Anorexia and ASC Inpatient for 2 years

Hi there,

It's the same with my daughter.  It's more about having control over something in her life.  

Thanks for getting in touch x

You touched on one of the main issues for my daughter, "lack of engagement".  People on the spectrum don't respond to talking therapies or group therapies as successfully as neurotypicals and it takes them so much longer to connect with or trust people.  They are just forced through the same machine as everyone else.  

I can definitely relate to this.  I also have an obsession with numbers which plays right into the hands of an eating disorder. 

The only person I know in real life that has Asperger's has an incredibly complex set of rules when it comes to food, and was hospitalised as a child for anorexia. She doesn't accept the anorexia label, as she doesn't want to lose weight and look thin, it's more about control and, I guess, the routines. 

I’m so sorry for the awful treatment your daughters have received :(

in my twenties I was impatient and tube fed for my anorexia and still struggle with eating ten years later but not in a typical anorexic way, it’s definitely based on routine.  It has almost become my special interest. I think i frustrated many people that I was so treatment resistant and always discharged for not engaging as I could never manage to make all the changes expected of me!! Only recently, at 31, have i been diagnosed with aspergers. More research and better treatment definitely needs to exist in the link between eating disorders and asd xx

Dear Eleanor, 

It's heartbreaking to hear the same stories. At the same time its a relief to know you're not alone.  I'm so glad our girls are out. My daughter has such a mistrust of anyone to do with ED we have to think outside the box! If the rules of the gym/diet and personal trainer work for her and it's keeping her to a healthy routine of diet and exercise then great! I can see why they wouldn't be keen but if it works for her then why not? Now that you have some kind of system to keep her eating and focussing on being healthy it's exactly the right time to fight for ASD support. The only CAMHS nurse my daughter wants to positively engage with is the one from the Neuropathway team. The key reason is that she 'gets it'. I was such a thorn in the side of these people, especially as they have admitted they didn't know how to help my daughter.  I think the head of the centre would have done almost anything to move us on!! Push! Push! Push!

I do try and keep up with where they are at with research etc and there are studies looking into the stuff we are talking about but it's taking so long that girls are suffering in the mean time. 

I felt like they had the legal right to abuse her.  They kept her waiting for 6 hours after they told her she woukd be tube fed.  Then, at around midnight, starting with 3 then up to 7 adults came into her room, restrained and dragged my 13 year old child down a corridor.  She told me that she was so frightened by the time they all came in she couldn't even hear what they were saying to her. She still has nightmares about people coming to get her in the night.  They were so short staffed the NG feeds were often between 10pm and 1am.  I can't believe so many girls end up with PTSD from these situations.  It can't be right. We knew that similar things were happening to other girls on the spectrum in the same unit. I am grateful she is still alive, of course I am, but surely we can treat people better??? 

Thinking of you all

Lisa Marie xx

Hi Lisa Marie, 

Thank you for your reply. Your experience sounds identical.  I too thought the diagnosis would change how they treated her.  Alas no.  Yes, they did take her ASC into account in terms of allowing her to eat away from the noisy dining room (she can't stand loud places) and they gave her time to process decisions they made about her but they didn't change any of the treatment..  It was essentially weight restoring at the required weekly rate or they put a tube down your nose and pin you down if you refuse it.  Both of these happened to my daughter.  I wish it on no one to witness the distress I have had to see my daughter endure.

Notice, I also said 'the decisions they made about her' because only very rarely did the inpatient unit staff really listen to her.  There were a few who understood my daughter better but  many were impatient with her.  I admit my daughter wasn't always pleasant to them but she didn't want to be there and was mostly traumatised and people working in mental health units should know this!  Whilst I can't castigate the unit too much as my daughter probably wouldn't be here without it I can see it has had a life changing effect on my daughter.  Like your daughter my daughter came out with more mental health issues than she went in with.  The unit itself influenced her;  she never swore before she went in, she didn't self harm before she went in and was on no medication.  I think she will require PTSD therapy after spending 29 months in total in the CAMHS tier 4 unit..

On a more positive note she was discharged from the unit 3 months ago.  It was a difficult time because she was at. a stage where she was almost ready for discharge but not. quite but with her 18th birthday imminent they were desperate to get rid of her.  So in May  2019 she was discharged still under section on a Community Treatment order. However, my daughter had a plan in place this time, to which me and her dad were in agreement with.  She had put this plan to her mini team but they would absolutely not agree to it in any shape or form as they considered it dangerous to her health.....again they werent listening.

Anyway 3 months post discharge she is managing to maintain her weight whilst undertaking her plan.  Her plan being employing a personal trainer so she can safely manage her body dsymorphism and body image whilst maintaining her weight..  This is working for my daughter because she knows she has to eat in order to build muscle and as I am in control of the gym membership and paying the personal trainer she knows I will stop it if things go wrong.  The CTO also means she has to attend Adult services once a week to be weighed.  She won't interact with them other than being weighed so I asked them to refer her to the Autism service........so far they have ignored me.  I contacted the Autism service myself who said they could possibly help my daughter but would need a referral so now we're stuck. 

I know the personal trainer and gym would make some of the inpatient unit staff faint in horror but my daughter has ASC and conventional anorexia treatments just don't work for ASC.  The personal trainer is working.  She still very much has anorexia but at the moment it is under control and it may be that it never completely goes.  Only time and commitment from those who love her will tell.  Keep fighting.   It is so hard and only those who have been though it can understand the anguish, frustration and pain it brings.   X

Dear Eleanor,

My daughter is a bit younger but we have been through a similar story.  She wasn't diagnosed as ASD when she was sectioned.  I just knew from very early on that they weren't treating her right.  I work with high functioning autistic children so I knew that the way the inpatient unit was working with her was ticking the box of weight restoring, with or without tubes etc, but was doing nothing to solve the problem  When she got her diagnosis, I thought we had a breakthrough.  Silly me.  They just carried on treating her the same was as they had done.  I was so frustrated because she was sectioned so they were in control and there was nothing we could do.  Meanwhile her mental health was deteriorating; self harm, depression, suicidal tendencies. Finally the consultant made a referral to  an Autism unit in the Priory group.  They made it clear that they were not an eating disorder unit.  Having that time in a different environment with a different approach worked well enough to get her off her section and at home.  She is still severely anorexic and has more mental health issues than she went in with but the main aim is to keep her out of an in patient unit.  We have CAMHS etc supporting her in the community instead.  I'm a bit late in replying to this message.  I hope things have moved in a positive direction.  Sending you my best wishes x

Hi Eleanor,

you may like to contact our Parent to Parent service who offers emotional support to parents and carers of children with autism. This service is confidential and run by trained parent volunteers who are all parents themselves of a child or adult with autism .
You can contact the team on 0808 800 4106. Please leave a message and the team will call you back as soon as possible at a time that suits you, including evenings and weekends. Alternatively you can use contact the team via web form: http://www.autism.org.uk/services/community/family-support/parent-to-parent/enquiry.aspx