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teecee

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Reply with quote  #1 
So my AN D (16) has asked to be rereferred to CAMHS again after a fairly big relapse after starting college (throwing lunch).
During the assessment they asked if we had considered autism. I have to say I have thought this was a possibility all her life but when I sought advice from a SENCO friend was told possibly but labelling kids can be harmful so to leave it if she seemed to be coping with life - which she was doing extremely well with until AN arrived at our door.

Anyway, since the mention of autism it’s like a switch has been flicked in her brain and both me and H have noted a lot of positivity. Prior to the meeting there were long lists of fear foods growing but in 2 days after she was eating fear foods with ease and reached for a cream trifle, before eating and declaring that it was lovely and really enjoyed it!! She also said she did not feel guilty afterwards. She seems to be going from strength the strength.

Has anyone else experienced similar circumstances? Is this likely to be a permanent shift or can we expect the loop of behaviours?
From the little I’ve read it would appear that us trying to get her to be flexible in eating patterns may have been causing extreme anxiety and actually having some consistency in timings, what’s eaten and when is possibly helpful.
She says she feels like she now knows herself more and that rather than the AN being responsible for the rigidity of eating behaviours she is now happy as she believes that autism may be driving the AN (rather than the other way round).
Thoughts anyone??
Ronson

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Reply with quote  #2 
Hi

I’ve not experienced this but they are checking my d for autism - so far the screenings have come back negative but there is one more test to do. They basically ask a lot of questions and I found some really tricky to answer as a lot related to early childhood and I had forgotten some of the timings etc - if you are going through the assessment maybe take your baby book or similar so you can answer all the milestone questions (unless your memory is better than mine)

Hope the assessment goes smoothly x
teecee

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Reply with quote  #3 
Thanks Ronson.
I will try to find it and take it along as that’s a good tip! We are not expecting it to start for another 6-9 months due to the waiting list. In the meantime I’ve organised a meeting with the head of a local autism unit for support with strategies.
I was just wondering if anyone out there in FEAST land had experienced this type of positive mental shift and if it could be permanent- I’m really, really hoping so. X
mimi321

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Reply with quote  #4 
Wow, it sounds like with this new possible diagnosis you will have tools that will be better tailored to her needs and will help things go more smoothly! It will be interesting to hear other's experiences. It certainly demonstrates the importance of having potential co-exisiting conditions assessed. It would seem one shoe does not fit all cases (in terms of requiring flexibility in eating, etc). It sounds she feels like things make more sense to her, like she is being better understood, rather than feeling bad about it in any way. It sounds very positive, and hopefully this will not be part of the typical "cycle' as you say. But I suppose even if it is, it is still a positive within that cycle.
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teecee

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Reply with quote  #5 
Quote:
Originally Posted by mimi321
It sounds she feels like things make more sense to her, like she is being better understood, rather than feeling bad about it in any way. It sounds very positive, and hopefully this will not be part of the typical "cycle' as you say. But I suppose even if it is, it is still a positive within that cycle.


Yes that’s exactly it...like there’s another reason why she is like she is and it’s not to do with anorexia. She says she feels more aware of herself and how she works internally.
Yes I suppose even if it is part of a cycle things are certainly improving. I’m just daring to hope she’s really turned a corner but prepared if not.
She’s choosing herself to have another pudding tomorrow...we will see how that goes!!
mimi321

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Reply with quote  #6 
It does sound encouraging for sure. It seems like it is making things easier for her, doesn't it.  It is great for her to have that level of self-awareness and acceptance about who she is. Hope the pudding goes well!  
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Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. - A. A. Milne
tina72

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Reply with quote  #7 
To diagnose autism while they are in the trenches of malnutrition is very difficult because a lot of AN behaviour is similiar to autistic behaviour.
In our case most of the "autistic" behaviour faded with WR. Better timing would be to get them WR and see what behaviour is left and then have them tested.
Tina72

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d off to University now 2 years after diagnose, still doing FBT and relapse prevention 
teecee

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Reply with quote  #8 
Thanks Tina
She is WR and has been for months. X
daffodil_UK

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Reply with quote  #9 
Hi teecee,

Thanks for posting this interesting question! I was thinking about something similar, but coming from the other end. My D (now 16) will get a full autism assessment soon, because of her history with AN, once revocered with cutting and severe sleep disturbance and, although not heavily, still some restrictive food behaviour together with occasional binge attacks (but she manages herself quite well). Since the term autism has been on the table about 5 weeks ago, she felt like she could connect the dots of her journey in the last 5 years and she could name the reasons for her anxieties and of feeling different. That was a good sign.

On the other hand, the symptoms we have to fight with at the moment - like managing her sensual overload and feeling exhausted all day to the extent of not being able to attend school at all - seems to have worsened. And that is when I was beginning to wonder if the diagnosis can cause this kind of behaviour. Some sort of over-identification. Or perhaps more positively, just emotionally digesting what is going on and has been going on all her life - which must be huge.

