Autism Researchers Concerned that the Tragedy of the Girl with Autism in Louisiana, May be a Glimpse of the Second Crisis of Care to Come

Newsweek ran an article in 2012 entitled, “An epidemic of special needs kids heads for a crisis of care”. In the story, author Michelle Cottle described that we currently have a crisis of care, particularly for those with autism, as kids age out of the school system. As the population continues to grow, with no end in sight, our health-care, education, and social services systems have a heavy burden and strain put on them that we are NOT prepared for.

But that was in 2012 and the second crisis in care is just starting to reveal itself; what will happen to autistic kids when their caregiver parents die. This crisis may potentially be even worse than the first.

Recently, a 22-year-old girl with autism in Louisiana ended up living with distant relatives when her mother died. And the article reports, “Sadly, these distant relatives kept her locked in a cage outside for as long as nine months. She was abused and lost about 60 pounds during her ordeal, which ended June 30, 2016, when sheriff’s deputies freed her from her captors. After being evaluated at a local hospital, she was placed in the care of the Louisiana Health Department.”

It is a constantly voiced concern on the part of parents of children with autism– who will care for you once I’m gone? While the logical and likely person would be a sibling, what if there isn’t one? Or what if that sibling is unable? Mild cases of autism require quite a bit of supervision/caretaking but the severe cases are exhausting and trying for even the most devoted and resilient parents.

But it’s not just caregiving, it’s financial support as well. The issue needs to be dealt with now as the CDC doesn’t plan to stop creating children with autism; by the year 2025 it is estimated that half of all children will have autism.

More from the article:

“It is oftentimes assumed that when the State takes over care for someone diagnosed with autism that there is residential placement readily available and capable of meeting the necessary demands of the individual. Unfortunately, all too often, there is no space available at state mental facilities. The size of state mental facilities in many cases has always been inadequate to meet the full demands of previous generations of mentally handicapped individuals, but the autism epidemic observed in the last several decades was never anticipated by these facilities.”

And worse yet, these care homes weren’t designed to care for individuals diagnosed with autism. Consequently, “many facilities are ill-prepared to the massive challenges of 24 hour-a-day, 7 day-a-week care and attention required for many diagnosed with autism.” Many people who are diagnosed with autism don’t have one single problem, but rather a host of issues all at the same time, including diarrhea/constipation, wetting/soiling themselves, sleep problems, eating disorders, hyperactivity, lethargy, sensory processing problems, anxiety/fear, behavioral problems, and obsessive-compulsive behaviors- all of which can be severe and even life-threatening.