Last updated on September 7th, 2021
Help if your child shows signs of autism and had an eating disorder
This page aims to guide parents who know or suspect their child is autistic, and to flag up how this may change aspects of the eating-disorder treatment. There are lots of quotes from parents, showing what worked or didn't work for them. I include many links for you to read more from expert sources, and do check out the comments at the bottom.
It is autism or a temporary effect of starvation?
If your child has a restricting eating disorder – such as anorexia nervosa, atypical anorexia nervosa, or ARFID – then while they are malnourished, they may display some characteristics of autism. Often that does not mean your child is autistic: what you’re seeing is the body’s response to starvation.
But it may turn out that your child is indeed autistic. Perhaps as you look back over their earlier years you will recognise signs of autism that may have been heightened recently because of the eating disorder.
Does autism change how the eating disorder treatment is done?
Yes, it’s likely that any ‘standard’ treatment must be adapted, individualised.
There are biological imperatives for anyone with an eating disorder: regular nourishment, and recovery lost weight. How to achieve this and how to work on other aspects of recovery, may need to vary.
Some parents or 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.
Which aspects need to be changed?
I’ll give you pointers and examples further down. For now, the answer is ‘it depends’. For instance, some parents of an autistic child enthusiastically tell me that the tips in my book ‘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.
Does autism affect recovery from the eating disorder?
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.”
Is autism common with eating disorders?
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.
Defining autism / ASD / ASC / Asperger’s
‘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 something that’s wrong. And while we can talk of having an eating disorder (because it’s an illness), people generally don’t want to be described as ‘having autism’. More on generally accepted language here, though what matters is the preferences of the person you’re talking to.
What signs might flag up autism?
Here’s a very rough, non-exhaustive list of possible flags for autism.
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.
- 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
- ‘Stimming’ (short for ‘self-stimulatory behaviour’): (a repetitive 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 your child might not have autism but inflammatory brain disease. This matters because there are medical treatments for it. Other keywords to learn about inflammatory brain disorder are encephalitis, PANDAS, PANS or BGE. [I am working on a page on this, just waiting for some specialists to check it. Contact me if you'd like access to my draft, or if you can help the document move along with your expertise.]
How do I know if my child is autistic?
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.
Is there a quick diagnostic tool?
For girls, the Questionnaire for Autism Spectrum Conditions (Q-ASC) may give you a rough assessment. You can find it here.
A commonly used tool is the Autism-Spectrum Quotient test (AQ). It’s not great for females. Find it here.
Autism expert Tony Attwood suggested on this webinar that when their child has an eating disorder, parents run through these questionnaires, just enough to be able to go to the eating disorder clinician and flag up the possibility of autism.
Should my child be assessed for autism?
I believe that if you are a professional treating eating disorders, you or members of your team should have the competence to screen for autism and the expertise to treat accordingly (and while you’re on the alert for autism, be on the lookout for an inflammatory brain disease like PANS or PANDAS).
“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.”
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.
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 AD 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."
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. Note that if your child has co-occurring ADHD, medication for this may be an appetite-suppressant. There are no drugs to cure anorexia or ARFID, but some help with co-occurring difficulties.
Is autism more common with ARFID or with Anorexia?
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.
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 may start with any number of triggers, or I’ve heard of people developing it after a number of hospitalisations for ARFID (possibly because the person cannot help but mimic others or possibly a stress/trauma response from being in an away from home and/or group treatment setting). The 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.
Note that if your child was diagnosed with ‘atypical anorexia nervosa’ it’s basically anorexia nervosa, and it can be just as serious. So, what’s the difference? A clinician looks up a chart of BMI across your child’s age range and finds your child’s weight is within a ‘normal’ range. It might still be a terrible weight for your child. The ‘atypical anorexia’ label is 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.
Is my child’s resistance due to the autism or to the eating disorder?
I remember my daughter’s distress and resistance spiking when we switched her yoghurt from strawberry to raspberry. The brand was the same. The taste was similar. What could be happening? To us it was obvious: from the label, the raspberry yoghurt had two (yes, two!) calories more.
Because my daughter had anorexia, and no autism, and we were beyond the first few weeks of refeeding, it made sense to support her to expand her range to the raspberry yoghurt, to overcome the fear of the ‘extra’ two calories.
If you suspect your child is autistic, it’s harder to decide how to proceed. Your child might be telling you, “It’s my autism that makes the raspberry version impossible.” Or “Because of my autism, this is my maximum calorie count / my maximum weight.”
"We challenged foods I knew she liked but said she didn’t want. She felt comfortable knowing I would never push her to try a food she did not historically like."
I’ll refer you to Pooky Knightsmith, who discovered later in life that much of her eating disorder difficulties were explained by autism, speaks from experience (see her resources below). This YouTube of hers on autism and anorexia: ‘Five things you need to know about the interplay’ is great. She reveals that at times, she did use the autism as an excuse to avoid an eating-disorder fear.
