A SUMMARY OF CURRENT RESEARCH

Abstract

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The combined effects of chronic emotional distress and physical exhaustion experienced by caregivers of
children with autism have been likened to effects of Post-Traumatic Stress Disorder experienced by combat
veterans (Diament, 2009)

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This poster session will help practitioners:

Have greater understanding and sensitivity of Caregiver Stress Syndrome (CSS)

Understand how culture impacts CSS

Understand prevention and treatment approaches for CSS

Tamara McKlveen, South University Graduate Student

Antoinette Hollis, Ed.D, LPC, NCC

Introduction

Addressing Diversity

The Implications of Caregiver Stress

Syndrome in Autism

Help practitioners recognize signs and symptoms of CSS

Further Discussion

Despite the ever-increasing prevalence of autism, the autism community remains greatly underserved
This is especially true of families attempting to care for those with autism, who have many unmet needs
including ambivalent loss, exhaustion, and isolation
These factors make care givers vulnerable to Caregiver Stress Syndrome

Statement of the Problem

Caregiver Stress Syndrome (CSS) occurs when the emotional and physical toll of round the clock care
begin to impact the health and well-being of the caregiver (Family Caregiver Alliance, 2014).

Literature Review, Continued

Linked Lives

Doubt, confusion, helplessness, hopelessness, and isolation set in, leading to intense episodes of anxiety
and depression

The overwhelming stress may contribute to inability to make decisions which may lead to delay in
treatment and poor judgment in crucial moments.

CAREGIVER STRESS
SYNDROME
Caregiver Stress Syndrome is the
emotional and physical strain of
caregiving.

Learning Objectives

2. Increased Practitioner Sensitivity

Why is it important to leave judgment at the door and be able to recognize signs of CSS in parents of
children with autism. Understand how both practitioner and family culture impacts bias in diagnosis and
treatment.

3.Coping Strategies
CSS effects caregivers ability to provide continued appropriate care and advocate for services for their
child with autism. Prevention and treatment strategies based on the Wheel of Wellness will be discussed
(Witmer, Sweeney, & Myers, 1998).

It is therefore critical for parents of children with autism do their best to maintain their emotional
wellness in order to avoid episodes of inattentiveness and indecisiveness that may put their children at
risk.

Literature Review

1.Understanding Caregiver Stress Syndrome

What is CSS? What are the signs and symptoms? How does CSS effect the mind and body? Understand
the concept of linked lives and why parents of children with autism are at risk for CSS (Elder, Johnson,
Crosnoe, 2003). How does CSS impact parenting effectiveness? What are some cross-cultural
implications of CSS?

The leading cause of death in children with autism are behaviors related to elopement and wandering
(Autism Speaks, 2014)

Caring for individuals with a disability is stressful and contributes to physical and psychiatric morbidity.
Researchers have suggested that the combination of loss, prolonged distress, the physical demands of
caregiving, and vulnerabilities of caregivers may compromise physical functioning and increase the risk
of health problems
The majority of caregivers go through a period of shock followed by a major adjustment in their roles, resulting in anger, resentment, and guilt (Vedhara, Shanks, Anderson, & Lightman, 2000)
Parents of children with low functioning autism live in a state of hypervigilance that contributes to
mental and physiological exhaustion
Studies suggest that the physical symptoms of caregiver stress are the result of prolonged and elevated
levels of stress hormone circulating through the body
According to Diament (2009), hormone levels of children with autism are consistent with those seen in
soldiers in combat
Chronic exposure to high levels of hormones may compromise glucose regulation, immune functioning,
and mental activity
As a group, caregivers report more anxiety, depression, and substance use (Schulz & Beach, 1999)
Recent research suggests caregiver stress level is impacted by how we feel about being a caregiver
(Vitaliano, Scanlan, Jianping, Savage, Hirsch & Siegler, 2002)

The theory of linked lives suggests that parents and children have a symbiotic relationship; thus, the
emotional well-being and health affects the emotional well-being and health of the other (Elder,
Johnson, & Crosnoe, 2003)
The unique circumstance of parenting a child with autism may strengthen this impact (Hartley, Barker,
Baker, Seltzer, & Greenberg, 2012)
A childs emotional and cognitive dysregulation may negatively impact the parents health, which in
turn negatively impacts the behaviors of the child with autism

Prevention and Treatment Strategies

The Wheel of Wellness is one model of self-care that can help care givers
learn about healthy balance (Witmer, Sweeney & Meyers, 1998)
This model is grounded in the Adlerian approach to holistic counseling
(Newsome & Gladding, 2014)
Research suggests that a families ability to use humor as a coping mechanism reduces caregiver stress
(Rieger & McGrail, 2013)
Treatment should address not only stress reduction and self-care, but also ambivalent loss and grief
when applicable
Identify cognitive distortions that keep a person trapped in destructive cycles

Tools for moving forward (Family Caregiver Alliance, 2014):

1. Reducing personal stresslearn to recognize and manage warning symptoms
2. Setting reasonable goalsschedule breaks and healthy, fun filled activities
3. Seek solutionsidentify problems, list possibilities, try something instead of doing nothing!
4. Communicate constructivelyUse I messages instead of blaming statements
5. Ask for and accept helpMany people refuse help; make a list of things others could help with
6. Create solid healthcare partnershipsfind a team that makes you feel valued and listened to
7. Exerciseincreases sleep, reduces tension and depression
8. Learn from emotionsdiscomfort means a change may be in order.
Remember: Many families coping with autism are so involved in trying to find resources for the child
that they forget to take care of themselves, individually and as a family; most practitioners never address
this issue! Always remember the family perspective.

Research suggests that cross-cultural issues impact autism diagnosis, treatment, and maternal stress.
Language barriers may delay screening, impacting early diagnosis and access to resources (Mandell,
Wiggins, Carpenter, Daniels, DiGuiseppi, Durkin, & Kirby, 2009)
Cultural norms must be accounted for when considering diagnostic criteria, such as frequency of eye
contact and language pragmatics
Cultural values also impact how autism is identified and understood (Norbury & Sparks, 2013)
Values of mothers in different cultures impacts symptoms detected
Mexican-Americans tend to value a childs ability to be polite, obey, and be a good student
Caucasians tend to value self-directed learning, social success, and the ability to think for oneself
(Rodriguez & Olswang, 2003)
African-Americans tend to value the ability to listen and follow rules (El-Ghoroury & Krackow,
2012)
Cultural values also impact maternal stress in caregiving (Magana & Smith, 2006)
Latino values place high value on co-residence and continued care of adult children with autism
Caucasian mothers value independence and may be less satisfied with co-residence

References
Autism Speaks. (2014). Resource library. Retrieved February 13, 2015 from https://www.autismspeaks.org/
family-services/resource-library
Barker, E., Hartley, S., Seltzer, M., Greenberg, J., Floyd, F., Orsmond, G. (2011). Trajectories of emotional
well being in mothers of adolescents and adults with autism. Developmental Psychology 47(2): 551561. doi: 10.1037/a0021268
Diament, M. (2009). Autism moms have stress similar to combat soldiers. Retrieved from http://
www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/ on February 13, 2015.
Elder, G., Johnson, M. & Crosnoe, R. (2003). The emergence and development of life course theory. In JT
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