Spiraling Down

In these unpredictable economic times, I pondered the question, how are families with children with autism paying their bills and providing for their families? I asked families all over the country to email me to telling me their stories of surviving the economic down-turn. In no way is this article a scientific evaluation of family income or lifestyle, just an overview of what is plaguing our country.

According to the 2000 Census report more and more families rely on two incomes to stay in the middle class and what my interviews uncovered was that families with kids on the spectrum often don’t have two full–time incomes due to caring for their child. Before the age of three it is often difficult to find and retain appropriate childcare for children with autism and then after the age of three your child should receive services through your local school system, but usually not enough time for a full-time job. Along with the intensive caring and re-enforcing behavioral therapies, many parents are their child’s case manager — dealing with doctor consults, educational programs, and home therapies which results in many meetings, emails, and phone calls every month.

What I found were that parents often work split shifts, so one person can always be home with the child with autism or be able to manage the doctor’s appointments, therapists, and meetings. The financial and emotional stress can be daunting with families left unsupported. Other families live on one income trying to live from paycheck to paycheck, giving up taking the kids to movies (not to mention a night on the town) for gluten-free, casein-free bread for their child with autism or occupational therapy or medical care, all things these kiddos need to thrive. Parents that make the choice to have one parent stay-home with their child often end-up here not because they want to be a stay-at-home parent, but because there is no other option.

As a result families plunge into financial distress with their relationships following — who can really endure a child with special needs, economic uncertainty, emotional stress, and workplace demands along with maintaining a concrete marriage. The American Autism Society claims that over 80% of the families affected by autism result in divorce. Combined with the stats from the Census report that women are 50% more likely to spiral down into poverty after a divorce, this paints a bleak picture for all families. We need more funding to be allocated towards strengthening autism programs, respite care, and professional training to help the entire family not just the child.

While I read emails from parents, I often think we are, the United States, the richest country in the world, of course we can pay for special education or healthcare for all or job coaching or even appropriate daycare for all children regardless of age and abilities, we chose not to (support these programs). However, I believe we won’t get there without political will and people saying “no, our tax dollars should not be spent to make the rich richer, but help all our citizens.”