Autism and eating disorders: individualising treatment for your autistic child or teen

It's likely that any ‘standard’ treatment must be adapted, individualised.

There are biological imperatives for anyone with an eating disorder: regular nourishment, and weight recovery. How to achieve this and how to work on other aspects of recovery, may need to vary.

Some parents and clinicians believe that to be ‘evidence-based’, treatment must follow a set method. There is a valid concern that when a method is altered, one may inadvertently lose the very aspects that might make it successful. Personally, I think that an experienced, specialised therapist and a well-informed parent can wisely tailor a method to a child, autistic or neurotypical. We cannot use blunt instruments, one-size-fits-all tools to treat any eating disorder. Autism makes that even more crucial.

Learning about autism helps all of us to help all of our children with an eating disorder. That’s because an eating disorder often brings on temporary autistic traits.

I’ll give you pointers and examples further down. The quick answer is, 'It depends'.

For instance, some parents of an autistic child enthusiastically tell me that the tips in my book or my Bitesize audio collection or workshops ‘worked’ for them. Others tell me that while some things worked, other things did not. What other things? Again, this varies hugely from one child to another.

What's clear, from what parents and therapists of autistic people tell me, is that treatment for an autistic person must be individualised. We have to take into account each person’s needs, challenges and strengths. This isn’t too surprising, as with neurotypical patients, experienced therapists already tailor the details of treatment, even if they follow a treatment manual.

At present there are not enough therapists who have expertise in both eating disorders and autism. That's true for those treating individually, those using a family-based approach, and those working in institutions. As autism is common among eating-disorder patients, it’s a no-brainer that all treatment providers need the expertise.

“I had to educate ward staff on admissions each time about the impact my son’s autism was having on the eating disorder.”

Especially concerning is when a child is turned away from autism services because they have an eating disorder, and from eating disorder services because they are autistic. This has to change.

At present nobody can give a definitive guide to how treatment should carried out for autistic patients, as there is hardly any research. The main eating-disorder treatment manuals – for family-based treatment (FBT), for cognitive behaviour therapy (CBT) and for adolescent-focused therapy (AFT) – have not been designed with any particular attention to autistic patients.

But parents and clinicians are starting to share their experience. This page gives you a broad overview. It may be wrong for your child. Keep doing your research and use your knowledge of your child.

Plenty of parents report that their autistic child fully recovered from their eating disorder. This page aims to guide you to tailor what you do to your child’s needs, not to lower your expectations.

“She is now 19 and her weight is well back up to where it was before the severe restriction began. We had to really get on top of things, but a year and a half later, she’s once again getting food for herself. She recognises that she needs to be aware of what she needs to fuel herself. The anger has gone. The greatly extended meals have gone, although I recognise that she has ALWAYS been very slow with her eating since toddlerhood, and this is simply the way she is.”

Autism can be missed in youngsters who are good at ‘masking’ or ‘camouflaging’ – girls in particular may have worked out how to behave so as to fit in with their ‘neurotypical’ friends.

Quite a few youngsters with an eating disorder are autistic. Surveys are small, and mostly for females with anorexia. They tend to lump together those who are autistic or those who display a high level of autistic traits (and as we know, these traits may fade with renourishment). For females with anorexia, we’re talking around 30%.

I apologise for not talking about bulimia or binge-eating disorder in relation to autism. I don't know enough about it. I know it is distressing for parents to find so little on the topic. If you have expertise to contribute, please write in the comments below. Meanwhile, be aware that bulima and binge-eating disorder involve bouts of restriction. Those can maintain a cycle of restrict/compensate, so some of the anorexia tips will be useful to you.

‘Autism Spectrum Disorder (ASD)’ is the term used in the DSM diagnostic manual. While the term ‘Asperger Syndrome’ has been removed, some people prefer to keep it.

The diagnostic criteria, which you can read in full here, include ‘persistent deficits in social communication and social interaction’ and ’restricted, repetitive patterns of behaviour, interests, or activities’.

The term ‘spectrum’ is intended to reflect the variety of strengths and difficulties of different people, though not everyone likes to be described as ‘on the spectrum’. Some prefer the terms ‘neurodiverse’ and some refer to ‘Autism Spectrum Condition’ (ASC) because autism is their identity, not a disorder. And while we can talk of having an eating disorder (because it’s an illness), describing someone as 'having autism’ tends to be considered as daft as 'having homosexuality'. More on generally accepted language here, though what matters is the preferences of the person you’re talking to.

I warn you, what follows is also ‘normal’ while a child is starving and/or has an eating disorder. So you need to think back to whether your child was a bit like this before the eating disorder.

• Anxious, possibly with panic attacks and aggressive outbursts.
• Rigidity around food, around mealtimes, how things are done, needs routines.
• Black-and-white thinking: they don’t get nuance. Things are either good or bad.
• Resists your instructions, wants to decide for themselves.
• Needs to plan ahead and is stressed by any disruptions in the plan.
• Can’t tolerate uncertainty.
• Perfectionistic.
• Rituals – there may be Obsessive Compulsive Behaviour (OCD).
• Once they’ve decided they won’t eat, nothing will change that.
• Socially withdrawn, or has to put great effort to fit into a group.
• Cannot recognise, label or talk about how they feel (alexithymia)
• Hates being told what to do, needs to feel in charge.
• Anxious as they believe people judge them as they eat
• Needs to move, cannot sit still.
• May hit themselves, self-harm.

Again, remember that all of the above are also common with just plain anorexia nervosa or ARFID, so don’t jump to conclusions. Note also that autism is a ‘spectrum’ disorder, and it’s actually quite a few spectrums. So, some people are low on some aspects and high on other aspects. For instance, one child may only tolerate bland flavours, while another needs strong flavours, and yet another doesn’t have an issue with flavours.

In the next list you may find one or two characteristics that might prompt you to ask your clinical team about autism, because (to my knowledge) they are not common among individuals with an eating disorder who are neurotypical:

• Sensory issues: textures (food or clothing), sounds, lighting, visual ‘noise’
• Selective eating which doesn’t make sense in terms of calories (no problem with some high-calorie foods, meltdowns over some low-calorie foods)
• Doesn’t get metaphors, figurative speech
• Doesn’t get social etiquette, or ‘masks’ to fit in
• Social anxiety
• Has co-occurring attention deficit hyperactivity disorder (ADHD)
• Over-empathising (highly sensitive to tensions around people, intensely pained by others’ suffering)
• Neuro-motor differences: clumsy, trouble with coordination
• Resisting even small things you request: Pathological Demand Avoidance (PDA) affects some autistic people.
• Needs to be in control to feel OK (it's oversimplistic to say anorexia is 'all about a need for control': if your child is particularly attached to control it may be a strategy to reduce uncertainty and anxiety)
• ‘Stimming’ (short for ‘self-stimulatory behaviour’): (a repetitive, self-soothing action such as waving hands, flick fingers, rocking)
• Gender diverse

If you are thinking that quite a lot of the above matches your child, that these symptoms or behaviours happened rather suddenly (perhaps after an infection), and if your child’s behaviours or thoughts are pretty extreme and perhaps also combined with OCD, then check out my post 'Bizarre yet normal symptoms'.

My aim is to give you just enough information to question the professionals, and you can also learn more from sources I list at the end. If you think your child might be autistic, you can request an expert assessment. That can be quite detailed and lengthy, and costly if private, and where I am in the UK, there can be a long waiting list.

Be careful, as screening tools are very rough instruments and do mislead: you may miss autism in one person, and mistakenly find autism in another. What parents and/or eating disorder professionals can do is use a screening tool just as a first step, to start conversations that will support a more informed referral to a specialised autism team.

Assessment for autism is a lengthy process. And when your child is malnourished, it gets extra complicated. So at first, maybe all you want is for your child's needs, strengths and difficulties to inform the treatment. This is surely true whether or not there is autism.

Ideally an eating disorder treatment team will have expertise in neurodiversity. They can then work with issues around interoception, executive function, sensory issues, emotion processing, social communication, routines and so on. A short screening, followed or not by a referral for a full assessment, will help formulate needs.

Parents, depending on where you live, you may not have access to eating-disorder clinicians who understand autism. In this case, note that you are the expert on your child (and if you do your research, you will also soon become an expert on the eating disorder/autism combination). So be your child’s advocate and discuss with the clinicians how treatment needs to be individualised. Don’t delay, because with an eating disorder, early intervention is extremely worthwhile.

