How do children with intellectual disabilities regulate their emotions? The views of parents

ABSTRACT

Background

Compared to their typically developing peers, children and adolescents with intellectual disabilities are at an increased risk of developing emotion regulation difficulties, this is especially the case for autistic individuals with intellectual disabilities. To better understand the emotion regulation experiences of children and adolescents with intellectual disabilities, the views of parents were considered through the lens of one of the leading emotion regulation frameworks, the process model of emotion regulation.

Method

Twenty parents participated in semi-structured interviews.

Results

Thematic analysis supported the relevance of the process model to this population; and identified additional themes and sub-themes. Parental perspectives also differed between parents with autistic children with intellectual disabilities, compared to parents whose children were reported to only have a diagnosis of intellectual disability.

Conclusions

These identified themes could guide the development of an emotion regulation measure founded on the process model for this population.

KEYWORDS:

• Children and adolescents
• emotion regulation
• intellectual disability
• parent perspectives
• autism spectrum disorder

Children and adolescents with intellectual disabilities experience elevated emotion dysregulation compared to their typically developing peers (Munir, 2016). For between 30% and 50% of these children, this dysregulation presents as a co-occurring mental illness (Einfeld et al., 2011), while 48–100% present with behaviours of concern (BOC) in home settings (Grenier-Martin & Rivard, 2022). BOC are often categorised as: property damage, non-compliance, physical aggression, overactivity, self-harm, temper “tantrums,” running away, repetitive questions, screaming, sexualised behaviour, stealing, stripping, and smearing faeces (Emerson et al., 2001; Emerson & Einfeld, 2011). For individuals with intellectual disabilities, the occurrence of both co-occurring mental illnesses and BOC are associated with reduced emotional wellbeing, quality of life, future community integration, and employment success (Munir, 2016; Svetlana et al., 2018).

A common co-occurring diagnosis in this population is autism, which is diagnosed in 18–35% of individuals with an intellectual disability (Dunn et al., 2018; Maenner et al., 2020). Of note, a dual diagnosis is related to different mental illness profiles. For instance, autistic individuals with intellectual disabilities (A-ID), are 2.5 times more likely than individuals with only an intellectual disability (O-ID) to experience emotion dysregulation (Bakken et al., 2010). Interestingly, anxiety is thought to occur more often in A-ID, while depression relatively occurs more often in O-ID (Bakken et al., 2010). The heightened prevalence of emotion dysregulation among A-ID is associated with a combination of autistic traits, such as, sensory sensitivity, inflexible behaviours, and rigid thoughts (American Psychiatric Association, 2022). These factors are typically correlated with emotion dysregulation (Hollocks et al., 2022; Mazefsky et al., 2013). Additionally, this increased risk may be exacerbated by the use of maladaptive strategies, such as suppression or avoidance (Mazefsky et al., 2013; Samson et al., 2012). Considering these complexities, we need to employ a well-accepted emotion regulation theoretical framework in order to better understand the emotion regulation experiences of O-ID.

Emotion regulation is comprised of several elements: shaping emotions, timing emotions, and how emotions are expressed or experienced (Gross, 2014). In this sense, emotion regulation is inclusive of adaptive and maladaptive strategies. Additionally, the emotion regulation process can be influenced by numerous factors across the biopsychosocial landscape (Gross, 2014). One of the leading emotion regulation frameworks, the process model of emotion regulation, is particularly suited to conceptualising the emotion regulation experiences of children and adolescents with intellectual disabilities, as the model focuses on expressions of emotion dysregulation, regardless of diagnosis (Gross, 2014). As such, the process model is aligned with the recommended transdiagnostic approach for this population, recommended due to the high prevalence of co-occurring diagnoses (Astle et al., 2022; England-Mason, 2020). The model highlights five cyclic emotion regulation opportunities: situation selection, situation modification, attentional deployment, cognitive change, and response modulation (Gross, 2014); see definitions in Box 1. In essence, when an individual becomes aware of a situation and the associated emotional valence, they may either seek out or avoid the situation (i.e., situation selection). When a situation occurs, the individual may also modify the physical environment to regulate their emotions (i.e., situation modification), as well as shift their attention to facilitate regulation (i.e., attentional deployment). The individual may then modify their appraisal of a situation to manage the emotional impact (i.e., cognitive change). After an emotional response has been activated, the individual may attempt to alter the associated experiential, behavioural and physiological response (i.e., response modulation). The activation of these emotion regulation domains then alters the original situation, thus creating a new situation and propagating the emotion regulation process (Gross, 2015). Although the process model is one of the leading emotion regulation paradigms (Gross, 2014), the framework has only sparsely been applied to children and adolescents with intellectual disabilities (Girgis et al., 2024).

Table 1. Demographic data of parents and their children.

Demographics
Parents	N = 20
Age	42.77 (6.35)
Gender (F:M)	15:5
Ethnicity	Caucasian (10) Aboriginal and/or Torres Strait Islander (2) Asian (3) South African (1)
Employed	N = 11
Marital status	Married (13) De facto (1) Single (5) Widowed (1)
Total children in family	2.6 (1.12)
Children and adolescents	N = 19
Age	13.26 (4.28)
Age range	6–21
Demographics
Identified gender (F:M)	11:8
Diagnosis	Intellectual disability (14) Global developmental delay (2) Downs Syndrome (3)
Severity of intellectual disability	Mild (7) Mild-Moderate (2) Moderate (7) Severe (3)
Co-occurring diagnoses*	Autism (12; N = 6 based on parental/psychological reports, N = 6 based on DBC-ASA threshold) Anxiety (2) Oppositional defiant disorder (2) Attention-deficit/hyperactivity disorder (2) Epilepsy (1) Obsessive compulsive disorder (1) Communication disorder (1) Cerebral palsy (1)
Communication type	Speech-based communication (18) Non-speech using (1)

Note. *Several children and adolescents had multiple co-occurring conditions.

