FAR EASTERN UNIVERSITY

Psychological Stress, Depression, Coping Strategies among Mothers Of Children with Autism Spectrum Disorder And Down Syndrome: A Comparative Study By: Gimeno, ona G! "icente, "enice #ouise "ictorio, Samuel $! Far Eastern University

Chapter %

FAR EASTERN UNIVERSITY &'()OD*C(&O' Raising a child with autism spectrum disorder (ASD) and Down Syndrome (DS) is uni uely challenging to parents! "he children#s restricted social$ communicative and emotional competencies$ their uneven cognitive

development$ and their maladaptive %ehavior place tremendous stress on parents o& children with ASD (Davis ' (arter$ )**+, -astings ' .ohnson$ )**/)! 0n comparison to mothers o& typically developing ("D) children and mothers o& children with other disa%ilities$ mothers o& children with ASD and DS report elevated stress levels (Eisenhower$Ba1er$ ' Blacher$ )**2, Estes$ et al!$ )**3, 4ontes ' -alterman$ )**5, Rao ' Beidel$ )**3) and they are at an increased ris1 &or depression (6lsson ' -wang$ )**/)!6nly recently$ research has &ocused on mothers# e7perience o& having a child with ASD and DS! 0t seems$ however$ very important to understand what it is li1e to %e a parent o& a child with ASD and DS$ given the increased involvement o& parents in the early intervention o& their child (Shields$ )**/)! Accordingly$ several authors recommend to assess mother#s well8%eing %e&ore implementing any parenting intervention and to address symptoms o& stress and depression$ in order to ma7imi9e intervention outcome (:uhn ' (arter$ )**;, Rao ' Beidel$)**3)! 6therwise$ stress and depressive symptoms may inter&ere with mother#s a%ility to engage in interventions &or her child!

FAR EASTERN UNIVERSITY 4ost o& the parents are a&raid or ashamed to discuss the truth to their &amily or relatives since they are not sure whether they could gain positive response &rom them or possi%ly they#ll %lame them! Another &actor is the

society$ the discrimination which is o&ten %ased on ignorance$ pre<udices and negative stereotypes! =arents with normal children usually go to mall together without thin1ing o& %eing em%arrassed and not worrying a%out their child throwing some tantrums! But &rom the perspective o& parents o& children with disa%ility$ they cannot en<oy recreational time together %ecause o& that child#s needs and unusual condition!

.ust li1e any other children$ they need same 1ind o& love$ support$ discipline and direction! -owever$ they need e7tra attention$ e7traordinary patience and e7tra time! "hese children may have limitations %ut tapping their strengths and a%ilities will ena%le them to reach their &ull potential!

$ac+ground of the study >i&e o& parents o& a child with Autism and Down syndrome can %e a daily grind$ and completely draining$ sleepless$ relentless e&&ort to prevent their child &rom sel&8harm$ guess their child#s needs and search &or ways to prevent their child &rom withdrawing! Relationships %etween couples were a&&ected %y their child#s condition! =arents especially the 4other#s o& the child get &i7ated at the %laming stage and can#t %egin to cope with raising the child until they reali9e that

FAR EASTERN UNIVERSITY it doesn#t help the child or resolve the %lame issue (.ohnson$ Ring$ Anderson$ ' 4arlow$ )**2, 4elny1 et al!$ )**;, =inelli$ )***, "eti$ -ess$ ' 6#(onnell$ )**2) 0n /3*+$ Eugen Bleuler coined the word ?autism? in schi9ophrenic patients who screened themselves o&& and were sel&8a%sor%ed! And 0n /3@A$ the American child psychiatrist >eo :anner descri%ed // children with the &ollowing common traits: impairments in social interaction$ anguish &or changes$ good memory$ %elated echolalia$ over sensitivity to certain stimuli (especially sound)$ &ood pro%lems$ limitations in spontaneous activity$ good intellectual potential$ o&ten coming &rom talented &amilies! -e called the children autistic! Earlier in /3@A$ United States o& America estimated that A children out o& /*$*** were diagnosed with Autism! 0n the late /33*#s$ Autism prevalence rates reached ;* out o& every /*$*** %irths with the rates increasing when including all disorders o& the Autism Spectrum (Bing ' =otter$ )**))! "he disorders that &rom the Autism Spectrum include Rett#s Disorder$ (hildhood Disintegrative Disorder$ Asperger#s Disorder$ and =ervasive Developmental Disorders8not otherwise speci&ied! (hildren diagnosed with any ASD have symptoms that vary &rom mild to severe$ and all e7perience some degree o& impairment in their communication s1ills$ social interactions$ and %ehaviors! For e7ample$ some Autistic children are largely non8ver%al$ some have emotional "antrums$ and some engage in repetitive %ehaviors (e!g! hand &lapping) (Cational 0nstitute o& (hild -ealth and -uman Development$ )**+)!

FAR EASTERN UNIVERSITY Autism is a developmental disa%ility signi&icantly a&&ecting ver%al and nonver%al communication and social interaction$ generally evident %e&ore age three$ that adversely a&&ects a child#s educational per&ormance! 6ther

characteristics o&ten associated with autism are engaging in repetitive activities and stereotyped movements$ resistance to environmental change or change in daily routines$ and unusual responses to sensory e7periences! "he term autism does not apply i& the child#s educational per&ormance is adversely a&&ected primarily %ecause the child has an emotional distur%ance (0DEA )**@)! -aving a child with ASD does not only a&&ect parents$ %ut it also poses a threat to the well8%eing o& the whole &amily! E7isting research e7ploring parent#s e7periences with a child with ASD points to impairments o& &amily &unctioning such as Dgiving up normal &amily activities and outings#$ Dlac1 o& spontaneity or &le7i%ility in &amily li&e#$ Dlac1 o& personal social activities#$ Dstress surrounding the marital relationship#$ and Ddi&&iculties to maintain employment or to pursue outside activities# (-utton ' (aron$ )**2, 4ontes ' -alterman$ )**5, 4yers$ 4ac1intosh$ ' Eoin :ochel$ )**3, =helps$ 4c(ammon$ Buensch$ ' Eolden$ )**3)! During /+;; a British physician$ .ohn >angdon Down$ &or whom the syndrome is now named$ &irst descri%ed Down syndrome$ as F4ongolism!G "he term Down syndrome didn#t %ecome the accepted term until the early /35*s! 4ore was learned a%out the condition in /323 when French

