ASD testing question

[lessel]

This afternoon DS2 (4y) had part 1 of ASD testing. Part 2 is in August. He did nothing to engage with the tester. He completely hid behind me or buried himself in my lap. He didn’t utter one word to her or so much as look at her, clamped his hands on his ears on and off, and the most he did was grunt or nod when I talked to him. He’s shy for sure and the doc does have some selective mutism concerns, but this was extreme for him. He did an OT screening when he was 2y and the OT told me he was “impressively stubborn” because he stared at the wall and didn’t engage for 20 minutes. But when they asked me to help with the eval he opened up and they were able to assess. Nothing worked this time. And I mean, he was pressing hard into my lap or back, really burying himself to avoid the situation.

Of course, when we were in the waiting room and it was over he was back to talking in full sentences and asking if he can come back and do it again tomorrow. 🤦🏻

I’m going to email the doc, but would it be weird to ask for an attempt at a do-over? Is that even a thing? Like maybe a morning appointment instead of afternoon.

[jennistarr1]

100% doesn't hurt to ask. Is the 2bd appointment in August because if availability?

They behaviors shown, do you think that captures the reason you are having him tested?

I feel like ASD testing is a large part questionnaires and behavioral observations

They will likely planning for day 2 of testing and shifting around if there was anything they couldn't get day 1 they will try again

I wish for you the 2nd appointment was sooner because his comfort zone seems like he warmed up and is now "ready"

[lessel]

jennistarr1 , I went ahead and emailed the doc this morning. The next appt in August is just because I think of availability. We wanted him to turn 4 before this testing, which he did last week--so that's why the first appt was this week. I feel like some of what they saw yesterday is what we're concerned with--for example we get feedback from school that he mostly nods or gives one word responses vs. at home he's talkative and in full sentences. But he has some other behaviors (stimming) that they didn't see. And he was doing some things yesterday (like rubbing earlobes--maybe a self-soothing thing?--that I'm not sure if the tester could observe with him buried into me). I'm not exactly sure what yesterday's testing was supposed to encompass, but they had toys out and I'm guessing wanted to assess things like motor skills, pretend play, etc. Which we obviously did zero of.

[lucybrown]

I don't think it's odd to request a do-over. My son's functioning varies wildly. He was diagnosed in the evaluation where he barely engaged with the evaluator. She was very loud and in your face and that's a huge NO for both my kids. When I brought up my concerns with her, she stated that the world won't wait for him and dug her heels in about her opinions. It also felt like a hard sell of her ABA services, so we moved on.

The second evaluation with a different team went so much better. He was engaged and very eager to please the multiple people in the session. They did not feel he met diagnostic criteria, but gave him a different educational diagnosis and an IEP to access services through the school district. That was a year ago and while he still struggles in areas, he has made so much progress with a great environment and support. He met nearly all his IEP goals this past year. Their 3K program was such a good fit for our kiddo.

After the first evaluation, I wanted a more comprehensive medical opinion, not from someone that owns an ABA clinic. We have an appointment next week for a 3rd opinion after being on a waiting list for 9 months. (4) has made big progress in school, but still struggles in some areas. We'd like another opinion on what's going on and to get him into private OT and other services. We need additional support beyond Google.

[lessel]

lucybrown, Thanks for that. You've reminded me I also need to fill out paperwork to request school district eval to assess whether he's eligible for services during the upcoming school year. We're planning on keeping him at his current daycare for pre-k (private) but I need to see if there's anything he qualifies for. They tested him right at 3, but said he wasn't eligible...another situation where I had to engage to get him to do the assessment.

[lucybrown]

Jun 21, 2022 13:09:37 GMT -5 lessel said:

lucybrown , Thanks for that. You've reminded me I also need to fill out paperwork to request school district eval to assess whether he's eligible for services during the upcoming school year. We're planning on keeping him at his current daycare for pre-k (private) but I need to see if there's anything he qualifies for. They tested him right at 3, but said he wasn't eligible...another situation where I had to engage to get him to do the assessment.

We planned to do the same thing, but changed our minds once the district included bussing in his IEP.  He attended pre-K in the mornings and was bussed to daycare for the afternoons.  There were a lot of extra logistics, but such a better fit for DS.  I cannot rave enough about how the district has supported him. His preschool class included both typically developing peers and kids with IEPs.  His teacher is so amazing an creates such an inclusive classroom.  He received OT and speech at school, both 1:1 and in the classroom.  There was also an early childhood special education teacher there at least 1/3 of the time.  

