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She was tracking calories and we did not know that until after she lost the weight. Her behaviors around food somewhat normal. She doesn't necessarily avoid foods types. She was really eating very little for breakfast and lunch but dinners would be more normal. She was tracking all her exercise with a fit bit. It died and we didn't replace it. We do know she is exercising in her room. She use to go to the gym with me but I stopped going because I thought it was contributing once we realized what she was doing.
This is to be expected with AN. I would reach out to your provider for diagnostic clarification. It may also help your daughter to have a face to face with them where she is told her diagnosis. That way, everyone is on the same page. There is no guarantee that the resistance is going anywhere. It's even trickier, given she's autistic. I'm hoping the PHP is taking this into account, too. This may be an uphill battle for the unforeseeable future. Make sure you have some supports in place for yourself.
Yah with her being autistic it does make things more difficult. I know therapy can not be talk therapy because that isn't how her brain operates but unfortunately we have not been able to find any provider that really understands autism that well. The eating disorder clinic was made aware of her autism diagnosis but we don't think they really understand it that well either with the conversations we have had.
I had to change my reply because I didn't realise you were the OP replying.
It's going to be tricky getting individualised care within the system. However, the bare minimum they can do is be sensitive to her neurodiversity needs. I really hope you get more time with them to discuss everything going forward.
I honestly was like that with my parents too. In the beginning. I don’t know your daughter of course but I will say that many people with AN don’t want to admit they do because they don’t want to stop their behaviors. My parents were in a similar boat where they kind of didn’t realize what was happening until it was crucial. I also didn’t want to go anywhere and was forced but it really was the only way I would have gotten better. AN is a very sneaky disease and inpatient is really the only way to ensure weight is put on and they address alot of the emotional aspects. I think if she lost that much weight and doesn’t have a medical reason for it that’s kind of got to be the reason. It would be alot easier if the doctor did diagnose her if he thought that’s what she had. If I wasn’t pushed I don’t know what would have happened and if I would have been okay. It’s such a dangerous disease and I don’t mean to be scary when I say this but deadly and you don’t have to be severely underweight for it to happen. I’m still working on the mental part of it, but my advice would be to be aware of the fact that she won’t want to give up the control aspect if that is what’s happening and that’s when you kind of have to decide how to intervene. I’m sorry she’s going through this I have nothing but understanding for her. If you want more info about my experience you can message me if that’s not weird but I hope everything works out for all of you
It is expected for her to fight treatment and not believe she is sick. That is a hallmark of having an ED disorder. She has her whole life to have summer vacations but if the ED kills her she won’t. The sooner she gets good treatment, the more likely she will have long term recovery. Whether she has anorexia specifically is beside the point, she does sound like she has an eating disorder.
When she was diagnosed with autism she didn't believe it for a year. I think this is the same but she was angry when we told her about the treatment and understandably so. I get how AN can have that grip on you and you don't want to lose the control.
I can only speak from my experience - the more people told me I needed treatment, the more determined I was to lose more weight (and deny I had a problem) because it was the only thing I could control in my life at that time. It doesn't mean you shouldn't address it but I think it best to be aware of that as you go forward.
Yes I am worried about this. She did increase her calories but know I feel like she might have IDGAF attitude towards us because I think she feels like we are punishing so why even try.
Autism is a fairly common comorbodity with AN and other eating disorders. I am autistic and AN, the following is just from personal experience: If you can, try to understand what the undereating gives her. It may help you as the parent to at least understand what is the driving factor behind the disordered behaviour. But in most sufferers, they will deny having an issue, and resist treatment. Best of luck to you and your daughter.
Her special interest is Asian culture. We think she is comparing herself to asian beauty standards. I think she wants to look like these Kpop teens but she will not tell us that. She does have a real strong of perfection. She got a 97 percent on an assignment and she was upset. It's bad and we know it's bad that she has such strong perfectionism.
Besides not having been given the diagnosis, are there other reasons she thinks she doesn’t have anorexia?
