Eating - disorders and how to get help/advice

I was diagnosed with autism last year, aged 57.  I have struggled with my relationship with food and weight issues for as long as I can remember, and now wonder if there is a link with autism.  I am not sure what it is I'd like to ask or how to go about changing things but right now have two thoughts/questions on my mind:

1) I don't like eating food when it goes cold and it dawned on me today that I have burnt my mouth regularly over the years because I like my food (and hot drinks) nice and hot.  At home I now tend to use bowls as they keep the food warm for longer.  I had a meal out today which was served on a large dinner plate (doesn't retain the heat) and by the time I paid for it and took it out to the outside table it was going cold so I ate fast which wasn't great for my digestion and burnt my mouth slightly with the roast potatoes (which weren't great but that's another story, lol).  It all got cold within a couple of minutes and in the end I couldn't finish it and was very disappointed with the meal due to texture (potatoes) and temperature.  

Is this more in autism? I don't necessarily mean the texture thing, more the temperature and the burning oneself.  Or is it quite common in the general population too?

2) I spoke to my GP recently about having issues with food and overating and that I need help with discussing disordered eating but all I got was an email suggesting I self-refer to Mind Matters to talk about why I think I struggle and can't regulate my food intake.  It's taken me a few weeks to decide to try and refer myself but went on the website and was put off by the amount of questions asked because: 

            a) Apart from not liking to talk about myself with strangers, I don't like to think that my information is floating around the internet (certainly don't trust that the NHS and whoever they share it with can keep it as safe as they say they do especially after a GDPR breach experience in recent years)

            b) The referral form appears to have one of those  evaluation questionnaires which drive me potty and which I stopped answering in the last few years ('In the last 2 weeks, have you felt...' Etc, etc).  So I just went back to square 1 and didn't continue with the referral as it started to make me anxious (on the verge of anger).

I'm sorry for the length of this (my first) post but would appreciate any thoughts.  Thank you.

  • Hi Murcy and welcome to the community.  Thank you for reaching out.  As I'm sure you know, food can be a very difficult topic for autistic people for a variety of reasons.  I can personally relate to what you said about burning your mouth on food and drinks that are too hot!  I am sure our other community members will also have their own anecdotes and tips they can share.

    NAS has a guidance page available on disordered eating which can be accessed here, if you feel like it would be helpful to look at: Eating disorders  It includes information on therapies, medication, and how to access help and support.
    There is also a more general page on eating difficulties for autistic people here: Eating

    I hope this information is of use to you, and am wishing you all the very best in tackling this.

    - Nicola Mod