Autism & eating disorder?

[TreacleMoon123]

Posted here for traffic.

My 16yr old dd has autism. She gets low mood and anxious in new situations and also doesn't attend school due to school refusal.
Last year she went through a spell of not eating and terrified to put on weight. She lost alot of weight at that time and was absolutely miserable and unwell. Eventually we got an appointment with CAHMS who discharged her and said the anxiety, low mood and 'disordered eating" were all due to her autism. They referred to a disability team who felt they couldn't really help either.
She eventually got through all this and started eating normally again.
Now she has told me she is really struggling with it again. She will only eat one meal in the evening of 2 chicken goujons and pasta which she weighs. She also has one coffee per day. She is pale, cold all the time and has no energy
I've made a gp appointment and im trying to get a private psychology appointment for her.
Is there anything else I can do to help her in the meantime? I'm worried sick about her. Would love to hear from people who hsve been through similar or who can give any advice on how to navigate through this.
We live in Ireland so the services are probably different.

My dd was the same , she is 21 now and eats most things but not regularly . At one point she wouldn't eat anything .
Have you been referred to eating services ? Although they are more than useless and juts tell you to make her eat regularly etc ( as if I hadn't tried 🤦‍♀️) ..

Glad your dd is doing better. No, we haven't been referred anywhere yet. Will have to wait for gp on Monday.
It's awful watching her go through it. She cried for ages today because she was hungry but just couldn't allow herself to eat.

Similar to my DD.

After many attempts at different things what worked for us was by asking around I found a personal trainer who was young and had a reputation for working well with teens. They started so so slow, sometimes they chatted and did stretchs more than trained. She connected with DD in a way that other professionals and myself hadn't. It helped that at 15 DD was wanting to change so willing to listen. She helped DD see food not so much as a good or bad thing but as being on a spectrum from what she needed to live, what she needed to get healthier and what was actually food that was fun (not always treats but just fun to eat notably hello kitty dumplings). Some days she only copes with what she needs to live, sometimes are more fun.

I don't put this here to say "get a PT" but to say that some times it's something or someone left field that might work. Obviously go to see GP and get whatever professional help you can get but maybe explore locally what you can find. I found other parents and people very willing to share recommendations.

I haven't got any answers but just know from my reading that people are just inrecent years realising how often linked autism in girls and eating disorders are. I have an aitistic teen and worry that her odd eating could develop that way hence the interest (and being autistic myself I've then gone and read a lot about it.)

I think it's really difficult as counsellors may have experience with eating disorders or autism but you really need someone with experience of both.

Sometimes it starts as a sensory thing (don't like touching food/certain textures) and spreads (one of mine is like this) and sometimes it's a fear of being sick (my other is like this). It can be as much around control (when autistic world is overwhelming) as it is about any desire to be thin.

There might be an eating disorders service the GP can refer to?

Otherwise you know that thing about overwhelm and all the bits that can lead to it? As a mum id be tempted to not focus on the food (just make sure food they like is available at all times and offer to get what it is they fancy if they ask) but instead draw away from it and focus on whatever fun things you do together. Or focus on things that reduce stress and overwhelm. Reduce transitions reduce anything that leads to overload, make the room nice, find other positive sensory things etc. (But do also seek gp help!)

It must be so tough. Our DD is on the Pathway and has ARFID but most HCPs we come into contact with have very little understanding of ARFID and assume its anorexic nervosa, which in my DD's case it very much isn't.

Just wondering if you've spoken to any of the ED support services?

Yes I was wondering about ARFID as it does get lost in amongst the other eating disorders.

Sometimes dieticians can be good too.

Thanks for the replies and advice.
She tells me the reason she won't est is because she is scared of weight gain. Would that come under the umbrella of ARFID?

Possibly not but there is a higher incidence of eating disorders amongst autistic girls so yes do keep pushing doors for support.

I don't know, my DD's food issues have never been about weight.

Yeah I've been trying to read up a bit more about it. I never realised there was a link.
Hopefully gp can get her referred to appropriate services

Are there any eating disorder charities in Ireland? If so, I'd ask their advice. Read up about symptoms of the different eating disorders. See if your daughter fits into any of them. Also, it's essential your daughter sees a GP. I could be wrong, but being pale, cold, and tired could be signs she is Anaemic. I think having blood tests to check on iron levels would help, as she may require iron tablets. It sounds like she has some sort of eating disorder. I have an eating disorder. I am a Binge Eater currently in recovery. I would question ARFID, as she sounds restrictive in the foods she eats.