways in which parents believed their children’s sensory
sensitivities impacted their transition to adulthood (“impact
Results
categories”; see Table 4). Two impact categories, “Sensory
management” and “Interference of tasks or opportunities”,
Research Question 1: Parent Reported Sensory
were considered vague categories. Clauses were coded
Sensitivities
mutually exclusively, so if a clause referenced a vague and
During the interviews participants endorsed, on average,
a more specific category (e.g., “Living environment”), the
4.06 sensory sensitivities, ranging from 1 to 7 sensory sen-
more specific category was used.
sitivities with a mode of 4 and 5 (see Table 3 for definitions
Once the codebook was finalized, the interviews were
and Table 5 for frequencies).
randomly ordered to remove potential order effects on cod-
Parents most frequently endorsed touch and sound (83%),
ing. During the coding process, the first two authors then
followed by sight (58%), taste (56%), smell (55%), unclear/
applied the coding scheme to the transcripts by identifying
other (52%), food texture/temperature (38%), and bodily
categories that mapped onto participants’ clauses. That is,
states (33%). Parents described sensory seeking behavior for
clause by clause, the first two authors determined which
preferred stimuli, as well as sensory avoidance of aversive
categories aligned with the participants’ clauses. All tran-
stimuli. One parent explained, “He puts crushed red on eve-
scripts tested during coding scheme development were re-
rything… I’m afraid what his stomach’s going to look like
coded using the final scheme and were coded using NVivo
as he gets older because of the spice… he always say[s] it
12 (QSR International Pty Ltd, 2018). The first and sec-
has no flavor… unless it’s a pow flavor, to him it’s nothing.”
ond author both coded the first three interviews using the
While another parent recounted, “He doesn't [do] certain
finalized codebook to ensure high inter-rater reliability
textures in his mouth…Sticky, gooey stuff. He won't go any-
(IRR = 89.99%). Throughout the coding process, they
where near oatmeal or anything that has a similar texture to
randomly coded 11 more interviews for reliability; their
oatmeal.” Similarly, parents discussed both hypersensitivity
final IRR was 90.31% across the 14 interviews (21.21% of
and hyposensitivity. One parent reflected on how she began
the sample). Coding discrepancies were resolved through
to understand her son’s touch sensitivities, “… [my child]
discussion. The first author independently coded 47 inter-
said [this] one day that just blew my mind… [my child]
views (71.21%) and the second author coded five inter-
said, ‘Dad, the water is too wet.’” Conversely, another par-
views (7.58%).
ent described the opposite scenario, “And on one side of the

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 Table 3  Codebook for endorsed sensory sensitivities
Category Definition Exemplar quotes

Touch Includes descriptions about touch, putting things in one’s mouth, fabric/clothing,“He has tactile issues, so if he’s eating in front of people and he picks up like a
light/heavy pressure, (e.g., stomping, jumping), what can be on the skin/body, piece of toast for example, he doesn’t like getting the fine grains on his fingers,
and toothbrushing so he’ll kind of immediately wipe it on himself… he can’t tolerate it being on his
fingers for two seconds and he just has to do whatever, he has to get it off right
away”
Sound Includes descriptions about sound, auditory, noise, hearing, and pitch. Includes “So, basically most of the sensory issues seem to revolve around audio. So, like,
hyperacusis and misophonia loud noises, especially if they’re startling noises, even from the time she was a
Journal of Autism and Developmental Disorders

baby, that has always been something that I’ve been aware that she had an issue
with.”
Sight Includes descriptions about vision, sight, lightness, and darkness “Oh, it could be light at home, it could be light on her…on my phone and that she
would turn it down, on my iPad that she would turn it down, all the television
or you know, of course daylight. And if it’s on a very sunny day she will have
a problem… She wears glasses. So we had it so that she have these transitional
lens, so whenever she goes out, it just automatically is much easier for her
to manage than to have to put a clip on or whatever. It’s a big issue when she
drives…”
Taste Includes descriptions about taste, food, flavor, diet, and palate, as it relates to “He likes, popcorn chicken, he likes tacos, but a certain kind of tacos. He likes
eating some kind of quesadilla from Taco Bell… I have been trying to mimic that at
home but it’s not the same. He knows that it’s not from Taco Bell, so it’s not the
same.”
Food texture/temperature Includes descriptions about food textures (e.g., crunchy, slimy, slick, goopy) or “He dislikes anything gushy, mushy, gritty, oatmeal or cream of wheat or some-
food temperatures (e.g., hot or cold items), as it relates to eating thing like that but he loves smooth and creamy, he likes yogurt or like a pudding
texture, he’ll eat that.”
Smell Includes descriptions about smells and odors. Includes lack of smell “Perfume, perfume. If she gets somebody that has a lot of perfume on she will,
‘I’ve got to move, I’ve got to move, I need to move now because they’ve got a lot
of perfume on,’ and I can’t even smell it.”
Bodily states Includes inability to sense pain, interoception, proprioception, and vestibular sen- “This is a sensitivity he doesn’t have, he’s impervious to the weather. So, it doesn’t
sations. Also includes inability to sense hot/cold external temperature and hot/ matter to him if it’s 90, 95, 100 degrees, it doesn’t matter to him if it’s 25, 30,
cold water 35 degrees …He doesn’t notice [those temperatures], he’s impervious to it, it
doesn’t faze him in the least. So, there’s no for him to say, ‘oh, it’s cold, I should
put on a jacket,’ or anything. I mean, it’s me just saying, ‘no, [son’s name], you
need to wear a jacket or something.’”
Unclear/other Includes descriptions where the sensory sensitivity is unclear (e.g., uncertainty “He’s not sensory deprived, but he looks for sensory input elsewhere, you know,
regarding its presence or what is driving the sensitivity) or not included in our because he doesn’t have the awareness kind of, you know, on his own to … to or
codebook input. I don’t know how to explain it.”

