To think we need to change how we treat Anorexia

[S3aH0use7337]

My dd has suffered from this disease since lockdown. It has had a catastrophic impact on her life. Part of the reason she has been ill for so long is that the traditional way of treatment relies on family therapy. My dd has autism and this style of approach with parents being in control just didn’t work for her and often doesn’t with autism. Research shows autism and Anorexia can often be linked. My DD’s Anorexia wasn’t picked apart and she wasn’t given any coping strategies that suited her or proper specialist support just FBT. CAMHS pulled back from FBT when it clearly wasn’t going to work but didn’t have any ideas of what else to do and just tried to make her focus on other things with the idea that real would make her suddenly decide to get well.🤔 No tools were given to do that .The anorexia got more and more imbedded . Because FBT is the default treatment they were too scared to take the bull by the horns and try anything else. Because beds in units were in very short supply she just ping ponged in and out of paed wards without specialist care and the disease was left to get more in control of her life. I saw so many other young people in the same situation with trauma and ptsd becoming common.

Under adult services she has tried a different style of treatment with some success. It’s hard though because she has been ill for so long. I don’t understand why it isn’t tried earlier under CAMHS.

In addition to this is the issue re how adult sufferers are accessing care. It’s shocking but the iller you get the less help you seem to get with some areas now discussing palliative care instead.I have added a link which explains the truly shocking state of play at the moment.

So AIBU in thinking the whole area needs a massive rethink starting with a look at the FBT or nothing approach for young children, links to autism and the shocking struggle to access treatment as adults?https://www.theguardian.com/commentisfree/2024/feb/25/illness-worsens-scandal-eating-disorder-treatment-england

Agree. My daughter diagnosed a long time ago. No autism but still FBT and other therapies haven't worked. She is monitored regularly to stop her from dying basically, but not enough support to help her move towards recovery. It's crap.

It just is. I don’t get the obsession with FBT and FBT only. It doesn’t work for so many young people. The situation under adult services with sufferers being left to die is just shocking.

My niece is autistic and anorexic. Her anorexia and autism are definitely related. She has OCD about only eating ‘healthy’ foods, but is convinced that almost everything is unhealthy, so she doesn’t eat. She doesn’t want to lose weight, it’s all about foods being unhealthy. It’s only in the last few months, when she ended up sectioned in a hospital 250 miles away, that anyone actually listened to her and us about why she wasn’t eating. She’s still very ill but has introduced things like huel meal replacement drinks because these are something she can convince herself is healthy, so instead of just an apple she’ll have one of those a day. She walks miles every day because she thinks exercise is healthy, even though she’s just skin and bone. Services definitely don’t seem to understand how her autism links to her anorexia.

I do think part of the issue is that we expect the professionals to have answers and treatments for everything and the challenging answer is that they don't. There is no magic wand that can be waved in many cases even if money and resources were no barrier.

I think there is an increasing awareness that anorexia is an symptom of autism in girls. Autism has long been under diagnosed in girls.

Mental health and illness has always been woefully under provided for on the nhs. I don’t see things changing for the better sadly

There are other evidences based treatments for AN, other than FBT e.g CBT
a lot of young people respond better to CBT than FBT

The main problem is professionals and parents setting target weights far too low, especially for pre teens / teens. It is a fundamentally biological illness. The medicine to treat it is food / calories and weight gain. No amount of therapy will help when the brain is too starved. The psychological symptoms are because the brain is starved. Those symptoms will not go away until adequate nourishment is achieved. If target weights are too low this doesn’t happen and the sufferer becomes a chronic case. Therapy/psychological intervention is for when adequate nutrition and weight gain is enough to show an improvement in symptoms. Then therapy to develop coping strategies to prevent relapse.

FBT is really, really hard on everyone, but the point of it is to get the medicine (I.e. food) in to achieve the necessary weight gain to a proper level before other treatments can be successful.

But the reason is they don’t have answers is because they are so obsessed with FBT and are not looking at alternatives even though they know Anorexia is often linked to autism and that FBT often doesn’t work that well with ASC. The stats for it aren’t that great anyway. Young people aren’t having their illness picked apart and are not being given non FBT focused skills to get well. The treatment my dd is now getting is doing that and she is responding.

Leaving adults to die further down the line with no treatment isn’t ok. Sufferers want to live.

Anorexia is not a symptom of autism. They are two separate conditions.

They may be linked in that autistic people appear to be more at risk of developing anorexia but not always. There is genetic research on anorexia and some genes have been identified that predisposes people to anorexia so they are more at risk too.

