Parent's primer on eating disorders: give this page 63 minutes

Okay, I have a new favorite resource for parents!

In 63 minutes, broken into pieces for your convenience, Packard Children’s Comprehensive Eating Disorders Program has provided videos from the "It's Time to Talk About It" Panel Discussion they did for National Eating Disorders Awareness Week this year and it is absolutely wonderful.

I can honestly say that a parent new to this diagnosis will get a better start by watching these well-done presentations than anything else out there. These are authoritative, accessible, and up-to-date.

Watch them all, but take special note of the last video clip, by Dr. James Lock. What he says in that tape about the history AND THE PRESENT is vitally important for parents and for the rest of the eating disorder world to hear.

It is time to talk about it, but more to the point it is time to STOP talking about some things as well.

Comments

  1. Hello Laura,

    May I call you Laura? My name is Kathe Hall and I am an anorexic. I am both recovered and recovering. I celabrated my 37th birthday in January of this year, and I have been dealing with ED for over 3 decades now. I am recovered in that I chose to start eating again, and don't get me wrong there are days when I don't want to eat but do it anyway. I also say that I am recovering because the wires are crossed and it is slow going to do the so-called rewiring of the brain and to teach myself how to live again. It all comes down to the choices that we make. Having been so immersed in the life of an anorexic, I am well aware of the Autistic/ Apsberger's aspects of the illness and withdrawl from the world around me, all the while knowing just what it was that I was doing to myself and those around me. To be fare I kept the secret from my parents for quite some time. They suspected but never confronted the issue head-on and lived far enough away that I was able to continue as I was for quite some time. I was never hospitalized, nor did I involve myself in any group(s) as I refused to take any drugs that might otherwise alter myself in any way. To this point I have done it alone, and that is not to say that I would ever wish my journey upon anyone else, but it had to be a road to recovery of my choosing. I could not sign a release form stating that I would take any and all drugs thereafter prescribed to me. I still feel a great sense of disconnect from the world and people around me. Perhaps that is part of the autistic, anorexia, Aspberger's spectrum and perhaps it is a boundary of my own construction as a means of self-preservation. I have purposely set goals for myself that force me to interact with others, sometimes pushing myself past any preconcieved notions of the outcome. I have taken Maui Thai (kickboxing)and belly dancing as a way to reconnect with my femininity and to learn confidence as well as joined a band wherein I am learning to play the drums and cymbals. I recently completed a series of works for an artshow based upon my many years experience dealing with Anorexia titled "Diary of a Recovered/Recovering Anorexic". I am getting out and telling my story so that maybe others will come out and learn about the illness and come to understand that the previously extablished beliefs governing the spectrum do not necessarily apply any longer.
    I know that many of us, EDs or otherwise, manage to find niches wihin the confines of society but it is often at great cost as we navigate the "real world" wearing masks to assimilate and do our best to mirror a normal exsistance. We are all simply trying to be ourselves, which is all the harder when societal norms allow us to slip through the cracks and common labels do not fit.
    My apologies for my ramblings. I have spent so many years in silence.
    On a last note, I would like to wish all moms of EDs, ASP and AUT children (no matter the age of the individual) a very Happy if belated Mother's Day.
    Please rest assured that none of it is your fault, please know that, and give yourself a much needed break from the monkey on your back(s). IT IS NOT YOUR FAULT! :)
    Be good to you,
    K

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  2. To Kathe (above):

    I am a 44 yr old woman who started to recover from anorexia nervosa (AN) when I was 40 yrs old, after 28 years of AN. I also have many Asperger characteristics, as do my father and my brother. These characteristics were present pre-AN and they persist post-AN; however, weight gain + better nutrition + making efforts to socialise have helped me to integrate into the world.

    If you would like to contact me I'd be really interested to connect with you. I know it can be lonely facing recovery from AN when we are no longer in our teens/20s..

