The Politics of Autism includes a discussion of parent experiences. Back in 2004, Jane Gross wrote in The New York Times: "With rare exceptions, no disability claims more parental time and energy than autism because teaching an autistic child even simple tasks is labor intensive, and managing challenging behavior requires vigilance."
There is a false narrative that people on Medicaid or SNAP (food stamps) are collecting these benefits out of choice rather than necessity. I am on Medicaid because being a caregiver to my kids makes employment a huge challenge. I can easily get a job. I cannot keep a job.
In addition to the challenges of getting through a school week, there are appointments with therapists and psychiatrists. There are IEP (individualized education plan) meetings with teachers, case managers, school psychologists, and administrators. There are phone calls from teachers, staffings and conferences. All this eats away at my employability.
Businesses value workers who are predictable in scheduling requirements. Even jobsI’ve taken under an explicit understanding of my situation have been tough to keep. It would only take a few weeks of teacher phone calls and leaving work to handle a meltdown before the disapproving looks and casual critical comments started. As much as a manager may understand my unique needs, many businesses find it hard to function without reliable employees. My situation renders me unreliable, through no fault of my own, and so I become essentially unemployable.