These codes describe any current sensory sensitivities, sensory insensitivities, and/or sensory interests

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 Table 4  Codebook for endorsed impacts of sensory sensitivities on the transition to adulthood
Category Definition Exemplar quotes

13
Lack of Impact Includes statements about how parents do not “I don’t think his sensory stuff really limits that much because he, you know, he can tolerate
believe that their children's sensory sensi- a lot… he doesn’t tear up clothing in a store or, you know, damage things, you know, public
tivities impact their transition to adulthood. stuff or whatever. So, you know, I don’t think it will prevent him from doing something.”
Includes descriptions of uncertainty and the
sensitivity being integral to their child
Interpersonal, community, or social situations Includes descriptions about social situations, “Beaches are not good… bright sunlight, loud crashing waves, and the sand, it’s just a perfect
socially acceptable (or expected) behaviors, storm, a sensory nightmare, and we do live in Maryland and so we’re on the coast, and so
the child's ability to go out into the commu- going to the beach is definitely something that people do socially here. So, I think it’s going
nity and participate, relationships, navigat- to these social events, so, going to concerts, that’s out, going to movies, probably out, going
ing the environments in which behaviors are to the beach, right out. So, there are a lot of activities that he’s just not going to be able to
socially appropriate or inappropriate participate in, and it does have social repercussions, absolutely.”
Living environment Includes descriptions about how their current “When you lived in an apartment usually there are the noises of the other people in the other
or future home/living units, and that’s part of apartment living, right? So, I could imagine that being a challenge
for him.”
Developmental or psychological Includes descriptions about skill development “…independence, perfect example, who wants to bake and cook and use a mixer if you have to
(e.g., gaining new skills/more independence, go like this [mimics hands covering ears tightly] the whole time, right? So now, you know,
personal motivation, overcoming challenges, she can work the…she can make herself a smoothie, she can, you know. So yeah, I mean, I
using sensory preferences as a reinforcer). would say that they are, you know, directly related.”
Includes developmental descriptions
about how a child's sensory sensitivities
alter parents' expectations for their child's
future. Includes descriptions about mental/
emotional health (e.g., sensory sensitivities
causing stress, interfering with happiness,
leading to pleasure)
Parental, caregiver, or staff support/involve- Includes descriptions about how a parent/ “Having an assistant with him would be necessary if his sensory was not under control. Things
ment caregiver supports their child and does can happen, things can happen out there that you haven’t anticipated noise-wise.”
additional planning related to their sensory
sensitivities
Physical safety, physical health, and hygiene Includes descriptions about physical safety, “I mean, I worry about it. If he doesn't brush his teeth, his teeth are gonna rot out of his head,
physical health, and hygiene in relation to or he's gonna get bleeding gums, and it's gonna lead to root canals and all kinds of other
themselves and others stuff, you know. And I just don't want that stuff to happen.”
Profession—school, job, or vocational training Includes descriptions about how sensory “It’s going to be very hard for him to get a job, even if he went to a supermarket, he would
sensitivities impact schooling, their job, or not be able to even bag groceries because if one person yelled at him, it would be the whole
vocational training sensory overload or if he had to put something in the bag and it was wet or if he had to put
something in the bag and it was hard or it was meat, something like that and something that
touched his hand that was gushy, it would end up being all over the place, the bag would go
on the floor and he would just walk into the corner and go ‘Ah, ah, ah.’ So, that’s going to be
a big problem for him, even just finding a job because of his sensory issues.”
Self-advocacy or lack thereof Includes descriptions about (in)ability to use “… to me the biggest piece is self-advocacy, because that I think ultimately is the hallmark,
language to communicate needs, the need well, at least one of the hallmarks of adulthood, is to be able to speak up for yourself and
for self-advocacy, or the need to ask for what you need, to be able to ask for help when you need it.”
accommodations
Journal of Autism and Developmental Disorders
 Journal of Autism and Developmental Disorders

Table 5  Frequencies of Category # %

endorsed sensory sensitivities

the way that feels, and it's just going to be a roadblock to new experiences, to new people, to
aversion to smell, an aversion to the way that looks, the way that sounds, the way that tastes,
Includes descriptions about sensory sensitivi- “Because he already has a lot of resistance to change to new situations, to trying things, just
1. Touch 55 83.33

because that comes with the whole package of autism. And then you add on top of it and
understand that there are things that she needs and absolutely has a right to, while at the
“I think kind of her being able to sort of integrate her sensory needs into her daily life to
2. Sound 55 83.33
3. Sight 38 57.58
4. Taste 37 56.06
5. Smell 36 54.55
6. Unclear/Other 34 51.52
7. Food texture or 25 37.88
same time understanding, again, how to behave appropriately…”

food tempera-
ture

“But I think you should just put trust you know, in your kids.”
8. Bodily states 22 33.33

Percentages are out of 66 par-

ticipants

Table 6  Frequencies of endorsed impacts of sensory sensitivities on

the transition to adulthood
Category # %
new things, to new places.”

1. Developmental or psychological 59 89.39

2. Interpersonal, community, or social situations 55 83.33
These codes describe how parents believe their children's sensory sensitivities (will) impact their transition to adulthood

3. Sensory management 54 81.82

4. Profession—school, job, or vocational training 46 69.70
Exemplar quotes

5. Interference of tasks or opportunities 45 68.18

6. Parental, caregiver, or staff support/involvement 44 66.67
7. Lack of impact 37 56.06
8. Physical safety, physical health, and hygiene 37 56.06
9. Living environment 34 51.52
tions, adapting, shaping behavior, or increas-

ity, preoccupation with sensory sensitivities,

tion, losing track of tasks, lack of productiv-
needs, managing reactions to sensory situa-

ties leading to their child missing informa-

10. Self-advocacy or lack thereof 33 50.00

Includes descriptions about self-regulation,
trust in child's ability to manage sensory

unclear or not included in our codebook

and sensory sensitivities restricting new

Includes descriptions where the impact is

11. Unclear/other 8 12.12

Percentages are out of 66 participants

ing tolerance to aversive stimuli

experiences/opportunities

spectrum is not feeling things. And that’s going on with [my

son]… not feeling how clothes are on properly or not, not
feeling whether your hands are messy or your face is messy.”
None of the frequencies reported in Table 5 differed sig-
Definition

nificantly by age or gender when using median splits.

