Research in Autism Spectrum Disorders 87 (2021) 101826

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Research in Autism Spectrum Disorders

journal homepage: www.elsevier.com/locate/rasd

Painted with different brushes—An exploratory study of

psychological well-being and attitudes towards autism perceived
by adolescents with autism spectrum conditions and their mothers
Kinga Ferenc *, Katarzyna Byrka , Magdalena Ewa Król
Wroclaw Faculty of Psychology, SWPS University of Social Sciences and Humanities, Wroclaw, Poland

A R T I C L E I N F O A B S T R A C T

Keywords: Background: Given the high prevalence of mental health comorbidities in autism spectrum con­
Autism spectrum conditions ditions, the psychological well-being is one of the most pertinent issues in autism research, but it
Depression is encumbered with difficulties regarding its assessment in the ASC population and understanding
Psychological well-being
the causes behind the increased risk of problems.
Attitude towards autism
This study aimed to explore the subjective assessment of psychological well-being in adolescents
with ASC – whether it differs from the reports of their caregivers and which factors may be
important in shaping it. Specifically, we hypothesized that different ways of perceiving autism –
as a disorder or as a neurodivergence – may contribute to the way autistic adolescents feel about
their own well-being.
Method: We tested 27 dyads of adolescents with ASC and normal intellectual ability; and their
mothers. We assessed the child’s depressive symptoms and attitudes towards autism; we
controlled the child’s IQ and autism severity (by ADOS-2).
Results: We found large discrepancies between adolescent’s and mother’s reports of adolescent’s
depressive symptoms and their predictors. Higher maternal distress and lower autism severity
predicted an increased level of depressive symptoms in the child, only in the mother’s report.
Attitude towards autism was not a significant factor in predicting the child’s depressive symp­
toms, but it leaned toward significance in the child’s self-assessment.
Conclusions: Given the differences between adolescents and maternal perspectives, the subjective
experiences of adolescents with ASC should be taken into account to a greater extent. It is worth
exploring whether adolescents with ASC might benefit from perceiving autism as a
neurodivergence.

1. Introduction

1.1. The significance of the study

Co-occurring mental health issues are common in the Autism Spectrum Conditions (ASC) population (Hollocks et al., 2019; Hudson
et al., 2019), leading to lower quality of life (Robertson, 2009; Vannucchi et al., 2014) and increased risk of suicidal attempts and

* Corresponding author at: Wroclaw Faculty of Psychology, SWPS University of Social Sciences and Humanities, Aleksandra Ostrowskiego 30b,
50-505, Wroclaw, Poland.
E-mail address: kferenc@swps.edu.pl (K. Ferenc).

https://doi.org/10.1016/j.rasd.2021.101826
Received 2 October 2020; Received in revised form 26 April 2021; Accepted 25 June 2021

Available online 7 July 2021

1750-9467/© 2021 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).
 Research in Autism Spectrum Disorders 87 (2021) 101826

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ideation (Zahid & Upthegrove, 2017). Therefore, a more thorough understanding of the factors contributing to the psychological
well-being of individuals with ASC is much needed (Crane et al., 2019). It is also worth noting that autistic adults see improving mental
health as the most urgent research question to be addressed (Cusack & Sterry, 2016).
At the same time, the perception of autism has changed over time. Currently, the neurodiversity paradigm, where autism is viewed
as one of the possible variants of human neurology rather than a developmental disorder (Singer, 1999), gains more ground in our
understanding of the autism spectrum (Happé & Frith, 2020). However, understanding autism is not only crucial for academic or
research purposes, but also impacts the way individuals with ASC and their families view themselves, and as such, may improve or
decrease their well-being (Cage et al., 2018; Cresswell & Cage, 2019; Hebert & Koulouglioti, 2010; Whitehead et al., 2015). Therefore,
this study aimed to investigate how different ways of perceiving autism by autistic individuals themselves and their mothers may relate
to their psychological well-being.

1.2. Adolescents with ASC are at increased risk of depression

The risk of depression in the population with ASC increases in adolescence, similar to the patterns observed in the general pop­
ulation (Pezzimenti et al., 2019). However, in the ASC population, the risk is generally much higher (Hudson et al., 2019). Given that
its prevalence is related to higher IQ (Hollocks et al., 2019), adolescents without intellectual disability are considered to be at
extremely high risk (Pezzimenti et al., 2019), with prevalence estimated between 50–70 % (Joshi et al., 2013; Lugnegård et al., 2011).
Moreover, there is some evidence that depressed adolescents with ASC are likely to have mental health issues in adulthood (Gotham
et al., 2015) and worse adult outcomes (McCauley et al., 2020), which shows the importance of recognizing and addressing these issues
at younger ages (Pezzimenti et al., 2019).