For some, it is clear that a full assessment and diagnosis was really useful:

“I really wish that as soon as any child is diagnosed with an eating disorder they are assessed for ASC. The stress of the first few months of this year and us following our team’s standard approach have caused huge anxiety problems and made the eating disorder much worse.”

"When an individual is diagnosed with an eating disorder, autism and ADHD screening should systematically be undertaken before any additional psychiatric diagnosis is considered. This will inform the need for neurodiversity-affirming care and reduce the high rates of misdiagnosis and diagnostic overshadowing which have detrimental consequences." (Cobbaert & Rose, 2023)

Eating disorder or not, I often hear that it is useful to have an official diagnosis of autism. Parents say that their child found some peace and got to understand themselves better.

"The ASD diagnosis was like a lightbulb for her, as if now she understood something she hadn’t before. It seemed to offer her permission to eat again."

"Being identified as neurodivergent has been shown to significantly increase self-awareness, self-compassion, and improve overall wellbeing, which has key implications for eating disorder recovery." (Cobbaert & Rose, 2023)

An autism diagnosis may mean schools provide extra support. It will also help the eating disorder team:

"The autism diagnosis gave the eating-disorder team confirmation that they'd done the right thing by moving away from their more standard feelings-based approach, which had not been helpful."

Parents, while you’re talking to a psychiatrist, remember also to enquire about any psychiatric drugs that may help if your child is highly anxious or depressed. If your child is taking medication for co-occurring ADHD, ask about any appetite suppression effect (more from me here). There are no drugs to cure anorexia or ARFID, but some help with co-occurring difficulties.

ARFID is an umbrella eating disorder diagnosis that covers different types of eating difficulties, as long as there is no fear of weight gain, no body image distortion. If you don’t understand how your child can have so many restrictions while being perfectly comfortable with some high-fat foods, they might have ARFID. More from me on ARFID here.

One of the ARFID categories corresponds to difficulties shared with some autistic people: a limited range of food due to sensory issues. So yes, some of those with ARFID may be autistic.

Autism is also associated with anorexia nervosa. Anorexia generally arises from a whole combination of factors — insufficient energy input being the main one. I hear that an autistic person with ARFID may shift to anorexia after repeated stays in an inpatient unit that treats anorexia. This may be because the person cannot help but mimic others. Or it may be a stress/trauma response from being away from home, in a group setting where the understanding of neurodiversity is poor. Inpatient units are, hopefully, making progress on this.

"some neurodivergent individuals report feeling as though masking has either contributed to the development of their eating disorder or that the eating disorder was a form of masking (e.g., losing weight as a means to increase social acceptance and prevent discrimination)" (Cobbaert & Rose, 2023)

An anorexia diagnosis kicks in when in addition to the food restriction, people are distressed about their weight and body shape, they care about calories, and they are focused on weight loss. Anorexia isn't the same for everyone, though. People — autistic or not — have a variety of beliefs that drive anxiety around calories or weight gain.

Note that if your child was diagnosed with ‘atypical anorexia nervosa’ it’s anorexia nervosa, without the (statistically defined) low weight. It's like saying that although your child’s feet are bleeding from shoes that are too small, the shoes are fine because they’re the average size for that age. I say more about atypical anorexia, and why it demands just as much care, here.

Here’s a principle for starters: The eating disorder can and should be treated. The autism is ‘a friend to be made’. Don’t let autism stop you from supporting your child's freedom from an eating disorder. You have to take care of your child’s health, they must get nutrition, they must return to a healthy weight, and then there's more work to do to free them up from fears and habits that came with the eating disorder and make their lives miserable. And then:

"Allowing neurodivergent people to be authentically themselves and celebrate their neurodivergent identity in a positive and strengths-based manner rather than focusing on deficits" (Cobbaert & Rose, 2023)

"The results highlight the need to distinguish between autism- and AN-related difficulties, accommodate autistic traits such as sensory sensitivities and communication differences, and ensure the autistic voice is present in both the development and delivery of care" (Work with us, Field et al., 2023)

Several parents have told me that their child’s autism was actually an advantage in terms of eating disorder treatment. And that’s because their child likes rules and routine.

"The eating-disorder rules were ingrained, but over time, with repetition, the '3 meals plus 3 snacks' rule — and the rule to eat what was there – took over. We talked about how these new rules gave her more control over 'the thing'."

Others have told me their child related well to rules around set times for meals and for limited exercise, and to the rule that parents serve the food.

"It was extremely hard to get our daughter to eat. She did not trust me to know what was needed. It worked once the hospital dietician gave us a mealplan. My daughter has not seen it (and I had to adapt it slightly) but she trusts the professionals. If it is a rule then she will follow it."

From another parent:

"The rules around the length of mealtimes (to ensure one didn’t slip into the next one) meant we kept on track and mealtimes were usually not too long."

You may have picked up from my ‘Bungee Jump’ video how logic tends not to work when our children are distressed at the dinner table. But maybe that’s not true for your autistic child, as this parent explains:

“A lot is written about how ASD makes an eating disorder harder to treat, and how the outcomes are poorer.  I think this is misleading. We found we could harness the power of the ASD brain to aid recovery. For instance, we helped our child evaluate the benefits of keeping the eating disorder, and of giving it up. We could point out how the focus and determination that came with ASD is a tool at their disposal. We could talk in logical ways that, perhaps, don’t work for the neurotypical brain.”

And from another parent:

“She needs facts about why things might happen or facts on food/fuel.”

And another:

"She was terrified of fried foods, cheese etc, so we did a lot of education about why brains and bodies need oil and other foods."

And this one is important:

“My daughter needed physiological facts. She wanted to eat and to get on with the job but she couldn’t make it work without the facts. When clinicians avoided her questions and just said, ‘It’s what you need’, and when they were trying to let her ‘sit in the feelings of discomfort’ or something, it drove her absolutely bonkers because she couldn’t progress without a system, and to do that she needed information.”

And to contradict all the above, here is an opposite experience:

"Rationalising the need for eating did not help. My son's thinking is narrow and precise. He would never accept he was irrational or wrong. It would dent his already fragile self-image/confidence to beyond repair."

Many parents have told me of the role — good and bad — that mimicking plays:

“I believe my daughter's anorexia started from mimicking a friend. Comparisons and competition are very relevant in ASC people. If my daughter sees another person's fear food, she thinks to herself, 'What's wrong with that food, maybe I should fear it too'. For this reason, social media can be very harmful, but also helpful in guiding their recovery if they can find body positive messages and steer clear of weight loss messaging.”

One mother gave me this hopeful account:

“Whereas parents of neurotypical children often describe recovery as ‘two steps forward, one step back’, I am struck by how different our experience has been.  It is like it took forever to gain any traction WHATSOEVER, but once our daughter decided to recover and we’d got a system she felt in charge of, she has not looked back.  No body images issues (which were definitely present!) related to weight gain, no falling off the wagon, no replacement behaviours to manage anxiety. Progress has been very, very linear.”

Your first priority is probably the same as for any child with anorexia or ARFID: nutritional rehabilitation.

Learn the skills to get them to eat reasonably balanced meals regularly (avoid gaps of more than 3 or 4 hours) and to recover a weight conducive to physical and mental health. (I explain weight recovery goals on this page, and on this YouTube.)

Why? For medical reasons, of course: many systems shut down when the body attempts to survive in spite of starvation. And for mental improvements. While humans are malnourished and/or underweight, their brain functions poorly, mood is low, anxiety is high, and so it’s hard to make progress with anything. As nourishment goes up you may even decide that your child is not autistic after all.

These general principles apply to all humans, but how should we apply them?

The rule of thumb with a neurotypical youngster is that we prioritise nutritional rehabilitation even if it means putting a lot of normal, joyful life on hold. Life if horrible, our children are in agony, so the sooner they are renourished, the sooner they will feel better. Renourishment is tough for our children but it brings rapid improvements, so let’s get it over and done with swiftly.

With an autistic child, some (but not all) parents have told me they need to make happiness somewhat of a priority as well: while life is not too bad, their youngster manages to eat more easily. This may mean that weight gain is slower, but at least the youngster is making progress rather than putting up impossible resistance.

