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

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sandytoes

I’m sure I’m not the only one reaching their limit. As if AN isn’t hard enough, let’s throw in a world pandemic, just to test us a little more... 

I have never written details on ATDT because I was always afraid my D would come across it. I don’t care anymore. So what if she does?! I need to put into words the absolute pain and anguish I feel every day living this life with a child with AN. The agony of watching other moms, who joined this forum at the same time I did, fix their kids and become moderators is some days so huge that I can’t visit for a time. 


Our D has a history of depression and anxiety that predates ED by three years. At the time, I couldn’t imagine anything worse than your 10 year-old telling you they’d rather be dead. Our ED story is like so many others, the exact personality characteristics for an ED, coupled with a terrible 8th Grade Health class on calories, and comparing her body to others’, led to eating ‘healthy’ and within 10 weeks she was in the PICU with a heart rate that was so low the doctor said if he didn’t know she had an eating disorder he’d be doing CPR. I will hear those words in my head, over and over, until the day I die. (BTW, we were on a waiting list for ED clinic during that time.)

We did out-patient ED treatment with a team that said they did FBT (they didn’t) for a few months and you know the drill... bad help is worse than no help. We parted ways and went on a waitlist for a private psychologist who was actually trained in FBT. We worked with him for a year (he moved) and made progress. WR-ish. First menstrual period ever six months after he left. Three periods, none since. Weight started coming off because foods eaten narrowed and narrowed and now here we are, a year from last period, 15 lbs down. Halfway back to lowest. 

 

Throw into this that she got a diagnosis of high-functioning ASD last April. I know many of you dispute a diagnosis while there is an ED, but the highly respected ASD doc said she could diagnose her just based off the clinicians therapy notes from all the sessions when she was 10 and depressed. Long before ED. And I would agree, going back to childhood. It presents so differently in girls.  

 

So here we are. The black and white rigidity of the ASD complicates the ED treatment. I have yet to find a place that treats ED patients on the spectrum. There is a tonne of research coming out of UCL by Dr. Mandy, but what it amounts to is that they know regular ED treatment doesn’t work well for people with ASD, but don’t yet know what does. The ever-present depression complicates everything because there are no incentives because she doesn’t care if she lives. And 3 1/2 years of food monitoring and losing the battle is beyond unbearable. 

 

I know that food is the answer (at least for the AN piece) and I’m not looking for advice on how to feed her. I did all that for two long, slow, painful years from reading posts here. I don’t believe FBT will work a second time for her, and I honestly couldn’t do it again.

Can you all please spread your info-gathering nets far and wide and let me know of any places that explicitly say they deal with AN in the high-functioning ASD population. I am dumbfounded that this is so difficult given the data on the number of women on the spectrum with AN. Or the percentage of anorexics who are found to be on the spectrum. And, to be clear, she isn’t what some people call an ‘autistic anorexic’, it isn’t an obsession with numbers (counting grams of fat, etc) or texture issues. She very much fears being fat. I’d call her orthorexic at this point. She eats all fruit, vegetables, meats, rice, almond milk, etc. but nothing ‘unhealthy’. She just can’t eat enough to maintain or gain. She exercises an hour a day (walk, bike ride). 

 

Because I know it’ll be suggested, for the record, we pursued UCSF 5-day last year, got through all the pre stuff and the 2 hour interview and we were basically told it would be a waste. The child has to be able to ‘tolerate’ being there. 

 

Thank you all, in advance. 

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Torie
Sandytoes, thank you for sharing your story with us.  What an exhausting path you are traveling.  This isn't really what you were asking for, but I wonder if you might want to drop a line to YogurtParfait offlist.  Her d was an AN sufferer, and her son is on the spectrum.  So she might have some useful insights to share.  She is a wise and delightful lady - if you write to her, please pass along my greetings.

Thinking of you. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Foodsupport_AUS
Sometimes the length of the tunnel to recovery can seem never ending without a light at the end. I can hear you emotional exhaustion in your writing. I can't really offer you a lot of advice about places to go or treat your D in the US, being in Australia but your post makes me wonder a few things. 

One of the problems that both AN and ASD has in common is that cognitive rigidity. That inability to not just focus on those minute details, not being able to see the woods for the trees black and white thinking. Your D's focus on orthorexic behaviours may be part of her AN or her ASD or a bit of both. When it comes to her ASD how is that being managed? Are you being trained to help her become more flexible, open to new experiences, novelty, less black and white? 