Sorry but I disagree this is exactly why my dd was left to get so unwell . She needed therapy and food. She needed therapy to get the food in and give her coping strategies, to work out why she was Anorexic.Young people with autism often do not respond to FBT and a high percentage of those with autism have ASC too. It’s nuts. We did FBT for 3 years and it did not work even when she endured trauma induced force feeding and full weight restoration over and again. She needed a different style of treatment sooner. I hear so many parents saying the same thing.

@S3aH0use7337 would you mind sharing what treatment is hopefully working for your DD now. My DD had FBT for sometime and I agree it never attempts to unpick the actual issue.

Why are they more at risk though? If it’s genetic as you propose then presumably some of the same genes are responsible for both conditions given the overlap. In that case the conditions aren’t really separate.

I think you make a good point. Medical care can’t fix all diseases/disorders and psychiatry further behind than other fields in part due less research funding but mainly due to the complexity of the brain. Care for mental health and eating disorders would be better with more funding but it wouldn’t cure everyone (I work in the clinical and research field)

I agree about FBT, it is also almost impossible to operate with a lone parent and an older teen who is not entirely in your control and can leave the house/stay up all night to outwit you.

In our case, I was convinced, and subsequently it's been the case, that it wasn't 'just' an eating disorder and so this idea we would hit the better weight and their thinking would get much better just never happened. I knew there were underlying MH issues that needed urgent attention, at the same time.

I would like my dd to have done CBT as well, but it just never happened. That said, so far, adult services are sensible and focused on safety and quite patient, and there isn't the parental telling-off thing constantly going on as in child services. We are also in long-term recovery after an ED that started later in teens.

That really isn't good enough, though. It isn't about 'finding answers' it is about working with what they have got, trial and error, seeing what's actually in front of them instead of just throwing their hands up when what they assume ought to work does not.

TRIGGER WARNING -DEATH

My niece was diagnosed at age 15. We were told she was anorexic but nothing really happened and life went on. She went off to uni and was sent home after 6 months in a skeletal state. She was admitted to hospital for the first time for life saving treatment ie tube feeding and a telling off. This was the start of a cycle of admissions to general wards and specialist units where they would feed her up and send her home. They kept asking her what had triggered her anorexia and because she wasn't able or willing to tell them they would be exasperated with her. It felt like she was being passed from pillar to post. Finally after a suicide attempt they decided she had a personality disorder and sent her home for care at home. The care all the way through was just woeful. Tragically she died last year aged 32. Her whole adult life was just pain and suffering. It is such a horrible disease and so much more complicated than just starvation. I can't believe they still don't seem to have effective treatment.

My dd is doing MANTRA . We’re so not out of the woods yet and it’s not a miracle cure but it’s sooo much better than FBT and you don’t get it until under adult services. I don’t get why they can’t do a child version. After a year of unsuccessful FBT they should be looking at alternative treatments but they don’t. The longer the illness the less likelihood of a positive outcome. 3 bloody years we wasted doing FBT leaving the ED to get more imbedded.

@annonymousse I'm so sorry. That's awful.

I was anorexic for 10 years and the lack of treatment available then was shocking. I had an amazing therapist as a teen who I really respected and listened to, but I went off to uni and was told by the mental health team there that I didn’t have any real problems and was discharged when my weight was at a critically low point.

More work needs to be done on the root cause of anorexia in the individual. In my opinion anorexia often develops as a poor coping mechanism, same as self injury, and if you don’t deal with the root of the issue all you’re doing is force feeding (which has a time and place, when you’re starved and malnourished you can not think straight at all).

I 100% agree that the energy deficit needs correcting first, but my parents in control would never have worked for me, I would have fought back on principle. It also would have not worked for my parents who were independent at 15/16 and thought I should be too. It needed to be my decision.

But all they do is push a traumatic crap treatment that doesn’t work for many patients particularly those with ASC. They don’t try anything else until it’s too late. The FBT obsession needs to end as does bumping adults off treatment if they become too unwell. It’s a scandal.

I’m still having therapy myself as a result of FBT and only just starting to rebuild my relationship with my daughter after FBT did so much damage.

I agree about FBT, it is also almost impossible to operate with a lone parent and an older teen who is not entirely in your control and can leave the house/stay up all night to outwit you.

I'd have just walked out and would have been sleeping on the train with a return ticket riding back and forth. That was my go to for family fights.

That was exactly the same with my dd and CAMHS thought the same, so much so the psych actually said she needed to be in control and FBT needed to stop but they gave her nothing else. No investigation and picking apart of the cause of her ED or coping strategies. She’s done 1 year of MANTRA and made more progress than in 3 years of FBT. It’s nuts.

Absolutely!