Autism is a pervasive developmental disorder that affects 1-in-88 children. My son is one of them. Rocco was diagnosed with autism nearly two years ago at the age of 18-months, and we struggle every day with the communication and processing challenges that autism presents.
Autism changes everything. These are five of the more obvious ones.
Some days I think autism is contagious (it’s not) because it has a way of permeating into every part of your life, coloring every aspect of everything you do, and can make you live in an insular world of your own. Autism changes not only your child’s life forever, but also the lives of everyone who loves and cares about you and your child. Autism has a way of spreading in unseen and unexpected ways. Below are five ways autism has changed life for my family.
1) Financial — If you want to treat autism aggressively, like we have, it’s going to cost a lot of money. Probably more than you have, even if you consider yourself “wealthy” (we never did, and now we definitely aren’t). Very few biomedical treatments for autism are covered by health insurance. Private therapy is also costly, and often ends up being an out-of-pocket expense.
2) Time — Raising a young child takes a lot of time. Raising an autistic child takes ten times the amount of work. If you want your child to get better, you need to engage him every waking moment of the day. There’s no plopping your kid down in front of the TV- if you want your kid to live in this world, you have to constantly draw him out of his.
3) Exhaustion — The effort it takes to help your child recover from autism is enormous. Maintaining a special diet, preparing for doctors’ appointments, and organizing therapy schedules are just a few of the chores added to the already hectic job of childrearing. Personal hobbies and interests fall by the wayside; you’re too tired to do much of anything, even if you had the time or money.
4) Relationships — In times of crisis you find out who your true friends are. We’ve lost a few friends since our son’s diagnosis. We’ve gained a few new ones, too (and then lost a couple of them!). The same goes for family members; some have stepped up to offer help and support, others faded into the background. Having an autistic child can make you self-absorbed, irritable, depressed, and emotionally unstable, all of which put a strain on personal relationships. It takes a heavy toll on a marriage, too; it’s estimated that 80 percent of parents of autistic children get divorced or separated. My wife and I lean on each other heavily — so much so, that sometimes I fear we will crush each other. Autism has a way of revealing whether or not you’ve chosen your spouse wisely; my wife and I are both pleased with the choices we made.
5) The Future — When a baby is born, parents have high hopes their child will rise above the pack, and have a lifetime of achievement. When your child is diagnosed with autism, you suddenly strive to have your child “indistinguishable from his peers.” Just being “normal” would be a major accomplishment. Instead of looking at your toddler and wondering what college he will go to, you wonder if he’ll ever be able to live on his own, and what will happen to your child after you die.
The above examples are not presented as a cry for sympathy. I present them because autism is an epidemic.
With 1-in-88 kids diagnosed with autism, there are a lot of families out there affected by this disorder. Maybe you know someone who has an autistic child. (If not, I fear you soon will.) Chances are they’ve experienced one or more of the aforementioned life-changes. With the exception of a few rare childhood illnesses, autism is one of the most labor-intensive disabilities to contend with. And, unlike some tragic childhood ailments, you don’t know how your child’s story is going to turn out.
Given the right combination of treatments, some children make a full recovery from autism. Others are classic “non-responders.” But there are new therapies being developed every day, and even autistic adults, whom many consider “too far gone,” are benefiting from these emerging treatments.
As the parent of an autistic child, you never stop searching, never stop trying, and never stop hoping for a way to help your child. It’s an everyday struggle, a lifelong battle that parents of young children are being asked to face. Offer them whatever help you can; even a kind word makes a difference.
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