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Eating disorders and PDA
  • Rachelace
    Posts: 57
    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.
  • Holly59
    Posts: 1,782

    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
    Posts: 57
    Thank you so much for your reply. Hearing about your son too at a whopping 6ft 5!! The reduced eating 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 that can become extreme 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
  • Holly59
    Posts: 1,782

    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
  • Holly59
    Posts: 1,782

    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.



    https://dragonriko.wordpress.com/2016/04/29/pda-and-healthy-eating/

    I knew I had read something from this amazing lady as well !

    Pat xx
  • PlanetAutism
    Posts: 3,200
    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.
  • Holly59
    Posts: 1,782

    PlanetAutism said:

    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.



    https://www.autismspeaks.org/science/science-news/birth-complications-and-autism

    This is interesting .

    The youngest was low birth weight, I had preeclampsia.

    So many of our children could have been monitored closely and the issues have been missed all these years .

    Pat xx
  • mangomama
    Posts: 1
    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!"
  • PlanetAutism
    Posts: 3,200
    Goodness mangomama, do they have your daughter on IV fluids and feeding tube etc.?
  • gerry
    Posts: 34
    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
  • PlanetAutism
    Posts: 3,200
    Yes I was aware of this gerry, and there is absolutely no excuse because research evidence exists that anorexics have high rates of autism traits. Typical NHS response, treat the symptom not the cause.
  • June67
    Posts: 105
    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.
  • HarHer
    Posts: 79
    Thank you for this thread.

    My youngest (undiagnosed but with a working diagnosis of ASC and all the traits of PDA) exercises strenuously every day, restricts and regulates his food; seems obsessed about how much/little other people are eating and has recently started binge eating - seriously binge eating.

    He tries to control his father's eating (father is a bit overweight) but does not seem to control me with respect to food (probably because I had a serious eating disorder when I was younger).

    In short, his relationship with food is unhealthy,obsessional and linked to control. Of all things the binge eating scares me. He has his own money (PIP) and yesterday he bought and ate: 4 scones, a family tub of ice cream, four choc-ices, two family sized bars of chocolate, a packet of ham and two packets of biscuits. The sugar content must have been enormous.

    He is 16 and slightly built, but these binges occur about twice a week and the rest of the time he rigidly controls what he eats.

    I think his problems with food get to me more than they should because I had some very serious issues with eating and was hospitalised frequently during my teens and early adult life and the extreme control, punctuated by crazy binges is a pattern that is all too familiar to me.

    So yes, I think there is a link between autism and eating disorders.
  • June67
    Posts: 105
    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
  • PlanetAutism
    Posts: 3,200
    Thankfully mine don't have those serious issues. Fussiness and texture/taste issues with some foods and youngest a bit obsessive about food (always eating between meals) but as very ADHD with energy so burns it off.

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