Even without an eating disorder, parents ask ‘How do I stop my child using autism as an excuse?’ Here is an interesting and compassionate piece on this.
How does autism change the way the eating disorder is treated?
Parents and therapists of autistic people all tell me 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, and that includes 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 the expertise is required throughout.
“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. I’ll give you a broad overview. It may be wrong for your child. Keep doing your research and use your knowledge of your child.
Treat the eating disorder, befriend autism
Here’s a principle for starters: The eating disorder should and can be treated. The autism is ‘a friend to be made’. Don’t let autism stop you from treating the eating disorder. You have to take care of your child’s health, they must get nutrition, they must return to a healthy weight. You can’t just let them be, you can’t leave them in the dangerous zone (which to them feels like a safe zone) where they are malnourished. And once they’re weight-restored, the work continues to ‘normalise’ as many behaviours and thoughts as possible.
Autism advantage: the love of rules
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 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."
Autism advantage: logic works
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.”
"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 one more:
“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."
Autism advantage: mimicking the good stuff
Many parents have told me of the major role 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.”
Autism advantage: once it works, it works?
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.”
Refeeding: still essential, perhaps slower
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? Because while your child is malnourished and/or underweight, their brain is working against them, 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.
With autism, some say the emphasis may need some shifting.
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 anyway, 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."
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.”
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.
"The greatest impact on his recovery was after we managed to spread the food over the day more evenly."
Working on food flexibility
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.
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, 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 or the strong taste, the colour, the fact foods are touching, or that they’re the wrong brand?
If rigidity around food is due to autism, then my understanding is that you would aim to address 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 helsheets) 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 *
Does weight gain help with mental health?
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 – atypical 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 in copingskillsforkids).
“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.”
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.
Reduce the extra stressors that come with autism
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 decide to allow more movement, more exercise than they would allow normally. It’s a tricky decision because exercise compulsion is part of anorexia nervosa and must be addressed.
A residential centre might reduce the visual or auditory ‘noise’ that adds to an autistic person’s anguish.
Psychotherapy will be different. For instance, your autistic child might hate groups. And asking them “How do you feel?” may make no sense at all to them. It may also be helpful to reduce the number of clinicians your child has to interact with.
Assess which behaviours to tackle at any time
With autism, children have many anxieties and some display a strong need for control. 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).
Here’s another example. 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.
“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.
Be a flexible problem-solver
You are the expert on your child. 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 messages about the ‘only’ way that works to ‘beat’ the eating disorder.
For example, 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 an autistic child:
“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.”
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 need for 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."
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 the care reflected in the above. Nobody wants to see a walking compulsion simply shift to a gym compulsion.
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."
And what if at times they need to wiggle or walk?
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.
Remember you are the expert on your child. So, speak up in meetings with the clinical team so you can problem-solve together. Do they usually weigh ‘open’? (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.
Take charge or involve your child?
With neurotypical youngsters with anorexia or atypical anorexia nervosa, treatment usually works best when parents take charge and don’t make room for negotiation with their child. Parents decide on the menu alone, shop alone, cook alone, decline any discussion on ingredients, serve up the plate, and don’t engage in negotiation or bargaining. Parents prevent vomiting and they make sure exercise only happens within agreed parameters, if at all.
I’ve heard it confirmed over and over again: this principle of parents taking charge really helps many youngsters to make progress, when previously everyone was ‘stuck’. It works because the parent is ‘giving permission’ to the child to do the very things which the child cannot allow themselves. Recovered youngsters have reported what a relief it was when they were prevented from exercising to exhaustion, from going hungry.
I’m also hearing plenty from parents of autistic children (and occasionally from parents of neurotypical children too) that it really did not work when they took charge.
Much better when they collaborated, involved their child, or ‘nudged’.
“With my daughter I had to make it look like everything was her own decision. Everything!”
My impression is that progress (weight gain) may be slower that way, but at least there is progress, steady progress.
I hear from parents at various points along a continuum: at one end, collaboration, flexibility and joint problem-solving with the young person. At the other end, parents are in charge, make the decisions, and make use of ‘leverage’.
Here is an example from a parent at the ‘in charge’ end, whose 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 it 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 done 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.”
Planning meals with your child?
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.
The art of ‘suggesting’
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?” 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.
Involving a youngster who ‘needs’ to be in charge
All youngsters want to feel in charge of their lives, to enjoy autonomy and be in choice. It’s really hard that when they can’t eat for their health, we adults have to step in. With autism, the difficulty is that some (but not all) children seem to consistently do worse when they feel they cannot be charge.
I’ll repeat: for most neurotypical children, and for an unknown proportion of autistic children, eating disorder recovery works best when parents take charge of everything their child cannot regulate by themselves: usually meals, exercise, purging. That’s in a first phase. Later (in what is usually labelled ‘Phase 2’ and is sadly often missed, so check out Chapter 10 of my book or my workshops or page 4 of my free helpsheets) parents coach their child to be in charge of themselves again, they experiment, they monitor, until their child can fly with their own wings.
