Finally, the first official diagnosis . . .

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So, we finally have our first ‘official’ diagnosis. I know a label is just a label, and it doesn’t define our son. But we do see it as something to ‘get the ball rolling’ and as some confirmation that we are hopefully moving in the right direction.

We saw a child developmental psychologist a few weeks ago. She administered the ADI-R and the ADOS. So, according to the ADI-R (interview with me), my son scored WAY above the cut-off for ASD. Cut-off scores in four categories are 10, 7, 3, and 1. He scored 18, 16, 9, 3. However, on the ADOS, he scored JUST below the cut-off for ASD. She spent about an hour and a half with him. The cut-off scores on the ADOS are 3, 4, 8. He scored 3, 4, 7. Anyway, her final diagnosis based on the testing is Aspergers. So, he’s a bit young—4 ½--to be officially diagnosed, but I feel like she listened to our concerns. Question is, with evaluation scores changing on the DSMV, what do those scores mean for us? So confusing.

I find it interesting that my scores on the ADI-R were so much higher than hers on the ADOS. I suppose that’s because I’ve known him for 4 ½ years and she just saw him for an hour and a half? Or did I over-exaggerate that much with her? I really tried to not over-state any of his quirkiness, but some of the questions were hard to know how to answer. Another funny note, in the report, she said he showed no ‘abnormal’ anxiety or unusual stereotyped behavior. But I distinctly remember that when she brought out the snacks, he went and hid against the wall and acted fearful and wouldn’t answer if he wanted any but kept shaking his head. I am guessing that’s not a typical reaction of a 4 ½ year old when cookies and juice are brought out. Ah, well . . . a busy psychologist who sees a lot of kids, and I’m at least happy we have something to start with.

She is recommending Speech therapy, ABA and perhaps Sensory Integration therapy. She didn’t really have much detailed description in the report of ‘why’ on any of the therapy recommendations, just the following:
“ His attempts at getting, maintaining, or directing the examiner’s attention and reciprocity in conversation were limited.” (and) “However, he experiences difficulty in spontaneous initiation of and response to joint attention. He showed limitations in comments which referenced some understanding of other's emotions.”

Well, we have a start . . . truth is, we already started months ago with some of our own changes in parenting him as if he were ASD, and a lot of it is starting to help. So, now to maybe add a little professional help and see how it goes . . .

By the way, she recommended an intelligence test. (WISC) He is quite bright. Anyone done that at this age? If you got this far, thanks for listening!

I think as parents, we tend to report mainly on what our kids CAN do , rather then what they cannot, or struggle with. My son CAN play nicely with peers, but mostly,98% of the time he doesnt. So on a question that asks, does your child play with peers, I can say YES or NO. So what do you say? I tend to pick what happens most often, but if you put the best that you see your child, they can score higher. Does my son make eye contact, YES, but he also will sit with his back to someone and have a full conversaiton with them without turning to look at them. I remember one question, "does your child have freinds" and I thought OF COURSE he has freinds...then I thought, well, I do have to bribe him to play with them, and the only reason he has freinds is becasue I am freinds with their moms, and the ones he sees regularly are because we as the moms get together, so the kids do too. Those are the only kids he sees. He has no kids calling him,or asking to play with him, etc...so how do you answer that question with a yes or no answer? YES he has friends, playdates, etc...but they are becasue I am freinds with the moms, and I also have to bribe him to play with the kids appropriately.

I wouldnt worry about the DSM-V just yet, as that is still a good year off, and then they have to allow for changesin testing, etc... that need to be made, and USUALLY Aspergers kids have more issues as they age, or they are more apparent as more demands are made on the kids. At 4 1/2 my son wasnt diagnosed. And he saw several psychologists, etc...but fast forward a year and some months later, and he got the Aspergers diagosis.

I understand your wondering if you over presented or underpresented your son on the ADRI. I think I may have underpresented mine in the hopes that he would not show up as AS. But on the ADOS, he didn't even come close. Like someone has said, you can't really fake being Autistic. I think it's safe to say that at 4.5, if he scored fairly high on the ADOS, as he gets older, he may appear more apparent, know what I mean? I think starting with the therapies that are being suggested, it will definitely get the ball rolling for you. I agree not to worry too much about the DSM criteria changing. Really, if you read it, many truly AS people will still fall under the ASD spectrum. But I think what will happen is that the ones that are really mild may not be on there, which may make getting services especially difficult. I know that in the public school environment, if the IEP says the child qualifies for services, then they must be provided legally. So definitely go with what you've got, get him an IEP before he starts school and all that jazz. That way he is good to go once he starts school. Knowledge is power for sure. Even after Jay didn't show up as having AS, he definitely has some sensory issues, and the diagnositician said I could ask the OT that comes to my campus for some suggestions, which I will do. I don't know, I just think it's nice to have an idea of where to start with our kids, things to do, etc. It sounds like y'all are on the right track. I know you are relieved to have something solid in hand, even if it's not a full blown diagnosis.

At least she recommended specific therapies, but I'd ask her to give you a more detailed overview of what she thinks his strengths and deficits are. I am grateful that we had a very detailed walk-through of our ADOS and what it meant, I think parents need to start demanding this of their providers; after all, you paid for it - you should be told what it means.

Congratulations on getting some answers from this appointment! Why did the psych recommend a cognitive? The WISC-IV can't be administered at that age, the norms don't start until age 6. The WPPSI-III is for younger kids, and would be applicable to a 4 1/2 yo. It spans from just over 2 1/2 to around age 7. What additional information does the psych think getting a cognitive will give you at this point? Just to prove how bright your child is? Just wondering whether the thinking was explained to you at this meeting. It could be in looking for a cognitive profile in terms of strengths and weaknesses related to verbal and nonverbal thinking skills. It can certainly be administered at this age, although scores tend to be less stable, and if you add in asperger's, the scores become even more just ballpark figures.

The psychologist who scored the adaptive profile I completed for school laughed at me for putting "such low scores" and I was underestimating his abilities. I laughed when I saw the teachers, who have only known him this school year, scored him almost identically. It's not just me!

Yeah, I'm at least glad she didn't laugh at me for having the scores I did . . . she seemed to understand that with her he may have been on his best behavior. I consciously tried to not overstate things, and yet I did try to think of him how he is on a 'bad' week, so that I was sure not to forget to mention how it gets when it's really rough. I guess I figured how he relates to change/stress is important. Sure, if he is one-on-one with an adult building Lego--over and over and over, he can do that without much event for HOURS. So, probably, me thinking of him when he is not at his 'best' --70% of the time or more--made him score well into the autism range. The psych seeing him play really well meant he didn't score quite as 'badly'. (Only problems in play were not responding to her emotions, and not reciprocating conversation well for his age).

Anyway, I digress. Not sure why the intelligence test, but she seemed to think he was quite 'bright'. Not sure how that would change anything, except perhaps to, as you said, find his strengths and build on those.

She has also recommended an EEG to rule out 'absence seizures' because he 'zones out' so much when we speak to him.

I suppose with an intelligence test and an EEG, it may help the whole picture. She is going to meet with me after the EEG to discuss results and a 'plan of action' with therapy, so I'll press her then to go into more detail, though I'm guessing that's her plan. So far, what we had was just the report back from her via e-mail. So that's why it was less thorough.

Dang.

Actually, I think this is part of seeing if he fits the diagnostic criterion for HFA and Asperger's (which don't exist everywhere anymore, but I suppose this may not have trickled down to diagnosticians yet.) It would be to determine that there is NOT a cognitive delay, rather than to see if there is one.