Relieving Parental Stress and Depression (IAN)

[Guest guest]

>From The Kennedy Krieger Institute

Relieving Parental Stress and Depression: How Helping Parents Helps

Children

Connie , Ph.D.?IAN Online Community Facilitator?Kennedy Krieger

Institute?Email: ian@... <mailto:ian%40kennedykrieger.org>

Date First Published: December 14, 2007

It is not easy to be the parent of a child on the autism spectrum. There

are joyous moments, but there is no denying the challenges parents face,

and the toll these take. Parents worry themselves sick, fight for

services, sacrifice careers, sink into debt, and rage at the injustice

of it all. Parents grieve.

Researchers have tried to understand the strain involved, and its

effects. They have studied depression and anxiety, as well as stress and

coping, in the parents of children with disabilities. If we can

understand what stresses have the most negative impact on families, we

can move to address them. If we can figure out what psychiatric issues

run in families, we can be ready to intervene sooner rather than later,

helping both parents and children at risk to function better and lead

more satisfying lives.

Stress and Well-being

Most parents of children with disabilities or chronic health problems

suffer a great deal of stress. There is evidence, however, that parents

of children on the autism spectrum suffer the most stress of all. 1

There are several reasons why the stress of those parenting children

with an autism spectrum disorder (ASD) is so high. All parents of

children with disabilities must cope with grief, worries about the

future, and the struggle to find and obtain appropriate services.

Parents of children with ASDs face some additional stressors. First,

they often live with uncertainty about what caused their child's autism,

as well as possible guilt (no matter how undeserved) over whether they

did or failed to do something that led to their child's ASD.

Second, the core disability associated with ASDs is a social one. Most

parents hope for a warm and loving relationship with their child. It is

bewildering to find you have a baby who does not like to be held, or a

child who will not look into your eyes. Parents adapt, learning to love

the way their child loves, but usually not without having passed through

some confusion and pain.

Third, no matter what their specific ASD diagnosis or IQ, children on

the autism spectrum often have problem behaviors, from refusal to sleep

to intense and frequent tantrums to extreme rigidity. These behaviors

can make living with them day-to-day very trying and lead to another

variety of guilt: the kind you experience when you are not feeling

loving toward a difficult child. In addition, such behaviors strain the

entire family, impacting sibling relationships and marriages.

A number of studies have specifically linked the troublesome behaviors

of children on the autism spectrum to high levels of parental stress.

2,3,4 Such stress is not only damaging in its own right, but also has

been linked to higher rates of depression. 5

Depression

When a child is diagnosed with an autism spectrum disorder, grief and

worry are natural reactions. Parents struggle to learn everything they

can about autism as quickly as possible, forced to make major decisions

with far from perfect knowledge while navigating complex education and

healthcare bureaucracies. Some suffer periods of sadness in addition to

periods of stress. Some may feel more than sadness. They may actually

become clinically depressed.

Everyone feels down now and then, and parents of children with ASDs may

feel down more often than most. Clinical depression is more than feeling

down, however. It is not " the blues " but a diagnosable medical

condition. A major depressive episode, as defined by the psychiatric

bible -- the Diagnostic and Statistical Manual of Mental Disorders,

Fourth Edition (DSM-IV) 6 -- must include at least five of the following

symptoms:

0. Depressed mood most of the day, nearly every day, as indicated by

either subjective report (e.g., feels sad or empty) or observation made

by others (e.g., appears tearful).

0. Markedly diminished interest or pleasure in all, or almost all,

activities most of the day, nearly every day (as indicated by either

subjective account or observation made by others).

0. Significant weight loss when not dieting or weight gain (e.g., a

change of more than 5% of body weight in a month), or decrease or

increase in appetite nearly every day.

0. Insomnia or hypersomnia nearly every day. (In other words, a person

doesn't sleep or sleeps far more than usual.)

0. Psychomotor agitation or retardation nearly every day (observable by

others, not merely subjective feelings of restlessness or being slowed

down).

0. Fatigue or loss of energy nearly every day.

0. Feelings of worthlessness or excessive or inappropriate guilt (which

may be delusional) nearly every day (not merely self-reproach or guilt

about being sick).

0. Diminished ability to think or concentrate, or indecisiveness, nearly

every day (either by subjective account or as observed by others).

0. Recurrent thoughts of death (not just fear of dying), recurrent

suicidal ideation without a specific plan, or a suicide attempt, or a

specific plan for committing suicide.

All of a person's symptoms must have been present during the same

two-week period and must represent a change from previous functioning.

At least one of the symptoms must be depressed mood or loss of interest

or pleasure.

The important thing to note is that a psychiatrist will not give a

diagnosis of depression to a person who just feels low. Beyond the mood

issue, there are physical components: trouble sleeping or sleeping

constantly, restlessness or lethargy, increased or decreased appetite,

and fatigue.

Stress and Depression: Connections

Researchers are trying to learn which parents of children with ASD are

sad and stressed, and which suffer from true clinical depression. They

are also exploring how stress and depression may be related. Some of the

connections are as follows:

Depression and stress are both believed to be impacted by

neurobiological factors, such as neurotransmitters that are not working

properly. Anti-depressant medications can help by intervening in this

process that has gone wrong.

Depression and stress are both known to be influenced by attitudes and

ways of thinking and living that are associated with resilience, that

is, with being able to keep managing through high levels of stress.

These include optimism and humor, the ability to accept a situation and

move on, a tendency to cope by taking action (as opposed to falling into

a passive, resigned state), spiritual belief, and altruism and advocacy.

7 Cognitive-behaviora

l therapy is an example of a treatment that helps people change their

way of thinking to fight depression. Empowering people helps them, too,

as they can become less passive and more active in trying to better

their situation.