He absolutely thrived there, but had support on days he struggled.  I would have never pushed for an evaluation through our district if someone here hadn't recommended it.  Highly recommend.  

[lessel]

Jun 21, 2022 14:51:59 GMT -5 lucybrown said:

Jun 21, 2022 13:09:37 GMT -5 lessel said:

lucybrown , Thanks for that. You've reminded me I also need to fill out paperwork to request school district eval to assess whether he's eligible for services during the upcoming school year. We're planning on keeping him at his current daycare for pre-k (private) but I need to see if there's anything he qualifies for. They tested him right at 3, but said he wasn't eligible...another situation where I had to engage to get him to do the assessment.

We planned to do the same thing, but changed our minds once the district included bussing in his IEP.  He attended pre-K in the mornings and was bussed to daycare for the afternoons.  There were a lot of extra logistics, but such a better fit for DS.  I cannot rave enough about how the district has supported him. His preschool class included both typically developing peers and kids with IEPs.  His teacher is so amazing an creates such an inclusive classroom.  He received OT and speech at school, both 1:1 and in the classroom.  There was also an early childhood special education teacher there at least 1/3 of the time.  

He absolutely thrived there, but had support on days he struggled.  I would have never pushed for an evaluation through our district if someone here hadn't recommended it.  Highly recommend.  

If I'm remembering correctly that might be an option with our district too... or, they could offer services at his daycare or I could bring him to a school for services. Lots of options that we just didn't really go through since we didn't qualify at the time. Back then our bigger issue was his speech delay. I don't think that he was doing the stimming behaviors, etc. until after he was 3. I'm thinking I'll start the ball rolling on the school district thing and see if the stars align on timing to give the district the results of the evals we're doing now... I know it can take a bit to get scheduled with them. 

I heard back from the doc this morning and her email kind of threw me for a loop. Basically she said that she thinks his behavior was a reflection of ASD. She said she saw 'many red flags' in her own meetings with him... which, in person, she's said she wasn't really clear on it and that he seemed to be in a gray area (hence the waiting until 4 for testing). She said she's not sure that repeating it will give us different results and we'd have to pay OOP for re-test. So I think we won't do that... but like, I feel like she also tipped her cards way more than she has before so I'm a bit reeling with this kind of presumptive diagnosis I guess you could call it. 

[lucybrown]

lessel, oh man, that's hard. Our first experience was similar. She decided to diagnose ASD level 1 after talking to daycare where his functioning is relatively poor.

Being in the gray area is so hard. I have to remind myself that we're still doing really well for our kids. I talk to so many that didn't receive diagnoses until much older. Two family friends have gone through it where their kids were diagnosed in high school. Still, the wait and see is hard when your kid is struggling.

Sending hugs and lots of good vibes. I'm guessing a second opinion elsewhere might not be OOP? IDK. I'm navigating this all along side you.


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Edited to remove outdated/inappropriate terminology.

[macmars45]

lessel the waiting is hard. I hope you can get another appt and/or the second one in August goes better.

Definitely reach out to your school district. Most have amazing inclusive prek programs and will bus from the all day childcare to the district prek and back if your child has an IEP.

[jg183]

I'm sorry I know how frustrating this is. My son had an evaluation last month and destroyed their office, it was good data (why we were there) but he definitely did not participate in the assessment we planned (the ADOS). We ended up going back another afternoon (my husband took him) and he was resistant but did complete enough tasks and combined with the parent and teacher surveys and he talked to her that day she was able to rule out autism and give him a diagnosis of extreme anxiety and DMDD (which is actually what we had diagnosed previously I just wanted an updated one at 7 vs 4.5).

[lessel]

jg183, The test that we were attempting to do was the ADOS. The office is going to call me if they have any cancellations for testing between now and August. 

I took the day off today to spend with him. He’s been really challenging lately. The last thing he says before bed and the first thing he says in the morning is that he doesn’t want to go to school. It’s a fight every morning. I’m frustrated with him more often than not these days and I just felt like we both needed a break, and I need to have a relaxed day to just reconnect with him.