1.3. Differences between the mother’s and the child’s self-assessment

Previous research shows that individuals with ASC may see their own psychological well-being differently to their parents. It is well
established that, in typically developing adolescents, the agreement between self-report and parent’s report of adolescent’s mental
health issues is low to moderate (Achenbach et al., 1987; De Los Reyes et al., 2015). These discrepancies between adolescent’s
self-report and parent’s report have also been confirmed in the ASC samples (Blakeley-Smith et al., 2012; Jepsen et al., 2012; Keith
et al., 2019; Pisula et al., 2017; Stratis & Lecavalier, 2015). But, the pattern of discrepancies appear to be different in the ASC pop­
ulation. For example, there is some evidence that adolescents with ASC tend to be more optimistic than their parents about their
emotional problems, while children from typical populations tend to be more pessimistic (Blakeley-Smith et al., 2012; Pisula et al.,
2017).
Such discrepancies have also been found in the child’s self-reports and parent’s reports of quality of life of autistic children and
adolescents (for a review, see Ikeda et al., 2014). In addition to that, Hong and colleagues (2016), in a sample of autistic adults, found
that predictors of one’s own and maternal assessment of an individual’s quality of life were also different. Based on self-reports,
subjective factors like perceived stress and having been bullied frequently were associated with quality of life, while in the
maternal report, the level of independence in daily activities and physical health turned out to be significant predictors of the in­
dividual’s quality of life as assessed by their mothers. Given that the child’s perspective may substantially differ from the parent’s
perspective, comparing the two may provide a more accurate picture of the child’s well-being (Keith et al., 2019).
Several factors were found to contribute to the level of discrepancies between autistic adolescents’ and mothers’ reports of a child’s
mental health, including child’s age, gender, IQ (Stratis & Lecavalier, 2015), and increased parenting stress (Ooi et al., 2016). The high
level of discrepancies may also be explained by some of the ASC symptoms related to mindreading and identifying emotions of others
and one’s own (Pisula et al., 2017).

1.4. Differences in the experience of autism between individuals with ASC and their mothers

The understanding of autism among autistic individuals and their families is not only a passive reflection of information passed on
to them from different sources such as books or clinicians. On the contrary, it is an active and subjective process of making sense of
their situation. According to Ueda & Okawa (2003), this subjective dimension of disability (also called ‘the subjective experience’) is
essential for the psychological well-being of the disabled person.
Even though they are rarely directly compared, attitudes toward autism of individuals with ASC themselves and their parents may
differ quite substantially. For example, individuals with ASC may perceive some of the symptoms of autism as positive, like stereotyped
or repetitive motor movements (‘stimming’) (Kapp et al., 2019), the ability to hyperfocus or their attention to details (Russell et al.,
2019). Moreover, autistic adults may view their social life more positively than their parents (Moss et al., 2017).
Milton and colleagues (2018) suggest that misunderstandings between autistic and non-autistic people work in both ways. Studies
(Heasman & Gillespie, 2018; Sheppard et al., 2016) show that not only autistic people struggle to read the minds of neurotypical
people, but also neurotypical people struggle to read the minds of autistic people. This might imply that the subjective experience of
autistic people may not be easily understood by their parents.
However, to the best of our knowledge, the perception of autism has not been tested in dyadic studies designed to assess both
individuals with ASC self-reports and their mothers’ reports.

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1.5. Subjective perception of autism and its role in psychological well-being