Research Question 2a: The Impact of Sensory

Sensitivities on the Transition to Adulthood

On average participants endorsed 6.85 impacts, ranging from

Interference of tasks or opportunities

4 to 10 impacts with a mode of 8 (see Table 4 for definitions

and Table 6 for frequencies).

Developmental or Psychological
Sensory management
Table 4  (continued)

Nearly all the parents (89%) described how their children’s

Unclear/other

sensory sensitivities impacted them developmentally or

Category

psychologically as they transitioned. Parents discussed

how their children’s sensory sensitivities impacted their

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 Journal of Autism and Developmental Disorders

expectations for their children achieving independence. In behaviors and what others viewed as socially acceptable.
doing so, parents evoked this idea of a trajectory towards They discussed how their children’s sensory behaviors
adulthood and independence. Their descriptions ranged caused unwanted attention because their behaviors were
from that trajectory being truncated, obscured, or slowed. unexpected, such as being unusual actions for young adults
Parents also described hopes that their children’s sensory (e.g., plugging their ears) or because their children other-
sensitivities would not be limiting and that the sensitivities wise presented “typically.” Some parents described that they
would improve. However, some parents felt that the sensory were not bothered by the negative attention, while others
sensitivities were not insurmountable. For example: were. Some parents worried that their children’s unexpected
behavior would elicit negative behaviors in others. One par-
And, as I watched him work through these sensitivities
ent questioned:
and work through the challenges in his life, I saw…
that he could overcome certain things and he could And how do you make sure you’re controlling your envi-
be a productive member of society. So why can’t he ronment in a way that’s acceptable…? …unfortunately,
continue on that track and live independently and, you people… if they don’t get that expected behavior, they do
know, transition to adulthood? … it’s going to take sort of get agitated, because it’s unexpected. And people
longer so, you know, I got to keep that perspective. But don’t really like change or unexpected. So, really, giving
he can do it eventually, in his time. him that toolset to, like, transition, not just to transition
but, like, to survive it. Because, like, realistically, he’s
Other parents then described sensory sensitivities as
trying to operate in a world that he doesn’t understand
facilitating skill development, in that a preferred sensory
or belong to because it’s not his world.
activity would be used as reinforcers (e.g., swinging as a
reward for verbally identifying an object) and the desire to Driven by worries of stigmatization, parents helped their
learn an independent skill helped build tolerance to aversive children understand socially appropriate behaviors (e.g.,
stimuli (e.g., using a hand mixer to make cookies despite the requesting that someone stop making a particular noise rather
unpleasant sounds). than yelling). Similarly, some parents described how their chil-
Within this category, parents also discussed how sensory dren learned to mask their behaviors in public, such that they
sensitivities impacted their children psychologically posi- did not receive negative attention. Many parents expressed
tively, such as providing a source of leisure, and negatively, frustration at the conflict between wanting their children to
such as causing stress or anxiety and interfering with happi- embrace who they are and the realities of social expectations
ness. Some parents used common language, discussing how and other people’s judgement. At the interpersonal level, some
their children’s sensory sensitivities impeded their ability parents believed that their children’s sensory sensitivities
to “feel comfortable in their own skin.” Other parents dis- would impact their abilities to form connections (e.g., roman-
cussed their children’s sense of self and self-awareness in tically due to challenges with physical touch, platonically due
relation to their sensory sensitivities, describing the ways to avoiding environments with aversive auditory stimuli) and
in which their children knew about their sensory sensitivi- participate in social gatherings (e.g., inability to go to restau-
ties and the challenges it presented. However, some parents rants due to taste aversions).
talked about how their children were not able to recognize
their sensory sensitivities and how this lack of awareness Sensory Management
was something they hoped would dissipate over time. Some
parents explicitly discussed what type of self-awareness their Many parents (82%) described how their children’s sensory
children needed to develop in order to be successful, focus- sensitivities impacted their transition to adulthood through
ing on understanding how much the sensory stimuli were their (in)ability to manage them. Many parents described their
bothersome. Finally, parents also described how they hoped strategies as “coping”, as well as learning to “tolerate”, “over-
that their children did not think less of themselves for having come”, or “deal” with aversive stimuli; others talked about
their sensory sensitivities, emphasizing that everyone has “controlling” or “managing” sensory behaviors. While some
their own quirks and preferences. parents broadly talked about sensory management, others were
specific regarding the management strategies their children do
Interpersonal, Community, or Social Situations or do not use (e.g., wearing headphones).
Some parents felt that their children’s ability to transition
A majority of parents (83%) expressed beliefs that their was impeded because they did not know when or how to man-
children’s sensory sensitivities impacted or would impact age their sensitivities. However, other parents felt confident
them socially. At the community level, many parents talked that their children could access management tactics when
about other people’s perceptions of their children’s sensory needed. Further, some parents explained that while their

