21year old Autistic daughter wont eat

Have you taken her to the GP or dentist? She may have pain in her mouth or swallowing difficulties and not be able to express this to you even though she’s verbal.

Hi , sorry yes she has been to dentist, nothing wrong with her teeth or mouth, she just doesnt want to eat, she either bites the smallest bits and spitballs them out of her mouth, or spits them onto her plate. It took 6 hours on xmas day for her to eat her tiny dinner, with all the spitting and noises that goes with it. we spend about 8 hours a day sat with her while she eats, and thats only 2 meals as she will take her toast into her room at breakfast and do the same thing to that.

There could be many reasons as to why she is not eating. She may not actually like the taste or feel of savoury foods or it could be something more complex like anxiety. Until you are able to eliminate possible triggers or explaitions maybe you could try buying Ensure’s from the pharmacy, they come in chocolate flavour so at least she will get some nutrition. 

Hi Sunflower,, she has a psychologist, nurses and doctors who specialise in it all, but they cant seem to help. She loves where she is at residential college, but she is the same there as she is at home, but at home we can persist in getting her to fnish her meal no matter how long it takes, she went down to 7 stone but we ahve got her back up to 7st7 , we know then she has a bit of weight behind her when she goes back to college.which eases it all a little bit.

Im glad they sorted out the problems for the lady you mentioned, its just so hard isnt it,,Thankyou for your reply and advice xx

Many years ago, when I was a social worker, an autistic woman who lived in a group home stopped eating and got very distressed when being assisted to use the loo. There were long discussions in team meetings about possible causes.

We discovered that staff were limiting fluid intake because of her tendency to spill drinks, which led to dangerous dehydration. They were also 'forgetting' to weigh her regularly as required in her care plan. This was very risky. Concerns about staff skills and experience had to be addressed as a matter of urgency.

In the meantime this woman's body weight got so low that a psychiatrist removed her from the group home using emergency powers. As soon as she was in a different placement the problems resolved and she began eating again. Because communication was very limited we never knew exactly what had caused her to refuse food. It seemed clear that she had been expressing unhappiness about some aspect of her previous situation. 

It must be heartbreaking as parents to see your daughter refusing food and getting so distressed. Having just been diagnosed autistic at the age of 58 I have been really impressed by the ability of psychologists to listen, observe and deduce what is going on. Is there any way you could get an experienced psychologist with expertise in autism to assess the difficulties your daughter is having?

Wishing you her all the very best. I do hope things soon start to change for the better. 

Please dont think you have upset me, you havent at all :) I believe it must be psychological too,,and thats the tough bit as anything else could be worked out I guess.  Onwards  and upwards as they say,,we cant do anhing else other than trying to find out whats causing it,,and thankyou :) xx

Thank you for explaining, I understand now. Reading the other replies I am concerned I have upset you. I’m sorry if I have. 

As I mentioned above, if the cause is not physical or sensory then it is more likely to be a psychological reason such as anxiety. As the other person suggests, talk to her. She may not be completely aware of her reasons or she may struggle to process all of them and then verbalise it. 

Maybe try and talk to her about her days at college. 

If you quickly google chewing and spitting behaviour it comes up with information regarding eating disorders, or you add autism to the end it comes up with challenging behaviours and also regression so you are probably on the correct train of thought in that sense. 

All I can really say is to keep going. You’re doing the best you can. 

You have helped more than you know, its hard to explain to people who arent in the situation of having autism or being around it, so being here is helping me. Ive looke don the top sites, and them saying get her to sit up straight with towels rolled up by her back, and im like what the actual""",, she sits with her legs folded under her and no amount of telling her to sit properly will work,,putting food in ice cubes was another stratergy,, I know it works some some people but not for her,,its just disheartening when top peeps say this, it makes me feel it will never end and it actually may not, who knows. But any help or talking is just fabulous thankyou xx

Don't feel bad about yourself - it sounds as if you are trying your best to try and help your daughter and that's all you really can do.  It sounds like the causes of this are not straight-forward so you shouldn't beat yourself up for not yet having found the answer.  If it was a trivial problem you would have already have solved it.  You just need to keep trying to find that one piece of evidence that unlocks the puzzle.  Your idea of trying to get as many suggestions as you can is a great one because often many minds are better than one.

Sorry if we haven't been able to help yet but someone may have a bright spark at some point.

