#Marriage

Most people don’t understand the experience of raising an autistic child and fewer understand how the responsibility of care can affect a marriage.
A few years back I read a statistic that stated 80% of parents of autistic children get divorced.  Recently I learned that there is no real data to support that. However, experts agree that the stress of caring for an autistic child can be significant. What makes autism different is that there are enough individuals with autism who have been responsive to therapy and made great gains.  So it makes parents like us feel like we have an obligation to try and do everything in our power to help our children function better.  For some couples, the stress of this can have a negative effect on their relationships. The opposite can be true for other couples and they can actually thrive as they unite through this unique experience.
Joe and I learned early on that we had to decide how much autism we would let into our lives. That probably sounds weird, but if you know anything about autism you would know that there are many possible theories and treatments for autism popping up everyday. We would need to decide what would be best for Ashley based on many different factors (and a great deal of research!) with the most important factor always coming back to what would work for her and for our family.  Autism has caused us to face a great deal as a couple.  We have needed to become experts about our child but also about educational rights and policies, the healthcare system, early intervention, insurance laws and fighting for out of district placement. Through all of it we have relied mostly on each other.  It hasn’t always been easy, as the mom I have taken on the role of Ashley’s personal case manager.  If I’m being truthful, there were times I felt resentful for having to carry the burden of that.  What is equally true is that if and when I asked for help Joe would step up, often offering a better understanding of whatever material I was looking at or researching. He is the yin to my yang and we’ve always been able to work together to resolve issues or conflicts.
Another statistical stressor on the marriage is the cost of autism. Autism costs a family, on average $60,000 a year.  In the United States the cost of autism over an individual’s lifespan is about $2.4 million for a person with an intellectual disability, or $1.4 million for a person without intellectual disability.  Parents, like myself, must often step away from their full time career to manage their child’s therapy schedules, evaluations, school pickups and school meetings.  This often places more of a financial burden on the spouse. (Joe would probably agree although he is not one to say it out loud.)  All of these things were true for us and continue to be. I mean, let’s be honest, Ashley’s autism isn’t going away. Like many autism families, the financial concerns for ourselves and our children are very real.  I’m tempted to think that couples who already have a challenged marriage may not survive raising a child with autism.  Conversely, some couples find their bond becomes stronger because of the need to pull together and unite in the fight for their child.  The totality of Ashley’s existence is NOT her autism. She is a smart, cute, funny, beautiful young lady.  The same can be said for me and Joe as a couple.  While we are currently working hard to draw attention and assistance to this most worthy cause, but we remain (I think?) a fun and happy couple; hanging out with friends, enjoying our summer, spending time with our family and each other.  We try to find the balance and try to be careful about how much autism we let into our lives.  It’s a balancing act for sure, but we are lucky to have each other for the journey.

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