=ediatricianHEeneticist =ro&essor .erome >e<eune discovered that individuals

FAR EASTERN UNIVERSITY with Down syndrome have an e7tra chromosomeI<ust one year %e&ore CADS was &ounded! Shortly therea&ter$ chromosome studies were developed to con&irm the diagnosis o& Down syndrome! Down syndrome is the most common and readily identi&ia%le chromosomal condition associated with intellectual disa%ilities! 0t is caused %y a chromosomal a%normality: &or some un1nown reason$ an accident in cell development results in @5 instead o& the usual @; chromosomes! "his e7tra chromosome changes the orderly development o& the %ody and %rain! 0n most cases$ the diagnosis o& Down syndrome is made according to results &rom a chromosome test administered shortly a&ter %irth! .ust as in the normal population$ there is a wide variation in mental a%ilities$ %ehavior$ and developmental progress in individuals with Down syndrome! "heir level o& intellectual disa%ility may range &rom mild to severe$ with the ma<ority &unctioning in the mild to moderate range (0DEA )**@)! Down syndrome (DS) has %een identi&ied as the most common organic cause o& mental retardation (larocci$ Jir<i8Bar%ul$ ' Ree%ye$ )**;)! Although it is di&&icult to de&initively esta%lish the prevalence o& DS$ in a recent meta8analysis (Sherman$ Allen$ Bean$ ' Freeman$ )**5) the prevalence rate was estimated to %e appro7imately / in 5A) %irths in the United States! "he prevalence o& DS across di&&erent ethcities or su%8populations appears to vary &rom this rate! For e7ample$ higher rates o& DS have %een &ound among those with -ispanic origins compared to an A&rican American population ((an&ield et al!$ )**;)!

FAR EASTERN UNIVERSITY -aving a child with down syndrome lead to changes in the li&estyle o& the whole &amily! 0denti&ication and acceptance o& learning disa%ilities are di&&icult processes$ and promoting the childKs optimal development re uire adaptation %y all &amily mem%ers$ whose characteristics$ as well as the degree o& a&&iliation and support among them$ have great in&luence on these li&estyle changes$ %oth in terms o& uality and uantity Risdal and Singer ()**@)! Stressors come along with parenting any child! -owever$ research has shown that when a child has Down syndrome$ parents are o&ten at a higher ris1 &or many negative psychological outcomes (Schieve$ )**5)! 0n dealing with the intellectual$ linguistic$ and %ehavioral issues that may characteri9e their child#s disa%ility$ parents o& children with Down syndrome needs o&ten must pay more medical %ills$ are less a%le to &ocus on the lives o& their other children$ and may have to spend more time at home with the child$ reducing time &or themselves (Stoneman$ )**5$ p! /*/@)! Based on previous research$ i& there is one developmental disa%ility &or parents that can %e called at all FadvantageousG$ that disorder is Down syndrome! =revious research %y L! Stoneman ()**5) claims that compared to Autism there is a FDown syndrome advantageG &or parents! =arents o& children with Down syndrome have %een compared to parents o& children with Autism$ and the parents o& the Down syndrome children have lower levels o& depression$ higher levels o& sel&8reported warm parenting$ and higher levels o& maternal warmth o%served %y others (Stoneman$ )**5$ p! /*/@)! 6ther research shows

FAR EASTERN UNIVERSITY similar results as parents o& children with Down syndrome e7perience less stress and more rewards compared to parents o& children with Autism Spectrum Disorder (-odapp$ >y$ Fidler$ ' Ricci$ )**/)! Feelings o& guilt a%out not doing enough &or one o& your children# was in no way signi&icantly associated with parenting cognitions a%out the other child$ pro%a%ly %ecause the range o& this measure was limited! By contrast$ mothers# %elie&s o& sel&8e&&icacy and agency a%out parenting one o& their children were signi&icantly correlated with the %elie&s a%out her other child! "his &inding is very important$ given the lower sel&8e&&icacy %elie&s we detected in mothers towards their child with ASD and DS$ and thus the possi%le negative impact on mothers# %elie&s towards their "D child! Furthermore$ depressive &eelings a%out the children with ASD and children with DS were also negatively associated with mothers# sel&8e&&icacy %elie&s a%out parenting their "D child$ %ut this association appears to %e mediated %y maternal sel&8e&&icacy %elie&s a%out the children with ASD and DS (-astings et al!$ )**2)!

Statement of the Pro,lem "his study attempts to determine the level o& psychological stress$ depression and coping strategies among mothers o& children with Autism and Down syndrome! "he 4aternal involvement$ preparation and acceptance in handling their child and use the results to give &uture recommendations in order to provide appropriate coping strategies!

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Speci&ic =ro%lems: /! Bhat is the pro&ile o& the motherHs o& children with Autism Spectrum DisorderHDown Syndrome in terms o&: /!/ age$ /!) gender$ /!A civil Status /!@ educational attainments$ /!2 num%er o& children in the &amily$ and /!; occupations )! 0nto what e7tent do mothers o& Autism Spectrum Disorder and Down syndrome di&&er in e7periencing psychological stress in terms o&: )!/ e7ternal Stress )!/!/ (onditions o& the child with ASDHDSM )!/!) Financial Di&&icultiesM )!/!A =ro%lems in the &amilyM )!) internal Stress )!)!/ Feelings %y %eing <udged %y the societyM )!)!) Being worried a%out the &uture o& their childM A! 0s there a di&&erence %etween the level o& depression among the mothers o& children with Autism Spectrum Disorder and those with Down syndromeM

FAR EASTERN UNIVERSITY @! 0n what ways do mothers o& ASD and DS di&&er in terms o& coping strategies in handling their childrenM