Depression and stress may share a genetic basis. Recent scientific

studies show that a naturally occurring variation of a specific gene is

linked to stress and depression. Individuals with this gene seem to

experience stressful life events more intensely than people with a

different variation of the gene. They are also more likely to suffer

symptoms of depression. This is evidence of a gene-by-environment

interaction. Stressful events occur, but genetics influences how deeply

their impact is felt and the likelihood that depression will follow.

8,9,10,11

Some researchers have actually found evidence of a possible genetic

connection between major mood disorders and autism. Studies have found

both parents of children with ASDs and the children with ASDs themselves

are more prone to major depressive disorder than other parents and

children. 12,13 (This may help to explain the very high figures for

reported depression in parents of children with ASDs found by the IAN

Project. See Related IAN Research Findings, below.)

If such a connection is confirmed, it will be clear that there is some

biological, genetic link between major mood disorders and at least some

types of autism. This may lead to new insights about both types of

disorder, and hopefully, to interventions. Meanwhile, those working with

families will know they should be on the look out for mood disorders

both in children with ASDs and in family members. Hopefully,

intervention will then occur sooner rather than later, with better

outcomes for all.

Gender Differences: Moms and Dads

Researchers have found that mothers of children with autism, as compared

with mothers of unaffected children or children with other disabilities,

suffer the most from depressive symptoms. 14,15,16 Fathers also suffer

from such symptoms, but to a lesser extent than mothers. This may be due

in part to a gender difference in how distress is expressed. The DSM-IV,

for example, states that irritability can be a symptom of depression for

children and adolescents. Some researchers are now suggesting that this

" irritability " criterion might be valid for men, as well. 17

Others claim that men tend to become depressed in reaction to different

stressors than women do, with problems at work and divorce felt more

keenly by men, and problems in their network of interpersonal

relationships felt more keenly by women. 18 (Note that having a child

with a disability is more likely to disrupt a mother's relationships

with relatives, friends, school personnel, and health-care

representatives than it is to disrupt a father's job.) Still others

theorize that there are many stressors that impact women more often than

men, including sexual victimization, poverty, single parenthood, and the

burdens of caring for the elderly, which may account for some of the

difference. 19

Furthermore, research has shown that women in families with a child on

the spectrum tend to bear the brunt of day-to-day burdens and domestic

labor; end up responsible for managing the higher levels of conflict in

these families (between autistic and nonautistic siblings, for example);

and receive more blame from outsiders and their spouse for their child's

behavior. 20 Any of these could certainly detract from a caregiver's

ability to cope.

Chicken and Egg: Child Behavior and Parent Distress

Does a child's difficult behavior make parents depressed, or is it a

parent's depression that adds to a child's difficulties? 21,22 Thanks to

the specter of the now-debunked refrigerator mother theory, this is a

touchy question. The refrigerator mother theory blamed a mother's cold,

rejecting stance toward her child for that child's autism. Wrote the

producers of a documentary film on the subject:

" If anything could be more devastating to a mother than having her child

succumb to autism, it might be having to shoulder the blame for the

affliction. That's what happened to a generation of mothers in the 1950s

and '60s, when medical orthodoxy blamed autism on the mother's failure

to bond with her child. Though wholly discredited today, the

'refrigerator mother' diagnosis condemned thousands of autistic children

to questionable therapies, and their mothers to a long nightmare of

self-doubt and guilt. " 23

Mother-blaming is the last thing anyone wants to do now.

On the other hand, there is no question that a parent in distress is not

likely to parent as well as one who is feeling in balance and able to

handle whatever may come. Maternal depression, for example, has been

shown to be associated with psychosocial maladjustment among children

with disabilities. 24 Remaining calm and matter-of-fact while a child

screams does not come easily to anyone, least of all to someone already

feeling unable to cope. Yet screaming back will likely only escalate the

situation, spinning a child with little ability to self-regulate further

out of control.

Family systems theory 25,26,27,28,29 describes the back-and-forth of the

situation, how each person's distress impacts the others, and vice

versa. Helping anyone in the system has the potential to help all.

30,31,32 In other words, improve child behavior and Mom and Dad may

become less stressed and better able to manage whatever may come.

Decrease Mom's and Dad's stress or depression and they may be more able

to manage their child's behavior in a firm and calm manner, helping the

child to stay in better balance.

In fact, research has shown that teaching parents skills that help them

to improve their child's behavior, 33 or teaching them skills that help

them cope through their own distress, 34 is very helpful. Moreover, it

appears that providing both types of interventions is more effective

than providing either strategy alone. 35

It is important to note, however, that it is not only the coping skills

of parents that need to be addressed. The development of better

treatments that improve children's functioning will go a long way toward

helping children and their families. The provision of appropriate

services, including respite care, will help families. Improving the

systems with which families must interact will help families. The better

the programs offered by schools, state departments of disability, or

health-care organizations, the less stress families will suffer when

trying to obtain help for their children.

How Parents Are Doing Matters

Sometimes you will hear a desperate parent say, " Forget about me. It

doesn't matter how I feel. Just take care of my child. " This sentiment

is understandable, but it ignores that the family is a system, and that

each person has an impact on the others. Decreasing the stress faced by

parents of children with ASDs, and doing everything possible to improve

their mental health and ability to cope, is a worthwhile goal. Helping

parents helps children, too.

Future IAN questionnaires in development that will help to answer

questions raised in this article:

0. Maternal/Paternal Depression Questionnaire

0. Maternal/Paternal Anxiety Questionnaire

0. Maternal/Paternal Stress Questionnaire

0. Child Behavior Questionnaire

0. Social and Financial Impact Questionnaire

Related IAN Research Findings

0. Issues of Mood and Attention Mini-Report

0. Mothers and Depression

0. Fathers and Depression

View References for this Article