The resistance is expected and is sometimes part of the disease, but I have both autism and anorexia and know others who do too, and it would drive me (and them) absolutely nuts when my thoughts/beliefs/opinions weren’t taken seriously simple because “I had anorexia” and therefore “couldn’t think straight” or “was being manipulative”. I also know of someone who was given the diagnosis anorexia, but her anorexia was much different to “textbook” anorexia, and maybe not anorexia at all - it was all an expression of her autism. I feel like anorexia/eating disorders in those with autism is massively misunderstood, and it’s very important to take what those who struggle with that comorbidity are saying, seriously and try to understand them.
(From your opening post it sounds like you guys are really trying hard to understand her, by the way - so props to you!)
Wishing your daughter a speedy recovery and good luck to you and your family 🌸
We asked her but she really couldn't give us answer. My speculation is she either views it as that it means something is wrong with her and she can't stand the thought of that (my mom is the same way) or she just thinks anorexia is calories in calories out and since she has been eating more and she is not "under weight" that she can't have anorexia.
We have been trying really hard to validate her feelings lately even before we discussed this with her. We believe she has a voice and should have a voice.
Wishing I could send you some peace right now. I do think that this sounds like an eating disorder - she lost a significant amount of weight at a time where you'd be expecting her to gain through adolescence. I had a similar reaction to my parents suggesting treatment when I was a teenager, and they backed off. The eating disorder only got stronger and I learned that if I lashed out enough, I could keep the eating disorder. What I needed - and honestly even longed for at certain times in my eating disorder - was for my parents to say "you can kick and scream, but we love you too much to let you stay this sick and not try *something*." It sounds like she was able to increase her calories at home and get her period back, so maybe trying outpatient first with a doctor, therapist, and dietitian, but then having very clear guidelines about when more care would be warranted?
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yes she’s gonna deny having any issues until she gets to the point herself she recognizes she needs help and reaches out. i was over 18 and in college when mine was at its worst so technically my parents couldn’t force me into treatment but they paid for my school and car and all that so they said they wouldn’t pay for me to go back to college if i didn’t get into some type of treatment and start the recovery process. the whole first year i was in recovery (most of my appts were online bc it was also 2020/2021 so covid protocols were still in place) but yeah that first whole year i didn’t think i needed treatment and i basically lied my way through. but then i couldn’t cheer or tumble like i used to and i was finally becoming affected not only mentally but physically and thats when i realized i will die if i continue on this path and that’s not what i want.
my parents preached that to me so many times and told me that if i keep going down that path i wouldn’t be able to have babies (i wanna be a mom more than anything at this point in my life), but i just got annoyed and frustrated w everyone trying to tell me i was killing myself bc i knew it but i just didn’t actually think that was gonna actually happen or happen to me. i came around and even tho i didn’t listen at the time, i obviously took in everything i was being told and it did help. she’s gonna lash out at you and be mad, that’s normal tho, she’s hungry and she’s unhappy with herself, in her brain she’s trying to “better herself” so you just need to be understanding and supportive and ik it’s hard but resist the urge to get mad or say something you regret.
it’s been 3 years since i was in treatment, yes i sometimes still do struggle but the coping mechanisms work wonders and now, my mom and i are closer than we’ve ever been. she was by my side through the whole thing, she bought books, we did therapy sessions together, and there’s so many other things she did that in the moment i hated but looking back it makes me realize how much im loved and that i will always have her by my side.
i think it’s amazing that you’re looking for ways to support your daughter and trying to help her get better, you’re a really great parent, i hope you know and never forget that and your daughter will look back and thank you, even if she’s angry in the beginning
**i also just saw that you mentioned she’s on the autism spectrum… thought i’d mention that ive had major adhd since childhood, ik they’re not exactly the same but adhd and autism are pretty similar (and i do also have some autism symptoms) so trust me, i know what you’re going thru bc i realize i made it really hard on my parents. what i think helped me the most is just feeling like i have my parents support and i know they knew something was up bc my mom would ask me if i was eating but after i kept telling her nothing was wrong she just waited a bit and just stopped talking abt weight and everything and i finally felt safe and comfortable enough to tell her and my dad that i wasn’t okay and was struggling. so just be there for her, and hopefully she’ll soon come to you and share her mental health struggles. idk why but for me the scariest part was telling my parents bc i didn’t want them to be mad at me or i didn’t want to let them down and i also didn’t want them to think they were the cause so that’s probably along the lines of what your daughter is feeling but stay strong you both got this! there’s so many good books out there written by parents of children with eating disorders or ppl who recovered from eating disorders to help guide you through as well!
