The spectrum of attitudes towards the spectrum of autism and its relationship to psychological distress in mothers of children with autism

Abstract

Attitude of mothers towards their children’s autism may play a role in mothers’ psychological well-being. We investigated the predictive value of how mothers understand autism (as a neurodivergence or a developmental disorder) on their psychological distress. A group of 371 mothers of children on the autism spectrum participated in this study. We found that understanding autism as a neurodivergence was related to lower psychological distress in mothers, even after controlling for the level of autism symptoms. However, when controlling for caregiver burden, their attitude towards autism was no longer significant in explaining their psychological distress. These findings suggest that the way mothers understand autism may be important for their psychological adjustment. However, it also suggests that mothers of children on the autism spectrum may adopt different attitudes towards autism, depending on their child’s level of autism symptoms and the caregiver burden.

Lay abstract

Mothers of children on the autism spectrum experience high levels of emotional distress. Mothers cope with stress by having their own thoughts and opinions about their children. In this study, we tested whether the way mothers perceive autism may contribute to the level of distress they feel. Some mothers see autism as a developmental disorder that needs to be cured, but some see autism as a type of mind that needs to be accepted. Our findings showed that mothers who see autism more as a type of mind are generally less stressed. But we also showed that it matters how severe are the child’s symptoms, and how heavy was the perceived burden of caring for the child. These results imply that it is worth working on attitudes towards autism to help mothers cope better. But at the same time, we argue that mothers should not be judged for their perceptions of autism, as there is a huge spectrum of a child’s characteristics and family’s life circumstances.

Keywords

attitude towards autism autism spectrum conditions mothers of children with autism psychological distress resilience

Mothers of children on the autism spectrum¹ (autism spectrum conditions – ASC) experience elevated levels of stress, anxiety and depression compared to parents of typically developing children (Miodrag & Hodapp, 2010) and children from other clinical populations (Barroso et al., 2018). However, research has also shown that maternal psychological adjustment to a child’s diagnosis may act as a protective mechanism for maternal psychological well-being (Bekhet et al., 2012; Da Paz et al., 2018; Weiss et al., 2015). The purpose of this study was to investigate the effect of the maternal subjective understanding of autism on their psychological well-being.

ASC is a complex, heterogeneous condition with a wide range of developmental trajectories, outcomes, causes and responses to therapy. This complexity is further compounded by vastly differing conceptualisations. For example, an ASC can be understood as a developmental disorder (i.e. defined by deficits inherent to the person) or as a neurodivergence (i.e. a difference that constitutes a disability in the context of the demands of the neurotypical world) (Happé & Frith, 2020). Dealing with this complexity and a lack of clarity when coming to terms with a child’s diagnosis undoubtedly adds to the difficulty of an already difficult situation. However, there is also the potential for better adjustment if the parent adopts a way of understanding ASC that is beneficial from the perspective of preserving their own well-being. It has been shown that maternal coping strategies and cognitive reframing are significantly associated with maternal well-being (Benson, 2010; Pozo et al., 2014). Our study examined whether different ways of understanding ASC (as a disorder or as a neurodivergence) may be related to maternal psychological distress.

Although research on the subjective interpretation of ASC by mothers is limited, some evidence shows that having certain beliefs about ASC is related to the maternal level of distress. Mothers carry a variety of beliefs about the causes and course of their child’s diagnosis, and those beliefs impact their mental health (Goin-Kochel et al., 2020; Hebert & Koulouglioti, 2010). For example, Dale et al. (2006) found that mothers who attributed the cause of their child’s ASC to God’s will tended to have lower levels of stress, while attributing the cause of a child’s ASC to heredity, stress during pregnancy or the environment was related to higher levels of stress. Mothers who believed that they were personally responsible for their child’s ASC were the most stressed (Dale et al., 2006; Mickelson et al., 1999). Moreover, mothers who reported having more hope for their child’s development in the future reported higher well-being (Costa et al., 2017; Hebert & Koulouglioti, 2010). Interestingly, Costa et al. (2017) reported that this effect was present regardless of the child’s symptoms’ severity and that parental perception of their child’s symptoms (e.g. perceived negativity or emotional lability) was a significant predictor of maternal well-being. Falk et al. (2014) reported that variables in assessing parental cognitions (like perceived externalising behaviour of the child, perceived attachment between parent and child, and perceived ability to set behavioural limits for the child) and socioeconomic support were more significant predictors of parental mental health problems than child-centric variables.

