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. Author manuscript; available in PMC: 2025 May 1.
Published in final edited form as: J Autism Dev Disord. 2023 Apr 11;55(5):1923–1931. doi: 10.1007/s10803-023-05978-9

Prevalence and Predictors of DSM-Specific and Distinct Anxiety in Cognitively Impaired Autistic Preschool Children

Jordan Klein 1,*, Connor Kerns 2, Kimberly Hills 3, Abigail Hogan 3, Sara Matherly 4, Jane Roberts 3
PMCID: PMC11441628  NIHMSID: NIHMS1985123  PMID: 37039980

Abstract

Autistic individuals are twice as likely to meet criteria for anxiety than neurotypical children; yet we lack understanding of early presentations of anxiety in young autistic children, especially those with cognitive impairment. This study is the first to utilize an autism-specific anxiety diagnostic interview with 28 preschool cognitively impaired, autistic children and 18 neurotypical, age-matched controls. Results indicate that 64% of autistic children met criteria for DSM-specified or “other specified,” herein referred to as “distinct,” anxiety disorders; 32% met criteria for multiple anxiety disorders, with phobias occurring most often. Results indicate that anxiety is highly prevalent in cognitively-impaired, autistic preschool children, highlighting the need for developmentally-tailored assessment and treatment in early childhood.

Keywords: autism spectrum disorder, anxiety, intellectual disability, cognitive impairment, preschool

Autistic individuals are twice as likely as neurotypical peers to develop an anxiety disorder, with approximately 40% of school-aged autistic children meeting criteria for an anxiety disorder (Vasa et al., 2020). Comorbid symptoms of anxiety result in more severe impairments that reduce quality of life and impact functioning in autistic individuals (Lever & Geurts, 2016; Matson & Cervantes, 2014; Wood & Gadow, 2010). Early detection and targeted treatment of anxiety are known to improve outcomes (Sukhodolsky et al., 2013; Vasa et al., 2014; Vasa et al., 2017). Thus, understanding the prevalence and predictors of anxiety in preschool-aged autistic children can facilitate early and effective intervention to improve their quality of life and functional outcomes.

While elevated anxiety rates have been well established in autistic school-aged children and adults, the detection of anxiety in preschool-aged autistic children remains understudied (Gartstein et al., 2010; Prior et al., 2000; Shephard et al., 2019). There is only one diagnostic study to date that included preschool-aged autistic children, in which 66.5% of a clinically recruited sample met diagnostic criteria for generalized anxiety disorder (GAD), 52.7% met for specific phobia, 15.1% met for social anxiety, and 75.6% of children met for two or more anxiety disorders (Salazar et al., 2015). The sample, however, included children outside the preschool age (up to 9 years old), so conclusions about prevalence of anxiety in the preschool developmental period, when early intervention may be most effective, cannot be firmly drawn. Furthermore, this study used a clinical-diagnostic measure designed for neurotypical preschoolers, and therefore did not take into account the potentially distinct, or autism-specific, presentations of anxiety symptoms in autistic individuals (Egger & Angold, 2004; Salazar et al., 2015). Thus, a current limitation in the field is the lack of diagnostic studies in preschool-aged autistic children using measures specifically normed for detecting anxiety in autism.

Research characterizing anxiety in preschool autistic children is challenging because there is a lack of precise measurement tools, particularly for children with cognitive and language impairments, and anxiety in autistic children may present in a distinct matter (Kerns et al., 2014; Skwerer, et al., 2019). Also, anxiety symptoms in young children can be subtle with features overlapping with other conditions (e.g., autism, intellectual disability), or overshadowed by externalizing behaviors. Thus, the field is limited in diagnostic studies in preschool-aged autistic children, with no published work focused on young autistic children who have cognitive impairment for whom a developmentally tailored tool might be particularly needed.