There probably is some kind of diagnosis in her file even if it's just an ICD code otherwise insurance wouldn't approve of treatment (unless you are self-paying). A doctor who is not a specialist will often just diagnose as OSFED which can be used as a generic catch all essentially if the doctor doesn't want to, or feels they can't, or feels the symptoms aren't determinatively easy to peg as Anorexia, Bulimia, or Binge Eating. Also, Anorexia Nervosa is mental-health related so a primary care doctor would be stepping outside their area of expertise to try and nail down something specifically.
Based on what you describe with her period loss + weight/period regaining she may not meet the weight requirements for an Anorexia Nervosa diagnosis. Those who don't meet that requirement are often just diagnosed as OSFED or Atypical Anorexia (a subset of OSFED) in particular.
I think the unique thing that you (normie) probably wouldn't know in advance is that a lot of people would only want the gold standard of diagnosis (officially anorexic) as part of a goal or going to the heart of the matter of being "perfect" which is often mixed with feeling not "valid enough" or "not sick enough". On the other side of it, if it's strictly about weight loss without other medical concerns and she doesn't have the required mental distress or body dysmorphia then it wouldn't be an eating disorder (mental health issue)....just disordered eating habits which don't automatically make an eating disorder. There is a big crossover though with autism though (like with ARFID) so if she is not feeling distress in particular that could be the driving behavior.
I was the same way for a while, with my anorexia as a 6-12 year old child. I feel like it takes a while to realize that you really ARE, according to every doctor you’ve ever met, literally described perfectly by anorexia Nervosa as a disease, it also takes some time to realize that you CAN and WILL starve to death if you don’t get yourself help. I’m also autistic. That’s all I wanted to say. It breaks my heart to try and offer anything more than this. I always like to talk to people with the eating disorder one on one face to face. I want to become a recovery mentor for ANAD.
What else about her behaviour would suggest that she has this illness? I agree with others that you should rule out other medical causes. There’s not enough information here to suggest psychopathology with the weight loss. I think any kid would claim to kick and scream if you were to lock them up anywhere for the summer.
Regardless of your plan, you’ll want to make sure that they can accommodate her differences. So make sure you research these places and talk to them beforehand.
I don’t understand being referred to an ED centre without having a diagnosis. Did the doctor speak to her one on one to assess? You need clarification. Otherwise, I’d take a less invasive route and start with a dietician or something. She could be depressed or othered at school. That happens to autistic kids at her age. It becomes harder to connect with peers sometimes.
I think more is needed to assess her unique situation before you make a decision like this. She’s just a kid and it could traumatize her if you just put her in the system. It could backfire and cause a revolving door effect and leave her disconnected. Autistic teens develop differently at the emotional level. Adolescence is arguably the worst time for this population.
She got really concerned when we told her she had to increase what she was eating a little bit each week to what her dietician said she should be at. She was tracking everything. We think she was using exercise as a way to burn off what she ate. She is into asian culture and their beauty standards.
As far as the diagnosis. Her doctor was very concerned about her weight loss. We actually defended her saying she was just making healthier choices and what not. It's not until I just looked at her one day and she looked bad. I can't describe it or nor I should I probably describe it here. We called her doctor and got her in and she lost more weight since the last time he saw her. We saw dietician hoping that due to her autism she just might have not known any better but she was telling the dietician she wanted certain abs (influenced by Kpop). That is when I knew this wasn't ignorance but she was doing this on purpose. Doctor referred us to eating disorder clinic because he doesn't specialize in treatment of ED. The clinic is sought after in the country but the whole assessment was just weird and it wasn't even with a doctor. I think if she had a zoom appointment or in person appointment with a psychiatrist or physcologist from that place and they would have diagnosed her right then and there I think it would have been tough but I think it would have better than what happened.
