ARFID: No Support

Hi, I just saw the eating disorder service yet again and they have finally seen sense and diagnosed me with ARFID (after previously always assuming it must be anorexia nervosa simply because of low weight, even though the weight loss was always unintentional, I have no desire to loose weight and have no body dysmorphia. I am autistic and I have IBS, sensory sensitivities, a lot of issues with stress/anxiety and a love for routine). However, they have also told me that they don't treat ARFID so that it.... I didn't really expect or want help from the eating disorder service at this point, given that they have been unhelpful in the past and I have some other support. However I still find it shocking that there is NO treatment/support available for people with ARFID. And yet it is so common and can have really devastating effects. 

Has anyone else experienced similar? 

I did tell them at the end that they really should look into setting up treatment for ARFID as there are actually quite a lot of individuals that have it... who knows maybe in a few years they will catch up. Also as far as I know treatment for other eating disorders is not adapted for the needs of autistic individuals. This needs to change. 

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  • Yes, well the only good thing is that at least they acknowledged that they are incapable of helping... and are not doing more harm/damage... but it is shocking. Luckily I have an absolutely brilliant dietitian who has been helping me a lot and I am now finally getting some CBT for anxiety management... so at least this is not a huge disaster for me but it is just one more example of being let down by the system, just because I don't fit neatly into one of their categories... The sad thing is that I think there are so many more people who are being let down or are being given advice/treatment that is counterproductive. I don't know... I hope that maybe one day I can do something about this.