Monday, August 16, 2010

A Single Mom's View of Autism Divorce Rates

Estée Klar
www.esteeklar.com

I have always found the idea of blaming the autistic child for the deterioration of marriage unfair to autistic people. Yet, when my own marriage ended, I couldn’t help but wonder if any of those ideas behind the eighty per-cent divorce rates and autism might in some way be true.

A single mom of an autistic child for several years now, I’ve seen that when relationships fall apart, we begin by looking outside ourselves for the external causes to blame. No matter what the circumstance, illness, disability, death are the certainties of a full life. We make vows for better or for worse, even if most of us want the "better." Frequent divorce seems to reflect the advent of the re-start button -- an impatient, quickly gratified culture with many options at our fingertips, and a waning attention span. It's perhaps an unforgiving view about what as I see as the marriage du jour -- the one that bypasses commitment. Even so, two people who come together with the best of intentions (or delusions), sometimes cannot endure the stress when faced with life's many challenges. This has nothing to do with autism.

Consider some of our flippant views about marriage and commitment against the last decade of autism in the media. The media and many in the medical field created an environment of fascination and fear about autism. Most parents relate to the panic we felt on the day of the official autism diagnosis. We heard and read that we had a six year window in which to cure our children. That is, we were told that if our children didn't talk and lose those autism behaviors by the age of six, our children were doomed to be autistic for the rest of their lives. With such pressure, as individuals and couples, we can be extremely challenged. Coping with stress and even grief is different for all people. Press restart?

It shouldn't come as a surprise, then, that autism is frequently blamed by some autism charities, and in the media, for divorce. When we blame something else other than ourselves, such as perpetuating the notion that autism is to blame, the innocent autistic child is targeted. This creates reasons to research autism in order to eradicate it. As a result, it is one more reason added to an exhaustive list of why we must cure and change the autistic child as quickly as possible. Instead of considering that all children are a test -- that in fact, all of life is one big test -- we yet again blame the autism.

In comparison to other disabilities like dyslexia, Down syndrome and deafness, public policy makers and educators still struggle to understand autism. We are just beginning to learn about the accommodations autistic people need in order to contribute as autistic people (as opposed to having to change in order to become normal for normal's sake -- this no longer happens with many other of the disabilities). There is more stress when parents have to fight to get kids into schools, obtain financial support, acquire respite help, augmentative communication devices, and social skills. In later years, we seek appropriate housing accommodations, vocational training, access to community colleges and universities with aides, and supports that allow our adult children to continue to learn and contribute. The list is longer for some families dealing with medical issues or extreme behavioral issues. By default, we’ve become activists and advocates by no choice of our own.

It can be an exhausting introduction -- in the first few years following a diagnosis -- for the support, guidance, and understanding is scarce. Autism still requires a lot of reading, research, funding, management, and self-enquiry. As life evolves and our children mature, we move beyond that “crisis” phase. We have read and learned, and we learn to love and accept our children as they are. We even learn to accept the prejudice and discrimination that becomes a part of our children's lives and we feel and live with it too. We work tediously and patiently, hoping that attitudes will change, services will become better and our children will be included in all facets of society.

We hope that our partners will continue the journey along with us. I say this because it's fairly typical that there is one parent doing more of the advocacy, work, and research than the other as part of the division of labor. This of course is not always the case, but for the sake of argument and statistics, it is usually the mother who takes on the bulk of such work.

Mothers are especially blamed because it is expected that we are supposed to be better caregivers. “If only the child was 'normal,' then the mother would be able to attend to her husband more often," is but one of the comments I heard during my separation -- speeding me through a time warp to 1950. Blaming the mother for the failed marriage is an old idea -- we’re either as cold-as-ice Bettelheim-Refrigerator-Mothers, or we are terrible wives.

If the learning curve about autism is not shared, the divide can start here. Or it can start when the child doesn't run up to daddy when he walks through the door at the end of the day. The mother feels guilty that she has done something wrong. Maybe dad feels rejected. Is this the cause for divorce? Or is it that the spouses already do not have an effective communication and commitment in place? Is one partner less committed to the marriage to begin with? Maybe someone read that autism causes divorce and the message deteriorates the confidence and strength we actually need in our relationships? These are but some of the questions that need to be asked prior to assuming that autism is the reason for higher divorce rates.

I've spoken to some single moms of more than one autistic child. I know it doesn't have to do with the cause of divorce, but becoming single sure follows it. Single parenting of autistic children is a topic that needs a lot of discussion, according to my Facebook  and blog readers. The single mothers I've spoken with claim that all their time is dedicated to autism -- from management to finding subsidy, services, respite and dealing with the schools. There are single mothers struggling and in need. I suggest that these are the caregivers who should be at the top of the list for such financial and respite support -- not only do children need it, but parents do as well. This of course also applies to single dads. When single, extra time is committed in order to accomplish the tasks that were once shared. Lack of understanding and support, unlike other disabilities, does effect the shape and nature of our lives. It doesn't necessarily make it worse. It can, in fact, make it richer, even if it's challenging.