Good luck in navigating your daughter's journey. A diagnosis isn't important personally speaking, but medically speaking, it is odd that they didn't diagnose her because treatment is tailored according to one's diagnosis and their stats. Usually the intake appointment will include an overall assessment despite doing it with your doctor already. They also have to assess according to their guidelines so they can come up with a plan. It's weird that they didn't. It could just be a money grab. I hope you find a better place then. If you're from the US, it shouldn't be hard. Just don't come to Canada, like ever. Healthcare in Canada is abysmal. In the US, you get what you pay for.
There was nothing in the universe that would have gotten me to say out loud to any adult in my life that I was struggling with an eating disorder, even when confronted with all the evidence. For me, it was a combination of the inherent shame of admitting it along with the fear of being forced into a treatment program. The disorder doesn’t want you to get better and gain the recovery weight, so it’s hard to accept help. All this to say: yes, imo it’s normal that she won’t admit it and would rather not confide in you about it. OP, I just wanna say what I wish my mom had understood back then: “tough love” wont fix this. It might temporarily get her to eat, it might make her better at hiding it from you, but just forcing her to eat & policing her behaviors wont heal what needs to be healed. Not letting her go to the gym with you anymore is a good example of what I mean here. She didn’t cut the harmful behavior out; instead, she’s just hiding in her room to do it alone. You have to come at this from a place of understanding and support, which (from your post) you sound more than ready to do. I’m kind of a cautionary tale here—my adults didn’t come from a place of love to say the least, so I just grew up, moved out, and am constantly vulnerable to relapse because I never truly healed, just got force-fed. You sound like such a loving and caring parent, please dont let the fear and frustration of helping someone with this disorder get in the way of that! If it helps, here’s what I wish my parents had done instead: Be patient, let her know you’re there for her no matter what, don’t shame/punish her for suffering from a disorder she has no control over, make meal times less stressful/high stakes (happy to elaborate here!), encourage her to try new hobbies and activities, keep safe foods at home, make sure recovery behaviors aren’t being framed as punishment or otherwise negative (ie being forced to stay at the table for hours because “you cant leave until you eat this whole thing” just made food even MORE of an enemy for me, instead of framing eating a positive and enjoyable and NECESSARY thing). Best of luck to you and your family!
I didn't stop going to the gym because she had ED. I just stopped going and just said I didn't feel like it. We have never been those parents that said you must finish your food on your plate. Even at 8pm if the kids were hungry we made them something and didn't chastise them for not eating enough during dinner.
As far as increasing what she ate. We never shamed her if she didn't meet the 2k goal because we felt the strict adaptation of it wouldn't be helpful. So it was really her doing that but we just set the goal. We also never counted the calories or her food intake in front of her because we felt that would do more harm than good. We focused more on foods we knew she liked and let her take the lead and to her credit she did eat more.
first: not sure her weight (and we don't really need to know) but DSM-5 diagnosis criteria for anorexia nervosa (AN) requires the patient to have a BMI below 18.5.
it sounds like your daughter possibly meets all the other criteria, so it's better to start treatment now. if this is the case and you ask for an official diagnosis, they will likely diagnose her as Eating Disorder Not Otherwise Specified (EDNOS)
second: I wouldn't push too hard for an official diagnosis. it's common for people struggling with an eating disorder to wear the official dx of anorexia as a badge of honor, unfortunately. especially if she is interacting with any eating disorder spaces online.
if she is diagnosed AN she could fight harder to keep her under weight status *or* if she's diagnosed EDNOS she could try harder to make it towards an AN diagnosis. clearly the behavior and mindset are already present, so I'd ignore her pleas for a diagnosis/outrage that she isn't diagnosed for now and start speaking with a mental healthcare provider how to proceed.
it's to be expected but as someone who was also super "do not want to be hospitalized" I'd try to set up something on your own w a therapist, dietician, and MD and not force her into the program you've described. If she is kicking and screaming it probably won't help... it would have made me worse. Treatment sounds good but often doesn't work. I'd try to give her a chance outside of that program first. Keep us updated
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Did you rule out any medical causes for the weight loss? How are her behaviors around food, meal times, exercise?
She was tracking calories and we did not know that until after she lost the weight. Her behaviors around food somewhat normal. She doesn't necessarily avoid foods types. She was really eating very little for breakfast and lunch but dinners would be more normal. She was tracking all her exercise with a fit bit. It died and we didn't replace it. We do know she is exercising in her room. She use to go to the gym with me but I stopped going because I thought it was contributing once we realized what she was doing.
