What support for 10 year old with ASD, ARFID and depression

[Elisheva]

I’m hoping that the hive mind might have some suggestions that we haven’t yet explored. Sorry it is very long.

My friend’s ds is 10 years old. He is diagnosed with Autism and ADHD. Over the past few years his physical and mental health has been declining and he now spends all of his time in his room, sleeping or watching his phone. He talks about how he hates his life and wants to die. He will bang his head and scratch himself when he is distressed. He will not do anything that he used to enjoy (football in the park. playing with Lego). He will come home from school go to bed and sleep until the next morning.

He is very overweight and struggles to exercise as he has asthma and starts wheezing. He eats an extremely restricted diet (currently Kit Kats, plain bread, ready salted crisps and pineapple). He becomes aggressive and will start self harming if she doesn’t give him the food he wants.

She has tried to get help so many times. She sees the GP, who refer her to CAMHS. CAMHS say that his difficulties are all caused by ASD and therefore not for their service. She has been referred to autism support services who say things like she’s a great mum, and doing her best and not to be too hard on herself. Which is lovely, but doesn’t actually help her ds. The dietician said that they don’t get too worried unless the children are losing weight, and that she is doing all the right things. She said not to worry about healthy eating as long as he is eating something. There are no services for ARFID in our area.

My friend is so frustrated. Her DS is pale and lethargic, he is chronically constipated and his lips are cracked and bleeding. She believes that he is malnourished, even though he is overweight. He does go to school, and they are supportive but also at a loss. He is frequently off sick, he won’t use the toilet or eat at school so my friend has to bring him home so he can use the toilet there.

Help us. What can we do? He is steadily getting worse and no one seems to be able to help. She has no money to pay for private services.

He likely is malnourished if that’s his diet. Would he drink nutritional shakes? They do chocolate flavours. Paediasure or Ensure for example, they will have essential nutrients for him.

Youngminds is a charity that offers support and advice to parents as well as young people. They are very knowledgeable and should be able to signpost her to any available help, so awful CAMHS aren’t offering anything, that’s the whole point of them! They did book my AudHD DC in with a psychiatrist, although they were useless, but that’s a different story. So many young people being failed 😞

Young minds here
https://www.youngminds.org.uk

I had a DS who had restricted eating.

it was a long term process.

firstly we got him on multivitamins. There’s a lot out there. You can get him to try them and rate them out of ten which may help with getting buy in. Quite a few of the kids ones are sweetie like as well.

then it’s a case of doing all the following on a regular basis:

going to Tesco and letting him choose a treat (must be something he’s never tried). Get him to describe the new taste and how it feels.

cooking with him. I personally went down the line of this is a life skill it’s good to learn. We started easy with knife skills and chopping salads and fruit and moved on to pasta. He often didn’t eat what he’d cooked but it builds skills and sometimes he’d try it.

cubs actually helped because they had cooking badges and he did overnights where they roasted marshmallows etc.

it took several years.

Vitamins are extremely important. Get the GP to give him a blood test. Vitamin D deficiency will be the obvious one that is making him depressed overweight and lethargic but b vitamins too. Incredibly easy to boost vitamin D with a supplemt over the counter but best to check with GP for a loading dose

This is what my son had in similar circs

The GP should also be able to help with the constipation. That would make anyone depressed. And it's very dangerous!!!!

I think there is a grain of truth in what both the dietician and the autism support services said. He is eating something and she is managing to get him to school. So he is actually doing some things she can be grateful for and feel positive about. She has to believe that vitamins and help with the constipation (for all we know this could be at a health threatening point...could she take him to A &E perhaps if he has stomach pain and they could do a scan) will make a small improvement even if the other problems still remain (his limited diet, controlling ways and self imposed shut down)
With an autistic child you have to start with very small improvements and often this can mean accepting what to outside world are very limited habits...and then you build on that rather than feel in despair that they aren't doing x y z.
With my ten year old I think we concentrated on watching telly TOGETHER as a way to get him out of his shell
Could be sport could be a drama (he enjoyed Downton and Merlin)

Supporting autistic children with constipation - ERIC https://eric.org.uk/constipation-and-autism/

Actually reading back your original post, perhaps he should have some time off school - maybe school is AGGRAVATING his eating /toileting problems and his anxiety however supportive they want to be. The social side may be destroying him too. Feelings of shame and alienation.

I had other thoughts about limited eating ...his existing diet seems to be quite "crunchy" and acidic so maybe work on introducing different kinds of crunch perhaps twiglets or vegetable sticks perhaps with an optional dip (very optional IE houmous or sour cream) build on what he likes already. Wafer biscuits as well as kit Kats. Anything to give him a sense of variety and interest.

