Hi, I’ve posted here and there but I’ve never written out our whole story, and I’m struggling. I really have so many questions that I’m not even sure what the “right” questions are, but I’m hoping some moms will be willing to help me sort it out. I love my son beyond measure, and like everyone here I just want my child to have a happy life and to be sure I’m making the right choices and doing everything possible to make that happen.
My concerns about my incredible, now 27-month-old son began on Day 1. As a newborn he had no interest in faces. There was no eye contact, and none of that hard-wired imitation that most infants do.
My concerns were brushed aside by professionals and friends alike for many months. I finally got us hooked up with a local research/clinical institution and found professionals who validated my concerns. We were placed in a research study that ended a year ago but that included regular, ongoing assessments.
The last assessment was in December. Last week (don’t ask) I finally learned the actual results of his ADOS: he met all the cutoffs for autism.
A couple of weeks ago, we saw a developmental ped at the same institution. She said she did not want to make a formal diagnosis at this time (and I wasn’t expecting or asking for one), but we will continue to see her. She observed that he has a “mixture of concerning and reassuring behaviors.”
Meanwhile, he is a joyful boy, very verbal, engaging, loving, gentle, persistent, pretty adaptable, good sense of humor, and a good eater and sleeper. He has been described as charming, interactive, and charismatic.
Also, while his eye contact with me is OK, it’s still not great with others. His joint attention/referencing is not good. He uses some gestures but not as often as most children his age typically do. He has both restricted interests and some restricted play (more on that below). He reverses pronouns (you and I) and has some echolalia, mostly delayed rather than immediate, though also plenty of spontaneous, appropriate, and very communicative speech. He is very stressed out by unfamiliar situations (eg, the testing environments). He pretty much refuses to say hi to anyone and gets upset if I talk to someone or hug someone. He has a few sensory-seeking tendencies but really they’re pretty mild even compared with many toddlers I see, with the exception of his terror of the vacuum cleaner
One area where I would love some suggestions is whether anyone has found strategies that have helped with some of the areas of concern? I want him to feel valued, not like he’s doing something “wrong.”
But another question that confuses me is, how much should I be trying to address the concerning areas, versus focusing on his strengths and building on those? Will it be stressful for him to try to increase his joint attention, for example? But without improving it, will that set him back in terms of being prepared to learn and grow?
Another question is around the accuracy or precision of the test results, and just overall what do they really mean? When he is stressed out, as he was during the assessments, his spectrumy behaviors increase significantly. But that’s probably true for anyone being assessed? So what offers the better picture or prediction of where he really is – the test, or his everyday environment?
And, while I have always been the one with the concerns and so I expected the test to put him on the spectrum, I admit I was surprised that it put him square in the autism category, as opposed to ASD. But maybe I’m misunderstanding what that means? The reason I was surprised is that his communication seems so strong that I always thought he would be considered high functioning, whatever that means. (Harper Rose recently posted a link to https://www.facebook.com/autismdiscussionpage, for which I’m very grateful, but even after reading it I’m still confused.) I’m still not clear on the relationship, if there is one, between where you are on the spectrum and where your functioning is, or really what either of those designations really mean. By the way, another test they used found his expressive and receptive language both in the very high range.
I guess I’m wondering what all of this predicts for my son in the future, and maybe that’s something that can’t be known right now – I’m ok with that, but trying to sort out what is most important for us to do right now.
In terms of interest and play, he has a very strong interest in cars, trucks, and trains. If there is one around, it’s like he HAS to play with it, almost like a compulsion. He drives them back and forth and does some imaginary stuff with them, like has them talk to each other, though that’s pretty scripted. He also looks at toys closely. It’s much more challenging to transition him from playing with vehicles than from playing with other toys. Taking turns with vehicles is also much more of a challenge. In the last couple of weeks, his fantastic daycare provider and I agreed to experiment with removing all vehicles from her house and ours. He has barely asked for them, and he seems happier and his play has expanded greatly. In particular, he has become much more interactive with his peers at her house. But, are we making it worse in the long run, creating a forbidden-fruit situation? Will he just transfer his intense interest to something else? Is it “bad” to have intense interests?
One of the interventions we are considering is occupational therapy, to help diversify his play. Can anyone explain how this works?
I am going to pursue anything and everything for him that feels right. I’m also self-employed and buy our insurance myself, and under our particular plan this probably means paying a lot of out of pocket. I don’t want this to be any kind of barrier, but at the same time it’s our reality.
My deepest gratitude to anyone who has read any of this. The stakes are so high, and this feels so overwhelming. It helps just knowing there are other families out there who know what I’m talking about. Thank you.