IAN Research Report #7: Parental Depression History
The Interactive Autism Network (IAN) Project is the nation's largest online autism research effort. Parents of children with autism spectrum disorders (ASDs) who earlier answered IAN's Basic Medical History survey reported levels of depression much higher than those in the general population. To better understand the onset and severity of depressive symptoms, as well as indicators of family stress, IAN developed an in-depth Parental Depression History Questionnaire. In this report, we present preliminary findings on parental mood disorders. (Family stress will be addressed in a future report.)
According to the IAN data, 44% of mothers and 28% of fathers report they have been professionally diagnosed with either depression or bipolar disorder at some point in their lives. In more than 50% of cases, the mood disorder seems to have occurred before the birth of their child(ren) with ASD. This has important implications for both autism research and provision of family services.
For background on mood disorders, their possible link to autism, and the development of the Parental Depression History Questionnaire, read on. To skip to the questionnaire's results, click here.
Families of Children on the Spectrum Ask Questions about Depression
Researchers and families alike expressed interest in the startling levels of depression reported by parents responding to IAN's earlier Basic Mother/Father Medical History questionnaire. Through email and the IAN Discussion Forum, family members contributed a diversity of comments:
- "I wonder how many parents were treated for depression due to the situation caused by having a child on the spectrum? There could be a lot of parents that were treated for depression after having their child because of the situation it created."
- "Personally, I have struggled with depression all my life...diagnosed with clinical depression and it runs in my family… and there have even been a few cases of bi-polar throughout the family and most all of us are OCD (obsessive-compulsive disorder) and/or suffer anxiety. I want to know if this factors into the ASD?"
- "I am a mom of 3 boys on the spectrum. I also recently discovered my husband was misdiagnosed as a child, and has Aspergers. I had never been depressed prior to my children's diagnosis."
These comments encapsulate why this topic is so crucial. Families coping with depression need assistance. What's more, they want to understand: How many parents have actually been diagnosed with a mood disorder by a professional, and how many have had "the blues" due to the stress of raising a child on the autism spectrum? Do most parents only become depressed after the birth of their child with an ASD? How many suffered depression even before that?
The answers to these questions are important for several reasons. First of all, if a significant number of parents of children with ASDs suffer from depression, then health care providers and other professionals caring for children with ASD should know this. They should be aware that this additional issue may be making it even harder for a specific family, and should be ready with information and referrals so parents can get assistance if they need it. (Helping parents will also help children who can only benefit if their parents are feeling more able to cope.)
Next, recognizing and documenting the level of stress families of children with ASD are facing, and the cost of that stress in human terms, will help autism advocates convey the impact of ASD on families. (The Parental Depression History Questionnaire included questions about family stress, and we will have a separate report on that data at a later date.)
Lastly, it has been proposed that a certain subtype of autism may be associated with a family history of mood disorders.1,2,3 So far, researchers have been able to identify few meaningful subtypes of autism based on observable and measurable genetic, biomedical, and behavioral traits. Known causes of autism, such as fragile X syndrome, account for only a small number of cases.4,5 It is strongly suspected that there are truly different kinds of autism, with different causes and different profiles, not to mention different ideal treatments. Until we can identify autism subtypes, research studies may be mixing several subtypes of autism together -- just like mixing apples and oranges -- and getting confusing results. Could a family history of mood disorder be linked to a specific subtype of ASD? If so, it would be a significant step towards unlocking subtypes.
Parents' Input Shapes the Depression History Questionnaire
A whole array of possible questionnaire topics was on the table at IAN in the summer of 2007. The decision to develop a depression history survey was based in large part on the substantial interest shown by families, as discussed above.
In the fall of 2007, a small group of researchers met to begin development of the questionnaire. Each and every one of them was also the parent of a child on the spectrum. As their initial draft went through various revisions, researchers knowledgeable in specific areas, such as survey development or psychiatry, were asked to review and critique it. At the same time, volunteer parents of children with ASD participating in IAN were invited to review the questionnaire, providing invaluable feedback. The Parental Depression History Questionnaire was the result of true family-researcher collaboration. This process challenged and overcame the divide that often exists between researchers and parents.
Background: What is a 'Mood Disorder'?
As we continue to discuss the Parental Depression History Questionnaire and its results, it’s important to understand what a mood disorder is, and how it differs from the emotional ups and downs all people experience. In fact, the Parental Depression History Questionnaire was specifically designed to help researchers figure out how many parents had suffered from an actual mood disorder, and how many had simply felt overwhelmed by the stress of caring for a child with an ASD.
