I don’t know about you, but few people who exist in my sphere have this kind of money. Even those who have been working and saving for years come up way short. So if someone told you that you needed $1.4 million dollars — or access to it, what would you say? And what if you had no option because this was the amount of money it would take to raise your autistic child over his or her lifetime? Suddenly this number rings at a deafening pitch.
Numbers, particularly those that few of us have ever had looking back at us from our check register, are hard to grasp but let’s take a quick look anyway — $1.4 million if the child does not have an intellectual disability; take it to $2.3 million if he or she does. This is according to preliminary research released in March by AutismSpeaks, which added one other mind-numbing number — that the annual costs of autism are — wait for it — $126 billion. That’s a big number.
But how about this? Research released today takes these numbers and converts them into words … words that many people may be able to more easily understand…and act upon. The costs to parents who are raising a child with autism are *higher* than for parents raising a child with diabetes. Diabetes. One of the key health concerns facing children and adults today. An issue grabbing the attention of doctors, dieticians, educators, and policy makers. And a focus of most workplace health initiatives and health fairs. Everyone wants to reduce the number of children and adults struggling with diabetes. The volume is definitely growing louder and people are starting to take notice and mobilize.
Take notice. Precisely what’s needed in order for employers to recognize that while diabetes is a major issue, so too is autism. The financial, family, and health toll it takes on working parents to raise a 5-year-old with autism or a 12-year-old with Asperger’s Syndrome is enormous. Even taking the workplace issues of productivity and absenteeism off the table for a minute, the amount of money, time, and resources needed to help their children with autism reach their capabilities brings working parents to bankruptcy. Forces families to forgo vacations. Makes second cars a non-option. Requires more than the occasional holiday visit with grandparents. And forces many to leave the workforce even with these out-of-orbit costs.
While today’s news did not come as a shock, it did raise the need — okay, my need — to continue to increase the volume about the toll autism takes on working parents. I was talking to someone earlier today about employers providing pet insurance to employees — a great “perk” for sure. Yet I said that providing supports to working parents who are raising children with autism is not a perk — it’s a necessity. Isn’t the work-life discussion one that revolves around bringing some sanity and balance to otherwise out-of-control life situations?
Few people today are not touched by autism in some way. This translates into working parents — many boomers also caring for aging parents — feeling a level of pressure and responsibility unmatched by many. The needs continue to emerge yet the resources and supports are difficult if not impossible to access. Employers play a pivotal role in this equation and it starts by telling these employees, “We get it”, just as they do in supporting a range of other issues also impacting their workforce. But there’s one difference. Parenting a child with autism directly affects more than the employee alone…it affects the child and the family unit as well. Talk about stress.
Next time you hear something about autism — and the media is all over the issue — stop for a minute and think, “So what would I do if someone told me it would take $1.4 million to raise my child into adulthood.” You’d be doing what millions of other parents are already doing — struggling and hoping someone will listen and help.