Anyone experience of anorexia in children with ASD?

[Peachy]

had a chat with APed yesterday and following from that, DS1 has been referred for assessment for anorexia. She will see im (but needs a new referral as he is discharged- it was ds3's appt) with CAMHs.

DS1 is nine and he and all his brothers (and his father) are slim build, but he has a fixation about fat people, exercises to excess and hides food to avoid eating; he has lost half a stone and at 3.5 stone has a BMI of 13 and is in 6 year old trousers.

School are being great- Head has booked himself into dinners so he can just observe how ds1 behaves at lunchtime (ds1 has no idea).

In children with an ASD, it can become a 'special interest' in food, calories and the way it affects the body. Or it can become a sensory thing where food's texture, smell, taste etc are so overwhelming or difficult that the child avoids eating at all costs. Or both. So yes, there's a link between the two things in many of us, and many girls with an ASD are misdiagnosed as having anorexia rather than an ASD.

Well worth getting specialist advice on how to work out what sort of obsession/interest/overload it is, and what might help with it. It could be that he's heard something on a tele program that he hasn't understood fully, and needs further correct information about how the body works so that he can adjust his ideas, for example.

Difficult. Very. For what it's worth, I lived with my anorexic mum for many years.

Peachy - when I was young - early teens - I was never anorexic - but had a very distorted body image - and would have liked to lose weight - as I thought if I lost weight I would be good at sport, and if I was good at sport I would actually have some friends at school . Don't know if that's any use or no use at all!

J is very similar and hasn't put on weight for over a year, though is growing in height at least.

For him, it's his limited diet with endless restrictions - no 'blemishes' allowed e.g. split grapes, everything has to be the same size and the same texture. Often the smell puts him off. Also, he hates having to sit to eat (the ADHD side of him) and hates using cutlery. Interestingly, he's OK if it's finger food and yogurts, so largely this is what he eats.

It's helped at school that he is allowed to eat on his own in a room with his TA. He hated the noise of the canteen and couldn't cope with it so ate nothing at school for 3 years. At home, we motivate him with him being allowed to pick the music we listen to when we eat and he gets stickers for his pocket money chart if he eats. He gets to choose what he eats, out of a list of 3 things.

He, too, gets a phobia of getting fat (he's a skeleton) and gets a phobia of eating in case he gets fat.

I have no useful advice except the things I've said, but I know how hard it is.

I have read that some experts think that many anorexics have undiagnosed Asperger's (particularly relevant to girls as less girls are diagnosed with AS than would be expected). My mother had anorexia in her thirties and now has eating habits that are v. similar to many of the children described on this site. As DS2 has AS and I see some similarities with my Mum I would def. say there is a strong link between the two. My Mum got ill as a reaction to anxiety causing events in her life (a lot of family illness and some marital turmoil) and gradually improved as her life got more calm and fulfilling and she found an outlet for self expression(she went to art school!). Maybe your DS is stressed about something, maybe he will find a new interest that will distract him from his weight obbsession. My older DS is a bit fattist and I keep an eye on him.

Thank you all

TC- ds does see sports as a route to popularity; he is good at them (came second in school talent comp for break dancing last week) and seems to think that means constant exercise.

GMSOGMC_ J and ds1 really are similar aren't they? I know it seems silly but I dont know many kids like ds1 (any) and its good to know he's not alone. Ds1 doesn't like blemishes, cutlery etc either and has smell issues. All factors I think.

AMber / ALly I had eating disorder in my teens and I think you're right, I do know I have AS like traits at the very least, its a control thing certainly. I'm not sure what ds is stressed about but he's growing up and quite oten expresses he doesn't want to, might be that simple? Stay small?

Peachy, could be that he fears change so much that he's trying to stay small, yes. So many different things can worry us sick - things that just don't bother other people at those points. Add to that an obsession with sports, and food sensory issues and it could all be a 'perfect storm', in my personal view. Luckily, if they catch this at such a young age, I think they can do a lot to try to re-guide him. Still hell for you as a family, though?

Amber you're right that it is a mix of things, tbh we've been lucky- ds3 had a PAed visit yesterday with the one that DX'd ds1 and she agreed to see him with just a GP kletter (for records): so really we've been gifted helpin a way many people are not (one of my oldest friends is probably dying from anorexia that has dogged her for decades with no help and has become so much a part of her life that we all accept it- I didnt even think of her until now sadly).

So it's a lesser Hel;l than it might be. Schol are on to it as well; mentioned to Head today and ds1 came back with a sticker for a 'surprise' eating up day they all had LOL- bless the Head, he's a good man.

also check what they are teaching them in pace my nt DD age 6 came home convinced she was fat after they had to write food diary and she got told she ate to much,chocalate,cake sweets full fat milketc
even ppoliced her lunchbox and removed items

this is despite scool dr beein concerned a sshe underweight and them knowing she has several medical issues that cause her to struggle maintain body weight

Yes, very similar - nice too to know J's not alone! One of Charlotte Moore's boys had similar issues in George and Sam.

The school healthy eating is definitely a concern- we notice that hios eating drops after that. His lunchbox was pulled because of unhealthy food but the '#white' bread was simply GF, the 'unhealthy' yoghurt soya, and the crisps one of the few GF CF foods that matched with what other kids ate (mind TA picked her own chidls lunchbox as perfect so not unbiased!).

I do think his intols add to the issue- we do have to watch what he eats. We've pulled GF exclusivity for the emanwhile and are looking at reductions instead, but te CF isn't an option as the associated diarrhoea etc will only worsen things.