Teen dd, ASD and eating disorders

[Girliefriendlikespuppies]

So 14yo dd has developed an eating disorder over lockdown. She is on the pathway towards an ASD diagnosis, unfortunately some of the assessments have been postponed due to cv but will be amazed if she doesn't get a diagnosis eventually.

I'm just wondering if anyone else has experienced this with their ASD children and has any words of wisdom?

She's under camhs for the ASD assessment and they've now referred her to the eating disorder service. I've no idea how long we'll have to wait for her to see someone though.

At the moment she starves herself for long periods of the day as well as will obsessively exercise and then binge eats in the evening.

She completely shuts down any attempts I make at talking to her so I feel really helpless.

Last year we discovered that our DD (16) had an eating disorder. In the last 18 months she's been diagnosed with ASD too.

We (parents) had no experience with autism and it was not at all on our radar, despite DD once mentioning it in passing. But she never discussed it with us or asked for an assessment until it became an eating disorder and things ground to a halt.

We went on to the CAMHS waiting lists for everything (different "pathways" here in our health trust) and got to see people for her eating disorder first. That was a disaster for DD because she refused to engage, refused to admit she had an eating disorder. Their main focus was to monitor and increase her food intake - this involved us parents maintaining a food diary, encouraging her to eat 3 meals and 3 snacks each day (not an easy task by any means and not always successful each time). DD hated this, it took away her own control but CAMHS and common sense! made it quite clear that she couldn't continue and be/ become healthy on the 1 meal a day she'd restricted herself to. This only partially worked and DD hated being weighed and monitored.

However, some good things came out of it: anti-depressants were prescribed for her (suicidal, depression and anxiety. I'm not a fan of quick-fix medication but was desperate for anything that might help her), support for us parents and CAMHS encouraging us to pursue a private ASD assessment if we could afford it.

They've since signed her off their eating disorder service because there wasn't much they could do with her aside from the anti-depressants.

We managed to get a private autism assessment for her and she is having therapy following that. We (parents and DD) think the assessment and the therapy especially has been the most useful thing that's helped her, it has enabled her to understand herself better and (slowly) giving her the ability to talk to us about herself. I often feel as though I'm failing her with my own lack of ASD understanding - something I'm trying to rectify through reading books that DD recommends. It's a long and slow journey, for her and for us.

Like your DD, my DD often closes down and struggles to talk to us, she considers any discussion a confrontation, which she hates. She told me that she is more comfortable via writing, texts or letters because it gives her time to process and respond. It's not ideal, because you can just as easily misunderstand each other but it's a form of communication that she can cope with, so it works for us.

DD now usually eats 2 meals a day and various snacks in between, not super healthy (lots of crisps, biscuits and chocolates to keep the calories going in) and she is maintaining her weight and not losing. She now acknowledges that she has/ had an eating disorder, that it is her way of exerting some control over her life, she still struggles to eat the amount that she does.

It took 4 months from the GP's CAMHS referral to see someone in the eating disorder service, 16 months before she reached the top of the autism waiting list. If there's any way, I would try to find someone privately to help your DD.

In the meantime, whilst on waiting lists we were offered some help as parents, on how to support our DD - perhaps that might be available where you are?

Hi Chan thank you so much for replying! I feel really alone with all this atm, it's just dd and I so no partner to talk things through with.

So my dd now has an appointment with the camhs eating disorder team next week which I'm really relieved about. I'm hoping she will listen to them, she ignores anything I say! She is also under camhs for the ASD assessment which I'm hopeful will be completed this year. Everything was delayed due to Covid.

The situation with food continues to be rubbish, she now eats one tiny lunch and dinner with milk and biscuits in the evening. Tomorrow she's going to the drs for a blood test, ecg and weight and height.

It's so stressful and I feel completely helpless ☹️

@Girliefriendlikespuppies,
Try posting on F.E.A.S.T - it’s a forum similar to mumsnet just for parents of eating disordered kids. I went on there before we started treatment and the support and practical help was invaluable.

Also worth checking out BEAT - they offer loads of resources and also a peer mentoring scheme where an experienced parent ‘buddies’ those who are currently going through it and offers support.

We’re in a similar situation to you - DD14.5 developed eating disorder over lockdown, periods stopped, (although not actually underweight) Last two weeks we’ve been doing Family Based Treatment which is similar to what the other post-er mentioned, where the parent take over responsibility for all intake.
Worth ordering Eva Musby’s book now or looking at some of her stuff on Youtube, as the emphasis of the treatment is all based on trust. Then when CAMHS suggest it as treatment, you’ll be prepared. It was a VERY steep learning curve for me, entering the eating disorder world, but she put on 3lb in the first week so things are going in the right direction.

CAMHS are doing an ASD assessment alongside treating the food issue. Keep on mentioning the ASD question to the eating disorder clinician. Our CAMHS person is bringing in the psychiatrist to our next meeting as he wants the eating and ASD to be looked at together. It’s worth asking CAMHS if they could conflate both ASD/eating into one team rather than two separate treatments/assessments going on.

