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Family Experiences of Decreased Sound Tolerance in ASD

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Title: Family Experiences of Decreased Sound Tolerance in ASD
Language: English
Authors: Scheerer, Nichole E. (ORCID 0000-0003-0070-6559), Boucher, Troy Q., Bahmei, Behnaz, Iarocci, Grace, Arzanpour, Siamak, Birmingham, Elina
Source: Journal of Autism and Developmental Disorders. Sep 2022 52(9):4007-4021.
Availability: Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://link.springer.com/
Peer Reviewed: Y
Page Count: 15
Publication Date: 2022
Document Type: Journal Articles
Reports - Research
Descriptors: Experience, Family Relationship, Auditory Perception, Auditory Stimuli, Autism, Pervasive Developmental Disorders, Children, Young Adults
DOI: 10.1007/s10803-021-05282-4
ISSN: 0162-3257
1573-3432
Abstract: Decreased sound tolerance (DST) is the most common sensory difficulty experienced by autistic individuals. Parents of 88 autistic children and young adults between the ages of 3 and 30 described coping strategies and physical and emotional responses used to deal with distressing sounds, and their impact on daily activities. Loud, sudden, and high-pitched sounds were most commonly endorsed as distressing, most often causing autistic children and young adults to cover their ears or yell, while producing stress, irritation, fear, and anxiety. Parents reported warning their child, providing breaks, or avoiding noisy settings as the most used coping strategies. Overall, findings indicate that DST leads to fewer opportunities for autistic children and young adults to participate at home, at school, and in the community. Further, results suggest hyperacusis, misophonia, and phonophobia, subtypes of DST, are present in autistic children and young adults.
Abstractor: As Provided
Entry Date: 2022
Accession Number: EJ1343884
Database: ERIC
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  Value: <anid>AN0158335383;aut01sep.22;2022Aug05.04:14;v2.2.500</anid> <title id="AN0158335383-1">Family Experiences of Decreased Sound Tolerance in ASD </title> <p>Decreased sound tolerance (DST) is the most common sensory difficulty experienced by autistic individuals. Parents of 88 autistic children and young adults between the ages of 3 and 30 described coping strategies and physical and emotional responses used to deal with distressing sounds, and their impact on daily activities. Loud, sudden, and high-pitched sounds were most commonly endorsed as distressing, most often causing autistic children and young adults to cover their ears or yell, while producing stress, irritation, fear, and anxiety. Parents reported warning their child, providing breaks, or avoiding noisy settings as the most used coping strategies. Overall, findings indicate that DST leads to fewer opportunities for autistic children and young adults to participate at home, at school, and in the community. Further, results suggest hyperacusis, misophonia, and phonophobia, subtypes of DST, are present in autistic children and young adults.</p> <p>Keywords: Autism spectrum disorder; Decreased sound tolerance; Misophonia; Hyperacusis; Phonophobia; Sound sensitivity</p> <p>Supplementary Information The online version contains supplementary material available at https://doi.org/10.1007/s10803-021-05282-4.</p> <p>Autism Spectrum disorder (ASD) is a neurodevelopmental disorder that is characterized by restricted and repetitive patterns of behaviour, as well as persistent deficits in social communication and interaction (APA, [<reflink idref="bib3" id="ref1">3</reflink>]). Behavioural responses to sensory stimuli, including both hyper- and hypo-reactivity, are also common for autistic individuals (Ashburner et al., [<reflink idref="bib4" id="ref2">4</reflink>]; Lane et al., [<reflink idref="bib48" id="ref3">48</reflink>], [<reflink idref="bib47" id="ref4">47</reflink>]), with estimates suggesting that 45–95% of autistic individuals demonstrate atypical sensory behaviours (Ben-Sasson et al., [<reflink idref="bib10" id="ref5">10</reflink>]). For example, autistic individuals often report heightened sensitivity to environmental inputs, such as background noise or the flickering of fluorescent lights, commenting that it is difficult to ignore these inputs (Grandin, [<reflink idref="bib24" id="ref6">24</reflink>]; Williams, [<reflink idref="bib76" id="ref7">76</reflink>]). As our everyday lives are spent functioning in complex and unpredictable sensory environments, these sensory differences have been linked to distress and challenging behaviours in autistic individuals (Jasmin et al., [<reflink idref="bib35" id="ref8">35</reflink>]; Little et al., [<reflink idref="bib51" id="ref9">51</reflink>]; Stiegler & Davis, [<reflink idref="bib70" id="ref10">70</reflink>]). In addition, sensory differences have been shown to have downstream effects on other functions including motor, social, and cognitive abilities (Ornitz [<reflink idref="bib59" id="ref11">59</reflink>]; Dawson & Watling, [<reflink idref="bib18" id="ref12">18</reflink>]; Ben-Sasson et al., [<reflink idref="bib9" id="ref13">9</reflink>]). Given that decreased sound tolerance (DST), a reduce tolerance to everyday sounds, is the most common sensory difficulty experienced by autistic individuals (Williams et al., [<reflink idref="bib77" id="ref14">77</reflink>]), the aim of this research is to specifically examine DST in autistic children and young adults in hopes of better understanding the experiences of autistic children and young adults who perceive and/or respond to sounds differently. Further, this study aims to understand the strategies that families of autistic children and young adults are currently using to cope with DST, and the perceived effectiveness of these strategies, in order to better inform future interventions aimed at alleviating the distress associated with DST.</p> <p>Although atypical reactions to the sensory environment are often reported in autistic individuals, reactions are highly variable across the sensory modalities. The auditory modality is most frequently associated with high levels of distress (Dahlgren & Gillberg, [<reflink idref="bib16" id="ref15">16</reflink>]; Gomes et al., [<reflink idref="bib23" id="ref16">23</reflink>]; Hermelin & O'Connor, [<reflink idref="bib32" id="ref17">32</reflink>]; Ornitz, [<reflink idref="bib60" id="ref18">60</reflink>]; Rosenhall et al., [<reflink idref="bib67" id="ref19">67</reflink>]; Talay-Ongan & Wood, [<reflink idref="bib72" id="ref20">72</reflink>]). The prevalence of DST is reported to range from 18 to 69% among autistic children (Danesh et al., [<reflink idref="bib17" id="ref21">17</reflink>]; Rimland & Edelson, [<reflink idref="bib65" id="ref22">65</reflink>]; Rosenhall et al., [<reflink idref="bib67" id="ref23">67</reflink>]). Different types of DST, including hyperacusis, misophonia, and phonophobia, have been characterized in the broader audiology literature, however, clear definitions of these subtypes of DST are only beginning to emerge. <emph>Hyperacusis</emph> has been defined as reduced tolerance of everyday sounds at volumes that would not trouble most individuals (Williams et al., [<reflink idref="bib77" id="ref24">77</reflink>]). Individuals with hyperacusis generally have normal auditory detection thresholds; rather, it appears that their threshold for loudness discomfort is reduced, leading sounds of moderate intensity to be judged as very loud and even painful (Phillips & Carr, [<reflink idref="bib63" id="ref25">63</reflink>]; Williams et al., [<reflink idref="bib77" id="ref26">77</reflink>]). <emph>Misophonia</emph> on the other hand, is a neuropsychiatric condition where "trigger" sounds, which are often repetitive and human-produced (e.g., chewing, lip-smacking, tapping, sniffing, etc.), elicit excessive and inappropriate emotional responses even at low amplitudes (Brout et al., [<reflink idref="bib12" id="ref27">12</reflink>]; Claiborn et al., [<reflink idref="bib15" id="ref28">15</reflink>]; Edelstein et al., [<reflink idref="bib19" id="ref29">19</reflink>]; Jager et al., [<reflink idref="bib36" id="ref30">36</reflink>]). While the specific triggers tend to vary, these trigger sounds consistently produce anger, disgust, and irritation (Jager et al., [<reflink idref="bib36" id="ref31">36</reflink>]), as well as increased autonomic arousal (Edelstein et al., [<reflink idref="bib19" id="ref32">19</reflink>]). <emph>Phonophobia</emph> refers to a specific phobia of particular sounds or classes of sounds. For individuals with phonophobia, their fear of sounds often results in preemptive behaviours including the avoidance of potential sound sources (Jastreboff & Jastreboff, [<reflink idref="bib39" id="ref33">39</reflink>]; Williams et al., [<reflink idref="bib77" id="ref34">77</reflink>]) and covering of one's ears (Weber et al., [<reflink idref="bib75" id="ref35">75</reflink>]). Hyperacusis can be separated into loudness, annoyance, fear, and pain hyperacusis (Tyler et al., [<reflink idref="bib74" id="ref36">74</reflink>]), however, we have adopted an alternative framework proposed by Williams et al. ([<reflink idref="bib77" id="ref37">77</reflink>]), where hyperacusis refers specifically to the DST associated with increased perceived loudness and/or the experience of pain in response to sound, while annoyance and fear hyperacusis can be better classified as misophonia and phonophobia, respectively. Importantly, all of these conditions are present in individuals with normal hearing thresholds (Jastreboff & Jastreboff, [<reflink idref="bib37" id="ref38">37</reflink>]), ruling out peripheral hearing loss and abnormal loudness recruitment as potential causes. While hyperacusis is the most commonly cited condition when referring to DST in autistic individuals (e.g. Khalfa et al., [<reflink idref="bib44" id="ref39">44</reflink>]; Rimland & Edelson, [<reflink idref="bib65" id="ref40">65</reflink>]; Rogers et al., [<reflink idref="bib66" id="ref41">66</reflink>]; Williams et al., [<reflink idref="bib77" id="ref42">77</reflink>]), the precise mechanisms of DST in autistic individuals are not well defined.