By Connie Anderson, PhD | Interactive Autism Community Network
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
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:
- 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).
- 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).
- 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.
- Insomnia or hypersomnia nearly every day. (In other words, a person doesn’t sleep or sleeps far more than usual.)
- Psychomotor agitation or retardation nearly every day (observable by others, not merely subjective feelings of restlessness or being slowed down).
- Fatigue or loss of energy nearly every day.
- Feelings of worthlessness or excessive or inappropriate guilt (which may be delusional) nearly every day (not merely self-reproach or guilt about being sick).
- Diminished ability to think or concentrate, or indecisiveness, nearly every day (either by subjective account or as observed by others).
- 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-behavioral 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.