Does my teenage son have an eating disorder?

[HFG37]

He is a very skinny 6 footer who weighs about 8 stone 4. He has always been either borderline or actually under weight. GP has said he seems healthy so no problem. He has never been a good eater. He turned horribly fussy and food avoidant overnight when he was a toddler, many aspects of which are still around now. He will eat new foods these days (so long as it's his decision to do so, not something being forced on him,) so the issue these days seems more that he has no appetite. He says he can skip meals all day and just doesn't feel hungry. When he does eat, he has tiny portions and always leaves loads. He can on occassion stuff a huge pizza down his neck so clearly he does have the ability to eat!
There are other aspects to it. Firstly, over the years he has definitely used not eating as a way to 'punish' me if I've pissed him off eg. I say dont take your meal up to your room, he says well I wont eat it then. And he wont.
Also, he does seem super sensitive to changes in food. eg he can tell the difference between a lasagna I've just made and served up, and the leftovers I've frozen, reheated and served up. He wont eat the latter. He sometimes will say that the taste of a branded product has changed eg. he says that rice crispies occasionally change slightly from box to box, one of those 'flavours' he wont eat and the whole box goes in the bin.
Recently, he says he wants to put on weight...but can't develop enough of an appetite to eat more. He does seem to have an interest in food, following tiktok foodies etc....just not in eating it!
Anyway I figured that people on this board would know what they're talking about with regard to disordered eating. Would anyone have any comments or insights about my son? Anything I could do to help him as he goes into adulthood? Should I talk to anyone about it?
Any help massively appreciated x

If he’s using food to punish you, and is underweight, and can go a full day without eating, it definitely sounds like some sort of vaguely disordered eating. Might be best to try to take the pressure off, and to focus on appreciating and enjoying food in a social environment. How is he when friends are over? Does he eat with them? What about a family meal in a restaurant?

My DSis has had issues with food in the past. She can go totally off food and barely eat for a week when she’s stressed, until she’s badly dehydrated and dizzy. At her worst, she would throw up if she had a few sips of water, because her body was so unused to having anything in it. Not eating breeds low appetite. What helped was getting her into a social setting where she felt a bit of pressure to eat a few bites and to keep things down. When she was in crisis, I’d bring her out to lunch with my friends, and we’d laugh and chat (around her… even if she didn’t participate much) and some food would go into her. Gradually after three or four days of bringing her out to eat, she’d be able to manage food again and eat a full bowl of soup at home, then a full meal a few days later. She’d regain her appetite through relaxed exposure, basically.

Sounds like your DS isn’t in as dire straits as my DSis was, thankfully, but the same approach over a few weeks could help.

Also - therapy. Why not. He doesn’t have to be in crisis for therapy to be helpful.

@UpToMyElbowsInDiapers Thanks, he's actually probably worse in family/ social situations like cafes since I think he feels more out of control over what food will be available. With mates, he just eats pizza, so thats easy enough. Yeh, I have tried to take the presssure off...when he refuses to eat now I just breezily say thats fine. I used to find it incredibly stressful when he refused food!

Sorry to hear about your DSis. Hope she is well now x

Sounds like he had ARFID as a young child and still has issues now as a teenager. Based on his BMI he would be classed severely underweight so not sure how his GP has fobbed him off as being healthy. At the very least he should be referred to a dietitian to help him with food issues and weight gain, and they can refer into a specialist eating disorders unit if they think this is needed.

@WDWY Yes, I always suspected ARFID! But as I said, GPs have been utterly dismissive about my concerns over the years so I've never had a proper conversation about his eating.
I have wondered about trying to get some kind of referral for him..but part of me worries whether doing so could make it even more of an issue than it is, since historically, the more fuss i made the worse he got. He is a very controlling child!

I’m deeply shocked a doctor would for off a six foot person who weighs eight stone. I mean this gently but he must look skeletal.

people on here can’t diagnose him op and ignore anyone who tries to, but if urge him to see a doctor again, as something is wrong. He’s incredibly underweight.

How old is he op?

DS is 18 and has a diagnosis of ARFID. Even when he was significantly underweight and physically unwell. We couldn't get any help.
In the end we managed to get our local CCG to fund some therapy with a specialist clinic out of area. That was a huge fight to get.
Now he's an adult who is still underweight and with restrictive eating, we are without support as our local eating disorders service won't treat him.

@Begoniasforever Just about to turn 17. To be fair, I haven't asked a GP about his weight/eating for a very long time due to previous dismissal.

Thing is, he is a sensible boy in many ways, has some insight into his habits/behaviours. Hence this thread given he said today he cant eat because he has no appetite. Is that GP worthy?? I really have no idea anymore!

@Punxsutawney Sorry to hear that, its so hard when you child wont eat and theres no help or advice😪

HFG37 My Ds is autistic and struggles with interoception, so he can't always read his bodies signals for hunger. That is not unusual in people that have ARFID.

Begoniasforever You would be surprised how little support there is for an eating disorder like ARFID. DS was so unwell due to lack of food he could barely get out of bed. I couldn't get any help, from CAMHS, the eating disorders service or the GP. Ds's weight for height was very low but because he wasn't anorexic, nobody was bothered.

@Punxsutawney Interesting. My other DC has ADHD (probably me too tbh) so we do have some ND in the family. Thats a good angle to look into, thanks.

OP, it does sound as if he has perhaps some condition that affects his eating, if not an actual eating disorder.

There are so many complex manifestations of ASD. The ‘punishing you’ and having to try things wholly on his terms with no pressure made me wonder about Demand Avoidance.

In a way hunger/ the need of your body, is a demand.

Do you think he’d be open to hypnosis? I’ve read plenty of success stories with ARFID. If he’s now telling you he wants to gain weight, what about complan type drinks, doesn’t address the reason for the lack of calories, but does add calories daily

HFG37, both Ds and I are autistic. I was anorexic as a teen, so there is definitely some connections with ND and eating disorders.

When Ds was having treatment. We were told as he was very underweight that 'all food is good food' and to not worry about conventional healthy eating.

He was also prescribed fortisip as a supplement drink, he didn't like they taste of it....the joys of ARFID. But he was open to milkshakes that we could add supplements to. You can add things like double cream etc.

I would definitely consult your GP if you remain concerned.

Op you need to get him along to a doctor, he’s severly under weight, it will impact many things due to lack of nutrition,

i put it into the nhs calculator and he’s below the 1st centile for his age, height and weight. That’s not a typo. He’s below the first centile.

you need to get him help, if he was an adult his bmi would he 15.7. In an anorexic that would be classified as severe. Below 15 is extreme. At 13.5 it can lead to organ failure. At 15 they hospitalise. He’s at 15.7

he needs help.

@Begoniasforever if a child is under 18, they don’t use BMI, as they’re still growing.

@HFG37 it does sound very much like ARFID.
My DS is almost 18 and under the ED clinic. He was diagnosed as autistic in 2015 and we have known he was a selective eater since weaning.

You could ask a different GP for a CAMHS/Community ED clinic referral due to his very low calorie intake and ask that he has blood work done too.

There are very few areas in the UK that are specifically ARFID trained but a lot more health professionals now know about it, at least.

In the mean time, you could check out the ARFID uk website for loads of helpful info.