    Laura - I hope you don't mind me writing to Kathe via your blog, but I'm not on MySpace...

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  3. Hi Laura

    I've just watched the last two videos by James Lock. He makes a really salient point about a 5 year 'window of opportunity' for treatment during adolescence. The implication is (largely...): if the patient hasn't recovered during adolescence, then basically there's not-so-much hope for them.

    The data he presents from RCTs are important, but the question I would ask is 'what about those patients who don't respond to family based treatment (FBT)?'. The conclusions derived from RCTs are based upon statistics; i.e. the balance of probabilities. Thus, a systematic review of RCTs of FBT vs. other treatments show that that FBT is the superior treatment - i.e. more patients recovered/improved with FBT vs. other therapies. However, as in all RCTs there will always be non-responders, which would include people like myself. I was treated at home by my (supporting and loving) family as a teen, but didn't respond positively. This was not due to any fault of my parents; it was most likely linked to my co-morbid difficulties and my difficulty with self expression as a kid.

    Nevertheless, I agree that on the balance of probabilities, parents are NOT directly to blame for EDs and that to recommend separation of child from parent is usually inappropriate.

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  4. Excellent, brilliantly clearly presented.

    As usual it made me cry with frustration at my own failure, but that's my problem!

    If you bump into Dr Lock I'd be fascinated to know what the difference is between AN, BN and EDNOS in terms of what FBT looks like and what the most important component of FBT is - I'd bet he'd say it was the parental alliance and I'd go off on another guilt trip, but I'd be interested to know!

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  5. Kathe and Cathy, I am delighted to help you two get in contact. I love connecting people.

    We have to keep in mind that the scientific record on eating disorders is almost empty. There are only a few RCTs AT ALL. Most of the 'research' and 'data' on eating disorders are case studies and clinic statistics and population studies.

    It isn't time to complain about the data we HAVE from RCTs - to criticize it for what it hasn't studied or doesn't help with. It is time to build that base of knowledge by adding more real research. Put some pins on the board before we start swiping them off.

    Virtually all of the actual eating disorder treatment going on in the world is based on NOTHING but opinion. Much of that opinion was flawed - often horribly so, and dangerously so in practice.

    No, we don't know what will help best for those who don't or can't use FBT. We need to know. But without establishing SOMETHING out there we have nothing to build on.

    I do very much sympathize with those who didn't get or were not appropriate candidates for FBT but this can not, in my opinion, be in any way a reason to downplay or question its efficacy where it can be offered. This pessimism about FBT based on what it doesn't and can't do has a negative effect on the climate around it.

    This is like criticizing a first line antibiotic because it can not work for everyone. First, lets get some things into use that can work, at the same time making sure those who are not responding have SOME alternative.

    But at this point nearly EVERYONE is being offered the alternative and we have abundant evidence of the dismal results of that.

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  6. Hi Laura

    In response to my comment above you wrote: "It isn't time to complain about the data we HAVE from RCTs - to criticize it for what it hasn't studied or doesn't help with....".

    First, I was complaining, and second I wasn't criticising - at least in a context of negative criticism. I was simply pointing out that with all studies based on samples, whatever the research design (RCTs, epidemiological studies etc.) the conclusions drawn are based upon statistical probability. Therefore, there will always be people who respond differently to the majority. Given that FBT has been shown to be the most efficacious treatment for children/adolescents with AN then it makes sense that it is used as an initial therapy where possible.

    I am the sort of person whose mind works by logic rather than emotion. Sometimes that 'ruffles feathers' because people think I'm being pedantic when I view things from a different angle. I worked in biomedical research for 20 yrs - which taught me to be objective/unbiased.

    Please be re-assured that first, my above response was not an emotive one (i.e. I was not complaining), and second, that my intention was not to be negatively critical. I was simply considering alternative viewpoints in a non-biased manner. I very much agree with you (and James Lock et al...) that past assumptions that parents caused their children's AN are largely unfounded.

