ASA's 37th National Conference on Autism Spectrum Disorders (July 13-15, 2006)
|Saturday, July 15, 2006: 8:15 AM-9:30 AM|
|#1940- The Autistic Family Life Cycle: Family Stress and Divorce|
|Although it has been reported that the divorce rate in families with an autistic child is in the 80% range, there does not appear to be much written about this phenomenon. Based on experience from a child psychiatric practice specializing in autism spectrum disorders, the author will discuss some of the aspects of the apparent causes of this extremely high divorce rate in hopes of finding ways to lessen the impact on both parents and children.|
|Presenter:||- Dr. William Bolman is a child psychiatrist specializing in Autism Spectrum Disorders. Dr. Bolman helped to found the Autism Society of Hawaii in 1992. In addition to teaching and lecturing, Dr. Bolman has served as consultant for the National Institute for Mental Health and the World Health Organization. In this capacity he has given presentations on autism spectrum disorders in Japan, China, Malaysia, Indonesia and Thailand.|
ABSTRACT The idea for this presentation grew out of unmet needs encountered in my clinical practice. At the beginning my focus was entirely on trying to understand the unusual sensory and behavioral challenges that autistic children present. However, with time and experience I found myself spending more and more time with family issues. How to get a thorough workup, how to get services, how to deal with the school's lack of trained teachers and money, what problem behaviors suggest improvement and which don't. etc. There were so many demanding issues to deal with that inevitably normal family structure and balance became focused around the needs of the child with autism. Thus, marital relationship time disappeared and with it went the sharing, mutuality, and working out of joint issues that promote marital survival. In the absence of this essential aspect of two people sharing a life and creating a joint future, parents found themselves falling back on traditional role responsibilities. Dads went to work and earned money while moms stayed at home and tried to become experts on autism! The inevitable result was that of growing apart, not together. So I found myself becoming a therapist to depressed mothers. Although I noted and missed the relative absence of fathers, I didn't understand the significance of their absence. Like everyone else, I assumed that this was inevitable and continued my primary focus on the child.
This approach seemed to work for a number of years. However, sometime around age five to ten years the marital deficits and inadequacy of the traditional roles began to show evidence of strain and even open dissatisfaction. Dads became frustrated at the demands of their wives to “play with” a son or daughter who didn't know how to play, and moms became frustrated at the lack of involvement of their mates. In retrospect, this appears to be the time that the existing intra-marital separation starts the couples on a path towards formal separation and divorce.
If we are to deal in a proactive and hopefully preventive way with divorce as an outgrowth of parental stresses we need to start from the beginning. As we go through a simplified review of the sources of stress that challenge marital ties, I'd like you to consider whether there are things that helping professionals – physicians, early intervention specialists, teachers, autism chapters – could do to identify and support positive adaptation.
Stresses start in infancy with a child whose social development and ability to communicate are impaired. From here the parents start on a marathon of stressful experience that begins with difficulties over diagnosis and continues without remission through the child's adulthood. Along the way the parent's need to deal with unique behavioral challenges, major differences over therapeutics, inadequate responses of many helping professionals and school systems, problems with health coverage, financial stress and growing anguish over the child's troubled future. Specifically, it is my experience suggests that the increased frequency of divorce among autism spectrum parents is not a function of the parents or their functioning, but rather is due to known stresses that cause strain and eventual splintering that may be preventable. In order to organize the issues I will divide this discussion of stresses into 3 stages. Obviously this is artificial but it may help clarity.
Stage 1: Getting a diagnosis. Marital stresses most commonly start in infancy or early childhood, and arise because the child shows problems in development. The central issue is diagnosis – how to get an accurate diagnosis at the earliest possible time so that early intervention services can be started. The relative newness of the autism spectrum disorders poses special problems. Family physicians and pediatricians face a condition that was once very rare; hence they are reluctant to make a diagnosis and suggest that the child be “followed”. The result is that the average age of a diagnosis of autism is currently around 5 years, and for Asperger's syndrome is 13 years, both well past ideal timing.
Returning for a minute to the issue of family physicians, pediatricians and psychiatrists – I think that like many other societal institutions, medical education is trying to provide more information on autism spectrum disorders. It is dealt with as a specific topic of importance and the need for behavioral intervention is becoming known. However, it needs to be remembered that the autism ‘epidemic' is only 15 to 20 years old, which means that most physicians will not have had specific training unless they got it by way of post doctorate training. Thus it's important to ask your physician and hopefully find one with training in developmental pediatrics. This is a new specialty in pediatrics and the trainees are excellent. In addition there is a new type of pediatric specialist being trained in some medical centers – these are young men and women who have an extended period of residency training that makes them eligible for board certification in pediatrics, psychiatry and child psychiatry – “triple board” pediatricians. From my perspective this is an outstanding development in terms of holistic/ comprehensive care. One gap in medical-dental training that persists is that we still do not have very many dentists who are able to work effectively with the incredible challenges that autistic children present when they need dental care.
