Advice needed please

Hi, my daughter is 14 and had her assessment in February with Paeds. He said she had all traits of ASD apart from she has good eye to eye contact and advance in using hands when talking. He said she needed to see psychologist before a formal diagnosis could be given and it’s a 6 month waiting list, but referred me to this website for help in meantime. 

I’d always had my worries as she’s grown up, but when she hit puberty 2 years ago it all came to the surface, I presume due to hormonal changes.

so far we seem to be handling things well, her eating atm though is driving me mad and I could do with some advice if possible please?

she’s always been a picky eater and preferred beige foods like chicken nuggets no chips etc… however as she’s gotten older and teenager she hardly likes anything which is causing a lot of problems at home. One min she likes something like mozzarella cheese toastie and 2 days later or a week later she’s gone off of it, I literally cannot keep up.

anyway it all came to a head tonight when I tried speaking to her about it as didn’t know what to make her for dinner and  she got abit mean and said she likes food in restaurants because a chef cooks it and I can’t cook anything nice and clearly don’t know how to use an oven…when I told her I was upset by wht she’d said she just said “sometimes the truth hurts mum”.

I have absolutely no idea what to do regarding her eating as even he doesn’t know what she wants to eat at home, the worst part is I’m not a bad cook at all, but I’m definitely not a trained chef and her will be. 

The way she s;oke to me wasn’t acceptable whatsoever and I tried to talk to her to explain why, but he said she didn’t understand what she had done so wrong and was just being truthful…how do I get her to understand??? 

she hasn’t been formally diagnosed yet and sometimes I feel so out of my depth and never know whether we’re actually handling things right or not? 

  • There is a lot to learn. Don’t worry about her not being diagnosed yet. Just assume she is. I mean, look at what she said. She’s built differently. That’s very telling. 
    Anyway, I get what you’re asking. It is very hard to distinguish these behaviours and cheek when you don’t know if your child is Autistic. But, you DO think she might be, and it’s safe to assume she is. In that case, although how exceptionally difficult and upsetting it is, I think you can put 90% down to ASD. 
    Hormones are bad enough without knowing you aren’t like other people, and you don’t know why, or what to do about it. Look at it this way, can your daughter be lovely, caring and sweet and funny. I’m sure you bought her up to be a kind caring individual. If you see this child, the ASD behaviours are to blame for most of the tough parts. 
    It is a process. 
    My daughter is 18 now. Periodically she can be extremely frustrating, and  sometimes I want to cry from how she’s spoken to me. I know it’s when she’s having a tough time due to all her multiple issues, and not being able to deal with it effectively. I know it’s not her. And she always apologises once she’s been made aware of how I felt. 

    Regarding food, just keep ploughing through. You say you have to make her a separate meal, you don’t have to, you choose too. She needs to know that it’s less hassle if you can cook one meal for all, and if she wants a special diet all of the time, she will need to help or start making it herself. I know you won’t do this, you want her to eat. However, I’ve been there. Children adapt. She will never go hungry. There are multiple foods within a chicken dinner. She can eat those things separately can’t she. So if you cooked a meal with photos items for everyone, just dish her up the potatoes. 
    I refused to partake in separate meals any longer.  It was very hard changing it up, but I did manage to do it. We all had the same. Some food got left. Some got eaten. 
    I will say that this didn’t work for a friend of mine with an autistic child. She refused to ‘let them go hungry’, and now, into teens, she is providing ‘special foods’ and the child is 100% more pickier at meal times. They are also continuing to act up at meal times if they didn’t get what they want. 

    Anyway, I’m rambling now. Someone might have better advice, and it’s wise to remember, what works for one child won’t work for another. Just keep trying, changing and looking for a solution that works for your daughter and you. You might need some outside help, but things will improve as you learn together. 

  • Hi, I am also in the process of being diagnosed with autism and I also struggle with food and digestion. I think issues around food are quite common. I also have a tendency of wanting to eat the same food/foods over and over again (plus other issues). Does she get a reasonable balance of nutrients with her diet? That could be a concern in the long term- for me personally, my diet often got more and more restricted over time if I didn't push myself. Expanding your diet can take commitment and motivation though so ideally she would have to have some intrinsic motivation to do so, otherwise it might be difficult. It sounds like sensory issues play a big role in her food choices- there are actually quite a lot of resources about ARFID type eating issues (I actually have a book on this as well: "The picky Eater's recovery book by Jennifer J. Thomas, Kendra R. Becker and Kamryn T. Eddy- this is for adults though so might be worth looking at resources for younger individuals too- maybe you can also find some resources on how parents can best help in a situation like this). I used tools from exposure therapy to expand my diet (and so have some of my autistic friends).  

    It doesn't sound fair how she is treating you regarding the food/cooking. Have you tried to explain in words how this makes you feel and why it is not kind? Can you maybe get her involved in the cooking? That could be positive and would also get her exposed to new foods (looking at, touching and smelling a new food are a good way to get going before tasting it). 