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 handbook -- 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 point to note is that a psychiatrist is trained not to 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.
Bipolar disorder, which was formerly known as manic-depression, involves going through both depressive and manic episodes. Again, according to the DSM-IV, 7 a manic episode is characterized by a distinct period of abnormally and persistently elevated, expansive, or irritable mood lasting at least 1 week (or any duration if hospitalization is necessary). During the episode, at least three of the following symptoms must have persisted (four if the mood is only irritable) and have been present to a significant degree:
- Inflated self-esteem or grandiosity.
- Decreased need for sleep (e.g. feels rested after only 3 hours sleep).
- More talkative than usual or feels pressure to keep talking.
- Flight of ideas or subjective experience that thoughts are racing.
- Distractibility (i.e. attention too easily drawn to unimportant or irrelevant external stimuli).
- Increase in goal-directed activity (either socially, at work or school, or sexually) or psychomotor agitation.
- Excessive involvement in pleasurable activities that have a high potential for painful consequences (e.g. engaging in unrestricted buying sprees, sexual indiscretions, or foolish business investments).
In brief, a manic episode is extremely and destructively "up," while a depressive episode is extremely and destructively "down." People who experience variations of either, or both, will likely be diagnosed with a mood disorder. Such disorders are associated with high mortality. According to the DSM-IV, up to 15% of individuals with severe major depressive disorder, and 10-15% of individuals with bipolar disorder, commit suicide. 8 Both types of disorder are known to run in families.
Researchers will use the IAN data on family history and mood disorders to explore many of the questions discussed above. In this report, we share some of our preliminary findings.
Please Note: These Findings Are Preliminary
The analyses presented here by the Interactive Autism Network are preliminary. They are based on information submitted via the Internet by parents of children with autism spectrum disorders (ASDs) from the United States who choose to participate. They may not generalize to the larger population of parents of children with ASDs. The data have not been peer-reviewed -- that is, undergone evaluation by researchers expert in a particular field -- or been submitted for publication. IAN views participating families as research partners, and shares such preliminary information to thank them and demonstrate the importance of their ongoing involvement.
We encourage autism researchers investigating these topics to apply for access to the IAN database. Contact firstname.lastname@example.org.
As of October 1, 2008, more than 2,700 parents had completed the Parental Depression History Questionnaire. The vast majority of these were mothers; more than 2,500 mothers registered in IAN completed the forms, while fewer than 200 fathers did so.
We thank each and every person who completed the questionnaire. If you have not yet done so, it's not too late! We would be grateful if you would complete the questionnaire at www.IANresearch.org. You can see that we especially need fathers to participate. Because the questionnaire includes questions on family stress, it is important for all parents to participate whether or not they have had any history of depression.
Parents reported whether they had ever been diagnosed by a professional with a major mood disorder, and whether it was a depressive or bipolar illness. They also told us whether they had been treated for a mood disorder. In addition, those who had never received a professional diagnosis were able to tell us whether they had ever self-diagnosed. (See Table 1.)
|Mood Disorder Category||Description|
|Depression||Was professionally diagnosed with a depressive illness (but not bipolar disorder).|
|Bipolar Disorder||Was professionally diagnosed with bipolar disorder. (If also diagnosed with depression at some point, he or she was still counted as bipolar. Depression is often a component of this illness formerly know as manic-depression.)|
|Self-Diagnosed||Never received a professional diagnosis of depression or bipolar disorder, but felt he or she had one or the other based on internet checklists, brochures in the doctor’s office, descriptions in medication advertisements on TV or in magazines, etc.|
|Treated Only||Neither professionally nor self-diagnosed with a mood disorder, but did receive treatment. (For example, a physician may have given the person antidepressants without actually diagnosing them.)|
The data show that 37% of mothers responding to the survey had had a history of depression and 7% - a history of bipolar disorder. (See Figure 1.) This is striking when compared with an estimated lifetime prevalence in the U.S. population for major depressive disorder of 16.2% and for bipolar disorder of 1.0 to 2.1%. 9
As discussed in Table 1, however, quite a few of those who had not received a diagnosis from a medical or mental health professional reported having a history of depressive symptoms. About 10% of mothers said they had diagnosed themselves using information from diagnostic checklists on the internet, in brochures at the doctor's office, or provided in TV commercials for medications. Another 10% said they had been treated for depression without ever receiving a diagnosis from a professional or diagnosing themselves. (For a variety of reasons, a physician may treat a patient with antidepressant medication without making a formal diagnosis.)