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-ypothesis of the study "he &ollowing null hypotheses will %e tested: /! "here is no signi&icant di&&erence %etween children with Autism and Down syndrome )! "here is no signi&icant di&&erence %etween the psychological stress among mothers o& children with Autism and Down syndrome A! "here is no signi&icant di&&erence %etween the depression among mothers o& children with Autism and Down syndrome @! "here is no signi&icant di&&erence %etween the coping strategies that mothers o& children with Autism and Down syndrome use 2! "here is no signi&icant di&&erence on the tas1 and responsi%ilities o& the mothers o& children with Autism and Down syndrome

Significance of the Study "he purpose o& this study was to o%tain an understanding o& the uni ue e7periences o& 4others who have children at ris1 &or or identi&ied with an autism spectrum disorder or Down syndrome and their e7periences with the stages o& coping up$ strategies and early intervention! Results suggested that 4others have di&&erent e7periences related to their participation in services and

FAR EASTERN UNIVERSITY interactions with service providers$ as well as varying &eelings a%out services! 0mplications &or service providers are discussed in relation to recogni9ing the importance o& 4others participation$ matching services to the needs o& the &amily$ and incorporating interpersonal s1ills into early intervention practice with &amilies o& young children with autism spectrum disorder and Down syndrome! "he aim o& the study was to investigate the perceived stress o& %oth mothers o& children diagnosed with ASD and DS$ which is de&icits within the areas o& speech$ socia%ility$ sensoryHcognitive awareness$ and

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healthHphysicalH%ehavior! "he prediction that all &our dimensions o& speech$ socia%ility$ sensoryHcognitive awareness$ and healthHphysicalH%ehavior would signi&icantly predict perceived stress o& %oth mothers was partially supported %y multiple regression analysis! "he study &ound that the dimension o& socia%ility was the only signi&icant predictor o& perceived stress in mothers! "hese &indings are inconsistent with past research that suggests mothers are more a&&ected %y %ehavioral8%ased de&icits! Furthermore$ these results are inconsistent with past &indings that have suggested that each o& the dimensions is signi&icant predictors o& parental stress! "he present research is relevant and timely %ecause through an interview and survey we would %e a%le to 1now the level o& psychological stress$ depression and coping strategies each parents used in handling their child!

FAR EASTERN UNIVERSITY 0n outline$ this study is signi&icant in respect to the &ollowing: /! Parents to cope with the services they need and they will need in order to cope with their needs and &or them to %ecome psychologically healthy in handling their (hilds needs and support! )! Professional in identi&ying their involvement during and a&ter the recommendation process! "his study will show the necessity o& wor1ing hand in hand with mothers to provide necessary measures to sa&eguard the mission! A! .uture researchers this study may %ecome a spring%oard &or adopting signi&icant studies in connection o& 1nowing the stress$ depression and strategies used %y mothers o& children with ASD and DS that may help &uture stretch the %oundaries o& e7cellence in accurate recommendations! uality management and give

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(heoretical .ramewor+ "his study measured the psychological stress$ depression and coping strategies among parents o& children with Autism and Down syndrome! "hree ma<or theories o& parenting stress in &amilies o& children with e7ceptionalities have %een proposed (4c(leary$ )**))! "hree o& these theories &eature a strong &ocus on the mechanism through which parenting stress %ecomes elevated in parents o& children with ASD and DS and other disruptive %ehaviour disorders! "hese three theories all identi&y cognitive &actors in the

FAR EASTERN UNIVERSITY parent as at least one o& the mechanisms through which child &actors in&luence parenting stress! "hese theories &eature transactional e&&ects$ such that parenting stress is the result o& the other &actors suggested$ and also contri%utes to the system over time! "he &irst theory$ the =arent8(hild 0nteractive Stress 4odel$ proposed %y 4ash and .ohnston (/33*) holds that child characteristics are the primary contri%utors to parent8child stress$ %ut that environmental &actors also have direct in&luences on stress! "his theory also suggests that parent8child stress a&&ects child$ parent$ and environmental characteristics! Unli1e the other theories o& parenting stress that will %e discussed$ this theory addresses Fparent8child interactive stressG rather than parenting stress more generally! "he authors descri%e parent8child interactive stress as one aspect o& parenting stress, it is de&ined as the stress which mani&ests itsel& in parent8child con&lict (4ash ' .ohnston$ /33*)! 0n this model$ the e&&ects o& child and environmental stressors are mediated %y parental characteristics$ which nota%ly include parental cognitions$ and more speci&ically$ attri%utions &or child %ehaviour! 6ther parent characteristics that 4ash and .ohnston suggest mediate child and environmental characteristics include a&&ective states$ personality$ %ehavioural repertoires$ and health (ognitions are characteri9ed in this theory %y their a&&ect8generating and motivational properties! As such$ they are presumed to %e a%le to e7acer%ate$ reduce$ or prevent parent8child stress!

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FAR EASTERN UNIVERSITY 0n addition to attri%utions &or child %ehaviour$ perceptions o& the severity o& child %ehaviour and parenting e&&icacy (one#s sense o& one#s a%ility to manage the demands o& parenting) are highlighted as parenting cognitions mediating parent8 child stress! 6ther parent cognitive &actors such as intellectual a%ility$ values$ and %ehavioural intentions are also posited as a&&ecting parent8child stress! "he second theory$ proposed %y Be%ster8Stratton (/33*)$ suggests that e7tra &amilial stressors$ interpersonal stressors$ and child stressors a&&ect parenting! E7tra &amilial stressors in this theory include unemployment and low socioeconomic status$ and interpersonal stressors include marital distress and divorce! (hild stressors re&er most signi&icantly to %ehaviour pro%lems! Cegative parent8child interactions also increase parenting stress$ such that children#s %ehaviour pro%lems are %oth a contri%utor to and a product o& increased parenting stress! "hese negative interactions are posited to e7plain the cycle o& parenting stress and child %ehaviour pro%lems in &amilies o& children with ADS and DS and other conduct pro%lems! Be%ster8Stratton &urther proposes that the impact o& e7tramarital$ interpersonal$ and child stressors on parenting stress are mediated %y a variety o& parental characteristics$ including cognitive &actors$ such as appraisal o& the stressor! 6ther parent &actors that mediate the e&&ect o& stressors on parenting stress include parents# psychological well8%eing$ uality o& social support$ gender$ and drug use! "he third theory o& parenting stress was proposed %y A%idin in /35; (as cited in A%idin$ /332)! A%idin is also the creator o& the leading measure o&