One attempt has been made to better understand the emotion regulation experiences of children and adolescents with intellectual disabilities within the context of the process model. Teacher perspectives from schools for students with intellectual disabilities were considered using focus groups, and the findings indicated the process model was applicable to children and adolescents with intellectual disabilities. Various adaptive and maladaptive emotion regulation strategies used by this population were also identified, for example, sensory supports, meditation, self-harm, and aggression. However, differences between autistic and non-autistic children and adolescents with intellectual disabilities were not considered, nor were home settings or parental perspectives. As such, further confirmation is needed as to whether the process model generalises to both these populations and are applicable in these broader contexts. This can be achieved through the input of key observers, such as parents.

Box 1. Definitions and examples of the five domains of the process model of emotion regulation as based on Gross (2014).

Domain	Definition	Example
Situation selection	An individual first becomes aware of an upcoming situation and the associated emotional reaction. This leads them to either initiate or avoid the situation.	A child avoiding bath time by hiding or a child requesting their birthday presents early.
Situation modification	When a situation has commenced the individual can modify the environment to alter the emotional impact.	Using headphones to help with homework or chores completion.
Attentional deployment	The ability to shift attentional focus. Redirecting attention can be grouped into three categories. Distraction: the ability to either redirect attention to non-emotional aspects of a situation or away from the situation entirely. Concentration: attention is sustained by the engagement of tasks which occupy finite cognitive abilities. Rumination: directs attention to emotions and	Distraction: child averting their eye gaze and focusing on a toy rather than their parents arguing. Concentration: when a child is concentrating on a YouTube video. Rumination: when an adolescent worries about hypothetical threats.
Domain	Definition	Example
	related consequences.
Cognitive change	The individual evaluates whether an event can be managed within the context of their goals.	Reframing is one strategy, wherein an adolescent engages in self talk about being excited instead of anxious when presenting a class speech.
Response modulation	This domain occurs later in the emotion regulation process and focuses on changing the trajectory of behavioural, experiential, or physiological responses.	When an adolescent is behaving aggressively and then walks around their school to reduce this state.

Note: Reprinted from “A systematic review of emotion regulation measurement in children and adolescents diagnosed with intellectual disabilities” by Girgis et al., 2021, Journal of Intellectual & Developmental Disability, p. 2. Copyright 2020 by Taylor and Francis Group.

This study aimed to build on teacher viewpoints of emotion regulation through the lens of the process model of emotion regulation (Girgis et al., 2024), by examining parental perspectives on the emotion regulation and dysregulation experiences of children and adolescents with intellectual disabilities. This will serve to further clarify the emotion regulation experiences of children and adolescents with intellectual disabilities, consistent with best practice standards which promote multi-informant perspectives on childhood difficulties (De Los Reyes et al., 2015). Given the prevalence of autism in this population, it follows that co-occurring autism should also be considered. The study used a qualitative approach as an initial step to evaluate the suitability of the process model for children and adolescents with intellectual disabilities.

Method

Participants

Parents with children with intellectual disabilities, were recruited from social media groups, specific purpose schools, and specialist service providers. Twenty parents representing 19 children and adolescents with intellectual disabilities participated in this study. An intellectual disability diagnosis was confirmed either via the provision of a psychological report, specialist funding approval from the Australian National Disability Insurance Scheme (NDIS), or the child’s attendance at a purpose-built school (a school specifically catering for students with intellectual disabilities). Intellectual disability severity was determined via the provision of a psychological report, or disclosure from either the parent or school. Communication type was determined on the basis of parental disclosure. The children and adolescents of participating parents had mild to severe intellectual disabilities, and several had co-occurring diagnoses. On the basis of psychological and parent reports, six of the children and adolescents had a diagnosis of autism, while a further six met the threshold for autism via the Developmental Behaviour Checklist-Autism Screening Algorithm (DBC-ASA; Brereton et al., 2002).

Ethics approval was granted for this study by the University of Technology Sydney Human Research Ethics Committee (approval number: ETH16-0925).

Measures

Developmental behaviour checklist-autism screening algorithm (DBC-ASA)

The DBC-ASA (Brereton et al., 2002) is a 29-item measure that screens for autism spectrum disorder in children and adolescents with intellectual disabilities and has good sensitivity 0.86 (95% CI 0.80–0.91), specificity 0.69 (95% CI 0.62–0.76), and internal consistency (α = .94). The DBC-ASA was completed by parents to screen for autism, and the recommended score of ≥17 was used as the threshold. In total, 12 of the 19 children and adolescents either had a reported diagnosis of autism or were above threshold for autism on the DBC-ASA (Brereton et al., 2002).

The COnsolidated criteria for REporting Qualitative research Checklist (COREQ; Tong et al., 2007) was used to assess the procedure, see Appendix.

Procedure

Individual phone interviews were completed by the lead author, a female clinical psychologist and PhD candidate. The interviews were approximately one hour and occurred once per parent participant; one interview included both parents. Interviews were semi-structured. Participants were first asked about their child’s emotion regulation and dysregulation experiences and any known triggers or uses of adaptive/maladaptive strategies across the home setting. Likewise, participants were then asked if their child experienced emotion regulation or dysregulation experiences within the context of the process model domains, with each domain being explored independently and in order (i.e., situation selection, situation modification, attentional deployment, cognitive change, and response modulation; Gross, 2014). Interviews were recorded and transcribed by a transcription service provider, and field notes were taken during and after the interviews. Participants were compensated for participation with an AUD$20 (≈USD$13.00) gift card.

