My huge child - opinions pls

[Thepumpkinpatch123]

I’ll preface this by saying I’ve contacted various people like GP , school nurse etc and all seem somewhat disinterested.
it’s strange because I follow a few mums online with autistic boys who also happen to be abnormally tall and heavy with similar ‘baby face’ features and I can’t help thinking there’s a gene involved.
DS has SPD and ASD with a high IQ and pretty good emotional intelligence and social skills so he passes for NT much of the time , we just have issues with certain stimuli and some obsessive behaviours which includes food. We use simple tactics like foreshadowing , noise reducing headgear and can pretty much enjoy all the usual stuff kids enjoy. His quirkiness extends to an old man type stubbornness and grumpiness and pedantry which is amusing and endearing most of the time.
DS is just 6. He wears size 2 shoes and is 140cm, he’s a little over 6 stone. This of course is crazy big and he’s difficult to manage , he’ll steal food if we deny him extra. He could finish a multipack of crisps or family pack of cakes on his own, he’s given himself he squirts from gorging fruit before…I’ve stopped buying this stuff because he’d get aggressive if he knew we had it. He’s like a Labrador and will take cereal or even dried bread to just munch on. He’s not too bad at school though he’s ‘famous’ for taking seconds to finish his food before demanding extra. He’s good at a sport, and gifted in a creative hobby and is, I think a good looking boy, he’s almost never sick. But I’m scared for what the future holds for him, especially when I’m not there to manage his nutrition when he’s bigger.
been awaiting paediatrics appointment for 3 years.
family genetics are very tall people but not fat.
anyone know anything about this stuff?
many one else had a giant grow up to be normal?

Are you thinking it may be Prada Willi Syndrome @Thepumpkinpatch123?

@SiouxsieSiouxStiletto I did look into this, as some things seemed to fit . But he has never been hypotonic, the opposite infact, he was a described as having excellent tone at birth, then sat ,crawled and walked very early. His eyesight is good and he’s heavy and tall but strong with it, as in he’d not look out of place in a rugby team. His thick legs make him look in proportion, just very very chunky. So I really can’t decide if he has an anomaly/ genetic quirk related to his ASD DX, or he’s just full of Celtic and Nordic genes and destined to be a really big chap. I’ve mentioned it loads of times at appointments and they’ve scanned him visually from top to bottom and said he ‘looks very healthy’ ‘just likes his food’ etc but this isn’t a comfort when I’m battling constantly to control his eating and get him fit.

I'm out of ideas then sorry but you might want to find out who he's been referred to and chase up the appointment. Make sure that they know that you're available for short notice appointments. It's worth a try

@SiouxsieSiouxStiletto thank you I think I will. It’s important. His school is very health orientated and some children get extra swim sessions and free access to their healthy brekkie club and cooking lessons because they’re fat, my boy isn’t included because his DX means they have developed this culture of ‘at least he’s happy and learning’ so they don’t even force him to do PE ! He only does the sport he enjoys and gets to sit various other things out. It feels a bit like they’re trying to appease him for an easy life because if you gently pressure him to try something with plenty of foreshadowing he’ll usually give it a go and enjoy it! I’ve had him gorge scrambling, hiking and all sorts before. But if he says ‘no’ to tennis they let him have a nap or read a book 😞

I don't have any SN children myself but worked in a daycare centre for 13 years with teenagers and young adults with various needs. I have noticed exactly what you are saying about DS. Many of the young men with ASD were particularly tall, broad built, and large appetites. Not necessarily fat, just big broad men. It did make me wonder if there was a link there somewhere. They all had sensory food issues, which meant they didn't have the most varied diet and liked 'beige' food. Don't know if this is helpful, just saying I know where you are coming from!

@sleepymum12 thanks for this! I at least know I’m not imagining things now when I see these chaps and think ‘gosh you could be brothers’ it’s the shape of them and the delicate features, almost childlike beyond their years. I especially notice the fair complexion boys seem to all look like they could be brothers or cousins anyway. I suppose it’s possible the way genes travel through generations that they share something other than just ND traits, I’ll perhaps dig around for some research a bit deeper while I look into therapy and techniques to try and help him with his weight.