Rachelace said:

Reduced eating in particular seems to be a common comorbid condition. Is there published information / research for how best to treat anorexia for a female with PDA? Severe reduced eating, restricted foods, weight loss, loss of periods, sensory related issues, body image issues including growing up - such complex issues and further complicated with PDA. How well equipped is the system to support bearing in mind most NHS CAMHS do not diagnose PDA and some do not want to discuss it? How bad does a young person need to be before help is given? Any advice helpful. Thank you.

My youngest was a poor feeder from the start, another blatent sign missed. Ask for a referral to a specialist dietician who works with folks on the Spectrum. The paediatric dietician we saw was clueless , only the worst Autistic child are picky eaters , he is obviously not autistic. Could kick myself not following that one up. Make sure it's a Specialist Dietician. You would be horrified at how little and limited his diet is . He is 6 ft 5 in tall and believe it or not is now just within weight parameters. I let him eat where, when and what he wants to eat.
If we go out I tell the waiters he has a food allergy and can only eat certain things . This way the waiters make a fuss , "can we use whatever oil to cook the chips in " , they are not judgemental , " is that all he wants " this way he is in control as well. Saves explaining the fresh air diet and the Autism Spectrum. I have found some cafes locally who are most accommodating. One has an autistic child who understands the difficulties .

http://network.autism.org.uk/knowledge/insight-opinion/understanding-and-managing-eating-issues-autism-spectrum

https://blogs.shu.ac.uk/autism/2016/06/16/i-dream-of-an-autism-friendly-restaurant/?doing_wp_cron=1492039557.6648440361022949218750

https://blogs.shu.ac.uk/autism/2015/10/01/sensory-framework/

http://network.autism.org.uk/sites/default/files/ckfinder/files/Eating issues Dr gould.pdf

https://www.theguardian.com/lifeandstyle/2015/jul/19/lunchtime-revolution-school-children-autism

Rachelace said:

Thank you so much for your reply. Hearing about your son too at a whopping 6ft 5!! The reduced wearing hasn't affected his growth which is interesting. Great to hear he has accommodated the restriction into a functioning lifestyle and in social settings. It's a condition called can become extremely in PDA young people combined with highly controlled life styles (not leaving the house, or dressing or leaving bedroom...)

I'm working my way through the links. The first link had further links embedded at the bottom and it is the info I was seeking:- the difference between reduced eating and anorexia. I'm really grateful you sent this article with this info. Thank you. I've pasted it below for other peoples interest:-

Appendix
Appendix 1: DSM 5 Diagnostic Criteria for Anorexia Nervosa & Avoidant and Restrictive Food Intake Disorder (American Psychiatric Association, 2013)

Figure 1: Diagnostic criteria for Avoidant & Restrictive Food Intake Disorder

A. Eating or feeding disturbance (including but not limited to apparent lack of interest in eating or food; avoidance based on the sensory characteristics of food; or concern about aversive consequences of eating) as manifested by persistent failure to meet appropriate nutritional and/or energy needs associated with one or more of the following:
Significant weight loss (or failure to gain weight or faltering growth in children)
Significant nutritional deficiency
Dependence on enteral feeding
Marked interference with psychosocial functioning
B. There is no evidence that lack of available food or an associated culturally sanctioned practice is sufficient to account alone for the disorder.
C. The eating disturbance does not occur exclusively during the course of Anorexia Nervosa or Bulimia Nervosa, and there is no evidence of a disturbance in the way of which one's body weight or shape is experienced.
D. If the eating disturbance occurs in the context of a medical condition or another mental disorder, it is sufficiently severe to warrant independent clinical attention.