Autism can be perceived within two different approaches: the medical model of disability and the neurodiversity paradigm
(Baron-Cohen, 2017). The medical model describes autism as a medical condition or developmental disorder, characterized by several
deficits. The assumption is that there is a right way of developing neurologically and that autism is a deviation from the typical stages
of development and, as such, would benefit from treatment. Conversely, the neurodiversity paradigm (Singer, 1999) describes autism
in terms of a neurodivergence, as an alternative way of thinking or a variant of the human neurology. The assumption is that there is a
natural diversity in human neurological development, and autism is one of the possible developmental paths (Baron-Cohen, 2017;
Bluhm & Chapman, 2019; Chapman, 2020; den Houting, 2018; Kapp et al., 2013). Thus, what individuals with ASC need, is finding the
environmental niche right for them by minimizing barriers, maximizing potential, and optimizing person- environmental fit (Lai et al.,
2020). Both of these paradigms can be observed at the level of the individual, either as attitudes towards their autism (Griffin & Pollak,
2009; Humphrey & Lewis, 2008) or attitudes towards autism held by the parents (Cascio, 2012). Divergence of attitudes towards
autism may be more prevalent among some sub-types of ASC. For example, neurodiversity is related to autism activism created mainly
by individuals without intellectual disability (Hughes, 2021; Jaarsma & Welin, 2012).
There is emerging research exploring the relationship between psychological well-being and attitudes towards autism in autistic
individuals in terms of autistic identity (Botha & Frost, 2020; Cooper et al., 2017; Cooper et al., 2021; Cresswell & Cage, 2019) and
autism acceptance (Cage et al., 2018). But, to the best of our knowledge, a direct link between the psychological well-being and at­
titudes towards autism, in terms of personal definition of autism, has not yet been studied. Thus, our study aimed to fill this gap,
investigating the role of attitudes towards autism as a medical condition or as a neurodivergence in the psychological well-being of
adolescents with ASC.
Autism acceptance is an individual feeling of being accepted or appreciated as an autistic person (Cage et al., 2018). Autism identity
describes whether individuals feel that autism is a core part of their identity or whether they prefer to distance themselves from the
diagnosis (Cooper et al., 2017; Cooper et al., 2021). Personal definition of autism can be explained as the subjective perception of what
autism is – in this study we considered specifically taking a perspective based rather on the medical model of a disability or the
neurodiversity movement.
Research has shown that psychological adjustment to the child’s diagnosis may act as a protective mechanism for maternal psy­
chological well-being (Bekhet et al., 2012; Da Paz et al., 2018; Weiss et al., 2015). Autism acceptance (Da Paz et al., 2018) and holding
more optimistic beliefs about autism, e.g. more hope for the child’s future development or attributing the cause of autism to fate
(Hebert & Koulouglioti, 2010) contributed to higher maternal well-being. Autism acceptance was related to better mental health
outcomes also in autistic adults (Cage et al., 2018). As the neurodiversity paradigm accumulates a more optimistic beliefs and more
accepting attitude, we hypothesized that adopting this definition of autism as own would be related to the higher well-being of both
mother and the child.

1.6. Aims of the current study

The first purpose of this study was to explore the subjective experience of psychological well-being in adolescents with ASC. We
tested discrepancies between the adolescent and maternal reports of the child’s depressive symptoms and their predictors. We hy­
pothesized that there would be discrepancies between the mother’s and child’s reports. We expected to observe different factors
predicting the mother’s or child’s report of a child’s depressive symptoms. The second purpose was to examine the predictive value of
the attitudes towards autism on the depressive symptoms of adolescents. We assessed mother’s and child’s attitudes towards autism
and investigated the relationship between them. Then, we include it as a factor predicting depressive symptoms in a child. We expected
that seeing autism as a neurodivergence rather than as a disorder will predict a higher level of psychological well-being in the child

2. Method

2.1. Participants

The sample consisted of twenty-seven dyads: twenty-seven adolescents with ASC diagnoses and their mothers. Adolescents ages
ranged from 12 to 16 (M = 13.70, SD = 1.72), and 85.19 % of them were male.
All adolescents were independently diagnosed by a psychiatrist before the study, based on the criteria outlined in the ICD-10. The
mean age of the diagnosis was M = 7.28 (SD = 3.29). All diagnoses were confirmed during the study using module 3 or 4 of the Autism
Diagnostic Observation Schedule 2 (ADOS-2; Lord et al., 2000). In our sample, five participants met the cut-off for the autism spectrum,
and twenty-two met the cut-off for autism. The minimum ADOS score for autism spectrum diagnosis is 7 in both modules 3 and 4, while
for the classification of autism, the minimum is 9 in module 3 and 10 in module 4. ADOS scores ranged from 7 to 23 (M = 13.19,
SD = 4.57). Based on the mother’s reports, thirteen of the adolescents obtained a clinical diagnosis of other developmental disorders;
six received a co-occurring diagnosis of ADHD, eight of specific learning disorders, and one was diagnosed with dyspraxia. One of the
adolescents was diagnosed with depression and one with an oppositional defiant disorder.
The exclusion criteria for the adolescents were neurological and genetic conditions and intellectual disability, defined as a full-scale
IQ score below 70 in the Wechsler Intelligence Scale for Children-Revised (WISC-R, Wechsler, 1974). The minimum full-scale IQ score
in the sample was 76; therefore, all participants were included.
The other half of the sample consisted of twenty-seven mothers aged from 33 to 56 (M = 45.37, SD = 5.29). Education levels

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among mothers were as follows: 59.3 % (n = 14) graduated university and 40.7 % (n = 13) graduated high school. We included in the
study only mothers, not fathers or other caregivers.
The research was prospectively reviewed and approved by the faculty research ethics committee, in accordance with the Decla­
ration of Helsinki. Informed written consent to take part in the study was obtained from all mothers on their behalf, as well as on behalf
of their children. Additionally, all adolescents had given oral consent.