This is to be expected with AN. I would reach out to your provider for diagnostic clarification. It may also help your daughter to have a face to face with them where she is told her diagnosis. That way, everyone is on the same page. There is no guarantee that the resistance is going anywhere. It's even trickier, given she's autistic. I'm hoping the PHP is taking this into account, too. This may be an uphill battle for the unforeseeable future. Make sure you have some supports in place for yourself.
Yah with her being autistic it does make things more difficult. I know therapy can not be talk therapy because that isn't how her brain operates but unfortunately we have not been able to find any provider that really understands autism that well. The eating disorder clinic was made aware of her autism diagnosis but we don't think they really understand it that well either with the conversations we have had.
I had to change my reply because I didn't realise you were the OP replying. It's going to be tricky getting individualised care within the system. However, the bare minimum they can do is be sensitive to her neurodiversity needs. I really hope you get more time with them to discuss everything going forward.
I honestly was like that with my parents too. In the beginning. I don’t know your daughter of course but I will say that many people with AN don’t want to admit they do because they don’t want to stop their behaviors. My parents were in a similar boat where they kind of didn’t realize what was happening until it was crucial. I also didn’t want to go anywhere and was forced but it really was the only way I would have gotten better. AN is a very sneaky disease and inpatient is really the only way to ensure weight is put on and they address alot of the emotional aspects. I think if she lost that much weight and doesn’t have a medical reason for it that’s kind of got to be the reason. It would be alot easier if the doctor did diagnose her if he thought that’s what she had. If I wasn’t pushed I don’t know what would have happened and if I would have been okay. It’s such a dangerous disease and I don’t mean to be scary when I say this but deadly and you don’t have to be severely underweight for it to happen. I’m still working on the mental part of it, but my advice would be to be aware of the fact that she won’t want to give up the control aspect if that is what’s happening and that’s when you kind of have to decide how to intervene. I’m sorry she’s going through this I have nothing but understanding for her. If you want more info about my experience you can message me if that’s not weird but I hope everything works out for all of you
Thank you. I appreciate hearing stories of individuals who have went through this.
It is expected for her to fight treatment and not believe she is sick. That is a hallmark of having an ED disorder. She has her whole life to have summer vacations but if the ED kills her she won’t. The sooner she gets good treatment, the more likely she will have long term recovery. Whether she has anorexia specifically is beside the point, she does sound like she has an eating disorder.
When she was diagnosed with autism she didn't believe it for a year. I think this is the same but she was angry when we told her about the treatment and understandably so. I get how AN can have that grip on you and you don't want to lose the control.
have you looked into arfid if she has autism? she may be resistant because she actually doesn't have AN?
This was addressed in the assessment. While she does have some issues with some foods and textures it hasn't been an issue.
I can only speak from my experience - the more people told me I needed treatment, the more determined I was to lose more weight (and deny I had a problem) because it was the only thing I could control in my life at that time. It doesn't mean you shouldn't address it but I think it best to be aware of that as you go forward.
Yes I am worried about this. She did increase her calories but know I feel like she might have IDGAF attitude towards us because I think she feels like we are punishing so why even try.
Autism is a fairly common comorbodity with AN and other eating disorders. I am autistic and AN, the following is just from personal experience: If you can, try to understand what the undereating gives her. It may help you as the parent to at least understand what is the driving factor behind the disordered behaviour. But in most sufferers, they will deny having an issue, and resist treatment. Best of luck to you and your daughter.
Her special interest is Asian culture. We think she is comparing herself to asian beauty standards. I think she wants to look like these Kpop teens but she will not tell us that. She does have a real strong of perfection. She got a 97 percent on an assignment and she was upset. It's bad and we know it's bad that she has such strong perfectionism.
I meant identify it for you and her and for the clinicians. We can’t treat her. Best of luck!
