My son has tested negative for autism twice but it doesn't sit right with me
Sorry in advance for how long this is. My son is obviously neurodivergent and has stumped everyone and I’m just trying to get answers so I can help him because his school isn’t.
My son is 6 and in kindergarten. While he’s extremely smart and appears neurotypical to others, he has always had some delays/processing issues that have never fully been addressed. We went through Early Intervention when he was 2 and he did speech therapy but their evaluation showed no autism (although this was during covid and over Zoom, they never saw him). He said his first word at 8 months but from there on out, he would say one word, then regress and say nothing again. He struggled with eye contact, zoned out frequently, didn’t respond to his name, and was very much in his own little world. By his second birthday he still only had 1-2 words at a time (aside from letters). We decided to stop speech therapy for a few weeks, and during that time he woke up counting backwards from 20 and his language exploded. He was caught up to his peers by age 3 although he had a speech impediment.
Right before he turned 4 we got him evaluated for OT and they found pretty significant adaptive skill delays as well as some interoception issues, for example he struggled to potty train because he couldn’t feel his bladder when he had to go. He actually held his bladder for up to 24 hours at a time to the point where he gave himself nerve damage. The only way he could pee was if he pushed his bladder up against the corner of the couch, it was so stressful. He didn’t use the toilet until after his 4th birthday and lots of OT. His OT did another full evaluation and again assured us he wasn’t autistic and didn’t meet criteria for anything. To this day, he still has to be reminded to use the bathroom because he just can’t feel it. He comes home looking 8 months pregnant because he will not pee at school and drinks like a fish. He chugs water all day long, I think it’s a sensory thing, but he also won’t ask to refill his water bottle once it’s gone so he goes half the day with no water at all because he chugs all 24 ounces in the morning. I’ve asked the teacher to remind him to go when everyone else does, and she just said “we have designated time for kids to go to the restroom if they need to”… I get that, but HE personally needs to be told to go.
He has always been a slow processor. When you ask him questions, there’s a very long pause. Sometimes he answers eventually, sometimes he doesn’t. It also takes him a while to adapt to new situations. He isn’t anxious or anything, he just needs a few minutes to process what is around him and during that time he just stands there and zones out - nothing you do or say gets through to him, he is truly in his own little world. He wanders off at parks and he’ll walk straight into traffic even if you scream his name over and over for him to stop. and even got lost on a field trip even though my mom went and only had him to watch. His preschool teachers called him The Absentminded Professor because in their words “he’d just be thinking about volcanoes on Venus and not looking where he’s going in line”, if that makes sense. Still to this day, any time I see him in line he’s always a good 5 feet behind the person in front of him and everyone is trying push him along.
He has extreme hyperfixations, starting at a very young age. At around 18 months he became obsessed with letters. He carried around a bag of them everywhere he went. He knew all letters, capital and lowercase, by age 2 and could put them in order. He memorized a bunch of sight words. He didn’t speak anything meaningful, he only said letters and sight words. He’s had quite a few obsessions over the years where he fully immerses himself in them and it is ALL he talks about, then something new will come along and he will obsess over that. Cars, logos, superheroes, Mario, Pokemon, etc. Everything he says or does is related to his obsession at the moment. The only one that ever stuck around was space - he knows more about the universe than most college students.
I could go on and on in detail, but I’m just going to list out some other concerns I’ve brought up:
-No sense of danger
-Doesn’t respond to body language, social cues, tone in others
-Lined up toys obsessively until about age 4
-Barely slept as a baby, never showed sleepy cues, wanted to be awake and stimulated constantly
-Very strong sense of justice
-Strict rule follower and will have huge meltdowns if rules are changed (ex, board games)
-Still struggles to dress himself
-Struggles with impulse control, but isn’t hyperactive
-Interoception issues- struggles to know when he is hot, hungry, in pain, etc.
-Extremely sentimental and affectionate, needs constant reassurance and gets his feelings hurt very easily
-Very slow reaction times
-“Autism accent”, his speech is more like a little scientist than a 6 year old. He also over pronounces words (enunciates every consonant)
-Enjoys being around other kids but struggles to initiate conversations and make friends. He usually just follows other kids until they include him, and then he’ll just start spouting off facts about his current hyper fixation.
-Gets overstimulated easily and needs a lot of down time to recharge after going out anywhere.
The most confusing part? Apparently, he does none of this stuff at school. His teacher and principal act like I am a crazy helicopter parent any time I try to ask for any sort of accommodation (which isn’t that often, I gave up months ago). They have lost him 6 different times in the carpool line because it’s always chaotic and he says he can’t hear where they’re telling him to go. On more than one occasion they put a totally different kid in my car (he was still lost inside the building and they were running around screaming his name), and blew me off when I messaged the teacher about it. I tried to get an IEP, as just a few months beforehand we had a private speech and OT evaluations where they told me he was behind, but when it came time to the meeting they said he was perfectly fine and a “model student”, and I “shouldn’t be worrying about him”.
I have talked to his pediatrician about all of this. She agrees he is neurodivergent in some way. She wanted him to get evaluated by a research hospital where they can take a multidisciplinary approach since we don’t know what it is. She didn’t want them to focus on JUST autism or just ADHD. I was on the wait list for a research hospital for months and they never called back. Eventually I took him to a private practice, where they gave a stack of paperwork to his teacher who just wrote he was “average” for everything, which skewed the results. The teacher is another story, his class is full of special needs kids and I truly believe she didn’t want another one on her hands so she didn’t answer truthfully. The psychologist told me that based on mine and my husband’s answers, he would have inattentive ADHD. But because he wasn’t distracted during her evaluation (where it was quiet and calm), and because the teacher said he was perfectly fine, she couldn’t diagnose it. She said he has a high IQ, and that sometimes smart kids learn to mask really well. She said she wasn’t comfortable giving no diagnosis as he was obviously neurodivergent in some way, so she just said he had “unspecified neurodevelopmental disorder” and to have him tested again when he has a new teacher. I went back to the pediatrician with this info and she was again adamant that we get in with a research hospital, but UNC never called us back and Duke won’t even put us on their wait list until we submit the paperwork from his teacher, and obviously that will be a waste of time and skew the results again.
Sorry this was so long. I am just so frustrated and want what’s best for my kid. I don’t care WHAT he has- or doesn’t have. I just want to keep him safe, and I want the school to give basic accommodations such as reminding him to fill his water bottle (he’ll just go thirsty instead of asking), use the bathroom, and keeping an eye on him because he is known to wander. I'd like to be able to trust they'll keep an extra eye on him during a field trip, fire drill, or god forbid an emergency. They WILL NOT do a damn thing unless I have some sort of diagnosis from a specialist. I also want to know how his brain works so I can help him gain some independence and regulate his big emotions.
Has anyone else been in a similar situation? Did you ever end up getting a diagnosis of anything, or should I just give up at this point? Should I keep trying to get in with the research hospital that can look at the whole picture or should I try another private practice that only specializes in ADHD/autism? Am I going to still be dressing and bathing my kid and keeping him from walking into traffic when he's 30? Looking for some reassurance lol.
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