No ‘Village’ for an Autistic Child

In an article about autism, the parents ended the piece by saying, “We worry about what will happen to our son when we’re gone. Who will take care of him?”

That’s all well and good, but as a parent of an autistic child, I worry about today. They say it takes a village to raise a child. But what’s a parent to do when the members of his own tribe aren’t very willing to embrace a child with disabilities?

To worry about who will take care of my own autistic son tomorrow is a worry to me, but I find it’s all I can to do to make room for the emotions of how people do or don’t treat him today. My relatives don’t invite us to dinner, fearing the inevitable tantrums that my son will throw. Well-intentioned cousins stopped issuing birthday party invitations after my son was born, and I fully understand. There is even one loving relation who excludes my son, only including my daughter in plans. My head tells me that her discomfort is reasonable, and I don’t want to deny my daughter’s interaction with her, but my heart aches for my son.

Finding baby-sitters is no easier task. My husband and I have managed to grab dinner and a movie now and again, as long as the baby-sitter isn’t alone with our son. When my daughter is with my son the tantrums are few because he has a familiar, loving face to connect with. Without her, we’ve gotten frantic phone calls in the middle of our appetizers, begging us to come home, the screaming in the background unmistakable.

So who will take care of our son when we’re gone? They say that when autistic males reach puberty that the escalating hormones can exacerbate their autistic behavior. I’ve read of families who worked around the clock with their autistic toddlers to “pull them from the brink of autism” (getting them to communicate, socialize, be potty-trained and have fewer tantrums), only to lose them again when they become teenagers. These are kids who are eventually medicated and institutionalized because they become unmanageable for their families. Taking care of my child today is a 24-hour job, and I can’t do it alone. There are therapists, specialists, educators and professionals working daily to help my little square peg fit into the round holes of society.

While neighborhood moms schlep to soccer, music, religious school, Little League and Scouts, we drive to speech, physical, occupational, behavioral and other therapies. I don’t for one minute consider myself to be less fortunate than those moms, but I do sometimes find myself grieving for the mom I might have been. My daughter, who doesn’t have a neurological disability, has to live with half a mom because I don’t have the time or energy. This doesn’t mean that her life isn’t full and enriched; it just means that I regret not having more to give.

As parents we all have worries and concerns for our children and their futures. We all have expectations and desires for their lives. We worry whether they will grow up into confident, independent and capable adults. We hope that they’ll be able to work and pay their bills on time. We want them to find love and friendship. And I do worry about who will be there for my child when I am gone.

Perhaps the attention being given to the autism epidemic will continue so that there will be money put aside not just for research into the causes of autism but also funds for tomorrow to sustain the lives of the many people diagnosed with autism today.

It is my hope that the village steps forward and embraces all of these children, and there will be no need to ask what will happen when the parents are gone.

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Thresa Katz lives in Santa Clarita.