Data analysis

NVivo 12, a qualitative analysis software (QSR International Pty Ltd, 2019) was used to organise transcripts to aide with the thematic analysis process. Field notes were also consulted during the analysis. The analysis was directed by Braun and Clarke's (2006) guide and used a reflexive deductive approach as the data was considered through the process model of emotion regulation (Gross, 2014). The analysis consisted of forming initial thoughts after reading the transcripts several times. These thoughts were organised into several codes associated with the five process model domains (i.e., situation selection, situation modification, attentional deployment, cognitive change, and response modulation; Gross, 2014). Unconnected reoccurring codes were also noted. These codes were consolidated into preliminary sub-themes and themes, and cross-verified against the transcripts. The sub-themes and themes were then clarified, named, and definitions were established. Finally, quotes were selected to represent the themes in a consolidated report.

As only one coder is recommended by Braun and Clarke (2006) only the lead author (MG) completed the thematic analysis. The second (JP) and third (IK) authors reviewed the identified themes and sub-themes, offered insights, and further refined the consolidated report. Reliability checks are not recommended as Braun and Clarke (2006) state the purpose of the analysis is to thoughtfully engage with the data and synthesise themes guided by theoretical frameworks, rather than to seek consensus. Consistent with this underpinning, prior disability research has explored perspectives using a single coder (Lester, 2014; Maciejewska, 2020).

Results

Demographic data

Demographic information of parents and their children was collected, specifically: age, identified gender, ethnicity of the parent and their child, parental employment and marital status, total number of children in the family, the child’s intellectual disability diagnosis and severity, co-occurring diagnoses, and communication type (see Table 1).

Findings indicated the five domains of the process model were relevant for children and adolescents with intellectual disabilities (i.e., situation selection, situation modification, attentional deployment, cognitive change, and response modulation; Gross, 2014). Further analysis also identified additional themes and sub-themes, see Table 2. Relevant participant demographics were paired with example quotes and are displayed in the following order: mother/father, child’s age, child’s gender, severity of intellectual disability, and whether the child was deemed to have a dual diagnosis of autism and intellectual disability (i.e., A-ID) or only a diagnosis of intellectual disability (i.e., O-ID). For example, in the case of a mother reporting about their 14 year old male autistic child with a moderate intellectual disability, this would be indicated by: mother, 14, male, moderate ID, A-ID. Whereas if that child was reported to have a diagnosis of intellectual disability only, this would be indicated by: mother, 14, male, moderate ID, O-ID.

Table 2. Themes and sub-themes.

Themes	Sub-themes
Situation selection	Managing stimulation
	Location shifts
	Selection acceleration and deceleration
	Selection inflexibility
	Selection incapable
Situation modification	Incorporating or removing sensory elements
	Security within connection
Attentional deployment	Distraction
	Concentration
	Rumination
	Worry
Cognitive change	Cognitive distortions
	Cognitive restructuring
	Prompting cognitive change in others
Response modulation	Self-harm
	Aggressive behaviours
	Non-compliance
	Physiological responses
	Repetitive behaviours
	Escape
	Expressive suppression
	Meditation
	Medication
	Meeting sensory needs
	Communication
Limited emotional granularity
Limited metacognition
External emotion regulation	External situation selection
	External situation modification
	External attentional deployment
	External cognitive change
	External response modulation

Situation selection

Parental descriptions were consistent with this domain, as the children and adolescents were described as selecting situations by either seeking out or avoiding environments or interactions to self-regulate. The following sub-themes were also identified: managing sensory stimulation, location shifts, selection acceleration and deceleration, selection inflexibility, and selection incapable.

Managing stimulation

Parents reported their children indicated preferences for and sought out the following situations: TV, games, sensory items, gifts, activities, pets, trampoline, water-based activities like swimming or bathing, iPad, slime, help from family, and social connection (i.e., they sought out friends and family). Time outs were sought, “Well, more recently we've had a few issues with situations arising, and so him having to learn [strategies]. So, one of them is, he can ask for time out” (mother, 14, male, moderate, A-ID). Situations were prevented or circumvented via avoidance, escape, absconding, and withdrawing into bedrooms or other quiet areas. The data indicates an overlap between avoiding new situations and simultaneously seeking out pleasant or preferred situations. The self-management of sensory stimulation was emphasised with speech-based requests, arguments, refusal to leave the room, physically blocking access, ignoring, and/or speech-based aggression.

Location shifts

Location shifts were reported within the context of managing overstimulation, such as moving to another area, “ … sometimes he goes and sits on the toilet and plays games” (mother, male, 12, mild/moderate, O-ID). Likewise, withdrawing and walking or running away, were used to avoid the arrival of situations. At times, these location shifts were enforced via hiding under blankets, placing barriers, and requesting others to leave.

Selection acceleration and deceleration

Parental reports indicated the arrival of new situations could be sped up, by seeking out gifts early (i.e., birthday or Christmas present), waiting in the car ahead of the family, or waiting by the front door. Similarly, tasks could also be sped up to finish the situation sooner, “She will come home and start a project or homework … she wanted [it] over, and once it's done, it's done” (mother, 11, female, mild, O-ID). Alternatively, the arrival of new situations could also be slowed down with excuses, negotiations, requests, or dawdling, “She's taking [her] time [doing chores]” (father, 16, female, mild, O-ID).

Selection inflexibility

Difficulties transitioning to new situations were also reported within the situation selection domain, particularly if a required sequence or task needed to be completed, “changing schedule is a big thing” (mother, 12, male, mild, A-ID).

Selection incapable

Parental reports suggested their children were at times unable to select situations “I think that's more of a danger type phase … [I tell him to] ‘move, move, move’ or something and he'll just freeze and look at me … he doesn't know what to do” (mother, 14, male, moderate, A-ID). At times their children could not direct situation selection due to minimal curiosity regarding their environments “When she's overwhelmed, she'll withdrawal … and just kind of sit there and be … a passive observer” (mother, 6, female, mild/moderate, O-ID).

Situation modification

Parental descriptions were aligned with this domain, as their children were able to modify situations with environmental adjustments. Two sub-themes were also identified, incorporating or removing sensory elements, and security within connection.

