Nothing’s ever certain when it comes to autism, but there’s definitely some kind of genetic component. Naomi had already joined our family when Ben was diagnosed, so, naturally, we paid close attention to her development as we helped Ben get a leg up on his…and, naturally, when she wasn’t talking by the age of eighteen months, we were concerned.
So, we got the ball rolling. First came the referral to the audiology clinic. Naomi screamed through the hearing tests, but they concluded that she could hear fine in at least one ear. The audiologists didn’t recommend an autism assessment, though.
Then came a referral to speech pathology. The speech therapist and Naomi got along famously, and she communicated and played with the therapist in ways that she never did at daycare or with us. Still, the therapist noticed a couple of trouble areas and suggested an autism assessment. “Better to have them look at everything all at once,” she suggested.
Which is pretty much what the audiologists had said about Ben, way back when. Naturally, I blanched. But I agreed, because it did make the most sense.
The thing was, aside from the speech, Naomi was much stronger than Ben in terms of social interaction and shared attention. She wanted to look us in the eyes and laugh. She wanted others to share her space. But, she undeniably had some speech issues, despite everything, and she had some sensory preferences for soft fuzzy things and gritty things, like seeds and sand.
She went for an occupational therapy assessment, as part of the autism global assessment. She did well, but again, there were concerns.
Then, we got a call from the CLSC and CROM, the agency that provides ABA services. They had an early-intervention pilot project where one of the therapy specialists would consult with us and the daycare and give us advice until such time as a final diagnosis came down.
We accepted the help, but didn’t think we’d need it. Then game the assessment with the psychiatrist. We thought Naomi would pass with flying colours, but instead, she just shut down and would respond to the psychiatrist until the psychiatrist left the room. Then, Naomi perked up and started playing. The psychiatrist observed from behind the one-way mirror.
The thing about Ben’s diagnosis that convinced us he was autistic was that he behaved exactly the same way during the assessment that he did at home. There were no changes in demeanor. Naomi, on the other hand, was clearly too shy, and I worried about her getting a false-positive.
The psychiatrist was worried about that as well. Naomi hadn’t behaved at all as she expected, so we scheduled another appointment.
Meanwhile, the pilot project ran on, and the specialist reported back to us that Naomi continued to improve between every visit to the daycare (and she went on and on about how great the daycare was – which is true. It’s awesome.) She submitted a report that we brought to the final assessment.
There was another psychiatrist there, and Naomi was shy with him, but she was happy as a lark with the psychiatrist from the previous visit. She was comfortable and she did everything she was supposed to do.
The verdict: Naomi fits the “broader genetic phenotype” but she’s not autistic. Basically, she has some of the genese that would predispose her to autism, but they haven’t triggered, for whatever mysterious reason they get triggered. They key is to this diagnosis is that she’s so much stronger in most of the key areas used in an autism evaluation and she continually improves in the areas where she’s weak. The report from the pilot project was all the corroboration the doctors needed.
Phew!
Now, they’re going to continue following Naomi for at least one more assessment, but our concerns are much less than before.
Now we just have to keep her from climbing up the bookcases.
And, as you can imagine, I’m grateful to the Autism Clinic for all they’ve done for Naomi, as well as Ben.