Some parents have found they can renourish better when they take the focus off the eating disorder (when you read these quotes, please remember that every child is different):

"Our girl has pathological demand avoidance (PDA) and ADHD as well as being autistic. She was obsessed by numbers and would rather not be alive than go over x kilos. Our clinicians advised us to focus on her special interests, so we devised meals and activities around those, helping get absorbed in these interests. We had to be creative. We distracted her a lot during and after meals, stopped her purging, got her to take her meds and get enough sleep. We used a mixture of a wise family therapists advice and our own trial and error."

Read Keira's story here: How eating disorder inpatient unit Ellern Mede in Rotherham, UK, adapted the usual treatment to take into account Keira's PDA

From another parent:

“For us autism help and advice is what helped. Pretty much all our eating-disorder-directed treatment made things worse!! I learned not to assume that she was engaging in eating-disordered behaviours. When I’d watched over her because I expected her to throw food away, that’s what she did. When I expected her to eat everything and not behave like someone with anorexia then she ate everything.”

Here’s another example:

“Giving our daughter perceived control of her food, under our watchful eyes, and gentle encouragement to break her food rules one by one. Connection with the person is crucial and has returned harmony to our family dynamic, and slow but steady weight gains.”

A small change can make a big difference:

"The greatest impact on his recovery was after we managed to spread the food over the day more evenly."

The mother of a 9-year-old told me that they’ve been making progress now that ‘challenging the eating disorder is now under my daughter’s control’. But don’t be fooled. It doesn’t mean the parents are stepping back and doing nothing. They are nudging, guiding, making suggestions and giving the illusion of choice (‘For snack, would you prefer a chocolate or a coconut muffin?’)

Of the parents I know who succeeded with a rather collaborative approach, none allowed their child to eat as little as they liked, none stood back hoping their child would gain motivation to do it all for themselves, none ignored the biological imperatives. Autism does not mean we can have a laissez-faire attitude to the eating disorder.

Almost everyone with an eating disorder has a growing list of foods (‘fear foods’) that make their anxiety spike. They feel much safer and calmer avoiding them, and when you insist they eat these, may fight with all their might.

In the early days of nutritional rehabilitation, it can make sense (for both neurotypical and atypical children) to stay with a limited range that keeps anxiety manageable, as long as you’ve managed to introduce enough foods for nutritional balance and weight gain.

“I fed my ASC daughter using LOTS of the food she currently would accept. Luckily, she didn't have the same fear of fats as my other daughter (eating disorder but no autism) had, so I was able to add these in without her pushing back.”

Later, when body and brain are doing better, you can help your child to expand their range. See further down my section on exposure methods.

When there is no autism, we aim to get our children back to all foods that are ‘normal’ in our circles. This frees them of fears, of the tension of restriction, and allows them to blend with friends and enjoy social interactions.

With autism you may need to keep assessing what is possible, what is respectful, and what method works best.

There will be some foods that your child was never comfortable with. Can you recall if, before the eating disorder, your child was already quite a ‘picky’ eater? Maybe they had issues with:

• the texture
• the blandness
• the strong taste
• the colour
• the temperature
• the fact foods are touching
• or that they’re the wrong brand?

If rigidity around food is part of your child's autism, then my understanding is that you would look into addressing this more slowly and patiently and gradually than if it was purely due to an eating disorder. You would aim to eventually bring your child back to all the foods (and meal situations, such as eating out) that they used to be fine with. And then you would assess whether it is wise and feasible to expand their flexibility beyond that. You might favour some of the treatment approaches for ARFID.

“My autistic son, now recovered, had ‘food jag’: he could only tolerate crunchy foods, fewer and fewer, until he could only cope with celery and carrots. After a hospitalisation we had to introduce one new food at a time, pushing his boundaries as far as they would go. At first, he found some textures intolerable. Thankfully once that passed, he fell in love with mash potatoes and I could load them with cheese, butter and milk. What saved him was combining the supplements Calogen and Sustagen (I couldn’t get hold of Benecalorie).”

With neurotypicals, the work of flexibility tends to be done with exposure and desensitisation. The idea is that as you do the fearful thing, over and over again, the brain rewires as it categorises this thing as normal and easy. As I describe in detail in Chapter 9 of my book (also on page 3 of my free helpsheets) you will be assessing whether it’s more effective to use ‘flooding’ (ripping the band-aid) or a gradual exposure (a ladder or ‘food-chaining’ approach, where you build up the challenge in small steps). I mostly hear from the parents of autistic youngsters that exposure needs to be gradual:

“Food ‘chaining' really helped: such as gradually moving from fish bites or fish fingers to battered fillets of fish, or from poached or fried eggs to the dreaded scrambled eggs!”

* Read ‘Sensory eating is not picky eating’ for a great personal account of increasing food variety *

It’s a no-brainer that any child must recover a weight conducive to their physical and mental health. Some parents tell me they had to accept that weight gain would have to be slower than the usual recommendation of 0.5 to 1 kg a week minimum. For others, autism did not hinder a good rate of weight gain.

In general, we expect any person – neurodivergent or neurotypical – to start being more ‘themselves’ as they get nourished and move towards weight restoration. Things get easier and happier, as this mother of an autistic young person explains:

“Increased weight made a HUGE difference – and some brain repair, I guess! Her rigidity lessened and she once again began to accept a much wider range of foods, including old favourites she had rejected.”

I also hear the opposite – that weight gain has not brought mental improvements, or even amplified mental distress. These parents are between a rock and a hard place, because weight recovery is essential for physical health. If that’s you, I’ll make some suggestions in case they help.

Learn lots about ‘Phase 2’ (see Chapter 10 of my book) because although weight recovery is necessary, it is hardly ever sufficient. You have to coach your child towards more freedom. Keep learning about communication (in general and with autism) and expand your repertoire of calming skills (see for instance the resources I list here).

“We used a lot of self-soothing techniques like distraction boxes, weighted blankets, tight holds and cuddles (when she would let us) or when she was in meltdown to help her regulate breathing etc. Low lighting, calming music etc. We also tried to impart some of the distress tolerance skills we learned from doing a DBT (Dialectic Behaviour Therapy) course for her.”

(Do check, by the way that you only use the good bits of DBT. Cobbaert and Rose 2023 warn that DBT may address self-harm with punitive '24h no contact rules’" and 'withdrawal of warmth')

Also, check your memory to gain perspective. Quite often parents of an autistic child tell me that things are no better with weight gain, until I check my notes and remind them of all the struggles that have now disappeared.

For example, a young person who couldn’t eat in public, who is now doing so. Another who could only eat a few foods and now has a great range. Another who used to hide away due to crippling body dysmorphia: two months later, she loves her looks and is enjoying a social life.

Adapt the usual eating disorder treatment to take into account the things that are particularly difficult for your child. Here are some examples.

You might allow your child to eat with you in a quiet room, away from the noise of the rest of the family (including those crazy-making chewing noises?)

You might allow breaks from the table, some movement, and you might resume the meal or bring in some more food at unconventional times.

Indeed, if your child generally needs a lot of movement, you and the clinical team might allow more physical activity than is usual in the treatment of anorexia, when there's also an exercise compulsion.

A residential centre might reduce the visual or auditory ‘noise’ that adds to an autistic person’s anguish.

"reasonable adjustments should be made to accommodate neurodivergent people’s sensory needs. For example, environmental accommodations may include eating alone, dimmed lights, use of noise reduction equipment (e.g., noise cancelling headphones, earplugs), using visual distractions (e.g., watching series or
documentaries on a tablet or phone)." (Cobbaert & Rose, 2023)

Psychotherapy, such as CBT, may send an autistic person into meltdown rather than be… therapeutic, so do discuss with professionals what alterations are going to help. You'll already know if asking your child “How do you feel?” (a common exploration in any therapy) makes no sense at all to them.

Assess carefully how group therapy and multifamily therapy may or may not be helpful:

“In multifamily therapy she was terrified of the other girls with an eating disorder as she didn’t want to mimic them. But mimicry is not controllable. She started a whole host of eating-disordered behaviours after this. She begged us not to take her back but we were told this was ‘the eating disorder fighting against treatment’!! It was actually the opposite. Our poor daughter was fighting for her life. Now I know better but our girl has been through hell and back because we didn’t know.”