Incorporating or removing sensory elements

Environmental situation modifications were made by adding or removing sensory stimuli. The following situation modifications were described: phones, headphones, holding favourite toys or items, repetitive movements, listening to music, eating, sensory items and activities, wandering or pacing, holding onto pets or parents, and using iPads, “We find the iPad, is like a security blanket, he's safe. Not just safe, he can cope within, when he's got that, when he's in his safe zone and … [in] control” (mother, 7, male, severe, A-ID). Likewise, children and adolescents were reported to reduce sensory input by covering their face or eyes, closing their eyes, using noise cancelling headphones, whispering, refusal to move locations or to communicate via speech, avoiding triggers, sitting under blankets, staying in the bathroom, ignoring others, removing soiled clothing, and hiding items. They also covered the eyes, ears, and mouths of their parents. The children and adolescents also engaged in self-directed rules, which included, sitting in the same seat in the car, sleeping with a preferred item, engaging in a set sequence of sensory play, organising and lining up items, encouraging others to follow rules (i.e., knocking before entering their bedroom), and moving around furniture.

As seen in the situation selection domain, children and adolescents also modified situations via managing sensory elements through the incorporation of routine, location shifts, and by accelerating or decelerating situations.

Security within connection

Situation modification was also described as attempts to feel safe via social connection. This was evidenced by seeking physical proximity to their parents when distressed, which also included, holding their parent’s hand, and following them or other familiar individuals, “For instance, he's really scared of the stair escalator … he refuses to go up and down it unless I'm either behind him or in front of him and he's holding on to me” (mother, male, 12, mild/moderate, O-ID).

Attentional deployment

Parental accounts were compatible with the attentional deployment domain. Four sub-themes were identified: distraction, concentration, rumination, and worry.

Distraction

Parental reports indicated attentional deployment was in part expressed as distraction via the following: sensory items, daydreams, special interests, using an iPad, phone or computer, live streaming, gaming, interacting with pets, listening to music or the radio, eating, singing, watching YouTube, reading books, playing with toys, colouring in, crafting, cooking, dancing, and gardening. Parents also externally prompted these interests. They also ignored others and would avert their eye gaze, particularly when others were arguing. The children and adolescents could also be easily distracted, and easily forgot about distressing events; while others were unable to be distracted.

Concentration

Parental accounts suggested concentration was one manifestation of attentional deployment, which was expressed as directed eye gaze, repetitive questions, and focused engagement. Parents reported distractions could progress into sustained concentration, particularly if related to a specific interest. However, this level of concentration could lead to transition difficulties, “… you can wave your hand in front of him, and you’ve got to really get him back [when using the iPad]” (mother, 13, male, moderate, A-ID). Along this line, some distractors were used as a mode of escapism. Additionally, concentration occurred in the presence of confrontation (i.e., argument with parent) or when exposed to danger (i.e., seeing a snake). Medication was also reported to be used to aide concentration.

Rumination

Parental reports indicated rumination was one expression of attentional deployment. Rumination was based on past distressing events and was related to cognitive rigidity “he just could not let it go” (mother, 14, male, moderate, A-ID). Speech-based rumination content included: changes in routine, fear of animals, fear of change, interactions with peers, being told no, social pressures, past grievances with others, and the health of their family and friends. Ruminations could also be expressed as repetitive circular conversations and could be triggered by incorrect recall. Parents did acknowledge difficulties discerning their child’s ruminations due to limited expressive language.

Worry

Parental accounts indicated worry regarding future concerns was one representation of attentional deployment. Common topics included: changes in routines, exposure to new places, attending school camps, being taken away from their family, the health of family members, and death, “ … he'll ask questions [about] death, thinking it's going to happen to him” (mother, male, 12, mild/moderate, O-ID).

Cognitive change

Parental descriptions were congruent with this domain. However, as this is a domain with limited behavioural representations, this was primarily assessed via speech-based expressions, although the use of assistive technology was also considered for non-speech users. Parents also reported limited insights into their child’s cognitions, further impacting the evaluation of this domain. Overall, the following sub-themes were identified: cognitive distortions, cognitive restructuring, and prompting cognitive change in others.

Cognitive distortions

Parental reports indicated the cognitive change domain could be expressed as the following cognitive distortions:

• Labelling. They label themselves and others “ … She'll call [herself] stupid” (mother, 21, female, mild, A-ID).

• Mental filter, selective abstraction. Focus was placed on the negative aspects of events “ … she did bring up the negatives” (father, 9, female, severe, A-ID).

• Dichotomous, black and white thinking. Cognitions were “very black and white” (father, 16, male, mild, A-ID), and they responded to grievances with extreme options, “ … [he would say] ‘People just treating me so poorly … just feel like bashing them’” (mother, male, 12, mild/moderate, O-ID).

• Overgeneralisation. Beliefs were generalised, “ … everyone's stupid” (father, 16, male, mild, A-ID).

• Catastrophising. Focus was placed on the worst outcome, “ … he'll catastrophise every situation, he’ll blow it completely out of proportion” (mother, 12, male, mild, A-ID).

• Emotional reasoning. Negative self-beliefs were treated as fact, “ … she started questioning herself. Like … ‘I'm very rude … I'm not good’” (mother, 13 female, moderate, A-ID). This distortion could also be expressed without speech, “ … he [thinks he’s] naughty, so he'll go to … the word naughty [on his communication device] and [I say] you’re not naughty, you’re just not making good choices … ” (mother, 14, male, moderate, A-ID).

• Personalisation and blame. Blame was unnecessarily directed towards themselves and others, “ … sometimes it's not [her] fault, but I don't know what comes in her mind and she thinks that it’s her fault” (mother, 13 female, moderate, A-ID).

