Eating disorder service.

Hi

Iam new to the forum and have a 14 year old autistic daughter,high achieving on the spectrum.I wanted to ask if anyone has experience of eating disorder services.My daughter has recently been rediagnosed with ARFID.

Thanks.

Parents
  • Hi…I can’t offer you the advice you are looking for but I would like to ask how you managed to get a diagnosis of ARFID? My 12 year old daughter has just been diagnosed with autism (high functioning) and one of the main issues is her limited food intake. All I hear is ‘well she’s not underweight so don’t worry’…no she’s not underweight because she eats 3 packets of crisps a day and half a tub of Nutella!!! We have raised ARFID as a concern but can’t seem to get any support. CAMHS have rejected us twice. Would really like to hear about your experience. Many thanks. 

  • Hi

     With great difficulty I'm afraid.We weren't listened to by the CEDS and I decided to seek a private resolution. That's when my daughter was rediagnosed as not anorexic.The problem is that there is very little research and understanding of the links between ASD and sensory issues affecting eating.We have had to fight tooth and nail to the point where I was going to make an official complaint. 

Reply
  • Hi

     With great difficulty I'm afraid.We weren't listened to by the CEDS and I decided to seek a private resolution. That's when my daughter was rediagnosed as not anorexic.The problem is that there is very little research and understanding of the links between ASD and sensory issues affecting eating.We have had to fight tooth and nail to the point where I was going to make an official complaint. 

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