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Journal of Autism and Developmental Disorders

children knew which strategies to rely on once in a sensory Interference of Tasks or Opportunities
situation (e.g., locating sunglasses after going outside), their
child’s next step towards independence was anticipating and 68% of parents described how their children’s sensory sensi-
preparing for those scenarios (e.g., packing sunglasses in a bag tivities impeded their success as they transitioned, narrowing
beforehand). Like with other categories, other’s perceptions of their options in terms of what they can do and where they
their children’s sensory management strategies were common can go. Parents felt that their children’s sensory sensitivi-
in parents’ responses. One parent predicted, “That’s probably ties prohibited their children from moving forward and from
gonna be… a life-long challenge probably for him because learning new skills. One parent explained:
he’s got this issue and he deals with it the way he knows how
I’d have to go back to that chain… it disallows him
which is great but others may not understand what he’s doing.”
from being able to do the next thing... a lot of stuff he
can’t do… has to start from the sensory, the sounds,
Profession—School, Job, or Vocational Training
the touch…tasting, he can’t cook because he can’t taste
the food and he can’t pour the things because he can’t
70% of parents discussed their child’s sensory sensitivities
touch the things… it all connects back to sensory.
impacting their profession. Because of the age range of the
participants’ children (16;0–25;11), professions encom- For other parents, this concern went a step further; they
passed schooling, jobs, and vocational training. Parents felt believed that their children’s sensory sensitivities prohibited
that their children’s sensory sensitivities impacted the type task completion, “…he'll start becoming so bothered… that
of profession they could have, their ability to perform it, and he then focuses on that… the task he can do then becomes
their interactions. extremely compromised because now his body and his emo-
Children’s sensory sensitivities both facilitated and lim- tions and everything is very focused on that sensory… then
ited job opportunities. Some parents felt that their children’s that productivity stops…” Parents also discussed that their
sensory sensitivities could be harnessed into a career. One children were missing information due to sensory behav-
parent hoped, “… audio engineering… is an example of a iors distracting from (e.g., seeking oral input) or blocking
job where being sensitive to the audio is an enhancement… (e.g., wearing headphones) their environment. Some par-
So, if he could find something like that… it would be a gift ents believed that their children’s distress about potentially
to him.” Parents also discussed that their children needed aversive sensory situation minimized their ability to have
to find jobs in environments that met their sensory needs new experiences and to identify new sources of happiness.
(e.g., a shortened work week to compensate for being over- One parent said, “…it keeps her from doing things…there's
whelmed by sensory stimuli). Conversely, some parents wor- always that fear or anxiety or the feeling of that scratchy
ried that their children’s sensory sensitivities would make fabric… it's almost like you're traumatized, right?” Some
it difficult for them to find or maintain a job (e.g., touch parents worried that this avoidance would even lead to social
sensitivities to clothes eliminating jobs with dress codes). isolation later in life.
Other parents expressed concern that their children’s sensory A subset of parents talked about how auditory sensitivi-
sensitivities compounded the existing challenges of finding ties limited the ways in which their children could travel
a job given their skill level. For example, a parent explained, or the places they could go. For example, if their children
“…the noise, so you know, when you have low job skills… were averse to the sound of crying babies, they could not
Some might be like assembly line, or they might be in a fly because they would be trapped in a plane, thereby limit-
store, and that, you can’t always control the noise volume.” ing future opportunities. For other families, their children’s
Similarly, some parents felt that their children’s sensory negative behaviors to aversive stimuli were so negative that
sensitivities would enhance their work performance (e.g., they stopped visiting particular environments where the
using perfect pitch in audio editing positions), while others stimuli might be present, again limiting the child’s future
feared it would hinder them (e.g., aversive auditory input opportunities.
derailing success). Parents also emphasized that their chil-
dren’s sensory sensitivities would impact their work inter- Parental, Caregiver, or Staff Support/Involvement
actions, such as reacting negatively to a handshake during
an interview. For schooling, some parents believed that Two thirds of parents (67%) discussed ways in which they,
their children’s sensory sensitivities created barriers, such other caregivers, and staff support their children navigate
as noises being distracting or engaging in visual stimula- their sensory sensitivities as they have aged. Parents often
tory behavior at the expense of attention. Conversely, other described plans they implement to help their children, such
parents explained that their children masked their sensory as mentally preparing their children for loud events, mini-
sensitivities at school and were able to “hold it together.” mizing aversive stimuli in their home to eliminate sensory
distress, finding resources for their child, and planning for

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 Journal of Autism and Developmental Disorders

