The title of this episode is “How to make steps toward food freedom instead of just go all in and you’ll be fine” … going all in is NOT easy. There is a lot of fear that comes up as you can imagine and there are many layers to peel back and many beliefs to unlearn. It’s certainly a process and honestly, it’s the hardest and best thing I’ve ever done in my life.
I’ve had 2 Queens recently reach out asking about recovering from an ED with autism and ADHD. Autism spectrum disorder and ADHD are related in several ways and they have very similar symptoms.
I have invited one of these lovely ladies onto my podcast (to be recorded soon) to have a live recorded coaching session so I can help her and others further to navigate recovery with ADHD. (I work best “in the moment” working with an actual client).
Part of her message to me was this:
“In your professional experience, what would you recommend for a client with autism who struggles with routine change, black-and-white thinking, overwhelm /intense emotions, and severe sensory issues, who also needs to recover from Anorexia? Is there a modified approach?“
I’d like to go into each of these struggles and give an alternative suggestion to recovery that isn’t “all in”. I would like to share that I am not autistic nor do I have ADHD and my opinion is exactly that, my opinion from the information I have been given (not from personal experience) and my knowledge and intuition.
#1 Routine change
Most humans in general like routine but those with autism need routine and structure to be able to cope.
“People with autism need routine and structure or they cannot cope. I think in general, we are also more black & white/rigid in thinking (again, I know this is also common in most people with eds). ‘All-in’ in the sense of abandoning all rules, behaviours, rituals etc, and also eating to full mental hunger no matter what the food/ time, just would have been impossible. And not from the ‘fear of weight gain’ standpoint. Just from the absolute meltdowns that would have happened from routine changes.”
My suggestion to help navigate this would be to actually have a routine. Not a meal plan because they can be relied on too much, but a routine with structure. For example, aiming to eat 3 full meals, 3 snacks and 2 desserts every day. And instead of having a rigid time, I’d suggest having a window of time to eat within.
For example, a day could look like this:
Between 7.30 & 8.30 – Breakfast
Between 10 & 11 – Snack
Between 12.30 & 1.30 – Lunch & dessert
Between 3.30 & 4.30 – Snack
Between 6 & 7 – Dinner & dessert
Between 8.30 & 9 – Snack before bed
Depending on what type of eating disorder the person is in recovery from, will depend on whether the person would be checking in with themselves and their body in each moment and eating intuitively or not.
If someone is in active recovery from anorexia then I would not suggest they check in with their body and themselves to eat intuitively… this is because they are unable to rely on intuitive eating due to the genetic migration response causing their biology to drive them to eat less and move more.
If someone is not in recovery from anorexia then I would recommend still having the above structure and checking in with themselves during eating to see how much they would like to eat. I always encourage eating to full physical and emotional satisfaction. If that takes someone eating a shit load of food then this is perfectly normal and ok. If someone is depriving themselves in any way, that is restriction and that will keep them in the eating disorder.
“You can not recover from an eating disorder if you’re still restricting and acting like a person with an eating disorder.”
Have a plan B for if your routine changes
Life happens and things don’t always go to plan. That can throw some of us off for sure but those with autism will find it extremely difficult to cope with. That’s why I’d recommend a plan B if plan A (the usual structure goes tits up). It’s difficult to give clear examples of what this could be like as life works in mysterious ways but I’ll give it a go.
Let’s say that you got to work and realised that you forgot your lunch and snacks. You’ve basically got to work and have no food with you whatsoever. There goes the regular eating out the window…
Instead of allowing this to throw you into a meltdown and allow the ED to use this as an excuse not to eat or if you are experiencing binge eating disorder, an excuse to “fuck it” and go and eat 20 brownies (used to be me) instead of finding nourishing meals (AND a brownie), you will have a plan B in place.
Plan B in this scenario could look like snacking on cereal bars, fruits, cookies etc that are already in your draw (because you’ve been organised and ready for plan B) around your usual eating time and knowing exactly what you’re going to do for lunch. You know that from the work cafe, you like a baked potato with cheese and beans and so you already know that’s what you’re going to do without having to think about it.
Just having that scenario as a backup can help.
