Re: Newly Diagnosed ASD
posted at 5/26/2013 8:09 PM EDT
Stefani - just saw my post when I sat back down at the computer and I did a terrible job of answering you. I had so much pent up about the diagnosis process it all poured out in barely understandable English. Quite a rant!
So I am going to just list for you the signs/symptoms we have noticed. Some were slightly evident before three. Most were more obvious/disruptive after three. Let me say the confusing part is he does some of these once in a while (20-30% of the time), some of them a little more frequently, like 50-60% of the time, and one or two much more often. But nothing is ALL the time and he has days or even weeks, where the behaviors are not there or are not noticeable. But then, he will have a sitatuion or a few days where he is also textbook ASD. It was really hard for us to make heads or tails, until we realized that inconsistency of symptoms is diagnostic, it doesn't rule ASD out, in fact, it more likely rules PDD in when you have enough of these going on in different ways, inconsistently. I remember reading somewhere "inconsistency is the hallmark of PDD."
Over time, we observed: preference for routine, schedules, sometimes inflexibility (likes to get dressed in the same order most of the time); tactile issues (no shirt tags, preference for certain shoes, liked lots of heavy blankets); poor sleep; would not always respond to name or directions; liked to run/walk in circles at times; toe walking occasionally; sideways looking at certain toys while playing; hyperactivity; love of rough play, but not in an aggressive way; good vocab/rote memory, but poor word retrieval and use of expressive language (could tell you all about the days of the week, could answer what/when questions, but had difficulty with who, why, how questions); minimally imaginative play (might play grocery store a little, but would much rather build a lego boat then play with the boat when complete); loved lining up toys and had a set order, although he might change is order over time - in the Thomas stage this didn't stand out b/c all gthe toddlers line up choo choos, but when he started doing it w/ race cars and older kid toys, more noticeable. He can play imaginatively w/ his race cars, zoom them and make up stories, but it has to be on his terms and his play will be a mixture of function and imagination; He will occasionally care more about the parts of a toy than the whole (spin truck wheels and watch, carry around certain puzzle pieces) but this was confusing b/c he would also play typically with these toys; He struggles with eye contact in novel situations like 60% of the time; He needs a lot of prompting and reminding to get to a point where he more readily greets and says goodbye to people.... would still prefer to greet wtih a hug then eye contact and verbal hello; He will point and whine for things when he couldn't find the word; would be very vague or evasive in describing things his peers could easily talk about (talk about what they did over the weekend, what Santa brought); fast running "motor" in overstimulating environments; "ants in pants" often; agitation/hyperactivity wtih some overstimulating environments - hit face, cover ears, cover eyes, avoid crowds at house parties and BBQs. A little late potty training; He fists writing utensils rather than a "tripod" grasp and his coloring looks more like a 2yo. He doesn't avoid messy things like you hear wtih some kids with sensory issues, but he has to be cleaned the minute he is done with the messy thing. He has trouble controlling impulses and when a little younger, had poor risk awareness and would also dart off. That has improved greatly.
Anyway, this is everythign I could think of. Again, when I write it all out, some parts sound like a typical pre school boy. But there are also aspects that sound very much like textbook ASD, but for us, either we were in denial or they weren't all at the same time or happening consistently enough to notice a huge pattern until later. It was all happening on/off and inconsistently. At times it seemed age/gender appropriate and other times it seemed very off from his peers.
Whew - this was still long. I guess if you are questioning it, I am trying to help you NOT do what I did. I was in slight denial and I would also read checklists of lots of classic, textbook symptoms and think "Well he doesn't do that at all, so he can't be that severe." "Well he only does that some of the time" or "he does that once and a while, but don't all kids?" The checklists really gave me the misperception that these had to be symptoms happening all the time/consistently and very noticeable/disruptive. I think it made me under-report some of his struggles earlier on. I still remember those mandatory Autism checklists you do at the pediatricians and I am pretty sure there were times I don't think anything triggered before 3, at the most I checked off 1 or 2 things, that I could then easily minimize or explain away. My basic message is, as they say, "When in doubt, check it out!" Better to over-address now then miss something, in my opinion. A diagnosis can be reevaluated and taken away at a later point when/if the child catches up developmentally. To me that is far less problematic or worrisome to over treat now, than to miss the diagnosis at a very important developmental stage right now, when the brain is still forming, and lose the opportunity to intervene/teach/adapt early.
On a positive note, today I saw a friend whose DS is 2 years older than mine, similar diagnosis, but also with gross motor delay before 3. Even compared to last summer at 5, he was like a different kid today at 6. I don't think I ever even heard his voice or had a conversation wtih him before today b/c he just couldn't do it. He would mostly gesture or avoid at events like this in the past. Mom or dad would have to spend BBQs and parties in a seperate area, with lots of hands on activities and redirecting, special food, etc. After a few years of support through EI, public school integrated pre-school w/ OT, SLP, social skills, and ABA, he acted, played, and interacted on par with same-age neurotypical kids at the party today. It was absolutely amazing and breathtaking to see him spontaneously converse, interact, be flexible, knowing just how far he'd come in a few short years. Getting intervention early and a diagnosis early were extremely helpful for him. It was a helpful reminder that although it was hard to hear my son has this diagnosis and I feared "what does this mean", and although it's at times been overwhelming with all the evaluations, treatment appointments, public school IEP process, insurance advocacy, etc; I would rather get as much support possible now while his little brain is developing, to make it easier for him in the future. My friend's son is good proof of intervening early.
I wish you the best, Stefani!