the future by establishing guardianship, trusts, and familial how agitated he was with that street sound and stuff.
responsibilities. In doing so, parents demonstrated the extent He doesn’t like the light, but he’ll go ahead into the
to which they would go to help their children with their sen- light if something is pushing him. He will go to work;
sory sensitivities. To make community spaces more under- he will get on that schedule and he will meet up with
standing of her child’s sensory needs, one parent described, friends in the daytime and stuff. So I don’t see visually
“it puts more pressure on me as a parent and a legal guard- that being an issue.
ian, because I feel the need to clear a path, pre-teach any
In these moments, some parents also articulated that
public place he’s going to.” Parents also described including
they did not view their children’s sensory sensitivities as
the sensory sensitivities in their children’s IEP goals and
problematic and sometimes related the sensitivities to them-
talking to their supervisors on their children’s behalf.
selves, “Of course there’s the tags, I mean you know if he
Additionally, some parents believed that in order for their
doesn’t like them then that’s fine, I don’t like them either… I
children to transition, they needed support from additional
get it… that’s not going to affect him I think in the long run.”
staff. Some parents discussed how a behavioral therapist in
Generally, parents felt that some sensory sensitivities were
the community would be beneficial to manage challenging
benign because they could be avoided and were within their
behaviors due to aversive stimuli. Other parents described
child’s control (e.g., not eating particular foods).
how a psychologist would be helpful, providing tools for
Many parents discussed how their children’s sensory
their child to implement when overwhelmed by sensory
sensitivities were integral to who their child was or were
situations. For children that struggled with self-awareness,
masked by more pressing challenges (e.g., anger manage-
parents believed that they or other staff could help their child
ment), making it difficult to articulate (at that particu-
build introspection and the ability to recognize when a sen-
lar point in the interview) how the sensory sensitivities
sory environment was becoming overwhelming. Finally, a
impacted the transition to adulthood. Other times, parents
subset of parents also felt that, in order for their children to
were not sure how their children’s sensory sensitivities
lead fulfilling lives, they needed to be surrounded by people
impacted their transition, sometimes because they had not
who knew and understood their sensory sensitivities. For
considered it before or sometimes because they did not
example:
have the opportunity to observe it. One parent explained,
… if [my daughter] was out shopping with someone “I would hope not, I would hope not. But there's only so
who doesn’t know her as well as we do, who may not much that I can see when I'm not with him. I don't know
be picking up with all of her nonverbal cues. I think it what happened when he was at his internship, I don't
would be an obstacle for sure because they wouldn’t know.”
be able to recognize and respond to it in the same way
or right away.
Physical Safety, Physical Health, and Hygiene
Lack of Impact
Just over half of parents (56%) also believed that their chil-
dren’s sensory sensitivity impacted their or others physical
All parents identified at least one sensory sensitivity that
safety, their health, and/or their hygiene. Regarding physical
would impact their child’s transition to adulthood. However,
safety, parents focused on if other people perceived their
56% of parents also discussed at least one sensory sensitivity
children’s sensory behaviors as threatening or dangerous
that would not be impactful, suggesting that the impact of
(e.g., screaming due to aversive stimuli, engaging in self-
the sensory sensitivity was sensory modality specific and
injurious behavior). In doing so, several parents mentioned
situation dependent. For example, one parent explained the
the police. For example:
impact of sound in relation to her son’s profession and liv-
ing environment, while also noting how food textures and I don’t want him to act non-autistic or anything, I don’t
visual stimuli would likely not impact him professionally care about that, but it’s really more about not scaring
or socially: people or just being safe. You’ll scare someone if you
walk up to a stranger and smell their hair, you know,
I don’t think the food textures and things like that are
they could call the police on you.
going to be a deal breaker for him. … from a noise
perspective, I could see it affecting… he would have Parents also described how their children would engage
to be in a quiet office and it’s going to affect where he in potentially harmful behavior to themselves if faced with
lives to a point ‘cause seeing when we were in Ireland aversive stimuli, such as jumping out of a moving car due to

13
Journal of Autism and Developmental Disorders

unpleasant odors, and to others, such as strangling someone noisy neighbors or loud traffic patterns; others described
for making them eat a particular food. Many parents felt specific sensory solutions, such as suggesting that their
that these safety risks, real or perceived, limited their chil- children only use paper plates to avoid the feeling of food
dren’s opportunities (e.g., jobs, group homes, community while washing dishes. Parents also talked about how their
acceptance). children modified their own living environments due to their
For health, regarding touch and bodily states, parents sensory sensitivities, such as keeping their blinds drawn in
described how their children would wear clothes inappropri- their room, and expected their children would maintain those
ate for their climate, making them susceptible to heat stroke habits in the future. Other parents described their children’s
or frostbite. For taste, parents expressed concerns that their desire to live independently and their confidence in their
children’s restricted diets could lead to diabetes and heart children to do so. A subset of parents mentioned climate
disease, as well as high cholesterol and blood pressure. In as well, explaining that their children found long clothing
the context of Covid-19, some parents discussed how their aversive, so warmer climates would be better. Some parents
children found face masks aversive and, in an effort to keep also expressed general sadness, worry, and fear about where
their children safe, parents had to restrict their activities. their children will live in the future, acknowledging that they
Finally, parents believed that their children’s sensory sen- themselves will not be around forever and that residential
sitivities negatively impacted their hygiene. For touch, par- homes in their geographical area could not meet their child’s
ents talked about their children’s sensitivity to toothbrush- needs.
ing leading to root canals and gum disease, as well as their
aversion to the feeling of soap causing a lack of cleanliness Self‑advocacy or Lack Thereof
and sanitation.
Half of the parents (50%) discussed how their children’s sen-
Living Environment sory sensitivities related to self-advocacy in their transition.
Parents’ comments ranged from hoping that their children
About half of parents (52%) discussed their children’s sen- would learn to advocate for their sensory needs to examples
sory sensitivities in relation to where they are living or might of their children self-advocating or being unable to do so.
live in the future. These discussion points related to their Further, many parents explained that self-advocacy laid the
children living within a family context (e.g., in their fam- transition’s foundation, for better (e.g., “…the key to inde-
ily’s home, carriage house, or second property), residentially pendence is self-advocacy. I think the key to her sensory
(e.g., in a group home), and independently (e.g., in their is self-advocacy, right, to get her sensory needs met, to get
own house, or apartment). In a family context, some parents her independence needs met”) or for worse (e.g., “I think
explained that because of their sensory sensitivities, their more just communication about it to others so that it doesn’t
children would never be able to live alone, without their isolate him… if he was able to do that regularly… it would
family, or without people who were highly familiar with make it much easier for him going forward to be an inde-
their child’s needs. Other parents discussed modifying their pendent adult”). In the context of aversive stimuli, several
home or their children’s room to meet their sensory needs. parents explained that their children’s lack of self-advocacy
Regarding group homes, parents explained that their was going to impede their independence because parents
children’s sensory sensitivities created additional param- were left guessing what was causing their children distress;
eters for selecting the right environment, “I mean that’s part they felt like they could not help or understand their chil-
of that major concern… ‘cause as far as I know, there are dren. For the children that were not already self-advocating
not very many or any programs that are dealing with sen- for themselves, some parents discussed how they were teach-
sory things like kids who are low functioning sensory kids.” ing their children this skill and the nuances of appropriately
This became challenging for parents when the availability advocating given a particular social context. Notably, some
of group homes was limited geographically and/or through parents explained that their child’s ability to advocate for
years long wait lists. their sensory needs was tied to their language and cognitive
In terms of living independently, parents explained how level. When describing interoception and pain, one parent
they were teaching their children to identify optimal living said:
environments for their individual needs, such as selecting
… when you don't have the language, I mean, how do
a corner unit in an apartment building to minimize noise.
you teach a child what hurts and what doesn’t? I mean
Some parents spoke more generally, explaining the sensory
in order to say, “oh yeah, this hurts!” you have to hurt
difficulties that could arise in living independently, such as
her. Who's going to do that? … So it's very difficult