I hope the positive effects will get more over time and I too have reached out to a therapist, who is specialised in autism, ED, and teenagers - a lucky find!

Re Autism in general: I have learned a lot about that in the last weeks and that it can show very differently in girls than in boys to the extent that girls (perhaps due to the expectation in society) are much better in masking their traits. They often do so by copying and mimicking the behaviour of a popular girl (up until the tone of the voice and hobbies) and can become quite perfect in that and popular themselves. But this all comes at the price of huge stress and exhaustion, which is shown at home for example or by being rigid in other areas of life.

Do you know this website? https://thegirlwiththecurlyhair.co.uk

It has helped me a lot to understand things and it has won many awards. Perhaps this is no news to the forum (I have to say I am back here after a long time, in order to look for other people's experience with AN and autism).

Hope the positive effects will continue and your D is getting the help she needs!

Daffodil



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AN D began at 11 1/2, after full recovery self-harm and now (16 years) severe sleep issues, slight AN relapse but she manages herself, getting full assessment on ASD now.
teecee

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Reply with quote  #10 
Dear Daffodil
Thank you for responding!
There seem to be similarities for us both. The website looks great and no I wasn’t aware of it but will certainly look at it much deeper.

I had previously read about Aspergers in girls when I first suspected many years ago and ticked off a few behaviours but as I said previously I was deterred from getting a diagnosis.

We go back to CAMHS on Monday with the paperwork completed for the referral. Fingers crossed she gets some answers.

She has continued with the positivity and continued to move forward with tackling fear foods of her own accord. She had a pack of Maltesers the other day and has bought a pack of beef to make sandwiches for college on Monday. She tells me she has had no issue with these challenges.

My D was constantly exhausted and does say daily life is exhausting but she is getting stronger and able to last the full week at college. Previously Thursday and Friday would be too much and she would be very grumpy. She has told close friends how she struggles - sensory overload to touch and sound and they have been really supportive, which I think is half the battle. College are really supportive too.
Keep me posted with how you get on. I really hope your D gets the support she needs too xxxx
cm72

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Reply with quote  #11 
Funny you should bring this up because when my D was first diagnosed, I thought at first she might have autism. First clue was the fact she was walking on her tiptoes. A friend of mine at work had a son diagnosed with autism and he walked on his tiptoes. She too has sensory overload. She cannot handle loud noises and often gets anxious at school when the kids get too loud. I'm hoping that as we continue with WR and as time passes, she gets better. But if after some time, she's the same, I will have her evaluated. 
daffodil_UK

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Reply with quote  #12 
Here is another link that might be useful, teecee. The National Autistic Society UK have put together a module about Women and Girls, which is new (2018) and free of charge (at the moment). You simply have to register at their website. 

https://www.autismonlinetraining.com

It takes between 2 and 3 hours to read through all the stuff and watch all the videos and you get a CPD certificate at the end for what it is worth. I found it very useful to see so many different women featured of all ages groups, speaking about their experience.

Yes - let's keep each other posted! Seems we are at a similar stage.

Re Husband: I hear you when you see similar traits playing out in him and your daughter which can have an unfortunate cumulative effect. Same here. Although I cannot deny that I find some traits in myself, my husband has really strong traits. This has been the topic of many family jokes, but not anymore since we are separated (...). I keep telling him that although he might share the same traits with D, the coping strategies might be completely different and that he should not impose his strategies to her, as that might increase her anxieties. Money is the biggest issue for him as well.

Glad to hear your D is getting on better and better. Hope this continues!
Daffodil


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AN D began at 11 1/2, after full recovery self-harm and now (16 years) severe sleep issues, slight AN relapse but she manages herself, getting full assessment on ASD now.
teecee

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Reply with quote  #13 
Cm72 it’s so difficult to know what is AN or something else. I just have a gut feeling but either way I will have to accept what happens.
Daffodil thank you so much!
Mamaroo

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Reply with quote  #14 
Quote:
Originally Posted by teecee

Anyway, since the mention of autism it’s like a switch has been flicked in her brain and both me and H have noted a lot of positivity. Prior to the meeting there were long lists of fear foods growing but in 2 days after she was eating fear foods with ease and reached for a cream trifle, before eating and declaring that it was lovely and really enjoyed it!! She also said she did not feel guilty afterwards. She seems to be going from strength the strength.


I'm happy to hear that your d is finding it easier to eat now. It could be that she is reframing eating in a different way. Instead of thinking "I struggle to eat because of the eating disorder" (which sounds scary) she might be thinking "I struggle to eat because I have autism". And since autism is much more common and in the open it doesn't have the stigma or fear attached to it. This may drastically reduce your d's anxiety around food. 

Whatever the reason, I'm just glad she is eating better and with less anxiety!

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D became obsessed with exercise at age 9. 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. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
teecee

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Reply with quote  #15 
Yes I agree for some reason she is reframing it and therefore less anxious as a result. Thank you...I only hope it continues as the stress is horrendous. It’s taken it’s toll. Xxx
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