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IAN Report: Parent Report of Depression

September 25, 2008


In a recent IAN survey, parents of children with autism spectrum disorders (ASD) reported high levels of depressive symptoms. In an attempt to better understand the onset and time course of these symptoms, IAN staff developed their own Parental Depression History Questionnaire that was made available to all IAN participants. The preliminary data show that 44% of mothers and 30% of fathers who responded to this survey reported having been professionally diagnosed with either depression or bipolar disorder at some point in their lives. In more than 50% of such 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 services.


Background: What is a “Mood Disorder”?

Everyone feels down now and then, and with all the stress they are under 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 which can include physical aspects, like 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. A manic episode is a distinct period of abnormally elevated, expansive, or irritable mood which can include inflated self-esteem, decreased need for sleep, racing thoughts, and excessive involvement in uninhibited activities (such as unrestricted buying sprees or foolish business investments).

Mood disorders are associated with high mortality. Up to 15% of individuals with severe major depressive disorder, and 10-15% of individuals with bipolar disorder, commit suicide. Both types of disorder are known to run in families.1


Preliminary Findings: Parental Depression History

As of September 9, 2008, over 2,500 parents had completed the Parental Depression History Questionnaire, a survey developed by the IAN staff, researchers expert in a variety of fields, and parent-volunteers, to better understand the prevalence of depressive symptoms in parents of children with ASD. The respondents included over 2300 mothers and 200 fathers registered in IAN.

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 autism spectrum disorders. 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

researchteam@ianproject.org.

Parents reported whether they had ever been diagnosed by a professional with a major mood disorder, specifically a major depressive disorder or bipolar disorder. They also reported whether they had ever received treatment for a mood disorder. In addition, those who had never received a professional diagnosis were able to report whether they had ever self-diagnosed. (See Table 1.)

Table 1. Mood Disorder Categories Used in Analysis

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 him or her.)

Of those parents who had received a professional diagnosis of depression or bipolar disorder, the data show that 37% of mothers indicated that they 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 population for major depressive disorder of 16.2% and for bipolar disorder of 1.0-2.1%.2

Figure 1.

In addition, as discussed in Table 1, 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.)

Figure 2.

As in our earlier survey, fathers reported fewer diagnosed mood disorders than mothers, with 24% reporting a depression diagnosis, and 5% reporting a bipolar diagnosis. The remaining 70% of fathers had never received a mood disorder diagnosis. (See Figure 3.) However, these data must be interpreted with caution given the limited number of fathers who participated in the survey.

Figure 3.

Just as with mothers, however, there were some who had self-diagnosed (8%) and some who had been treated without ever receiving a formal diagnosis (5%). (See Figure 4.)

Figure 4.

Given the increased prevalence of parents with a reported mood disorder in this sample, we were interested in identifying the professionals making these diagnoses and understanding whether the mood disordered symptoms started before or after the birth of a child with ASD and to what degree.
.
All remaining analyses were conducted on mothers' data only; we did not have enough data on fathers to conduct a meaningful analysis. Fathers participating in IAN – 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 the mothers who had received a professional 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.)

Figure 5.

Those with any type of bipolar illness were even more likely to be diagnosed by a psychiatrist (63%) or psychologist (19%). (See Figure 6.)

Figure 6.

Who Diagnosed Bipolar?


Timing of Diagnosis

When was the onset of depressive symptoms? 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 an ASD, it may suggest a predisposition to a mood disorder. To address this question, parents were asked whether they had experienced the depressive episode before the birth of their child with ASD.

Of those who eventually received a firm diagnosis of depressive illness (with no bipolar aspects), 65% reported that the depressive symptoms occurred prior to the birth of the child with ASD as compared with 87% for parents with a reported bipolar diagnosis (See Figure 7.)

Figure 7.

These data may suggest that the depressive or manic symptoms may have occurred before the family had any children. The additional stressor of having a child with a disability could only exacerbate the situation.


Severity of Mood Disorder

How severe were the mood disorders reported? Although this is a difficult construct to measure without a structured clinical interview, there were two ways we attempted to measure this. First, 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 a mood 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 were judged to be very serious. Results appear in Figure 8.

Figure 8.

Considering that 20% of those with a diagnosis of depression and 51% of those with a diagnosis of bipolar disorder had engaged in self injurious behaviors at some point, and that 13% of those with depression and 41% of those with bipolar disorder had been hospitalized, the data suggest that some parents experienced some severe episodes of mood disturbances.


The Importance of Learning about Mood Disorders in Families of Children with ASD

Why is learning about mood disorders in families of children with ASD important? First, if a large number of parents of children with ASDs suffer from mood disorders, health care providers and other professionals should be ready with information and referrals so that parents can get assistance if they need it.

Furthermore, known causes of autism, such as fragile X syndrome, account for only a small percentage of cases.3,4 It is strongly suspected that there are different kinds of autism, potentially with different causes and different profiles, not to mention different ideal treatments. If we are mixing subtypes in all of our studies, like mixing apples and oranges, it may be frustrating our search for answers. It has been proposed that a certain subtype of autism may be associated with a family history of mood disorders.5,6,7 If so, it would be an important step towards unlocking autism subtypes.


To Share Your Thoughts About These Findings…


If you have comments and insights about these preliminary findings, please share them in the research-focused IAN Community Discussion Forum. Your feedback may influence future research.

(Any member of the public may view these discussions, but to post, you must join IAN Community. Go to www.iancommunity.org and click “Join IAN.”)


What Is IAN?

The Interactive Autism Network is the nation's largest online autism research project. Its mission is to accelerate the pace of autism research. Families affected by autism answer questionnaires over the Internet, from the comfort of home. Researchers apply to IAN to use the resulting data, or to find participants for their local studies. The IAN Community (www.iancommunity.org), meanwhile, provides evidence-based basic information on autism spectrum disorders, articles by leading researchers in the field, and reports on IAN's latest findings.

To learn more about the IAN Project, please go to www.ianproject.org.
To join IAN Research, please go to www.ianresearch.org.


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 online resources, including:



References

1. American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (DSM-IV-TR) (4th ed., text revision ed.). Washington, DC: American Psychiatric Association.
2. Kessler, R. C., Merikangas, K. R., & Wang, P. S. (2007). Prevalence, comorbidity, and service utilization for mood disorders in the United States at the beginning of the twenty-first century. Annual review of clinical psychology, 3, 137-158.
3. Volkmar, F. R., Wiesner, L. A., & Westphal, A. (2006). Healthcare issues for children on the autism spectrum.Current opinion in psychiatry, 19(4), 361-366.
4. Hagerman, R. J. (2006). Lessons from fragile X regarding neurobiology, autism, and neurodegeneration. Journal of developmental and behavioral pediatrics : JDBP, 27(1), 63-74.
5. Cohen, I. L., & Tsiouris, J. A. (2006). Maternal recurrent mood disorders and high-functioning autism. Journal of Autism and Developmental Disorders, 36(8), 1077-1088.
6. DeLong, R. (2004). Autism and familial major mood disorder: Are they related? The Journal of neuropsychiatry and clinical neurosciences, 16(2), 199-213.
7. Mazefsky, C. A., Folstein, S., & Lainhart, J. E. (2008). Overrepresentation of mood and anxiety disorders in adults with autism and their first-degree relatives: What does it mean? Autism Research, 1(1), 193-197.