F.E.A.S.T's Around The Dinner Table forum

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Faddywrite
Bit overwhelmed today as my daughter has just been diagnosed with high functioning autism! We spent two hours answering lots of questions going right back to when she was a baby and we could see that the traits were present from.a young age..I know eating disorders can make symptoms like rigidity worse so I will just carry on feeding my daughter etc as I was and hopefully some of the anxiety will lessen. The doctor will call the camhs psychologist treating her ed and discuss the treatment in the light of her asd diagnosis. My daughter seems relieved.
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Pingu
My so. Is autistic but on the other end of the spectrum. It’s my daughter who has AN.
I know it’s a shock but she’s still the same girl
If you want to talk I’m happy to
Michelle xxxx
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smileymum
Bless you, Faddywrite
Bound to be an emotional time - even if it confirms your suspicions and even if deep down, somewhere, it might even be a relief to know what is going on for her. (My older non ED D is going for a diagnosis presently - we've always suspected. Went for a diagnosis as a child and it wasn't given but I remember the emotions around this time)

How is your d about it? Will you get/do you need further support as a result?  Thinking of you. Can you take a bit of time out for yourself to kind of process things a bit. xx

Smileymum
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Faddywrite
Pingu wrote:
My so. Is autistic but on the other end of the spectrum. It’s my daughter who has AN.
I know it’s a shock but she’s still the same girl
If you want to talk I’m happy to
Michelle xxxx


Thanks Michelle, I felt fine earlier, just relieved. No feeling quite so great now as I've realised that it's harder to treat eating disorders in autistic young people. But you're right she is still the dame, lovable girl. She seems fine with it and has already told close friends and teachers! She was more worried in case the assessment was false!!! We would not have had any idea at all if she hadn't developed an eating disorder! 

I just hope the Camhs psychologist can still find a way to treat her, even if it has to be tweaked a bit.

Anna
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Faddywrite
smileymum wrote:
Bless you, Faddywrite
Bound to be an emotional time - even if it confirms your suspicions and even if deep down, somewhere, it might even be a relief to know what is going on for her. (My older non ED D is going for a diagnosis presently - we've always suspected. Went for a diagnosis as a child and it wasn't given but I remember the emotions around this time)

How is your d about it? Will you get/do you need further support as a result?  Thinking of you. Can you take a bit of time out for yourself to kind of process things a bit. xx



Thanks Smileymum, my d seems fine with the diagnosis, more worried that it might be false! She was well over the threshold though and the doctor said even if she had been just below she would still have diagnosed based on the things we told her. My d has already told her two close friends and a teacher.
School have already made some small adaptations for my d so she may not need much more support, but I think next year in her exam year she may need some, as she is already pretty stressed just thinking about her GCSEs!
I think it hit me earlier that this diagnosis may make her ed harder to treat, that is why I am feeling a bit upset. But it makes sense and I am a bit relieved for my d that she finally has a diagnosis. xx
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teecee
Faddywrite we are awaiting an assessment for the same condition. Our college has been amazing at putting support in to assist our D. She has a support worker, a room available daily if she needs and the Ed Psychologist is observing lessons to make sure they support her learning. All this without a diagnosis yet...from the conversations we had with the SENCO they said it was clear she needed support now as she definitely sees the world in a different way.
Funnily enough my D also felt relived when it was suggested by CAMHS.
All the best I hope you get the full support you deserve. Xx
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smileymum
Hi Faddywrite
Pleased your d seems to have taken it well, told friends and a teacher (if she stuggled with the diagnosis it would be so much harder) and some adaptations look like they are or will be in place as needed. Good news. When it all shakes down, having some peace over it and feeling like you at least know what you are dealing with can be empowering?

For what it's worth, I see the additional challenges it may bring for ED treatment but I wonder if there may be some positives. For example, might she be more likely to take recommendations when you say it comes with authority/from what you've read, what the ED docs professionals say (if they are any good?) She seems like she doesn't shy away from a challenge and fronts up (have I got that right?) In which case since you, your d and docs are all agreed about the diagnosis, you sound like you are on the same page with this, then perhaps this will benefit how you tackle ED together with this same united front?  Just some thoughts.

Wow, Teecee, your college sounds fab. Also good to hear your d would be OK with a formal diagnosis.

All the best to you both moving forward. xx
Smileymum
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teecee
Thanks smileymum 😊 yes they’ve been great re that and her AN fortunately. We are VERY lucky. I wish it were the same for everyone. Xx
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Faddywrite
Wow that's amazing! My d loves the Senco and her team and I know she has gone to them in the past. They even asked all the teachers to let her sit at the back in lessons so she feels less anxious..She doesnt have any orher support in class but I think if she needs some when it comes to her exams they will help. She is in year ten and very anxious already about her gcses. I do worry about her ed treatment and how it will work alongside her autism but apart from some anxiety and the need to control eating she is happy, likes school and calls it her second home.
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Faddywrite
Hi Smileymum yes my daughter is listening to the psychologist and I'm currently trying to make her see that she can only trust online health information if it is on the NHS website. Going to ask to see a dietician so she can ask any questions..She has no filter when it comes to reading healthy eating info!! The psychologist is aiming to help her with us but I may have to.accidentally turn off the wi fi for a bit!!

My daughter definitely doesn't shy away from.a challenge. The doc who assessed her said it must be so tiring for her having to cope with asd and an eating disorder. I'm so proud of her and getting the diagnosis will I hope boost her self esteem.
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ValentinaGermania
Toothfairy collected some great articles about autism and ED:
https://www.aroundthedinnertable.org/post/autism-eating-disorders-9894573?highlight=autism+eating+disorders&pid=1305940205#gsc.tab=0

Hope that will help. I think at least the rules about refeeding will be the same.
Tina72
Keep feeding. There is light at the end of the tunnel.
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Faddywrite
Thankyou I am feeling a bit despairing tonight. My daughter came home from school happy saying they had had lots of treats from.all the teachers; cakes sweets chocolate and then they had all gone to the hall and had hot chocolate and cookies. Then, with a smile she said "If course I didn't eat any of it, and gave my sweets away.." She didnt have the hot chocolate either. I know her asd is partly to blame as well as the ed but she is so rigid!!! I am so frustrated.
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Mamaroo
I feel your dispair, Faddywrite. It sucks that they can't enjoy treats 😣. Maybe you can tell her that it is normal to have some treats. We are teaching our children that all food is fine in moderation. I hope she'll have more oppertunities to have treats with her friends.
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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ValentinaGermania
"Then, with a smile she said "If course I didn't eat any of it, and gave my sweets away.." She didnt have the hot chocolate either."

I can also imagine that the ED is using autism as an excuse now and that she thinks when she is autistic she does not need to eat. I would try to make clear that autism is no excuse for starvation and for not eating something. In IP they said "you can have chickenpox AND lice and the symptoms are similiar but it has nothing to do with each other".
It feels like at the moment ED counts that as a win...
Keep feeding. There is light at the end of the tunnel.
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teecee
We got support for YR11 exams...she was able to take them alone with an invigilator. This helped relive the anxiety enourmously. You just need a letter from CAMHS which they will happily supply.
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Faddywrite
Thanks I will ask Camhs
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