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FAR EASTERN UNIVERSITY parenting stress$ "he =arenting Stress 0nde7 (=S0, /3+AH/332)! Although this theory is the oldest$ it still dominates the literature! Rather than a theory that e7plains the mechanism or FhowG o& parenting stress$ this ecological theory more care&ully elucidates potential mediators and moderators o& parenting stress! A%idin proposes that parenting stress is determined %y parent &actors$ child &actors$ and situational &actors! 0n this theory parent &actors are de&ined as parental attachment$ sense o& competence$ and depression, child &actors as adapta%ility$ accepta%ility$ demandingness$ mood$ hyperactivity$ and %eing rein&orcing to parent, and situational &actors as role restriction (the impact o& parenthood on the parent#s other li&e roles)$ parental health$ social

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supportHisolation$ and spousal relationship (support and relational con&lict)! 6utside li&e stressors are seen as glo%al &actors that can e7acer%ate parenting stress without having any direct e&&ects on parenting stress! 0n this theory$ parenting stress is proposed to negatively a&&ect parenting (%ehaviours)$ which then a&&ects child outcomes! A%idin#s theory has several commonalities with Bels1y#s (/3+@) process model o& parenting! "hese include the delineation o& &actors a&&ecting parenting or parenting stress and the reciprocal interactions %etween these &actors! "here are some di&&erences %etween these two models! "he &irst o& two su%stantive di&&erences are that in Bels1y#s model$ the parent$ child$ and situational &actors are presumed to determine parenting$ while in A%idin#s theory$ they are presumed to determine parenting stress$ which then leads to dys&unctional

FAR EASTERN UNIVERSITY parenting! "he second di&&erence is that Bels1y is clearer a%out the e&&ects o& parenting on child outcomes! A%idin implies that parenting impacts child outcomes in his writings (e!g!$ A%idin$ .en1ins$ ' 4cEaughey$ /33))$ %ut does not ela%orate on this relationship when discussing his theory (A%idin$ /332), he does, however$ re&erence the applica%ility o& Bels1y#s model to his wor1 (A%idin et al!$ /33))! "he di&&erences %etween these models thus amount to the inclusion o& the a&&ective concept through which parent$ child$ and situational &actors a&&ect parenting practices$ and the clarity with which they lin1 parenting to child outcomes! 6ne other minor di&&erence %ears consideration! Bels1y (/3+@) assumes that the same processes are in e&&ect in %oth Fdys&unctionalG and FnormalG &amilies$ while A%idin#s theory is one solely o& dys&unction! "he current research$ in its inclusion o& %oth &amilies o& children with ADS and DS and &amilies o& children without ADS and DS sits %alanced in the middle o& the continuum %etween these two theories! Eiven the dominance o& A%idin#s theory (/332) and its &it within the larger parenting literature$ it was used as the conceptual &ramewor1 &or this dissertation! 0n part$ the decision to use this theory as a guiding &ramewor1 was made %ecause the data availa%le &or inclusion in the meta8analysis were most directly applica%le to this theory! Although the other three theories are well8 esta%lished and discussed e7tensively within the literature (especially the 4ash ' .ohnston theory$ /33*)$ the &act that the A%idin theory maps so clearly on to the =S0$ which is still the dominant measure o& parenting stress$ ma1es it easiest

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FAR EASTERN UNIVERSITY &or researchers to test and evaluate! 0n its &avour$ this theory more comprehensively lists varia%les &or consideration than do other theories! "his theory is also universally adopted %ecause it is well8considered and empirically8 in&ormed (see A%idin$ /33*$ /332)!

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Conceptual Paradigm Bhat is shown %elow is the &igure representing the paradigm o& the study$ the research approach used in this study was =henomenology! "hirty mothers o& children with Down syndrome and Autism spectrum disorder who met the inclusion criteria were selected using purposive sampling techni ue &rom the selected special schools at 4ari1ina,

Fig!/ =aradigm o& the Study

(olai99iKs data analysis &ramewor1 was used to analy9e the transcripts in this study! From the analysis o& the data$ si7 themes emerged &rom the e7periences o& mothers o& children with DownKs syndrome and they were as &ollows, /! 'on Acceptance /,irth Of an A,normal Child! "he &irst theme was Con acceptance N Birth o& an a%normal child! All the participants e7pressed their &eelings o& shoc1 and depression at the moment they

FAR EASTERN UNIVERSITY came to 1now that their child is having either Autism Spectrum Disorder or Down syndrome$ also they were an7ious a%out their child condition! )! #ifestyle Changes! "he second theme was li&estyle changes! A&ter the childKs %irth$ the immediate stressor mothers encountered was &acing a child who was completely di&&erent &rom their e7pectations! All the participantsK e7pectations are changed a&ter the child was diagnosed with Autism or Down syndrome! 4ost o& the mothers e7pressed as they need to spend more time with the child! A! -igh $onding ,etween .amily Mem,ers! "he third theme was high %onding %etween &amily mem%ers! Every mother e7pressed they are maintaining good relationship with &amily mem%ers! 4ost o& the mothers e7pressed as hus%and is most supportive person in caring children with ASD or Down syndrome! @! 0orried A,out the *npredicta,le .uture of the Child! "he &ourth theme was worried a%out the unpredicta%le &uture o& the child! "his re&erred to mothers worry a%out their child in the near and distant &uture! 0mmediate worries were the childKs school placement and health status! 4othersK ma<or worries concerned the childKs sel&8caring a%ility$ the a%ility to ma1e a living and %ecome independent! 4ost o& the participants have worried a%out whether their child will %e a%le to ta1e care o& him or hersel& in later years!