#2 Overstimulation / Overwhelm / Intense emotions
“When I restrict my brain goes numb and is less overstimulated so I can cope a little better with very loud social settings and appear more normal / not have to leave early because it drives me crazy. I think the serotonin hypothesis makes sense… (Some studies point to low serotonin levels in the brains of autistic people.)”
Using restriction to numb is extremely common. I often see it in clients who have experienced trauma as a way to cope via suppression. Restrict your food, restrict your body from nourishment, and restrict your emotions and feelings.
Whilst that can be “helpful” short term if you are completely overwhelmed by emotion and you feel like you can’t cope, it’s extremely damaging long term and the longer this coping mechanism is used, the harder it is to change (but still 1000% possible).
My intuition here is wanting to say PAUS. Take a moment. Tell someone you trust that you’re feeling highly overwhelmed. Acknowledge to yourself that you are feeling this way. Go somewhere quiet (outside, toilet) and remind yourself that it’s ok to feel this way and it will pass. Put your hand on your heart and feel your heart beating with your eyes closed if you can.
When you have done that, check in with yourself and ask yourself what you need. A glass of water? A hug? To go home? It’s so crucial that you honour yourself and your needs and when possible share with others how you’re feeling. Let go of trying to “be normal”… love yourself for who you are…normal is overrated anyway 😉 When you love yourself for all that you are and all that you are not, others will too.
Feel your feelings
This sounds easier said than done, I know, but with practice, you can do this in a social setting without having to take time out. It’s important that you first practice in a safe space until you become used to doing so.
On the daily, I’d recommend practising meditation and quiet time so that you build up the skill to connect inward and quiet your mind while watching your thoughts…. not becoming them or believing them without enquiry.
“The worse thing that can ever happen to you is that you’ll feel a feeling.”
You may think you’re going to explode but I promise you, you won’t. When you are in a state of overwhelm, you are in fight, flight or freeze. To calm your nervous system down so that you’re in rest and digest, you need to physically relax first.
You can’t mindset your way out of a trauma response.
Taking deep breaths helps as well as saying out loud “Relax. Everything is fine. Breathe”, can help too. Avoid saying “Don’t panic. Don’t worry. Don’t stress.” As the unconscious mind can’t process negatives and so all it hears is “panic, worry, stress.”
When you notice an intense feeling come up that you instantly want to push away, chose to pause instead and take a conscious breath. Instead of pushing the feeling away or numbing it, say yes to the feeling instead. Invite it in. Create space for it to be there. Notice how it feels in your physical body. If it had a colour what would it be? A shape? Moving or still? Is the feeling trying to tell you anything? Feel the pain. Deeply feel it and you will start to notice it soften.
Emotions are simply energy in motion. For an emotion to be felt, it becomes a feeling that we must feel and then we can let it go. Then the energy has passed through us. The problem is, we don’t get taught how to do this when we are younger or in school, we often get taught the exact opposite…
“Don’t be angry.”
“Don’t be upset.”
Suppress. Supresss. Suppress.
When you make this a daily practice, you will become less overwhelmed and consumed by your emotions and you’ll be able to retreat back to your safe space within.
“Something I used to have incredible panic attacks and shutdowns over -where I would go non-verbal and not be able to move for hours- was feeling full. It was partly anorexia based- but there was definitely a purely sensory trigger to it as well which I don’t think would be the same in non-autistic people. This made it extremely difficult to honour extreme hunger in early recovery.”
I’ve experienced extreme overwhelm when feeling full before to the point where I wanted to leave my body or even die because I couldn’t cope with the emotional pain from fullness. I’ve spoken about this before in a previous episode but it’s worth visiting again now. For me, it wasn’t the physical feeling of feeling full (although that wasn’t pleasant by all means) it was more so what fullness meant to me. And fullness meant absolute failure, disgust, rejection and devastation which was too much to bear.
I didn’t cope very well back then but I learnt how to be with the emotional pain and change my perception around what it meant over time. Distraction also helped a little… watching a movie that I could lose myself in so I was out of my own head and wearing loose clothing (basically only my dressing gown).
With regards to what this Queen is saying about her totally shutting down when she was full due to her autism and therefore it was extremely difficult to honour hunger in early recovery, here’s what I would suggest for anyone going through similar.