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 Journal of Autism and Developmental Disorders

Table 7  Impacts of sensory sensitivities on the transition to adulthood by child characteristics

Category Independence level ABC-2 Hyperactiv- VABS-3 ABC Sound Hypersensitiv-
ity/Noncompliance ity Z-Score
< 4.31 ≥ 4.31 X2 ≤8 >8 X2 ≤ 69 > 69 X2 ≤ 0.09 > 0.09 X2
%a %a %b %c %d %e %b %c

1. Developmental or psychological 87.88 90.91 0.00 91.18 87.50 0.01 80.00 100.00 4.99 85.29 93.75 0.51
2. Interpersonal, community, or social situations 78.79 87.88 0.44 82.35 84.38 0.00 85.71 80.65 0.05 91.18 75.00 2.05
3. Sensory management 75.76 87.88 0.92 82.35 81.25 0.00 74.29 90.32 1.87 70.59 93.75 4.49
4. Profession—school, job, or vocational training 63.64 75.76 0.65 73.53 65.63 0.19 57.14 83.87 4.37 67.65 71.88 0.01
5. Interference of tasks or opportunities 72.73 63.64 0.28 64.71 71.88 0.13 62.86 74.19 0.52 52.94 84.38 6.13
6. Parental, caregiver, or staff support/involvement 69.70 63.64 0.07 58.82 75.00 1.28 62.86 70.97 0.19 76.47 56.25 2.19
7. Lack of impact 45.45 66.67 2.21 61.76 50.00 0.51 54.29 58.06 0.00 61.76 50.00 0.51
8. Physical safety, physical health, and hygiene 72.73 39.39 6.15 38.24 75.00 7.61 71.43 38.71 5.88 50.00 62.50 0.60
9. Living environment 51.52 51.52 0.00 47.06 56.25 0.25 57.14 45.16 0.53 50.00 53.13 0.00
10. Self-advocacy or lack thereof 42.42 57.58 0.97 58.82 40.63 1.52 42.86 58.06 0.97 41.18 59.38 1.52
11. Unclear/Other 12.12 12.12 0.00 11.76 12.50 0.00 11.43 12.90 0.00 17.65 6.25 1.08
a
Percentages are out of 33
b
Percentages are out of 34
c
Percentages are out of 32
d
Percentages are out of 35
e
Percentages are out of 31

when you don't have the cognitive ability to be able to Discussion

articulate exactly what's going on in your body.
The main goal of our study was to address a gap in the ASD
literature by asking parents how they believed their chil-
Research Question 2b: The Impact of Sensory dren’s sensory sensitivities impacted or will impact their
Sensitivities on the Transition to Adulthood by Child transition to independence. To contextualize their responses,
Characteristics we first established that, across all ages and in both daugh-
ters and sons, their children most frequently had auditory
The frequencies of the endorsed impacts did not differ by and tactile sensitivities. In their responses to key interview
age, anxiety, irritability, or touch hypersensitivity when questions, parents discussed how their children’s sensory
using median splits. Likewise, the frequencies of the sensitivities impact their ability to gain independence to var-
endorsed impacts did not differ by gender, ASD severity, ying degrees, primarily regarding developmental trajectories
or language level. and psychological influences, social situations, and sensory
Before correcting for multiple comparisons using the management. After correcting for multiple comparisons,
Benjamini–Hochberg method, the frequencies of endorsed there were no significant group differences regarding the
impacts did differ by independence level (X 2 = 6.15, endorsed impacts, suggesting that, in our sample, all parents,
p = 0.013), hyperactivity/noncompliance (X 2 = 7.61, regardless of their child’s profile, had similar concerns for
p = 0.006), and overall adaptive skills (VABS-3 ABC; how their child’s sensory sensitivities would impact their
X2 = 5.88, p = 0.015) for “Physical safety, physical health, transition to adulthood. Previous studies have demonstrated
and hygiene”. Impact frequencies also differed by over- that child characteristics, such as ASD symptom severity,
all adaptive skills for “Developmental or psychological” predict parental expectations (Holmes et al., 2016, 2018),
(X2 = 4.99, p = 0.026) and “Profession—school, job, or so it was surprising that we did not find group differences.
vocational training” (X2 = 4.37, p = 0.037). Likewise, impact However, as the first study to exclusively examine the con-
frequencies differed by sound hypersensitivity for “Sensory nection between sensory sensitivities and impending inde-
management” (X2 = 4.49, p = 0.034) and “Interference of pendence, this null result emphasizes the importance of this
tasks or opportunities” (X2 = 6.13, p = 0.013; see Table 7). intersection. Despite the heterogeneity of their children, all
However, upon correcting for multiple comparisons, no parents in our sample had similar concerns, suggesting that
group differences survived. this is an area worth investigating more deeply.

