The ADI-R?

macchiatto

Hi all. I haven't posted on here in a little while. We have had a very eventful several months. Quick back story, my fraternal twin boys are almost 5. One is NT; the other has been in therapies for a little over 2 years and has hypotonia, gross and fine motor delays, needed feeding therapy in the past, some social delays, SPD, anxiety, and some other concerns for ASD (rigidity, perseverations), seizure history, along with some intermittent GI issues and recent concerns re fatigue/decreased stamina.

We just got a report from his latest devel pedi appt a month ago. It has his ADI-R results. There's not much explanation but at the bottom it says that according to the ADI-R, he meets the criteria for ASD. He is also scheduled to have the ADOS on Wednesday so I know we can ask more questions then, but in the meantime, I am wondering:  How much does the ADI-R get factored into an ASD diagnosis? Does this report mean he most likely will get an ASD Dx or is it just one piece of the puzzle?

As much as ASD has been talked about off and on for him for a couple of years now, it was still a little bit of a shock to see it in black and white. He just had his brief initial screening for preschool services with our new school district on Thursday and they all seemed surprised he's being evaluated for ASD. After 2 years of therapy and evals though, they tend to bring out the best in him (and the items in the brief screen were all ones he's very familiar with by now; stacking blocks, etc.) and he tends to socialize much better with adults than with peers. I admit I'm confused by this kid and am never sure what to think. He is also finally seeing a genetic specialist next week and a neuro soon so hopefully we'll finally get some answers re whether there may be something underlying his issues.

macchiatto

Thanks so much for your response. I really appreciate your help!

I understand the guilt so well. There have definitely been times where we get that, "He's fine; look how sweet and smart and polite he is!" "Some kids are just quiet; there's nothing wrong with that." "He just never gets a chance to get a word in edgewise with his extroverted twin brother around." I think the screeners thought I was crazy. But I did send them his OT eval from just 3 months ago where he scored at the 3rd percentile for fine motor skills, and the ADI-R report, so at least they can see it's not all in my head. 

The ADOS was on Friday and when the devel pedi and school psychologist came out afterwards, they said he did "very well" and that they had a great time with him. They said lions (his obsessions are lions, the color purple, and long hair/string/rope) came up several times and purple once but it seemed normal and natural in the context and didn't seem to have an obsessive quality about it. They said they still need to score it and put it together with the ADI-R, the forms that his 2 preschool teachers filled out and the forms that the two EI's who each observed him twice at preschool filled out and figure out what to do with all that information.

We have his feedback appt this Friday and I really have no idea what they're going to say because i feel like all that info conflicts. ADI-R came up in the "autism" range but he did great on the ADOS. Teachers noted no social concerns on their forms, but both EIs (who were each focused on him for about an hour per visit rather than him being one of 16 students) noted concerns in the "moderate" range for his social skills. 

His teachers said he plays well with the other kids, that he'll initiate conversations, etc. However, the EIs saw what we usually see at play dates, My Gym free play, church, etc.: He'll sometimes be in a group of other kids (like laughing and bouncing in a bounce house, or sometimes running around with them for a few minutes before he gets "too tired") and he might be there in the mix enjoying himself, but not actually interacting with anyone. And he'll have brief snippets of interactions (which is progress!) but never prolonged interactions. He rarely initiates and if he does, it's very brief ("I like your costume." "Do you like lions too?" "What's your favorite color? Mine is purple.") And when he's doing pretend play, he has very set ideas of how it should go and if the other kids aren't on board, he'd just as soon ignore them. Or he might repeat the same thing over and over while they ignore him and doesn't think to try a different approach. Or when I finally managed a 1:1 play date (without his twin brother) he played nicely with his friend for about 10 minutes (which was progress!) and then refused to play with her the rest of the 2 hrs even though she kept trying to engage him. 

With adults, he can interact well if they approach him just right and he's feeling calm and not sensory-overloaded, but often when adults (even ones he's familiar with) try to engage him in conversation, he'll just shake his head at them or say something like, "I can't tell you" or "Don't talk to me!" I don't know; maybe he has social anxiety or is just super-introverted rather than ASD. But I really don't know what it means if he does well on the ADOS and yet his social functioning elsewhere is as described. The theory for a long time was that his gross and fine motor delays and SPD were causing social delays/avoidance of peers but he had fairly intensive therapies from almost 3 to almost 4 and is still getting EI family training and OT and while his social skills have improved *some* in the past 2 years, we and his EI still have concerns. (He qualified to keep his EI till he turns 5.)

He'll be 5 in a month.

Your thoughts? Questions we should ask at the feedback meeting?