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

Lilac

Years ago I got referred to an eating disorder team when I was nearly 18 (I'm 24 now) they knew I had autism and how it effected things but still diagnosed me with ednos. I didn't really gain whilst I saw them for 6 months and then they had a review meeting and told me I didn't have an eating disorder and they got it wrong, it was just my autism cause I don't like changes. So then they got rid of me and the general mental health people wouldn't help cause they don't deal with eating problems, so I've been trying to deal with it on my own ever since. Has anyone else had an experience like this? 

Parents

  • 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.

  • in reply to battybats

    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. 

  • in reply to Ann :)

    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.

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  • in reply to Ann :)

    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.

Children