Figure 2: Diagnostic criteria for Anorexia Nervosa

A. Restriction of energy intake relative to requirements leading to a significantly low body weight in the context of age, sex, developmental trajectory, and physical health. Significantly low weight is defined as a weight that is less than minimally normal, or, for children and adolescents, less than that minimally expected.
B. Intense fear of gaining weight or becoming fat, or persistent behaviour that interferes with weight gain, even though at a significantly low weight.
C. Disturbance in the way in which one's body weight or shape is experienced, undue influence of body weight or shape on self-evaluation, or persistent lack of recognition of the seriousness of the current low body weight.
Restricting Type: During the last three months, the person has not engaged in recurrent episodes of binge eating or purging behaviour (i.e., self-induced vomiting or the misuse of laxatives, diuretics, or enemas).

Date added: 24 May 2016

Hi,

I started with the Aspbergers diagnosis which covers so many of the issues and worked forward if that's the word, onto the other issues . My youngest drinks masses of milky hot chocolate , hence the calcium intake . I buy Catering tins of Cadburys hot chocolate !

What I didn't realise was more boys have anorexia than girls and they are now realising so many of Anorexia cases are on the Spectrum. Probably more than what's recognised if our cases are to go by.

My youngest had poor feeding from birth. We were nearly up to nasogastric tubes . He virtually stopped eating at 18 months . To be honest it was probably before that , he was small birth weight , was induced because of it . They put it down to preeclampsia in a fourth pregnancy , probably both issues looking back . Professor PlanetAutism might have some research somewhere to confirm my theory.

Had the normal tosh. It's a age thing, terrible twos, he will grow out of it . I have heard of one person who eats fish and chips every day of his life . Another whose diet consists of avocado pears and hard boiled eggs . So what ! Worry if they stop drinking , that's an emergency situation .

Glad it's given you an insight . I love Luke Beardons blog .Easy to understand , extremly informative .

Pat xx

Pat is right about the connection between anorexia and ASD.

Our eldest eats normally, our youngest is the opposite, she overeats and is obsessed with food but because she has ADHD she's always leaping around and burns it off. Various eating issues are common in ASDs and body image concerns is probably about the need for control.

I am SO glad I found this discussion! My 18 yo has been hospitalized once for malnutrition 3 years ago. She (although she prefers nonbinary pronouns, I'll say 'she' for posting) was a pretty picky eater starting school age. I remember making lunches was tricky-she liked butter and bread mostly. And sweets! In middle school she shot up in height but weight stayed consistently low. She looked anorexic, but it wasn't due to body image, just selective eating from sensory issues and anxiety. She was diagnosed with Asperger's at age 9. School has been horrible from 4th grade on. She dropped out of HS several weeks ago. The most she's weighed is 105 lbs and she's 5'6". The other day she weighed herself and she's down to 97. When she was 89 she was hospitalized (against her will). But when she passed out in the hospital doing the orthostatic test standing, she realized she had to be there. She had a seizure in April (I think due to dehydration and not eating). She has poor self regulation and doesn't always know when she's hungry or thirsty. She doesn't exercise, spends all her time in bed (mainly) on computer. I've taken her to so many therapists and doctors and called so many services all to no avail. Even the pediatrician has said repeatedly that she's "helpless and hopeless!"

Hi PA and all

I was recently talking with the Clinical Lead for the Adult Autism Centre in NHS GGC and this topic cropped up. As far as I can recall she mentioned that there were cases where individuals, in particular females, had been wrongly diagnosed and treated for eating disorders for years when in fact they had ASD, Asperger's or possibly PDA, and it was a way for them to have control over something in their lives. And when the ASD/Asperger's or PDA was diagnosed and correct treatment and guidelines implemented there condition improved greatly. I think the ASD was being masked by the eating disorder and in my experience Clinicians always opt for the most obvious diagnosis first and often miss what the underlying cause and correct diagnosis is, the professionals refer to it as differential diagnosis.


Don't know if this is any help.