</p> <p>As in the general population of individuals with DST, autistic individuals with DST do not typically have peripheral hearing abnormalities, such as increased or decreased hearing thresholds (Gravel et al., [<reflink idref="bib26" id="ref43">26</reflink>]; Tharpe et al., [<reflink idref="bib73" id="ref44">73</reflink>]), ruling these out as explanations. However, neurophysiological studies consistently demonstrate atypical neural processing of auditory information in autistic individuals (Green et al., [<reflink idref="bib30" id="ref45">30</reflink>], [<reflink idref="bib29" id="ref46">29</reflink>]; Marco et al., [<reflink idref="bib52" id="ref47">52</reflink>]; Matsuzaki et al., [<reflink idref="bib53" id="ref48">53</reflink>]). For example, Matsuzaki et al. ([<reflink idref="bib53" id="ref49">53</reflink>]) reported abnormal magnetoencephalography (MEG) responses to auditory stimuli in autistic individuals with DST, with larger M50 dipole moments, and prolonged response durations, relative to non-autistic individuals and autistic individuals without DST. Furthermore, the duration of these responses was correlated with scores on the auditory items on the Sensory Profile and with Child Behaviour Checklist scores, suggesting that these neural processing differences may be related to both auditory processing abilities and emotional and behavioural problems, respectively. Given that M50 peak responses originate in or near the auditory cortex and reflect the processing of auditory input, the larger and longer responses observed in this study may be indicative of decreased inhibitory processing as a result of an abnormal sensory gating system (Matsuzaki et al., [<reflink idref="bib53" id="ref50">53</reflink>]). Using fMRI, youth with sensory over-responsivity (SOR) have also been shown to have higher than typical activity in limbic areas, primary sensory cortices, and the orbitofrontal cortex in response to mildly aversive visual and auditory stimuli (Green et al., [<reflink idref="bib30" id="ref51">30</reflink>]), and decreased neural habituation to mildly aversive tactile and auditory stimuli in sensory cortices and the amygdala (Green et al., [<reflink idref="bib29" id="ref52">29</reflink>]), relative to non-autistic youth, and autistic youth without SOR. In both studies (Green et al., [<reflink idref="bib30" id="ref53">30</reflink>], [<reflink idref="bib29" id="ref54">29</reflink>]), activity in these overactive regions was correlated with parents' reports of SOR. Importantly, the over-activity was most evident when stimuli from more than one modality were presented simultaneously, suggesting that this over-activity is related to abnormal sensory gating and/or difficulties with multisensory integration (Green et al., [<reflink idref="bib30" id="ref55">30</reflink>], [<reflink idref="bib29" id="ref56">29</reflink>]). It has also been suggested that in addition to sensory gating abnormalities, difficulties with sensory modulation may lead to difficulties with filtering environmental stimuli as the central nervous system is unable to adequately process the intensity, frequency, duration, and complexity of environmental stimuli (Miller et al., [<reflink idref="bib55" id="ref57">55</reflink>]). As a result of these differences in the neurophysiological processing of auditory information, sounds that are innocuous to many, are instead perceived by autistic children with auditory sensitivities as too loud, at times painful, and potentially frightening, resulting in intense behavioural reactions (Matsuzaki et al., [<reflink idref="bib53" id="ref58">53</reflink>]), as well as anxiety and stress (Brout et al., [<reflink idref="bib12" id="ref59">12</reflink>]; Gillott & Standen, [<reflink idref="bib21" id="ref60">21</reflink>]; Green & Ben-Sasson, [<reflink idref="bib27" id="ref61">27</reflink>]; Green et al., [<reflink idref="bib28" id="ref62">28</reflink>]; Lau et al., [<reflink idref="bib49" id="ref63">49</reflink>]). Although evidence of neurophysiological differences in the processing of auditory information and their relationship to DST have been reported, there is a paucity of research connecting these processing differences to the various types of DST. The precise mechanisms underlying the subtypes of DST are at present unclear, though current models suggest that hyperacusis is related to enhanced central gain, whereas misophonia and phonophobia are related to excess salience and threat being attributed to particular sounds, respectively (Williams et al., [<reflink idref="bib77" id="ref64">77</reflink>]).</p> <p>When investigating behavioural reactions to loud sounds, Wilson et al. ([<reflink idref="bib78" id="ref65">78</reflink>]) found that the majority (59%) of autistic children reported being startled by loud sounds, relative to only 15% of the non-autistic children. When the children were asked about their reactions to loud sounds such as vacuum cleaners and flushing toilets, many of the autistic children reported covering their ears (50%) or crying (31%), while these responses were rare for the non-autistic children (8% and 0%, respectively; Wilson et al., [<reflink idref="bib78" id="ref66">78</reflink>]). Given these behavioural reactions, it is clear that loud sounds create a high level of distress for individuals with DST (Jastreboff & Jastreboff, [<reflink idref="bib38" id="ref67">38</reflink>]; Rimland & Edelson, [<reflink idref="bib65" id="ref68">65</reflink>]), however, loudness is just one aspect of sounds that can create distress for individuals with DST. Previous studies have identified a link between loud noises and distressing behavioural reactions in autistic children with DST, however, a systematic investigation of the different sound properties that create distress, and the types of reactions they elicit, has yet to be conducted.</p> <p>In addition to the acute distress created by sounds, DST has also been linked to chronic stress that can result in negative mental and physical health conditions (McEwen & Gianaros, [<reflink idref="bib54" id="ref69">54</reflink>]; World Health Organization, [<reflink idref="bib80" id="ref70">80</reflink>]). Moreover, the stress created by environmental sounds leads to avoidance behaviours, reduced social and community engagement, and distraction that ultimately impacts performance at home and in school (Ashburner et al., [<reflink idref="bib5" id="ref71">5</reflink>]; Law et al., [<reflink idref="bib50" id="ref72">50</reflink>]; Pfeiffer et al., [<reflink idref="bib62" id="ref73">62</reflink>]; World Health Organization, [<reflink idref="bib79" id="ref74">79</reflink>], [<reflink idref="bib80" id="ref75">80</reflink>]). For example, parents and families of children with sensory sensitivities often report avoiding social gatherings and other activities as they are unable to anticipate the sensory stimulation that may occur, which makes it difficult for them to prepare, and to manage, the sensory experience of their child (Bagby et al., [<reflink idref="bib6" id="ref76">6</reflink>]; Demchick et al., [<reflink idref="bib8" id="ref77">8</reflink>]; Myne & Kennedy, [<reflink idref="bib57" id="ref78">57</reflink>]; Pfeiffer et al., [<reflink idref="bib61" id="ref79">61</reflink>]). Auditory filtering abilities have also been reported to be negatively associated with academic performance and attention to cognitive tasks (Ashburner et al., [<reflink idref="bib5" id="ref80">5</reflink>]). Despite the negative consequences of DST, few coping strategies exist to help individuals with DST and their families and caregivers to manage the distress created by auditory stimuli.