It may also be helpful to reduce the number of clinicians your child has to interact with.

If your child needs to be fed by nasogastric tube, see recommended practices in my post on 'NG tube feeding – parents' questions'. There are recommendations to reduce the need for NG feeding, and to make it more gentle if it is needed.

"Research has shown that accommodating patients’ sensory needs in mental health units decreases the number of restraint episodes" (Cobbaert & Rose, 2023, with more help on pages 87-89)

With autism, children have many anxieties and some exert a lot of control to reduce uncertainties. So should you tackle all their eating-disorder behaviours at once, or only address a few essentials at any time?

With my own (neurotypical) daughter there was a time when she could hardly eat anything, had a compulsion to stand all the time, and could only go to sleep with the covers off (so she could be cold). When we tried to address all these issues at once, the stress in the house was through the roof and we failed on all counts. With the therapist’s blessing, we concentrated on weight gain, and I sneaked in at midnight to cover my daughter. As she got renourished, other behaviours were easy to tackle.

Contrast this with the ‘Whack-a-mole’ view: parents (of neurotypical children, usually) who report that they only made progress by stamping out all eating-disorder behaviours at once – the idea being that allowing any disordered behaviour gives the illness oxygen.

If your child is autistic you will need to work out what best suits your situation. Here’s an example:

“Many parents I’ve come across have suggested that ALL behaviours that showed up with an eating disorder should be disallowed and stamped out. However, we found that allowing choice as much as possible was absolutely key to helping her to feel in control, thus massively reducing her anxiety. I think this is very much an autism thing and possible also a Pathological Demand Avoidance (PDA) thing."

If you think your child is autistic, it may be useful to explore whether any fear of weight gain is more to do with a focus on numbers than a dislike of their body.

You might try and find out what the issue is with a food they reject. With anorexia, we tend to assume it is because it is a high-calorie food or because, for instance, it breaks a no-carbs rule. With autism you might discover there’s another reason (like temperature) and you can solve the issue without letting go of your priorities (regular nutrition, weight-recovery).

In eating-disorder treatment we can be told to ‘externalise the eating disorder’. We may think we have to talk to our children in terms of their ‘voice’, the ‘bully’ that tells them to restrict. We may think it’s OK to shout, “That’s ED talking! I hate ED! I will not give in to ED! Eat!!!” I don’t see how that can make it any easier to eat, besides which many youngsters reject the ‘ED-bully’ metaphor. I say more about that here.

“My daughter greatly rejects the ‘separate Ed’ idea and says these thoughts are actually her, so we dropped that messaging early on.”

So, ask, check, and let go of this stuff if it’s not helpful to your own child.

You are the expert on your child (that's a big principle of family-based treatment). Combine that with great education about eating disorders, and – I really hope – a great treatment team, and you can steer your child’s treatment according to their strengths and difficulties.

Beware – and I mean it, really be cautious – of any message that there is just ONE way to ‘beat’ an eating disorder. I see a lot of this on parent forums. Clinicians specialised in eating disorders will problem-solve with you, not give you one-size-fits-all mantras.

It is ironic that an eating disorder makes our children into rigid black-and-white thinkers, and then we get exposed to rigid black-and-white dogma about the ‘only’ way that works to ‘beat’ the eating disorder.

“For her, toothpaste is ‘extra’. For months she did not use toothpaste. Then I said, ‘If I reduce your juice by the same amount, will you use toothpaste?’ And that worked.”

Here's an example of how you can problem-solve to suit your child.

You may be under the impression that you cannot ‘beat’ an eating disorder unless your child eats every single bite at every meal. Here’s a parent’s experience with their autistic child:

In another example parents found it did not work to use the ‘Magic Plate’ principle of calling their child to the table with the food already plated up. So they invited their child to choose a plate and hold it while they served food on it. It wasn’t all smooth. Sometimes food ended on the floor as their daughter pulled the plate away. But overall this system seemed to satisfy her sense of control. Another successful approach was for these parents to plate for the whole family, and their daughter chose which plate to take. 

Another example: dietitian Paola Falcoski tells me that in her experience, tolerating calorie-counting can be helpful to some autistic youngsters (this is something one would work to eradicate very early on with a neurotypical child): "It is important to be agreed as an MDT (multidisciplinary team meeting) and reviewed regularly."

Another example: a parent told me how they got around their child's compulsion to walk all the time:

"A thing that helped when she was weight-restored was getting a personal trainer, who was very aware of eating disorders, to do weights with her (no cardio), outwith a gym environment. Our daughter wanted a strong body and ample bottom. If she hadn't eaten enough she was too weak to lift the weights, so she realised how important it is to eat enough."

Note how cautiously this was managed. Nobody wants to see a walking compulsion (I write about exercise compulsion here) to shift to a gym compulsion. And when your child is vulnerable to an eating or exercise disorder, personal trainers must be selected with extreme care.

Another example: you may have heard that your child must eat at the table with the family, stay seated, and not leave till they’ve eaten every last crumb. But what if your child needs a more peaceful environment, eating with just with one supportive parent? And what does 'support' mean for your child?

"My daughter can not tolerate me coaching her at mealtimes, she puts her fingers in her ears and shouts at me to stop. We watch Netflix at mealtimes and she sits with her weighted blanket and uses fidget toys. I massage her feet with essential oils afterwards, to distract. She is very creative and likes to crochet, paint, make macramé. She needs to be kept busy so as not to ruminate on her weight and eating."

Some parents say it's important for their child to be able to wiggle or walk part-way through a meal.

And what if leaving a few crumbs makes it possible for them to eat (almost) everything?

Maybe that’s not a problem! As long as the left-overs don’t grow every day, you’re achieving regular nutrition, and you’re moving towards weight-recovery. Later, you can see to what extent your particular child can be coached towards more ordinary behaviours.

Another tricky one: does your team usually do 'open' (or 'sighted') weighing, where at the start of each visit they show the young person their weight? Is that helpful or not? If your child fixates on keeping the number as it is, you might make more progress weighing blind. Or even not weighing at all, if the data isn’t particularly useful right now, and if each weighing causes a period of reduced eating.

Surely every child needs treatment to be tailored to their own capabilities and needs. It is even more so with a child on the autistic spectrum. Let's remember that all our children have their good and bad days. When they're extra-stressed, we are their wise guides: yes, they need a steady hand, yes they need the food. And yet, how can we make things more do-able for them right now?

What is really hard for your child? What gets in the way of eating regular meals and achieving weight-recovery? Maybe they need to eat in a quiet room. Maybe they’re not ready to go to school. Maybe they need a different school. Maybe they need you by their side all the time. Maybe they can’t bear raspberry yoghurt. Maybe they need to plan meals ahead of time with you. Maybe they have to leave a little bit on the plate. Maybe they have 'off' days:

"If she's struggling we go back to basics: eat, drink, sleep, meds, special interests. Other demands get removed totally so she feels less anxious and more in control of life again."

Another parent told me how they keep cool about hiccups:

“One thing which I have always been very aware of: she has phases where she is very focussed on a specific food. Then if she suddenly rejects it, it’s best I do not make it an issue of it, as after a while she does suddenly accept the food again. So, we just go with it!”

Assess, see the bigger picture, and make the treatment work for them. 

I hear from parents at various points along a continuum, all of whom have supported their child to recovery, or close. Imagine a continuum, from left to right:

• At the extreme left, the young person can make all their decisions and use eating disorder behaviours unchallenged. This is the one point on the continuum where I've never heard of any progress. Usually things get worse.
  
• Still on the left, but this can work: collaboration, flexibility and joint problem-solving with the young person.
  
• Move along the right, and you find parents are making essential decisions around any priorities which their child can't competently manage themselves.
  
• Further along the line, parents may be making all the decisions for their child and may be using 'leverage'. Leverage may be of a 'When you …. then we can go ahead and…' nature.
  
• Further along still, parents may be attacking all behaviours of 'ED' simultaneously with a 'zero-tolerance' approach, and the leverage is equivalent to sanctions ('If you don't…. then I'm taking away your privilege to…). Although parents on some online forums recommend this approach to each other, I doubt that a certified FBT therapist would be guiding families this way, so be cautious.

Seek advice from a range of sources if you don't have a competent clinician. Experiment to see what works, review.