Remember that you know her better than anyone, you’re part of the ‘team’ that will be assessing/treating her, so be confident with CAMHS. This might sound strange, but so far most of the CAMHS appointments have been me and the clinician, with my daughter only coming in for 5 mins at the end. (Next week we’re doing one in person). They seem to understand that with things like eating it’s very difficult to get a realistic picture from the young person themselves- after all they seem perfectly justified in how they’re eating (my daughter still doesn’t think there’s a problem, despite periods stopping)

This is extremely stressful, and you’re going through this as a single parent so you will need to bring others into the journey with you. You can do this, and it will get better. These are tough years for our daughters, but they can get through it.

Thank you hola our dds sound really similar!! That's interesting re the ASD and eating disorder assessment and I def will mention that at the meeting next week.

When you say you control what your dd eats how does that work if she refuses? I can't imagine dd taking any notice of me telling her she has to eat breakfast/lunch/snacks etc. Are there consequences to not eating what she's meant to?

My dd has exactly the same attitude as your dd in that she does not believe there's anything wrong with what she's doing and it's totally normal 😕

This Family Based Treatment (or Maudsley) basically works on the premis that your child isn’t capable of making good choices about food, so you (as a parent who has been adequately feeding your child for their whole life) temporarily resumes control. In the first instance this is to regain the weight lost as soon as possible and then after that it’s so that you can ‘teach’ your adolescent what an appropriate amount of food looks/tastes/feels like in your body (I don’t know about your DD but mine has become so absorbed in this online world where chia seeds are good but cheese is bad, that I think she’s lost touch with reality - her big anxiety isn’t actually wanting to be thinner, but not wanting to put on weight - but she doesn’t know how much she needs, so goes way under).

I’d really recommend the Eva Musby book - it’s quite expensive and quite lengthy but you can just read the chapters that are relevant for now. It’s very down to earth (she’s a parent) - and very practical.

This FBT approach is tough going on the parent and the child but research is showing that it is a very effective method.

To begin with I used the CAMHS clinician as the ‘bad guy’ who was suggesting this treatment (have your DDs periods stopped? Having this physical symptom as the reason we’re doing this has help my DD accept it despite her not thinking she has a problem). The first few days were v v strange, lots of resistance, but she’s settled into in and is accepting it for now. It’s hard work.

It’s worth researching it before you chat to CAMHS - and perhaps asking for time for you to talk to the clinician without your daughter.

The weeks after I’d realised there was a problem, before we had a plan of action were v v hard - I felt helpless and scared. So even though FBT is intense (many people, myself included, take time off work to establish it) - it feels v v positive overall.

We’re only about 2 weeks ahead of you so by no means an expert on this!! Think you use any punishment/coercion you can to get food eaten (although we actually haven’t had to do that)

Hang in there.

Thanks Hola, yes dds periods have stopped. Dd is still maintaining she's fine and was talking today about when her blood tests come back that will prove how healthy she is 🙄

Really interesting re taking over control of the eating, I really like that idea but can't see dd going with it at all...

Our dds do sound so similar, my dd has said she doesn't want to lose weight but is scared of gaining weight as well.

Hi thought anyone still here might like an update, we had the Camhs appointment today. It was long and quite upsetting really, dd has been told she can no longer do any cardio type exercise. That did not go down well.

Also as you all said I've been put in charge of her food. She's still saying 'you can't force me to eat' etc so I don't think this is going to be easy at all.

Not sure how it's going to work with me being out of the house at work some of the time as well.

They did say to her if this doesn't work ultimately she will end up in hospital, I think that's the only thing that might motivate her to try and eat more.

So things here are really tricky, think I'm going to have to go off sick from work next week so I can supervise dd. She is fighting me all the way with my decisions re her food.

I feel like shit tbh, like I have majorly screwed up this parenting lark. Dd said some unkind things Ystd about not caring about me and I spent most of the afternoon in tears.

It's just so hard.

@Girliefriendlikespuppies - so sorry to have missed both of these updates. I’m so sorry things are so tough.

You need to get yourself over to FEAST
www.aroundthedinnertable.org/?forum=136439
(My username on there is WilliamWallace so come and find me!)

The women/men on there are strong and have been through all that you (and I) are going through and worse. They have the mumsnet-style forum and also chat lines. Women from all over the the world, so people answer your posts day and night.

You’ve not failed, you are doing a brilliant job, but this is one of the toughest things you can face - everyone says the very first weeks are some of the hardest you’ll ever face.

Is there a possibility of taking more than a week off? Compassionate leave?
Sorry again for missing your updates -

Thanks hola it is so tough, I will have a look at the other forum.

I don't feel like things have improved much tbh, I put breakfast in front of her and she goes mad saying she's not eating it. This morning she said she didn't want the choice of cereal I had picked so she took it back to the kitchen and swapped it for another cereal which obviously defeats the object.

I'm going to speak to my dr tomorrow and see if they'll sign me off for a bit.

I've seen your other thread on the FEAST site and signed up. Reading some of the replies it looks like I'm going to have to get much stricter 😕

It's difficult because dd does eat well at dinner time, so eats her dinner, eats pudding and then eats half a packet of biscuits with a glass of full fat milk. But during the day every single meal or snack is either rejected or the cause of a lot of stress!!