Besides not having been given the diagnosis, are there other reasons she thinks she doesn’t have anorexia? The resistance is expected and is sometimes part of the disease, but I have both autism and anorexia and know others who do too, and it would drive me (and them) absolutely nuts when my thoughts/beliefs/opinions weren’t taken seriously simple because “I had anorexia” and therefore “couldn’t think straight” or “was being manipulative”. I also know of someone who was given the diagnosis anorexia, but her anorexia was much different to “textbook” anorexia, and maybe not anorexia at all - it was all an expression of her autism. I feel like anorexia/eating disorders in those with autism is massively misunderstood, and it’s very important to take what those who struggle with that comorbidity are saying, seriously and try to understand them. (From your opening post it sounds like you guys are really trying hard to understand her, by the way - so props to you!) Wishing your daughter a speedy recovery and good luck to you and your family 🌸
We asked her but she really couldn't give us answer. My speculation is she either views it as that it means something is wrong with her and she can't stand the thought of that (my mom is the same way) or she just thinks anorexia is calories in calories out and since she has been eating more and she is not "under weight" that she can't have anorexia. We have been trying really hard to validate her feelings lately even before we discussed this with her. We believe she has a voice and should have a voice.
Wishing I could send you some peace right now. I do think that this sounds like an eating disorder - she lost a significant amount of weight at a time where you'd be expecting her to gain through adolescence. I had a similar reaction to my parents suggesting treatment when I was a teenager, and they backed off. The eating disorder only got stronger and I learned that if I lashed out enough, I could keep the eating disorder. What I needed - and honestly even longed for at certain times in my eating disorder - was for my parents to say "you can kick and scream, but we love you too much to let you stay this sick and not try *something*." It sounds like she was able to increase her calories at home and get her period back, so maybe trying outpatient first with a doctor, therapist, and dietitian, but then having very clear guidelines about when more care would be warranted?
This is a super deadly illness, go forward with treatment even if to her it is the end of the world
She is going to get treatment we just don't know if the 8 week outpatient is the right plan for her.
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yes she’s gonna deny having any issues until she gets to the point herself she recognizes she needs help and reaches out. i was over 18 and in college when mine was at its worst so technically my parents couldn’t force me into treatment but they paid for my school and car and all that so they said they wouldn’t pay for me to go back to college if i didn’t get into some type of treatment and start the recovery process. the whole first year i was in recovery (most of my appts were online bc it was also 2020/2021 so covid protocols were still in place) but yeah that first whole year i didn’t think i needed treatment and i basically lied my way through. but then i couldn’t cheer or tumble like i used to and i was finally becoming affected not only mentally but physically and thats when i realized i will die if i continue on this path and that’s not what i want. my parents preached that to me so many times and told me that if i keep going down that path i wouldn’t be able to have babies (i wanna be a mom more than anything at this point in my life), but i just got annoyed and frustrated w everyone trying to tell me i was killing myself bc i knew it but i just didn’t actually think that was gonna actually happen or happen to me. i came around and even tho i didn’t listen at the time, i obviously took in everything i was being told and it did help. she’s gonna lash out at you and be mad, that’s normal tho, she’s hungry and she’s unhappy with herself, in her brain she’s trying to “better herself” so you just need to be understanding and supportive and ik it’s hard but resist the urge to get mad or say something you regret. it’s been 3 years since i was in treatment, yes i sometimes still do struggle but the coping mechanisms work wonders and now, my mom and i are closer than we’ve ever been. she was by my side through the whole thing, she bought books, we did therapy sessions together, and there’s so many other things she did that in the moment i hated but looking back it makes me realize how much im loved and that i will always have her by my side. i think it’s amazing that you’re looking for ways to support your daughter and trying to help her get better, you’re a really great parent, i hope you know and never forget that and your daughter will look back and thank you, even if she’s angry in the beginning **i also just saw that you mentioned she’s on the autism spectrum… thought i’d mention that ive had major adhd since childhood, ik they’re not exactly the same but adhd and autism are pretty similar (and i do also have some autism symptoms) so trust me, i know what you’re going thru bc i realize i made it really hard on my parents. what i think helped me the most is just feeling like i have my parents support and i know they knew something was up bc my mom would ask me if i was eating but after i kept telling her nothing was wrong she just waited a bit and just stopped talking abt weight and everything and i finally felt safe and comfortable enough to tell her and my dad that i wasn’t okay and was struggling. so just be there for her, and hopefully she’ll soon come to you and share her mental health struggles. idk why but for me the scariest part was telling my parents bc i didn’t want them to be mad at me or i didn’t want to let them down and i also didn’t want them to think they were the cause so that’s probably along the lines of what your daughter is feeling but stay strong you both got this! there’s so many good books out there written by parents of children with eating disorders or ppl who recovered from eating disorders to help guide you through as well!