Cognitive restructuring

According to parental reports, the cognitive change domain could manifest as cognitive restructuring. However, this skill was described as diminished when the child/adolescent was dysregulated. At such times external support was required alongside time to deescalate, “ … if he calms down and wants to say something he'll say, ‘I'm sorry, I'm ready to talk to you’” (mother, male, 12, mild/moderate, O-ID). The following cognitive restructuring sub-themes were evident:

• Positive affirmations or mantras. Common repetitive phrasings were used when distressed, “I’m better now,” “don’t worry, I'm fine,” “I’m ready now,” and using “I’m not scared” when encouraging themselves. This was also reflected without speech via a thumbs up.

• Generate alternative. Alternatives were considered when distressed, “She starts saying … ‘I will act according to that person and try to be his friend, because he says that you are not a good girl. God is not happy. So, I try my best to show that no, God is happy for me’” (mother, 13 female, moderate, A-ID).

• Reframing. Interpersonal difficulties with friends could be reframed, “She said ‘[he] is angry [with] me … I'm going to throw [his] bag in the garbage now.’ And … after … she said, ‘no, he's my best friend. And … I am not good. He's a good boy’” (mother, 13 female, moderate, A-ID).

• Perspective taking. Some children were reported to comprehend others distress and offer solutions, “He will tend to ask if you’re okay, he will sometimes offer a hug” (mother, 14, male, moderate, A-ID).

• Problem solving. They engaged in negotiation and select solutions, particularly requesting help, “If he's very frustrated or angry he'll come sit by me and say, ‘Mum, I don't like this’” (mother, male, 12, mild/moderate, O-ID). Additionally, they could also offer aide, “ … when her sister's upset, she'll [get] … her a water … doll … cuddle” (mother, 6, female, mild/moderate, O-ID).

• Asking questions/seeking clarification. They asked questions and sought clarification, particularly to clarify social situations and dynamics, “He'll usually ask ‘what's going on’ … ‘what are you talking about’” (mother, 12, male, mild, A-ID).

• Positivity reorientation. They used a positive lens, “If … he feels … he's being reprimanded … [he’ll] try to change the subject, try to point out something good he's done instead” (mother, 14, male, moderate, A-ID). Alternatively, another strategy was augmenting the story to have a better outcome.

Prompting cognitive change in others

The children and adolescents assisted others with cognitive change via problem solving, offering help, and reframing events, “ … if I'm really upset, [he’ll say] ‘It's okay Mum, let's try something else,’ or, ‘Don't worry about it, it's alright’” (mother, male, 12, mild/moderate, O-ID).

Response modulation

Parental disclosures were aligned with the response modulation domain. This domain was associated with observable behaviours. The following sub-themes were also identified: self-harm, aggressive behaviours, non-compliance, physiological responses, repetitive behaviours, escape, expressive suppression, meditation, medication, meeting sensory needs, and communication.

Self-harm

Response modulation was expressed as the following self-harm behaviours when distressed: biting, scratching, pinching, head banging, punching head, pulling hair, squeezing limbs, hitting self with objects, cutting self, and hitting their body. Self-harming behaviours could progress to significant injury, and threats of self-harm were also reported. Self-harm could also occur within the context of excitement, “head banging that's actually used as an excitement thing, when he's very, very excited. When he's going to bed. He'll head butt his pillow” (mother, 7, male, severe, A-ID).

Aggressive behaviours

Response modulation also manifested as aggressive behaviours. Parents reported aggressive behaviours were accompanied by vocalisations and were expressed as physical and verbal/speech-based aggression, such as: yelling, screaming, swearing, threats, arguing, shouting, slamming doors, stomping feet, and refusal to move. When the aggression was directed towards others, the behaviour included: spitting, kicking, punching, shoving, pushing, fighting, grabbing, pinching, and hitting. Property damage occurred by way of breaking doors and windows, and throwing items, which could escalate to police involvement.

Non-compliance

Response modulation included non-compliance, which was described as refusals, laying on the floor and refusing to move, as well as barring entry to their room, “[she] … sits [behind] the door and you can't get in the room” (mother, 18, female, moderate, A-ID).

Physiological responses

Response modulation manifested as physiological responses including: crying, clenching hands, tense body, “Not breathing properly,” hyperactive, restless, clenching fist, fidgeting, squirming, and “stimming.” Parents also broadly described “meltdowns” and “tantrums.” Parents also indicated a “freeze” or “shut down” response during distressing events, which was accompanied by a “quiet voice,” and congruent facial expressions. Overexcitement was also related to increased psychomotor movement “bouncing on the spot” and pressured speech.

Repetitive behaviours

Response modulation included the following repetitive behaviours: saying phrases from movies, questions, storytelling, watching movies, organising items, and movements such as running, and vocalisations.

Escape

Response modulation was expressed as escape via playing video games, walking away, removing oneself from situations, running away, going to another room, absconding, withdrawing, and leaving a room, “ … it happens at school a bit … he will just get up and leave the classroom if there's a situation that he's not comfortable with” (father, 16, male, mild, A-ID).

Expressive suppression

Parental reports indicated response modulation encapsulated expressive suppression. This was expressed as hiding positive and negative emotions, denying emotions, and reporting distress due to an unrelated event. Suppression was also used to facilitate social connection, “ … when she's trying to … please others [she’ll] say, ‘I'm not angry’” (father, 13 female, moderate, A-ID).

Meditation

Meditative practices were used to regulate emotion within the response modulation domain, such as counting to 10, yoga, visualisation, and deep breathing, though usually these required prompting. However, for some, mentioning meditation could lead to escalation, “ … if they're suggested, he gets quite aggressive” (mother, 12, male, mild, A-ID).

Medication

Medication was used to assist with heightened states and reducing baselines within the response modulation domain, “ … it still depends on what point his regulation is under control. So, on the dextroamphetamine, the regulation is a lot more and he's a lot more regular and there's not so many extremes” (mother, 7, male, severe, A-ID).

