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Support for recently diagnosed ASD (18yrs) also suffering with eating disorder

Daisy

Hi, my daughter (18years) has recently been diagnosed with ASD and we suspect she may have ADHD too. Has also been suffering with anorexia for 3 years. We are now aware there is a strong link between autism and eating disorders. I’m after advice of where to turn for help next. Seem to be lost with little sense of how to find the best and most appropriate treatment for her. We have received camhs eating disorder help and have now transitioned to adult mental health services. It isn’t helpful. My daughter just doesn’t want to engage with FBT or general talking therapy to recover. Says no one understands her and the anorexia remains a constant hold over the way she lives her life. We think understanding her ASD would really help, but we don’t know who to go to for help? She doesn’t want to read a book about it, doesn’t like you tube , or online help, and won’t attend any support groups. One to one therapy is probably the best option but we don’t know who and how to start looking. Any advice would be appreciated. We need to be very careful that whoever she speaks with has an understanding of anorexia and autism. Looking at the NAS directories, BEAT and psychology today directories….. we are going round in circles! Does anyone know which directories are best ? Does anyone here have experience of ED and ASD? 

Parents

  • Hi, I am autistic and I’ve struggled with food for a while. I was actually misdiagnosed with anorexia nervosa, which caused a lot of harm, and the NHS has now removed the diagnosis but it means that I have some experience engaging with different services.

    It is common for autistic individuals to have issues around food  and functional digestive system disorders also appear to be common, which can contribute to these challenges. Sensory elements can play a role (eg. Taste, texture etc), and being autistic can make it harder to make changes as many autistic individuals rely on routine and struggle with change. There are quite a lot of studies on links between autism and different eating disorders. I looked through a lot of primary literature at the time (I’m a scientist). You could take a look at the PEACE pathway website:https://peacepathway.org 

    Sadly in my personal experience, there was little understanding of autism amongst eating disorder teams and very little flexibility. In my case this caused a lot of harm, as my issues around food stemmed mainly from my digestive issues and being autistic (love for routine etc- ARFID type issues). I wasn’t able to find adequate support via the NHS unfortunately despite repeatedly trying (also called BEAT etc). I was lucky that my university helped fund some sessions privately with a dietitian who has experience working with autistic individuals as well as with eating disorder patients. I have continued working with her for the past years and it has made a huge difference to my life. I am happy to provide her contact details in case that might be an option? She’s been very good at also pointing me towards other sources of support. 


    In terms of therapy, I’ve also tried various options via NHS and whilst abroad- not much helped me but I recently started working with a therapist who is autistic himself and it’s the first time therapy has actually been helpful to me. This has not been to address any food related issues as I’m doing quite well with that but it has been helpful for me.  

    I also had a look at this book at some point: https://www.cambridge.org/core/books/picky-eaters-recovery-book/168F111767FE845BAB7229F7D19070B5 . It is mainly on ARFID but I do think there was a chapter on links with anorexia nervosa as well. I didn’t end up using any of the strategies in here but it was insightful. It might be worth seeing if your daughter can identify with some of the ARFID type symptoms - in some areas in the UK the NHS is now starting to offer support for ARFID (unfortunately not in my area- when I got the diagnosis they essentially discharged me and said we don’t treat that)- if they do in your area, that team might have more experience in working with autistic individuals as many individuals with ARFID are autistic.

    I wish I could share some NHS based sources of support to look into. I hope you find appropriate support for your daughter. It is so important to have someone who understands autism. I do hope your daughter is being medically monitored by a GP though in the meantime? 

    Best,

    Ann

Reply

  • Hi, I am autistic and I’ve struggled with food for a while. I was actually misdiagnosed with anorexia nervosa, which caused a lot of harm, and the NHS has now removed the diagnosis but it means that I have some experience engaging with different services.

    It is common for autistic individuals to have issues around food  and functional digestive system disorders also appear to be common, which can contribute to these challenges. Sensory elements can play a role (eg. Taste, texture etc), and being autistic can make it harder to make changes as many autistic individuals rely on routine and struggle with change. There are quite a lot of studies on links between autism and different eating disorders. I looked through a lot of primary literature at the time (I’m a scientist). You could take a look at the PEACE pathway website:https://peacepathway.org 

    Sadly in my personal experience, there was little understanding of autism amongst eating disorder teams and very little flexibility. In my case this caused a lot of harm, as my issues around food stemmed mainly from my digestive issues and being autistic (love for routine etc- ARFID type issues). I wasn’t able to find adequate support via the NHS unfortunately despite repeatedly trying (also called BEAT etc). I was lucky that my university helped fund some sessions privately with a dietitian who has experience working with autistic individuals as well as with eating disorder patients. I have continued working with her for the past years and it has made a huge difference to my life. I am happy to provide her contact details in case that might be an option? She’s been very good at also pointing me towards other sources of support. 


    In terms of therapy, I’ve also tried various options via NHS and whilst abroad- not much helped me but I recently started working with a therapist who is autistic himself and it’s the first time therapy has actually been helpful to me. This has not been to address any food related issues as I’m doing quite well with that but it has been helpful for me.  

    I also had a look at this book at some point: https://www.cambridge.org/core/books/picky-eaters-recovery-book/168F111767FE845BAB7229F7D19070B5 . It is mainly on ARFID but I do think there was a chapter on links with anorexia nervosa as well. I didn’t end up using any of the strategies in here but it was insightful. It might be worth seeing if your daughter can identify with some of the ARFID type symptoms - in some areas in the UK the NHS is now starting to offer support for ARFID (unfortunately not in my area- when I got the diagnosis they essentially discharged me and said we don’t treat that)- if they do in your area, that team might have more experience in working with autistic individuals as many individuals with ARFID are autistic.

    I wish I could share some NHS based sources of support to look into. I hope you find appropriate support for your daughter. It is so important to have someone who understands autism. I do hope your daughter is being medically monitored by a GP though in the meantime? 

    Best,

    Ann

Children
  • in reply to Ann :)

    Hi, I just wanted to add on a few more things that I thought of. Here is another directory of counsellors that have experience with neurodivergence. I found my current therapist via this directory. I don’t think there is a rigorous vetting process to regulate who can advertise via the directory though so I would suggest checking they are accredited and have relevant qualifications: https://neurodivergenttherapists.com/directory/

    This is the dietitian who has helped me immensely and who had experience working with autistic individuals and with eating disorders: https://www.dalianutrition.com 

    I hope you find the support that is right for your daughter.