Autistic children show a range of intellectual abilities with ID occurring in approximately one-third of autistic children (Baio et al., 2018) but many autistic individuals with ID are excluded from studies given the difficulty with self-report and a lack of sensitivity of measures to distinguish overlapping features of ID and anxiety. A recent study used the ADIS/ASA in a sample of autistic children (ages 9–13) and 30% of the sample included individuals with ID (Kerns et al., 2020). The results indicated elevated rates of anxiety in autistic children, with 69% of the autistic group meeting criteria for at least one anxiety disorder. Autistic children with comorbid ID were significantly more likely to meet criteria for specific phobias than children without ID. Assessing the presence of anxiety excluding common phobias is of particular interest during the preschool age-range, as typical phobias, such as fear of the dark or thunder, are developmentally typical for children between ages 4–6 (Evans et al., 1999) and identifying children who meet criteria beyond developmentally appropriate fears might serve more clinical utility.

Emerging evidence suggests that anxiety in autistic individuals can present both traditionally (e.g., worry about performance, fear of animals) and distinctly (e.g., fear of change, uncommon phobias of specific sounds or sensations), which can be difficult to detect in measures developed for the general population (Kerns et al., 2014). For example, traditional anxiety measures differentiate whether a child’s social anxiety is driven by a fear of evaluation or rejection (a criterion for social anxiety disorder) versus other aspects of a social encounter (i.e. difficulty understanding or predicting the behavior of others), nor assess fears related to preoccupations, minor changes or uncommon triggers (e.g. beards, mechanical objects, songs), though these presentations are routinely arise in autistic youth (Kerns et al., 2014; 2017; 2020; Rodgers et al., 2016; Scahill et al., 2019). In order to capture these distinct presentations and differentiate overlapping anxiety and autism symptoms, an autism addendum for the Anxiety Disorders Interview Schedule- Child/Parent, Parent Version (Kerns, et al., 2017). Studies of this instrument amongst cognitive-able, school-age autistic children support the convergent and discriminant validity of the measure and indicate strong inter-rater and 2-week retest reliability amongst trained evaluators (Kerns et al., 2014; 2017). In a recent study of anxiety in autistic children with varied intellectual abilities, evaluators also established inter-rate reliability (100% exact diagnostic agreement on 3 interviews) on initial cases; however, reliability throughout the sample was not assessed (Kerns et al., 2020).

Using a tailored measure is advantageous as it may allow a more developmentally-appropriate and sensitive evaluation of anxiety in autistic youth and reduce both the over or under-diagnosis of anxiety disorders in this population due to symptom overlap. To date, there are limited studies of anxiety disorders in young autistic children, particularly those with cognitive impairments, and none using an autism-specific tool. To address this gap, the present study utilized an autism-specific diagnostic measure of anxiety to compare the rates of anxiety disorders (both DSM-specified and distinct) in a well-characterized sample of preschool-aged autistic children with cognitive impairment compared to age-matched neurotypical controls. The present study addresses the following research questions:

  1. What are the rates of overall, DSM-specific, and distinct anxiety disorders in young autistic children with cognitive impairment?

  2. How do the rates of overall, DSM-specific, and distinct anxiety disorders compare between autistic children with cognitive impairment and age-matched neurotypical controls?

  3. Does cognitive ability, autism symptom severity, or age differ between those who meet criteria for anxiety compared to those who do not?

Methods

Participants

Participants were drawn from an ongoing, longitudinal NIMH study focused on the emergence of anxiety symptoms in children aged 3–5 years old with cognitive impairment (R01MH107573). In the present study, 46 children (ASD, n = 28; TD, n = 18) between 48–72 months were included. Approximately 72% of the autistic children showed significant developmental delays on the Mullen Early Learning Composite (M = 60.4, sd = 16.3; Table 1). Children were excluded if they were premature (gestational age < 37 weeks), had a history of seizures, or had any known genetic disorders according to parent report. The autistic sample was confirmed to have autism through a Clinical Best Estimate (CBE) review process (Roberts et al., 2020). Individuals in the neurotypical (TD) group had no family history of autism nor known diagnosis of autism. The TD comparison group was included in order to provide a reference for the ADIS/ASA in a preschool sample of children, given that this measure has not been studied in this young of a sample.

Table 1.

Means of Independent Variables by Group

ASD TD Group Comparison
ADOS-2 CSS1* 6.7 (1.7) 1.9 (1.5) t(1, 36) = 8.53
Mean (sd)
Sex M(F) 23 (5) 12 (6) p = 0.007
Mullen ELC2* 60.4 (16.3) 102.9 (18.3) t(1, 36) = −7.31
Mean (sd)
Age 61.5 (3.5) 64.1 (7.7) t(1, 44) = −1.58
Mean (sd)
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1

Autism Diagnostic Observation Schedule-2nd Edition, Calibrated Severity Score

2

Mullen Early Learning Composite Standard Score

*

Significant at 0.001

Anxiety Diagnosis and Severity.