In other words, parental attitudes, beliefs and perceptions of their child’s ASC may potentially play a significant role in how well parents adjust to and cope with their child’s diagnosis and may subsequently affect parents’ psychological functioning. Thus, certain cognitive strategies and perceptions might form an adaptive mind-set, which would help parents move towards resilience and maintaining mental health. At the same time, there is an ongoing debate regarding the conceptualisation of ASC as developmental disorders versus neurodivergence (Happé & Frith, 2020). The neurodiversity paradigm (Singer, 1999) emerged from the objection to defining ASC as disorders that followed the medical model of a disability (Baron-Cohen, 2017). The medical model defines ASC as disorders characterised by several deficits and limitations. From this perspective, ASC are deviations from the typical neurological and normative developmental path; as such, they require treatment. Conversely, the neurodiversity paradigm conceptualises ASC as neurodivergence, meaning an alternative variant of human neurology. Within this approach, individuals on the autism spectrum should be supported by minimising barriers and optimising a person–environment fit. However, seeking a cure is seen as misinformed, given the purported nature of ASC as inherent to individual neurology. Neurodiversity grows out of the activism of autistic people and opposes their discrimination as a minority (Baron-Cohen, 2017; Chapman, 2019, 2020; Den Houting, 2018; Kapp et al., 2013; Lai et al., 2020).

This debate has not been the subject of extensive empirical research to date. However, there is preliminary evidence in qualitative studies that individuals with autism (Griffin & Pollak, 2009; Humphrey & Lewis, 2008) and their parents hold beliefs and attitudes towards autism based on those two conceptualisations (Cascio, 2012; Kapp et al., 2013). Moreover, the ‘cure acceptance’ debate derived from the disagreement between neurodiversity and medical approaches remains an important and somewhat inflammatory issue in the autism community, especially for autistic people and their parents. The main point of contention is how to represent the rights of individuals on the entire autism spectrum. Some suggest that the neurodiversity paradigm is mainly adopted and promoted by persons with milder forms of autism and is relevant only to this group; consequently, it diminishes the burden of more severe autism (Hughes, 2021; Jaarsma & Welin, 2012). In addition, the assumption that an ASC is merely one of the variants of human neurology leads to certain logical consequences regarding the need for research into prevention, risk factors and treatment for autism, rendering these areas of research controversial. From this perspective, even psychological research focusing on deficits related to ASC has been criticised (Bolton, 2018; Guest, 2020).

Proponents of neurodiversity argue that its main tenets are to recognise the diversity of the spectrum and to tailor support to individual needs (Chapman & Veit, 2020; Den Houting, 2018); they object to describing ASC in terms of ‘severity’ and instead emphasise people having higher or lower support needs. Proponents also note that the neurodiversity movement has, for the first time, shifted the focus to the voices of individuals on the autism spectrum and thus shifted the debate around autism to autistic individuals and their actual needs and experiences, allowing a better understanding of ASC in general (Milton & Bracher, 2013). While limiting the scope and freedom of research into autism should not be the aim, perhaps changing the language used to describe autism in the public discourse so that it is more positive and less hurtful to the self-esteem and sense of self of autistic people should be an important step forward.

Setting those considerations aside, the question remains whether adopting the neurodiversity stance by autistic people and their families is indeed related to improved well-being, and if such an effect does exist, what could be the nature of its influence? If (as critics of the neurodiversity approach point out) the neurodiversity mind-set is adopted more readily by parents of children with less severe symptoms, then the differences in well-being could be explained as an artefact of the child’s functioning. To put it simply, their lives may not be affected by their child’s condition to the same extent as the lives of parents of children with more severe autism symptoms, which may result in better psychological functioning.

For example, Goin-Kochel and colleagues (2020) found that children of vaccine-hesitant parents more often experienced a developmental plateau and did not achieve fluent speech. It is therefore possible that parents of children with more severe manifestations of ASC or those whose children experience developmental plateaus or regressions are more likely to see autism as a disorder resulting from environmental factors than the child’s inborn neurology.