Meeting sensory needs

Parents reported sensory elements were used to manage distress within the response modulation domain, such as, surrounding oneself with favourite items, listening to music, looking at favourite images, jumping on the trampoline, arts and crafts, bouncing, accessing a sensory box, squishing and squeezing sensory items, swinging rope, taking a preferred toy with them, watching TV, playing with toys or video games, riding a bike, petting animals, engaging in vocalisations, running, walking, pacing, massages, sensory brush, using weight or pressure, and watching items move back and forth. Sensory stimulation was also managed by removing stimuli such as noise, asking for time out, going to sleep, walking away, and going to their room. Parents would also give their child personal space, “ … you just move everyone and everything away from him and don't engage, absolutely no eye contact and just wait for him to calm down” (mother, 12, male, mild, A-ID).

Communication

Parents encouraged their children to communicate their emotions when distressed (i.e., within the response modulation domain). Communication was either via speech or assistive technology, “ … with the App [communication device] … it's [got] visuals … so it can really help him to calm down. I mean it takes a while, but it does work” (mother, 14, male, moderate, A-ID). However, communication for some was made difficult by expressive language difficulties.

Additional themes

Three additional themes distinct from the process model domains were identified: limited emotional granularity, limited metacognition, and external emotion regulation.

Limited emotional granularity

Parents reported emotion identification was limited; this skill was further compromised when the children and adolescents were distressed. Additionally, the breadth of emotional descriptors was limited to: sad, happy, frustrated, annoyed, good, pissed off, excited, awesome, unreal, down, unhappy, not very happy, mad, upset, hopeless, nervous, sick, afraid, naughty, tired, cranky, silly, love, hate, bad mood, jealous, moody, worried, overwhelmed, and “shitty.” Parents reported that they were unsure if their children understood the emotional descriptors or if they were copying others, “ … it's very rare that he would actually say the word without [you] saying it first” (mother, 7, male, severe, A-ID). Emotions were also mislabelled, for instance, “ … [she would say] ‘I hate them’ … so we just figured that [it was] her way of saying I miss him … because her brother, he lives with us, but he works … and he's not here [at home]” (mother, 7, male, severe, A-ID). Parents assisted their children by providing visual aids, language suggestions, and extra time. Although some expressive language difficulties could not be overcome, “she doesn't have the … vocabulary to really hone in on if you wanted to get too specific” (mother, 21, female, mild, A-ID).

Limited metacognition

Metacognition pertains to cognitive insight, which influences the ability to use cognitive change. Insight was demonstrated via speech-based disclosures to parents, siblings, and toys, or via self-talk. Insight was also aided by assistive technology. Parents observed metacognitive ability at four levels:

1. Limited awareness of current emotional status and duration, “she'll say to me, ‘I had a bad day today mum. I'm upset now, or I've been upset all day’” (mother, 11, female, mild, O-ID).

2. Less nuanced expressions, “me not very happy about that … me don’t like it, me don't like it” (father, 9, female, severe, A-ID).

3. Difficulty expressing cognitions, “I think he doesn't tell anyone there’s something wrong because he doesn’t know how to express that” (mother, 14, male, moderate, A-ID).

4. General unawareness of cognitions, “ … he's not aware of them” (mother, 13, male, moderate, A-ID).

External emotion regulation

Parents reported they assisted their children to regulate their emotions across all emotion regulation domains:

• External situation selection. Parents facilitated situation selection by removing or avoiding triggers and managing sensory stimulation by either offering distractions, redirecting their child to move into a quiet space or removing themselves to form a quiet space. Alternatively, they also enticed their children to return to family settings with preferred items, encouraged their child to join activities, and provided reassurance around selected situations, “ … if we reassure [her] about things or that something's okay … she'll believe us and then do it” (father, 19, female, mild, O-ID).

• External situation modification. Parents provided aide during difficult situations via the following: engaging in redirection, negotiation, prompting quiet time or location shifts, enticing their children back with the use of their favourite TV programs, providing mediation between their children and others, and assisting with transitions by using well-timed reminders regarding upcoming events. Parents also provided sensory items or removed sensory elements during difficult situations, “Generally no eye contact, not touching him and giving him space and just moving everybody away from him” (mother, 12, male, mild, A-ID).

• External attentional deployment. Parents utilised distractions and redirection, particularly: iPads, sensory items, food, snacks, water, music, massages, and engaged in singing, humour and/or play. Distractions could be quickly cycled through, “ … just quick engagement … like blowing bubbles real quick … and we move on to the next thing” (mother, 6, female, mild/moderate, O-ID). Dependent on the child’s interest, concentration could occur once redirected. Regarding rumination and worry, parents encouraged flexibility by explaining the reasoning behind routine changes, as well as providing general reassurance, and discouraged repetitive thinking, “ … we know you’re sad, but we can't keep going back to that” (mother, 21, female, mild, A-ID). These strategies also overlapped with the cognitive change domain.

• External cognitive change. Parents offered reassurances, reframed situations, used positivity, encouraged problem solving, perspective taking and reflection, and normalised and validated experiences, “it's okay to feel like that. It sucks that you feel like that” (mother, 21, female, mild, A-ID). Parents also discouraged blaming others.

• External response modulation. The assistance provided by parents overlaps with the above domains. Parents managed sensory stimulation, provided reassurance, encouraged meditative practices, removed triggers, and facilitated access to medication.

Variations between parental perspectives

It was apparent parental perspectives varied depending on whether their child had a dual diagnosis of autism and intellectual disability (A-ID) or if their child was only diagnosed with an intellectual disability (O-ID). Parents with A-ID children tended to provide examples relating to location shifts, rumination, concentration, selection inflexibility, cognitive distortions, self-harm, aggressive behaviours, medication, expressive suppression, escape, limited emotional granularity, and all external regulation sub-themes; particularly, external situation selection and modification. Parents with children with O-ID more often reported security within connection, cognitive restructuring, promoting cognitive change in others, and worry. All other subthemes were reported relatively equally by both parent groups. Extensive comparisons could not be completed due to the qualitative nature of this study and the limited sample size.