2.2. Procedure

Participants took part in all of the procedures during two visits to the laboratory. At the first visit, children took part in ADOS
assessment and filled the questionnaires with the research assistant’s support. Mothers filled the questionnaires at the same time in a
different room. At the second visit, children took part in the intelligence assessment. The study was a part of a larger research project
investigating perception in autism.

2.3. Measures

2.3.1. Children’s depressive symptoms (Children’s Depression Inventory. Second Edition, CDI-2)
CDI-2 (Kovacs, 1992), in Polish adaptation by Wrocławska-Warchała and Wujcik (2017), provides a standardized assessment of
depressive symptoms in children and adolescents ages 7− 18. Higher total scores indicate higher depressive symptoms in a child. To
obtain data from both adolescents and their mothers, we used two protocols of the CDI-2: the child’s self-report (with 28 items) and the
parent’s report (with 17 items). Both protocols show the child’s overall depressive symptoms (as a total score) in two subscales:
emotional problems and functioning problems. During CDI assessment, adolescents and mothers evaluated the child’s emotional
states. Adolescents chose one of 3 sentences in each of the 28 items (e. g. ‘I don’t feel lonely’, ‘I often feel lonely’, ‘I feel lonely all the
time’) to assess which of the statements describe them most accurately over the period of the last 2 weeks. Mothers evaluated how
often they observe each behavior or emotional state in a child over the past 2 weeks by rating each of the 17 statements (e.g. ‘He/she
seems lonely’) on a 4-point scale (from ‘never’ to ‘almost always or always’). The ratings were assigned numerical values providing the
total score. Then, in both protocols, the total scores were converted to t-scores, normed for age and sex. CDI Total t-scores range from
21 to 79, with 5 categories: low (below 28–39), average (40–59), elevated (60–64), high (65–69), or very high (70–79) depressive
symptoms. Recommended cut-off score for screening for depression is a t-score above 60 (Wrocławska-Warchala et al., 2017). CDI-2 is
a widely used assessment of depression in clinical populations, including the ASC population (Mazzone et al., 2013). The internal
consistency of the Polish adaptation was good for the child’s self-report scale (Cronbach’s alpha, α = 0.84 –0.87) and the parent’s
report scale (Cronbach’s alpha, α = 0.82 –0.86). In our sample t-scores ranged from 36 to 66 (M = 54.89, SD = 7.52) for child’s
self-report protocol and from 52 to 79 (M = 68.26, SD = 8.46) for mother’s report protocol.

2.3.2. Child’s and mother’s attitude towards autism (Attitude Towards Autism Questionnaire, ATA-Q)
To the best of our knowledge, there is no pre-existing measure of attitudes towards autism in autistic individuals or the parental
attitude towards their child’s autism. Attitude Towards Autism Questionnaire (ATA-Q) was developed to measure attitude towards
autism on a scale from perceiving autism as a disorder (medical model of disability) to perceiving autism as a neurodivergence (social
model of disability) in two protocols: for mothers (with 10 items) and children (with 6 items). In both protocols, higher total scores
indicate a stronger neurodiversity attitude, while lower total scores indicate a stronger medical attitude. The child’s self-report pro­
tocol was developed based on the ATA-Q for parents, but the statements were simplified, and the format was changed. The simplified
version enables obtaining adolescent’s self-report; however, direct comparison between the mother’s and child’s scores is limited.
Mothers rated their attitude by choosing to what extent they agree with each of 10 statements (e.g. ‘I see my child’s autism as a gift’),
on a 5-point Likert scale (from ‘I strongly disagree’ to ‘I strongly agree’). Adolescents chose one of four options (‘I am a little bit like
this’ or ‘I am definitely like this’) to state which of 2 opposite sentences (e.g. ‘Some people are proud of being autistic BUT other people
are ashamed of having autism’) described them the most; the format was based on Harter’s self-report instruments for children (e. g.
Harter, 1982). Scores range from 10 to 50 for the mother’s protocol and from 6 to 24 for the child’s protocol. ATA-Q showed excellent
internal consistency (Cronbach’s alpha, α = .93) in a large group of mothers (n = 372). In a current sample, the internal consistency
was excellent for mothers (Cronbach’s alpha, α = .93) and good for adolescents (Cronbach’s alpha, α = .87), suggesting that both
groups rated their attitudes consistently and reliably. In this sample ATA-Q scores ranged from 10 to 46 (M = 27.22, SD = 10.34) for
the mother’s protocol and from 7 to 24 (M = 15.48, SD = 4.48) for the child’s protocol. For further details regarding the development
of ATA-Q as well as all the items, please see Appendix A.