</p> <p>To date, only a few strategies have been employed to help autistic children with DST to cope with the distress created by auditory stimuli. One such strategy, auditory integration training, aims to retrain the brains of individuals with DST by exposing them to filtered and modulated auditory frequencies (Sinha et al., [<reflink idref="bib71" id="ref81">71</reflink>]). However, scientific research supporting the effectiveness of auditory integration training is currently lacking (Dawson & Watling, [<reflink idref="bib18" id="ref82">18</reflink>]; Mudford et al., [<reflink idref="bib56" id="ref83">56</reflink>]; Sokhadze et al., [<reflink idref="bib69" id="ref84">69</reflink>]). Another strategy is systematic desensitization in which individuals with DST are gradually, but persistently, exposed to the sounds they find distressing (Jackson & King, [<reflink idref="bib34" id="ref85">34</reflink>]; Koegel et al., [<reflink idref="bib45" id="ref86">45</reflink>]). Although this method has been shown to eliminate sound aversions (Jackson & King, [<reflink idref="bib34" id="ref87">34</reflink>]; Koegel et al., [<reflink idref="bib45" id="ref88">45</reflink>]), given that it addresses the individual's fear of a particular sound, this method may only be effective for treating phonophobia, not all types of DST. In addition, the effectiveness of systematic desensitization is contingent on the awareness of the distressing sound(s), which can be difficult for individuals with DST, who are often unable to predict the environmental stimuli that will cause them distress (Jüris et al., [<reflink idref="bib42" id="ref89">42</reflink>]). There is limited evidence to suggest that tinnitus retraining therapy (TRT), which involves both directive counseling and systematic and continuous binaural exposure to non-distressing broadband sound can improve hyperacusis in the general population, for some but not all patients (Gold et al., [<reflink idref="bib22" id="ref90">22</reflink>]; Hazell et al., [<reflink idref="bib31" id="ref91">31</reflink>]; Noreña & Chery-Croze, [<reflink idref="bib58" id="ref92">58</reflink>]; see Baguley, [<reflink idref="bib7" id="ref93">7</reflink>] and Pienkowski et al., [<reflink idref="bib64" id="ref94">64</reflink>], for reviews). In addition to therapeutic techniques, devices like noise canceling headphones have also been utilized. Noise canceling headphones are a non-invasive technique in which sounds reaching the ear are suppressed using active noise cancelation (ANC). Pfeiffer et al. ([<reflink idref="bib62" id="ref95">62</reflink>]) aimed to assess the effectiveness of noise canceling headphones by having autistic children with DST wear either in-ear or over-ear headphones while exposed to environmental noises in their natural environment, and compared their physiological responses while wearing headphones to periods with no headphones. Pfeiffer and colleagues found a positive relationship between noise levels and stress and anxiety levels, as measured by skin conductance, and that the use of both in-ear and over-ear noise attenuating headphones reduced skin conductance levels (SCL) and the frequency of non-specific conductance responses (NS-SCRs).</p> <p>Aside from these few studies, there is a paucity of work examining strategies to reduce the distress related to DST in autistic children. For this reason, the aims of this study were to gain a better understanding of four important factors related to DST in autistic children and young adults: (<reflink idref="bib1" id="ref96">1</reflink>) the specific auditory stimuli that are problematic, (<reflink idref="bib2" id="ref97">2</reflink>) the reactions, both physical and emotional, produced in response to distressing sounds, (<reflink idref="bib3" id="ref98">3</reflink>) the coping strategies employed by children and young adults and their families, and (<reflink idref="bib4" id="ref99">4</reflink>) the impact of distressing sounds on participation in daily activities. By gaining a better understanding of how DST interferes with autistic children and young adult's lives, and the strategies that parents view as effective, and ineffective, for coping with DST, this study may inform the development of interventions to improve the quality of life of autistic children and young adults and their families.</p> <hd id="AN0158335383-2">Methods</hd> <p></p> <hd id="AN0158335383-3">Participants</hd> <p>Parents of autistic children and young adults (n = 88) with a history of DST were recruited to complete online surveys regarding their child's DST, coping behaviours, and quality of life (see Table 1 for participant demographics). The autistic individuals (n = 88, 68 male) were between the ages of 3 and 30 years (M = 12.03, SD 5.81), and were diagnosed with ASD between the ages of 1 and 22 years (M = 5.56, SD 3.63). The majority of parents reported that their child identified as Caucasian/white (63.6%), of Asian descent (13.6%), or as 'mixed' or 'other' ethnicity (22.7%). The majority of children were reported to have hearing within the normal range (67.1%), while others were reported to have increased hearing abilities (28.4%), and a small percentage of parents indicated they were unsure of their child's hearing abilities (4.6%). Parents of six of the children reported that their child had epilepsy or a seizure disorder (6.8%), while three children (3.4%) were specifically reported to have had a seizure provoked by sounds or noises. All parents provided informed consent and were entered into a draw for a $100 Amazon gift card as compensation and thanks for their time. All procedures were approved by the Simon Fraser University Research Ethics Board, and were in accordance with the World Medical Association 2013 Declaration of Helsinki.</p> <p>Table 1 Demographic information for the children included in this sample</p> <p> <ephtml> <table frame="hsides" rules="groups"><thead><tr><th align="left" /><th align="left"><p><italic>n</italic></p></th><th align="left"><p>Mean</p></th><th align="left"><p>SD</p></th><th align="left"><p>Range</p></th></tr></thead><tbody><tr><td align="left"><p>Age</p></td><td align="left"><p>88</p></td><td char="." align="char"><p>12.03</p></td><td char="." align="char"><p>5.81</p></td><td char="–" align="char"><p>3–30</p></td></tr><tr><td align="left"><p>Age of ASD diagnosis</p></td><td align="left"><p>88</p></td><td char="." align="char"><p>5.56</p></td><td char="." align="char"><p>3.63</p></td><td char="–" align="char"><p>1.5–22</p></td></tr><tr><td align="left"><p>Age of negative reaction to sound onset</p></td><td align="left"><p>88</p></td><td char="." align="char"><p>2.41</p></td><td char="." align="char"><p>2.00</p></td><td char="–" align="char"><p>0–10</p></td></tr><tr><td align="left"><p>Gender</p></td><td align="left" /><td char="." align="char" /><td char="." align="char" /><td char="." align="char" /></tr><tr><td align="left"><p> Male</p></td><td align="left"><p>68</p></td><td char="." align="char" /><td char="." align="char" /><td char="." align="char" /></tr><tr><td align="left"><p> Female</p></td><td align="left"><p>20</p></td><td char="." align="char" /><td char="." align="char" /><td char="." align="char" /></tr><tr><td align="left"><p>Ethnicity</p></td><td align="left" /><td char="." align="char" /><td char="." align="char" /><td char="." align="char" /></tr><tr><td align="left"><p> Caucasian</p></td><td align="left"><p>56</p></td><td char="." align="char" /><td char="." align="char" /><td char="." align="char" /></tr><tr><td align="left"><p> Asian</p></td><td align="left"><p>12</p></td><td char="." align="char" /><td char="." align="char" /><td char="." align="char" /></tr><tr><td align="left"><p> Mixed/other</p></td><td align="left"><p>20</p></td><td char="." align="char" /><td char="." align="char" /><td char="." align="char" /></tr></tbody></table> </ephtml> </p> <p> <emph>ASD</emph> autism spectrum disorder</p> <hd id="AN0158335383-4">Procedure</hd> <p>Participants were recruited through online advertisements over a 16 month period. Parents with an autistic child with a history of DST, defined in our advertisement as children who are "over-reactive to sound in general, or certain types of sound", who were interested in participating contacted the Social Attention Group in Education at Simon Fraser University and were sent a link to the online survey programmed in WebSurvey. After completing an online consent form, parents were asked to provide demographic information and complete an adapted version of the Auditory Sensitivity and Child Safety Questionnaire (Law et al., [<reflink idref="bib50" id="ref100">50</reflink>]). This questionnaire was adapted by removing questions related to hypo-sensitivities, and by adding questions related to: (<reflink idref="bib1" id="ref101">1</reflink>) solutions parents wish existed for helping their child to cope with DST, (<reflink idref="bib2" id="ref102">2</reflink>) whether their child gets overstimulated when there are multiple sources of sensory input (e.g. lights and sounds in a movie theatre), and (<reflink idref="bib3" id="ref103">3</reflink>) whether their child has had difficulty focusing on speakers in places where there is background noise. The adapted version of this questionnaire included 50 questions that explored when the child's DST began, the frequency of the child's negative reactions to sounds, the specific types of sounds that elicit negative reactions, what these negative reactions look like (both behaviorally and emotionally), steps that have been taken to help the child cope and/or manage their DST, and how the DST has influenced the child, as well as the family's participation in daily activities. Participants were then debriefed and compensated for their time.