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Eating disorder and ASD

Lucy

Hi,

I have recently received an ASD diagnosis. For the past year I have been having problems with my eating and referred to lots of different people, I am currently with SEDS (specialist eating disorder service). They have been struggling to treat me, and now with my diagnosis they are putting my eating problems down to the ASD and don’t think I have an ED (eating disorder)

For a bit of background, I have always been a “picky” eater but last year when COVID began I started to restrict my intake and became very obsessive with my weight. I am still struggling with my eating, still have bad thoughts and still losing weight. 

The SEDS have now referred me to autism services and are about to discharge me, even though I still have characteristics of someone with an ED. They believe it is all to do with my ASD and wanting control. 

I am putting this post out there to see if anyone has any related experience or advice, anything would be appreciated.

Thanks.

Parents

  • Just want to send you love. I've had an eating disorder since I was 12 (for over 20 years!) and whilst it seems impossible it can be something you live with and you can experience happiness alongside it. I just see it as a chronic condition; I've given up hope on ever getting rid of it completely but whilst that sounds depressing and scary, it doesn't mean I have a miserable or 'abnormal' life. I'm happily married and work as a primary school teacher. My ED is acting up at the moment - being a teacher through this whole Covid saga has been really tough and continues to be and of course we have no idea when things are going to get back to 'normal'. Our SEDS is actually pretty good; I've been very lucky and they've looked after me quite well for a long time now. The psychiatrist is fab and is actually the one who referred me for Autism diagnosis. I don't like the sound of how your SEDS are treating you - of course your ASD should be taken into account, but they should still keep an eye on you, if only for medical reasons, and also support you through the Autism diagnostic process. Do you have a good relationship with your GP? They could help advocate for you with the service? As a bit of an old hand at this, I feel like it's important you're being monitored, both physically and psychologically.

    I really do wish you all the best. My mantra is, 'Some days are good, some days are s**t, I don't have the answers, just please don't quit.' I have it written in Sharpie on my mirror. Keep going. A great thing for the management of EDs is keeping distracted in a healthy way - I'm a big fan of adult colouring books and word searches.

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  • Just want to send you love. I've had an eating disorder since I was 12 (for over 20 years!) and whilst it seems impossible it can be something you live with and you can experience happiness alongside it. I just see it as a chronic condition; I've given up hope on ever getting rid of it completely but whilst that sounds depressing and scary, it doesn't mean I have a miserable or 'abnormal' life. I'm happily married and work as a primary school teacher. My ED is acting up at the moment - being a teacher through this whole Covid saga has been really tough and continues to be and of course we have no idea when things are going to get back to 'normal'. Our SEDS is actually pretty good; I've been very lucky and they've looked after me quite well for a long time now. The psychiatrist is fab and is actually the one who referred me for Autism diagnosis. I don't like the sound of how your SEDS are treating you - of course your ASD should be taken into account, but they should still keep an eye on you, if only for medical reasons, and also support you through the Autism diagnostic process. Do you have a good relationship with your GP? They could help advocate for you with the service? As a bit of an old hand at this, I feel like it's important you're being monitored, both physically and psychologically.

    I really do wish you all the best. My mantra is, 'Some days are good, some days are s**t, I don't have the answers, just please don't quit.' I have it written in Sharpie on my mirror. Keep going. A great thing for the management of EDs is keeping distracted in a healthy way - I'm a big fan of adult colouring books and word searches.

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