2.3.3. Autism severity (Autism Diagnostic Observation Schedule 2, ADOS-2)

The ADOS (Lord et al., 2000) is a standardized, validated instrument for the assessment of autism spectrum conditions, considered
as the gold-standard diagnostic tool for ASC. This assessment elicits symptoms of autism in four areas: social interaction, communi­
cation, play, and repetitive behaviors. The ADOS-2 includes four modules, differentiated by individual’s age and language functioning.
Module III (for verbally fluent children) was utilized for 25 participants, and Module IV (verbally fluent adults) for 2 participants in this
study. During ADOS-2 assessment, children took part in a semi-structured interview with social and toy-based probes, led by a trained
clinician. Higher ADOS scores indicate more symptoms of autism, with the cut-off points for the autism spectrum for autism. Higher
algorithm scores index greater symptom severity (ranged from 1 to 10). The reliability and validity of the ADOS are generally strong
(Lord et al., 2000). ADOS algorithm scores in our sample ranged from 4 to 10 (M = 7.07, SD = 2.00).

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2.3.4. Cognitive level (Wechsler Intelligence Scale for Children-Revised, WISC-R)

The WISC-R is a standardized test of cognitive level for children ages 6–16. It contains a measure of 10 different cognitive abilities.
During WISC-R assessment, children took part in series of cognitive tasks with a clinician. The scoring procedure results in scores for
Verbal IQ, Performance IQ, and Full Scale IQ. The IQ scores have a mean of 100 and a standard deviation of 15. The WISC-R is
extremely popular that is also commonly used in autism research. The tool has acceptable convergent reliability (Wechsler, 1974).
Full-scale IQ scores in the sample ranged from 76 to 147 (M = 107.48, SD = 16.70).

2.3.5. Maternal psychological distress (Depression Anxiety and Stress Scales, DASS-21)
The DASS-21 is a self-report scale measures negative emotional states of depression, anxiety, and stress (Lovibond & Lovibond,
1995). DASS-21 consists of 21 items, and it is the abbreviated version of DASS, consisting of 42 items. It contains 3 subscales:
depression, anxiety, and stress. The total score can be used as a measure of psychological distress (Henry & Crawford, 2005), with
higher total scores indicating greater psychological distress. Mothers rated 21 statements (e.g. ‘I found it difficult to relax’) on a 4-point
scale (from ‘did not apply to me at all’ to ‘applied to me very much or most of the time’), assessing the frequency or severity of their
emotional states over the past two weeks. Scores for each scale are summed and then multiplied by 2. Subscales’ score range from 0 to
42, and total score range from 0 to 126. The DASS-21 has shown good internal consistency - Cronbach’s alpha 0.94, 0.87, and 0.91 for
the depression, anxiety, and stress subscales respectively (Antony et al., 1998), convergent validity, and discriminant validity (e. g.
Henry & Crawford, 2005). In our sample internal consistency was good for the scales (Cronbach’s alpha. α = 0.76, 0.86 and 0.78 for
the depression, anxiety and stress subscales respectively) and for the total score (Cronbach’s alpha, α = 0.90). Total scores ranged from
2 to 84 (M = 37.93, SD = 20.96).

2.3.6. Demographic questionnaire

Mothers completed information on demographic variables, which contained questions about the child’s diagnosis, for the purpose
of inclusion in the study; as well as the child’s (age, gender) and the mother’s characteristics (age, education level).

3. Results

3.1. Depressive symptoms in the child according to the child and the mother

The majority of mothers reported depressive symptoms above the screening cut-off points, which indicated a clinically significant
risk for depression. According to the maternal reports, 78 % of adolescents scored above the cut-off score. But, in the case of the child’s
self-reports, this occurred only in a 19 % of children (Wrocławska-Warchala et al., 2017).
As predicted, mothers tended to identify more depressive symptoms in their children than the children themselves (see Table 1).
Additionally, we found that mother’s reports and child’s self-reports were not significantly correlated. Independent samples t-tests
comparing the mother’s report and the child’s self-report indicated significant difference with large effect size.
(Table 1)

3.2. Attitude towards autism according to the child and the mother

Attitudes towards autism in a child and a mother were normally distributed, but more than a half of the children (59.26 %) and
around half of the mothers (51.85 %) scored above the mean in ATA-Q (for adolescents M = 15.46, SD = 0.86, for mothers M = 27.22,
SD = 1.99) which indicates that both groups displayed attitudes closer to the neurodiversity end of the scale. The correlation between
the attitude towards autism adopted by the mother and the attitude towards autism adopted by the child was not statistically sig­
nificant (r = .27, p = .18), but given the relatively high Pearson correlation coefficient, it is possibly due to the modest sample size.