</p> <hd id="AN0158335383-5">Results</hd> <p></p> <hd id="AN0158335383-6">Rates of Sound Sensitivity</hd> <p>Parent reports indicated that the children in this sample began reacting negatively to sound when they were between < 1 year and 10 years old (M = 2.41, SD 2.00). A large majority (87.5%) of parents reported that sound sensitivity is a current issue. More specifically, parents indicated that over the past 6 months from the date of the survey, their child had reacted negatively to a sound that others would find tolerable. When asked about the period when their child's sound sensitivity was at its worst, parents most frequently indicated that their child would react negatively multiple times a day (33.0%). In contrast, over the past 6 months, negative reactions to sound "a few times a month" was most frequently endorsed (22.7%), while negative reactions to sound "everyday" was also frequently endorsed (21.6%; see Fig. 1). In addition to reacting to hearing aversive sounds, parents also reported that their child always (11.0%), frequently (15.0%), or sometimes (43.0%), reacted to the <emph>anticipation</emph> of hearing certain sounds and noises (e.g., their child reacts negatively to the sound of a vacuum cleaner, but also reacted negatively just seeing a vacuum cleaner even if it was not turned on; see Fig. 2). Despite parents reporting that their child experienced frequent negative reactions to sounds, only 41.0% of parents reported that their child had been evaluated by a professional because of his/her negative reactions to sounds.</p> <p>Graph: Fig. 1 Frequency of negative reactions to noise over the past 6 months (grey) and during the time period when the child's sensitivity was at its worst (black) expressed in percent endorsed by parents</p> <p>Graph: Fig. 2 Frequency of negative reactions to the anticipation of sounds and noises expressed in percent of respondents</p> <hd id="AN0158335383-7">Characteristics of Sound Sensitivity</hd> <p>When asked to identify the number of specific sounds that trigger their child to react negatively, "4–6 sounds" was most frequently endorsed (33.0%; see Fig. 3). A majority of the parents (69.3%) also indicated that their child had been overstimulated when there were multiple sources of sensory input occurring simultaneously (e.g. lights and sounds in movie theatres and malls). When asked to describe the sounds and noises to which their child reacts negatively from a list of common sound properties, loud (84.1%), sudden (62.5%), and high pitched (54.5%) sounds were selected by the majority of parents (see Fig. 4 and Supplementary Materials A for full list).</p> <p>Graph: Fig. 3 The number of specific sounds eliciting negative reactions expressed in percent of respondents</p> <p>Graph: Fig. 4 Types of sounds parents reported by caregivers to which their child reacts negatively</p> <p>When asked whether particular sounds had produced negative reactions in their child, crowds (52.5%), construction (e.g. hammering, drilling, 52.3%), and yelling (50.0%) noises were endorsed by the majority of parents (see Fig. 5). Although many of the parents indicated that the sounds listed had produced negative reactions in their child, 39.8% of parents also indicated that their child had reacted negatively to other sounds. For example, 21.6% of parents mentioned machine noises (e.g. blender, hair dryer, leaf blower, etc.), 21.6% mentioned voices (e.g. people speaking, singing, laughing, nagging, etc.). Music or musical instruments and alarms (e.g. school bell, fire alarm, police sirens, etc.) were each endorsed by 12.5% of parents, while water noises (e.g. water running, toilet flushing, etc.) were mentioned by 10.2% of parents (see Supplementary Materials B for full list). Most of the specific sounds described as being distressing can be described using the sound properties that were described as being the most distressing, such as loud (high intensity), sudden, and high pitched (higher frequency). However, a unique category that emerged for a minority of parents was that of human-produced sounds, with 3.4% of parents indicating that their child had found noises such as sniffing, whistling, humming, and eating, very distressing. This finding is interesting given that distress created by human produced sounds is characteristic of misophonia (Cavanna, [<reflink idref="bib14" id="ref104">14</reflink>]; Edelstein et al., [<reflink idref="bib19" id="ref105">19</reflink>]; Jastreboff & Jastreboff, [<reflink idref="bib38" id="ref106">38</reflink>]).</p> <p>Graph: Fig. 5 Specific sounds eliciting negative reactions, as endorsed by caregivers</p> <p>Parents were also asked whether their child has had trouble focusing on speech in places with background noise (e.g. the classroom, while taking transit, etc.). A majority (73.9%) of parents indicated that this was the case. This may suggest that negative reactions to sound are sufficiently distracting to capture attention away from important speech signals, or that autistic individuals have a difficult time segmenting speech from background noise (Alcántara et al., [<reflink idref="bib2" id="ref107">2</reflink>]; Alcantara et al., [<reflink idref="bib1" id="ref108">1</reflink>]; Schelinski & von Kriegstein, [<reflink idref="bib68" id="ref109">68</reflink>]) in addition to their sound sensitivities. The existing data cannot distinguish between these possibilities.</p> <hd id="AN0158335383-8">Child's Emotional State</hd> <p>When asked about their child's emotional state when they have had a negative reaction to sounds and noises, parents most frequently indicated that their child was stressed (81.8%), followed by irritable (63.6%), scared (52.3%), and nervous (47.7%; see Fig. 6 and Supplementary Materials B). We also asked parents if their child had ever shared information about their difficulties with sound. Some poignant responses included:He says that dogs barking, buzzers, and crowded areas that are loud make his ears hurt and are scary for him. He says they are scary because they surprise him.</p> <p>Graph: Fig. 6 Percent of parents endorsing emotional states as occurring during their child's negative reactions to sounds</p> <p>Another said,Sounds make her feel like she is locked in a cage with sound waves bombarding her. Another said,He says that he can't think and he feels detached from his body. He also says that his body takes over and he can't stop his reactions. Another said,Sounds are so painful that it feels like he is being attacked or hurt. He gets very angry.</p> <hd id="AN0158335383-9">Physical Responses</hd> <p>When parents were asked to describe their child's behavioral reactions when they have had negative reactions to sound, the majority of parents indicated that their child covered their ears (87.5%) or yelled or screamed (51.1%; see Fig. 7). In addition to the options listed, 19.3% of parents indicated their child has had 'other' physical responses. However, it is important to note that many of the responses described in this "other" section were similar to the prescribed options. For example, 5.7% of the parents indicated their child would 'leave', rather than 'run away' from the situation, while 3.4% of parents indicated that their child would 'ask for it to stop', rather than 'tries to stop' the sound (see Supplementary Materials C for detailed responses).</p> <p>Graph: Fig. 7 Percentage of parents endorsing physical responses as occurring during their child's negative reactions to sounds</p> <p>Some descriptions of physical reactions that did not seem to fit into the prescribed options, are noted below:He will make rhythmic banging on a wall or countertop to help calm himself down. He will do this repeatedly until the noise stops. Another said,He paces and closes his eyes. Both of these responses could indicate self-stimulatory or repetitive behaviour as a response to sound (e.g., Landon et al., [<reflink idref="bib46" id="ref110">46</reflink>]).</p> <p>Another said,He seeks me out for hugs and to cover his ears and hides his face against me to seek comfort.