Conversely, it is well established that a child’s functioning, especially behavioural problems, strongly predicts parental distress (Barroso et al., 2018; Estes et al., 2009; Firth & Dryer, 2013). Al-Jadiri et al. (2021) reported that low family resilience was associated with parents’ perceptions of not getting support, the feeling of having a ‘child who is hard to care for’ and moderate autism severity. Thus, the child’s level of ASC symptoms remains an important potential confound in understanding the role of attitudes towards autism and parental well-being, even though some studies have reported that perceptions and beliefs about autism contribute to maternal mental health, regardless of the child’s functioning (Costa et al., 2017).

However, the level of behaviours associated with ASC is not necessarily a perfect proxy for the severity of the perceived burden of caregiving, which may be a deciding factor in a mother’s psychological well-being. The caregiver burden may be reliant on certain factors, such as emotional and instrumental support from others (Pozo et al., 2014) or access to services (Bonis, 2016). Moreover, there is evidence that mild ASC symptoms in young children are often related to a particularly stressful diagnostic process (Crane et al., 2015; Daniels & Mandell, 2013). Finally, parental perceptions of a child’s behavioural problems contribute to well-being even more than objectively measured ASC behaviours (Costa et al., 2017). Thus, the level of ASC behaviours is not a simple reflection of the maternal level of burden related to caring for a child on the autism spectrum. For this reason, in addition to ASC behaviours, we have also measured the caregiver’s perceived burden as a measure of the impact of the child’s autism on the mother’s quality of life.

In summary, attitudes towards autism (as a disorder or as a neurodivergence) have not been studied in terms of maternal psychological well-being. To fill this gap, we investigated maternal attitudes towards autism in relation to maternal psychological distress. We hypothesised that seeing ASC as a variant of human neurology rather than a developmental disorder would be related to lower psychological distress beyond and above the ASC symptoms severity and the caregiver’s burden. However, this relationship might be confounded by the child’s level of functioning or may stem from the burden of caring for a child on the autism spectrum; therefore, we controlled for those factors in our study.

Method

Participants

The sample comprised 371 mothers of children on the autism spectrum. Table 1 presents the demographic characteristics of the sample.

Table 1.

Participants’ demographic characteristics (n = 371).

Variable	Mean (SD) [range] / % (n)
Child’s age (in years)	8.43 (3.77) [2–18]
Child’s school placement
Special school	27.2% (101)
Inclusive class in mainstream school	26.4% (98)
Typical class in mainstream school	38.8% (144)
Home-schooling	3% (11)
Haven’t started school	4.6% (17)
Time since diagnosis (in years)	3.74 (3.11) [0–16]
Mother’s age (in years)	37.81 (5.30) [25–60]
Ethnicity: European	100% (371)
Mother’s education level – higher	66.8% (248)
Low family incomea	42.6% (158)
Residence in the city (with over 100,000 people)	46.4% (172)
Family structure
Living with the father of the child	76.3% (283)
Single parent	13.7% (51)
Living with partner other than the father of the child	10% (37)

Defined as income below the mean income per person in the family (in Poland in 2019, this value was around 400 euros).

As one of the inclusion criteria in the study, mothers were requested to confirm that their child had a clinical diagnosis prior to the study based on the criteria outlined in the (International Statistical Classification of Diseases and Related Health Problems, 10th Revision) and made by a psychiatrist. Children in the sample were diagnosed with autism (48%, n = 178), Asperger’s syndrome (37.7%, n = 140) and PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) (14.3%, n = 53). A minority of the children (15.6%, n = 58) had a comorbid intellectual disability diagnosis.

ASC symptoms were assessed during the study using the Autism Spectrum Rating Scale (ASRS; Goldstein & Naglieri, 2009). The ASRS confirmed the clinical ASC diagnosis. The ASRS–Parent Total T-scores ranged from 31 to 80 (M = 71.32, SD = 9.34).

Procedure

This research was approved by the Faculty Research Ethics Committee in accordance with the Declaration of Helsinki. Informed written consent was obtained from all participants.

Mothers were recruited through advertisements in autism-related support groups on social media and charity events for children with disabilities. Eligibility criteria included having a child aged 2–18 years with a clinical ASC diagnosis.

The participants completed a set of five questionnaires, either in person or online, including the following: (a) a demographic questionnaire; (b) the Depression, Anxiety and Stress Scale–21 (DASS-21); (c) the Attitude Towards Autism Questionnaire (ATA-Q); (d) the Autism Spectrum Rating Scales (ASRS); and (e) the Caregiver Burden Inventory (CBI). Six months later, a randomly selected group of 30 participants completed the ATA-Q as a part of the test–retest procedure to establish the reliability of this tool.

