Not an eating disorder, but disordered eating?

[Bubbleswithsqueak]

DS(17) is autistic with ADHD, plus generalised anxiety disorder and depression. Two years ago he had a massive mental health crash, and although he is doing better than at that point he is still very poorly. He struggles massively with fatigue. As well as Sertraline for anxiety and depression, he takes slow release Concerta for his ADHD (appetite suppressant), but can't really manage without the meds and doesn't want to stop them.

His calorie intake is pretty low - around 1400 on a good day, under 1000 on a bad day (he is short and slight, and VERY sedentary). His BMI is currently 17.5, but holding fairly steady for about 9 months. He does have raised SHBG (in two recent blood tests), which can be caused by low BMI.

He doesn't want to be thin, but has real issues being aware of hunger. He often feels nauseous, and has the kind of fairly limited diet that is typical for autistic kids. He eats things like ice creams, sweets etc, as well as meals like pasta and cheese - just not enough of them!

A day's food would usually be:
Breakfast - half a protein shake (100 cals)
At some point in the day - an ice cream (250 cals)
Tea - spaghetti carbonara, lasagna, chicken fajita etc
Possibly another ice cream, or some cheese and crackers late at night.

I don't really know the point of my post - I guess I'm asking for hints and tips to help this not develop into an ED, anything that might help him to maintain or gain weight, anything to be wary of or to watch out for. Anything we've not thought of, really! Feeling very out of my depth.

A relatives child has avoidant/ restrictive food intake disorder. They have had a line put in to be given protein/ medication.

Ds is autistic and was assessed, and diagnosed with ARFID at 17.
He was very fortunate to get specialist input that helped a little.
He's 19 now and his diet is still very limited, but he's no longer underweight.
The ARFID clinic that treated him had a saying that "all food is good food". And to not worry about healthy foods etc.

We are way beyond worrying about healthy foods. Any food is great! I don't think he would be diagnosed with ARFID - compared to many autistic people he has quite a wide range. Just not enough meals or calories.

Add ice cream or cream to the protein shake.

Try and get as many calories in before taking the Concerta, or after it's worn off.

Basically, make sure everything is full fat, so spaghetti carbonara made with cream, Parmesan and eggs etc.

My dd has ADHD and when medicated, eats almost nothing during the day.

She has a protein-rich breakfast at smoothie with ice cream, scrambled eggs made with butter and full fat milk, bacon sandwich, with butter.

Anything eaten during the day is a bonus.

Full meal at 6-7pm.

Snacking during the evening.

Another full meal at about 10pm

So she has 3 proper jeans, but not at normal times.

My DD also has ADHD and a BMI of 16.7 so is stick thin. Like your DS she’d struggle to get an ARFID diagnosis as she will try different things, she just has zero appetite. She was on methylphenidate which killed her appetite and lost crazy amounts of weight. For the last 2 years she’s been on Guanficine instead and although not as good for her adhd as the methylphenidate it’s certainly better than nothing and her weight has increased (albeit only to bmi 16.7, so still skinny). Like you no food is bad.
Typical day:
Bfast - pain au chocolate
Lunch - very small bowl pasta pesto with as much Parmesan as possible
Dinner - pizza (frozen pizza express)
snacks - Cadbury choc bar & small aero

She’s incredibly fussy but will eat pasta and pizza every day of the week! And chocolate. I add cream, butter and cheese to everything I can!!

making-the-most-of-every-bite-cookbook.pdf

I meant to add this! Which I’ve found helpful .

Agh! The link doesn’t work! It’s a list of high cal recipes. Let’s see if this does!

https://www.hse.ie/eng/services/list/2/primarycare/community-funded-schemes/nutrition-supports/making-the-most-of-every-bite-cookbook.pdf

This has been so useful. Ds2 is autistic, has ADHD and anxiety. He does not eat when he is anxious and is now underweight, struggles with sleep/fatigue and, whilst is mentally better than he was, does not eat properly.

What’s his appetite and calorie intake like when he’s not on the ADHD meds?

Are you sure he has generalised anxiety disorder and not emetophobia? It's commonly found in girls but 10% of sufferers are male and a huge number keep it secret even to the closest family members. His diet sounds very similar to mine during my 20s when the phobia was at its peak. I've never been formally diagnosed but I strongly believe I have AuDHD, which played a huge role in developing the phobia.

Everything boils down to the fact that he's afraid to eat foods that might make him sick. Emetophobes feel nauseous very frequently, out of pure hyperawareness of their bodily sensations and that triggers the panic which makes it even less likely for them eat anything. Whatever foods do get eaten are usually processed snacks, sweets or heavily cooked carb-based meals since these are the least likely to cause food poisoning.

I would often eat very little during the day out of pure anxiety, an then obviously get hungry in the evening and have one of my "safe meals" which included lasagne, fajitas, pasta, baked potatoes. The anxiety got better in the evening and I'd often have late night snacks like crackers or crisps. I avoided raw fruit and veg since these were often linked to food poisoning.

Emetophobia is extremely common but rarely discussed so many people are surprised it exists. Sufferers have a lot of shame and often misdiagnosed with GAD or ED. Psychologically it's fairly similar to anorexia (I believe it's almost as prevalent just much less well known), but instead of a fear of food making you gain weight, it's a fear of food making you sick. Many people also have a fear of being sick in public so this often overlaps with agoraphobia and social phobia. Emetophobes also struggle with germs (hand washing, OCD symptoms), travel (due to people or themselves being travel sick and dealing with unfamiliar food) and socialising (possibility of getting infected by someone else or having to eat/drink unfamiliar things).