Sorry, I meant a menatl age in as what sh watches,, my little pony , tweenies an such like, she cant go out on her own as she has no sense of direction, doesnt understand money, things like that, she has no trouble telling us what she wants and does play up if we dont or cant get her what she is after. toy or dvd wise.  When she comes home at weekends she is on countdown to wanting to go back to see her friends there,  it may well be a stress coping stratergy its just working out what it is,, she  loves being at home to and gets upset if she is away at respite, which is hardly ever. I know it seems im not tking in any advice but really I am, its just we have tried everything and wanted to see if there is a glimpse of hope from someone else but it is all helping just by being listened too xx

It sounds very difficult.  I sometimes say : "You can lead a horse to water, sometimes you have to drown it."  But in this case I would guess holding her head under water till she drinks or drowns probably isn't appropriate...  But it seems like currently she doesn't want to drink herself either even if led to the water hole.

It does sound a bit like your daughter is sort of regressing.  If there's no obvious physical reason for these things, maybe there's an underlying emotional/psychological reason?  It sounds as if previously she was in a stable if not ideal situation, what was happening around the time when she started going backwards?  What things might have changed or situations that occurred that potentially could have been triggers?  Maybe try not focusing on the food , but ask her if she feels OK or not, are there any things that are worrying or concerning her?  Are there any difficulties that she perceives she is having?

Have you discussed this with your GP at all?  He might have some suggestions or he might be able to have a talk with her and explain where things are likely to end up if she carries on down this path.

I’m finding this quite confusing. You mention in your original post that your daughter has a predicted mental age of 4-5 but say she doesn’t have any issues with communication? 

There are many blogs of regression in autistic adults. Chewing and spitting is a stage of our development. Maybe she has reached a stage in her life that she is finding is too difficult. Maybe being an adult is hard for her to manage and the only way to deal with this is to regress back to a stage in her life where demands were not too high?

You mention she acts in a childlike way sometimes, this can be a coping strategy to avoid demands. I know as I also struggle with this, particularly around authority figures. I also have an eating disorder and what you are revealing sounds more and more like a coping strategy to deal with stress. 

Sometimes it can be the small things that stress us out. Maybe she struggles with her life at college and the social demands of it? 

Hi, we have asked her but she just says she just doesnt want to eat, we have explained in a way she can understand why people need to et but she says she doesnt care, or says she understands then is straight back to not eating. we have tried letting her take meals into her room but she chews it up and spits it behind anything she can in her room, or just puts it in her bin. We have lots od ups and downs , her father spent Christmas, an boxing day breaking his heart to me,,from hurt, frustration and anger when she spoke to us like dirt. Thankyou for replyng, it means alot xx

These may be dumb questions, but have you asked her why she doesn't want to eat or drink?  I don't think you can make progress on this till you understand what's behind her behaviour.  Also you might want to ask whether she thinks your current approach is helping her with her difficulties or making things worse?  If she says it's making her worse, ask her for her suggestions of what she thinks might help.

I suspect you can't force a resolution to this problem on your daughter, I expect you'll have to get her to buy into understanding that she has a problem that she needs to address, and that it's something that people can try and help her with, but she needs to want that help.

Also, be prepared for ups and downs - as long as the overall progress is upwards over time you're making progress.

Thankyou for your reply,, we are already doing all these things and I can only say thankyou for trying to help, she can communicate very well with us, we have racked our brains as to why things have changed with her eating,, she did used to eat sweet things normally but now that has changed too, its a real mystery. She has a disabilities nurse at her residential college and they cant fathom it out either,,everyday is the same none are better than others, I dont know if it is a control thing as we wouldnt force her to eat and its one thing she can control herself maybe,,its like she is regressing kind of,, she is incontinent when she idnt use to be, wears pull ups as she constantly wets herself and defacates either in her pull up or on her bed,,but everything else is normal, she can act her age some days for short periods but others is more childlike..once again thankyou i know its hard to give advice when not seeing it for yourself in someone else life xx

Two months ago your post said she would eat sweet things normally, hence the reasons for my suggestion. 

Have you looked at whether this is a sensory issue? Perhaps if you see a GP they can refer her for a sensory assessment? 

I know these may seem like stupid suggestions but have you asked her if she is hungry? Maybe she has an appetite but there is a physiological reason for her not swallowing foods? 

It is very hard to assertain what the cause may be and if she has limited communication skills you will have to do all the detective work yourself. 

All I can really suggest is to keep a diary of her behaviour. See if some days or better or worse than others, see if there is a pattern. Maybe try using social stories to explain that she needs to eat and use something she loves as a tool to encourage her. Is there a possibility we may be depressed or anxious? Maybe go to your GP and ask for a specialist learning disabilities nurse?

You probabaly do all this anyway but it’s hard for me to help as I don’t know anything about your daughter, her life or what you’ve tried to help her.