The Anxiety Disorders Interview Schedule for DSM-5, Parent Version, with Autism Spectrum Addendum (ADIS/ASA) is a well-validated DSM-5 diagnostic measure developed for the differentiation and diagnosis of traditional anxiety disorders (specific phobia and generalized, social, separation anxiety disorders) as well as distinct or “other specified” presentations that arise around features of autism (Kerns, et al., 2017). Specifically, the ASA addendum assesses for anxiety related to social situations (despite limited awareness of social evaluation), uncommon phobias (e.g. happy birthday song, beards), focused interests, and minor changes (which are differentiated from a general tendency to respond poorly to change/transitions when they occur). Additionally, the ASA addendum includes questions assessing differentials between anxiety and autism (i.e. sensory behaviors), given the significant overlap in phenotype. A specific strength and challenge of the present sample was the young chronological age as well as the low cognitive level. Thus, significant time was spent during each interview dissecting the child’s behavior, the intensity of the behaviors, and the impact of those behaviors on the child and family. Examples were also tailored developmentally for young children. For instance, parents were asked if a child was afraid when called on in circle time as opposed to reading aloud in class. Clinicians focused mainly on behavioral examples and descriptions, particularly for children with limited language abilities.

Each anxiety presentation has an assigned clinician severity rating (CSR) from 0 (no impairment) to 8 (severe impairment often requiring hospitalization), with scores of at or above 4 indicating the clinical threshold for an anxiety disorder. Graduate students who were research reliable on the ADIS/ASA conducted all interviews. Reliability was assessed by a second, independent evaluator on 20% of all interviews (95% overall agreement; diagnostic κ = .81).

Developmental Level.

The Early Learning Composite (ELC) of the Mullen Scales of Early Learning (Mullen, 1995) was used to index overall developmental level. The Mullen Scales of Early Learning (MSEL) is a standardized developmental measure that assesses the cognitive and motor abilities from birth to 68 months across 5 subscales of development—expressive language, receptive language, gross motor, fine motor, and visual reception. The Early Learning Composite (ELC) is an overall composite score of developmental abilities, excluding gross motor skills. The ELC has a mean score of 100 with a standard deviation of 15 and the standard score was used to characterize the sample (Table 1).

Autism Severity and Diagnosis.

The calibrated comparison score (CSS) from the Autism Diagnostic Observation Schedule- 2nd Edition (ADOS-2; Lord et al., 2012) indexed autism severity. It is a 1–10 severity score reflecting the overall social communication impairments along with the presence of restrictive, repetitive behaviors. The ADOS-2 was administered and scored by graduate-level professionals who have completed research reliability training. Inter-rater reliability was assessed on 20% of ADOS-2 administrations (83.3% item-level agreement).

Data Analysis

All analyses were completed in SPSS 28.0. Descriptive statistics were conducted to characterize the sample for autism severity, sex, cognitive ability, and age (Table 1). Percentages of each group meeting criteria (ADIS/ASA CSR ≥ 4) for any anxiety disorder, multiple anxiety disorders, and specific anxiety disorders were computed, and Chi-square analyses and Fisher’s Exact Test were used to compare rates between the ASD and TD groups (Table 2). Additionally, as specific phobias are common in neurotypical preschool children (Evans et al., 1999; Paulus et al., 2015), some studies have excluded typical specific phobias to assess the prevalence of anxiety concerns beyond common developmental fears. As such, we also compared the rate of anxiety disorders excluding typical phobias between groups. Finally, CSS, ELC, and age were compared between those who met criteria for anxiety and those who did not meet criteria for anxiety within each group.

Table 2.