My D does not have ASD, however she was particularly rigid in her thinking, very black and white with her AN. Trying to push/force refeeding as in FBT was met with such rigid irrational opposition that she just ended up in hospital numerous times. In the end we ended up going down a more collaborative but very slow path, which has not led to total recovery but we continue to make steps forward in the right direction. I think many of the kids mentioned in the "super resistors" thread have features of ASD as well. Whilst waiting to see if someone has any treatment providers who can point you in the right direction I wonder if the thread can give you some tips for managing now. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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seekinglife

Sandytoes,

I’m very sorry to hear your D is struggling. My D also has ASD (diagnosed in her teens). My D has gone to treatment multiple times and while I have not found a center that is actually ASD friendly I can tell you a few things my D and I have learnt over the years that might help for at home and at a center.

My D is very easily overstimulated so these have helped. Many places offer for her to have a quiet space if needed, wether it’s her room, a room in the center/home that she can still be monitored as needed to by herself away from noise and too much light or a nurses station. We have found that getting a music player approved to play music very loud in headphones allows her to control what stimulations she feels, as well as hot compresses, sunglasses, small spaces (they’ll move couches so she can be in between), weighed vests/blankets/stuffed animals, separate tables for eating as needed, texture allowances for meal plan (confirmed by a psychiatrist/therapist/us), and HARD objects. My D is very sensitive to textures, so many self soothing toys will give her anxiety as well as with food, clothes and touch. I do go over methods we use at home to soothe and what her stims (movements that calm her) are such as sitting on her hands, tapping something hard or doing math-her favorite are soduko, multiplication, and memorizing numbers. 

I have found that D does well with EMDR therapy-not sure if this correlates with ASD.  

Hope this helps a little, hugs. 

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Kali


HI Sandytoes,

You have probably already done this but here are some resources to think about in relation to your daughter and spectrum related eating issues.

This paper gives some strategies.

https://www.iidc.indiana.edu/irca/articles/mealtime-and-children-on-the-autism-spectrum-beyond-picky-fussy-and-fads.html

It also lists some papers at the bottom in the references which might give more information.

In addition, the Autism Speaks site also might be helpful for more information.

http://www.autismspeaks.org

We once had a guest stay with us for a week who was on the spectrum and had real eating challenges. It was really difficult to get him to eat. And it was different from anorexia. With anorexia encouragement and patience seemed to work. With ASD I just got a flat out food refusal even when I had served the safe foods that the person had requested and used my encouraging techniques. And those same tactics I had used at the dinner table with my d. went nowhere with ASD. So what I'm wondering here is if there are different strategies which can be used when someone is on the spectrum and having eating difficulties. For example to try and pay attention to the textures of the different foods and see which ones are easier for your d. to eat and try serving those.

hoping these sites might be able to give you some ideas.

warmly,

Kali

Food=Love
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sandytoes

Thanks, all.

Torie, I emailed Yogurtparfait. I do remember some of her posts. Thank you.

Foodsupport, D sees an ASD psychologist (highly regarded) weekly, and H and I see an ASD counselor once a month. I’ve read a dozen recommended books and been to parent support groups, but we struggle bc she just doesn’t fit the description of any of the kids in the books. Nothing I’ve learned seems transferable. Her struggles aren’t with autism, they are with anorexia and depression. But I know it’s all interwoven. She is very high-functioning (terrible wording, I know the ASD community doesn’t like it, I’m just trying to relay info) probably what used to be called Aspergers. She makes eye contact, is completely empathetic, doesn’t stim, honestly nothing obvious. Explains why the gazillion clinicians she’s seen over 6 years missed it... she finds socializing exhausting and she’s a perfectionist and she ruminates and she has rigid thinking and low distress tolerance. She’s also highly gifted and a complete introvert. All these characteristics are easily attributable to any one of these diagnoses/conditions/labels. And then you run into case conceptualization where the ED doc looks at all her issues as AN related, the educational psychologist sees all issues as highly gifted mind problems, the ASD specialist sees it all as autism related, the psychiatrist thinks treating the depression is key, and on and on. There is no one specialist, who understands all areas deeply who can look at her holistically. All I know is that people don’t die of autism, but they sure die of anorexia and depression, but those things have to be treated through an ASD lens. 

Seekinglife snd Kali, thank you for your replies. D doesn’t have sensory issues or ‘typical’ ASD food-related issues. Her AN is very much mainstream AN, avoiding fats and carbs and rigidity around her food rules, what is healthy and what is not. And not wanting to be fat. And the awful part is that everything she believes is completely reinforced everywhere you turn. She eats a lot, but has to because the energy footprint is so low. 

I’m just rambling now. Sorry. I wanted to answer your questions and thank you for taking the time to reply. 

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