Supporting a child with poor interoception

[Coffeeandbooks20]

Hi there, I’ve just posted this because there’s absolutely nobody in my real life dealing with issues like this at all. My son is on the waiting list for an autism assessment, and one of the biggest things he struggles with is interoception. He does not feel hunger or first, and doesn’t feel that he needs to go to the toilet until it’s urgent. He’s 5 1/2.
Because he doesn’t feel hunger, he eats very little and eats very very slowly. He’s underweight and we’ve been told by dietician to get as many calories into him as we can, desert three times a day, fortifying his food anyway we can etc. He hardly drinks, every day I have to count the amount of times he has a wee to make sure he’s not dehydrated. He can easily go eight hours without having anything to drink or going into the toilet. Over the summer holidays when he’s been looked after by other people, holiday club and grandparents, it’s become apparent how much support he actually needs. I try so hard every day to help him eat and drink enough, I feel awful when I see how skinny he is. Is anyone else experiencing similar with their child? Is it something they grew out of they got older?
He is on the waiting list for an autism assessment. He also has allergies and reflux, which complicates things further, he’s under consultant lead care for those, so we’ve access to a dietician and his growth is being monitored. He’s not actually a fussy eater, he eats a varied diet and plenty of vegetables, he just doesn’t eat enough of it.

Some find things improve as they get older. Others don’t.

It hasn’t improved for us. I have 3 teen DSs who struggle to eat and drink enough. Although it is complicated by a medical condition they have. They also have allergies and GORD and two have EDNOS, which is an eating disorder. They need prompting to eat and drink. We find a structured timetable helps. Three meals and three snacks a day. Drinks also at set times. One DS has overnight top up enteral feeds. Another DS rarely eats orally any more.

Toileting is another tricky area for us. One of my DSs needs prompting to go. We find a routine of going at set times. One DS doesn’t have a problem knowing when to go and the other isn’t toilet trained.

I think this is something others caring for him need to be helping with. Does DS have any support in school? When DS is next at holiday club, I would ask them to support DS with eating, drinking and toileting. How understanding are grandparents? I would ask them to as well.

Has DS had a sensory OT assessment? Not all ICBs commission sensory OT on the NHS, but if your area does, it is worth looking at a referral. Or looking privately if you can afford it. If DS has an EHCP, OT can be included in there too.

An assessment is necessary in this scenario. You should ask the dietician for alternatives of food which could be beneficial and liked by the child.

Mine do. It’s hard. We had some short term success with a wobble watch to help with reminders

Have you looked at Kelly Mahler’s videos on you tube and resources on her website. Some are free.
Look for second hand books by her too.

Thank you so much, this is so helpful.

The autism referral was done about a year ago, and we haven’t heard anything since, he doesn’t have an EHCP, and he’s never had any kind of assessment or session with an occupational therapist. At the moment we’re really kind of on our own with this.
I do keep reminding his teacher to please remind him to go to the toilet in the day, and for the lunch staff to check that he’s actually eaten some of his lunch before he goes to play, but this keeps getting forgotten about. He’s very intelligent and articulate, does well academically and has friends, so I think it’s easy for people just to see that, and not see all the things he struggles with.
I think you’re right, he really does need some kind of assessment. We’ve seen the dietician and their advice has only been about adding more calories into his diet, they haven’t really looked into why he eats so little. I will look into private occupational therapists to see if there’s anyone in the area.

I’ve never heard of her before, thank you for the recommendation!

It is hard. That’s a good idea. My son is obsessed with timers and alarms. We have timers going off all day, so something like that might work well for him.

I would request a meeting with the SENCO at school. The school should be providing support. It isn’t good enough that they forget. Does DS have a SEN support plan - they are called different things in different areas/schools but it is a plan that outlines DC’s needs and the support they require.

You can request an EHCNA yourself. On their website, IPSEA has a model letter you can use. If you do and the LA agree to assess, an OT assessment can be part of the EHCNA.

You can check if your ICB funds sensory OT. If it does, you can look at a referral, it don’t need a diagnosis.

If you want to look privately, you could look at Aniesa Blore, Melinda Eriksen, Diana Pierags, Jo Woods, Donna Podesta, Nikki White, Holly Fenton, Lucy White, Laura Jepson, Children’s Choice OT, Laura Graham, Mary Cunningham, Julia Metcalf, Alex Hermann, Shelly Reid, Sarah Chierico, Dawn Frith, Jenni Cromey. I have tried to include a range of people from across the country. Although many travel for good OTs.

Is DS still under the dietician? If so, I would be pushing them for more support. If not, I would go back to the GP. Do you suspect ARFID? If so, you could look at a referral to a specialist service.

Thank you so so much for all of this! It’s so so helpful.

No, he doesn’t have a sen support plan and I’ve never met the senco. I’ve only met with his teacher.

I’ve just had a Google and our ICB does not fund sensory OT so I think we’ll have to look into private OT. Thank you so much for this list of names!

Yes, he’s still under the care of the dietician. He’s under consultant lead care for allergies and reflux, and because of his faltering growth they’re keeping a close eye on him at the moment, so we’ve been seeing the consultant and the dietician every six months. No, he definitely doesn’t have ARFID, he actually eats a pretty varied diet and is always up for trying new foods which is great. He just eats very small portions incredibly slowly, every meal takes an hour, with my husband and I constantly encouraging him and reminding him to keep eating.

If you go down the EHCP route, an EHCNA can still include an OT assessment even if it isn’t available via the NHS and an EHCP can still include OT provision.

Hi OP, I have an autistic girl who is 13 and it has always been a struggle to get her to eat enough protein (her general eating is not too bad). However, it only dawned on me relatively recently that she can't actually tell when she's getting hungry. She seems to rely on external cues like school break time, so eating on holiday has often been a nightmare of hangry-ness.

I got her to try a glucose monitor for about a week this summer and it did seem to be helpful for her to actually be able to see her blood sugar falling and to associate that with feelings in her body.

Anyway, it's really good that you're onto this when your son is still very young. Something that has helped with my daughter is her getting interested in cooking. We were lucky as a club started at her school. Like many people, she's much more interested in eating things she's made.

I feel like my daughter's made a lot of progress since your son's age. This will sound random but a turning point for us was discovering Wagamama. She was drawn in by the chopsticks! I think it's a good place for some neurodiverse people as the food is always the same, it's fairly healthy and the foods aren't too mixed up on the plate. The staff often seem to be nice too. I'm gluten intolerant and they have a GF menu so it's been brilliant for our family.

I will post a link to the EHCP support thread.

www.mumsnet.com/talk/special_educational_needs/5484488-ehcp-support-thread-no-6?utm_campaign=thread&utm_medium=app_share