Have all of the foods that your extreme hunger wants in the house in abundance so that you can see that there is enough. When you are eating, stop just before you reach your trigger point (if you’re able to connect to that) and as soon as you are able to, eat again. It’s so important to honour your extreme hunger as much as possible and so any way that you can do this, the better.
It may take more time for your body to trust that there is enough food and to get all its needs met in order to get back to its set point weight compared to someone who can just go all in, but if fullness only traumatises you and stops you from actually moving forward then do anything that enables you to keep taking action steps – no matter how small – toward recovery and food freedom. That’s the goal. Eating unrestricted. Always.
There is also a lot of mindset work to do in recovery and on your journey to food freedom. Pro-recovery self-talk (that you actually believe) is a huge part of supporting yourself. An example of what I would say to myself when I was in a panic when I was full:
“These feelings are so painful right now. The last thing I want to do is to be with my feelings and this sensation of fullness… but I can do hard things. It’s ok. Even though it feels like it, I’m not going to die. This will pass. It’s the ED that is making this so painful right now. I am no longer available for it to control me anymore. It’s ok. I am safe. I am loved. I will get there. One step at a time.”
#3 Sever black or white – right or wrong
“Diet and exercise are something I can very clearly do ‘right” or wrong in other’s perception (diet culture assumed). I Used to be a chubby kid and that was clearly “wrong” and I could “fix it” (and I was praised for that) whilst the much bigger thing was unknown. But it’s a very obvious way to be socially acceptable.”
Black or white thinking is always a characteristic of those with eating disorders. I haven’t coached one client who didn’t have black-or-white thinking when they first came to me. I assume that those with autism experience this way of thinking on a deeper level.
When there is no black or white, right or wrong, you’re left with the space in between which is where natural balance happens. If you think of a pendulum swinging, it will never stop swinging if you continue to swing it…! If you leave it alone, it naturally stops.
Black or white thinking can show up in anorexia as “Well I missed breakfast so I may as restrict for the rest of the day now and start again tomorrow”
Black or white thinking can show up in binge eating or bulimia as “Well I’ve eaten one cookie so I may as well eat the whole pack plus a ton of chocolate, 5 tubs of B&J, 4 pizzas and a jar of peanut butter…!”
With support, if you learn that it is safe and actually extremely beneficial in so many ways to be in the grey area (colourful area), you will be able to let go of your black-or-white thinking. This takes gaining clarity on what you are seeing as right or wrong, lovingly challenging and changing the beliefs and patterns that are stopping you from letting black-or-white thinking go, and evidence that life is better when you act in the grey.
It’s no good just saying to someone “nobody really cares about what you look like, society is a big lie, just get over it!” Whilst that is true, there are many layers to peel back and blocks to work through until the person CAN genuinely believe that. That’s why coaching is so transformative. Hence, why I am a coach!
#4 Obsessive tendencies
“Focusing on numbers/kcals/routine == calming. I also use it to my advantage to be eating enough every day in good phases.”
Intense interests and repetitive behaviour can be a source of enjoyment for autistic people and a way of coping with everyday life. But they may be obsessions and limit people’s involvement in other activities and cause distress or anxiety.
Autistic people are able to concentrate very well on something they love. Their hobbies give them a great deal of meaning in life, and for some people, their favourite pastime may even seem like an obsession.
The answer to this, in my opinion, is to use your obsessive tendencies to support your recovery instead of going against it. Imagine if you could be as obsessive with recovery as you are with restricting… You can!
I used my obsessive “all in” mindset to recover. My mantra was literally, “whatever it fucking takes”… I would also “overachieve” at recovery for example when I was challenging my fear of Nutella (because I would binge on it), I’d purposefully eat more Nutella than I actually wanted to, just to prove to myself that I could and I was “overachieving” at the challenge. Over time, this balanced out as I healed the root of needing to “prove” something to myself and others. It was all ego based… needing to get something super right and be really good at it.
I would advise getting clear on your values and lining them up with recovery and food freedom. This is an exercise I do with my clients at the start of coaching to help propel them forward. For example, if one of your values is control, how can you pivot that so that it is supporting your recovery not hindering it?
“I must control my food in order to feel safe.”
