The Fourth Trimester Blog

Two years ago my eldest son, Max, was diagnosed with Autism Spectrum Disorder.

That’s a heavy sentence, isn’t it? I almost need an “*insert heavy music*” after it. But that is the strange thing about Autism. There is no heavy music. There is no lengthy hospital stay. Or an operation. Or a prayer vigil. Life just goes on as normal. You keep on keeping on, with questions and more questions and trying to get through each, completely unique situation one at a time.

It’s one of the most shocking things about this incredibly common disorder. There are no answers. There is, in some ways, no help. You are the advocate for your child. You are the best voice for your child when he or she doesn’t have one. Your child, perhaps more so than a child without such challenges, defines their own unique situation. They are not only unlike any other child, they are unlike any other child with Autism.

What I mean by that is ASD is a spectrum disorder. That means that you can put umpteen number of Autistic children in a room together, and none of them could have the exact same symptoms or behaviors. The disorder manifests in ways that are totally specific to the child and his or her own personality, situation or upbringing.

And joy of joys, because Max was so nonverbal at the time of diagnosis and assessment, we don’t really know where on the spectrum he is. (Much testing requires verbal interaction and exchange.) It’s frustrating.

It makes finding the answers that you inevitably seek so incredibly hard to find. Ultimately, no matter what path you are on in the world of ASD, it comes down to: How do we fix this? How do we get close to “normal”?

We began when he was two, and the pediatrician was concerned that he was not uttering two-word sentences. He did repeat words, quite often, but didn’t really independently come up to us and name them. We took him in for testing and it didn’t go well. He didn’t want to engage with the testers. At all. They concluded we needed to run the gamut of tests.

We talked about it. Ned and I said no. For all of the logical reasons: He’s two. He’s a boy. I didn’t talk until I was 2 ½.

A year later, after being in a preschool class to days a week for a month, Max’s lovely teacher pulled me aside and told me that despite being in her class for that month, he had not said a word. Not a sound. Nothing.

So back we went to the local organization that helps you test and determine if an IEP (Individual Education Plan) is in order. We did it all: hearing, speech, psychological, social … we also had an official evaluation through the closest hospital with a children’s psychology department. It all came back the same: autism spectrum disorder.

Max now has an IEP and attends a specialized preschool class five mornings a week. He has speech therapy in a group setting, and is getting ready to have both occupational therapy and a behavioral plan in place through the school system. We also are fortunate enough to have insurance that covers private speech therapy. Our insurance does not, however, cover ABA (Applied Behavior Analysis) therapy, which is most coveted. We’re seeking a family therapist that specializes in ASD family treatment.

And we are in another unique situation: A year before the diagnosis, we moved to the middle of nowhere. We live in rural Virginia, where the nearest psychologists, developmental pediatricians and therapists are sometimes hours away. There is a need, a great need, and a very limited number of providers. Many times already we’ve not had the luxury of vetting those that treat him—if someone is available, that’s who you get. Or quit and start over with the next provider.

In the triad of Autism, Max most struggled with socialization and communication. He does have some repetitive behaviors, but nothing too severe. Finally, at age four, we are beginning to have conversations. He can communicate what he wants. (He quite loves saying “no” to everything right now.) We’re working on the social aspect, and getting him to interact with peers appropriately. We’re trying to address his sensory needs, so I don’t need to clean spit off the walls and windows every day. It’s a process.

I welcome your stories and input, as I continue to share ours here.