It's ironic that, having seen so many women of typical children get caught up in their motherhood roles, that mothers of autistic children get blamed for failed marriages because we get so involved in our “autistic” children’s lives. In the beginning when I wrote reams about autism on my blog, I was criticized for being too involved one moment, only to receive another message from another source that I needed to do more for my autistic son.

Children have been vulnerable targets for generations. Add the stigma around autism and disability, and the autistic child is spotlighted in this divorce speculation. Instead of studying the ingredients of successful marriages and families with autistic people in them such as attitude, family communication, compatibility, the purported correlation between higher divorce rates in autistic families simply bypasses these considerations.

A 2010 study debunks the incorrect 80 percent divorce rate and some of the assumptions that accompany that myth. Dr. Bruce Freedman of the Kennedy Krieger Institute found that a child’s autism “had no effect on the family structure.” In fact, he found that 64 percent of children with autism belong to a family with two married biological or adoptive parents compared to 65 per cent of children who do not have ASD. Freedman’s study acknowledges that parenting an autistic child may be more stressful and it may put pressure on the marriage, which he found in past studies.

Yet, Freedman's team's analysis of a 2007 National Survey of Children’s Health data showed that other factors can contribute to divorce, “such as having a child with particularly challenging behaviors with and without autism [emphasis mine]. For some families, the challenges of parenting a child with special needs may indeed result in straining the marriage to the breaking point.”

Freedman wishes to conduct more longitudinal studies to find out how relationships can survive such stressors and what factors may enable the successful marriage. Alison Singer, founder of The Autism Science Foundation, agrees that it would be helpful to find the “net stress reducers,” for families, noting also that the 80 percent divorce rate myth may have added to our stress as parents and marriage partners.

It might help to add here that Canadian researcher Lonnie Zwaigenbaum in his paper A Qualitative Investigation of Changes in the Belief Systems of Families of Children With Autism or Down Syndrome (Child: Care, Health and Development, 2006,32: 353-369) concluded that families with autistic and Down syndrome children resulted in a reconstruction of values, expectations, and actually added to a sense of overall happiness and joy. His team noted that most families believed that their children added to their quality of life in that the way in which they regarded their lives were improved. I will concur. Having an autistic child, even with the challenges, has made me more patient and appreciative. My son Adam has been the most profound teacher in helping me see not only the realities of life, but in living with them to the best possible degree. While I was married he brought me joy. When I became separated, he reminded me, when I needed it the most, of my values, commitment and the importance of a healthy attitude.

Still, after grappling with the divorce-rate myth immediately after separation (which, by the way, made me only feel worse), I thought it really important to discover why so many people believe that families with autistic and other special needs children are more vulnerable to divorce. I also became interested in the underlying fears that may prohibit some people from believing that future relationships for autistic children are possible. Again, as I walk in the shoes, I know that parents are afraid of new potential partners being interested in a relationship where there is an autistic child. Parents believe they are not attractive as prospective partners. We also worry about whether our children will be safe and accepted. When people believe that autistic people are incapable of affection, violent (among many of the generalities), it is easy to see why there is concern.

Among some of the reasons why we believe divorce and relationships are so complicated is because we believe we suffer more because we perceive that we devote much more time to the autistic child than the neurotypical child. We forget to consider the issues belonging to typical children that can also strain marriages. In my current relationship, I overheard my partner claiming how much more delightful my son is compared to some of the typical children he's encountered. The reality is, children are children and the outcome of them all is uncertain.

Yes, autistic children, and their parents, need more support in a world that doesn’t value them as they are. I also see this changing. I see more acceptance as the years pass. I have more understanding and patience for others who have not been in this as long as I have, and that really does make things a little easier. A change in attitude has effected a lot of positivity in our lives. I've always viewed my son Adam as a joy in my life and I've seen him become a joy in the lives of others. The time I devote to him is worth it.

Overall, though, divorce is not easy, whether you have an autistic child or not. Though my life has taken more turns than I expected, I have learned to accept them and to make a life for Adam and myself that fits us. We must fashion our uncommon arrangements, whatever they may be, and forget the traditions, systems, and beliefs that can influence the way we function and even make us sick. We must create our own ways through life to find contentment.

If you want to be married or in any kind of committed arrangement, and you have autistic children, perhaps my best piece of advice is to just stop listening to the messages about how hard life is with autistic children, or how you are supposed to be married or be a family in the first place. Don't let anyone tell you how to be a family or that your autistic child must be normal to be valued. If you have remained together, lovely. Keep looking to each other, and cry, laugh, and grow together.

I hope you continue to live … happily ever after.

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A version of this essay was originally published at www.esteeklar.com.