A recent University of Pennsylvania study confirms what autism families already know – autism results in substantial underemployment and loss of income among mothers.
Healthcare costs associated with the disorder are only part of the reason. Mothers take lower paying, more flexible jobs to be available for their child. But the primary issue is that the system for caring for a child with autism is so fragmented that mothers are required to act as case managers for their children in a way that doesn’t happen with children that have other disorders. Advocating for their child’s health needs and education becomes an autism mother’s de facto, full-time job.
Among the study’s findings:
- Mothers of children with autism spectrum disorders were 5 percent less likely to have a job than the mothers of children who had other chronic health problems, and 12 percent less likely to have jobs than mothers of healthy
- Mothers of children with autism spectrum disorders earned about $6,300 less annually than mothers of kids with other health conditions and $11,540 less than mothers whose kids were healthy.
- Families with children with autism spectrum disorders earn an estimated $11,900 less a year than families with children with other chronic health problems and $17,640 less than families with healthy kids. This translates to 20 percent less than families with kids who have another chronic disease and 27 percent less than families with healthy children.
- Fathers were exempt from job and income disparity, although they tended to work more hours than dads of neurotypical children.
- Overall, The labor market costs associated with having a child with autism are more substantial than with a child with other health limitations and constitute a significant national strain.
Coupled with all this information is the reality that lack of respite care for children with autism is a crisis in our country. While it is truly horrifying and an abomination to read about mothers who take the lives of their children with autism, they can be regarded as the canary in the coal mine of our nation’s inability to give children with autism and their families the support they so desperately need.
I recall years ago hearing autism expert Dr. Tony Attwood talk about how in Australia, each child with an autism diagnosis is assigned a public health nurse to coordinate and monitor the youth’s needs and progress throughout childhood and into early adulthood. The audience stared at him blankly. He was aghast to learn that nothing comparable exists in the United States, a place so wealthy compared to other nations.
In this day-and-age of multiple wars overseas and budget hacking, the prospect of significant improvement in our country feels remote. I don’t how or when the change is going to come, only that it needs to — and soon.