Hi, we have tried these but she wont drink either, only taking the tiniest of sips and then spitting most of it back into the glass, she always has had a variety of food, but now doesnt matter if sweet, savoury, hot or cold, hard or soft, she spits eveything back our, dieticians have said we are doing everything right and that there is nothing else that can be done, atleast when she is at home we know she has eaten even if it takes all day, where as at college she can just take a bite and leave it.

Hi, we have tried these but she wont drink either, only taking the tiniest of sips and then spitting most of it back into the glass, she always has had a variety of food, but now doesnt matter if sweet, savoury, hot or cold, hard or soft, she spits eveything back our, dieticians have said we are doing everything right and that there is nothing else that can be done, atleast when she is at home we know she has eaten even if it takes all day, where as at college she can just take a bite and leave it.

Hi Sunflower,, she has a psychologist, nurses and doctors who specialise in it all, but they cant seem to help. She loves where she is at residential college, but she is the same there as she is at home, but at home we can persist in getting her to fnish her meal no matter how long it takes, she went down to 7 stone but we ahve got her back up to 7st7 , we know then she has a bit of weight behind her when she goes back to college.which eases it all a little bit.

Im glad they sorted out the problems for the lady you mentioned, its just so hard isnt it,,Thankyou for your reply and advice xx

Many years ago, when I was a social worker, an autistic woman who lived in a group home stopped eating and got very distressed when being assisted to use the loo. There were long discussions in team meetings about possible causes.

We discovered that staff were limiting fluid intake because of her tendency to spill drinks, which led to dangerous dehydration. They were also 'forgetting' to weigh her regularly as required in her care plan. This was very risky. Concerns about staff skills and experience had to be addressed as a matter of urgency.

In the meantime this woman's body weight got so low that a psychiatrist removed her from the group home using emergency powers. As soon as she was in a different placement the problems resolved and she began eating again. Because communication was very limited we never knew exactly what had caused her to refuse food. It seemed clear that she had been expressing unhappiness about some aspect of her previous situation. 

It must be heartbreaking as parents to see your daughter refusing food and getting so distressed. Having just been diagnosed autistic at the age of 58 I have been really impressed by the ability of psychologists to listen, observe and deduce what is going on. Is there any way you could get an experienced psychologist with expertise in autism to assess the difficulties your daughter is having?

Wishing you her all the very best. I do hope things soon start to change for the better. 

Please dont think you have upset me, you havent at all :) I believe it must be psychological too,,and thats the tough bit as anything else could be worked out I guess.  Onwards  and upwards as they say,,we cant do anhing else other than trying to find out whats causing it,,and thankyou :) xx

Thank you for explaining, I understand now. Reading the other replies I am concerned I have upset you. I’m sorry if I have. 

As I mentioned above, if the cause is not physical or sensory then it is more likely to be a psychological reason such as anxiety. As the other person suggests, talk to her. She may not be completely aware of her reasons or she may struggle to process all of them and then verbalise it. 

Maybe try and talk to her about her days at college. 

If you quickly google chewing and spitting behaviour it comes up with information regarding eating disorders, or you add autism to the end it comes up with challenging behaviours and also regression so you are probably on the correct train of thought in that sense. 

All I can really say is to keep going. You’re doing the best you can. 

You have helped more than you know, its hard to explain to people who arent in the situation of having autism or being around it, so being here is helping me. Ive looke don the top sites, and them saying get her to sit up straight with towels rolled up by her back, and im like what the actual""",, she sits with her legs folded under her and no amount of telling her to sit properly will work,,putting food in ice cubes was another stratergy,, I know it works some some people but not for her,,its just disheartening when top peeps say this, it makes me feel it will never end and it actually may not, who knows. But any help or talking is just fabulous thankyou xx

Don't feel bad about yourself - it sounds as if you are trying your best to try and help your daughter and that's all you really can do.  It sounds like the causes of this are not straight-forward so you shouldn't beat yourself up for not yet having found the answer.  If it was a trivial problem you would have already have solved it.  You just need to keep trying to find that one piece of evidence that unlocks the puzzle.  Your idea of trying to get as many suggestions as you can is a great one because often many minds are better than one.

Sorry if we haven't been able to help yet but someone may have a bright spark at some point.

