Learning to Love

Why is it that parents of children with autism are expected to have problems, separate, and divorce?  While recently watching the film Language Arts, written, and directed by Cornelia Duryee, I was struck by how the parents of a nonspeaking child with autism were portrayed as having a troubled relationship.

I recall the first time a case manager from the Department of Disabilities came for a home visit to “help.”  She came because I was desperate.  We had just moved from Tokyo to Seattle.  I was new to parenting and my environment.  She came on a day when I was dysregulated.  My husband was working out of state for months at a time.   I was living isolated with a one-year-old neurotypical child and a three-year-old, recently diagnosed, nonspeaking child with autism.  Our nonspeaking child did not sleep.  Our nonspeaking child pulled the one-year-olds hair.  Our nonspeaking child had no way to reliably communicate.  This being the situation, when the case manager arrived, I was at my wits end.  She asked the standard barrage of questions and tallied my answers into a computer and then said, “Well, is there any chance you can get a divorce?  You’ll get more state support if you aren’t married.”  I was stunned.  Here I was a struggling parent with two children and her “help” was to advise me to divorce.” 

As I sat and watched the dynamics of the parent relationship portrayed in Language Arts a thought came to mind, “Why is it that couples with children on the autism spectrum are expected to have a hard time?” When I did a Google search asking what percentage of parents with a child on the autism spectrum divorce, I found reports that range from 60% to 80% of married couples with a child on the autism spectrum divorce.  Is this true?  I have no way to judge if any of these reports are accurate.  What I know is that many people believe that parenting a child with autism is hard and destructive to marriages.  I wonder why this belief continues.

Granted, parenting is challenging, and navigating the various systems that are supposedly designed to “help” families with their children is complex.  However, does this cause divorce and conflict?  I do not believe that it is the children or the system that cause anyone to have conflicts and divorce.  I believe it is the communication patterns and expectations within the couple relationship that “cause” the conflicts.  Children and the system are just the stimulus that blow up the dysfunction that is present in the relationship.  Barry Neil Kaufman, author and founder of the Autism Treatment Center of America once said, “Happy people get what they want and want what they get”.  I knew I wanted to be a parent and once I began loving what I got, I was much happier in my marriage and family.  After committing to loving what I got, I came to believe that it is not couples that fail but rather the individuals in the relationship who fail to create happiness with what they have. 

I did not always have these beliefs.  When our nonspeaking child with autism was eleven years old he became more injurious to himself and to those around him, especially while at school.  At the time he was almost 6 feet tall and promising to get bigger and stronger.  My husband and I realized that school was not working for him.  One definition of insanity is to keep doing the same thing and expecting different results.  We kept having individualized education program (IEP) meetings, functional behavior assessments, and the whole gamut of “professionals’ ‘ at various meetings but no one was changing their behavior to help our son.  

As a team, my husband and I decided we wanted to do something different, so we enrolled in the Start-Up Course through the Autism Treatment Center of America in Sheffield, Massachusetts.  It was through this program that we realized that we have a choice about how we see our nonspeaking child with autism and our lives.  We can choose to believe that it is terrible and awful that our child is nonspeaking and has autism or we can choose something different.  Not only do we have a choice about how we see our son, but we also have a choice about how we see each other.  I realized that I could focus on what I love and appreciate about my husband and in doing so strengthen our relationship.  I realized that what I focus on I make bigger.  For example,  when my husband leaves his dirty socks on the floor, instead of focusing on the socks, I focus on how wonderful it is that he got the rest of his dirty clothes into the laundry bin.

When we presume competence in our children, we set about the expectation that they can be successful.  When we presume happiness in our relationships, we set the expectation that we can work together to solve any issue that comes our way.  Self-fulfilling prophecies are powerful.  I recommend creating beliefs that support you and your family.  Let’s change the narrative about parenting nonspeaking children with autism so that the next film that arrives on our doorstep about autism offers parents the possibility of thriving in their relationship while parenting any child.

Loving first, laughing more and always learning fuels Kari Nyland as a partner, parent, S2C Practitioner, CRP for Spellers and Allies and Northwest enthusiast.

Resources:

Number, Timing and Duration of Marriages and Divorces (census.gov)

FastStats – Marriage and Divorce (cdc.gov)

Easterseals | Living with Autism Study

Parental Burden and its Correlates in Families of Children with Autism Spectrum Disorder: A Multicentre Study with Two Comparison Groups (nih.gov)

Dealing with stress and intervention models in families with children with autism spectrum disorder | Humanities and Social Sciences Communications (nature.com)

https://autismtreatmentcenter.org/

Happiness is a Choice, Barry Neil Kaufman, 1993, ISBN-13978-0449907993