Psychological Stress, Depression, Coping Strategies among Mothers Of Children with Autism Spectrum...

8/12/2019 Psychological Stress, Depression, Coping Strategies among Mothers Of Children with Autism Spectrum Disorder And Down Syndrome: A Comparative Study

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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 %


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&'()OD*C(&O'

Raising a child with autism spectrum disorder (ASD) and Down Syndrome

(DS) is uniuely 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!


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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


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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@$ 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@$ United States o& America estimated that 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 (ing ' =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$ **+)!
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770735/#R15http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770735/#R15http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770735/#R31http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770735/#R37http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770735/#R41http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770735/#R31http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770735/#R37http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770735/#R41http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770735/#R15http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770735/#R15


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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 giving up normal &amily activities and outings#$ lac1 o& spontaneity or

&le7i%ility in &amily li&e#$ lac1 o& personal social activities#$ stress surrounding the

marital relationship#$ and di&&iculties to maintain employment or to pursue

outside activities# (-utton ' aron$ **2, 4ontes ' -alterman$ **5, 4yers$

4ac1intosh$ ' oin ochel$ **3, =helps$ 4cammon$ uensch$ ' olden$

**3)!

During /+;; a British physician$ .ohn >angdon Down$ &or whom the

syndrome is now named$ &irst descri%ed Down syndrome$ as 4ongolism!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

=ediatricianHeneticist =ro&essor .erome >e


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with Down syndrome have an e7tra chromosomeI


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-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 reuire 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 advantageousG$ that disorder is Down

syndrome! =revious research %y L! Stoneman (**5) claims that compared to

Autism there is a Down 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


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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 Prolem

"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:

/! hat is the pro&ile o& the motherHs o& children with Autism Spectrum

DisorderHDown Syndrome in terms o&:

/!/ age$

/! gender$

/! 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

!/! =ro%lems in the &amilyM

! internal Stress

!!/ Feelings %y %eing


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@! 0n what ways do mothers o& ASD and DS di&&er in terms o& coping strategies in

handling their childrenM

-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

! "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 uniue

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


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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

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!


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0n outline$ this study is signi&icant in respect to the &ollowing:

/! Parentsto 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!

! .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 uality management and give

accurate recommendations!

(heoretical .ramewor+

"his study measured the psychological stress$ depression and coping

strategies among parents o& children with Autism and Down syndrome!

"hree ma


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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 =arent8hild 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 parent8child 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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parenting stress$ "he =arenting Stress 0nde7 (=S0, /3+H/332)! Although this

theory is the oldest$ it still dominates the literature! Rather than a theory that

e7plains the mechanism or howG 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

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


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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$ ' 4caughey$ /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 dys&unctionalG and

normalG &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!

iven 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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&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)!

Conceptual Paradigm

hat 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 techniue &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 Anormal 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


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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

participantsKe7pectations are changed a&ter the child was diagnosedwith

Autism or Down syndrome! 4ost o& the mothers e7pressed as they need

to spend more time with the child!

! -igh $onding etween .amily Memers! "he third theme was high

%onding %etween &amily mem%ers! Every mother e7pressed they are

maintaininggood 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 Aout the *npredictale .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%outtheir child in the near and distant &uture!

0mmediate worries were the childKs school placement and health status!

4othersK ma


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2! Societal and Community Acceptance! "he &i&th theme was societal and

community acceptance! 4ost o& the mothers e7pressed they got

adeuate 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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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 * 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 reuested 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!

Definition of (erms

"he &ollowing de&initions have %een selected to promptly understand the terms

used on the di&&erent areas o& the study:


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Autism is a severe disorder$ with an onset %e&ore age years old$ which is

characteri9ed %y a%normalities in social &unctioning$ language and

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 syndromeis 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 Stressis 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


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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!

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&

adeuate 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 8 years (Si1los '

erns$ **5)! Among the multiple &actors contri%uting to this situation$ a ma


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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 /28@O give advice on choosing a medicalHeducational program!

"he results o& research %y -all and ra&& (*//) 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

when it comes to wor1ing with children with autism (ascella ' olella$ **@)!

hen 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


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neuro%iological mechanisms (see: 4oldin ' Ru%enstein$ **;)! "hus$ our

1nowledge a%out the causes o& this disorder has progressed a long way since

the re&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$ ri&&in and Brough (***)$ who demonstrated that parents

suspected pro&essionals o& withholding in&ormation$ %eing


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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)!

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


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&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 Moawadalso stated in his article that mothers

can never &ully prepare themselves &or the news that their child is di&&erent!

hether 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$ ** ' 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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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


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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 uestionnaire 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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$!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 reuire 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 conseuences &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 conseuences! 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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however$ whether autism is uniue in that respect$ or i& other disorders a&&ect

parents# well8 %eing similarly! reen%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$ () 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! Adeuate tools &or


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assessing parental stress still need to %e designed$ as shown %y validity

analyses o& e7isting uestionnaires (e!g! Laidman8Lait et al!$ */*)!

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


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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

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!


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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&8survey8uestionnaire

in con


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S"RESSFU>

/!**8/!@3 C6" S"RESSFU> JERP =6S0"0JE

Part 2: $ec+ Depression &nventory 6$D&7&&8 &nterpretation

(O(A# SCO)3 #3"3# O. D3P)3SS&O'

*8/ 4inimal Depression

/@8/3 4ild Depression

*8+ 4oderate Depression

38; Severe Depression

Part 9: Coping Strategy &nterpretation

SCA#3 "A#*3 D3SC)&P(&O' &'(3)P)3(A(&O'

@!**82!** E"RE4E>P -E>=FU> JERP =6S0"0JE

!2*8@!@3 46DERA"E>P

-E>=FU>

=6S0"0JE

!2*8!@3 -E>=FU> CEU"RA>

/!2*8!@3 S64E-A" -E>=FU> CEA"0JE

/!**8/!@3 C6" -E>=FU> JERP CEA"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


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&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!

Psychological Stress, Depression, Coping Strategies among Mothers Of Children with Autism Spectrum...

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