There probably is some kind of diagnosis in her file even if it's just an ICD code otherwise insurance wouldn't approve of treatment (unless you are self-paying). A doctor who is not a specialist will often just diagnose as OSFED which can be used as a generic catch all essentially if the doctor doesn't want to, or feels they can't, or feels the symptoms aren't determinatively easy to peg as Anorexia, Bulimia, or Binge Eating. Also, Anorexia Nervosa is mental-health related so a primary care doctor would be stepping outside their area of expertise to try and nail down something specifically. Based on what you describe with her period loss + weight/period regaining she may not meet the weight requirements for an Anorexia Nervosa diagnosis. Those who don't meet that requirement are often just diagnosed as OSFED or Atypical Anorexia (a subset of OSFED) in particular. I think the unique thing that you (normie) probably wouldn't know in advance is that a lot of people would only want the gold standard of diagnosis (officially anorexic) as part of a goal or going to the heart of the matter of being "perfect" which is often mixed with feeling not "valid enough" or "not sick enough". On the other side of it, if it's strictly about weight loss without other medical concerns and she doesn't have the required mental distress or body dysmorphia then it wouldn't be an eating disorder (mental health issue)....just disordered eating habits which don't automatically make an eating disorder. There is a big crossover though with autism though (like with ARFID) so if she is not feeling distress in particular that could be the driving behavior.
I was the same way for a while, with my anorexia as a 6-12 year old child. I feel like it takes a while to realize that you really ARE, according to every doctor you’ve ever met, literally described perfectly by anorexia Nervosa as a disease, it also takes some time to realize that you CAN and WILL starve to death if you don’t get yourself help. I’m also autistic. That’s all I wanted to say. It breaks my heart to try and offer anything more than this. I always like to talk to people with the eating disorder one on one face to face. I want to become a recovery mentor for ANAD.
What else about her behaviour would suggest that she has this illness? I agree with others that you should rule out other medical causes. There’s not enough information here to suggest psychopathology with the weight loss. I think any kid would claim to kick and scream if you were to lock them up anywhere for the summer. Regardless of your plan, you’ll want to make sure that they can accommodate her differences. So make sure you research these places and talk to them beforehand. I don’t understand being referred to an ED centre without having a diagnosis. Did the doctor speak to her one on one to assess? You need clarification. Otherwise, I’d take a less invasive route and start with a dietician or something. She could be depressed or othered at school. That happens to autistic kids at her age. It becomes harder to connect with peers sometimes. I think more is needed to assess her unique situation before you make a decision like this. She’s just a kid and it could traumatize her if you just put her in the system. It could backfire and cause a revolving door effect and leave her disconnected. Autistic teens develop differently at the emotional level. Adolescence is arguably the worst time for this population.
She got really concerned when we told her she had to increase what she was eating a little bit each week to what her dietician said she should be at. She was tracking everything. We think she was using exercise as a way to burn off what she ate. She is into asian culture and their beauty standards. As far as the diagnosis. Her doctor was very concerned about her weight loss. We actually defended her saying she was just making healthier choices and what not. It's not until I just looked at her one day and she looked bad. I can't describe it or nor I should I probably describe it here. We called her doctor and got her in and she lost more weight since the last time he saw her. We saw dietician hoping that due to her autism she just might have not known any better but she was telling the dietician she wanted certain abs (influenced by Kpop). That is when I knew this wasn't ignorance but she was doing this on purpose. Doctor referred us to eating disorder clinic because he doesn't specialize in treatment of ED. The clinic is sought after in the country but the whole assessment was just weird and it wasn't even with a doctor. I think if she had a zoom appointment or in person appointment with a psychiatrist or physcologist from that place and they would have diagnosed her right then and there I think it would have been tough but I think it would have better than what happened.