Geraldine

Thanks for the above, ARFID is a good fit for both my boys and myself and probably both of my sisters the whole of my childhood was centred around people trying to make me eat a more balanced diet, I was labelled faddy, fussy, picky a nuisance etc cue constant visits to doctors, blood tests which took four adults to hold me down for each time then I would go into shock and faint after. All to prove that I wasn't deficient in anything even iron... Even when pregnant. They were baffled, how can a child that eats only chips, instant mash, bacon, marmite sandwiches, crisps and breakfast cereal with milk not be lacking... Thank goodness my parents gave up and just fed me what I wanted and I did ok, I'm a bit short but otherwise ok, although learning to eat some new things in adulthood has probably lead to me now being a bit on the large size Ive gone from a skinny child to a curvy mum. Strangely I have discovered that I am actually allergic to quite a few things that I naturally avoided. We too use allergy when eating out as it is much more easily understood and responded to they don't want to be sued for making you sick.

I just thinking this fits with my boys also as part of their asd etc. Oldest became fussy at weaning and after having norovirus several times over a year around age 2-3. It got really bad and he was referred to dietician when he was only just maintaining his weight living on rich tea biscuits and toast. We were very lucky with the dietician she said not to panic but to build from what he would eat using similar shapes, colours and textures starting with very small amounts, so we went from orange coloured carrot stick snacks to actual carrot sticks in small steps and gradually built across from that. He now eats salad everyday and has a reasonable range of plain foods eaten. We did have a concerning time when he went off milk and would only drink milkshake,very bad for his teeth until we found lower sugar powder, seems to be ok growing well almost as tall as me and not yet twelve. He has recently discovered cooked cheese on pizza etc so the calcium issue is not a worry just need to keep him active as he seems to be getting his puppy fat. All early pointers to his aspergers etc but you only see it looking back.
My PDAer is currently living on a diet of chocolate, biscuits, crisps and crackers and the occasional apple or slice of cucumber, very worrying but at least he still drinks milk at the moment. The super sweet diet, screen based life style and lack of proper tooth brushing is a worry but I have to deal with things one day at a time. He's eating, he's got enough energy, he's not currently over or underweight and is growing so whilst it's not perfect there's a lot to be ok about. Again pointers to his having PDA if the professionals will listen.
Good luck to all I know some of you have major issues with food going on taking the pressure off and moving in small steps has helped us

I've just read through replies. In my experience there are things I can do to support my daughter, but it is evident that the difficulty in being able to eat is so deeply entrenched that she can't always overcome her resistance to eat, even if she wants to. I've had plenty of small successes, but I have to accept that many times she will go hungry and I cannot project my fears on to her.