Measures

Demographic questionnaire

The participants completed information on demographic variables, including the child’s diagnosis (based on the ICD-10, time of diagnosis and presence of comorbid diagnoses), the child’s and the mother’s characteristics (age, ethnicity, mother’s education and child’s school placement), and family characteristics (family income, residence and family situation). The mothers estimated their family income per month by choosing from the following options for income per person in the family: (a) below 100 euro, (b) around 100–400 euro, (c) around 400–700 euro or (d) above 700 euro. These values were estimated based on the average income per month in Poland in 2019. Questions about residence included the following: (a) village, (b) small city (around 20,000 residents or less), (c) medium city (around 20,000–100,000 residents) and (d) big city (more than 100,000 residents). Questions about the family structure provided three options: (a) living with the father of the child, (b) single parent and (c) living with a partner other than the father of the child.

Psychological distress (DASS-21)

The DASS-21 is the abbreviated version of the DASS and comprises 21 items (Lovibond & Lovibond, 1995). This self-report scale measures negative emotional states of depression, anxiety and stress. The total score can also be used as a measure of psychological distress (Henry & Crawford, 2005), with higher scores indicating greater psychological distress. We used a Polish translation of DASS-21 by Marta Makara-Studzińska, Beata Petkowicz, Anna Urbańska and Jacek Petkowicz, from the DASS public domain. Mothers rated the frequency or severity of their emotional states over the past 2 weeks on a 5-point scale. The DASS-21 has shown excellent internal consistency (Cronbach’s α = 0.93), convergent validity and discriminant validity (e.g. Henry & Crawford, 2005). The Polish version of the DASS-21 has also shown excellent internal consistency (Cronbach’s α = 0.93) (Zur-Wyrozumska, 2020).

Child’s and mother’s attitudes towards autism (ATA-Q)

The ATA-Q was developed by the authors of this study (K.F. and M.E.K.) to measure attitudes towards autism, ranging from perceiving autism as a disorder (the medical model of disability) to perceiving autism as a neurodivergence (the neurodiversity paradigm). A higher total score indicates an attitude leaning towards neurodiversity, while a lower total score indicates a stronger medical attitude. The mothers rated their attitude by choosing to what extent they agreed or disagreed with each of 10 statements on a 5-point scale. The ATA-Q showed excellent internal consistency (Cronbach’s α = 0.93) in a large group of mothers (n = 373) as well as good 6-month test–retest reliability on a sample of 30 participants (r = 0.84) (Table 2). The psychometric properties were calculated in the same sample, and two participants were excluded due to no data on the CBI questionnaire. For further details regarding the development of the ATA-Q and all the items, please see Supplemental Appendix A.

Table 2.

Correlations for study variables (n = 371).

Measure	1	2	3
1. Attitude towards autism (ATA-Q)	–	–	–
2. ASC symptoms in a child (ASRS)	−0.11*	–	–
3. Caregiver burden (CBI)	−0.42**	0.43**	–
4. Mother’s age	0.07	0.05	−0.14**

ATA-Q: Attitude Towards Autism Questionnaire; ASC: autism spectrum conditions; ASRS: Autism Spectrum Rating Scales; CBI: Caregiver Burden Inventory.

p < 0.05, **p < 0.01.

ASC’ symptoms (ASRS)

The ASRS (Goldstein & Naglieri, 2009) in the Polish adaptation of Emilia Wrocławska-Warchala and Radosław Wujcik (2016) is a series of standardised, norm-referenced instruments designed to assess behaviours associated with ASC in children aged 2–18 years. The ASRS is a multi-informant measure available in a parent or teacher/caregiver format and consists of multiple scales: ASRS scales (social/communication, unusual behaviours), a Diagnostic and Statistical Manual of Mental Disorders (4th ed.; DSM-IV; American Psychiatric Association, 1994) symptoms scale and eight treatment scales (e.g. stereotypy, sensory sensitivity). Mothers rated the frequency of their child’s behaviour on a 5-point scale in each of the 70 or 71 items (depending on the child’s age). The ASRS-Parent Total score (reported in this study) showed excellent internal consistency (Cronbach’s α = 0.96–0.97) and good test–retest reliability (r = 0.81–.83) (Wrocławska-Warchala & Wujcik, 2016).