</p> <hd id="AN0158335383-10">Behavioural Coping Strategies</hd> <p>Individualized education plans (IEPs) are often created to help children develop strategies to be successful in educational settings. A majority (56.0%) of parents indicated that their child's negative reactions to sounds had been addressed in an IEP. In addition, 46.6% of parents indicated that specific treatments or strategies were recommended by either a professional or their IEP team. When asked to describe these strategies, special accommodations such as being able to leave the room if it is loud or being provided with a private room (22.7%), or having the child wear headphones (26.1%) were most commonly mentioned. Warning the child of upcoming noises (5.7%), providing sensory tool kits (4.6%), exposure therapy (3.4%), and auditory processing and hyperacusis/misophonia treatment by an audiologist (1.1%) were also mentioned, albeit less frequently (see Supplementary Materials D for detailed responses). Of those families who had tried treatments or strategies recommended by either a professional or IEP team, most (19%) reported being "somewhat satisfied" with the treatments/strategies attempted (see Fig. 8), with almost as many parents indicating "in the middle", and fewer parents (14%) reporting "very satisfied".</p> <p>Graph: Fig. 8 Parent satisfaction with the treatments and strategies that were recommended their child's individualized education program (IEP)</p> <p>The survey then asked parents to rate their experiences with common interventions and coping strategies for dealing with distressing sounds, such as ear plugs (generally made of plastic or foam material and fitted into the ear canal), ear muffs (designed to cover the entire ear and often worn by those who work in loud areas), earbuds or basic headphones (with music playing), earbuds or basic headphones (without music playing), noise cancelling headphones (with music playing), noise cancelling headphones (without music playing), avoiding noisy settings, warning or preparing child for noises that were about to happen, taking a break (finding a place where the child can go to get away from the noise), hearing aids, and white noise devices. When asked which of these strategies had been tried with their child, warning their child (94.3%), avoiding noisy settings (81.8%), and taking a break (83.0%) were the most commonly endorsed coping strategies. When considering parents' satisfaction with these strategies, of the strategies parents had tried, parents expressed the most satisfaction with noise cancelling headphones with music playing (48.1% very satisfied), followed by noise cancelling headphones without music (36.4% very satisfied), and taking a break (35.6% very satisfied; see Table 2).</p> <p>Table 2 Parent's use of, and satisfaction with, common coping strategies used for dealing with distressing sounds and noises</p> <p> <ephtml> <table frame="hsides" rules="groups"><thead><tr><th align="left" rowspan="2"><p>Strategy</p></th><th align="left" /><th align="left" colspan="5"><p>Parent satisfaction rating (%)</p></th></tr><tr><th align="left"><p>Used by (%)</p></th><th align="left"><p>Very satisfied (%)</p></th><th align="left"><p>Somewhat satisfied (%)</p></th><th align="left"><p>Neutral (%)</p></th><th align="left"><p>Somewhat unsatisfied (%)</p></th><th align="left"><p>Very unsatisfied (%)</p></th></tr></thead><tbody><tr><td align="left"><p>Warning</p></td><td char="." align="char"><p>94.3</p></td><td char="." align="char"><p>26.5</p></td><td char="." align="char"><p>32.5</p></td><td char="." align="char"><p>26.5</p></td><td char="." align="char"><p>8.4</p></td><td char="." align="char"><p>6.0</p></td></tr><tr><td align="left"><p>Taking a break</p></td><td char="." align="char"><p>83.0</p></td><td char="." align="char"><p>35.6</p></td><td char="." align="char"><p>37.0</p></td><td char="." align="char"><p>23.3</p></td><td char="." align="char"><p>4.1</p></td><td char="." align="char"><p>0.0</p></td></tr><tr><td align="left"><p>Avoid noisy setting</p></td><td char="." align="char"><p>81.8</p></td><td char="." align="char"><p>22.2</p></td><td char="." align="char"><p>38.9</p></td><td char="." align="char"><p>22.2</p></td><td char="." align="char"><p>12.5</p></td><td char="." align="char"><p>4.2</p></td></tr><tr><td align="left"><p>Headphones (with music)</p></td><td char="." align="char"><p>59.1</p></td><td char="." align="char"><p>11.5</p></td><td char="." align="char"><p>38.5</p></td><td char="." align="char"><p>21.2</p></td><td char="." align="char"><p>11.5</p></td><td char="." align="char"><p>17.3</p></td></tr><tr><td align="left"><p>Ear muffs</p></td><td char="." align="char"><p>54.5</p></td><td char="." align="char"><p>18.8</p></td><td char="." align="char"><p>35.4</p></td><td char="." align="char"><p>29.2</p></td><td char="." align="char"><p>12.5</p></td><td char="." align="char"><p>4.2</p></td></tr><tr><td align="left"><p>Headphones (without music)</p></td><td char="." align="char"><p>43.2</p></td><td char="." align="char"><p>18.4</p></td><td char="." align="char"><p>10.5</p></td><td char="." align="char"><p>18.4</p></td><td char="." align="char"><p>18.4</p></td><td char="." align="char"><p>34.2</p></td></tr><tr><td align="left"><p>Ear plugs</p></td><td char="." align="char"><p>42.0</p></td><td char="." align="char"><p>2.7</p></td><td char="." align="char"><p>16.2</p></td><td char="." align="char"><p>32.4</p></td><td char="." align="char"><p>18.9</p></td><td char="." align="char"><p>29.7</p></td></tr><tr><td align="left"><p>Noise cancelling headphones (without music playing)</p></td><td char="." align="char"><p>37.5</p></td><td char="." align="char"><p>36.4</p></td><td char="." align="char"><p>21.2</p></td><td char="." align="char"><p>18.2</p></td><td char="." align="char"><p>15.2</p></td><td char="." align="char"><p>9.1</p></td></tr><tr><td align="left"><p>White noise devices</p></td><td char="." align="char"><p>35.2</p></td><td char="." align="char"><p>29.0</p></td><td char="." align="char"><p>16.1</p></td><td char="." align="char"><p>29.0</p></td><td char="." align="char"><p>6.5</p></td><td char="." align="char"><p>19.4</p></td></tr><tr><td align="left"><p>Noise cancelling headphones (with music playing)</p></td><td char="." align="char"><p>30.7</p></td><td char="." align="char"><p>48.1</p></td><td char="." align="char"><p>18.5</p></td><td char="." align="char"><p>18.5</p></td><td char="." align="char"><p>11.1</p></td><td char="." align="char"><p>3.7</p></td></tr><tr><td align="left"><p>Hearing aids</p></td><td char="." align="char"><p>1.1</p></td><td char="." align="char"><p>0.0</p></td><td char="." align="char"><p>0.0</p></td><td char="." align="char"><p>100.0</p></td><td char="." align="char"><p>0.0</p></td><td char="." align="char"><p>0.0</p></td></tr></tbody></table> </ephtml> </p> <p>These are ranked based on % used by</p> <p>When parents were asked to report other strategies or interventions that they found particularly helpful for reducing their child's negative reactions to sounds and noises that did not fall under the prescribed categories, 10.2% of parents reported they had tried repeated exposure or desensitization, 4.6% reported reducing the sound source (e.g. turning down TV, talking quietly), 3.4% reported explaining the source of the noise (e.g., allowing the child to interact with the sound source when it was not making noise), 3.4% mentioned stress reduction (e.g. deep breathing, yoga), 2.3% mentioned self-regulation techniques, 1.1% mentioned integrated listening therapy, 1.1% mentioned providing comfort and support, and 1.1% mentioned applied behaviour analysis (ABA). See Supplementary Materials E for detailed responses.</p> <p>Parents were also asked to describe solutions that they wished existed to help their child cope with noise. From these responses, five solutions were frequently mentioned. One solution was the wish for <emph>quieter spaces</emph> (mentioned by 15% of parents) that included washrooms, arcade parks, classrooms, theaters, public areas (malls, restaurants, and events), and workspaces. Another solution (mentioned by 17% of parents) was an <emph>increase in support</emph> from specialists and community members. This category asked for further understanding of the situation from teachers and more accessible therapy and coaching. Furthermore, this category also asked for more public awareness of sound sensitivity. The third solution was a request for <emph>more comfortable aesthetically pleasing headphones/devices</emph> (mentioned by 6% of parents) than what currently exists on the market, with some parents commenting that their child does not tolerate existing headphones and in-ear devices due to tactile sensitivity. The fourth solution (mentioned by 2% of parents) was for some kind of <emph>device that selectively focuses</emph> on the teacher/EAs voice, so that their child can focus in class, similar to an FM transmitter. Finally, the fifth solution (requested by 5% of parents), was a <emph>selective sound-filtering device</emph> that is able to regulate sound as per their child's need. For example, one parent wished for, "Something that could selectively tune down frequencies that he reacts adversely to" Another said, "a device that helps regulate sound (so that it isn't too high pitch and not too quiet)". See Supplementary Materials F for detailed responses.