Questions people ask: when did you know?

I thought I would start sharing more about the beginning of our journey.

Most common question we get is, "when did you know something was wrong"? And here is my standard answer.

The only reason we knew that something was going on was because my mother spotted it. Ty was about 16 months old and not talking. I didn't think anything about it because our oldest, being only 13 months older and exploding with energy, made me grateful Ty was silent.

I re-read my old journals and I had recorded some words that he did say but they were few, far between and not repeated much. We were all counting on the fact that he was smart, sweet and low maintenance.

2-year-olds should have vocabularies of several hundred words, be pointing at things and making meaningful communication. Ty was communicating to get the things that he wanted but nothing beyond that. In fact he had started ignoring us when we tried to get his attention. It was very interesting to see. He didn't move a muscle when I would call him but the SECOND he heard a candy wrapper or the first strains of "Barney and Friends" in the other room, he was off like a shot.

We have video from his first screening at UNR. They had a speech path, an OT, a psych and some other people in there watching him play for an hour. You can see so much in that one little hour. He was in his own little world. I can even see some finger stims when he was excited. Just the happiest little chubby kid not really interested in people but having a good time.

By the time he reached 18 months old his repetitive behaviors were walking on his toes, chewing on his blanket, watching movies over and over and over again and he added on verbal stims of saying, "eeeeeeee". He was chewing on a lot of things but most importantly he had NO imaginative play. And he wasn't playing appropriately with the toys he had. He could follow simple instructions but they were limited. He got what he wanted by pulling you over to the things he was interested in and since that list was very short, it was easy to learn how to take care of him.

But I remember the waffling. I remember distinctly going over in my head all the reasons why he couldn't have been autistic. He was good at solving problems to get what he wanted. He was happy and enjoyed being cuddled. He didn't spin things. He was on a regular sleeping schedule and was so happy and content. He just didn't have anything to say. I read books on late talkers and looked at aphasia and just regular developmental delay. We didn't have youtube back then and so there weren't any videos I could look at and see examples.

One more main clue was the look on his face. Autie kids lack affect on their faces. They can have a dull, emotionless look to their faces and Ty certainly had that going on.

Which brings me to Spence. December 1998. I was sitting on a couch in Las Vegas looking at Dr. Bryna Siegel. I was nursing Spencer and she was telling me that after doing a battery of tests on Tyler she was giving him an official diagnosis of Autism. Certainly a below average day.

We immediately began our research and found the statistics. Once you have a diagnosis of autism, your chances of another child with it are pretty high. The study in the link obviously wasn't around when I was getting started but I had read something similar. I began watching Spence like a hawk.

By the time he was nine months old, I knew he had it. His attention would fade in and out. I had to fight to get eye contact with him. It seemed like we would get two good weeks of interaction from him and then it would go away again. No babbling. He had the look on his face and the lack of reciprocal communication. He had repetitive behaviors like swinging him self in his bouncy chair. The ones you hang in the doorway. And his verbal stims started up by the time he was 18 months.

Between the two of them I could tell that they didn't look at me for approval. They would look at me to see if they could get away with things, but not for approval.

I hope this helps. I hope that you can pass this along to others and be supportive of them on their journeys and maybe help some little one get an earlier diagnosis and intervention!!