When my son was two, he wasn't speaking, at least not in the traditional sense. He could make, to a limited extent, the initial sounds of words: "ba" for anything from ball to butterfly or "kah" for anything from car to kitchen.
This could have made understanding him confusing, except that he didn't use the words independently; he would only repeat what we said. If we asked a question, rather than answering, he would (to the best of his ability) repeat the question back to us. Our (former) pediatrician didn't feel this was a problem. Her diagnosis was: hyper-anxious first-time parents.
It turns out there's a term used to describe the repeating our son was doing; it's called echolalia. I started researching it and found that it was a problem commonly associated with autism. I researched harder, looking for any conditions in which echolalia was not related to autism, like some run of the mill speech delay. I couldn't find any. Which was crazy, because my son did not have an autism spectrum disorder. The word "disorder" was right there in the name: a disorder, an impairment, a disability, damage. My baby was different, but he did not have a disorder, and he was not damaged.
He was affectionate and sweet: smiling and laughing and giving us hugs and kisses just like any other two year old. And he was amazingly intelligent: he could read and type words on the computer and count to 100. Sure, he wasn't playing with other kids or trying to communicate much with anyone other than us, and he was picky about his food and really sensitive to noises, but probably no more so than other shy, picky kid, right? He was different, not damaged.
Eventually, after switching pediatricians, we took him for a hearing test (normal) and took him to be evaluated by our state's Early Intervention program, hoping to get him speech therapy. I knew from the questions they asked in a preliminary phone interview that they suspected autism. I was indignant. I got off the phone in tears. My son had trouble speaking, but he was not disabled. He was smart and he was going to be totally fine once he got the hang of speaking. He was just different, not damaged.
At the end of the evaluation, our son was diagnosed with a speech delay rather than autism. The Early Intervention folks weren't willing to make the diagnosis then and we weren't willing to accept it. We didn't want our son to carry a label of autism with him, a label that didn't fully define him, a label that would limit the potential others saw in him, a label that would be misunderstood or frightening. Our child was just different, he wasn't damaged. A speech delay is a less severe diagnosis, which was not only better for our psyches, it meant Early Intervention would provide fewer services and spend less money. So, everyone was happy.
My son's speech improved very rapidly. By the time he was three, he no longer had enough of a language delay to qualify for speech therapy services, and by the time he was four he was speaking at an age-appropriate level with above average articulation. But he still wasn't interested in playing with other children; he still had an extremely limited diet; his behavior was increasingly rigid and his interests, obsessive.
As my son's language skills improved, I became more concerned about his diet. He wouldn't try anything new and the foods he did eat had to have the right appearance. He wouldn't eat a cracker or a cookie if it was broken. He wouldn't try a different brand of any of his favorite foods, the packaging and the taste had to be familiar. One day I picked up a book called Can't Eat, Won't Eat and read:
It's easy to spot the parents of culinarily challenged autistic children in the supermarket. They're the ones bulk buying the few items their off-spring will eat -- numerous packs of identical bisquits, several multipacks of crisps (one flavour only), a fortnight's supply of chicken nuggets, several bottles of tomato ketchup, a vanload of cheese toasties and litres of one particular brand of beverage.
I saw myself, in line at the the grocery store with hundreds of bananas, huge crates of one brand and flavor of oatmeal or macaroni and cheese, boxes and boxes of one brand of cracker, and gallons upon gallons of milk. And I thought, "My son has autism, and he needs more help than I can give him alone."
So, when a doctor finally officially diagnosed my son with autism, I wasn't surprised or angry or defensive. I was relieved. I knew now that the label was going to help more than it was going to hurt. It was the key to opening the door that would provide him with the therapy he needed to learn the things that were difficult for him, things I was having trouble teaching him, because they came more naturally to me: eating a healthy variety of foods, coping with change in routine, communicating with others. It was going to help others understand him and help him see that he was not alone in his way of thinking and being in the world.
At age six, he is still struggling to learn the things that come naturally to other people: still struggling to be flexible, to understand the needs of others, to tolerate change and difference, to compromise, to communicate, to manage his anxiety. He's still a sweet kid that teachers and therapists and classmates love and he's still ridiculously smart.
My son is different, not damaged, and the name of that difference is autism.





I bet there's some interesting parallels between your experience with the diagnosis of autism and your experience with coming to terms with your husband's addiction. I know in one post of yours that I read, you mention feeling that something wasn't right, knowing that something about his relationship with another woman wasn't quite appropriate, but not knowing (or not wanting to know) what was going on exactly. It's amazing the power of denial when we're dealing with people who we love so much.
Again, as always, your writing is beautiful and your thoughts are moving.
Very perceptive. I actually have a post about denial that I've been mulling, but I haven't gotten to finishing it yet.
oh gosh...this could be my story. Well, we haven't gotten a diagnosis of autism yet, but this sounds so familiar. I took my son to the school for speech delays but now I realize it is much, much more. Please read my blog!
Wow, that was beautiful. Have you read Eye Contact, by Carrie McGovern? I've got a post about it that's similar to what you're talking about.
Haven't read Eye Contact, but now I have something else to add to my reading list!
As I am coming to grips with my own son's (probable) Autism, it is shocking to read about other parent's experiences with it. It is a punch to my gut, a stab in my heart, forcing me, pulling me, to open my eyes to what I have tried to look away from. Your descriptions of your son are so akin to my own experiences with Owen.
In many ways it makes me feel so foolish to have not known sooner. Though I feel I have always known, I guess it's that I finally stopped denying what I always knew.
Oh, how this made me cry. I have a daughter with sensory issues, and I too had my aha moment when I broke down and realized this wasn't going to just go away. It is so hard. It is so hard. We are all trying so hard.
I found your blog by doing a google search on "child that won't eat". Go figure!
My son is 6 and he will only eat select foods.
Here's an opinion question for you (anyone familiar with autism):
My son never had speech delays. He has always been sensitive to loud noises/chaos. He has anxiety, although not significant to be medicated for. He has only recently shown interest in socializing with friends and now he won't stop playing with friends. Whenever we visit my mother-in-law's house, he gets sick to his stomach and wants me to sit on the couch with him the whole time. He is loving and affectionate. He is "normal" as far as intelligence goes for his age. He will only eat select foods, although he doesn't care about the bowl or spoon used for it. I could go on forever. Do you think there is a possibility he has autism?
I know you are not medically certified to diagnose or anything, but I am just looking for an opinion, from one mom to another.