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Special Needs
nomadica
member
"Losing" the diagnosis (ASD)
nomadica
member
We had a follow up appt with our dev. pedi yesterday (DS was diagnosed by her with PDD-NOS at 14 months, though she stated she wasn't entirely sure what was going on with him). He's done really well with about 15 hours of ABA per week. At our appt, the pedi said she thought it was likely that DS would lose the diagnosis as he isn't actually meeting criteria at this time (the dx will be formally re-evaluated when DS is closer to 3, when she'll readminister the ADOS). DS does show a number of positives- his speech/language have improved to within normal limits over the past 1+ years (he also went from impaired to average hearing in this time after getting ear tubes), he has no difficulty with change/transitions, he has no significant behavior or sensory issues, does not demonstrate repetitive or unusual play or interests, is a very eager and advanced learner, shows social referencing behaviors, etc.
I'm not really sure how to feel. Obviously, part of me is ecstatic, and DH and I have been thrilled with how well DS is doing overall. But, there are still concerns. Just as an example, DS does not greet, ever, without prompting (with the exception of me). His eye contact is diminished. And, I can't really put my finger on it, but something about the quality of his interactions just seems different than other kids his age. He's truly an awesome, easygoing, wonderful child, but in my heart I just feel that there is something different.
The ups and downs of this whole diagnosis thing have been emotionally difficult. Of course I want him to be fine and not have special needs, but I'm also afraid that he does and will no longer qualify for services. And I'm afraid we could "lose" the diagnosis only to have it "return" later on. I guess I'm just kind of venting here, but I'm just not exactly sure what to think or feel on all this!! I suppose the best thing for me to do is simply focus on how well he is doing and enjoy that, which for the most part I have been able to do.
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Re: "Losing" the diagnosis (ASD)
That's really hard, but awesome in a way too that your son is doing so well! I'm going to steal a comment from auntie who said her son was too typical for special ed but too special to be typical (or something like that)- I think it was in reference to my having the same thoughts on my son; do I want him to be the most typically functioning kid in special ed or the lowest functioning of the typical kids. I'll find out next year when he starts kindy, I guess. My DS is definitely not typical, there is so much that he does that is textbook autism, but he is losing his speech therapy coverage because he no longer meets the criteria. It's good and bad- he's come a long way, he still doesn't have typical speech..
There are success stories out there: https://yeahgoodtimes.blogspot.com/search?q=success+story
(make sure you read part 2, as well)
S-tuna and MirandaH- thanks for the support:) I can't see those stories on my computer at work but will take a look later.
Auntie- you're hitting upon exactly why I don't know how to feel. Am I supposed to think that my son was mis-dxed? Or should I be anticipating that when the social and educational demands increase over time, the problems will become more apparent? In the meantime, do we just sit and anxiously wait, while not getting services? Ugh, so hard. I can't say I'm sorry to have gotten the dx and thus received services, but of course we don't know if his progress was related to those services or just natural progression. Should I still think of my son as being on the autism spectrum? I know these aren't questions that can actually be answered, just testament to my frame of mind!