"First time round, we made all the food decisions — following FBT to the letter — all the way to weight-restoration (and more), but it didn't feel like she was really recovering, and she relapsed.

The second time round we followed our instinct to allow her more involvement in meals. We became a team, whereas before I was her hard-talking — and frankly not very understanding — coach.

As I could see her warming to this gentler approach, we both sort of relaxed into it (though my vigilance never slipped).

Under my watchful eye, she made sensible choices that catered to her food preferences. She has always been picky, and forcing fear foods on her never worked.

I definitely did not become a soft touch, letting her do as she pleased. Rather, we collaborated and I made sure she was eating sufficient amounts and making sensible choices and questioning her if I ever had doubts.

This way, with pressure taken off everyone, she has just blossomed.
It’s a slower process than first time round, but it is more linear and  I genuinely think we are getting there. There is such a thing as a safe middle ground here, I believe.

I've tried to see things from her perspective more, tried harder to understand, and to be less judgmental (and let's face it, less angry). This really helped me so much. It made the process so much easier as so much conflict was removed. She has said this helped her feel listened to and supported in a way the hardline FBT really didn't. She genuinely wanted to get better by this stage (and I get that not all of our kids do, which might make my approach risky for some) and she wanted me to help her to do it herself. Having some sense of ownership of the process seemed to galvanize her to keep going and make headway.

Our daughter– who at first couldn't even sit down — now has re-discovered her love of reading, which she does – wait for it – lying on her bed! She eats freely, and finally enjoys going out for meals with friends. She wants to draw a line under the past two years of hell.

Life is so much more relaxed. Thank you for giving me the courage to tweak FBT and find what works for my daughter."

Their daughter is now at university, still with challenges from the autism but with the eating disorder “in check and controlled”:

“We took her home after 2 years of inpatient treatment, with NG (nasogastric feeding) under restraint for 8 months. She was getting worse under their care: self-harm, suicide attempts. Once home we set a firm rule, she had to eat everything that was on the plate. We sat out the meals until she did. We set clear expectations and leverage/consequences. We went straight back to the foods she would ‘normally’ eat before the eating-disorder, including meat, fish and dairy (the ward had allowed her to eat vegetarian/vegan).

The longest stand-off we had at the table was 18 hours. During that time, we regularly replaced the food, adding calories incrementally, with her knowledge. She was supported, coached, distracted, however we were firm and consistent. We had a huge backlash. I was kicked in the stomach by her at 7 months pregnant and nearly lost the baby… she was in total meltdown. It was pure eating disorder, not ASC. She ate it all eventually, and then thanked us, recognising her eating-disorder voice was very loud and needed us to help her.

We never had another stand off like that again. But we regularly had plates thrown. Screaming. Head banging. Self-harm. Self-loathing. Loss of control. Wishes to be dead. Panic attacks.

Behaviours were worse, then better, then worse again, at various points as her weight increased, and when she reached 110% weight-for-height they pretty much stopped overnight. We gradually gave control back to her as she would have had pre-eating-disorder, continuing the support as needed for her ASC.

She has a PDA (Pathological Demand Avoidance) profile, so it was VERY difficult. However, she can reflect back now and recognise she absolutely wasn't in control and her eating disorder was calling all the shots and trying to manipulate every avenue. If we gave an inch, she took a mile, which made it much harder for her. She says unless we pushed her to eat, making it non-negotiable, she wouldn't have eaten and it would have made subsequent meals harder, because she would have known there were no limits and she could push.

She recollects that she felt intense hatred towards us at the time it was all happening, and she didn't understand why we were so firm and controlled, when seeing her distressed… but reflects back she knows now that was exactly what was needed, because she couldn't have managed if we had been emotional or had backed down because of her struggle.”

Some parents have told me that meals work a lot better when they have planned them with their child (autistic or neurotypical) child. Once the youngster has agreed to the contents of a future meal, they eat it without a problem.

In this case, parents need the skills to be kind, persuasive and persistent at each planning session. It’s not OK to keep agreeing to insufficient food – if that’s what’s happening you need more professional help. If you’re going to try this route (and it’s OK to do experiments and then review) I suggest you plan only a few hours or a day at a time. I’ve talked to parents who plan meals with their child once a week, and if the plan isn’t ambitious enough, they can’t do anything about it for another seven days.

Parents have told me they’ve developed the art of phrasing ‘suggestions’. Their child has the satisfaction of owning the idea (if you have a boss, you already know how to do this, right?!).

Here’s a non-food example. A mother learned not to say things like, “Would you pass me my book, please?” because her child reacted with fury (presumably due to a need for autonomy or respect or agency…. who knows?) All the mother had to do was say, “Goodness, I wonder where my book is?” and the girl would pass it over with great joy.

You may have heard that anorexia is about a need for control. This is a myth, and it can derail treatment). My understanding is different: when you are anxious, you cannot tolerate uncertainties, and so it makes sense to control things so that nothing unexpected and bad can happen and make you feel worse. At other times, it's quite nice to let others organise stuff…

Humans also have a need to feel in charge of their lives, to enjoy autonomy and be in choice. It's a particularly live issue for adolescents. It’s really hard that when they can’t eat for their health, we adults have to step in.

It's extra hard for some (but not all) autistic youngsters, who seem to consistently do worse when they feel they cannot be charge.

"With the diagnosis came a lot more understanding of why she kept saying no to food and we changed our approach. She is now involved in what she eats and is doing well."

One mother told me how it was working in her family. The child wanted a puppy. The parents wanted one too but said it would be too much work on top of an eating disorder. They did not present it as a bribe, but they made it clear the puppy would come after recovery. Then the girl, perhaps because of the autism, needed clarity on what would define ‘recovery’. What would have to happen for her to be considered recovered, and therefore for a puppy to come into their lives? This led to the creation of a long list of behaviours that would all need to be back to normal (the girl’s old ‘normal’).

The list featured every single fear food and every situation that the girl currently avoided (or did to excess). It’s the kind of list I would recommend parents draw up privately as they plan how to lead their child through fear extinction and ‘Phase 2’ work, but in this case, the girl was a keen partner. They agreed she would need to repeat and manage each behaviour/challenge) at least ten times. This is very wise, as repetition is required to ‘rewire’ the brain and make fears disappear.

The girl loved the system: it was all laid out clearly on an Excel sheet, it was quantifiable, and she was in control: every day she freely chose which of the many challenges she tackled and recorded, and she had the satisfaction of seeing the numbers go up.

The mother told me:

“At last, our daughter started making steady progress. Now her flexibility and variety is nearly back to normal, her weight and her mood are back up, she is engaging in normal life (eating at parties, swimming with friends), and feeling very happy in herself.  It’s almost as though the eating disorder never happened.”

“The usual advice to keep your child out of the kitchen during cooking (while someone else distracts/entertains them) was absolutely not successful. It made her super-suspicious. Anxiety skyrocketed and she often then absolutely refused to come to the table. What was far more successful was letting her help to chop vegetables or stir something whilst I cooked and chatted to her about something low anxiety.”

I find the above fascinating because so many parents of neurotypical children have told me they only started making progress when they kept their child out of the kitchen.

When we’re desperate our minds easily turn to punishments. “If you don’t do X then we’ll take away Y”. So, think ahead about your position. Even more so if your child is on the autistic spectrum.

"I went against the advice other parents gave, and allowed my daughter to become engaged with life again, whether she ate or not. I took her shopping, invited friends over etc. When she was too unwell I would take her for drives, to remind her of the community she belongs to and the world that was waiting for her."

There is no research to indicate whether punishments in eating disorder treatment are helpful or harmful. Punishments are not a requirement of any family-based manual, FBT or Maudsley. ‘Unconditional acceptance’ is.

When you join the world of eating disorders it won’t take long before you hear from parents, ‘If your child doesn’t eat every last bite, you must take away their mobile phone, cancel their friends, withdraw pocket money. Be a 100% brick wall. The motto is, life stops until you eat (LSUYE).’ The idea is that intrinsic motivation is inexistent with anorexia, so we have to provide some external incentives.

Be super-careful. Have a think if your child is likely to respond to this stance. It’s a blunt instrument. If you make threats you have to carry them out, and then what? And how long before you bring in aspects of 'a life worth living'?