“I take back control from the eating disorder as having an eating disorder is not safe. It is dangerous.”
Understand the function of the behaviour
Think about the function of the repetitive behaviour or obsession. What does the person get out of it? Does it reduce anxiety, or block out noise? Is the obsession more harmful than good? With an ED it would be.
Modify the environment
Does the person always seem to find a particular place like a classroom, hard to cope with? Is it too bright? You might find that modifying the environment (eg turning off strip lighting) can help to reduce sensory discomfort. If the behaviour is a way of getting sensory input, look for alternative ways of achieving the same sensation.
I spoke about this in #1 Routine Change.
Self-regulation skills are any activities that help a person to manage their own emotions and behaviour.
If you can help the person to identify when they are feeling stressed or anxious and help them learn alternative strategies to use, you may, in time, see less repetitive and obsessively habitual behaviour. Strategies to consider might be relaxation techniques such as taking 10 deep breaths or squeezing a stress ball, as well as finding ways to communicate their need for support either verbally or, if that is too difficult, by showing a red card or writing a note.
Many autistic people have difficulty with abstract concepts such as emotions, but there are ways to turn emotions into more ‘concrete’ concepts, eg stress scales.
You can use a traffic light system, visual thermometer, or a scale of 1-5 to present emotions as colours or numbers. For example, a green traffic light or a number 1 can mean ‘I am calm’; a red traffic light or a number 5, ‘I am angry’.
If you need to, set clear, consistent limits – for example, ration an object, the time a person should spend talking about a subject or the places where they can carry out a particular behaviour. Behavioural change is most likely to be successful and the person is less likely to be distressed if you start small and go slowly. Increase time restrictions and introduce other limits gradually.
Decide together a realistic target and put together a plan to reach that target over a period of time. It is important to set small, realistic goals to help build on success and increase confidence.
Think about whether the person would find it easier to engage in the interest for shorter periods throughout the day or for longer periods but less often.
Consider what needs to be changed. Are they unable to stop doing the activity? Work on reducing the time spent on it. Is the issue that they constantly start the activity throughout the day even when they are trying to focus on other things? Work on reducing the frequency. If it is a mixture of both, focus on one aspect to change at first, to increase the chance of success and reduce anxiety.
Continue in this way until you meet the goal, which is to find a balance between enjoying the interest and doing other activities.
Anything else that is not harmful (as the ED behaviours are very harmful) that provides the same or similar feeling or anxiety relief should be explored. This may be switching calorie counting for ticking off a chart for each mealtime. For example, the chart may have a box for protein, fats, carbs, fibre and pleasure (tastiness) for each meal. The name of the game would be to ensure you had each macronutrient AND tastiness at every meal. You could do something similar for snacks such as; tastiness and blood sugar balancing (eating fat or protein whenever you eat sugar/carb such as peanut butter with a few cookies.)
#5 Making choices
“The other thing I found very difficult (and still do!) is actually choosing what to eat. Even with extreme hunger/ mental hunger, I genuinely didn’t know what I wanted, and my brain literally would not allow me to eat the ‘wrong’ option so I would spend ages choosing food and would end up with physically, not enough time in the day to eat to full hunger. Again, not even coming from a place of fear of weight gain.”
For this, I would suggest using a choice-making or a coin app. Let’s say you have more than 2 choices for food, you can use the wheel decide. And with a choice between 2, you can simply flip a coin or use a coin-flipping app.
Alternatively, if you are with someone, you can ask them to make the decision for you.
Other tips for recovery without going all in
- Add your trigger foods into your daily diet little and often – eg Nutella in oats and on toast. A random handful of peanut M&M’s after breakfast.
- Having your usual evening snacks in the morning or at lunchtime such as ice cream.
- Eat fear foods with others or on a support call.
- Have your trigger or forbidden foods on show all the time so you are constantly surrounded by them and see them in abundance and it becomes normal for you to be around them. (Exposure therapy)
- Buy portioned-out things such as small chocolate bars or bags of crisps.
- Introduce one new fear food a week starting with your least anxious list (traffic light system) and gradually increase and move up to highly anxious foods.
- Journal about how you “survived” when you ate something scary, and reinforce it’s safe to eat these foods.