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Eating - disorders and how to get help/advice

Murcy

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.

  • in reply to Murcy

    I was assessed on the NHS and the OT works for them. I think they may have asked if I would like some sessions and I said yes and the OT contacted me.

  • in reply to RachelO

    I was assessed via right to choose, so not directly on the NHS.  When I asked the GP for autism counselling support they basically said there's nothing in the area and to ask the NAS for help.  I feel more and more that GPs aren't particularly interested especially as I'm getting older and I decline to use pharmaceuticals most of the time.  Can I ask if you were assessed on the NHS and how your report came to be in the hands of the OT?

  • in reply to Murcy

    When I did my autism assessment an OT contacted me after because of my support needs  for sensory in the report. With my borough you had to have moderate needs and above in sensory to be referred to an OT for sensory support. Perhaps you could contact the team who assessed you for advice or see an OT elsewhere.

  • in reply to RachelO

    Thank you Rachel.  How did you go about seeing the OT? I feel that my GP surgery do as little as possible and I always have to find the information for myself to request the referral I want/need.  Basically I have to be my own GP and do their work for them which is exhausting! I wish we could self-refer for everything, it would be a lot easier than having to use a middleman.

  • I have been diagnosed with an eating disorder in my life and also autism. I saw an OT and they did a sensory test for me which includes taste. An OT may be able to do this test with you. It is called an ASH Spiral test. The OT I saw came from the autism team so this was their field.

    I relate to what you wrote about the temperature of food.

  • in reply to Mr.Methodical0

    Thank you Mr.  It always helps when others share their experience. 

  • in reply to Nicola Mod

    Thank you Nicola. The links are very helpful. 

  • I can relate to the difficulties with eating Murcy. I also become concerned about food temperature getting too hot or low: For too hot, I worry about burning and damaging my mouth; for too low, I worry about getting food poisoning. For myself, I believe this relates to a fear of negative consquences, rather than just sensory difficulties.

    I also find it difficult to know how much to eat and at what time, which can lead to both undereating and overeating. What I find most confusing is that I can eat exactly the same meal, with exactly the same measurements, but feel very different after the meal depending on a variety of different factors which are not necessarily under my control.   

    I hope you are able to obtain the support you are seeking. 

  • 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