Discussion

This research is the first we know of to investigate the views of parents on the emotion regulation experiences of children and adolescents with intellectual disabilities, through the process model of emotion regulation (Gross, 2014). The findings indicated the five domains of the process model were applicable to this population (i.e., situation selection, situation modification, attentional deployment, cognitive change, and response modulation). The additional themes of limited emotional granularity, limited metacognition, and external emotion regulation, were also identified. Moreover, some variation between reported emotion regulation and dysregulation was noted between parents with A-ID children and parents with children with O-ID.

Parents reported their children used situation selection to regulate their emotions, as demonstrated through the sub-themes of “managing stimulation,” “location shifts,” and “selection acceleration and deceleration.” The “managing stimulation” sub-theme was endorsed by all participants, the utility of this strategy is unsurprising considering adverse sensory stimulation impacts emotion regulation strategies (Mazefsky et al., 2013). Although this strategy supported emotion regulation, it included maladaptive avoidance, which is a commonly used coping strategy among this population and known to moderate levels of anxiety (Dekker & Koot, 2003; Rudaz et al., 2017). In addition, expressions of situation selection were also demonstrated through the sub-themes: “selection inflexibility,” and “selection incapable.” Parental reports also suggest the situation selection sub-themes overlap with the situation modification domain, with modification in this population presenting as “incorporating or removing sensory elements” and “security within connection.”

Based on parental reports, the attentional deployment domain was relevant to this population. The “distraction” and “concentration” sub-themes overlapped, as distraction could lead to concentration when children and adolescents were engaged in a preferred activity. Parents also indicated concentration difficulties, this is known to occur at an increased rate when comparing children with and without intellectual disabilities (Neece et al., 2011). Parents also supported the “worry” and “rumination” sub-themes; typically, worry is associated with anxiety based disorders, while rumination is associated with depression (Watkins et al., 2005).

The cognitive change domain appeared to be relevant for this population, however, as with the “rumination” sub-theme, the evaluation of this domain was reliant on speech-based expressions. Although, the use of communication devices offered additional insight. The data overlapped with the pre-established categories of “cognitive distortion” and “cognitive restructuring” (Hofmann, 2013; Yurica & DiTomasso, 2005). The “rumination” and “worry” sub-themes also overlapped with this domain.

The response modulation domain yielded the greatest breadth of information, due to the associated externalising expressions. The data overlapped with several of the categories of BOC (i.e., property damage, non-compliance, physical aggression, overactivity, self-harm, temper “tantrums,” running away, repetitive questions, and screaming; (Emerson et al., 2001; Emerson & Einfeld, 2011)). However, the BOC categories of sexualised behaviour, stealing, stripping, and smearing faeces were not reported by parents. This could be due to the current sample predominately ranging between the mild-moderate severity range, as BOC are typically expressed more often by individuals with severe and profound intellectual disabilities (Emerson & Einfeld, 2011). Additional sub-themes were also identified: “physiological responses,” “escape,” “repetitive behaviours,” “medication,” “meditation,” “meeting sensory needs,” “expressive suppression,” and “communication.”

Parental perspectives varied between parents with A-ID children, and parents with children with O-ID. Namely, parents with A-ID children more often provided examples in relation to “selection inflexibility,” which aligns with the autism diagnostic sub-criteria of restrictive and repetitive behaviour patterns (American Psychiatric Association, 2022). Likewise, examples typically focused on “incorporating or removing sensory elements,” over “security within connection.” Whilst anxiety is typically more prevalent in the A-ID population, and depression occurs relatively more often in the O-ID population (Bakken et al., 2010); an inverse trend was reported, as parents with A-ID children provided examples of rumination more often, while parents with children with O-ID more often provided examples of worry. This inverse trend could be due to the internal nature of rumination and worry, and the associated observational difficulties. Additionally, parents with A-ID children often provided examples of cognitive distortions. This is unsurprising as cognitive inflexibility tends to predict emotion dysregulation in this population (Hollocks et al., 2022). Conversely, parents with children with O-ID frequently provided examples of cognitive restructuring. This may act as a protective strategy against distortions and associated mental illnesses, as seen in neurotypical children and adolescents (Oud et al., 2019). This protective coping mechanism may also contribute to the relatively lower mental illness prevalence of children and adolescents with O-ID, when compared to A-ID (Bakken et al., 2010). Further trends included higher reports of non-compliance from parents with children with O-ID, while parents with A-ID children more often reported meeting sensory needs, escape, meditation, medication, self-harm, aggressive behaviours, and expressive suppression. However, perceived expressive suppression could be due to intersubjective misunderstanding, as neurotypical individuals can struggle to understand autistics (Mitchell et al., 2021). Overall, the findings supported the suitability of the process model as an emotion regulation framework for this population, and identified differences in parental perspectives between parents with A-ID children and parents with children with O-ID.

In addition to the general support of the applicability of the process model to children and adolescents with intellectual disabilities, the findings also supported the cyclic nature of the process model (Gross, 2015), as several themes and sub-themes overlapped. Primarily, the use of emotion regulation strategies across the five domains of the process model (i.e., situation selection, situation modification, attentional deployment, cognitive change, and response modulation; Gross, 2014), resulted in the formation of new situations and subsequent emotion regulation strategies. The five domains of the process model also overlapped. Specifically, the situation selection and situation modification domains overlapped, while attentional deployment primarily overlapped with cognitive change, and response modulation-based strategies propagated new situations. Additionally, the findings transcended the definition of situation modification, which is defined as “modifying external, physical environments” (Gross, 2014, p. 10). The results indicated this population modifies situations via social connection, in addition to external modifications; which was consistent with teacher perspectives (Girgis et al., 2024). In order to comprehensively reflect this population’s emotion regulation processing, it is recommended the parameters of the situation modification domain be further investigated.