Caregiver burden (CBI)

The CBI measures caregivers’ perceptions of the demands of care. The CBI contains 24 items divided into five subscales, which cover five dimensions of caregiver burden: time dependence and developmental, physical, social and emotional burden. While the CBI was designed for caregivers of cognitively impaired older people (Novak, 1989), four of its five subscales (time dependence and developmental, social and emotional burden) have also been used to measure the burden of caregivers of individuals with other types of chronic conditions, including ASC. The mothers rated how disruptive they found each aspect of their situation using a 5-point scale, with higher scores indicating a higher burden. The CBI showed good and excellent internal consistency in studies involving mothers of children on the autism spectrum (Caserta et al., 2005; Novak, 1989). The scale was translated into Polish by the authors of this study using back translation.

Community involvement

This study was part of a larger research project aiming to understand the link between attitudes towards autism and mental health in autistic people and their families. The research questions for this project aligned with Autistica’s research priorities, which were identified by stakeholders connected to autism. The ATA-Q questionnaire used in this study was developed in collaboration with members of the autistic community and two mothers of children on the autism spectrum who did not participate in the study. We sought feedback from the mothers who took part in this study on our testing sessions and procedures throughout the project. The outcomes of the study were disseminated to and, where possible, discussed with the mothers who participated. Although autistic individuals and mothers of children on the autism spectrum were involved in this research, in future studies, more systematic frameworks of participatory action research (PAR) at every stage of the study would be desirable.

Results

Attitudes towards autism

The mothers displayed a range of attitudes towards autism, from perceiving autism as a disorder to perceiving it as a neurodivergence (M = 23.69, SD = 7.07 (10–46). Attitudes towards autism were related to the child’s ASC symptom level (r = –0.11, p < 0.05). Mothers who reported lower levels of ASC symptoms in their children displayed a stronger neurodiversity attitude. The mothers’ attitudes towards autism were related to caregiver burden (r = –0.42, p < 0.05). Mothers who reported lower levels of caregiver burden displayed a stronger neurodiversity attitude. A child’s age was positively correlated with attitude towards autism (r = 0.13, p < 0.05), with mothers of older children displaying a stronger neurodiversity attitude. The time since the diagnosis did not relate to the mothers’ attitudes (r = –0.06, p = 0.24).

Relationship between attitude towards autism and psychological distress

We performed a hierarchical multiple regression analysis first to examine the predictive value of the ATA-Q on maternal psychological distress; second, to investigate the confounding role of the child’s level of ASC symptoms and the caregiver burden on the relationship between attitude towards autism and psychological distress. Predictors were included in the model in five steps: (1) attitudes towards autism; (2) the level of ASC symptoms in the child, as measured by the ASRS; (3) maternal caregiver burden; (4) the mother’s characteristics; and (5) family characteristics. The results of the hierarchical regression analysis are presented in Table 3.

Table 3.

Results of linear regression analysis predicting maternal psychological distress (n = 371).

Variable	B	SE (B)	Wald χ²	p	95% CI (B)
Step 1
Intercept	69.72	5.22			[69.49, 79.96]
Attitude towards autism	−1.00	.21	22.58	.00**	[−1.42, −0.60]
Step 2
Intercept	−16.13	12.20			[−40.05, 7.79]
Attitude towards autism	−.83	.20	17.79	.00**	[−1.22, −0.45]
ASC symptoms in a child	1.15	.15	58.80	.00**	[0.85, 1.44]
Step 3
Intercept	−34.47	10.49			[−55.03, −13.92]
Attitude towards autism	.08	.18	.16	.68	[−0.28, 0.44]
ASC symptoms in a child	.44	.14	10.03	.00*	[0.17, 0.72]
Caregiver burden	1.23	.10	142.45	.00**	[1.02, 1.43]
Step 4
Intercept	−39.63	13.15			[−65.40, −13.86]
Attitude towards autism	.03	.19	.03	.87	[−0.33, 0.39]
ASC symptoms in a child	.46	.14	10.72	.00*	[0.19, 0.74]
Caregiver burden	1.24	.10	143.90	.00**	[1.04, 1.44]
Mother’s characteristics
Age	.15	.23	.45	.50	[−0.29, 0.60]
Education (lower)	−4.54	2.58	3.09	.08	[−9.60, 0.52]
Step 5
Intercept	−43.96	13.89			[−71.20, −16.73]
Attitude towards autism	.04	.19	.05	.83	[−0.33, 0.40]
ASC symptoms in a child	.45	.14	9.71	.00*	[0.17, 0.73]
Caregiver burden	1.22	.10	137.15	.00**	[1.02, 1.42]
Mother’s characteristics
Age	.17	.23	.58	.45	[−0.28, 0.63]
Education (lower)	−5.26	2.70	3.79	.05	[−10.56, 0.04]
Family characteristics
Residence outside of a city	−.61	2.46	.06	.80	[−5.44, 4.21]
Low household income	4.01	2.57	2.43	.12	[−1.03, 9.06]
Family: single parent	4.94	4.91	1.01	.31	[−4.68, 14.56]
Family: stepfamily	4.61	3.98	1.34	.25	[−3.20, 12.42]