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FAR EASTERN UNIVERSITY 2! Societal and Community Acceptance! "he &i&th theme was societal and community acceptance! 4ost o& the mothers e7pressed they got ade uate support &rom society! All the mothers placed an emphasis on the importance o& social support &rom outside the &amily! ;! Positiveness towards #ife! "he si7th theme was =ositiveness towards li&e! All the participants e7pressed their changes in way o& living a&ter the %irth o& Down syndrome child! "he paradigm o& the study shows a &lowchart o& how the study is to %e underta1en and accomplished &rom the start to &inish! First an interview was conducted in order to as1 personally the respondents a%out their insights on having chills with ASD and DS! Ce7t$ a sel&8survey result &rom the 4others were collated and analy9ed as a spring%oard to assess the e7tent o& involvement o& =sychological stress$ depression and coping strategies among mothers o& children with Autism and Down syndrome! A survey was administered to the respondents who were directly involved in the process o& psychological stress$ depression and coping strategies! From the data collected and &rom the analysis made$ an action plan is &ormulated giving recommendations at the end o& (hapter @ on &uture plans to ensure that 4others can cope to the needs o& their child and is psychologically healthy in handling their child!

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FAR EASTERN UNIVERSITY Scope and #imitations of the Study "he study on the =sychological stress$ depression and coping strategies among mothers o& children with Autism Spectrum Disorder and Down syndrome is &ocused on the stress$ depression and coping strategies among parents$ especially mothers who are &acing struggles in handling their child! "his study is limited to A* mothers o& children with Autism and Down syndrome$ /2 each coming &rom di&&erent private and pu%lic special education schools and private personnel all over 4etro 4anila! "here would %e an issue relation to this study#s use o& posted uestionnaires! Although instructions re uested parents to complete the surveys independently$ there is no guarantee that mothers &rom the &amily did as instructed! 0t is possi%le that the &ailure to &ind signi&icant results and variance in the dimensions was due to respondents answering in accordance with demand characteristics or social desira%ility! Any sel&8report measure is vulnera%le to such issues, however$ administering surveys in controlled conditions could eliminate these pro%lems in the &uture!

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Definition of (erms "he &ollowing de&initions have %een selected to promptly understand the terms used on the di&&erent areas o& the study:

FAR EASTERN UNIVERSITY Autism is a severe disorder$ with an onset %e&ore age A years old$ which is characteri9ed %y a%normalities in social &unctioning$ language and

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communication$ and %y unusual interests and %ehaviors (Diagnostic and Statistical 4anual o& 4ental Disorder$ Fourth Edition8"e7t Revision)! Coping Strategies is the process o& managing e7ternal andHor internal demands that ta7 or e7ceed the resources o& the person! 0t is a comple7 and multidimensional process that is sensitive to %oth environment and the personal o& the individual (Fritscher$ )**3+)! Depression is sadness or downswings in mood are normal reactions to li&e#s struggles$ set%ac1s$ and disappointments! Down syndrome is a congenital disorder in which a person is %orn with three copies o& chromosome )/ (trisomy )/)! Mother re&ers to the in&ormants o& the study! "hey are mothers who have children with special needs! Parental Stress is the aversive psychological reaction to the demands o& %eing a parent and it is e7perienced as negative &eelings towards sel& and toward the child and it is attri%uted to the demands o& parenthood (Bornstein$ )**+)

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Chapter 1 )eview of )elated #iteratures During the past decade$ there has %een e7panding %ody o& research a%out the various things that concerns the psychological stress among mothers with children with Autism Spectrum Disorder (ASD) and Down Syndrome (DS)! "his is however a dearth need &or researchers that will &urther study things that clari&y the psychological stress among mothers! 0n attempt to contri%ute to this issue$ this research was pursued! "he present study tac1les a%out the psychological stress that the parents undergo in their involvement regarding their child#s education speci&ically in Special Education! "his chapter contains opulent in&ormation that would <ust %e enough to cover up the whole research! "he research illustrated psychological stress among mothers with children having ASD and DS who have %een involved and how those various things in&luenced their %elie&s and attitudes! 0t helped &ill the research gap in understanding what is a&orementioned a%ove! Such relevant in&ormation was gathered &rom various re&erences that were care&ully studied %y

FAR EASTERN UNIVERSITY s1illed and most N respected persons who were very 1nowledgea%le on this topic! All in&ormation that were assem%led and gathered is e7pected to contri%ute to the development o& the entire research! Such in&ormation will supply a way &or a clearer view o& 1nowing the psychological stress among mothers!

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A! )elated Studies Parental Stress in Mothers and .athers of Children with Autism Spectrum Disorders 0n the article Parenting Stress in Mothers and Fathers of Children

with Autism Spectrum Disorders it is said there that one o& the most signi&icant causes o& stress e7perienced %y parents o& children with autism is lac1 o& ade uate pro&essional support (Bishop et al! )**5, Sharpley et al!$ )**+)! =arents &ace pro%lems receiving help &rom healthcare pro&essionals already at the stage o& diagnosis o& their child#s developmental de&icits! Su&&ice to say that$ on average$ the child is assessed %y more than &our pro&essionals %e&ore diagnosis$ with mean time to diagnosis %eing appro7imately )8A years (Si1los ' :erns$ )**5)! Among the multiple &actors contri%uting to this situation$ a ma<or cause is the general lac1 o& education a%out the course o& young children#s development and its disorders among pro&essionals (including physicians and psychologists)$ and insu&&icient 1nowledge o& symptoms indicating signi&icant developmental di&&iculties! Another important issue is the small num%er o&

FAR EASTERN UNIVERSITY diagnostic and treatment institutions o&&ering speciali9ed services to individuals with ASD! As noted %y Corton and Drew (/33@)$ A signi&icant cause o& parents# dissatis&action with pro&essionals is pro%lems in o%taining speci&ic in&ormation a%out autism and instructions on how to ta1e care o& the child! A study %y Rhoades and colleagues ()**5) showed that as &ew as @*O o& physicians who give the child the diagnosis o& autism &ollow up with additional in&ormation a%out the disorder &or parents$ and only appro7imately /28A@O give advice on choosing a medicalHeducational program! "he results o& research %y -all and Era&& ()*//) suggest that parents e7pect pro&essionals to have up8to8date 1nowledge on availa%le sources o& support and to %e a%le to direct the &amily so as to save it &rom %eing overloaded with unnecessary and unneeded activities! -owever$ the results o& studies on pro&essionals show that they are uncertain a%out the aetiology o& autism$ diagnosis and the %est types o& intervention &or a&&ected children (e!g! 4avropoulou ' =adeliadu$ )**/)! Additionally$ they o&ten lac1 uali&ications