3.3. Predictors of depressive symptoms in adolescents

We performed a hierarchical multiple regression analysis to explore predictors of depressive symptoms in adolescents with ASC.
Specifically, we aimed to examine the predictive value of the attitude towards autism questionnaire, when all relevant child’s

Table 1
Level of adolescents depressive symptoms in the child’s self-report and the mother’s report (n = 54).
Mother’s report Child’s self-report

Variable M SD M SD R t d

Depressive symptoms 68.26 8.46 54.89 7.52 .05 6.30** 1.6

Emotional problems 66.85 8.46 51.78 7.80 − .04 6.58** 1.8
Functional problems 65.15 9.68 56.56 9.06 .25 3.88* 0.9

Note. The table shows means of standardized t-scores (M = 50, SD = 10) on the CDI-2 full scale (depressive symptoms) and subscales (emotional
problems and functional problems).
*
p < .05.
**
p < .01.

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characteristics were controlled for.

As the child’s self-report and the mother’s report of adolescent depression significantly differed, we explored predictors of the
adolescent’s depressive symptoms in two models: with the child’s self-report as the outcome variable (the child’s perspective) and with
the mother’s report as the outcome variable (the mother’s perspective). Both models considered the same set of predictors introduced
in the three steps: (1) attitudes towards autism reported by the mother or by the adolescent, (2) autism severity measured by ADOS-2,
(3) child’s characteristics: age, gender, full IQ, (3) psychological distress in the mother. The number of predictors in the model is high
given our modest sample size, but according to Austin & Steyerberg (2015), even models with two participants per variable result in
the adequate estimation of regression coefficients. The results of the hierarchical regression analysis are presented in Table 2.
As expected, different predictors showed different effects in each model. When predicting mother’s assessment of a child’s
depressive symptoms, we found that higher autism severity (measured using ADOS-2) predicted lower level of depression and higher
psychological distress of the mother predicted a higher level of depression. Any of the factors did not predict child’s depression in the
self-report. The child’s attitude towards autism was leaning towards significance, but only when considered the adolescent’s self-report
of both the attitude towards autism and the depressive symptoms.
(Table 2)

4. Discussion & implications

In this study, we explored the subjective experience of autism of psychological well-being in adolescents with ASC. First, we wanted
to test whether mothers and their children with ASC may have different perceptions of the child’s psychological well-being. Next, we
assessed their attitudes toward autism on a scale ranging from attitudes based on the medical model of disability (autism as a
developmental disorder) to attitudes based on the neurodiversity paradigm (autism as a neurodivergence). Finally, we tested the
predictive value of attitude towards autism held by the child and the mother on the child’s psychological well-being, controlling for
autism severity, child’s characteristics (age, gender, IQ), and maternal distress.

4.1. Assessment of depressive symptoms in the child by the child and the mother

We found that mothers of adolescents with ASC tended to report higher severity of depressive symptoms in their children than
children themselves. At the same time, we found no statistically significant correlation between their assessments. These results are
consistent with previous reports that the child’s and maternal assessment of the child’s depressive symptoms may differ significantly
(Blakeley-Smith et al., 2012; Jepsen et al., 2012; Keith et al., 2019; Pisula et al., 2017; Stratis & Lecavalier, 2015). This may have
important consequences for the assessment of depression and, more generally, psychological well-being in children and youth with
ASC.
While multi-informant report is widely used when assessing adolescents in the general population, in case of autism spectrum
conditions, especially when underage individuals are concerned, parents are usually the primary sources of information about their
children, both in research and in clinical settings (Ikeda et al., 2014; Keith et al., 2019). However, as our results demonstrate, the

Table 2
Results of linear regression analysis predicting the adolescent’s depressive symptoms in the child’s self-report and in mother’s report (n = 54).
child’s self-report mother’s report

Variable B SE (B) Wald χ2 p 95 % CI (B) B SE (B) Wald χ 2 P 95 % CI (B)