ASC: autism spectrum conditions; CI: confidence interval.

p < 0.05, **p < 0.01. Predictors significant at p < 0.05 are marked in bold.

As hypothesised, we found that attitude towards autism was a significant factor in predicting maternal psychological distress (B = –1.00, p < 0.05). Mothers with attitudes closer to neurodiversity had lower levels of psychological distress.

In the second step, we introduced the level of ASC symptoms in the child. Attitude towards autism was still a significant predictor (B = –0.83, p < 0.05) of maternal psychological distress, even when the level of ASC symptoms (B = 1.15, p < 0.05) was controlled for. This result shows that both attitude towards autism and the ASRS score contribute to psychological distress.

In the next step, we added caregiver burden to the model. We hypothesised that the link between attitude towards autism and psychological distress might be an artefact of the general perception of burden related to caregiving. Attitude towards autism was no longer a significant factor (p = 0.68) in predicting psychological distress when caregiver burden (B = 1.23, p < 0.05) was controlled for.

Discussion

This study provides preliminary evidence that the way mothers understand autism, either as a developmental disorder or as a neurodivergence, is a significant factor in predicting their psychological distress. However, while the effect remains significant when the child’s functioning is controlled for, it becomes insignificant once the caregiver burden is included in the model.

Our results show that parents present a broad range of attitudes towards autism, from seeing it as a medical condition that requires treatment to seeing it as an extraordinary gift that is a source of pride. This result aligns with research showing that mothers of children with autism have different beliefs towards both autism (Costa et al., 2017; Goin-Kochel et al., 2020) and research showing that, in some cases, autism may be related to positive thoughts, feelings and experiences (Bayat, 2007). Our results also demonstrated that medical and social conceptualisations of a disability are reflected in the subjective attitudes of mothers towards their child’s autism (Cascio, 2012; Kapp et al., 2013).

We also confirmed the association between attitude towards autism and the child’s level of functioning (r = –0.11, p < 0.05 for ASC symptoms measured by the ASRS). Specifically, mothers who reported milder symptoms of autism perceived it as a neurodivergence, while mothers who reported higher levels of autism symptoms perceived it as a developmental disorder.

Previous research has shown that a child’s behaviour related to autism symptoms is a strong predictor of maternal psychological distress (Barroso et al., 2018; Estes et al., 2009; Firth & Dryer, 2013) and that maternal beliefs regarding the course and cause of their child’s autism predict a mother’s psychological well-being, regardless of her child’s level of functioning (Costa et al., 2017). In our study, attitude towards autism remained a significant predictor of maternal distress, even after we controlled for the level of the child’s ASC symptoms. Thus, while the level of a child’s ASC behaviours does predict maternal distress, the predictive value of attitude towards autism is not merely an artefact of the child’s level of ASC symptoms.

However, once we controlled for caregiver burden, the effect of attitude was no longer a significant predictor of maternal psychological distress. We also observed a substantial decrease in coefficient size. We found that parents who reported a lower caregiver burden tended to adopt attitudes closer to neurodiversity and tended to have lower levels of psychological distress. However, these results may be subject to varying interpretations because the subjective perception of caregiver burden stems from multiple sources, both internal and external. For example, it is possible that the effect of attitude stems from a general tendency towards the optimistic perception of one’s own circumstances; as such, it may indicate the role of a positive mind-set. In other words, parents with an optimistic mind-set may view both their own situation and their child’s functioning as more positive.

