to think my ASD daughter is verging on having an eating disorder 😢

[Confusedallthetime0]

13 year old daughter is having major food issues.
It all started becoming a real problem in the summer when she became vegetarian but has survived on a beige diet ever since.
She won’t eat any vegetables but has picked at fruit on and off.
Blood tests were low in Vitamin D and slightly low thyroid function so on vitamin D tablets and will do a repeat blood test in 6 months.
The problems have really stepped up since Xmas where she will refuse everything even though she had physically picked them out in the supermarket, the reasons range from “ it tastes weird now “ to “ I’ve never liked it “ ( when she’s eaten it constantly for a month! )
Even her 2 takeaway options have become boring as she’s had them so much when I’ve been desperate for her to eat
I don’t know what to do - I’m so worried but she says she is fine and that I need to know what food she wants and then this wouldn’t happen - but it does with every option!
She is selective mute in front of professionals so won’t agree to speaking to the GP or a therapist and at 13 I can’t make her but what am I meant to do 😢

Look up arfid....

I used to shop for my dd every day on the way home from school.
It was an absolute pain but if she chose it then, I could go home and prep it.
I also didn't used to sweat what she ate. If she wanted crisps and dips, that is what she would have, anything to get food into her.
She is 17 now and a bit better, I have a few dishes I can prepare that I know she will eat.

This recent thread might be helpful to you

to ask what your teenage daughters with ASD are like? http://www.mumsnet.com/Talk/amiibeingunreasonable/4979747-to-ask-what-your-teenage-daughters-with-asd-are-like

With our ASD dd, we sat down and went over the nutritional requirements that had to be in her diet. If she wanted to be vegetarian, she had to eat vegetables and legumes. there just isn’t any other way to get the nutrition she needs.

Otherwise, we would continue to indulge her limited diet that included a repeat of takeaway meals, smoothies, and things like Nutella and cream cheese for extra calories. It’s not a great diet, but smoothies are the cornerstone of her nutrition and she gets protein by eating particular takeaway chicken. The places recognize us and just start her orders as we go so often.

so in short, we talk about nutrition requirements and then i indulge the repeat menu to keep her calorie intake up.

I’d take her to a GP and if necessary speak for her, or even go without her if you have to.

My autistic child has a very restricted diet (he currently eats a rotation of two breakfasts, one lunch, and rotation of four dinners) - he knows that he simply can’t give up one of those foods unless he replaces it with something else and that otherwise we have to go back to to doctors. It is very very difficult.

His eating is very linked to his emotional state too - he’ll eat much more and a wider variety when he’s calm, happy and there’s nothing going on in his wider life that’s bothering him. It’s the first thing that makes me notice he’s unhappy about something, he stops eating. So I guess I’m wondering if something happened with your daughter since Christmas that’s upsetting her and this is how she’s expressing it?

Hi, my middle son was diagnosed with Anorexia at 12, now in his 20’s. Definitely suspect neurodiversities in his case - as you probably know eating disorders commonly co-occur. The most important thing is to start the process of support before too much weight is lost. Are you able to weigh her and work out BMI? It’s not hugely useful as an exact figure but it gives you an idea of what you are dealing with. If she does have a restrictive eating disorder like Anorexia they will use a more accurate height/weight ratio %. At that age my son would not engage either, but the therapy is first targeted at parents (FBT family based treatment - the Maudsley Method) supports you to re-feed. If it Anorexia and they have been restricting their brains are changed by the lack of nutrition and they are not able to take what they need from therapy at first. There are medical checks to be done if they suspect Anorexia, including sitting and standing BP, heart rate and blood tests. Your GP can do them. Down the line she may engage with different kinds of therapy, E.g. my son had cognitive remediation therapy delivered via a play therapist when he was 13 which he found helpful. When he was older he accessed CBT through an online therapist and found that useful. Wishing you the best of luck x

What are her safe foods?

Smoothies were the best think for my DD with added protein powder.

I would speak to your GP, without your DD. Autistic kids are high risk for eating disorders. It’s going to be important to get support at an early stage (assuming they don’t say there’s no support until a child’s BMI goes below a certain level, which is unfortunately quite common).

My son had these milkshakes on the NHS but you can buy them, they are packed with calories. He doesn't eat breakfast or lunch and the only dinner he will eat is the same brand of pizza, chicken nuggets and chicken super noodles. Never ate any other dinner and he's late teens now. Hope your daughter is OK op. He was tiny at one point, 42kg at over 6 foot tall and they said he didn't have an eating disorder and was fine. Hate to think how tiny he'd have to be for that. He's put on a bit of weight now.

