As a parent, you quickly learn your children’s personalities. We have four children, three girls and one boy. Now with the girls, I will fully admit that I was overwhelmed. When our youngest daughter was born, we had three daughters ages five and under. My mom called them her little whirlwinds, and man did that describe them well! Seven years went by, us thinking that our family was complete. That was until I found out we were pregnant with our fourth child, a boy. This is where the search for an autism diagnosis began.
Fast forward. Early morning on the thirteenth of September, little man and I get ready to go to his autism screening. Though neither of us do great getting up early, I was oddly looking forward to this three and a half hour long evaluation. It wasn’t excitement, but a calm and relief. After that appointment, we would have an answer one way or another.
The 3.5 hour Evaluation
The appointment was pretty much exactly as I had thought it would be. I had done some research (i.e. searching the internet for an answer that only a doctor can give), so I had a good idea what would take place. After arriving and signing some final forms, we waited in a waiting room with a few other families. The children in there were waiting for other appointments, and my son really didn’t notice their existence. We only waited five minutes tops before two ladies came in to meet us and take us to his appointment.
They walked us back to a plain room with just a table and some chairs. They discussed what would happen in the evaluation and what to expect. From there, we went on to do a one hour evaluation with the occupational therapist (OT) while the doctor listened in through a speaker. I was told to only interact with my son if he interacted with me. It was all play type evaluations, seeing how he would interact with the toys and therapist. After this was over, the doctor and OT talked in another room for about fifteen minutes. During that time, my son had a small melt down but seemed to calm down fairly easy enough.
After that, the doctor came in for her part. She had a student doctor with her (I approved of this, as I am all for other getting learning experiences). The doctor went over his health history, my family history, and other questions. She did a lot of evaluations with him, with puzzles and other interactive play. I was able to interact during this part. One thing I noticed, was that I was basically his interpreter. There were things that I instinctively knew what he meant, but no one else would seem to understand. The doctor left to discuss with the OT and student doctor their observations and results after a little over an hour. The five to ten minutes she originally quoted, slowly turned into a fifteen to twenty minute wait.
When the doctor returned, she came back with a white folder in hand. She apologized for the wait and told me that it was a good thing, that this was not an easy diagnosis. The first thing she mentioned how well he did in certain areas, and how impressed she was with the early intervention he had received so far. We went over both evaluations. They noticed a lot of the same things I had been seeing up until then. Moments where he seemed as if nothing was wrong ,but then the next moment where he didn’t seem to notice anyone around him.
She went over some parts of the evaluation that gave her some insight into what was going on. When they had blown bubbles he loved them, but never asked for more. More than that, he never looked to the OT or doctor to blow more, only looking to the bubbles and the bottle of bubbles to indicate he wanted them.
Another aspect that gave insight was the train her was playing with. He loves trains, a lot! At one point the doctor placed her foot on a train to block him from moving it. He never looked at her to move her foot, nor asked or seek help to remove it from under her foot. During the entire process, they observed him not answering to his name at all. That, and the fact that even I his mother, could not obtain a social interaction from him. He does make eye contact with me on occasion, but I cannot get him to respond back to a smile with a smile.
The final thing that set their answer was his loss of speech at 19 months. Our son had about thirty or so words at eighteen months, but lost most all of them by nineteen months old. Loss in speech is a symptom only known to autism. It was then, after these explanations, we finally received an answer. He was diagnosed Autism Spectrum Disorder (Level 2), Speech and Language Disorder, and a Sleep Association Disorder. With an Autism Diagnosis, it guarantees him the therapy and help he needs from here on out.
At 23 1/5 months old, we received a diagnoses that many won’t get until they are much, much older. We are making some additional adjustments, but most things we were already doing with him. He will continue with speech therapy, as well as occupational therapy. They recommended ABA (applied behavioral analysis) therapy as well as genetic testing.
Where we go from here
We will see where his therapy takes us, but the genetic testing we have already decided to move forward with. After running it through the insurance, we found out he can have the testing for $0 out of pocket. They will be looking for fragile X and chromosomal microarray.
So here we are, just a few days shy of his 2nd birthday. One thing I can say is that a diagnoses doesn’t mean a label or an end. This is one highly intelligent, and down right hysterical little man. We will take things one day at a time. As time goes on, I will be posting updates on how things are going and what steps we are taking. Through my own search for information, I have seen a continued need to share our journey. So stay tuned, and we’ll see where this adventure takes us!