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Journal of Autism and Developmental Disorders

Our findings also converge with the extant literature. In transition period and found that parents believed that their
terms of the category “Profession—school, job, or voca- children’s transition was hindered by their challenges
tional training,” findings from our study track with findings with newness. This perspective maps onto the category
from the ASD sensory sensitivity literature. Howe and Stagg “Interference of tasks or opportunities” that we identi-
(2016) found that autistic adolescents felt that their sensory fied in our interviews. Some parents in our study shared
sensitivities led to classroom distractions and therefore that their children would not try new opportunities due to
them missing critical information. From the perspective of fear of aversive stimuli. For the category “Living environ-
caregivers, Cai and Richdale (2016) also reported sensory ment”, just as in our findings, other caregiver perspec-
sensitivities as distracting in educational contexts for their tive studies describe parents’ fears regarding maintaining
adult children. The category “Parental, caregiver, or staff their children’s current living situation and fears about
support/involvement” can be seen in the extant literature as what will happen to their children after they pass away
well. Schaaf et al. (2011) discussed the many ways in which (Cheak-Zamora et al., 2017; Cribb et al., 2019; Sosnowy
parents alter their family’s routine to accommodate their et al., 2018). Collectively, the similarities between the
young children’s sensory needs, just as the parents in our findings in our work and those in the sensory sensitivity
study describe supporting their children. Combined, these and transition literature speak to the importance of con-
findings triangulate the perspectives our participants shared, sidering antecedents in order to achieve a more nuanced
suggesting that sensory sensitivities’ negative educational understanding of lived experiences. Although these stud-
impact, as well as parental support in relation to sensory ies share the same parental perspectives, what differenti-
sensitivities, may be constant throughout development. ates our findings is the context for parental expectations.
Moreover, another salient theme between the extant lit- In their opinion, our participants have their perspectives
erature and our results revolves around the interconnected- because their children have sensory sensitivities.
ness of sensory sensitivities. From interviews with autistic
adults, Smith and Sharp (2013), Robertson and Simmons Limitations
(2015), and MacLennan et al. (2022) have proposed bidi-
rectional models in which sensory experiences interact with, Although it was a critical first step to establish that par-
moderate, and impact many aspects of lived experiences. ents believe their children’s sensory sensitivities impact
Our results similarly illustrate a “chain reaction”, in which their transition to adulthood, this study is not without its
because of their children’s sensory sensitivities, parents limitations.
report interference with tasks, physical and mental health Our participants were limited to individuals with reliable
consequences, and social isolation or avoidance. Likewise, internet access, as well as access to a smart phone, tablet,
our results also demonstrate moderating factors, which can or computer to complete the questionnaires and interview.
be most clearly seen in the “Lack of impact” category. In Participants were also limited to those who were at least
our study, the degree to which parents report that sensory conversationally fluent in English due to the language abili-
sensitivities impact the transition to adulthood appears to ties of the researchers. Finally, participants were restricted to
depend on context and sensory modality. Again, this speaks those who had the availability to join; while this is always a
to a potential developmental trend, in which sensory sensi- limitation of any study, it is particularly notable because this
tivities appear to be tightly connected to many daily experi- study took place during Covid-19. It raises questions about
ences through adolescence, young adulthood, and even into who was able to balance working at home with caregiving
later adulthood. and who had the mental bandwidth to add obligations to
When exploring the perspectives of caregivers and their existing responsibilities. Further, we excluded parents
autistic young adults learning to navigate the health care whose children did not live at home; it is possible that our
system, Cheak-Zamora et al. (2017) found that parents results do not generalize to children who live in a residential
worried that their child’s developmental age lagged facility or group home.
behind the responsibilities associated with their chrono- In terms of study design, we did not involve stakehold-
logical age. Similarly, our parents discussed how their ers (i.e., parents, autistic individuals) in the interview
children’s trajectory towards independence was damp- script development; doing so could have increased our
ened due to their sensory sensitivities. Likewise, Cheak- study’s trustworthiness (Elo et al., 2014) by ensuring
Zamora et al. (2017) discussed parental concerns regard- that the participants understood the interview questions
ing their children’s behavioral unpredictability. However, as they were intended. Additionally, the parental beliefs
rather than in the context of unexpected social behaviors reported in this study are only from one parent. 82% of
as discussed by our participants, this was reported in the participants indicated that they were not single; we do
context of social situation efficacy. Cribb et al. (2019) not know if these perspectives would be upheld by their
broadly examined parental and child perspectives at this partners. We also do not know if other family members

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 Journal of Autism and Developmental Disorders