But with some autistic youngsters, you may need to find a way to guide them while making them feel, to some extent, like they have decision-making power and autonomy.
There’s no one way, and no evidence-based way, to do this. The best I can do is share some stories.
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 ‘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.
Use of ‘leverage’, ‘consequences’ (punishments)
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.
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. ‘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, 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).’
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?
Clearly, ‘consequences’ works for some parents, and that’s why they are on forums urging other parents to do it. 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. Yes, I know, we’re told to ‘externalise’, and parents say they’re only the enemy ‘of the eating disorder’, not of their child.
But 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."
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)."
Be clear about ‘consequences’. 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.
Communication with your child
In my resources I take you through many tools and sample phrases to help you communicate with your child, to show love, to soothe, to problem-solve and to give instructions. These are usually helpful with neurotypical people. Quite a few parents have told me that these tools also worked well with their autistic child – for instance the general ‘Connect before you Direct’ principle.
"I believe it’s imperative to 'Connect' before any 'Direct' goes on…Verbal empathy just needs to be tailored to each individual. If I can make my child feel heard…that I understand the frustration and repeat back to them what they are saying in clarifying the feeling they currently feel, then we get far further in unravelling the anxiety."
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."
Group therapy and multifamily therapy bring up extra considerations:
“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.”
Keep tracking needs and capabilities
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.
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.
Is it true that ‘FBT doesn’t work for autistic youngsters’?
As parents begin to research autism and eating disorders, there is talk that ‘FBT doesn’t work with autistic youngsters’. FBT meaning ‘Family-Based Treatment’.
Careful! Don’t throw the baby out with the bathwater! Some things work in some families and not in others.
“Don’t hear ‘autism’ then immediately dismiss FBT! We’re 8 months in and it’s been working well for us.” (A parent on the Around The Dinner Table forum)
Check this: What do you mean by FBT? Which bit of it is not working?
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 is detailed on the structure of the treatment, but not on 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.”
What if FBT isn't working?
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 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 of know of from professional associations in any country. I don't think that autism was on many experts' radar until recently.
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 without parents giving support at home. It doesn't sound safe to tell parents 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. That's my opinion, and if that sounds true to you, then check this with therapists when you are exploring alternatives to a family-based approach.
How do clinicians tailor the treatment?
Hopefully all of the above will help clinicians and parents to steer the treatment in ways most likely to work. I like how this parent describes the process:
"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."
More help on eating disorders with autism
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, but you should still find lots of useful ideas. As parents you could start with this page on meals. And here's a suggestion: 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 haven’t got it so I can’t give you any details. Here’s one parents’ opinion after reading the book, and I invite everyone here to share their knowledge in the Comments section at the bottom of this page.
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. Her website is here and her eating disorder YouTubes are here.
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 the 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.
Books written on ARFID or for ‘picky eating’ may be relevant to you. Here are some that have been recommended by parents or professionals:
One mother told me she really appreciated Jenny Langley’s eating-disorder workshops for parents, as well as her support group for those caring for an autistic loved one with autism. Jenny Langley trains parents in ‘The New Mausdley Method’. I explain here the differences between this and a family-based approach. As ‘New Maudsley’ is all about communication skills for parents (it’s not a treatment in itself) you are likely to find some useful tips there. Its examples tend to be about parents ‘nudging’ and waiting for ‘readiness’ more than the ‘taking charge’ of a family-based approach, so it may be an important part of your repertoire, as parents.
My own book and workshops rest on a family-based approach (like FBT or similar) where parents actively support their child to eat and cope with their emotions, to coach them back to ‘normal’, while communicating with skillful and heartfelt compassion. There will be tips that are useful to you, and some that are not. I think that with an autistic child parents need, more than ever, to read widely – rather than getting attached to any particular method.
Look out for parent groups for support. I always warn parents that self-help groups can be both wonderful and harmful. Groups with parents who give out the same black-and-white advice to every member, may confuse you and lead you astray. Every child has their own situation, and even more so with autism.
I know this Facebook group a little: ‘Autistic Girls with 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.
More resources on autism in general
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, and I notice Tony Attwood recommends it too.
You can also look out of any of Tony Attwood’s resources, for instance this YouTube: ‘Asperger in the feminine and comorbidities’
More books that parents or professionals have recommended to me:
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
I used to be totally ignorant about autism. Everything on this page was made possible by other generous people who sent in their stories and comments. Any evidence of ignorance or incompetence here is mine, not theirs. I have not named the parents, to keep their children’s lives private. I would like to name and thanks several people for reviewing or editing this page to make is as useful and accurate as possible:
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 also offers private consultations worldwide for parents and other professionals who care for a young person with autism and an eating disorder.
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.
(and more – I am checking how they would like to be acknowledged)
I am sure that visitors will benefit from reading your comments. Feel free also to contact me – my first priority is to do no harm. Think also of contributing to PEACE Pathway as that is likely to be the main go-to for the combination of autism and eating disorder.