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  7. Sorry, I made a mistake in my last comment; it should have read:

    Hi Laura

    In response to my comment above you wrote: "It isn't time to complain about the data we HAVE from RCTs - to criticize it for what it hasn't studied or doesn't help with....".

    First, I wasn't complaining, and second I wasn't criticising - at least in a context of negative criticism. I was simply pointing out that with all studies based on samples, whatever the research design (RCTs, epidemiological studies etc.) the conclusions drawn are based upon statistical probability. Therefore, there will always be people who respond differently to the majority. Given that FBT has been shown to be the most efficacious treatment for children/adolescents with AN then it makes sense that it is used as an initial therapy where possible.

    I am the sort of person whose mind works by logic rather than emotion. Sometimes that 'ruffles feathers' because people think I'm being pedantic when I view things from a different angle. I worked in biomedical research for 20 yrs - which taught me to be objective/unbiased.

    Please be re-assured that first, my above response was not an emotive one (i.e. I was not complaining), and second, that my intention was not to be negatively critical. I was simply considering alternative viewpoints in a non-biased manner. I very much agree with you (and James Lock et al...) that past assumptions that parents caused their children's AN are largely unfounded.

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  8. HI Cathy - I agree you weren't being emotive - I was the guilty party there!
    Of course everything possible should be done to ensure that what is at the moment the only evidence based first line of treatment for many sections of a very vulnerable populations, is offered to all suitable candidates on diagnosis. I wonder how much is known about the numbers - what proportion of people are offered FBT, what something else, what nothing. I come from a weird perspective having been offered FBT and nothing but. I now realise how unusual that was, even here in the UK where "Maudsley" was developed and would like to know what types of treatment are being offered out there.

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  9. Greetings Ladies,

    I would like to point out that much of the research lacks valid info upon which to base treatment given the fact that many suffering do not come forward, and if they do it is quite often too late to be of any assistance. Here in Canada, there is a serious lack of funding for one to both help and or to do the research. There are also holes where young people fall through...the priority being youth between the ages of 14 and 18. As you know this age group represents such a small percentage of those suffering. Age is no longer a clear indicator of sufferers, I myself started at an age much younger that. many children are showing signs at age 5 if not younger. Top that with the fact that many of the organizations who ARE trying to help are so severely underfunded that they deam with Anorexics and Bulimics in the same group. While many may not see the harm in that, they may both be EDs, they are completely different in their manifestations.
    Back to my original thought...many with ED or any of the autistic, aspbergers symptoms are much like abuse survivors in that they are mistrustful of those in a position to be of any help. I am trying to finds ways to help these organizations get a first hand accounting of the symptoms, the emotional viewpoints of those who actually deal with ED et all on a daily basis. Perhaps if more of us came forward and spoke up about why it is that we do what we do perhaps the winds of change might blow a little stronger in thier direction. Most of the data is antiquated at best and terribly misguided. I do not blame them in the least as someone had to come up with an idea, a theory about the illness and a possible solution and unfortunatley we (EDs) weren't talking.
    So needless to say more than a few mishaps along the way, here we are, blogging and finally talking, our families are more involved than ever, and will not let others suffer silently.
    Laura, I commend you, and thank you for taking the time to establish your blog and connect people all over the world. staying abreast of new information and new treatments is all the more important now. I have been doing all of the research myself for years and have only just begun to reach out looking for people who understand and have dealt with these issues both personally and as a family member of friend.
    I had 4 young ladies dealing with Anorexia come out to my art show. As well as a group of girls from a troubled teens home. The fact that we were all able to open up and discuss ED together was a huge step, both for me and for them.

    Communication is the key.

    I will be in touch. Thank you, again, ladies.

    Kathe

    PS- Cathy (UK) how do I get in touch with you?

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  10. Kathe, are you on YouTube? The best way to contact me is by sending me a message via my YouTube page: www.youtube.com/user/misstiggykins

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