A Conversation with Whitney Ellenby, Author of “Autism Uncensored”
Atlanta Parent asked author Whitney Ellenby to talk about her family’s struggles and triumphs in raising a son with autism. Her new book, “Autism Uncensored: Pulling Back the Curtain” (Koehlerbooks, $19.95), explains in vivid detail some of the many challenges families dealing with autism must face and it offers advice and support.
Q. Your book begins with your son Zack’s first plane ride to Miami, when he suddenly creates quite a scene, a situation many parents of autistic kids have faced in public places. It sets the tone for the entire book with its honesty. What happened on the return trip?
A. The return trip was not much better. It is not uncommon for autistic children to land a plane. …They feel trapped in the space and don’t know when it’s going to end. … On that trip, it was terrible, and it brings up a whole host of things, from the anger and resentment you feel toward your child to the humiliation of everyone watching, to the genuine fear that you’re not going to get them under control.
I end the chapter with, “We’re going to have to do this 100 more times before he gets it right.” And that’s a big message of the book, if you start avoiding all the places where your child has tantrums … now you’re really restricting your world. … Repeated exposure is critical, you can do flashcards, you can do social stories [about plane rides], all this prep work but children with autism are literal thinkers, experiential learners.
Q. What do you wish you and your husband Keith had known when you first received Zack’s diagnosis?
A. Autism brings out the strengths and weaknesses in a marriage … you may react very differently. And that can result in divorce – there’s a reason 85 percent of marriages collapse [when a family must deal with a seriously ill child]. One parent has to surrender their job and stay home and deal with all the therapies … the other has to remain employed to finance the therapies.
I would have liked to have known how many years we would be [in intense therapy] so I would have had a realistic image.
It’s also important to know how you and your spouse are responding to taking your child out in public. I wish we had negotiated, which we did later, what are our respective attitudes, what can we tolerate when Zack breaks into a tantrum?
Q. Early on, you’re hoping intense therapy will rewire Zack’s brain and he’ll become a typical kid, but that didn’t happen. What therapies did seem to help?
A. The formal therapy that did result in some progress was ABA, Applied Behavioral Analysis,still the most widely prescribed intervention. It’s intensive, 40 hours a week of drills with the child … in the hope you can create connections that aren’t naturally there. ABA did the most for him, but it did not do nearly as much as I was told it would do and I don’t believe it does nearly as much for anybody.
There are a slew of other interventions, everything from the diet, to headphones, to horseback riding, to hyperbaric oxygen chamber, and chelation – it’s important that parents do their homework before doing any of these interventions. Make sure you’re seeing real meaningful progress.
Q. What advice would you give other parents with a newly diagnosed child?
A. Don’t wait too long to get them out into the world, do arrange play dates, get them to the park, to the swimming pool, even if they’re flapping, even if they’re bouncing, that’s okay, get them with their peers. The more you get them into the world, the less fearful they will become of the world.
And lose the shame. We live in a world where there’s never been a better time to be different. It’s okay to tell people your child has autism. … People are kind.
Q. A child with autism puts a tremendous strain on a marriage. What helped you and Keith cope?
A. Here’s what really helped, a sit-down between us, about what is our protocol going to be in the situation of this, this and this? … Make those decisions, calmly, quietly, lovingly, not in the heat of anger, don’t wait for the public scenes to hit.
Once you’re on the same page by listening to each other and finding a way to cope with the worst parts of autism, the insomnia, the public tantrums, the question of “What if he never gets better?,” then your marriage is stronger than ever.
Q. How old is Zack and how’s he doing?
A. He’s 16 and he’s fantastic. He’s still very much autistic, a poster boy for autism, he has all the ticks – he bounces, he yelps, he gallops, he doesn’t have a ton of words, just enough to be functional. What he understands gets stronger all the time, which is very common in autistic kids.
Zack now is a kid who can go anywhere – he went from being a kid who was hobbled by screaming tantrums to a kid who can fly to Europe, he can go to rock concerts, symphony concerts and theater. Now he’s happy, well-adjusted … still very much autistic but the world is not a frightening place to him. … He’s a delight to be with.
– Amanda Miller Allen