</p> <p>Some notable responses included:We taught him to do origami to help him focus on that instead of the surrounding noise and then he could hear the speaker. I wish other places like classrooms would accept that kind of fidgeting. Another said,An ABA program so that he can cope with unexpected noises. I don't want to have to remove him or have him miss out on activities (e.g. going out to a restaurant, birthday party, etc.). Another said,More easily accessible treatments that actually addresses the neurological roots of sound sensitivity. Most of the treatment solutions mentioned in this survey only block or muffle the sounds, and generally make my child's sound sensitivity worse as she has restricted herself from potentially noisy situations more and more in order to avoid sounds. Another said,Something that could selectively tune down frequencies that he reacts adversely to. Another said,More attention to sensory issues in intervention and IEP Another said,Coaching on self-advocacy and compensatory strategies rather than self-injury or anger/yelling at others.</p> <hd id="AN0158335383-11">Quality of Life</hd> <p>Negative reactions to sounds have been previously demonstrated to influence one's quality of life (Stiegler & Davis, [<reflink idref="bib70" id="ref111">70</reflink>]; Williams et al., [<reflink idref="bib77" id="ref112">77</reflink>]). Parents were asked to indicate how often their child's negative reactions to sounds had limited his/her participation in family activities, school activities, and community activities (see Fig. 9). Participation was reported to be 'always' or 'frequently' limiting with a combined frequency of 37.5% for school settings 35.2% for community settings, and 33% for family settings. Few parents indicated that negative reactions to sound 'never' limited participation in family (11.4%), school (12.5%), or community (10.2%) settings.</p> <p>Graph: Fig. 9 The frequency with which parents reported that their child's negative reactions to sound limited their participation in a family, b school, and c community settings</p> <p>As an example of how sound sensitivities had limited social opportunities at school, one parent noted:In school settings, the noise at lunch time in the high school cafeteria prevents my daughter from making social connections. She isolates herself in the hall. The educational assistants do not monitor her at lunchtime, so they miss the opportunity to encourage students to spend time with my daughter in another location. Instead, she spends her lunches in solitude. Parents were also asked to report whether their child had ever been in an unsafe situation due to his/her negative reaction to sounds. The majority of parents (55.7%) indicated their child had never been in an unsafe situation, while 26.1% indicated that their child had been in a somewhat unsafe, 9.0% indicated moderately unsafe, and 9.0% indicated very unsafe situations. Parents were also asked to indicate whether their child had ever been physically hurt or injured as a result of his/her negative reaction to sounds and noises. The majority of parents indicated no (84.1%), while 13.6% indicated their child had been mildly injured, and 2.3% indicated that their child had been moderately injured.</p> <p>In order to consider the burden that children's sound sensitivities have create for families, parents were asked how difficult it has been to manage their child's reactions to sounds. The majority of parents indicated either moderate (38.6%), or minimal (44.3%), difficulty managing their child's reactions, while 4.6% reported extreme difficulty and 12.5% reported no difficulty. Parents were asked to report how concerning their child's negative reactions to sounds were compared to other ASD related behaviors. Many parents (38.6%) indicated that their child's negative reactions were concerning, but not one of the most concerning, while 15.9% of parents indicated that their child's negative reactions were either the most, or one of the most concerning ASD related behaviors (see Fig. 10).</p> <p>Graph: Fig. 10 Parent level of concern for their child's negative reaction to sounds, relative to other ASD related behaviours</p> <hd id="AN0158335383-12">Discussion</hd> <p>The aims of this study were to gain a better understanding of (<reflink idref="bib1" id="ref113">1</reflink>) the specific auditory stimuli that are problematic for autistic children with DST, (<reflink idref="bib2" id="ref114">2</reflink>) the reactions, both physical and emotional, autistic children with DST produce in response to distressing sounds, (<reflink idref="bib3" id="ref115">3</reflink>) the coping strategies autistic children with DST and their families employ to manage DST, and (<reflink idref="bib4" id="ref116">4</reflink>) the impact of DST on participation in daily activities. To this end, we had the parents of 88 autistic children provide detailed accounts of their child's experiences with auditory stimuli. Based on these reports, it appears as though, on average, autistic children's DST becomes apparent between 2 and 3 years of age. Although the onset of DST is early in development, it appears to be a chronic condition, as the majority of parents indicated that their child's DST was an ongoing issue. Parents also most frequently indicated that when their child's DST was at its worst, negative reactions occurred multiple times a day, whereas parents most often reported that their child currently (past 6 months) reacted to sounds everyday or a few times a month. Clearly, DST is a common and persistent issue for autistic children and their families.</p> <hd id="AN0158335383-13">Problematic Auditory Stimuli</hd> <p>Although a high prevalence of DST in autistic children is not a new finding, this research focused on the specific types of sounds that are distressing to autistic children with DST. When asked to describe the types of sounds that their child had reacted negatively to, consistent with previous studies (Landon et al., [<reflink idref="bib46" id="ref117">46</reflink>]; Law et al., [<reflink idref="bib50" id="ref118">50</reflink>]; Wilson et al., [<reflink idref="bib78" id="ref119">78</reflink>]), loud, sudden, and high-pitched noises were most commonly endorsed. These are also consistent with autobiographical accounts of "Loud sounds, Sudden sounds. Worse yet, loud and sudden sounds I don't expect. Worst of all, loud and sudden sounds I <emph>do</emph> expect but cannot control (Grandin & Panek, [<reflink idref="bib25" id="ref120">25</reflink>], p. 69)" being distressing to autistic individuals. When asked about the specific sounds that their child had found distressing, from the prescribed options, crowds, construction (e.g. hammering, drilling), and yelling, were reported to have elicited negative reactions by the majority of parents. In addition to these prescribed options, parents mentioned voices and human produced noises such as speaking, singing, laughing, and nagging, as sounds that had been troublesome for their child. Loud sounds are extremely distressing for individuals with hyperacusis (Jastreboff & Jastreboff, [<reflink idref="bib39" id="ref121">39</reflink>]; Williams et al., [<reflink idref="bib77" id="ref122">77</reflink>]), whereas an aversion to human produced sounds is often indicative of misophonia (Williams et al., [<reflink idref="bib77" id="ref123">77</reflink>]). Given that both loud sounds (or, sounds that are perceived as loud), and human-produced sounds were endorsed as being distressing for the children in the present study, it appears as though this sample contained examples of hyperacusis and misophonia. Further, the majority of parents also indicated that their child had been overstimulated when there were multiple sources of sensory input occurring simultaneously, consistent with past research suggesting difficulties with sensory gating and/or multisensory integration (Green et al., [<reflink idref="bib30" id="ref124">30</reflink>], [<reflink idref="bib29" id="ref125">29</reflink>]).