Adult Eating Disorder getting triggered more in Lockdown?

It's really frustrating that you don't get any follow-up support once you have your diagnosis. I heard a really good quote about functioning labels the other day (I wish I could credit the person, but I can't remember who said it): 'high functioning means your challenges are overlooked, and low functioning means your assets are overlooked'. 

I don't think group therapy would work for me either; masking would be a big problem for me. I'd be more conscious about how I was coming across to the group than how well my recovery was going. 

I have heard a lot about the links between autism and eating disorders - it's mostly anecdotal, but there does seem to be a real link. Purple Ella and YoSamdySam each have a video about their relationship with food on their YouTube channels.

I've found that some of my GPs are amazing and others just don't seem to take me seriously. If you're worried about your GP's response, it might be worth going straight to the mental health service. I'm not sure on the cost, but if you want to go private, it may be that there are therapists out there who have experience of both autism and eating disorders (the NAS might be able to recommend some?).

I'm glad I was able to help in some way - feel free to drop me a message if you ever want to talk.

Hi, thanks for clarifying. I am kind of the other way round to you.   I got a test, a diagnosis, told I was high functioning (and I suspect this means "turns out we don't need to help you , so off you go, bye"), and that was the end.   It didn't include any mental health support before or after the diagnosis, and it implied I have to get referred and queue up again for that.   

The eating disorder was in my childhood and I self- discharged at 18.  Treatment for eating disorders is often group therapy, and when i last went to group therapy I ended up copying new habits and tricks from the other group members to make my disordered eating and exercising even more extreme, and I weighed myself constantly in an effort to lose more weight from week to week, which would impress the other members. We all wanted to shock one another with something. Some of them got piercings and shaved their heads. All in all it was not good for me.  

 In my head I imagine going to the GP and explaining that I now see my eating disorder through a new lens due to autistic diagnosis, but somehow when i play through the imaginary scenario, there are so many ways it can go badly and I don't get the outcome that is best for me. 

I don't trust the administration of the health services and its a lottery even which GP I see since I am only allocated to a health centre and not a specific doctor.   All of this plus bad experiences in the past, stops me doing anything and in the meantime I have the occasional "acute" day or week when I relapse badly. 

Your comments have been really helpful, that i need to do something in order not to stay stuck on this spot, so thanks. 

Unfortunately, this isn't post-diagnostic support. I've been on the autism assessment waiting list for a very long time! The support I'm getting is through the standard NHS mental health service so, whilst it's not autism-specific, it's better than having no support at all. The last therapist I saw was really helpful and very willing to learn more about autism.

Wow, I don't even have any post diagnostic support. I was diagnosed and that was that. I don't even know if I am entitled to get anything while corona is the priority. 

Sorry to hear you're having a tough time. I don't have an eating disorder, but I have found that lockdown is majorly triggering my mental health conditions. I suppose that anyone with a pre-existing mental health condition is likely to struggle more in times of stress and uncertainty.

I've self-referred for therapy again - maybe it'd be worth looking into any support you could get? I'm with my local NHS mental health service and they're offering online, telephone, and video therapy to support people during lockdown.

I hope you're able to get some support and feel better soon.

I understand, that happened to me after the Manchester terror attack in 2017 except I just lost my appetite rather than counting calories and so on. If it makes you feel better, the doctor said it's considered an eating disorder if you're doing it deliberately and if it's just anxiety, it isn't. :) 

oh crikey, the all locked in together situation I understand. Ive had a few meltdowns. ive bought myself headphones and play podcasts now as my husband is very noisy all of the time it was draining me

I have had exactly the same thing. I'm living with my parents and in recent years I'd be having takeaway junk food at least every weekend and snacking on a daily basis for sure. Lockdown has improved my eating habits as my parents are shocked that I'm having too much junk food but depression (sometimes because I feel bad about being autistic and I've done things that make me look bad) has made me feel unmotivated for exercise. I look at my peers and notice how they get nice bodies by going to the gym regularly. I find eating junk food makes me feel comfortable along with having a huge appetite but lockdown with my parents is making me do it less.

By the way, 3 stone is awesome, kudos! 

It's a good point you make, that the shopping has become a drama. It's also made me a bit obsessed. You have this one  chance to get stuff, and it needs to be worthwhile. The food has become this precious commodity. Initially I've been losing weight due to a kind of orthorexia about strict rules and exercise but now I can't stop planning what to eat. And I'm going off my favourite foods, they seem to taste disappointing, like it wasn't worth the effort. 

Hi Plectrum 

I have been overeating and definitely getting worse. Not because of not not being able to go out but more to do with the shopping drama. I am ordering more sugary things and spend a lot of the day just thinking about what I’m going to eat next. I did lose 3 stone but know if I carry on it’s going to go back on quickly. I then can go the other way and obsess to much about calories. 
so really understanding your pain.

I too eat way too fast - annoys people I go out for meals with intensely - not that I can handle restaurants too often. I wish I could be more restrained with food, but when I’m struggling there is no ‘off’ switch to my problems :(

hi, thanks for your comment Anthony.  I think that eating / not eating / weird or disordered eating brings a form of escape from real life or a way of avoiding emotions, and in autism we have problems with emotions anyway. There are other complexities of course but I think it's nearly always caused by something that would normally provoke an emotion in a NT person but instead triggers me.   There's also something about having control and being demand avoidant that makes me want to control food in an extreme way. 

Maybe there's also some basic sensory comfort in stuffing our mouths. I have always eaten meals way too quickly, sometimes without chewing properly.

I wish I could find a substitute for the urge to carry out the eating disorder. 

It’s not quite the same but in essence I eat too much often when low, and it seems to be the professionals belief that my low mood links in to the autistic traits (can’t say I fully understand their logic) but as I’ve been feeling really low in lockdown I’ve been overeating a lot. I know it’s a bit different but indirectly I kind of get where you are at.