Respite Care Crisis for Autism Families

Underlying the horrific story out of Salt Lake City, Utah in which a thirteen year boy was shot by police when his mother called them to de-escalate her autistic son is another story — a lack of respite care for those who need it most. The mother had just returned to work after a year and her son was distraught at having been left alone. She called the police to take him to the hospital when he couldn’t calm down, but they were untrained in dealing with autism and shot him when he tried to run away. The crisis could have been averted if there were someone to stay with him while his mother was at work.

More often than not, parents are the primary caregivers for ASD children and it is an all-consuming job. Research has shown that mothers of children with autism experience chronic stress comparable to that experienced by combat soldiers. Along with the typical demands of parenting, parents of ASD children must manage their unpredictable behaviors and meltdowns against a backdrop of other family and work commitments. The complexity of the parental role and the well-being of parents caring for ASD children has increasingly become a public health issue. In lieu of clear pathways for help and support parents are often forced to go to emergency room services as an initial point of contact for respite care or in a crisis situation. The sheer number of parents who bring their ASD children to the ER points to the acute lack of services for autism families. Parents will go to exhaustive lengths to find appropriate respite care for their children, and many are still unsuccessful.

I have more than a nodding experience with these issues. One of my ASD twins had a psychiatric crisis last winter. We were in the ER and the nurse had sedated him and I started sobbing as he slept. The hospital social worker swooped me out of the room and started giving me a pep talk. She told me not to worry, my son would qualify for respite care, I could return to work, we would be alright. Sadly, she was misinformed. After making more than a dozen different calls, I was told that respite care was only for those with physical problems. My heart sank.

When he was further recovered, I enrolled my son at a community center for ASD adults 20-30 years old where they teach interesting classes, have board games sessions and lead field trips. I felt so relieved and he was eager to check it out. Then COVID-19 shut it down.

I don’t know what it will take for society to respond to the pressing needs of autism families. Perhaps cost saving moves — providing respite care is cheaper than a surfeit of emergency room visits. Or incidents like the one in Utah that drive home the fact that this is indeed a public health crisis.

With so many beleaguered parents having to home school their children indefinitely due to the virus, never has the need for respite care been more glaring.