</p> <hd id="AN0158335383-14">Behavioural and Emotional Reactions</hd> <p>In addition to providing information about the nature of distressing sounds, parents described their child's behavioural reactions and emotional states when they had been exposed to, or had anticipated hearing distressing auditory stimuli. The majority of parents indicated that their child had covered their ears or yelled when they had been exposed to aversive sounds, with parents also indicating their child had been in pain, reactions that are consistent with previous research findings (Law et al., [<reflink idref="bib50" id="ref126">50</reflink>]). These reactions to sounds are described by individuals with hyperacusis, misophonia, and phonophobia (Law et al., [<reflink idref="bib50" id="ref127">50</reflink>]; Wilson et al., [<reflink idref="bib78" id="ref128">78</reflink>]). When asked about their child's emotional state during exposure to negative sounds, parents most frequently indicated that their child had been stressed, while irritation, fear, and anxiety were also common emotional reactions, consistent with previous research findings (Lau et al., [<reflink idref="bib49" id="ref129">49</reflink>]; Law et al., [<reflink idref="bib50" id="ref130">50</reflink>]). Pain and irritation are commonly associated with responses to aversive sounds in individuals with hyperacusis and misophonia, respectively, while fear and anxiety are commonly associated with phonophobia (Jager et al., [<reflink idref="bib36" id="ref131">36</reflink>]; Williams et al., [<reflink idref="bib77" id="ref132">77</reflink>]), once again suggesting that each of these subtypes of DST were present in our sample of autistic children.</p> <hd id="AN0158335383-15">Coping Strategies</hd> <p>Parents were asked to describe the strategies their child had used to cope with their DST, as well as describe the methods they had employed to help support their child. Over half of the parents indicated their child's DST had been addressed in an individualized education program (IEP) provided by the school. When considering the strategies recommended either by a professional or IEP team, getting the child to leave the room, followed by the use of headphones had been most commonly suggested. Surprisingly, 35% of parents reported that they had not tried the options suggested by either a professional or IEP team, whereas those who had tried the suggestions reported some level of satisfaction. Aside from the strategies recommended by professionals or the IEP team, the most common strategies that had been used by parents to support their child were warning their child, taking a break, and avoiding noisy settings. Even though these were the most commonly used coping strategies, parents reported mixed levels of satisfaction with them. This may relate to the fact that two of the strategies involve avoiding or removing the child from the noisy setting, which is potentially burdensome on families as it limits participation in everyday activities (see next section). In contrast, among the wearable devices, only used by under a third of participants, noise canceling headphones with music received the highest satisfaction ratings. Noise canceling headphones without music playing were also endorsed with high satisfaction, but slightly less satisfaction than noise canceling headphones with music playing. This may be because the ability of noise canceling headphones to mask aversive sounds increases with the addition of music. Complementing these findings, within the wearables category, earbuds/headphones <emph>without</emph> music playing were endorsed with lower satisfaction levels than earbuds/headphones with music. When comparing devices that offer passive noise isolation, such as foam ear plugs and earmuffs (e.g., those used by construction workers), both ear muffs and ear plugs were commonly used (55% and 42%, respectively), with ear plugs rated considerably lower in satisfaction than ear muffs. Since both earplugs and earmuffs offer similar levels of noise attenuation (Canadian Centre for Occupational Health & Safety, [<reflink idref="bib13" id="ref133">13</reflink>]), this difference in user satisfaction may relate to in-ear tactile sensitivity commonly experienced by autistic children, which prevents many from tolerating in-ear devices for even short periods of time (Ikuta et al., [<reflink idref="bib33" id="ref134">33</reflink>]).</p> <p>Parents were also asked what solutions they wished existed for their child. The parents' responses varied and included quieter spaces, increased support and understanding from specialists and the community, more comfortable and aesthetically pleasing wearable devices, devices that selectively focus on or filter out particularly sounds, and devices that can be regulated by the child on demand.</p> <hd id="AN0158335383-16">Impact on Daily Activities</hd> <p>DST has been reported to influence one's quality of life (Stiegler & Davis, [<reflink idref="bib70" id="ref135">70</reflink>]; Williams et al., [<reflink idref="bib77" id="ref136">77</reflink>]). Accordingly, many parents indicated that their child's negative reactions to sound had frequently, or sometimes, limited their participation in school, community, and home settings, consistent with previous reports of the impact of DST on daily functioning (Law et al., [<reflink idref="bib50" id="ref137">50</reflink>]). Given that one of the most commonly used strategies had been leaving or avoiding the noisy setting, it is not surprising to find that DST limited children's participation in everyday activities, as potentially distressing noises are found in almost all environments. Further, a majority of parents indicated that their child had trouble focusing on speech in places with background noise. Thus, noisy environments were not only distressing for these children, but they also presented a barrier to learning and social communication. Further, DST has the potential to create dangerous situations for children. Attempts to escape distressing sounds, using self-injury to cope, and missed instructions or cues of imminent danger due to an inability to adequately process speech in noise, all increase autistic children with DST's risk of danger or injury. Accordingly, just under half of parents indicated that their child had been in a somewhat to very unsafe situation because of their negative reactions to noise. In addition, 15.9% of parents indicated that their child had been physically hurt or injured as a result of their negative reactions to sounds.</p> <hd id="AN0158335383-17">Implications, Limitations and Future Directions</hd> <p>The experiences of autistic children with DST reported here provide strong evidence that DST leads to frequent experiences of distress, which often limit these children's participation at home, school, and in the community. There is a need for treatments and interventions to support children with DST, however, for these interventions and treatments to be effective a better understanding of the nuances of DST, including how to differentiate the different subtypes of DST, is required. An improved understanding of the subtypes of DST would help to ensure that treatments and interventions are beneficial, rather than distressing. For example, exposure therapy has been suggested as a potential treatment option for phonophobia, as gradual and controlled exposure to feared stimuli has been shown to be effective for extinguishing these fears (Johnston et al., [<reflink idref="bib41" id="ref138">41</reflink>]; Koegel et al., [<reflink idref="bib45" id="ref139">45</reflink>]). However, hyperacusis has been suggested to be the result of amplification of low-level sensory information, leading to an increase in subjective loudness (Williams et al., [<reflink idref="bib77" id="ref140">77</reflink>]). Until we are able to reliably distinguish between different forms of DST, it may be that treatments such as exposure therapy have the potential to create additional distress, as attempting to treat a child with hyperacusis using exposure therapy could be painful and traumatic, without providing any therapeutic benefits. Similarly, using noise blocking methods such as headphones, ear plugs, or simply covering one's ears has also been suggested to have downstream negative consequences (Baguley, [<reflink idref="bib7" id="ref141">7</reflink>]). Although blocking the noise can provide temporary relief, it may also have the unintended side-effect of heightening the child's sensitivity to noise, further exacerbating their DST (Formby et al., [<reflink idref="bib20" id="ref142">20</reflink>]; Jastreboff & Jastreboff, [<reflink idref="bib37" id="ref143">37</reflink>]). This suggestion is based on animal models that have shown that decreasing auditory input results in decreases in the response thresholds of large populations of neurons in the ventral cochlear nucleus and inferior colliculus (Boettcher & Salvi, [<reflink idref="bib11" id="ref144">11</reflink>]). Wearable devices such as headphones can also have unintended effects on social development by interfering with effective social communication by virtue of children being unable to hear the speech of others (depending on the amount of passive and/or active attenuation of sound provided by the device), and also by making children stand out, creating a target for criticism by peers. These challenges were evident in parents' expressed desires for devices that can selectively filter different types of sounds, and devices that are more aesthetically pleasing. Thus, the failure of the currently available devices to satisfy these criteria may explain why some wearable devices were rated low in satisfaction by the parents in our sample.