Clearly, some parents have found great relief in finding that ‘consequences’ worked, and that’s why they are on forums urging other parents to do it. Yet I also talk to many parents who feel like failures, and stay very quiet in a state of anguish and confusion, because this punitive, black-and-white approach made things worse.

How might punitive parenting make things worse? I think it magnifies your child’s state of opposition and distress. More fight-flight-freeze, less connection, less trust. Connection is such a precious tool to help your child out of a disorder, yet you’re positioning yourself as the enemy. Parents say they’re only the enemy ‘of the eating disorder’, not of their child, but is that how the child lives it?

Here's the risk when using 'consequences'. When you take away the things that give your child some distraction, relief or pleasure, at a time they are suffering so deeply, it’s your child who is feeling the hurt, and they go deeper into fight, flight or freeze. With ‘fight’, you are now their enemy, rather than a trusted loving parent, a wise guide, coach and problem-solver. With ‘flight’ or ‘freeze’: they feel helpless, hopeless. They don’t care about you taking away their stuff because, they say, they want to die anyway. (I write a lot more about carrot-and-stick, the pros and cons and all the things you must think about carefully, in Chapter 14 of my book).

Again, ‘leverage’ works for some. But not for everyone, so you need other tools.

Even more so with autism. If your child’s autistic characteristics include an aversion to being told what to do, then rigid, heavy-handed use of punishments may well backfire.

"With pathological demand avoidance (PDA), sanctions don't work, so we would never have removed her phone for example. We focused on her interests, combining these with meals, and we used distraction. We put a couple of reward trips in the diary – she chose them – and she aimed for them and had goals. Her walking/pacing was a HUGE problem so we often took her on a long car ride to a place she was interested in to keep her still ( she didn't realise that). Telling her to stop pacing was a direct demand and would not have worked."

Does your child respond to black-and-white rules? Perhaps all they need is the clarity of the rules, not the ‘punishment’ bit.

Incentives can inadvertently become punishments when a child doesn't manage a challenge, but they work for some:

"If she completes her meal plan she is able to meet friends the following day. I had to reverse LSYE (Lifes Stops Until You Eat) and make it 'Life STARTS when you eat', this works much better. I tried removing her phone but that made her dig her heels in deeper."

In this example, a therapist empowered the parents to make the rules clear:

"With our 17-year old, a therapist visited each week and we planned what she would be allowed to do if she ate according to her meal plan, and what she had to eat after each 'activity' that used energy, to boost her up. She was told that I had absolute authority over whether she could go to school or not and I told school what she could and couldn’t do.  If it was spelled out on basic terms her brain came round to understanding it more than 'just eat more'."

Be very careful not to take away from your child, for the sake of ‘leverage’, the very things that help them survive their state of unbearable anxiety. If watching the same Netflix program helps distract and soothe them, they’re more likely to manage the next meal. So, this is not the time to turn off the internet.

"Her phone helped distract her from intrusive thoughts and guilt (we were lucky in that she used it for games and keeping in touch with lovely supportive friends, then later on recovery accounts)."

Child behaviourists have hijacked the word ‘consequences’. Here's a real consequence: if my child has not managed lunch, I assess they’re not fit to return to school. Or I get them to the doctor for a check. All this is fine and wise. But if I take away their entertainment, that’s a punishment.

You will need to find out what really helps your child. And then you will need to guide their clinicians:

“My daughter is currently working on a communication passport so that clinicians know what helps her. For instance, that she wants no more than a couple of questions at a time, may need those written down and would like time to answer; that she’s listening even if she loses eye contact; that she would like to be informed of new or altered plans; what helps her when she’s worried or
down. ”

(There is more on communication passports on PEACE Pathway)

Clearly, your child’s communication needs will inform how psychotherapy is going to work. Your child may not relate to 'How do you feel?' questions.

"Trying to give as much certainty as possible – concrete instructions rather then answering a question with a question ('I’m quite hungry, shall I eat?': don’t say 'how do you feel?' Just say 'Yes, have it'). Wishy washy replies caused huge anxiety. Being decisive helped everyone."

When I’ve checked this with parents of an autistic child, their replies included some of the following:

• It doesn’t work when we parents take charge of all the food
• It doesn’t work when I insist on every last bite being eaten
• It doesn’t work when I punish my child for not managing a meal
• It doesn’t work when I keep my child at the table for hours
• It doesn’t work when I follow other parents’ mantra ‘Life Stops Until You Eat (LSUYE)’
• It doesn’t work when I imagine myself as a brick wall or wearing a ‘full metal apron’
• It doesn’t work when I get mad at ‘the eating disorder’
• It doesn’t work when weight gain is my sole focus

OK guys, none of this is FBT anyway. None of this is evidence-based. The above are tips that parents give each other because it happened to work for them.

FBT for anorexia is a specific treatment written up in a manual. There are some variants of FBT for young adults, for bulimia, for parents-only, which have been published too. None of these were designed with autistic patients in mind, so indeed, it is likely that an FBT therapist will have to make adapt the approach for your child, while still follow the big principles.

The FBT manual gives the structure of the treatment, but it does not dictate how to feed. It does not go into the level of detail listed in the above parents’ comments. It definitely does NOT tell you to use punishments, to be a brick wall, or to keep your child at the table till every last bite is eaten. Therapists model respect and non-judgement of the young person.

Another thing: people use the term ‘FBT’ rather loosely, to mean anything where parents are involved. Or to mean anything they read on a parents’ Facebook forum. So, it gets confusing. Many therapists world-wide use a family-based approach of some kind. In the UK it’s enshrined in a standard as ‘Anorexia-Focused Family Therapy (FT-AN). I explain a lot more about FBT, Maudsley, FT-AN and so on here.

As for ARFID, there is no standard method to treat it anyway. It’s up to each therapist to use their expertise, using a range of tools. You can work out, with your clinical team, what seems most effective for your child.

You will need to work out for yourselves, hopefully with the support of competent therapists, where your child makes the most progress: at one end, you are totally in charge, and at the other end, you allow your child to shape the pace and method of their progress.

From Lynn Garvey, who manages the education program for Eating Disorders Families Australia (EDFA):

“From my experience as a parent supporting a child with autism and from feedback from other carers in our organisation, often the support methods proposed by some parents/carers/clinicians could quite unintentionally result in a trauma/PTSD response, therefore prolonging the life of the eating disorder. We are the experts in our own children and because of our neurological-connective bond, we have what it takes to stay a strong, compassionate, loving steady course to support our loved ones on their journey to a full and meaningful life.”

There is no scientific basis to doggedly following one single method if it isn't working. Parents and clinicians need to work out together what may work better.

Even with neurotypicals, FBT (using protocols from the FBT manual) doesn't work for everyone — far from it (I explain the statistics here). When we deviate from the manuals to tailor a family-based approach to an individual, there are no statistics to tell us which bits can safely be changed, and which bits must absolutely remain.

There is no science to justify that any method is the only method. There is still very little evidence for the treatment of anorexia, and even less for the other eating disorders. The best studies involve a few hundred patients, not thousands. These patients might have been mostly neurotypical or not — we don't know. We are still in a phase of exploration, even more so with autism added in.

In addition, a method may be excellent, but poorly applied. When I see parents telling each other that 'FBT doesn't work for my child' I'm interested in what they're actually doing. There's terrible advice out there, delivered by people who are not expert FBT clinicians. For example, there is no reason at all for parents to be punitive or dogmatic, or to withdraw love and kindness.

In the UK, the NICE guidelines, after reviewing the evidence, recommended two alternatives to FBT: they are CBT and AFT. There is no mention of autism in these guidelines or in any I know of from professional associations in any country. I don't think that autism was on many experts' radar until recently.

Note that FBT is mostly behavioural — there's not masses of attention to a person's internal world. The FBT manual allocates just four sessions at the end of treatment to problem-solve any remaining issues relating to adolescent development. What might your youngster need, after years of trying to fit into a world that doesn't understand neurodivergence? Personally I think that if your child is 'stuck', or keeps relapsing, then you could seek expert psychological support.

The absence of research means we need clinicians experienced in both autism and eating disorders, we need to compile the anecdotal evidence from many young people, and we need to use parents as experts on their child.