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when it comes to wor1ing with children with autism ((ascella ' (olella$ )**@)! Bhen analy9ing issues in the relationships o& parents o& children with autism with pro&essionals$ one must mention another aspect o& those relations$ associated with dated and unproven concepts o& parental contri%ution in the aetiology o& their child#s autism! According to current consensus$ autism %elongs to neurodevelopmental disorders$ and its aetiology is determined %y

FAR EASTERN UNIVERSITY neuro%iological mechanisms (see: 4oldin ' Ru%enstein$ )**;)! "hus$ our 1nowledge a%out the causes o& this disorder has progressed a long way since the Fre&rigerator motherG hypothesis$ popular in the /32*#s (c&! 4arcus et al!$ /335)! -owever$ as Schrei%man ()**2) o%serves$ theories o& psychogenic aetiology o& autism have le&t a climate &ull o& suspicion and distrust in the relationship %etween parents and pro&essionals! "his remar1 was con&irmed %y the &indings o& Avdi$ Eri&&in and Brough ()***)$ who demonstrated that parents suspected pro&essionals o& withholding in&ormation$ %eing <udgmental and controlling! "here is no dou%t that parents o& children with autism must cope not only with pro%lems resulting &rom their child#s developmental disa%ility and challenging %ehaviours$ %ut also with distressing responses o& others to the child#s %ehaviour$ as well as general lac1 o& 1nowledge a%out autism! "he contrast %etween the child#s appearance$ which %etrays no signs o& disa%ility$ and his %ehaviour$ which is perceived as a%normal and FstrangeG$ &re uently puts parents in very unpleasant situations (e!g! Eray$ )**)%, =ortway ' .ohnson$ )**2)! "he child#s %ehaviour is o&ten ta1en to %e a symptom o& poor up%ringing: FPou#re %eing a %ad mother! -e#s %ehaving li1e that %ecause you don#t discipline him! 0& you did it this way you wouldn#t have pro%lems!# "hat 1ind o& stu&&Qyou 1now$ it doesn#t helpG (Farrugia$ )**3$ p! /*/+)! Social disapproval &or the child#s %ehaviour o&ten leads to stigmati9ation$ e7perience o& shame &or parents$ and their e7clusion &rom normal social activities (Farrugia$ )**3)!

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FAR EASTERN UNIVERSITY 6ne o& the aspects that determine the attitudes and %ehaviour towards people with autism is lac1 o& awareness a%out the disorder! Autism still remains an un1nown condition (e!g! -uws ' .ones$ )*/*)! "here is plenty to %e done in this area in order to change negative attitudes towards people with autism$ especially since it has already %een demonstrated that the scope and manner o& providing in&ormation a%out the disorder signi&icantly a&&ects the attitudes and the level o& acceptance &or people with this disa%ility (0o%st et al!$ )**3)!

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Coping Strategies of Mothers having Children with Special 'eeds According to Gehan EL Nabaw Ahmed Moawad ! PhD " that &or most parents$ the %irth o& their child is a <oyous time! -owever$ nearly @O o& parents receive distressing news a%out their child#s health! 0n &act$ a%out every A!2 minutes a parent is told that their child has a serious chronic medical illness$ health de&ect$ disa%ility$ sensory impairment$ or mental retardation! For these parents$ the time o& their child#s %irth may %ecome mi7ed with stress and despair (Barnett 'et al$ )**A)! =arenting is a highly stress&ul <o%$ and %ecoming a parent o& a child with disa%ility is one o& the most stress&ul li&e events that can occur! Families with a child who has special health care needs e7perience li&e di&&erently than other &amilies! 4others are usually the primary caregivers o& these children %ecause most o& them remain in the &amily environment during their treatment and they appear to carry the larger %urden o& care and they may

FAR EASTERN UNIVERSITY &eel a need to %e with their child at all times so they e7perience stress related to coping with the heavy load o& care giving ("hompson$ )*** ' .ames ' Ashwill$ )**5 ' =eters ' .ac1son$ )**3)! Gehan EL Nabaw Ahmed Moawad also stated in his article that mothers can never &ully prepare themselves &or the news that their child is di&&erent! Bhether the diagnosis o& a disa%ility is shortly a&ter %irth or later on in li&e$ &amily dreams and e7pectations suddenly change! 4others may have to &ace immediate decisions a%out their child#s medical care and treatment ((ase8Smith$ )**@)! 4ore ever$ mothers o& children with disa%ilities cope with the same responsi%ilities and pressures that other mothers &ace, however$ these mothers reported higher amounts o& stress and they e7perience greater demands made %y caring &or a child with special needs! "his sense o& stress may %e associated with a child#s characteristics$ greater &inancial and care8giving demands$ &eelings o& %eing unprepared &or the tas1s o& parenting$ and a sense o& loneliness and isolation (Sullivan8Bolyai$ Sadler ' :na&l$ )**A ' 6ruche ' et al$ )*/))! (oping involves psychological resources and coping strategies that help to eliminate$ modi&y$ or manage a stress&ul event or crisis situation! -aving a child with special needs creates a crisis event$ how mothers respond to the stresses o& raising their child with special needs depends on a wide variety o& &actors in&luencing their a%ility to cope$ such as their interpretation o& the crisis event$ the &amily#s sources o& support$ community resources$ and &amily structure !"he personality characteristics o& the &amily mem%ers$ their &inancial

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FAR EASTERN UNIVERSITY status$ educational level$ pro%lem8solving s1ills$ and spirituality all in&luence a &amily#s a%ility to cope! Strong marital relationship and social support also help determine mother ad<ustment (Emerson$ )**A ' Fa9il$ Ballace ' Singh$ )**@)! "he goal o& coping strategies is to strengthen or maintain &amily resources$ reduce the source o& stress or negative emotions$ and achieve a %alance in &amily &unctioning! Strategies directly aimed at coping with the source o& stress$ such as pro%lem solving and see1ing in&ormation are more adaptive strategies than those e&&orts to deny or minimi9e the situation (Bailey ' Smith$ )***)!