</p> <p>The current findings provide insight into the specific auditory stimuli that are problematic for autistic children and young adults with DST, the reactions and coping strategies produced in response to distressing sounds, as well as the impact of DST on participation in daily activities, however, there are limitations to this study. Given the data for this study was collected online, ASD diagnoses could not be formally confirmed. Further, as this study was self-report in nature, there was no objective measure for classifying the features of the aversive sounds reported. Thus, when parents reported features such as "loud" or "high-pitched" we cannot know if they were referring to objectively loud and high-pitched sounds, or to sounds that were perceived as loud and high-pitched. Future studies using more objective measures are required to validate these findings. Additionally, in many instances the parents surveyed in this study were reporting experiences, behaviours, and emotions on behalf of their child. Future studies could corroborate parent reports with reports from the children/adults themselves. Lastly, we have attempted to create links between the reported reactions to sounds and hyperacusis, misophonia, and phonophobia as previously described (Willams et al., [<reflink idref="bib77" id="ref145">77</reflink>]), however, given our modest sample size and lack of direct measurement of these conditions, these relations are speculative. It is difficult to disentangle these different types of DST based on reports of emotional/behavioral reactions to sounds, as a fearful reaction to sound could represent primary phonophobia or could reflect phonophobia developed as a result of (secondary to) hyperacusis (Jastreboff & Jastreboff, [<reflink idref="bib40" id="ref146">40</reflink>]; Kerns et al., [<reflink idref="bib43" id="ref147">43</reflink>]; Williams et al., [<reflink idref="bib77" id="ref148">77</reflink>]). Thus, tentatively we could conclude from our study that hyperacusis, misophonia, and phonophobia were evident in our sample of autistic children and adults, however, a larger sample using more objective measures is required to validate these claims.</p> <hd id="AN0158335383-18">Conclusion</hd> <p>The current findings highlight the high level of distress DST creates for autistic children and young adults with DST. Further, these findings demonstrate that DST is related to fewer opportunities for autistic children and young adults to participate at home, in school, and in the community. In order to improve the quality of life of autistic children and young adults with DST, an improved understanding of the subtypes of DST is required so that improved treatments aimed at alleviating the distress created by sounds and improving social participation can be developed. The current study focused specifically on DST in autistic children and young adults due to the high prevalence of auditory processing differences reported in this population. Given the additional challenges autistic children and young adults experience as a result of being autistic the findings reported here for autistic children and young adults with DST may not extend to non-autistic children and young adults with DST. Understanding how DST differentially affects autistic and non-autistic individuals will be a subject of future research.</p> <hd id="AN0158335383-19">Acknowledgments</hd> <p>This research was supported by a Kid's Brain Health Grant awarded to Elina Birmingham, as well as a BrainsCAN Postdoctoral Fellowship at Western University, funded by the Canada First Research Excellence Fund (CFREF) awarded to Nichole Scheerer.</p> <hd id="AN0158335383-20">Author contributions</hd> <p>EB and GI contributed to the study conception and design. EB contributed to the material preparation and data collection. NES, TQB, and EB contributed to data analysis. The first draft of the manuscript was written by NES and all authors read and approved the final manuscript.</p> <hd id="AN0158335383-21">Funding</hd> <p>Kids Brain Health Network Grant awarded to Elina Birmingham and Nichole Scheerer is the recipient of a BrainsCAN Postdoctoral Fellowship at Western University, funded by the Canada First Research Excellence Fund (CFREF).</p> <hd id="AN0158335383-22">Supplementary Information</hd> <p>Below is the link to the electronic supplementary material.</p> <p>Graph: Supplementary file1 (PDF 36 kb)</p> <p>Graph: Supplementary file2 (PDF 33 kb)</p> <p>Graph: Supplementary file3 (PDF 34 kb)</p> <p>Graph: Supplementary file4 (PDF 44 kb)</p> <p>Graph: Supplementary file5 (PDF 50 kb)</p> <p>Graph: Supplementary file6 (PDF 35 kb)</p> <hd id="AN0158335383-23">Publisher's Note</hd> <p>Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.</p> <ref id="AN0158335383-24"> <title> References </title> <blist> <bibl id="bib1" idref="ref96" type="bt">1</bibl> <bibtext> Alcantara, J. 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  Group: Ti
  Data: Family Experiences of Decreased Sound Tolerance in ASD
– Name: Language
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  Group: Lang
  Data: English
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Scheerer%2C+Nichole+E%2E%22">Scheerer, Nichole E.</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0003-0070-6559">0000-0003-0070-6559</externalLink>)<br /><searchLink fieldCode="AR" term="%22Boucher%2C+Troy+Q%2E%22">Boucher, Troy Q.</searchLink><br /><searchLink fieldCode="AR" term="%22Bahmei%2C+Behnaz%22">Bahmei, Behnaz</searchLink><br /><searchLink fieldCode="AR" term="%22Iarocci%2C+Grace%22">Iarocci, Grace</searchLink><br /><searchLink fieldCode="AR" term="%22Arzanpour%2C+Siamak%22">Arzanpour, Siamak</searchLink><br /><searchLink fieldCode="AR" term="%22Birmingham%2C+Elina%22">Birmingham, Elina</searchLink>
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  Data: <searchLink fieldCode="SO" term="%22Journal+of+Autism+and+Developmental+Disorders%22"><i>Journal of Autism and Developmental Disorders</i></searchLink>. Sep 2022 52(9):4007-4021.
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  Data: Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://link.springer.com/
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  Data: Y
– Name: Pages
  Label: Page Count
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  Data: 15
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2022
– Name: TypeDocument
  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
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  Data: <searchLink fieldCode="DE" term="%22Experience%22">Experience</searchLink><br /><searchLink fieldCode="DE" term="%22Family+Relationship%22">Family Relationship</searchLink><br /><searchLink fieldCode="DE" term="%22Auditory+Perception%22">Auditory Perception</searchLink><br /><searchLink fieldCode="DE" term="%22Auditory+Stimuli%22">Auditory Stimuli</searchLink><br /><searchLink fieldCode="DE" term="%22Autism%22">Autism</searchLink><br /><searchLink fieldCode="DE" term="%22Pervasive+Developmental+Disorders%22">Pervasive Developmental Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Children%22">Children</searchLink><br /><searchLink fieldCode="DE" term="%22Young+Adults%22">Young Adults</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1007/s10803-021-05282-4
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 0162-3257<br />1573-3432
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Decreased sound tolerance (DST) is the most common sensory difficulty experienced by autistic individuals. Parents of 88 autistic children and young adults between the ages of 3 and 30 described coping strategies and physical and emotional responses used to deal with distressing sounds, and their impact on daily activities. Loud, sudden, and high-pitched sounds were most commonly endorsed as distressing, most often causing autistic children and young adults to cover their ears or yell, while producing stress, irritation, fear, and anxiety. Parents reported warning their child, providing breaks, or avoiding noisy settings as the most used coping strategies. Overall, findings indicate that DST leads to fewer opportunities for autistic children and young adults to participate at home, at school, and in the community. Further, results suggest hyperacusis, misophonia, and phonophobia, subtypes of DST, are present in autistic children and young adults.
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  Data: 2022
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  Data: EJ1343884
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        PageCount: 15
        StartPage: 4007
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      – SubjectFull: Experience
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      – TitleFull: Family Experiences of Decreased Sound Tolerance in ASD
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