Autism Society records most keynote and concurrent sessions at their annual conferences. You can see and hear those recordings by purchasing full online access, or individual recordings.
This presentation will focus on the marital relationship between parents of children with ASD. It will include recent research examining marriage and separation. It will also explore the challenges faced by caregivers of children with ASD and strategies that parents can use to cope for themselves and maintain their relationship.
Prior to recent research, there had been two published qualitative descriptions of divorce rates among parents of children with ASD. Each of these descriptions suggested that the divorce rate of parents of children with ASD was either the same or lower than comparable populations (Akerly, 1984; DeMyer and Goldberg, 1983). More recently, Hartley et al. (2010) found that parents of children with ASD had an overall divorce rate of 23.5%. However, during the period of time in which the child with ASD was between 8 and 30 years old, parents of children with ASD were at an increased risk for divorce as compared to their peers with typically developing children. Despite this increased risk, divorce rates still did not reach a threshold even close to 80%. Hartley et al. was a strong study and had the benefit of being longitudinal, which allowed families to be tracked over the course of time. However, the population was not a nationally-representative sample and so additional research was indicated.
Freedman et al. (2010) examined nationally-representative data in order to identify rates of risk of separation and divorce among parents of children with ASD. Data used for this study were taken from the 2007 National Survey for Child Health (Blumberg et al., 2009). The final sample size was 77,911 and consisted of children ages 3 to 17. Statistical models were developed which controlled for potential confounding variables, including those commonly associated with divorce. This allowed this study to closely compare parents of children with ASD with other parents. Results from the analysis found no consistent evidence of an association between a child having an ASD diagnosis and that child living with both biological or adoptive parents versus a different family structure. Furthermore, children with ASD were found to live with married biological or adoptive parents at a very high rate (64%), which further defeats the notion of an 80% divorce rate.
Although many couples remain together, they still can experience incredible difficulty coping and maintaining a solid relationship. Parents still have to understand what this diagnosis means for them as an individual and parent, and often this process is quite different for a mother versus a father. Helping a spouse to cope and nurturing the couple’s relationship then requires extra energy that is often incredibly difficult to find. Many parents report that although they remain together in a legal sense, their emotional relationship is broken. Therefore, it’s critical that we utilize resources to understand families and identify new methods for helping them cope as individuals and with each other.
Building upon the background of evidence, this presentation will then discuss how parenting in general changes identity for both women and men. There is a balancing act between caring for the needs of children and putting time and effort into the maintenance and growth of the marriage or primary relationship. Frequently parents redefine values and relationships with others. This transition in the development of family life is challenged even further by a disability or chronic illness such as autism. “There is a strain on any marriage whenever a baby is sick. And we always have a sick baby” according to Josh Greenfeld, the father of a child with autism, in A Child Called Noah (1970).
The kind of chronic stress that raising a child with special needs entails can affect relationships at their weakest points. This is just as true for families who have “volunteered” by adopting children with special needs or providing a foster home. Husband and wife together dreamed of a healthy child and now face a life very different from what was imagined. Overwhelming feelings, both individually and combined, are normal and natural in the situation but very difficult nonetheless. The needs of a child with autism are often complex and illusive. Searching to find the cause of a child’s developmental problems and finding the best treatment can be a long hard journey. Getting wrapped up in the stresses and strains of everyday life, relationships inevitably suffer from lack of attention. Communication problems, lack of time and energy for personal, marital, and family activities, and social isolation affect many families. When autism is diagnosed, powerful emotions surface and may put relationships on trial. How can couples understand each other in the wake of such devastating pain and chronic stress?
For a relationship that is fragile or unstable disability can be “the last straw.” On the other hand, challenging life events can serve as catalysts for change. While some families fragment while others thrive despite their hardships. People can emerge from crisis revitalized and enriched. Hope for relationships really can spring from the crises people experience when their child has a disability.
This presentation will cover the following coping strategies based on clinical practice for couples to maintain a healthy relationship:
1. Working to understand each other’s needs. Family life can be a test of love and resilience, so working to understand each other’s wants and needs are vital to the success and survival of an intimate relationship. General male-female differences will be covered.
2. Finding alone time together. While the issues in any particular relationship are complex, having a child with ASD can make finding time to spend together extremely difficult. Couples can start with whatever they can “steal” –even if less than an hour, but hopefully more. In study after study, people who report their marriages to be satisfying describe their spouses as their best friends, and people who are best friends have activities that they enjoy together. Most people get married, in large part, because they enjoy each other and make each other feel good. Who would have married their spouse if the last time they relaxed and/or had fun together was months ago? A close bond between partners can help parents through the rough spots. Couples can start with sharing a cup of coffee or tea, dinner out, or a movie or concert.
3. Taking care of your individual selves. Children with ASD usually require lots of extra care and supervision. In the struggle to advocate for children’s needs, adult needs as individuals and as couples get lost. Many people stop focusing on their marriage, but this never helps. As hard as it may sound at first, couples will be urged to start thinking about taking care of their own needs. Adding some fun and enjoyment into life may take time to accomplish. This can be anything from physical exercise or journaling to just grabbing time to read the newspaper or a good book.
4. Reach out for support. When possible, sharing the responsibilities at home by working together on chores, childcare, and education can be good for a relationship. It is helpful when couples both work to learn about their child’s disability, prepare for and attend IEP meetings, etc. Get involved in the autism community if at all possible. There’s so much to manage everyday that reaching out to your partner, relatives or friends can help lessen the burden.
5. Communicate more effectively. When a person is in pain he or she may withdraw, or become frustrated and angry. It’s hard to talk about something one is powerless to change or fix. At times the reactions of couples can become polarized or opposite. For example, one may notice problems in the child and tend to worry and feel negative while the other holds hope and optimism that in time everything will be fine. In general, the way out requires working through the painful feelings with one’s partner and arriving at some form of joint acceptance and effective co-parenting strategies.
6. When to seek assistance. Sometimes a mental health professional (a social worker, psychologist, or psychiatrist) can be helpful to you in understanding the needs of the children, yourself, and your marriage. Some people are reluctant to take this step, but when it becomes hard to function from day to day, this kind of help may be in order. Just as a child with ASD may need to see various specialists, a marriage may need the same kind of professional attention. If both don’t agree, then one can start. Sometimes a change in one partner changes the chemistry of the situation for the better. It is intelligent and wise to acknowledge the parents’ needs by finding time and making time to nurture their partnership. Children with autism need positive parents who enjoy life to help them grow to their fullest.
Content Area: Life with Autism
Brian Freedman, Ph.D.
Clinical Director and Psychologist
Kennedy Krieger Institute Center for Autism and Related Disorders
Robert A. Naseef, Ph.D.