Respite Care Vital to Autism Families

During Autism Awareness Month and the other eleven months of the year, I am aware of the toll that autism takes on families.  A key to alleviating this stress is respite care.  The value of respite care is now being substantiated by researchers from Brigham Young University and Wasatch Mental Health who have conducted a study on the effects of respite care on autism families.  One hundred and one two parent households across the nation were polled who had children with autism between the ages of 1 to 33.

Parents individually answered questions about their marriage, their feelings about daily responsibilities like money and work as well as how much respite care they received during a typical week or weekend. They indicated that about 64 percent of their kids with autism spent time with a respite care provider. Grandparents were most often the ones cited in giving parents a break.  Also mentioned were babysitters, community agencies and extended family members. The results indicated that, “Just one additional hour of respite care per week was related to an increase of six to seven points in marital quality, which is approximately one half of a standard deviation. This finding offers hope to couples parenting a child with ASD.”

Adding to the evidence of respite care’s impact is a study last year in which researchers found a decreased risk for psychiatric hospitalization in kids and young adults with autism whose caregivers used respite services.

While this study addresses two parent households, single parents are even more vulnerable to the stresses of not having respite care. Many of you already know I am raising twins with autism alone. A few years ago I made a desperate search for respite care for one of my sons that included calling the governor of Washington State. Then Governor Christine Gregoire’s aide connected me to a state mental healthcare provider program.  After an odious home visit and exhaustive interview process, I was referred to a state approved agency for four hours of respite care a month.

The aide who was sent to our home had no training in autism and spoke to my child in baby talk although he was a precocious sixth grader. When he had a meltdown and threw himself on the floor kicking and screaming, she called the fire department. Adding insult to injury the aide’s supervisor phoned me afterwards and read me the riot act because my son had “kicked her employee”. I tried to explain that her employee had gotten too close to him as I’d specifically instructed her not to, but ended up hanging up instead.

At this point I’d like to issue a friendly challenge to transform “autism awareness” into action.  If you know an autism family, you know someone who could use your help. Maybe you can’t commit yourself to watching their child with autism for a whole hour. Maybe you watch them while the mom goes to the store, transforming a potential ordeal for her into a quick outing. Double your next batch of muffins and show up at their door. Give her your phone number and let her call when they need to talk.  Inquire how their child is doing. Use your imagination. Any small gesture will be a great blessing and incredibly appreciated.