Ten year olds do tend to lose interest in Lego as they start to hit puberty; and they are more acutely aware of not fitting in with their peers they want friends but don't know how to make them this increases the depression and anxiety and desire to control a few things

Therapist here - neuro-affirming EMDR may be useful. Also check out safe and sound protocol polyvagel therapy. Can be useful for ND folk

Thank you, some useful things to look into. I will suggest she asks the GP for a blood test.
This has all got much worse over the Summer holidays, so we’re hoping that the routine of school might help a little.
The most frustrating thing is that CAMHS say that they are not the right service, but then don’t seem to be able to signpost them anywhere. There is an eating disorders service but one of their criteria is weight loss.
The health services seem to view all the different issues in isolation, no one is looking at the overall picture.

Would this be accessible on the NHS?

EMDR possibly depending where you live.
safe & sound no, unless your child has occupational therapy as part of his EHCP, it can sometimes be part of that.

Private psychiatrist to assess and prescribe anti depressants. My 11 year old is a different child now

FWIW, kitkats are a pretty good start. They have milk in them, which includes a lot of iodine and calcium. The wheat in the biscuit part is fortified with iron and B vitamins. So whilst it's not great, it's better than many alternatives.

It's good that he is still managing school. That routine will be helping a bit.

It might be good to get someone with a lot of time to just sit and listen to him talk, if that is possible. It's likely that he doesn't communicate well and he can learn to do that better if there is someone who can just sit and listen for hours and hours and hours. This is where kind neighbours and family can be a huge help, especially if they are retired without grown up kids.

Has he got an EHCP? Maybe more support with school and educational psychologist assessment would help?
He sounds possibly burnt out. Maybe suggest she looks at Naomi Fishers writing or courses on burn out.

Precious little support for ARFID in our area either. I eventually got so angry that my child was being so badly let down that I went right throught the Complaints Service, to the top of the CCG and also the Parliamentary Ombudsman. There are now ARFID services being commissioned in the County, which will come in place next year. For your friends DS, definitely start with multivitamins. Try to introduce one new food a week and try not to get upset if it doesn't seem to go well - even touching it or licking it is progress. If you can't get your local CAMHS to support you, you could ask for a referral to GOSH, who have a specialist unit. If that is out of area, then ask CAMHS for a care plan for treatment of his eating disorder - don't let them off the hook. Speak to your GP about Right To Choose and try a service in a different area - or a private provider if nothing local.
Ask CAMHS if he can be referred for CBT to address his anxiety/OCD over using the bathroom. If CAMHS are saying they won't treat because he has ASD, and you have made specifically clear that he has suicidal ideation, then formally complain. You can also try contacting BEAT(but I have to say I found them a bit out of touch with reality when it came to accessing services.) www.beateatingdisorders.org.uk/. Good luck.

Thank you. I’m not sure the eating difficulties are exactly ARFID as he doesn’t experience anxiety around eating. It’s more sensory aversions. His mum can’t cook anything that smells strongly or he will vomit. His acceptable foods also change over time. In July he was eating strawberries, sunflower seeds and breakfast bars, won’t touch any of them now.
As I say, I’m sure it’s all interconnected somehow but no one ever seems to look at the whole.
I will look more closely into the difficulties that CAMHS are commissioned to treat. They seem to be using the autism as an excuse.

If the food aversions are more from a sensory processing perspective, it may well be worth looking into the safe and sound protocol. It’s very low intensity and can be done at home easily with the support of a therapist/practitioner remotely.
I wouldn’t actually recommend CBT for most autistic children, especially as exposure therapy can be damaging if the anxiety/fear is driven by sensory processing, because that doesn’t get better the more you expose somebody to it, unlike a Neurotypical person whose fear isn’t rooted in how they experience the world. unfortunately CAMHS and the NhS generally promote CBT for everyone but it’s not always helpful to ND folk.
If you can afford it, a private psychiatrist would be the quickest way to access appropriate medication to stabilise the mood - the other thing you have to remember, psychological treatment for depression in Neurotypical people is often behavioural, so going out doing more, connecting with people. Clinical depression is often misdiagnosed when really the individual is in autistic burnout, and the treatment for that is to rest and have no demands placed upon the individual, so you can see how damaging it is when ND people in burnout are told the way to recover is to do more when they need the opposite of that.

It doesn’t sound like your friend’s DS is well enough to attend school.

What support is the school providing?

Your friend should request alternative provision. On their website, IPSEA has a model letter she can use.

Your friend should request an EHCNA. IPSEA also has a model letter for this. An EHCNA can include assessments from EP, SALT, OT (including looking at sensory integration difficulties), psychologist, etc. And an EHCP can provide therapies - SALT, OT (including sensory OT), MH therapies.

Complain to the ICB about the refusal to provide MH support because of his ASD. They should not have such blanket policies. Michael Charles is a well regarded SEN solicitor and has written about this before.

If they can get a referral, the Maudsley have a good ARFID service.

Your friend could also request social care assessments. A carer’s assessment for her and an assessment of DS’s needs. Contact has model letters on their website. Your friend could also look at her local short breaks offer.