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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

  • Ultimately, if you aren't sure yourself, then I would be surprised if professionals would know for sure if your ED was related to ASD or something else. It is quite possible for it to relate to both. Humans don't have completely separate brain regions - there's tonnes of interconnectivity - so it's quite possible there's some mix. Maybe it started from one type of trigger, but maybe it has evolved beyond that, too.

    The most important thing is that you are getting adequate support. Perhaps it is worth exploring both avenues to see how they work for you. Regardless of the source of the ED, it's whether the support type helps you or not that's most important.

    If SEDS have been struggling to treat you as you put it, then maybe it's worth trying something else. Unless, you think SEDS were helping and you could see a benefit in continuing. I can imagine things like this take plenty of time and positive outcomes may take a while to appear. If you haven't yet tried an ASD-led approach, then you may not know yet if this will be a good match for you.

    I was going to share my experience, but it doesn't really relate to yours because I never got professional support for my ED. It was at its worst more than 2 decades ago, too. I think it was a mix of ASD (probably most strongly triggered by this, I'd guess at least 90%) and maybe some classical influences from peers. But it's really hard to tell and categorise what caused it. I may never know where it all began. All I know is that if it returns today, It's most likely to be ASD related, because today is all I can go on.

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  • Ultimately, if you aren't sure yourself, then I would be surprised if professionals would know for sure if your ED was related to ASD or something else. It is quite possible for it to relate to both. Humans don't have completely separate brain regions - there's tonnes of interconnectivity - so it's quite possible there's some mix. Maybe it started from one type of trigger, but maybe it has evolved beyond that, too.

    The most important thing is that you are getting adequate support. Perhaps it is worth exploring both avenues to see how they work for you. Regardless of the source of the ED, it's whether the support type helps you or not that's most important.

    If SEDS have been struggling to treat you as you put it, then maybe it's worth trying something else. Unless, you think SEDS were helping and you could see a benefit in continuing. I can imagine things like this take plenty of time and positive outcomes may take a while to appear. If you haven't yet tried an ASD-led approach, then you may not know yet if this will be a good match for you.

    I was going to share my experience, but it doesn't really relate to yours because I never got professional support for my ED. It was at its worst more than 2 decades ago, too. I think it was a mix of ASD (probably most strongly triggered by this, I'd guess at least 90%) and maybe some classical influences from peers. But it's really hard to tell and categorise what caused it. I may never know where it all began. All I know is that if it returns today, It's most likely to be ASD related, because today is all I can go on.

Children
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