Your BFF has come to you, distraught: “They say he’s on the autism spectrum.”
She’s speaking of her son or daughter, whose behavior has been puzzling and challenging for a while. Now she has a diagnosis, and in spite of the widespread media coverage of autism in recent years she may be confused and scared. What do you say?
I have been there and done this—from both sides.
My son was born in 1989, before the term “autism spectrum” was even in use. The first label my husband and I heard was “PDD,” for “Pervasive Developmental Disorder,” but I learned fairly soon that that was a synonym for autism, and all I knew about autistic kids was the stereotype that they couldn’t speak and that they spent their days rocking and emitting animal sounds.
Things are much better now, both for my family and for the autism community at large. Today you can’t pick up a newspaper without seeing another article on the subject; meanwhile, bookstore shelves explode with memoirs by people on the spectrum and their family members.
But most of us don’t really pay attention to an issue until it affects us.
How you help your friend depends on you and your unique relationship, but in general terms, here’s how you can start:
1. “Your daughter is the same kid she was last week.” Remind her that while labels can be useful, they can also be misleading. And this is where the widespread media coverage I just mentioned might temporarily be doing more harm than good. It’s human nature to distance oneself from others’ misfortunes. I’m not a refugee fleeing Boko Haram; I don’t have cancer. Those things don’t happen to me. Now this “something” is happening, and I do not want to be part of it—but I am.
Her daughter is the more than her diagnosis. Say, “Hannah is welcome at my house, playing with my kids, anytime.”
2. “The future is yet to be written.” All parents’ biggest worry is what will happen to their child when he or she is an adult, especially when his/her parents are gone. Within our local autism community group we remind ourselves that where our children will end up is unknown; we needn’t get bogged down in worst-case scenarios about homelessness and government dependency.
3. Be patient with your friend. Parents need time to adjust to a diagnosis. If your friend insists “this is going to go away” when it’s clear to you that it isn’t, don’t say, “the sooner you come to terms with this the better.” Back off. In fact, the diagnosis might be premature, especially now when clinicians are ready to hand it out with the lollipop after the shot.
However, with children on the spectrum, early intervention is crucial, so if months go by and your friend is still explaining away her child’s behavior with, “But all kids are picky eaters/like routines/ask the same questions over and over,” you’ll want to have that heart-to-heart.
4. “You’ve been a great mom.” We still live in a blame-the-parent world. My own therapist suggested at first that my son’s difficulties arose from my not spending enough time with him. Yet I’ve been guilty of this myself: I believed that my own friend’s inability to set limits was the cause of her daughter’s problems. (I never actually said that, but if I had, I would owe her a big apology.)
Your friend may well have been on the receiving end of the same criticism, even if framed as, “Have you tried limiting TV/using time outs/talking to him?” Kids on the spectrum often require far more creative approaches.
This blame-the-parent mentality demands grandiose sacrifices. The first case histories that my son’s therapist handed me uniformly described how the mother “quit work to coordinate and participate in her son’s treatment.” The thought of giving up my own work to sit full-time on the floor surrounded by toy cars was a psychological death sentence.
It’s not the mom’s (or the dad’s) fault, and yes, we’d do anything to help our kids but to shoulder the full burden as penance for a mysterious crime isn’t necessary.
5. “You are not alone.” Some sources say that as many as 1 in 68 children are being diagnosed. The positive outcome of this growing number is that there is a corresponding explosion of resources available. Sit next to your friend at a computer and google “autism resources” in your area. You will find, if anything, too much. But that’s why she needs you now: to help sort through these options, from the IEP (Individual Education Plan) that the school district will offer to the summer camps that will provide one-on-one support at no extra charge.
Then encourage her to plug into the existing community. My son now has a wide circle of friends on the spectrum; my husband and I are friends with parents. I can’t overstate the difference it’s made.
6. “You can do tons of mainstream activities.”
Just a few decades ago, kids with special needs were kept sent to different schools and even shut away in institutions. In most cases that only exacerbated the problems. Now, fortunately, the trend in education is to include kids on the spectrum in regular classrooms with necessary supports.
Outside of the classroom: advise your friend to take her son everywhere she takes her other children.
7. Empathize. This one word contains everything I wanted then and now. I cannot tell you how many times, when dealing with an inexperienced camp counselor or the director of the pre-school that later expelled my son, I wanted to say, “This could just as easily be your child.”
This is why the blame-the-parent myth hangs on: We tell ourselves, “If I’m a good parent, my kid will be okay.” But none of us are safe from life’s random adversities. We get through them because we have each other.
Help your friend get through this and you will have done a mitzvah.