Sorry, I meant a menatl age in as what sh watches,, my little pony , tweenies an such like, she cant go out on her own as she has no sense of direction, doesnt understand money, things like that, she has no trouble telling us what she wants and does play up if we dont or cant get her what she is after. toy or dvd wise.  When she comes home at weekends she is on countdown to wanting to go back to see her friends there,  it may well be a stress coping stratergy its just working out what it is,, she  loves being at home to and gets upset if she is away at respite, which is hardly ever. I know it seems im not tking in any advice but really I am, its just we have tried everything and wanted to see if there is a glimpse of hope from someone else but it is all helping just by being listened too xx

It sounds very difficult.  I sometimes say : "You can lead a horse to water, sometimes you have to drown it."  But in this case I would guess holding her head under water till she drinks or drowns probably isn't appropriate...  But it seems like currently she doesn't want to drink herself either even if led to the water hole.

It does sound a bit like your daughter is sort of regressing.  If there's no obvious physical reason for these things, maybe there's an underlying emotional/psychological reason?  It sounds as if previously she was in a stable if not ideal situation, what was happening around the time when she started going backwards?  What things might have changed or situations that occurred that potentially could have been triggers?  Maybe try not focusing on the food , but ask her if she feels OK or not, are there any things that are worrying or concerning her?  Are there any difficulties that she perceives she is having?

Have you discussed this with your GP at all?  He might have some suggestions or he might be able to have a talk with her and explain where things are likely to end up if she carries on down this path.

I’m finding this quite confusing. You mention in your original post that your daughter has a predicted mental age of 4-5 but say she doesn’t have any issues with communication? 

There are many blogs of regression in autistic adults. Chewing and spitting is a stage of our development. Maybe she has reached a stage in her life that she is finding is too difficult. Maybe being an adult is hard for her to manage and the only way to deal with this is to regress back to a stage in her life where demands were not too high?

You mention she acts in a childlike way sometimes, this can be a coping strategy to avoid demands. I know as I also struggle with this, particularly around authority figures. I also have an eating disorder and what you are revealing sounds more and more like a coping strategy to deal with stress. 

Sometimes it can be the small things that stress us out. Maybe she struggles with her life at college and the social demands of it? 

Hi, we have asked her but she just says she just doesnt want to eat, we have explained in a way she can understand why people need to et but she says she doesnt care, or says she understands then is straight back to not eating. we have tried letting her take meals into her room but she chews it up and spits it behind anything she can in her room, or just puts it in her bin. We have lots od ups and downs , her father spent Christmas, an boxing day breaking his heart to me,,from hurt, frustration and anger when she spoke to us like dirt. Thankyou for replyng, it means alot xx

These may be dumb questions, but have you asked her why she doesn't want to eat or drink?  I don't think you can make progress on this till you understand what's behind her behaviour.  Also you might want to ask whether she thinks your current approach is helping her with her difficulties or making things worse?  If she says it's making her worse, ask her for her suggestions of what she thinks might help.

I suspect you can't force a resolution to this problem on your daughter, I expect you'll have to get her to buy into understanding that she has a problem that she needs to address, and that it's something that people can try and help her with, but she needs to want that help.

Also, be prepared for ups and downs - as long as the overall progress is upwards over time you're making progress.

Thankyou for your reply,, we are already doing all these things and I can only say thankyou for trying to help, she can communicate very well with us, we have racked our brains as to why things have changed with her eating,, she did used to eat sweet things normally but now that has changed too, its a real mystery. She has a disabilities nurse at her residential college and they cant fathom it out either,,everyday is the same none are better than others, I dont know if it is a control thing as we wouldnt force her to eat and its one thing she can control herself maybe,,its like she is regressing kind of,, she is incontinent when she idnt use to be, wears pull ups as she constantly wets herself and defacates either in her pull up or on her bed,,but everything else is normal, she can act her age some days for short periods but others is more childlike..once again thankyou i know its hard to give advice when not seeing it for yourself in someone else life xx

Two months ago your post said she would eat sweet things normally, hence the reasons for my suggestion. 

Have you looked at whether this is a sensory issue? Perhaps if you see a GP they can refer her for a sensory assessment? 

I know these may seem like stupid suggestions but have you asked her if she is hungry? Maybe she has an appetite but there is a physiological reason for her not swallowing foods? 

It is very hard to assertain what the cause may be and if she has limited communication skills you will have to do all the detective work yourself. 

All I can really suggest is to keep a diary of her behaviour. See if some days or better or worse than others, see if there is a pattern. Maybe try using social stories to explain that she needs to eat and use something she loves as a tool to encourage her. Is there a possibility we may be depressed or anxious? Maybe go to your GP and ask for a specialist learning disabilities nurse?

You probabaly do all this anyway but it’s hard for me to help as I don’t know anything about your daughter, her life or what you’ve tried to help her.