The possibility if this second diagnosis was suggested to me over a year ago by the previous school psychologist. I've thought about it and done some reading about the autism spectrum diagnosis in people with Down syndrome. And I've been holding off on the evaluation, not sure what I think.
Sometimes I really see autism-type symptoms (repetitive, restricted play, impairment in social functioning with other kids, prefers to play alone rather than with other kids, and oh, the sensory issues!). But I also see this kid who can really engage with adults, make eye contact, can tell me things just to share and not because he wants something (the other day he told me "breeze! Breeze!" delightedly when we were walking in the wind). Sometimes it seems he prefers his electronic toys over people, and people who see him at park play dates may observe him playing alone see someone in his own world, not engaged. But, boy, you should see him at school on a good day, so engaged with the teacher and the aides, and when we leave campus he greets the many adults he knows. On the last day of school as we walked out he greeted another dad excitedly by name "Marcos!" and asked for "ready set go". This is another parent of special needs kids who lifts Nathan up in the air on "go".
I've read that 5-13% of kids with ds are also on the spectrum. I read that with the dual diagnosis, they look at whether the child has appropriate social skills for his or her developmental level. In other words, if the child generally functions at a 2 year old level, does he have the social skills of a 2-year-old? By that kind of a measure, I think Nathan's social skills are behind some of his other skills. But as you can see, I'm on the fence about whether he fits the asd diagnosis. So we will let some professionals do an evaluation and tell us what they think. The diagnosis would not change any school services but might make him eligible for more behavior therapy at home. However, at this point I'm not sure whether I'd want more hours of behavior therapy at home-- I just asked our current behaviorist if we could meet once weekly rather than twice. Our current services focus on parent training (around potty training goals) and I found it repetitive. The behavior services kids with asd get focus more on working with the child. But it's really intrusive to have people in your house all the time and I like to be outside at the park and so forth as much as possible rather than sitting in the house with kids, so I'm not sure how well that kind of service would work for us.
So, I feel no real rush to get this done, and have no particularly strong desires about the outcome of the evaluation. It will give us more information, within the limits of any testing or evaluation process. And fundamentally, whether Nathan gets another label or not, he's still exactly the same Nathan. Labeling his behaviors doesn't change them, nor does it change the rest of him. I know I have some feelings about the stigma of a dual diagnosis but I need to remind myself that diagnosis is just a description, useful if it leads to useful interventions or greater understanding, and otherwise, it's just a word, and doesn't negate any of the other words that describe my Nathan: a sweet, funny kid who loves music and has a great auditory memory, likes water and boats, loves school and positive adult attention, enjoys electronic toys and can entertain himself peacefully for extended periods, is a huge fan of Dr. Seuss, Bob Marley, and oddly enough Stephen Colbert, and can be a really sweet and loving snugglebug.
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