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Parental stress in mothers and fathers of children with autism "he ma<ority o& studies on parental stress associated with raising a child with autism have &ocused on mothers! "he idea was to &ind a sta%le$ and at the same time group8speci&ic stress pro&ile! 0n one o& the &irst investigations on the topic$ -olroyd and 4cArthur (/35;) compared stress e7perienced %y mothers o& children with autism and mothers o& children with Down syndrome! Apart &rom common pro%lems related to health$ depressive mood$ sense o& %eing over%urdened$ pessimistic view o& the &uture and limited &amily opportunity$ mothers o& children with autism reported stress associated with ta1ing the child to pu%lic places$ the child#s almost complete dependence on care and lac1 o& access to speciali9ed services! >ater research also showed that mothers o&

FAR EASTERN UNIVERSITY children with autism have a less positive &uture perspective than mothers o& children with Down syndrome (A%%eduto et al! )**@)! Similar results were o%tained %y Bouma and Schweit9er (/33*) in their comparison o& mothers o& children with autism and children with a physical disa%ility and healthy children! 4others o& children with autism e7perienced more strain &rom pro%lems related to the child#s cognitive development$ the need &or constant supervision$ and the perspective o& their child#s continued dependence on care! Behaviour pro%lems o& their child with autism also &eatured as a signi&icant contri%utor to stress! :oegel et al! (/33)) descri%ed a &airly sta%le pattern o& di&&iculties e7perienced %y mothers o& children with autism$ independent &rom the child#s age$ intellectual development$ geographical region or cultural %ac1ground! "he core stress was associated with the child#s &uture$ hisHher cognitive development$ dependence on care and social e7clusion! 0n another study (=isula$ )**5)$ mothers o& children with autism showed higher stress levels than did mothers o& children with Down syndrome on seven o& the /2 su%scales o& the Ruestionnaire o& Resources and Stress (-olroyd$ /3+5)! "he largest di&&erences %etween groups were &ound &or overprotection H dependency o& the child and childKs di&&icult personality characteristics! 4others o& children with autism were also more concerned a%out their child#s dependence on e7ternal care! Similar results were o%tained %y Dale$ .ahoda and :nott ()**;)!

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FAR EASTERN UNIVERSITY $!Synthesis "o summari9e the present review o& research on stress in parents o& children with autism$ signi&icant sources o& stress include$ among others$ lateness and di&&iculty in o%taining diagnosis$ untypical and inconsistent development o& the child$ and %ehavioral pro%lems$ with particular emphasis o& challenging %ehavior in pu%lic! =arents are also hampered %y the lac1 o& systemic solutions &or people with autism$ ignorance o& pro&essionals$ and general lac1 o& understanding &or their pro%lems! "he situation is &urther complicated %y the &act that people with autism re uire considera%le and wide8 ranging support &or a signi&icant portion o& their lives$ and that currently used intervention methods &all short o& e7pectations! "hese pro%lems a&&ect various individuals to di&&erent degrees and may actually %e untypical in a particular case$ which is why the e7periences o& di&&erent &amilies can %e so divergent! Severe stress e7perienced %y parents o& children with autism has pro&ound conse uences &or their health$ well8%eing$ interactions with the child and &amily li&e! Cevertheless$ it is still di&&icult to pinpoint the e7act mechanism %ehind these conse uences! 0t has %een demonstrated that parents o& these children have poorer health and lower sense o& psychological well8%eing than parents o& children with other dys&unctions (e!g! A%%eduto et al!$ )**@,)! =hetrasuwan and 4iles ()**3) have also shown that mothers o& children with ASD who reported higher stress$ presented with more symptoms o& depression and lower levels o& well8%eing than mothers with lower stress! 0t is not clear$

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FAR EASTERN UNIVERSITY however$ whether autism is uni ue in that respect$ or i& other disorders a&&ect parents# well8 %eing similarly! Ereen%erg and colleagues ()**@) &ound no di&&erences in terms o& depression$ well8%eing and health %etween mothers o& adults with autism$ Down syndrome and schi9ophrenia Studies have also shown that parental stress a&&ects such aspects o& &amily li&e as spending time together$ capacity &or spontaneous and &le7i%le planning and marital relationship (-utton ' (aron$ )**2)$ and lower the e&&icacy o& early interventions in children with ASD (6s%orne et al!$ )**+)! Richard -astings ()**)) put &orward a theoretical model com%ining the child#s %ehavior pro%lems with developmental disa%ility$ parental stress and parenting %ehavior! "he model proposes the &ollowing chain o& relations: (/) child#s %ehavior pro%lems lead to parent#s stress$ ()) parental stress a&&ects the way parent acts toward the child$ (A) the parent#s %ehavior towards the child rein&orces the development and persistence o& %ehavior pro%lems! "he model has not %een &ully tested yet$ %ut some data partially support its validity (e!g! Estes et al!$ )**3)! "here is no dou%t that the application o& the stress8coping paradigm in research on the circumstances o& parents o& children with autism has yielded a lot o& interesting and important results$ improving our understanding o& the di&&iculties they must &ace! "hese &indings help develop %etter methods o& supporting &amilies o& children with autism! -owever$ data in this &ield are o&ten inconsistent$ most li1ely due to methodological issues! Ade uate tools &or

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FAR EASTERN UNIVERSITY assessing parental stress still need to %e designed$ as shown %y validity analyses o& e7isting uestionnaires (e!g! Laidman8Lait et al!$ )*/*)!

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Chapter 2 M3(-ODS A'D P)OC3D*)3S "his chapter discusses the research design$ selection and description o& the respondents$ the instruments used and validation$ data gathering procedures and the statistical treatment data!