After the stress of finding an autism-knowledgeable physician to take care of the physical needs of the child, the next is - given a diagnosis, what caused the autism? Inevitably, parents try to find out possible causes. A common pattern among mothers is to wonder what they did wrong – drinking, smoking, exercising, working. In some families the in-laws even agree wholeheartedly, a belief that becomes terrible if the couple should split up and custody is disputed.
Stage 2: Getting services. I don't need to tell any of you how difficult and complex this stage is. There is so much information and misinformation and such shortage of truly knowledgeable professionals compared with the number of those who claim knowledge. So, the chasm between what we need to know and what we actually know is a major characteristic of this second stage – how do parents find guidance? The best way to see the unbelievable choices is to go into the Internet and type in Autism. My personal recommendation on how to handle this chasm is to join both the local and national chapter of the Autism Society of America and read their balanced recommendations. Unfortunately, as far as I know, at this time the ASA does not say anything about the divorce issue.
The importance of this knowledge chasm for parental relationships is that it begins to create the conditions whereby parental knowledge and involvement becomes specialized. On the whole, moms begin to become the family autism expert. Although this is a good thing, it's not an altogether good thing, since some moms go off in the direction of being “super-moms” and some dads opt out and work extra hard to support the moms and the family and the stage is set for 2 good people to head off in different life directions. There is no question that this role division is effective for a few years, but one of the things that keeps marriages together is deeply shared interests.
However, I do not think that this role division is inevitable. I know lots of dads who are excellent in doing ABA exercises. In fact dads are very helpful in working on the generalization of skills learned in school or home settings. Also, they can be helpful with getting autistic children more active, helping with structure, limit-setting and discipline, and finally they can be great with homework and reading to their children. Best yet, by sharing the horrendous workload that moms carry in treatment responsibilities, they help wives get some break time to relax, regroup and perhaps even to feel better! And it doesn't end here – dads also come in with their wives and children to appointments with me and I get a chance to hear their views, discover their particular talents and work together in problem solving. So, when it works, I'm a great fan of dads and autism. However, I know an equal number who do not come in for appointments and worse yet, do not go to IEP meetings with their wives.
What I'm driving at here is I think there is an opportunity to develop dad-oriented informational materials intended to emphasize their special importance of dads. Being involved in work with their autistic child helps the child, the mom and the marriage. So, if the family survives the first stage of autistic family stress, we come to the next stage – adolescence.
Stage 3: Dealing with adolescence. As autistic children become teenagers, at least three new issues appear – sexual development appears, tantrums become potentially dangerous as the child gets bigger and stronger, and a new set of educational issues is needed to deal with the transition from the school to community- to a world in which practical knowledge, the ability to communicate, and street skills are essential. Although moms have been handling these three issues by themselves, I think it would be a whole lot better if dads were available to help with this phase! For example, in a just world, the issue of masturbation should be handled by dads, autistic-based aggression toward moms needs much more than autism consultants and skills trainers, and the post-high school world of the community and work is one in which dad's have considerable expertise.
Stage 4: Post high school. I have to admit that I have very little experience with this phase of the autistic child's life cycle, because the majority of my patients are still children or teens. Some of the issues that need to be dealt with are: 1) Where will the child live? What kind of adult support services are needed? 2) What about guardianship? 3) What sort of day programs and vocational training is available? 4) What community interests and recreation are available? 5) With the legal responsibility of the school system out of the way, who's going to pay for continued services? Have Social Security benefits been authorized? 5) What happens as parents age? I'm sure any family who has been through these daunting issues will be able to add many more problems to the list.
Conclusions: I'm not sure how to conclude this talk, since all I've done is to say that it looks like we have an important societal problem that confronts the families of children with autism – the inadequate recognition of the importance of family intactness - spousal togetherness - to handle the multiple stresses of problem-solving, getting autism services, attending IEP's, managing the frustration overload that confronts so many families. It would seem to me that there are two major needs: First to do an epidemiologic survey to assess whether the divorce rate is indeed 80%, and collect data on the stresses that are associated. Second, we need more information on whether it is possible to provide information to families that can help prevent parental breakup. There may be chapters who have developed supportive information on this and I'd love to know about that. It would be especially important to help families know right from the beginning that they face more than autistic behavior that needs management so the husbands and wives can work together rather than specializing and splitting roles. I'd like to see if some of the medical associations like the American Academy of Pediatrics or that of Family Physicians can alert their memberships to this issue, given the hugely increased frequency of autism spectrum conditions. Also it would make sense if the ABA training programs included information on the problem. Since this is an Autism Society of America Annual Meeting it might even be possible to form a task force to look into the problem. I'd love to hear what others think about this issue and hear suggestions on how to proceed. Thanks for listening.