There is one principle I feel is probably worth keeping, and that's to keep parents in the loop, so they can support their child through the practical challenges of recovery. From the experiences collected on this page, I can't imagine how individual therapy can work unless parents are giving support at home. I don't know of any success story where parents have been told to back off and let their child make all their own choices, eat (or not eat) alone, and abdicate their power to walk the path alongside their child. So when you're exploring individual therapy as an alternative or adjunct to a family-based approach, check what your involvement will be, and how team work will be maintained.

Exposure therapy is used to bring the person from rigidity to flexibility. Their fears, habits, rituals, rules are identified, and they are supported to do the things they fear. 'Feel the fear and do it anyway' is best-known way to desensitise to a fear. Even if the thing remains a little fearful, the person learns not to fear the fear, because it's not as bad as they imagined it would be.

Exposure therapy is not a formal part of the Family-Based Treatment (FBT) method, and it doesn't appear that it's part of the training. What does happen is that in Phase 1 of treatment, while parents are given responsibility for meals, they're also asked to get their child back to a good range of foods and to normalise behaviours. No particular method is proposed to do that.

Exposure therapy is very much part of Cognitive Behavioural Therapy (CBT).

Clinicians and parents can learn about exposure therapy within eating disorders: see my book review here.

When I hear clinicians who treat ARFID I am impressed by their skills in involving the person, getting buy-in, and using techniques to progress in gradual steps. They avoid overwhelm, so the person doesn't shut down, they know about trauma and the nervous system, and avoiding overwhelm.

When done poorly, a parent may be told, 'Get your child to eat more foods.' No guidance, nothing about whether to go gradually or all-in, no instructions about the all-important need for systematic repetition.

When the food gets thrown at the walls, parents may be told, 'If they don't eat it, take away their phone', or 'Keep them at the table until they eat it.'

It's no surprise that among autism parents especially, such poor practices get bad press.

This is not evidence-based exposure therapy. It seems to me that few eating-disorder professionals (whether using FBT, CBT or other) have been trained in exposure therapy. Yet they may be using their own version of what they think it is.

Given you may not have a choice of treatment provider, what you can do is get educated about using good principles yourselves, at home.

At home, we're not doing exposure therapy, but we can do some really effective coaching. Lots in Chapter 9 of my book 'Free your child of fears and rules with exposure', and in my Bitesize audio collection. And I do a workshop on this.

You can then tailor the exposure work to suit your child. It starts with taking stock of all the rules and rituals and habits brought on by the eating disorder. There shouldn't be any force, any bullying. While some fear foods or fear situations may shift easily, there will be others you'll put on hold for weeks or months, because for some unknown reason your child finds them particularly hard.

"My daughter is weight restored but still inflexible about food. I attended Eva Musby's webinar on achieving flexible eating a few weeks ago and felt really empowered to try and give it a go (gently!). I read somewhere that crunchy foods are good for those with sensory seeking behaviour. My daughter loves crunching raw carrots so I bought some sugar snap peas and popped 5 on her plate last week (raw). Yesterday she voluntarily had 10 with her lunch! It's the first time she has had something new in her very restricted diet for months and I couldn't be happier."

"If your child is autistic, this can honestly be the most traumatic and counterproductive thing imaginable. Speaking from experience. I was told to push fear foods. Absolutely disastrous consequences. Does nothing except make fear of food greater. Desensitisation does not work with autistics. It caused so much additional distress. Safe foods are just fine. The entire approach with ED needs to be updated and tailored to suit each individual. Thank you Eva, for asking the questions."

From the above quote, you can see why I was intrigued.

I'm wondering, were these fear foods 'pushed'? Were parents or clinicians 'forcing' them?

If the answer is yes, then sadly the family missed out on evidence-based, expertly-applied exposure and desensitisation therapy. Proper exposure therapy is always done with the person's willing buy-in.

And it seems there was no expert guidance for the parents: they were left to 'push' or 'force' fear foods and fear situations.

So what can a parent do:

• get a real specialist to expertly guide exposure methods?
• throw the whole exposure thing out, letting progress happen naturally in its own sweet time?
• adapt good principles to drive or nudge progress?

"Forcing fear foods on autistics with sensory difficulties greatly enhances the fight-flight reaction and increases anxiety, causing further difficulties.
If the person themselves wants to increase their food range, that needs to come from them at a time when their nervous system is relatively calm.
Stephen Porges' work on the Polyvagal theory has been key for us. The need to create safety first which might be by eating a set type of food in their room under a blanket!! Whatever works to calm their nervous system but still get the food in.
Then once they trust you and they are in a better place nutritionally, it may be that they feel they can begin to take some risks and try tiny bits of new things but not with any pressure to finish that new thing or you might make it impossible for them to try."

"There are many autistics who really struggle with eating out, even with no ED. It’s just too overwhelming: all the noise, social overwhelm, unknowns. We need to be aware that even if our kids could do that before it is probably because they were masking, which creates its own problems.
Maybe letting the child take their safe food to a restaurant might make it possible for a special occasion for some, but we always need to weigh up the risks of overwhelming the ND nervous system, using too many ‘spoons’ and causing meltdown."

Evidence-based exposure therapy — properly done — requires the person's buy-in. It is never imposed.

At home — where the best you can do is coach along exposure principles — it's ideal if you can get your child's participation. Often, our child becomes more willing as their brain improves thanks to nourishment, weight restoration and time.

In my resources I also propose how parents can drive progress without it. That bit may not be for you: as the expert on your child, you can educate yourself on all this and decide what makes sense to you.

"Honestly, asking her is what worked always, how she would prefer to do something, if she would like to, if she can suggest alternatives."

"Everything has been on her terms, slow and steady as above. All I've asked is that she eat enough of all food groups."

Some parents of autistic youngsters tell me how they cannot request a change, but they can nudge. They try and be patient and go at their child's pace.

"We suggest e.g 'Would you like to go out to eat for your birthday?' Or 'Remember how much you liked …, would you like to go again, or try something new?’"

"We went to the cinema a few times and she brought her safe snacks. Then we suggested we eat beforehand as a trip out."

"We haven't pressured her, though I have had moments of desperation where I've begged her to do/stop stuff."

"Making ‘a thing’ out of something by mentioning it never went well."

"If you think you are dealing with PDA (Pathological Demand Avoidance, then tread extremely carefully! Then pretty much all you can do is ‘strewing’: instead of directing them toward the activities, we let go of any expectations with the activities. Exposures don’t work in this situation and usually cause food to be dropped, so the list of things they will eat gets smaller and smaller — a risky situation."

"Pushing any food/drink she wasn’t ready for was extremely unhelpful and just made everything so much worse. It wasn’t until I stopped, stepped back and just cheered her on (with the patience of a saint) that we saw her true courage appear. My daughter needed to take control and only when she was ready herself could she begin to eat and drink again, introducing items when she felt okay to do so. As long as she remained medically stable, I supported her to do it her way and at her pace."

But having an autistic child with a PDA profile doesn't mean that nudging won't work:

"My son had started to have an OCD ritual where he runs up and down our front stairs every night before bed. We have wanted to stop this behaviour, as it was fuelled by anxiety and his anorexia. He had been a bit sick with a cold and said to me ‘I don’t want to run up and down the stairs but I know I have to’.

I said to him, ‘maybe you don’t have to. I think you can manage not doing that tonight, how about you share with me one of your favourite funny videos instead tonight?’

And we did that, and have been doing it every night since. And he has been OK so far, not doing his nightly running up and down the stairs."

Here's what I know of neurotypicals: with no deliberate work, quite a few 'rules' may naturally fade away with nutrition and time. But some rules remain, and the young person may seem 'stuck' with them long-term. This seems to maintain an overall miserable, rigid state. So for those 'stuck' fears it's useful to understand exposure principles.

If your child is autistic, you'll be the expert on judging which seems best.

"My daughter slowly dropped most of the ED habits as she recovered and matured. We are 2yrs down the line. Much better but not totally out of the woods."

"Not even mentioning many of the ED habits, and just focusing on eating enough. The habits just dropped away."