)esearch Design "he researcher used the comparative method o& research! "he sel&8made survey uestionnaire and standardi4ed 5uestionnaire served as a tool &or

FAR EASTERN UNIVERSITY gathering data in&ormation &or the study! "he in&ormation gathered %y the researcher were those related to the results o& the survey given to the respondents! "he survey aims to get analysis$ and appropriate

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recommendations &or an action plan which will help the mother#s to cope with their needs and their child#s needs! "hree sets o& sel&8made uestionnaires were distri%uted &or the mother o& children with ASD and mother o& children with DS! "his is to determine the di&&erences %etween the stressors e7perienced %y the mothers! "he &irst part includes the pro&ile o& the mothers o& children with ASD and DS, the second part includes the di&&erent common stressors, and the third part includes the coping strategies o& mothers! 0n the second part o& the uestionnaire$ the responses are guided %y the &ollowing scale: E7tremely Stress&ul$ 4oderately Stress&ul$ Stress&ul$ Somewhat Stress&ul$ and Cot Stress&ul! "he researcher provided di&&erent statements that %est descri%e the given stressors! 0n the third part o& the uestionnaire$ the responses are guided %y the &ollowing scale: Jery help&ul$ 4oderately -elp&ul$ -elp&ul$ Somewhat -elp&ul and Cot -elp&ul! Along with these sel&8made uestionnaire is the standardi9ed Bec1 Depression 0nventory

(BD0) created %y Dr! Aaron "! Bec1! "he Bec1 Depression 0nventory (BD0) is a )/8item$ sel&8report rating inventory that measures characteristic attitudes and symptoms o& depression (Bec1$ et al!$ /3;/)! 0n the standardi9ed uestionnaire$ the responses are guided %y minimal depression$ mild depression$ moderate depression$ severe depression!

FAR EASTERN UNIVERSITY

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)esearch Participants "he respondents o& the study were mothers o& children with Autism and Down syndrome &rom selected private and pu%lic S=ED schools in 4etro 4anila! A* mothers were chosen &or interview and &or survey uestions! "he mother respondents were purposely selected &rom the %asis o& their involvement in handling their child diagnosed having Autism and Down syndrome! "he researcher contacted the mothers and e7plained the purpose o& the study! "he investigator prepared them &or the actual meeting %e&ore the interview to answer any preliminary uestions! At the time o& the &irst interview the researcher o%tained in&ormed consent and permission to tape record the conversation! "he interview was conducted during their ne7t visit in the special school! 0n depth interviews were conducted in a selected room in the special school with all privacy! "he interviews were started with open ended clari&ying uestions li1e FBould you share with me your responses when you heard that your child is having DownKs syndrome!G Each interview was tape recorded!

)esearch 3nvironment "he study was &irst conducted at Al%ert Elementary School at Dapitan were in @ mothers were &irst interviewed and answered the survey uestions! Ce7t was at (hild8 =arent >earning (enter at 4ari1ina was in mostly the rest o& the interview and survey was done!

FAR EASTERN UNIVERSITY )esearch Procedure "he research process went through the &ollowing stages: a!) Development o& the research instrument! "his was the result o& the researcher#s numerous readings on maternal stress and coping strategies in handling children with Autism and Down syndrome! %!) Jalidation o& the instruments! "his was done %y su%mitting the instruments to the panel o& e7perts &or criti ue and revisions including the &ielding o& the uestionnaires to the respondents! c!) Data Eathering! "his procedure was accomplished through the coordination o& the School and 4others who were chosen and involved in the interview and survey! "he distri%ution and gathering o& the uestionnaires to the 4other respondents was done with the help o& the &aculty mem%ers o& the schools chosen who &ielded the interview and uestionnaires to the respondents! d!) Analysis and 0nterpretation o& Data! "he data gathered &rom the respondents were ta%ulated$ analy9ed and interpreted through the help o& uali&ied statistician! A &inal report on the &indings were integrated and summari9ed to &ormulate conclusions! e!) Selection and Description o& Respondents! "he selection o& the respondents i& the study was completed %y choosing the right and

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FAR EASTERN UNIVERSITY appropriate 4others who are willing to share their struggles and how the overcome those struggles in handling their child! &nstrument used and its "alidation 0n conducting this study$ the researcher used a sel&8survey8 uestionnaire in con<unction with another uestionnaire developed in relation o& the study

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which included data needed to answer the pro%lems raised in the study! "he instrument was presented to the adviser &or validation! A&ter his approval$ it was consolidated and validated %y three pro&essional teachers! Part %: Personal Profile /!/ age$ /!) gender$ /!A civil status$ /!@ educational attainment$ /!2 num%er o& children in the &amily$ and /!; occupation Part 1: Stressors &nterpretation SCA#3 "A#*3 @!**82!** A!2*8@!@3 )!2*8A!@3 /!2*8)!@3 D3SC)&P(&O' ES"RE4E>P S"RESSFU> 46DERA"E>P S"RESSFU> S"RESSFU> S64EB-A" &'(3)P)3(A(&O' JERP CEEA"0JE CEEA"0JE CEU"RA> =6S0"0JE

FAR EASTERN UNIVERSITY S"RESSFU> C6" S"RESSFU>

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/!**8/!@3

JERP =6S0"0JE

Part 2: $ec+ Depression &nventory 6$D&7&&8 &nterpretation (O(A# SCO)3 *8/A /@8/3 )*8)+ )38;A #3"3# O. D3P)3SS&O' 4inimal Depression 4ild Depression 4oderate Depression Severe Depression

Part 9: Coping Strategy &nterpretation SCA#3 "A#*3 @!**82!** A!2*8@!@3 D3SC)&P(&O' ES"RE4E>P -E>=FU> 46DERA"E>P -E>=FU> )!2*8A!@3 /!2*8)!@3 /!**8/!@3 -E>=FU> S64EB-A" -E>=FU> C6" -E>=FU> CEU"RA> CEEA"0JE JERP CEEA"0JE &'(3)P)3(A(&O' JERP =6S0"0JE =6S0"0JE

Data Gathering Procedure "he process o& data collection that was utili9ed is the researcher8 made uestionnaire! "he researcher %egan %y giving a letter as1ing permission

FAR EASTERN UNIVERSITY &rom the =rincipals o& the two schools to conduct a survey! 0n addition$ there was also a cover letter e7plaining the reason and guaranteeing the con&identiality o& the responses gathered! "he letter given was signed %y the researcher and the advisory! "he uestionnaire was then distri%uted to the respondents! A&ter the meeting$ the uestionnaire were distri%uted$ retrieved and data were collected!

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