Psychology. Education. Advocacy. Research.

Tuesday, April 3, 2012

The Audacious Caregiving Demands of Autism

There is no amount of money in the world that can buy us more time.  Nor is there a holier than thou prayer that can make more time miraculously appear.  Twenty-four hours is all we get.  Parents are doing their best to balance, juggle, and manage their time demands in a way that is healthy and productive for their family.  Research reveals that parents of individuals diagnosed with autism spend an average of 6 hours a day caring for their school-aged children. That is 13 hours more, in a week, than parents of school-aged children with no disabilities.  As a mother of a school-aged child with autism, I agree with these research findings. My friends, who have children with no disabilities, are amazed at how much mothers of children with disabilities do in 24 hours (one of them told me she believed parents of children with disabilities somehow get more time in a day).
Prior to diagnosis, parental care giving demands were typical for my husband and I.  We participated in all social gatherings that were appropriate for an infant or a toddler.  We rejoiced in our daughter's numerous developmental leaps and bounds, such as her first smile, rolling over on her back, laughing, grabbing, crawling, walking...  However, our time demands during this period of our life did not center only around our daughter.  I decided to go back to school to pursue another degree while I cared for her at home.  My husband worked full-time and went to college full-time.  We were concerned about many of the same things as other families after having a baby.  And just like many other families, we kept ourselves motivated by continually looking ahead and seeing only success.  We had long, drawn out discussions on the condition of the world, our daughter's education, our business ventures, where we would eventually live, and when we would have another child.  Then came the diagnosis...

I went one way and my husband stayed steady.  From that point forward all time demands centered around our daughter.  We did not spend one more second discussing anything in relation to "the future".  Our perception of reality scrolled quickly in from the wide world of known and attainable possibilities to a vast world of inconceivable unknowns.  Our very beings became obsessively focused on our little girl.  We lost all sense of time, all sense of community, all sense of culture, and all sense of what society deemed as important.

We quickly began to understand that everything we had been taught on "how to survive in this world's system" was slowly fading away.  We were not prepared to dive into a whole other reality in relation to the world's system.  We then had to educate ourselves on a level of reality that most people in the world knew absolutely nothing about.  A reality that we knew absolutely nothing about.

There have been numerous studies conducted to gain a better understanding of the workplace demands and personal demands of an employee.  Many of those studies have focused solely on parents of children with no disabilities and their ability to create and maintain a healthy work-family balance.  The results of those studies brought about employee assistance programs (EAPs), onsite childcare, flextime work schedules, and family-centered benefits packages.  What I find interesting is the scarcity of research on these specific concerns in parents of children diagnosed with autism.  As the prevalence of autism continues to rise in our society and around the world, I believe it is imperative for us to gain more of an understanding on the effects of this particular disorder on time demands and stress levels in these particular parents.  Furthermore, we need to learn the workplace demands and personal demands of these parents and then we need to find more ways to assist them.

I hypothesize the lack of appropriate childcare as an overarching issue.  I will discuss this more in my next post.

Sawyer, M., La Greca, A., Bittman, M., Crettenden, A., Harchak, T., & Martin, J. (2010). Time demands of caring for children with autism: What are the implications for maternal mental health? Journal of Autism & Developmental Disorders, 40, 620-628.