Conversely, the perception of caregiver burden may also be driven by external factors, such as the objective level of difficulty of the caring role. However, this group of factors is not solely related to a child’s characteristics. It may also stem from the level of family support, social support, professional support, the monetary cost of caring for the child in relation to the family income and many other factors, which can lead to the subjective feeling of burden, independent of the child’s functioning. These factors may also cause an aggravation of the child’s functioning due to a mismatch between the child’s needs and their environment, and the interaction between the child and the environment may also contribute to caregiver burden. In our study, we controlled some of the demographic characteristics related to the family situation, such as income, family structure or place of residence. However, there may be other factors that could potentially play a role. In summary, the caregiver burden is a complex measure, so caution is needed when interpreting its relation to attitudes towards autism and maternal psychological distress. Our results show that caregiver burden is crucial in understanding the relationship between attitude towards autism and psychological distress in the mothers of children on the autism spectrum.

Costa et al. (2017) argued that the relationship between maternal perception of their child’s autism and their own well-being has important implications for clinical practice, and it may offer the potential for cognitive-behavioural training that aims to improve parental well-being through the cognitive reframing of their child’s problems and by targeting parental attributions and belief systems. In fact, there are some pioneering resilience interventions, such as the Acceptance, Mindfulness, Optimism and Resilience (AMOR) method, which shows promising results in improving the mental health of parents (Schwartzman et al., 2022). The AMOR method is an 8-week group intervention designed to teach evidence-based resilience strategies based on the cognitive-behavioural approach (e.g. self-compassion, stress management and mindfulness) to parents of children with ASC. Our study presents another piece of evidence that parental subjective interpretation of autism is related to their well-being. However, given its strong relationship to caregiver’s burden, before we are able to make recommendations for practice and psychological interventions, more research is needed on the causality of this relationship.

Perhaps, a high quality of life and a generally positive outlook could act as ‘buffers’ that protect maternal well-being from stressors related to their child’s situation. This variable may be key to obtaining a thorough picture of maternal well-being, which, in turn, would allow us to place the role of attitudes towards autism in the wider context, and assess the size and importance of its relative contribution to how mothers of children with autism feel and cope.

Therefore, to assess the impact of a child’s autism on the well-being of their parent, instead of focusing on the extent of caregiver burden, we should perhaps try to measure the extent of parental resource depletion, which is a function of both the stress generated by the child’s diagnosis and the resources the parents may have to adjust to the situation.

Our results show that attitude towards autism is closely related to caregiver burden (r = –0.42, p < 0.05); as such, parents with a higher reported burden more often consider autism as a developmental disorder than a neurodivergence. Their attitudes may simply reflect their situation, and there is no single correct or best adaptive way of thinking about autism. Thus, the width of the spectrum of attitudes towards autism reflects the width of the spectrum of autism itself. It may be that the very idea of a single adaptive mind-set towards autism does not reflect the primary characteristic of the autistic spectrum, that is, its varied nature.

Nevertheless, it is possible that some ways of understanding what autism is might be more adaptive, at least for certain subgroups of parents of children on the autism spectrum (e.g. parents of children who are the most independent versus parents of minimally verbal children with multiple comorbidities). It seems worthwhile to test whether interventions based on changing a mother’s perception of autism to neurodiversity would improve her psychological well-being.