Step 1
Intercept 60.98 5.05 [51.08, 70.88] 68.36 4.58 [59.39, 77.33]
Attitude towards autism − .39 .31 1.57 .21 [-1.01, 0.22] − .00 .16 .00 .98 [-0.31, 0.31]
Step 2
Intercept 68.96 6.83 [55.57, 82.35] 76.68 6.62 [63.70, 89.66]
Attitude towards autism − .40 .30 1.71 .18 [-0.99, 0.18] .03 .15 .04 .84 [-0.27, 0.33]
Autism severity − 1.11 .67 2.71 .10 [-2.42, 0.21] − 1.31 .78 2.78 .10 [-2.84, 0.23]
Step 3
Intercept 50.74 15.13 [21.08, 80.40] 112.91 16.45 [80.67, 145.15]
Attitude towards autism − .52 .31 2.88 .09 [-1.13, 0.08] .08 .15 .27 .60 [-0.22, 0.38]
Autism severity − .83 .68 1.46 .28 [-2.16, 0.51] ¡1.81 .76 5.63 .02* [-3.31, -0.31]
Age .63 .75 .70 .40 [-0.85, 2.11] − 1.20 .83 2.06 .15 [-2.83, 0.44]
Gender (female) 3.73 3.72 1.00 .32 [-3.57, 11.03] − 3.57 4.05 .78 .38 [-11.52, 4.38]
Full IQ .08 .09 .93 .34 [-0.09, 0.25] − .16 .10 2.74 .10 [-0.35, 0.03]
Step 4
Intercept 60.21 18.62 76.15 17.50 [41.86, 110.45]
Attitude towards autism − .49 .31 2.57 .11 [-1.09, 0.11] .16 .13 1.57 .21 [-0.09, 0.42]
Autism severity − .97 .70 1.94 .16 [-2.33, 0.39] ¡1.39 .65 4.58 .03* [-2.67, -0.12]
Age .37 .81 .21 .65 [-1.21, 1.95] − .12 .77 .02 .88 [-1.62, 1.38]
Gender 2.95 3.79 .61 .44 [-4.47, 10.37] − .53 3.51 .02 .88 [-7.41, 6.35]
Full IQ .06 .91 .37 .54 [-0.12, 0.23] − .09 .08 1.10 .29 [-0.25, 0.08]
Mother’s distress − .06 .07 .73 .40 [-0.20, 0.08] .23 .07 11.57 .00* [0.10, 0.36]

Note. *p < .05, **p < .01. Predictors significant at p < .05 are marked in bold.

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parental point of view does not necessarily reflect subjective psychological well-being or perception of the child. The common reason
for using the parental report and not using the child’s report is the child’s weaker ability to reflect on and to communicate their mental
states due to their cognitive and social deficits. However, there is evidence that adolescents can provide valuable self-reports (Ozsi­
vadjian et al., 2014; Sheldrick et al., 2012). In summary, we believe that adolescents with ASC have a valid perspective on their
psychological functioning, despite the presence of potential difficulties in expressing it.
It could be argued that in the assessment of psychological well-being specifically, the subjective component reflecting the actual
state of mind of the assessed person is a crucial and, perhaps, even its most important part. Subjective perception of their well-being by
the children themselves should not be dismissed.
Furthermore, as expected, we found different predictors of a child’s depressive symptoms when considering a mother’s report than
when considering a child’s self-reports. Specifically, mothers saw less depressive symptoms in adolescents who exhibited more severe
symptoms of autism. In other words, higher autism severity (measured by the ADOS score) significantly predicted a lower level of
depressive symptoms in the child in the maternal report. Our results may point to a lower level of depressive symptoms in more
severely autistic individuals (Hudson et al., 2019). However, this may also mean that recognizing depressive symptoms in children
with more severe autism might be more challenging. One of the main reasons why clinicians may struggle to diagnose depression in
ASC appropriately is because of communication deficits. When autism symptoms related to communication are more severe, the in­
dividual may find it difficult to express their own emotional states (Chandrasekhar & Sikich, 2015). Moreover, autism symptoms may
overlap depression symptoms (Pezzimenti et al., 2019), and depressive symptoms may present atypically in the autistic population
(Chandrasekhar & Sikich, 2015). These issues lead to challenges in diagnosing depression in the ASC population by clinicians, but
perhaps it could also contribute to missing depressive symptoms in a child by parents or teachers.
Higher maternal emotional distress predicted higher depressive symptoms in the child. This finding is consistent with previous
evidence that increased parental stress relates to more discrepant caregiver-child reports (Ooi et al., 2016). Mothers with a higher level
of emotional distress may perceive the situation of their child as worse.
The attitude towards autism closer to neurodiversity (autism as a variant of the human neurology) did not show a significant effect
in predicting the level of a child’s depressive symptoms. However, the P-value of attitude towards autism was low (p = 0.09) when
predicting the child’s self-report of depressive symptoms. Given the small sample size in this study, this shows that this hypothesis may
be worth investigating further.
Due to the exploratory nature of the study, the results should be treated with caution. However, these results have several possible
implications for clinical practice. First, as self-report is a key source of information about a child’s subjective well-being, it should be
carefully considered while diagnosing a child’s emotional state as well as therapy planning. Second, we begin to understand the
complex and bidirectional influences family members with ASC have on other family members (Chandrasekhar & Sikich, 2015). Thus,
the awareness that higher autism severity and higher distress in the mother may affect the assessment of the child’s emotional states by
the mother can be useful in understanding family situation. Finally, or result suggests that it’s worth exploring if discussing a child’s
attitude towards autism would lead to mental health outcomes.