Outside of the process model, three additional themes were identified, limited emotional granularity, limited metacognition, and external emotion regulation. Overall, parents with autistic children provided more external attempts of emotion regulation support. This could be attributed to A-ID children and adolescents typically having a higher prevalence of emotion regulation difficulties (Bakken et al., 2010), thus requiring parents to provide increased support. The greatest support disparity was found within the situation selection and situation modification domains, which may reflect the sensory sensitivity of this population (American Psychiatric Association, 2022).

This study had four primary limitations. The interviews predominantly captured the maternal perspective, and agreement between parents was not determined. The cognitive change domain, and “rumination” and “worry” sub-themes were primarily evaluated using examples of speech-based communication. This limits insights into the emotion regulation processing of the non-speaking population. Although this study included one non-speech using participant, the findings require replication to evaluate this populations emotion regulation experiences. A further limitation was the composition of the A-ID group, as only a portion were formally diagnosed with autism, whilst the rest were above threshold on the DBC-ASA and did not have a formal diagnosis. Whilst trends in parental perspective were observed between parents with A-ID children and parents with children with O-ID, these groups could have differed in other aspects, necessitating the need for further comprehensive evaluation. Lastly, the perspectives of children and adolescents with an intellectual disability remains unknown, and it is unclear if their perspectives would align with their parents.

Conclusion

To our knowledge, this research is the first we know of to investigate the views of parents on the emotion regulation experiences of children and adolescents with intellectual disabilities, through the process model framework (Gross, 2014). Overall, the findings indicate the process model is applicable to this population, however, the definition parameters of the situation modification domain require further investigation to comprehensively capture the emotion regulation experiences of children and adolescents with intellectual disabilities. Moving forward, focus should be placed on assessing the perspectives of children and adolescents with intellectual disabilities on their emotion regulation experiences. Effort should also be made to include children and adolescents that do not use speech and use communication devices. These findings should be compared with the parental perspectives acquired here, and those of educators in previous research (Girgis et al., 2024). Overarching themes could be used to develop an emotion regulation measure – inclusive of a self-report, parent, and teacher version – a much needed resource for this population (Girgis et al., 2021). The findings could also guide the development of strength-based therapies, as autistic and non-autistic children and adolescents with intellectual disabilities may need differing treatment bases, specifically the incorporation of sensory elements for autistics. This study highlights the applicability of the process model of emotion regulation to children and adolescents with intellectual disabilities, and has the potential to inform further emotion regulation research, notably the development of an emotion regulation measure.

Acknowledgements

We thank Dr Lynette Roberts for her contribution to the conceptualisation of this study.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Appendix

The COnsolidated criteria for REporting Qualitative research Checklist (COREQ; Tong et al., 2007).

Table

No.	Item	Description	Section #
Domain 1: Research team and reflexivity
Personal characteristics
1.	Interviewer/facilitator	Which author/s conducted the interview or focus group?	Method
2.	Credentials	What were the researcher's credentials? E.g. PhD, MD	Method
3.	Occupation	What was their occupation at the time of the study?	Method
4.	Gender	Was the researcher male or female?	Method
5.	Experience and training	What experience or training did the researcher have?	Method
Relationship with participants
6.	Relationship established	Was a relationship established prior to study commencement?	Method
7.	Participant knowledge of the interviewer	What did the participants know about the researcher? E.g. Personal goals, reasons for oing the research	Method
8.	Interviewer characteristics	What characteristics were reported about the interviewer/facilitator? E.g. Bias, assumptions, reasons and interests in the research topic	n/a
Domain 2: Study design
Theoretical framework
9.	Methodological orientation and theory	What methodological orientation was stated to underpin the study? E.g. grounded theory, discourse analysis, ethnography, phenomenology, content analysis	Method
Participant selection
10.	Sampling	How were participants selected? E.g. purposive, convenience, consecutive, snowball	Method
11.	Method of approach	How were participants approached? E.g. face-to-face, telephone, mail, email	Method
12.	Sample size	How many participants were in the study?	Method
13.	Non-participation	How many people refused to participate or dropped out? What were the reasons for this?	n/a
Setting
14.	Setting of data collection	Where was the data collected? E.g. home, clinic, workplace	Method
15.	Presence of non-participants	Was anyone else present besides the participants and researchers?	Method
16.	Description of sample	What are the important characteristics of the sample? E.g. demographic data, date	Method
Data collection
17.	Interview guide	Were questions, prompts, guides provided by the authors? Was it pilot tested?	Method
18.	Repeat interviews	Were repeat interviews carried out? If yes, how many?	Method
19.	Audio/visual recording	Did the research use audio or visual recording to collect the data?	Method
20.	Field notes	Were field notes made during and/or after the interview or focus group?	Method
21.	Duration	What was the duration of the interviews or focus group?	Method
22.	Data saturation	Was data saturation discussed?	n/a
23.	Transcripts returned	Were transcripts returned to participants for comment and/or correction?	n/a
Domain 3: analysis and findings
Data analysis
24.	Number of data coders	How many data coders coded the data?	Method
25.	Description of the coding tree	Did authors provide a description of the coding tree?	Results
26.	Derivation of themes	Were themes identified in advance or derived from the data?	Method
27.	Software	What software, if applicable, was used to manage the data?	Method
28.	Participant checking	Did participants provide feedback on the findings?	n/a
Reporting
29.	Quotations presented	Were participant quotations presented to illustrate the themes / findings? Was each quotation identified? E.g. Participant number	Results
30.	Data and findings consistent	Was there consistency between the data presented and the findings?	Results
31.	Clarity of major themes	Were major themes clearly presented in the findings?	Results
32.	Clarity of minor themes	Is there a description of diverse cases or discussion of minor themes?	Results