Current foods consist of chips, waffles, jacket potatoes, margarita pizza, beans and mini eggs but she doesn’t really have any food that are “ safe “ as after a while of eating one of the above she will say she hates it and then it goes onto something else like plain pasta for a while before she then hates that and the cycle continues 😢
I am going to see the GP without her as she’s refusing any kind of milkshakes or fruit and vegetables.
Its so stressful and worrying

It is a mental health issue

I know they have a unit a Kings (Maudsley) or they did have anyway if you feel it's getting the better of her

Thank you I’ll look this up

I can’t believe you were told it wasn’t an eating disorder @MissersMercer. I was just reading about this seven year old autistic boy who died from the effects of malnutrition due to his restricted diet.

https://www.dailymail.co.uk/news/article-12959437/amp/Heartbroken-mother-tells-beautiful-happy-autistic-son-seven-died-cardiac-arrest-eating-disorder-left-surviving-just-biscuits.html

It is so stressful. DS2 (autistic) has ARFID but awareness of it was non existent when he was young. He improved and then at uni during lockdown developed an eating disorder. We needed intervention. But he's fine now.

The most important thing is for her to get the nutrients she needs and enough calories to stay alive. I used to give DS children's gummy bear vitamins from Boots - he liked them - it's a tiny packet of sweets but the vitamins are in them. You can also try the sprays - Vit D and B are available as sprays.

Also, talk to her. Explain the vital importance of different nutrients and where they come from. Tell her she doesn;t have to like a food, as long as she can tolerate it, she can eat it for its benefit to her, and that she should immediately reward herself afterwards with either a small food treat or another treat so she feels good about making the effort.

I was told not to worry if his tastes were very limited as long as he was eating something from each main food group and using vitamin drops, gummies or sprays to compensate for lack of variety, this was good advice. he lived on PBJ sandwiches with the crusts cut off, carrot sticks and peeled apple slices for about 10 years!

What will she eat without too much fuss from each food group?

Weird. I've just written a supportive reply and it has been instantly hidden so MN can look at it. What on earth triggered that?

Must have been a glitch. I reposted and it appeared.

It’s all just so so stressful
She doesn’t really have “ safe “ foods that she will eat consistently as after a while she hates everything as had it too often

We were told to cycle foods to try to stop the rejections but it is really hard when you haven't actually got many options to cycle round. Food chaining is another thing we have been recommended to try and what we call a play plate (younger child) where it is more about working through the 32 steps of eating so he can get used to it being on his plate and then touching it and maybe one day he will eat it. CAMHS also sent us on a parent course about anxiety which had some useful ideas and suggested goal setting and rewards together (this did progress us a bit certainly on touching new foods and added one new thing till eat and one old previously rejected food back in). It is exhausting and such slow progress and I try to adopt the attitude of PP about not worrying about it but I do find it all so stressful as well. All the best and hope it improves for you/her

i would involve her school also and Beateatingdisorders website

My son and daughter (both asd)never eat fruit or vegetables but they do eat a little meat.
They are both under paediatricians who say they are in perfect health and not to worry.
It's difficult but you can't force them to eat it's counterproductive

It is very stressful. Try and give her as much control as possible. Chat about the effects of Arfid. Ask her if there are textures she likes or can't stand - such as soft (ice cream, smooth humous or guac etc) Crisp - like crisps, crackers, tortilla chips, crunchy like nuts, carrot sticks etc. Sludgy like mashed potato, thick smoothie, weetabix in milk, porridge; chewy like gummy sweets or toffees, some beef or chicken.

If there are textures she can tolerate, give her tiny sample pots of different things with that texture - ask her to taste them and judge them out of 10 for taste, texture, nutritional value etc and see if she can become more in charge of her own nutrition.

We learned never to dismiss food for low nutritional value when DS was at this stage. If all he would eat was soft ice cream and corn chips, that was absolutely fine, because it got some calories into him and also encouraged enjoyment of food, which is vital, long term.

I don't know if your daughter is the same, but DS was far more prepared to try new things in restaurants than at home. Far more likely to try a new burger or pizza topping. Once he had some food he liked outside home, I tried to replicate it at home, first using shop bought sauces as he liked synthetic flavours and gradually swapping these for home made fresh produce.

One more tip: never ever listen to advice from people who don't understand ARFID. The rules are different. People will talk about avoiding processed food or making them sit at table until they have eaten etc etc. It's just nonsense if you have an autistic child with sensory processing issues.

2 DCs with ARFID...
They definitely have cycles- and as another pp mentioned it's often related to their emotional state...

One DC has no appetite until 3/4 pm so we try to go with that and serve up whatever they are into during that window- it's sometimes nothing more than 15 plain crackerbread with butter and some chopped apple and dried mango. Maybe a yogurt.

It really is distressing as a parent- knowing when to insist and when to retreat is an on going challenge.

Working with your daughter, not judging, shaming, reacting, commenting or even moving your eyebrows (they might take this as a sign of disapproval) can help her feel like she can be totally open and honest about food and eating- even if it's not anything you'd recognise as 'normal' or whatever. Take each day as it comes- look after yourself too and make sure you have somewhere to offload.