Percentage of Anxiety Disorder Diagnoses by Group

ASD TD
n = 28 n = 18
Any Anxiety Disorder 64.3 (n = 18) 44.4 (n = 8)
Anxiety Disorders excluding Specific Common Phobia 42.9* (n = 12) 16.7 (n = 3)
Anxiety Disorders excluding Common & Uncommon Phobias 35.7 (n = 10) 11.1 (n = 2)
DSM-Specific Anxiety Types 50.0 (n = 14) 33.3 (n = 6)
Separation Anxiety 17.9 0
Specific Phobias 46.4 27.8
Social Anxiety Disorder 3.6 5.6
Generalized Anxiety Disorder 0 0
Distinct Anxiety Types 42.9* (n = 12) 11.1 (n = 2)
Uncommon Phobias 28.6 5.6
Other Social Fears 10.7 0
Fears Related to Special Interests 14.3 5.6
Fear of Change 7.1 0
Multiple Anxiety Disorders 32.1 (n = 9) 0 (n = 0)
Multiple Anxiety Disorders excluding Common & Uncommon Phobias 17.9% (n = 5) 0 (n = 0)
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*

Significant at p < 0.05

Results

Rates of Anxiety Disorders

In the ASD group, approximately 64% (n = 18) met criteria for any anxiety disorder, contrasted to approximately 44% (n = 8) of the TD sample (X2(1) = 1.76 p = 0.185) (Table 2). When excluding DSM-specific phobias, 42.9% (n = 12) of the ASD group met criteria for an anxiety disorder (DSM-specified or distinct) compared to 16.7% (n = 3) of the TD group, (X2(1) = 4.28, p = 0.039), a result reflecting a medium effect size (w = −.31). When removing all phobias (common and uncommon), 35.7% (n =10) of the ASD sample continued to meet criteria for anxiety compared to 11.1% (n =2) of the TD group, which was not statistically significant. The most common phobias reported were fear of loud noises (ASD n = 3; TD n = 4), the doctor or dentist (ASD n = 7; TD n = 0), and haircuts (ASD n = 4; TD n = 0). Fifty percent (n = 14) of the ASD group met criteria for a DSM-specific anxiety disorder compared to 33.3% (n = 6) of the TD group (X2(1) = 1.24, p = 0.266); however, many of these disorders were specific phobias (Figure 1a and Figure 1b).

Figure 1a.

Figure 1a.

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Summary of DSM and Distinct Anxiety in Autistic Children

Figure 1b.

Figure 1b.

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Summary of DSM and Distinct Anxiety in TD children

For distinct anxiety, 42.9% (n = 12) of the ASD group met criteria compared to 11.1% (n = 2) of the TD group (X2(1) = 5.22, p = 0.022), reflecting a medium effect size (w = −.34). In the TD group, one child met criteria for an uncommon phobia (fear of water on his head) and another child met criteria for a special interest fear. The latter child was particularly fixated on the mail delivery to their house, to the point where he would express significant worry about missing the mail delivery and about someone else getting the mail. On one instance when the family left town, they brought mail to “deliver” to the hotel room door to help accommodate his fear. For the ASD group, uncommon phobias included fears of haircuts, public bathrooms, echo sounds, and water on their face or head. Although sensory aversions and specific phobias were often intertwined, the ADIS/ASA interview provides a structure for extensive differential diagnosis of these two behaviors. Some of the distinguishing features of the uncommon phobias included an anticipatory fear or worry prior to the sensory experience and worry that caused distress even when the sensory experience had concluded.

Associations between anxiety and clinical features (CSS and ELC) were assessed within groups. Within the ASD group, those who met criteria for any anxiety disorder showed a significantly higher CSS (M = 5.76) than those that did not meet criteria for anxiety (M = 3.38) (t(36) = −2.62, p = .006). No significant differences for CSS were seen within the TD group, although the sample size was limited (n = 14, p > 0.05). For the ELC, no significant differences were seen within the ASD group between those who met criteria for anxiety and those who did not (p > 0.05). Within the TD group, those who met criteria for anxiety showed a significantly lower ELC score (t(11) = 1.84, p = .047). Age was not significantly different between those with an anxiety diagnosis and those who did not meet criteria for anxiety for the ASD group (p <0.05) nor within the TD group (p <0.05).