  • It’s just not knowing how to handle it all really, obviously she’s not formally diagnosed yet. We never know what’s causing the issues thrown at us at that time, potential autism or teenage brattiness. SHe says all the time that we don’t understand how her brain works and she’s built differently ( her words not mine ). 
    if she is diagnosed autistic, what’s acceptable behaviour and what’s not as far as autism goes???? What situations should she be reprimanded for and what not because she can’t help it??? I’m just so scared of getting it all wrong I think.
    I mean, she literally likes no food we like so I HAVE to make her a separate meal everyday, apart from chicken dinner which is her fav, we all eat that, that’s my safe day, everyone’s happy unless I’ve accidentally not mashed the mash enough and Then she isn’t happy. 

  • Thanks Martin, we have tried this a few times and she ends up getting upset and accuses us of bullying her. She just doesn’t seem to grasp that what she is saying is hurtful, what she says to me is honesty, but what we say to her is just apparently dead mean and bullying. It’s like she can’t link the two together and it doesn’t matter how many times you try and explain it to her, she just doesn’t understand. I’m hoping it’s an age thing and as she matures, she’ll start to see what we’re trying to teach her. It was picked up in her assessment that she doesn’t understand relationships and social situations and lacks empathy, school are meant to be giving her relationship lessons, but not heard when they’ll be starting yet. She sounds really mean on this message but she’s actually a lovely girl with a loving personality, but she does have this side to her atm which I’m hoping disappears as puberty does. 

  • Let’s not forget the fact she’s a teen, so she’s also going to push your buttons and be cheeky. Take it with a pinch of salt, and reprimand her where necessary.

    I can empathise. My daughter used to eat everything, and one day, she stopped eating this….then that…she wouldn’t eat toast for years. One day she stayed at a friends, and had toast for breakfast! And I’m like what? You eat it there and not here? And she says because it was that or nothing else….! I used to make the same meal for us all, and change bits and pieces to suit her. Had to be on eggshells all the time, in case something touches something else, or I dished up something she didn’t eat. Then food would get pushed around the plate, or gagged on, or left. This was all years before I knew she was Autistic. In the end, I just made one meal, and if she didn’t eat it, tough. She didn’t get dessert either if she didnt eat the meal. I was quite strict. She never went hungry, she would. Get a bit of fruit or a sandwich etc…

    I mean, I only got my own diagnosis about 5 weeks ago. It took so much effort for me to plan and make family meals for the same time each evening. The extra stress I had with my daughter didn’t help. Actually my son also was difficult too. Thank god their both old enough to do their own meals now. Things do get better!

  • While food sensitivities are quite common in autistic people the amount of abuse your daughter is giving you is not. I would not consider grading the quality of meals as honesty, it is just abuse and ingratitude. I am autistic and have an autistic daughter, who has always been picky with food. She sometimes has food issues that arise while she is eating, and sometimes cannot finish meals; but when this occurs, she apologises and says that it isn't the food, it is her. Although autistics cannot always pick up on social cues, most autistics, if it is pointed out plainly that we have hurt someone's feelings, will apologise and try to modify our behaviour. Personally, I would tell her to stop grading meals as it is hurtful and if she will not, start grading things that she does, such as homework etc. At the very least she will be able to appreciate being on the receiving end of unwarranted criticism.

  • Thank you for replying catlover, it’s appreciated more than you know. 

    I’ve tried asking wht she prefers and she just says dunno, I’ve tried just making and it results in a meltdown and anger where I get accused of starving her. 
    beige no bland is great in theory but she won’t eat pasta, rice, potatoes ( only mashed and only if I’ve managed to get every single lump out )  like you say she’ll eat something shelikes til she’s fed up of it and then won’t have it again and then tells me it’s my fault for giving her it repeatedly. She refuses majority of the time to help me cook, Im a housewife and she just throws that at me and says she shouldn’t need to help as that’s my job and I don’t work to do stuff like that, she has school whilst I’m at home all day…just feel so low and lost today….it’s a constant battle, I dread food shopping and cooking evening meals now.

    I know she wasn’t being mean on purpose, but it’s jut so hard to be constantly put down all the time, she’ll literally sit at every meal and grade my efforts out of 1-10 and go into great detail about what I’ve done wrong on that meal. In her head I think she’s trying to be helpful for next time,  but after nearly 2 years it’s wearing thin. But min you say anything to her about something she doesn’t like you saying, she accuses you of bullying her. I can’t win and it’s tiring me out everyday. 

  • Regarding the food, ask what she prefers, or just make whatever you like, and see if she’ll try it. Or simply just keep it beige and bland! Sometimes we like to eat the same things over and until until we don’t. I can imagine it is frustrating for you if you are the main cook. Can she help in the kitchen? Maybe she’ll eat something she has prepared? Just don’t force the issue. She will eat when she wants to, and won’t go hungry.

    Try not to be hard in her, she wasn’t being mean. She spoke the truth-as far as she is concerned. Autists tend to tell it like it is. This will improve as she gets older, and learns what’s not appropriate etc. And at least you know why she is so brutally honest, so that should ease your mind in knowing that is isn’t down to bad behaviour.