4.2. Limitations of the study

The most significant factor in our study was its small sample size, especially in relation to the number of variables we measured.
This is a very pertinent problem in research on clinical populations in general, where difficulties with recruitment, participant het­
erogeneity, and resource- and labor-intensive psychometric assessment often preclude recruitment of large, homogenous samples
(Tackett et al., 2017). In our case, including child-mother dyads posed an additional challenge in recruiting both mother and child.
Small sample size decreases the power of the study and leads to higher variability in the sample, which may lead to bias. As a result,
our sample size limits the strength of our conclusions, and for this reason, this study should be seen as exploratory in nature. However,
while our sample size was modest, it has been carefully controlled. We confirmed all autism diagnoses and measured the level of
cognitive functioning using high-quality psychometric tools, which has enabled us to control for the most critical confounds in this
context - the effect of cognitive functioning and autism severity. Additionally, also including both mother’s report and a child’s report
set additional control of the key variables.
Additionally, our sample consisted only of mothers. As fathers may have different patterns of psychological adjustment to the child
diagnosis than mothers (Kayfitz et al., 2010; Pozo et al., 2014), we assumed that also their attitudes towards autism might differ from
maternal attitudes. Due to the limited resources, we were not able to include both parents. However, fathers may have different at­
titudes towards autism or different views on their child’s well-being, it would therefore be desirable to include them in future studies,
to gain a more comprehensive picture of the experience of the family. Future investigation on the experience of autism in triads
child-mother-father would be needed.
Another important limitation is the exclusion of children with intellectual disability. Unfortunately, autism research is increasingly
focusing on participants with lower autism symptoms and higher intelligence (Stedman et al., 2019; Tager-Flusberg & Kasari, 2013). In
our case, this exclusion was necessary because our participants with ASC had to be able to assess their attitude towards autism or
depressive symptoms, which required a relatively high level of cognitive and social skills. However, mothers of children more severely
affected by autism may have very different perceptions and attitudes towards autism, which we were unable to investigate in this
study. Also, adolescents with more severe autism symptoms and lower intelligence may have different experiences of autism and their
own psychological well-being. Due to the lack of adequate assessment tools and their communication and social deficits, accessing the
experience of this group is very difficult. For this reason, our conclusions are adequate only to the subgroup of children with ASC, and it
should not be generalized to the situation of adolescents and mothers on the whole spectrum.

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5. Conclusion

We found significant differences between the mother’s and the child’s assessment of the child’s psychological well-being and
different factors predicting their respective assessments of the child’s psychological well-being. From the mother’s point of view, the
mother’s psychological distress and the child’s autism severity were significant. From the child’s point of view, the child’s attitude
towards autism was leaning towards significance.
Taken together, these results show that adolescents with ASC have their own unique assessment of their situation. In consequence,
to address their well-being, it is vital to take their point of view into account. We also conclude that it is worth exploring whether
adolescents with ASC might benefit from perceiving autism as a neurodivergence rather than as a disorder.

CRediT authorship contribution statement

Kinga Ferenc: Conceptualization, Methodology, Investigation, Formal analysis, Writing - original draft, Writing - review & editing,
Project administration. Katarzyna Byrka: Conceptualization, Methodology, Formal analysis, Writing - review & editing. Magdalena
Ewa Król: Conceptualization, Methodology, Formal analysis, Writing - review & editing.

Declaration of Competing Interest

The authors report no declarations of interest.

Acknowledgement

This study was funded by the Ministry of Science and Higher Education in Poland under Grant BST/WROC/2018/B/05.

Appendix A. Supplementary data

Supplementary material related to this article can be found, in the online version, at doi:https://doi.org/10.1016/j.rasd.2021.
101826.

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