* I ensure she keeps hydrated by an assortment of hot and cold drinks, this is particularly important when she's on a 'food drought'.
* When she says she slept badly I comment "it will improve soon when you aren't feeling hungry, perhaps tonight you'll have some nice dreams" and offer her hugs (e.g. indirect reminding of the need for food to sleep).
* I ask her for a shopping list and she will give it to me verbally (she won't write it down, not will she visit the supermarket - she is agoraphobic).
* offering choice of her restricted foods before making/cooking it and informing her what other family members will be eating in case she would like to try. Sometimes she might try a little (not often).
* calling her downstairs to get her own food and decide what condiments she might like or perhaps some cucumber etc. (she is bedroom based and can't always come to get her own food).
* taking the food to her if she doesn't come for it - I know when to expect her not to come - it is when she is in a 'food drought' and she is avoiding everything; in this circumstance its likely she will not eat the food or perhaps a tiny amount. If she is not in a 'food drought' I will call her several times and eventually she will come.
* making sure where she could sit at the table has something that might draw her attention like a card, an object, a pretty placemat etc - invite her to sit (90% she will return to bedroom). Pretending I don't know what music to ask for on the Alexa dot and umming and ahhing about choice and she will request it, her chosen music helps reduce anxiety which allows her to stay longer.
* not watching her when she eats - sitting at the side of her not opposite.
* allowing her the control of whether she eats the food or not, listening to what she says with compassion. Sometimes I will remind her that her body is hungry she can't feel it, or suggest she tries a little to ensure she has better sleep - these are very gentle suggestions and I do put put my own will on her (and I don't show any disappointment if she says she can't eat it). Recently, it's been successful sometimes when I say, "it's ok, thank you for telling me, now it won't go to waste and somebody else will have it", sometimes she changes her mind and tried a little.
* with no pressure around what she consumes, she is able to describe the reason why she can't eat sometimes. She feels it will get stuck in her throat, or she can't swallow, or she can't have food inside her at the moment because she feels empty and she needs to feel empty at that time... A relationship of trust can be built on listening to these reasons and not showing emotion except compassion "that must feel horrible for you"' "would throat lozenge help?"' "it sounds like a lovely drink might help, what would you like, a hot or cold one?", "perhaps something sweet might help you swallow?", "would an ice lolly help?" Normally she says "no" to these suggestions. Most importantly, she feels understood and cared for.
* giving her snack bowls of what she can nibble on. She describes needing to nibble quite often - I have linked this to a sensory oral issue. This gave me the opportunity of raising a healthy balance in a non-pressurised way e.g. "that sounds like a nice idea for you. So you enjoy your snacks I'll make sure you have healthy ones and some treats so that you don't have too much sugar and feel rubbish, then you can choose". Her snacks are spiralled or grated carrot, garlic cheese crackers or sweet things.
* when she eats a meal and enjoys it I describe why I liked my own meal and ask her to describe hers. This keeps her in touch with her senses and teaches me more about her preferences to do with texture etc. Eg. the same meal can be cooked slightly differently and it may seem crunchier or softer - she is aware of these differences. This tell me she has a sensitive palate (sensory based).
* every now and then I say "you deserve something nice to eat, how about something you don't normally have, have you got an idea?" I will suggest a food that she used to eat and stopped eating to prompt her.
* when she gets very distressed about not being able to eat I tell her it will pass, it always does. I make sure she gets lots of sensory back rubs to keep her in tune with herself. I remind her of her beautiful skin, hair and nails and say they're all lovely because she gives them nutrition.
* if her sleep is reversed I ensure she isn't alone through the night and hungry - the hungrier she gets the harder it is for her to eat. This means I cook and prepare food around the 24h clock to sustain her health.

NB. my daughter so far will not engage in food preparation despite me trying various ways e.g. washing veg, chopping veg, opening tins, looking at recipes, neither will she stir food on the hob. She will look in the fridge and freezer for me if I am lucky enough for her to be in the kitchen and not in her bedroom.

My original post was asked for a friend whose daughter shares reduced and restrictive eating, that young girl was worse than my own daughter at the time. My own daughter has a BMI of 23 and is in the lower range of healthy. Because of this her eating difficulties have not received any attention despite her having been under CAMHS for 15 months. She has had eating difficulties since being 5 years old shown she began school. Her distress and pain around food has been ignored by professionals. They do not appreciate that she is in the healthy weight bracket because I gave up my job, I am here 24/7 ready to provide something if she can eat it. It is literally round the clock care because she has a sleep disorder. Her appetite is severely reduced when her sleep reverses from night to day - thats when her anxiety levels are highest. We have not yet been able to reduce her anxiety levels much in the home. She had a breakdown 16 months ago.

I should add neither has CAMHS shown attention to her sleep disorder that she has had since being 5 years old when she began school and which affects so many things including internal regulation problems

I thought I'd share this with others. I don't know if its helpful or not.

The webinar mentioned goggling Elizabeth Shea for research papers on ARFID. I kept losing the link to the webinar so I didn't capture everything said and will hopefully listen to it back.

Rachelace, thank you so much for sharing this with us. You are clearly doing a wonderful job and have really understood the needs of your daughter. I'm sure this has been an incredibly challenging situation but I'm confident the strategies you have adopted will be very useful to other families, so thank you for taking the time to write.

Could Cerebra help with the sleep disorder? https://w3.cerebra.org.uk/help-and-information/sleep-service/

http://gnc.gu.se/english/gillberg-s-blog/it-s-high-time-we-recognise-feeding-difficulties---eating-disorders-in-children-with-autism

Going back to the original post about eating issues and ASD.