Discussion

Autistic children with anxiety are more likely to have adaptive impairments, increased social difficulties, and a lower quality of life as they age (Kerns et al., 2015; Lever & Geurts, 2016; Smith, Ollendick, & White, 2019; van Steensel, Bögels, & Dirksen, 2012). Thus, detecting anxiety symptoms and providing targeted treatment early in childhood is critical to impact long-term developmental trajectories for autistic individuals. Several challenges exist to accurately assessing anxiety in young autistic children including limited language and socio-emotional insight, reliance on parent-report, a lack of measures developed for autistic populations, and distinct presentations of anxiety in these children. The present study utilized a clinician-administered diagnostic interview with an addendum designed to capture the nuanced presentation of anxiety and to parse out anxiety from autism symptoms in order to illuminate early manifestations of anxiety in autistic children, the majority of whom (i.e., 72%) also have cognitive impairment. As this is a largely understudied population, the present study conducted in-depth interviews with tailored behavioral examples and clinical consideration of developmental level, with strong inter-rater reliability. Results indicated that 64% of preschool autistic children showed clinically significant anxiety, with important variance associated with the manner of classifying anxiety disorders and with individual differences as outlined below

In the autistic group, 64% of the preschool children met criteria for either a DSM-specified or distinct, “other specified” anxiety disorder. This rate in our preschool sample saturated with cognitive impairment is similar to rates of 69% reported by Kerns et al. (2020) using the ADIS/ASA in a sample of school-aged autistic children (9–13 years) with varied cognitive abilities. When excluding common specific phobias, 43% of autistic individuals still met criteria for any anxiety disorder which was significantly greater than the 17% observed in the non-autistic, cognitively average group. When excluding all phobias (common and uncommon), approximately 36% of the autistic group continues to meet criteria for an anxiety disorder. These results also parallel the findings of the Kerns et al. (2020) study, which reported that 36% of school-aged children with intellectual disability met criteria for anxiety excluding phobias. Thus, these two studies show similar rates of combined DSM-specified and distinct anxiety disorders across preschool and late childhood for autistic children with cognitive disabilities. Further, one study using an autism-specific anxiety scale found that the majority of parents reported distinct anxiety (i.e., intolerance of uncertainty) for children aged 5–6 years old (Keen et al., 2019), providing additional evidence for the investigation of distinct anxiety subtypes in young autistic children.

The rate of DSM-specified anxiety disorders in the autistic group (50%) was also consistent with previously reported ranges of 42–55% (de Bruin, 2007; Kerns et al., 2020; White, 2009). However, studies that have included distinct presentations of anxiety, including the current study, have found that rates of anxiety are closer to two-thirds of autistic children (den Houting, 2018; Kerns et al., 2020; Kerns et al., 2014). These findings highlight the fact that anxiety measures developed for and normed on neurotypical children are not calibrated to sensitively capture distinct anxiety presentations, and those measures may result in underrepresentation of anxiety in young and cognitively impaired, autistic children. In our own sample, 9 children presented with uncommon phobias which had a significant impact on their own lives and their families. Thus, using measures that assess for distinct presentations of anxiety (e.g., the ADIS/ASA; ASC-ASD; PRAS-ASD; Kerns et al., 2017; Rodgers et al., 2016; Scahill et al., 2019) could provide insight into anxiety in autistic individuals with ID, which is approximately one-third of the autistic population (Baio et al., 2018).

The autistic group was significantly more likely to meet for multiple anxiety disorders than the TD group (29% vs. 0% respectively), consistent with previous studies (Kerns et al., 2020). It is notable that none of the preschoolers in the TD group met for multiple anxiety disorders even when excluding common and uncommon phobias. Thus, the presence of multiple anxiety disorders in 29% of autistic individuals is striking because distinct anxiety was co-occurring with DSM-specific anxiety, suggesting a potential shared vulnerability for anxiety overall. In the present study, the majority of the sample met criteria for a common or uncommon phobia; nonetheless, when all phobias are excluded, a notable subgroup (~18%) of the autistic sample continued to meet criteria for more than one anxiety disorder. Many studies simply report “at least one” anxiety disorder for autistic children and not specific results for multiple anxiety disorders (see van Steensel et al., 2011; see White et al., 2009), even though evidence suggests that anxiety disorders are highly co-occurring (Sherbourne et al., 2010). It is possible that children with multiple anxiety disorders experience compounding effects over time of increased impairment, comorbid internalizing problems, and familial stress, as is seen in typical populations (Beesdo et al., 2011; Sherbourne et al., 2010), but longitudinal studies examining the impacts of multiple anxiety disorders for autistic children are lacking. The comorbidity could reflect a general vulnerability to anxiety disorders in autistic individuals rather than a vulnerability for a specific disorder. It could also indicate that multiple disorders early in life transition into specific disorders later in life or, given that most autistic children met for DSM and distinct anxiety, it could indicate that anxiety manifests in both traditional and distinct ways for neurodivergent children (Figure 2a and Figure 2b). Future work is needed to determine the impacts of multiple anxiety disorders as well as the trajectory and longevity of these disorders over development.