First, a call for great care:

"We ask that eating disorder researchers, service managers, and clinicians remain open-minded and self-reflective, practising with epistemic humility, in an effort to bravely challenge neuronormative treatment conventions and take an ethical and person-centred approach to improve treatment engagement, appropriateness (social validity), prevent iatrogenic harm, and contribute to evidence that will inform dignity-based practice." (Cobbaert & Rose, 2023)

I like how this parent describes how treatment evolved:

"It’s difficult to say exactly what was different. There wasn't any named 'approach'. There was A LOT of trial and error. For instance, sitting alongside instead of opposite, using flip charts to name difficulties and then feelings. I think the most important part was her therapist being individually focused upon my daughter and reassessing and evaluating the sessions where things went well or badly, and considering the sticking points etc for the next week. She really got individualised care – much of which I was not witness to as she was alone."

Another parent wrote:

"We truly did have a great team who included us in everything and always said 'you know your child more than anyone'. They listened to us, included us, and whenever we had an idea they would try our suggestions. This I believe was paramount to her recovery process. We’d be secretly praying our suggestions would work and hope we were right (and we were each time). She is in recovery, living a normal life without ED. She is currently navigating her life with autism."

There should be more and more clinicians who will take care of the intersection of autism and eating disorder. There's been a surge in webinars and they are extremely well attended by professionals.

I am going to list just three clinicians who may help you, and that's just because I know them a little or seen a little how they respond to questions, and they have helped me with this page, for which I'm very grateful. I don't know the details of how they work so check them out for yourself.

Fiona Fisher Bullivant, advanced nurse practitioner autism and learning disabilities in Greater Manchester Mental Health Trust, co-author of the book 'Autism and eating disorders in teens’ – a guide for parents and professionals'. She offers private consultations worldwide for parents and other professionals who care for a young person with autism and an eating disorder.

Paola Falcoski, dietician, specialising in ARFID and autism, and also training in Somatic Experiencing therapy for trauma.

Kate Chacksfield of Chax Media, who has lived with autistic individuals all her life, has coached many over the past twenty years and also has some experience of supporting family with anorexia.

If you're in the UK, head over to my 'England' page for information on relevant NICE guidelines, and on extra support from local authorities — in particular the NHS's 'Dynamic support register (DSR) and the Care (Education) and Treatment Review policy — C(E)TR. This is especially important if you want to avoid a hospital admission.

Eating Disorders and Neurodivergence: A Stepped Care Approach by Cobbaert & Rose (2023). From Australia's National Eating Disorders Collaboration (NEDC) This is a super-comprehensive report. Don't let the length put you off: it will answer so many of your questions! Indeed I have already quoted some of their gems on this page.

PEACE Pathway: For a place that tries to be as scientific as possible while also valuing the real-world know-how of experts-by-experience, see PEACE Pathway. PEACE is 'a Pathway for Eating disorders and Autism developed from Clinical Experience'. There's a lot there. Note that the site currently tends to be more geared to adults than to children, and I don't think it's being kept up to date. But you should still find lots of useful ideas. As parents you could start with this page on meals. If the website is open to updates, why not contribute to the website as you develop your own experience of what helps your child?

On this PEACE Pathway conference on YouTube, there is some emphasis on how research and clinical practice can be organised, but here are two sections that parents may find useful in practical terms:

• 1:43:10 Pooky Knightsmith talks about her experiences of co-occurring autism and anorexia nervosa.
• 2:23:53 Katie Williams, dietetic adviser to the PEACE Pathway, discusses adapting the dietetics pathway for autistic people.

From the work on PEACE Pathway, Kate Tchanturia edited the book ‘Supporting Autistic People with Eating Disorders’. I present a review of this book here.

Having just mentioned Pooky Knightsmith, do check out her resources, as she understands autism and eating disorders from personal experience. She is also an expert on everything to do with schools. I show her book further down. Her website is here and her eating disorder YouTubes are here. It's well worth spending 45mn listening to her presentation on 'Anorexia and Autism – lessons learned on the road to recovery', because she describes all the modifications that the hospital and outpatient services felt free to make once she had the Autism diagnosis.

Read and send your clinicians to this paper: 'Widening the reach of family-based interventions for Anorexia Nervosa: autism-adaptations for children and adolescents' (you could focus on Table 2)' by Rachel Loomes and Rachel Bryant-Waugh.

This paper should also 'speak' to both parents and clinicians. It describes aspect of treatment that need to be individualised: '‘It’s not that they don’t want to access the support . . . it’s the impact of the autism’: The experience of eating disorder services from the perspective of autistic women, parents and healthcare professionals' Babb, Brede et al (2021)

The book ‘Autism and eating disorders in teens’ by Fiona Bullivant and Sharleen Woods offers an insight in the challenges of treating autistic teens with an eating disorder (I tell you more about this book, as well as Pooky Knightsmith's book, here).

The parent organisation F.E.A.S.T. has an excellent website on eating disorders. It has several good blogs on autism: use the Search function to find them all. Check out also the discussions on F.E.A.S.T.’s  Around The Dinner Table forum, for instance this one. Likewise you can find lived experience stories on Australia's Butterfly Foundation.

Check out the article 'Adapting Intuitive Eating for Neurodivergent People' and see what in there might be helpful for your own child.

Eating Disorders Victoria has a good introduction to autism: https://www.eatingdisorders.org.au/eating-disorders-a-z/eating-disorders-and-autism/

The UK's National Autistic Society has this page on autism: https://www.autism.org.uk/advice-and-guidance/topics/mental-health/eating-disorders

The PDA society has a page on eating disorders: https://www.pdasociety.org.uk/resources/eating-disorder-support/

This page from Embrace Autism talks about various eating disorders: https://embrace-autism.com/autism-and-eating-disorders/

I've heard strong praise for Jenny Langley’s eating-disorder workshops for parents, including the workshop she does specifically on autism. A parent also told me how much she appreciated Jenny's regular support group for those caring for an autistic loved one. Jenny Langley send me her materials relating to the 'autism' workshop and it is very much in line with what you are seeing on this page here. Jenny specialises in ‘The New Mausdley Method’. I explain here the differences between this and a family-based approach. But from the handouts and video clips and comments I've received, Jenny Langley's workshops are very much in line with what you see in my own resources. Regarding autism, note that Jenny Langley also recommends workshops from Jenny Phaure.

These may be relevant to you, whatever the diagnosis. Here are some that have been recommended by parents or professionals:

Parent self-help groups can be both wonderful and harmful. Some groups have strong voices — parents who give out the same black-and-white advice to every member. This may confuse you and lead you astray. In one group I have witnessed aggressive language towards some parents of an autistic child: this is because moderators are concerned that when parents deviate from their advice, the child is getting inferior treatment. Yet the general view in professional circles is that every child and family has their own situation, and even more so with autism.

I know this Facebook group a little: ‘Autism and Eating Disorders – A place of Care & Understanding’ and to date I have found this group is indeed a place of care and understanding. I see lots of ideas and tips being exchanged in a respectful way. Just like in any group, be alert to dogmatic opinions. Anywhere you are told that "xxx doesn't work with autistic people", hear it as a personal experience, among a range of diverging personal experiences. We are not at the stage where any blanket statements are supported by research. I hope this page has shown you that different things work for different people.

Where to start?! Information on autism is everywhere. Check out your country’s autism society/charity. I’ll just share a few sources that appealed to me as I was trying to educate myself.

On autism in girls, I liked the book ‘Aspergirls: Empowering females with Asperger Syndrome’ by Rudy Simone.

If you're busy learning what autism might look like in girls (without the 'eating disorder' aspects though), you might enjoy Tony Attwood’s lively talks, for instance this YouTube: ‘Asperger in the feminine and comorbidities’. And there's an excellent booklet, 'Autism, Girls & Keeping it all inside', from UK charity Autistic Girls Network, which will help you recognise if your daughter might be autistic, and proposes practical measures, especially for schools.

More books that parents or professionals have recommended to me (though once you get into this field you'll realise there is a lot of dissent around some of the things written about 'Aspergers')

How can psychiatric inpatient units do a better job? "It's not rocket science" is a report from the UK on how inpatient CAMHS sensory environments can be improved.

There are links to personal accounts of autism and eating disorders on the UK's National Autistic Society site here. (I haven't (yet) checked them out).

I have enjoyed learning a bit about autism from these sites:

• Minds & hearts
• Autistic not weird
• Supporting autistic girls: 12 courses & resources worth sharing, by Pooky Knightsmith

Compulsive, excessive exercise: I collect resources here.

ADHD: a page from me here.