or individuals in their child’s care team (e.g., therapists) Future Directions

would share these parental beliefs or if they would pro-
vide new insights. Some parents of minimally/non-verbal It is important to reemphasize that the results of this study
children shared that the AASP was challenging to com- only speak to parent perceptions; these beliefs are not
plete because many questions relied on their child being necessarily reality or the true experiences of their chil-
able to explain the antecedent for their behaviors, so par- dren, so a critical next step would be to interview young
ents reported making assumptions. adults themselves. Previous work has demonstrated the
feasibility of interviewing verbal autistic children and
Contributions adolescents about their sensory sensitivities (Kirby et al.,
2015), as well as autistic adults themselves (MacLen-
Despite these limitations, this study demonstrates nan et al., 2022; Robertson & Simmons, 2015; Smith
noteworthy implications. It is clear, from our sample & Sharp, 2013), which helps to establish methodologi-
of parents, that sensory sensitivities have a sustained cal precedent. Comparing the young adult perspectives
impact through childhood and into the transition to against the beliefs of their parents would facilitate a more
adulthood. In order to best support individuals with nuanced understanding of how the sensory sensitivities of
ASD and their families, our practices must start con- autistic individuals impact their transition to adulthood.
sidering how sensory sensitivities directly impact Further, having established that parents do believe that
young adults’ level of independence. As many parents their children’s sensory sensitivities impact their inde-
noted, the vocational training that we provide some pendence, a logical next step would be to determine what
autistic young adults, such as bagging or stocking gro- parents think would help at this intersection. Identifying
ceries, may be at odds with their sensory sensitivi- beneficial supports would then lay the groundwork for
ties. We must think creatively to provide more diverse developing such services. Moving forward, it may also be
vocational training that works with their strengths, not beneficial for sensory sensitivities to be actively consid-
against their sensitivities. Additionally, some parents ered in transition planning between service providers and
described challenges locating residential or group parents, such as by systematically discussing the young
homes suited to their children’s full set of needs, as adult’s sensory sensitivities by each modality and in spe-
many facilities did not have the expertise to support cific contexts to ensure that the transition plans (e.g., job
sensor y sensitivities. Again, we must expand the training) are truly optimizing independence and not exac-
available options and change our practices, increas- erbating sensory sensitivities.
ing awareness of how to support individuals with sen-
sory sensitivities, such that families do not experience Conclusions
additional barriers beyond those that already exist
(e.g., geographic limitations, long waitlists). Holisti- Our study used qualitative content analysis to interview
cally, this study calls for a shift in practices; for some parents of young adults with ASD to determine how their
autistic individuals, sensory sensitivities do not dis- children’s sensory sensitivities impact their transition
sipate, and parents are in need of resources as their to adulthood. From our interviews, the overwhelming
children age. This need should be not taken lightly; response was affirmative: sensory sensitivities do impact
throughout the interviews, parents expressed genuine the transition to independence. While this impact was not
concerns and fears for their children’s future due to child characteristic dependent, it was sensory modality and
their sensory sensitivities and the field should strive context specific. Moreover, for some families, the impact
to address their deep, not unfounded worries. One par- of their child’s sensory sensitivities was defining:
ent summarized the feelings of many:
I think [his sensory sensitivities] are the sky that we
I just never thought I’d be here [at] 24, still fight- walk under all the time. Sometimes it’s cloudy and
ing him over these crying babies. I just thought he awful and uncomfortable and then sometimes it's
would outgrow that [auditory sensitivity]… I’m sunny and warm, but it’s the sky we walk under all
living with this ticking time bomb all the time… the time. And sometimes it’s dark and sometimes it’s
I think examining the fact that this still exists in light, sometimes it’s stormy, sometimes it’s beautiful,
adults is really important… we spend a lot of time but it’s the sky.
thinking about sensitivities in kids and teaching
them skills of how to deal with all these and then for Supplementary Information The online version contains supplemen-
those that just never outgrow them, it’s like “What? tary material available at https://d​ oi.o​ rg/1​ 0.1​ 007/s​ 10803-0​ 22-0​ 5815-5.
Are they just supposed to live like this?”

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Journal of Autism and Developmental Disorders

Acknowledgements The authors would like to acknowledge Mat- Cai, R. Y., & Richdale, A. L. (2016). Educational experiences and
thieu Sherwood for his memory and spirit during this study. We would needs of higher education students with autism spectrum disorder.
also like to thank Jenna Sandler Eilenberg for her qualitative analysis Journal of Autism and Developmental Disorders, 46(1), 31–41.
advice, as well as Katia Bulekova, Meredith Pecukonis, and Karen https://​doi.​org/​10.​1007/​s10803-​015-​2535-1
Chenausky for their statistical guidance. Most importantly, the authors Cermak, S. A., Curtin, C., & Bandini, L. G. (2010). Food selectivity
would like to thank the families for their valuable time and invaluable and sensory sensitivity in children with autism spectrum disor-
insight. ders. Journal of the American Dietetic Association, 110(2), 238–
246. https://​doi.​org/​10.​1016/j.​jada.​2009.​10.​032
Author Contributions RMH designed and implemented the study, Cheak-Zamora, N. C., & Teti, M. (2015). “You think it’s hard now …
developed the coding scheme, coded and analyzed the data, and drafted It gets much harder for our children”: Youth with autism and their
the manuscript. EBJ was involved in developing the coding scheme, caregiver’s perspectives of health care transition services. Autism,
coding the data, and revising the manuscript. HTF was the principal 19(8), 992–1001. https://​doi.​org/​10.​1177/​13623​61314​558279
investigator of the Attention Training for Listening in Autism Study Cheak-Zamora, N. C., Teti, M., Maurer-Batjer, A., & Koegler, E.
and critically revised the manuscript. (2017). Exploration and comparison of adolescents with autism
spectrum disorder and their caregiver’s perspectives on transition-
Funding This work was supported by the Department of Defense ing to adult health care and adulthood. Journal of Pediatric Psy-
[W81XWH-18–1-0241]. chology, 42(9), 1028–1039. https://d​ oi.o​ rg/1​ 0.1​ 093/j​ pepsy/j​ sx075
Constantino, J. N., & Gruber, C. P. (2012). Social responsiveness scale,
Declarations second edition (SRS-2). Western Psychological Services.
Cribb, S., Kenny, L., & Pellicano, E. (2019). ‘I definitely feel more in
Conflict of interest The authors declare that they have no conflict of control of my life’: The perspectives of young autistic people and
interests. their parents on emerging adulthood. Autism, 23(7), 1765–1781.
https://​doi.​org/​10.​1177/​13623​61319​830029
Ethical Approval All procedures performed in the current study were Dudley, K. M., Klinger, M. R., Meyer, A., Powell, P., & Klinger, L.
in accordance with the ethical standards of the institutional and/or G. (2019). Understanding service usage and needs for adults with
national research committee and with the 1964 Helsinki declaration ASD: The importance of living situation. Journal of Autism and
and its later amendments or comparable ethical standards. This study Developmental Disorders, 49(2), 556–568. https://​doi.​org/​10.​
was approved by the Institutional Review Board at Boston University. 1007/​s10803-​018-​3729-0
Dunn, W. (2001). The sensations of everyday life: Empirical, theoreti-
Informed Consent Informed consent was obtained from all individual cal, and pragmatic considerations. American Journal of Occupa-
participants included in the study. tional Therapy, 55(6), 608–620. https://d​ oi.o​ rg/1​ 0.5​ 014/a​ jot.5​ 5.6.​
608
Elo, S., Kääriäinen, M., Kanste, O., Pölkki, T., Utriainen, K., & Kyn-
gäs, H. (2014). Qualitative content analysis: A focus on trustwor-
thiness. SAGE Open, 4(1), 2158244014522633. https://​doi.​org/​
10.​1177/​21582​44014​522633
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