Figure 2a.

Figure 2a.

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Number of Individuals with DSM-Specific Anxiety by Group

Figure 2b.

Figure 2b.

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Number of Individuals with Distinct Anxiety by Group

In terms of specific anxiety disorders, 53% of the autistic group met criteria for either common (46.4%) or uncommon phobias (28.6%). Previous research using the ADIS/ASA has also found that specific phobias are highly prevalent in autistic youth with ID (Kerns et al., 2020). This study also found that specific phobias, including uncommon fears, are a highly prevalent presentation of anxiety in children with young chronological or mental age, whereas more abstract fears and worries might be more common in older and cognitively abled children, as no children in the present study met criteria for GAD. Previous work in autism has shown a higher prevalence of phobias in children with low cognitive levels (Hallett, et al., 2013; Kerns, et al., 2020) and a higher rate of generalized anxiety or social anxiety disorder in older, autistic individuals with higher cognitive levels (Kerns et al., 2020; Salazar et al., 2015; Simonoff et al., 2008). One hypothesis is that young children with cognitive impairment are unable to express generalized anxiety (abstract cognitions), and instead, parents are more likely to report specific fear behaviors (concrete cognitions) that they observe behaviorally. Thus, in children with low chronological or mental age, the prevalence of anxiety disorders beyond typical fears can provide more clinical utility for understanding which children are at the highest risk for long-term difficulties with anxiety. A recent longitudinal study in neurotypical preschool children at risk for anxiety found that approximately 64% showed a normative decrease in anxiety symptoms by school age; yet, over one-third of the preschoolers had anxiety that persisted into school-age (Kertz et al., 2019). This indicates that a subgroup of autistic children with anxiety may be likely to have persistent anxiety. Future studies utilizing longitudinal data are needed to understand the trajectory of developmentally appropriate fears and to determine if preschool children who meet criteria for typical phobias continue to show features of anxiety as they age.

Cognitive impairment impacts approximately one-third of autistic individuals (Baio et al., 2018), and thus the inclusion of people with varied intellectual abilities in study populations is essential to ensure we do not neglect specific subgroups. Previous literature is inconsistent on the prevalence and presentation of anxiety in autistic individuals with cognitive impairments, with rates tending to vary across measures, language abilities, and age (Kerns et al., 2014; Skwerer, et al., 2019). While this study was reliant on parent-report of anxiety symptoms, it attempted to provide insight into anxiety behaviors in young autistic, cognitively impaired children. This preliminary work suggests that anxiety is not only present and impairing in a significant percentage of this population, but often presents as specific phobias or atypical anxiety. The clinical impairment reported by parents warrants the development and study of interventions targeting anxious behaviors and increased psychoeducation and support for parents of young autistic children.

While the present study is novel in the age range, cognitive ability, and the clinical interview used, it is limited in sample size which reduces power and limits generalizability of the results. Although the ADIS/ASA utilizes clinical judgment, the interviews were restricted to parent perspective. Given the language and socio-emotional delays in this population, future studies incorporating behavioral and physiological measures of anxiety alongside parent perspective would create a comprehensive picture of anxiety in young autistic children with low cognitive abilities. Thus, the results should be viewed as a preliminary understanding of anxiety in preschool autistic children who have cognitive impairment.

Footnotes

Conflict of Interest: Jordan Klein declares that she has no conflict of interest. Connor Kerns declares that she has no conflict of interest. Abigail Hogan declares that she has no conflict of interest. Sara Matherly declares that she has no conflict of interest. Jane Roberts declares that she has no conflict of interest.

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