I don't have an eating disorder cause I'm autistic

The psychiatrists who diagnosed me with the eating disorder were both autism specialists as well as working with the eating disorder team but 6 months later my eating disorder diagnosis was still taken away cause "it's just my autism, I don't have an eating disorder" 

I think they're starting from a base assumption of "autism is a boy thing, eating disorders are a girl thing" and then the logical conclusions from that incorrect assumption are that a) nobody has both and b) it's not worth training anyone on an overlap they they believe doesn't exist. It's a fundamental misunderstanding of eating disorders AND autism AND gender.

I don't like to gain weight, I want to be physically smaller and worry about eating more and gaining more weight. 

But my diagnosis was taken away and I was told it's only my autism 

Also if you want to share some more details on your struggles with eating, I might be able to see if I can relate to any of it. Not that I have figured my own eating issues out yet, though I am learning more and more with time (and the help of my dietitian) 

Sorry if I wasn’t very clear, I meant that there are people who may be able to help you, like the professional  in the documentary but it may take some searching to find them. She recognised the autistic relationship with food displayed by some of the patients and tailored the treatment to them rather than treating them like more typical ED patients

that's awful.... they really have so little understanding of autism and eating disorders... So many autistic people have issues around food. I think many of us have digestive issues, anxiety is common which doesn't help with eating, sensory issues also make it more challenging. We may not be great at feeling hunger/fullness. Love for routine and struggling with change... so it makes sense even just with those facts that eating/food can be more challenging... They really don't get trained properly on these issues. 

Hi, I am so sorry this happened to you.I also had a very bad experience with the eating disorder services- they are very ill equipped with any issue that doesn't fit into their neat categories... At the time I didn't know I was autistic. I have had digestive issues my whole life, and have always been a picky eater but I started having more issues with eating and food about 8 years ago. Now I understand that my issues are very much related to stress and anxiety which worsen the digestive issues and I also have ARFID traits as I can easily get stuck eating only the same food or meals over and over in same pattern, plus lots of anxiety that foods will trigger nausea/IBS attacks... But the eating disorder service didn't believe me when I said I wasn't loosing weight intentionally- And I wasn't and never have, in fact I was distraught and so frustrated about loosing weight ... Their 'help' was very counterproductive. I got discharged over the vacation as I moved home abroad and when I was referred again, they agreed they were not the right service to help me and that I should seek counselling elsewhere which I didn't receive. But the eating disorder team wreaked enough havock- I kept trying to convince myself they must be right and it resulted in a lot of unkind behaviours towards myself and I never got to the root of the issue which is stress and anxiety and my autistic love for routine, sensory sensitivities and struggles with change... 

Luckily  I have had an amazing dietitian who has been much more than just a dietitian- She takes a very individualised and very holistic approach- in fact we now sometimes barely mention food. She has provided so much support and has helped me see that stress and anxiety play a huge huge part- it took a few years for me to really start acknowledging it. I was very lucky that my university initially helped fund session with her whilst I was waiting for help from the NHS- home | dalia weinreb (dalianutrition.com) . She is actually the person that realised I might be autistic upon which I ended up asking for an assessment.  

And yes I agree it is so frustrating that they make such a hard separation between eating disorder service and other mental health services- only recently my GP and I were desperately trying to get me some kind of support  for mental health and mainly anxiety and stress. So we thought that we were being particularly smart by doing referrals for everything we could think of- CBT, but also eating disorder service as the GP and I reasoned that maybe they would be able to give some kind of counselling too and that I might be seen more quickly there given my low weight at the time.... It was a bad idea as the eating disorder service were slower than the other services and I have now had to fight to not be discharged by the other services as when they see 'eating disorder service' their immediate reaction is we don't deal with that and will not provide any support and will discharge you. Luckily, the counsellor ended up agreeing with me that the mental health service is right from me as in fact I really need stress/anxiety management help. But yes, I can relate to your frustration about this.... 

I really hope you do manage to get support because it isn't right that you are just left on your own, simply because their categorisation doesn't work.  

I had a related but different experience- the first time I asked a GP to refer me for autism assessment she refused, and after hearing about my sensory issues with food and the changes I had to make due to IBS she wouldn't accept any explanation except "making excuses to cover up an eating disorder". Nope, just autistic with a common comorbidity that makes it even harder to eat a healthy and varied diet.

Your problems and mine stem from the same issue though: a serious lack of understanding from a lot of healthcare professionals when it comes to eating disorders, autism, and how those two things interact. The interdisciplinary care teams are few and far between, which is a real shame.

Hi Lilac. I think that GT was maybe thinking, as I was, that it's a complicated continuum that even the professionals haven't fully mapped. So whoever told you that your eating disorder is 'just ' autism has been reductive about it to your detriment. Which is a shame. I hope you can get to a place of feeling more at ease with what sound like healthy steps you've been trying to take, but it sounds like you've not been treated well there. The lady in that documentary would be appalled I suspect, at how you were dismissed in that way. 

No I haven't watched it but how does it relate to my very specific situation. I got told my eating problems are just autism and I don't have an eating disorder, not that I have both. 

Have you watched the recent documentary on BBC about Christine McGuiness and how she’s dealing with her autism diagnosis? She spoke to a lady about how she noticed her ED facility had to change their practice when they had autistic girls admitted. I can’t remember where she worked now may have been Maudsley