This study is not without limitations. First, the direction of causation is uncertain in the cross-sectional study. A longitudinal study is needed to examine the causality of the relationship between the study variables. It might be possible that a mother’s attitude towards autism influences her judgement of the severity of ASC behaviours and the caregiving burden. For example, mothers who perceive autism as a neurodivergence may be more likely to ignore the child’s difficulties or see their autistic behaviours as milder. Conversely, mothers who consider autism a disorder might see the child’s behaviours as more severe and their own role in supporting the child as more burdensome. Second, the results of this study are limited to mothers of children on the autism spectrum. Our sample consisted only of mothers, and we did not include fathers in the study. Fathers may exhibit different patterns of psychological adjustment to a child’s diagnosis compared to mothers (Kayfitz et al., 2010; Pozo et al., 2014), so we assumed that their attitudes towards autism might also differ from maternal attitudes, and the association between variables we tested may present different patterns for fathers. Due to limited resources, we were unable to include large groups of both parents. Future investigation on attitudes towards autism in fathers is needed. Addressing attitudes towards autism and the perceptions of the caregiver burden within the context of the family dynamic could be an interesting direction for future studies. Beliefs held by fathers and the level of support within the family would give a more comprehensive picture of resilience. Third, we did not control for the educational setting and therapeutic approaches chosen by the family, which might potentially influence maternal attitudes towards autism. Various therapy programmes differ in basic assumptions about autism and expected outcomes (Wong et al., 2015). It is possible that mothers’ attitudes are shaped by the therapy programme in which their child participates and its practitioners. It would be interesting to study how participating in different therapy programmes changes parental attitudes towards autism. Fourth, we did not control for the time since diagnosis, which can be a potentially confounding factor, as mothers of recently diagnosed children could perceive autism in a specific way due to their limited knowledge and experience. However, our data showed no correlation between the time since diagnosis and attitudes towards autism. Fifth, cultural setting may play a role because attitudes towards autism, the quality of life of autistic people and therapeutic approaches may vary by country (Caron et al., 2021). This study was conducted in Poland. ASC support is available across the country, but it is much easier to find support for a young child and when living in an urban area than for an adolescent or adult and when living in the countryside. The medical view of autism is dominant, but there is emerging neurodiversity self-advocacy. In addition, there is a large stratification of views and discordance between persons adopting the medical perspective and those adopting the neurodiverse view of autism within the autism community. Finally, caregiver burden reflects the subjective perception of burden related to caregiving. It seems worthwhile to measure the burden of caregiving using objective indicators. Given that caregiver burden and psychological distress were measured as self-reports, these variables may partly refer to the same concept. The emotional burden subscale, which is a part of the CBI, captures negative feelings related to caring for a child, while the DASS-21 captures the overall level of depression, anxiety and stress.

What are the implications of these results for clinical practice? On one hand, our study showed that mothers’ attitudes towards autism are tied to their child’s position on the autism spectrum. Given the lack of consensus about which conceptualisation most accurately describes the reality of autism, it is not clear whether practitioners should advocate a contested view on the basis of its instrumental value. Thus, at this point, rather than changing attitudes, clinicians should accept that parents have the right to perceive autism in accordance with either the medical or neurodiversity paradigm, as it is simply a reflection of the particular circumstances of their child and their family. However, based on our results, it might be acceptable and helpful to make mothers aware of the range of attitudes towards autism beyond the medical model. Moreover, the realisation that there might be a mismatch between the attitudes towards autism adopted by parents and those adopted by clinicians seems to be helpful in clinical practice as such discrepancies could potentially create multiple challenges in the therapeutic process. On the other hand, as attitudes are related to psychological well-being, there might be a potential for positive change and the search for an ‘adaptive mind-set’ might be worthwhile. However, perhaps the concept of ‘adaptive mind-set’ should be considered more broadly, to include not only basic understanding of autism on the disorder/neurodiversity axis, but also other aspects, such as knowledge about autism, cognitive coping strategies, attitude towards available services and support. Finally, this study shows that, while clinicians should be aware that conceptualisation of autism might influence mother’s well-being, it is important to understand that both the attitude towards autism and maternal well-being might be to a large extent a function of caregiving burden. At this point, it has not been yet demonstrated that changing beliefs towards autism may be helpful in improving maternal well-being and more research is needed before such intervention can be recommended.

There is unquestionable consent that autism is a spectrum. Perhaps, when thinking about parents, we should be taking a similar perspective? Their attitude towards their child’s autism is a product of not only the child’s unique constellation of symptoms and their severity, but also their own characteristics, resources and circumstances. Perhaps, parental attitudes should be therefore seen as a personal view of their own situation and as such, not subjected to judgement.

Moreover, seeing autism as a spectrum is helpful in supporting autistic individuals, because it allows us to understand them better and tailor support to their individual circumstances. Similarly, understanding the spectrum of attitudes towards autism might help us to understand and support parents. The awareness that mothers have different attitudes towards autism may help clinicians understand parents better and help them adapt.

Supplemental Material

sj-docx-1-aut-10.1177_13623613221081185 – Supplemental material for The spectrum of attitudes towards the spectrum of autism and its relationship to psychological distress in mothers of children with autism

Supplemental material, sj-docx-1-aut-10.1177_13623613221081185 for The spectrum of attitudes towards the spectrum of autism and its relationship to psychological distress in mothers of children with autism by Kinga Ferenc, Katarzyna Byrka and Magdalena Ewa Król in Autism

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This study was funded by the Ministry of Science and Higher Education in Poland under Grant SUB2019.

ORCID iDs

Kinga Ferenc

Magdalena Ewa Król

Supplemental material

Supplemental material for this article is available online.

Notes

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