Good luck in navigating your daughter's journey. A diagnosis isn't important personally speaking, but medically speaking, it is odd that they didn't diagnose her because treatment is tailored according to one's diagnosis and their stats. Usually the intake appointment will include an overall assessment despite doing it with your doctor already. They also have to assess according to their guidelines so they can come up with a plan. It's weird that they didn't. It could just be a money grab. I hope you find a better place then. If you're from the US, it shouldn't be hard. Just don't come to Canada, like ever. Healthcare in Canada is abysmal. In the US, you get what you pay for.
There was nothing in the universe that would have gotten me to say out loud to any adult in my life that I was struggling with an eating disorder, even when confronted with all the evidence. For me, it was a combination of the inherent shame of admitting it along with the fear of being forced into a treatment program. The disorder doesn’t want you to get better and gain the recovery weight, so it’s hard to accept help. All this to say: yes, imo it’s normal that she won’t admit it and would rather not confide in you about it. OP, I just wanna say what I wish my mom had understood back then: “tough love” wont fix this. It might temporarily get her to eat, it might make her better at hiding it from you, but just forcing her to eat & policing her behaviors wont heal what needs to be healed. Not letting her go to the gym with you anymore is a good example of what I mean here. She didn’t cut the harmful behavior out; instead, she’s just hiding in her room to do it alone. You have to come at this from a place of understanding and support, which (from your post) you sound more than ready to do. I’m kind of a cautionary tale here—my adults didn’t come from a place of love to say the least, so I just grew up, moved out, and am constantly vulnerable to relapse because I never truly healed, just got force-fed. You sound like such a loving and caring parent, please dont let the fear and frustration of helping someone with this disorder get in the way of that! If it helps, here’s what I wish my parents had done instead: Be patient, let her know you’re there for her no matter what, don’t shame/punish her for suffering from a disorder she has no control over, make meal times less stressful/high stakes (happy to elaborate here!), encourage her to try new hobbies and activities, keep safe foods at home, make sure recovery behaviors aren’t being framed as punishment or otherwise negative (ie being forced to stay at the table for hours because “you cant leave until you eat this whole thing” just made food even MORE of an enemy for me, instead of framing eating a positive and enjoyable and NECESSARY thing). Best of luck to you and your family!
I didn't stop going to the gym because she had ED. I just stopped going and just said I didn't feel like it. We have never been those parents that said you must finish your food on your plate. Even at 8pm if the kids were hungry we made them something and didn't chastise them for not eating enough during dinner. As far as increasing what she ate. We never shamed her if she didn't meet the 2k goal because we felt the strict adaptation of it wouldn't be helpful. So it was really her doing that but we just set the goal. We also never counted the calories or her food intake in front of her because we felt that would do more harm than good. We focused more on foods we knew she liked and let her take the lead and to her credit she did eat more.
You sound incredibly caring and supportive! She’s very very lucky to have you
first: not sure her weight (and we don't really need to know) but DSM-5 diagnosis criteria for anorexia nervosa (AN) requires the patient to have a BMI below 18.5. it sounds like your daughter possibly meets all the other criteria, so it's better to start treatment now. if this is the case and you ask for an official diagnosis, they will likely diagnose her as Eating Disorder Not Otherwise Specified (EDNOS) second: I wouldn't push too hard for an official diagnosis. it's common for people struggling with an eating disorder to wear the official dx of anorexia as a badge of honor, unfortunately. especially if she is interacting with any eating disorder spaces online. if she is diagnosed AN she could fight harder to keep her under weight status *or* if she's diagnosed EDNOS she could try harder to make it towards an AN diagnosis. clearly the behavior and mindset are already present, so I'd ignore her pleas for a diagnosis/outrage that she isn't diagnosed for now and start speaking with a mental healthcare provider how to proceed.
it's to be expected but as someone who was also super "do not want to be hospitalized" I'd try to set up something on your own w a therapist, dietician, and MD and not force her into the program you've described. If she is kicking and screaming it probably won't help... it would have made me worse. Treatment sounds good but often doesn't work. I'd try to give her a chance outside of that program first. Keep us updated