Update/talk to me about the ADOS.

kcisthebombdotcom

So dd had her six month neurodevelopmental pedi checkup today. It went pretty well. She definitely shared my concerns of autism especially with the new info about her knowing her letters/starting to read. She was pretty unresponsive to her name (which I stated had gotten better, haha), wouldn't follow a point, and the doctor had a really difficult time engaging her. When she sat down to play with her, things got better. She eventually spoke to the pedi--said no when she didn't want to do something, said done when she wanted to move on, and asked for help. She made good eye contact when using words to communicate which she said was a good sign and demonstrated some joint attention as well. After the Eval when i was speaking to the doctor about her thoughts, dd started intentionally being naughty to get my attention and giggling which her dr said was not consistent with autism. She said there was enough she saw to recommend doing the ADOS to know for sure, but felt that even if she was on spectrum that the prognosis was excellent considering both the hyperlexia and how well she communicated. Overall she said she was a fascinating case but she was completely stumped by her.
That leads me to my question. How long does the ADOS take? What will be expected of her?

typeset

I can't tell how long the ADOS took for us because they bundled it with the Vineland and the REEL and the Bayley Scales in a four-hour appointment. Google says 30-60 minutes. There are different models they can administer depending on the child's age and verbal ability. The ADOS tested things like response to name, joint attention over a novel toy (pop rocket), how he handled play sequences like bathing a doll, stacking blocks, doing simple puzzles, and whether or not he used a block as a placeholder for a toy phone. You can look it up online. The psych was in the room with us while the developmental pedi watched through two-way glass. He was allowed to take breaks as needed. Score is given as a range (moderate to severe, etc.). I had to ask for the kid's score because the children's hospital we used doesn't typically include ADOS results in reports.

kcisthebombdotcom

Would I be in the room and allowed to play? Dd is an introvert and takes a while to warm up to people before she will play and talk--I can't imagine in thirty minutes she'd be chatty and playful with a stranger.

d.f

DH and I were in the room but we were asked to resist engaging/scaffolding him unless he engaged us.

kcisthebombdotcom

They'll be doing the ADOS. They're turfing out the other testing to the school department psych. My developmental pedi loves my school districts psych and raves she's the best in the state.
She told me that she said hyperlexia is a positive thing because those kids seem to have the best outcomes. I guess there's ways the reading skills can help treat the social deficits (though I'm not sure how) and language (she picks up words at a much faster rate if the word is shown to her and the skill is generalizing to using the word functionally). She also said kids with hyperlexia can lose the diagnosis with age and since she has gained verbal communication skills as her language progressed she felt that was telling.

kcisthebombdotcom

Yeah, I'm super lucky and happy we bought into the school district. Their services are supposed to be really good. She said lose the autism diagnosis--one of the subtypes of hyperlexia involve kids who initially present with autistic traits that fade around school age or so.

kcisthebombdotcom

-auntie- said:

Then they're not really autistic. It makes me crazy that doctors hand out the dx when it isn't appropriate. A child can have autistic traits, and get services for them, without a dx. It sets an expectation that some kids are "cured" when they were improperly dx'd. As the parent of a kid who did well with therapy but is still very much on spectrum, this precedent make it seem as if he'd be "all better" if I'd just done something differently. 

That makes sense, but from what she told me that Katie Beckett would provide us a lot more services with a dx than without though I get that varies from state to state. I could read between the lines that theyre very generous with diagnosing to get kids more help. Naturally as a parent I'm going to take whatever they offer to help my kid.

Justinlove

I am so butting in to a conversation I really have no business being in but... Correct me if i am misunderstanding the situation. The dr. dr gave a diagnosis of autism just to get services when the child really isn't autistic?

kcisthebombdotcom

Justinlove said:

I am so butting in to a conversation I really have no business being in but... Correct me if i am misunderstanding the situation. The dr. dr gave a diagnosis of autism just to get services when the child really isn't autistic?

From what they told me, high functioning kids are really tough to diagnose this young and its tough to tease out autism from adhd. if a kid has a decent amount of traits they do diagnose to help get services then reassess in a few years when age has hopefully brought more clarity to either confirm or diagnose with something else like ADHD.