Only 36% of mothers reported that they had never been diagnosed, self-diagnosed, or treated for a mood disorder. (See Figure 2.)
As in our earlier survey, fathers reported fewer diagnosed mood disorders than mothers, although the levels reported were still higher than those in the general population. Fully 23% reported a depression diagnosis, and 5% reported a bipolar diagnosis. The remaining 71% of fathers had never received a mood disorder diagnosis. (See Figure 3. Please note - the numbers do not add up to 100% due to rounding.) However, these data must be interpreted with caution given the limited number of fathers who participated in the survey.
Just as with mothers, there were some who had self-diagnosed (7%) and some who had been treated without ever receiving a formal diagnosis (5%). (See Figure 4.)
Clearly, a great many parents were reporting some kind of experience with a mood disorder. For this preliminary analysis, we were now interested in exploring the questions so many parents and researchers had been asking. Who had made these diagnoses? When did these mood disorders first occur? How severe were these mood disorders?
All remaining analyses will be conducted on mothers' data only; we did not have enough data on fathers to conduct a meaningful analysis. Fathers -- please finish your questionnaires! It is truly important.
Who Made the Diagnosis
Who had diagnosed these depressive or manic illnesses? The legitimacy of a diagnosis is based in part on the qualifications of the person who made it.
Of all of those who had received a diagnosis of depression, but not bipolar disorder, 44% said they had been diagnosed by a psychiatrist or psychologist, while 45% said they had been diagnosed by a general physician. (See Figure 5.)
Those with any type of bipolar illness were even more likely to be diagnosed by a psychiatrist (64%) or psychologist (18%). (See Figure 6.)
Timing of Diagnosis
When had the onset of depressive or bipolar symptoms first occurred? If it was not until after a child with ASD was born, one might tend to think that the stresses involved in parenting such a child were a precipitating factor. If the symptoms occurred before the birth of the child with ASD, it may suggest a predisposition to a mood disorder. To address this question, we asked parents when they had first experienced a mood disorder. Of those who eventually received a firm diagnosis of depressive illness (with no bipolar aspects), 64% reported that depressive symptoms occurred prior to the birth of any children as compared with 87% for parents with a reported bipolar diagnosis. (See Figure 7.)
This is very interesting, as it suggests that these may be genuine mood disorders that arose before a child with ASD arrived on the scene. Of course, the additional stressor of having a child on the spectrum was not likely to help the situation.
Severity of Mood Disorder
How severe were the mood disorders reported? Although this is difficult to determine without a structured face-to-face clinical interview, there were two ways we attempted to measure this. First of all, we asked whether a person had ever attempted to hurt him- or herself. (As you may recall, suicide occurs at a fairly high rate among individuals who are diagnosed with major depressive disorder or bipolar disorder.) Second, we asked about hospitalization. In this age of costly and hard-to-access health care, it is likely that hospitalization for a mood disorder would only occur if the situation was judged to be very serious. Results appear in Figure 8.
Considering that 20% of those with a diagnosis of depression and 51% of those with a diagnosis of bipolar disorder had attempted to hurt themselves at some point, and that 13% of those with depression and 42% of those with bipolar disorder had been hospitalized, the data suggest that some parents experienced severe episodes of mood disturbance.
The IAN data on depression history in parents of children with ASD show that a substantial number of parents have experienced a mood disorder at some point in their lives. Now researchers will use this data to explore any possible link between a family history of mood disorder and a specific type of ASD. Do children with ASD with a significant family history of mood disorder have a different profile compared with affected children from other families? What is that profile? Again, this may be an important step in identifying distinct autism subtypes.
The data will also help researchers document depression that occurs only after a child with ASD arrives on the scene, and the stresses families with a child on the spectrum face. All together, the information families have provided on depression and stress will help researchers, advocates, and policy makers address important questions in autism.
Resources: If You or Someone You Love Needs Help Due to a Mood Disorder
If you or someone you love may be suffering from a mood disorder, there are many places to turn for help, including your family doctor, mental health specialists (such as psychiatrists, psychologists, or social workers), the mental health referral process associated with your health insurance plan, community mental health centers, social service agencies, and employee assistance programs. In addition, there are a variety of other resources, including:
- The National Institute of Mental Health (NIMH) website, which provides information on depression and bipolar disorder.
- Depression and Bipolar Support Alliance (DBSA)
- National Suicide Hotline: 1-800-273-8255
(Those who are having suicidal thoughts can also call 911, go to the emergency room at their local hospital, or go to their doctor’s office.)