Thinking back, I'd been a little concerned about Buddy's speech since he was 15 months or so. Sissy, his twin sister, started signing with us around that time and had 2-3 words. But Buddy wasn't picking up on signs or words at all. When I talked to people about my concerns, I was always met with reassurances that boys speak later than girls, especially boy twins, and that he was so focused on his motor development that his language would come later. Even our pediatrician and nurse practitioner said the same thing.
For some reason in late March I began to get more worried about his lack of communication. I tried to see how often he responded to his name (about 25% of the time), how often he'd follow a simple command with a gesture (never), how often he seemed to know what I was talking about (never). And then I began comparing that to his sister. And that's when I realized that Buddy gave me no indication that he understood what I was saying to him.
I decided to get him evaluated by Early Intervention to see if he'd qualify for speech therapy. The evaluation showed he had a very significant receptive language delay (meaning that he doesn't understand what he hears) and expressive language delay (meaning that he doesn't vocalize and/or speak as many words as he should). He also had a minor cognitive delay, too. At the time of his evaluation, his only words were: cat, dada and the sign "more." Shortly after starting therapy, he added the word "bye," the signs "ball" and "baby," and he began shaking his head "no" in response to questions.
Our first foray into therapy was an hour of developmental therapy and an hour of speech therapy a week. We continued this for several months. In August, I was feeling really discouraged by his lack of progress, despite getting tubes in his ears for recurrent fluid and infections. I also started researching autism. One day, it just struck me that when he was excited, he flapped his hands in front of his face and that he walked on his toes almost exclusively. I was no autism expert, but I knew those weren't good signs. Many long nights were spent researching autism and watching You Tube videos of autistic children. At this time, I found the awesome video glossary put together by Autism Speaks and First Signs. It shows the differences in behaviors between autistic children and neurotypical children. When I watched the videos of the autistic children, it was like I was watching my own son.
I was shocked. Floored. How could I have missed this? How come Early Intervention and his therapists were missing it?
Now in panic mode, I began searching for a way for him to see a developmental pediatrician for an evaluation. I was extremely blessed in that our local Easter Seals has a multidisciplinary evaluation clinic without a long waiting list. Buddy was evaluated and found to be autistic in September. Even though I had been expecting a PDD-NOS diagnosis, the autism diagnosis hit me hard. It's hard to really remember much about the first month after his diagnosis. I think my mind was occupied with "Oh shit. He has autism," for about 75% of my waking hours. A researcher by nature, I dug in, head over heels, reading web page after web page, book after book about autism.
That was 7 months ago, and slowly, but surely, I'm coming into my own, living in this spectrum life with my son.
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