Auntie (or others)- diagnostic thoughts? (sorry, long)
nomadica
member
For the most part I?ve stopped worrying about the diagnosis and am focused on treating deficits, but I do still wonder about whether or not DS is truly on the spectrum. He was evaluated by EI at 12 months and was 2 standard deviations below the mean for language skills; however, his social/personal skills were rated a standard deviation above the mean, and the evaluators gave their non-professional opinion that ?no way does he have autism?. I wasn?t convinced though, and had him evaluated by a developmental pediatrician at 14 months. She gave him a PDD-NOS diagnosis (which he met criteria for, for sure), though she was honest that she wasn?t totally sure what was going on with him, but that he clearly needed services. She stated that his presentation was complicated by the fact that he?d had multiple ear infections that resulted in hearing loss, affecting his language (hearing issue now resolved). Social issues also appeared to be present, though so hard to judge at this young age.
Fast forward 6 months, with pretty intensive daily ABA, and DS is doing great. He is at age level for his expressive language, and while his receptive language still seems a bit behind, huge progress has been made. There still appear to be some social issues. DS?s eye contact isn?t always great; when someone comes up to him when I?m holding him, it takes a while for him to look at their face. He also doesn?t really look up at me when we?re playing with him, and generally plays independently with his toys. He does not say ?hi? or ?bye? without prompting. However, DS seeks us out for games (hide-and-seek, running games, etc), for singing songs, and for reading books. He is in daycare 3 days a week, and his teachers there says he interacts well with the other kids, sometimes playing peekaboo and sometimes copying things other kids do and laughing, and he participates in circle time without a problem. I wouldn?t say he?s a very affectionate kid but he does seek me out for hugs and cuddles. DS did not point until recently and then only with ABA, though he does now occasionally point out things to me.
DS has never engaged in repetitive or unusual play, and generally plays appropriately with toys. He is very redirectable from activities he engages in. He also seems to have no difficulty with change or transitions; in fact, I would describe him as fairly easygoing, even mellow. He does have tantrums when he doesn?t get what he wants, though they?re relatively mild and he?s easy to redirect. DS does not have any sensory sensitivities, is an excellent eater, and is a good sleeper. He has age-appropriate adaptive skills. So hard to judge intellectual skills at this age, but he is learning so quickly in therapy and has some skills above his age level (e.g. knows all his shapes), that his therapists believe his intellectual skills are at least average.
I?m just curious on your thoughts, diagnostically and otherwise? I know he?s very young and a lot can change, and I think in my heart I feel that he is somewhere on the spectrum. But I?m curious about your opinion.
Re: Auntie (or others)- diagnostic thoughts? (sorry, long)
I'll be watching for auntie's reply on this.
DS2 (who is now nearly 3) had me overanalyzing his every move and non-move at that age. His speech was significantly delayed (zero words at that age), eye contact was poor, often didn't respond to his name being called. He was an easy child, no tantrums, played with toys appropriately, no sensory concerns that I could distinguish, good sleeper.
But I was very, very concerned and it was hard to put my finger on why. The speech was obvious, but there were several other deviances that together seemed like red flags to me.
Now, at 2y10m; he is developing well with a working theory (probable) of childhood apraxia of speech. Most of the social/eye contact/etc. concerns have resolved. He is more or less like any of his classmates with the exception of poor articulation of certain sounds. He is making good progress with speech and I can actually now imagine him graduating out of speech therapy at some point. Quite a change from one year ago!
Knowledge is a double edged sword. Best for the child sometimes comes with a residue of fear for the parents.
As a parent, you really do need to listen to your gut. I am glad I got services when I did, DS absolutely benefited and so did I. I have learned a great deal in the last year working with him. But I am posting my story as a possible outcome as well.
The developmental pediatrician said she would have given a provisional diagnosis, but that no longer qualifies for services, which she felt it was important for him to receive. I felt that he did meet criteria for PDD-NOS at the time, at least technically; now I'm not so sure, but my gut continues to tell me that something is off, despite him doing so well. I guess I'm most curious about his lack of repetitive or restricted interests/behaviors, and lack of difficulty with change and transitions. It seems so non-ASD, but I'm not sure that I can explain his social issues and things like lack of pointing/following a point any other way.
interesting thought:: I have a friend who is in "the field" and I gave her an example list of symtoms/behaviors. She said yes, without seeing the child, she thinks she would be in the spectrum. The list? How I was as a child, as I remember, and as described by family. I am not autistic, I may be a bit quirky, and I do have one borderline OCD but I am not autistic. But by todays standards I would have been evaluated.
I'm rather hypervigilant about his play and looking for repetitive behaviors (though I'm trying not to do this); hopefully I'm not missing it, though I can see that he might not yet be at a developmental level to demonstrate this. I understand that piece isn't necessary for the PDD-NOS dx- from what you've seen/read, is it fairly unusual to not have that piece in kids with ASD?
What you said in your first post about how he could be straddling the line on normal, be fine, or be clearly ASD is pretty much exactly what the developmental pedi told us. I guess I just wish I could know, but of course that is silly. I feel like I can handle anything (like is DS never moves out of the home, never works, etc), except him being unhappy. And I know he's at risk for that.
We are exactly like that, trying to figure out what is typical and what is not. It drives you crazy. We also are running with the dx; better to accept that as the current reality and treat it than the other options (e.g. denial).
Thank you for your story! Sometimes it's hard to know if I should try to be optimistic about a great outcome, or accept that it could be a not-so-great outcome. I'm trying to do both but it is difficult!