Anorexia and ASD

I have a 16 year old daughter .  Diagnosed with an eating disorder last July and awaiting an autism assessment.  She won’t engage in any therapy (says it doesn’t help ) she’s extremely anxious all of the time and the last few months here have been really tough . Don’t know if we can private message at all but here to chat if you need to mo .  Totally get we’re you’re at x

I am in my thirties, autistic and female.

I identify with almost everything TBC and fisharefriends said. 

I have experienced 2 separate experiences of restrictive and avoidant food disorder (a term that more readily fits with my presentation as opposed to anorexia) the first lasting 10 years and the second just 2. The triggers underlying mine were: desire to fit in and be accepted  (everyone was on a diet and trying to be thin) high levels of (at the time unidentified) anxiety, grief that I wasn't able to express verbally. 

My difficulties with food also have a sensory element to them.... When highly anxious my tactile system becomes really sensitive (in the past I have shaved off all my hair because I couldn't tolerate the feel of it). Tolerance to different textures of food as well as OCD is what restricted the food I would eat. 

I didn't know at the time I was autistic, I was diagnosed only a few years ago. The diagnostic experience was difficult but ultimately has given me greater insight. This site has definitely been a huge source of support throughout.

For me I have found it helpful to do the things that help regulate my nervous system... Like drawing. Now that I am a healthy weight I also cycle and swim and run which helps with my anxiety (although at the time of my WD these did also become obsessions). I have also found yoga hugely beneficial for developing a more healthy sense of caring for my body and developing my ability to identify and release tension. The mind and body are so connected that it makes sense that once I learnt to relax my body it also helped my mind. I know for people that are very underweight they may not be able to do yoga or exercise. 

Hope you have found something of use in our responses and I wish you and your daughter all the best. Please post any other questions you may have as things progress..... there are always people here to offer support and whatever they can to help. 

Hi,

I'm 26, female, have had an ED since my late teens, and am just now figuring out that it's likely I'm autistic. 

I think what TBC said about anxiety makes a lot of sense to me too. Whenever my mood is better, anxiety is always the thing that creeps back in, a constant presence. I know a lot of that can be then projected onto food and behaviors around it, and being out of control of those things certainly causes an increase in anxiety. Also, being in a constant state of hunger/malnutrition can make the anxiety quieter, there's less scope for your brain to overthink things when it's using all it's energy to just keep you going. 

I think also it can depend on the underlying cause for it all. I know this isn't always something that's easy to figure out, I've been through years of counseling/therapy/psychiatrists and I still feel like there are things I don't know, but I can give you some of my insights. For me, I think a lot of it stems from just a desire to fit in, to be accepted by others. As though somehow, if I looked 'perfect' (or at least society's belief of perfect), and I was polite, and inoffensive, and worked hard, there would be less reasons for me to stick out, in a world where I already felt like I didn't fit. I think I also often spent a lot of time feeling like I was too much. I'd be too excited about something, or too emotional, or too annoying, so I compensated by making myself less, physically. Again, if I was less, smaller and inoffensive, then people would overlook these other traits about me that were less desirable. 

I know as well, that this feeling of 'wrongness' with the world can leave me feeling like it's often just too much, that I can't cope with the world, and that it's unlikely that I ever will. And this kind of thinking has definitely left me feeling suicidal, and I know that I have clung onto my ED in part because of this. I know that ED's are a slow form of suicide, and it feels like my only option. I'm not saying this is a constant feeling, or that your daughter may be suicidal, but just that it's possible, and it's very likely that ASD and feeling like there is nowhere that you fit in the world often couple together. 

So yeah, after a bit of my life story, I would maybe say that talk therapy could be helpful. Just getting to unpick some of what's causing her to feel the need to hang onto those behaviors, and maybe process some of that. But it's not a quick fix, and it can also be a destabilizing process to go through, it can get worse before it gets better. I'm also on medication (imipramine) which I think has helped, at least in lifting my mood somewhat, although it took a long time to find one that did make a difference, and many I was worried about due to weight gain often being a side effect. 

I really hope you find something that works, for both you and your daughter. x

Hello!

I am a 34 yr old woman with ASD. I suffered from anorexia for over a decade.  I did not realise at the time that I was extremely anxious and had been all my life - I could not identify my own feelings due to the ASD so really struggled to engage with any sort of talking therapy.  Similarly to your daughter, I had OCD and anorexia was really just a facet of that and and the underlying anxiety. I also really struggled with black and white thinking around body image - everyone told me I was ill but I looked just like the models that other women aspired to so, in my mind, people who said I was too thin were lying. I am now medicated for anxiety and have recovered from my eating disorder. Recognising and getting a handle on my anxiety really helped me to fight the compulsive urges in a way I couldn’t before.  I think what people often don’t realise about recovery is that the anxiety you feel when you are looking ‘better’ is so much worse than the impact of the eating disorder when you are ill.  That was my experience any way.  I really needed my parents to recognise that what they were asking of me when they wanted me to eat a meal was absolutely huge - they did not at the time and were very angry with me which I think is why it took me until adulthood to recover. 

Hi My son has anorexia and has recently been diagnosed with ASD. He suffers with anxiety which can make him eat less, but we are working through it. One of the things that helps is to let him know what may happen before an event / situation so he can cope with it when it arrives. We have also been learning about how to let him sit with his anxiety as opposed to taking it away, this is so difficult to do. The thing that has been the best for us is Family therapy which usually doesn't involve our son but he is then told what the plan is for the next week or few weeks ahead. He is quite rigid in his thinking and will try to restrict but we are now aware and have told him this is a problem and so work towards being flexible, working with him and being very honest. 

I hope this helps you in some way