help please our daughter won't leave her room and shouts at us if we engage with her

Thank you :-) I think being less hard on yourself is key - sometimes I feel like I'm to blame even though that isn't true.    I'm paying for her to get therapy and she is going on meds shortly.  The psychiatrist said she has severe depression and anxiety.  I'm hoping things will pick up for her over time and with patience.  I'm not getting any therapy as I'm paying privately so just have to pay for her for now.  I'm okay, staying as strong as I can and I have a good support network.  

Oh boy. I don't have advice. She needs proper autism informed support. All I can say is her room gives her safety and leaving it is anxiety inducing. I doubt the bathroom episode is manipulative. It just feels like way too much to come out of her room and whatever special interest she might be pursuing on the machine.

Hi,

I'm so sorry you're going through this. She has dropped out of both mainstream school and the special ed school she had a place with eventually. She not has a tutor 2 days a week and would say she's happier. She still is predominantly in her room though. I'm less hard on myself too and that might be the key for you. Are you getting any support or therapy from anywhere. We had to pay for anything like that in the end. Big hugs to you. 

Hi,

I stopped getting notifications so didn't see your post. I hope things are better now? My daughter got her EHCP and into a special school which she also refused after a while. She's just started having a tutor come to us 2 days a week who was a teacher at the school she knows so things have improved and I she's happier but still spends almost all her time in her room. 

Hi,

I stopped getting notifications so didn't see your post. I hope things are better now? My daughter got her EHCP and into a special school which she also refused after a while. She's just started having a tutor come to us 2 days a week who was a teacher at the school she knows so things have improved and I she's happier but still spends almost all her time in her room. 

Hi there, I know this post is old, but I have a daughter who is going through exactly the same thing - you could be writing about her.  She has ASD also.  Does it ever get better for you or any of the other people who replied here?  Sometimes I feel so desperate and sad.  Thanks.

Hi, my son is 12 and was diagnosed in February this year. He has many similar issues to your daughter. He has been helped a lot by the SENCO at his school. Before lockdown they were very accommodating when he needed to leave lessons due to meltdowns. These were getting very common but then he had the diagnosis and they and the CAMHS team could then see that it was his ASD causing this. He’s also on sertraline which he’s been taking for a year for his OCD which was diagnosed a couple of years ago.

From all this I can see that the support of the school SENCO and CAMHS team /psychiatrist has been really useful and a lifeline because there are times when we parents doubt ourselves and our ideas.

Having him on sertraline wasn’t something we wanted at first but it has helped a lot as his OCD seems more under control. Having said that, we don’t know what he would be like now after almost a year of the medication. Taking him off it might lead us back to where we were which was a very upsetting time for him and us - his rituals would take over his day and tire him out. Your GP might be against it on principle but I have to say our GP is generally pretty useless for anything apart from standard GP stuff - he even googled my wife’s symptoms once in front of her.

Food is a huge issue for us too. Not so much where it’s eaten but more the type of thing he’ll eat. Basically all cakes and biscuits, pizza, chicken fingers, bread, baked beans - and that’s about it! We give him vitamin tablets to cover what he obviously doesn’t get from a wider diet.

However, aside from all the issues above.....he is a very special, lovely and loving child, who adores cats and dogs, has a fantastic sense of humour and is kind and gentle. 

Stay positive, but also accept that we all have bad days and times when the going gets really tough. For me, part of the tough stuff has been accepting that sometimes it feels little change is happening. For our kids, it might take a lot longer for some changes to take place and it doesn’t always feel nice to stick to our guns.  In the long term though and with the right support we are making a difference to their lives.

Hi, I just wanted to reach out to say you are not alone.  We are in a very similar position to you, our daughter is 13 and has undiagnosed HF Autism.  We are also in the process of getting an assessment but we have finally found a psychiatrist who my daughter will open up to and not try to mask her symptoms.  She has advised that my daughter is on the Aspergers end of the spectrum, has depression and suspects she has some other personality disorders which we are seeking help for. We have the same things as you, a complete inflexibility to do things, extreme anger, overwhelming anxiety and like your daughter she is incredibly bright.  She researches everything and remembers everything (I mean everything!).  

I wanted to say that you are not a failure, you must be exhausted with it all.  It's really hard to be strong and positive but as our psychiatrist said things will get better, there will always be an element that some of it is just being a tween.

I don't know if it's an option for you and your daughter but have you thought of finding a smaller school with good pastoral care?  My daughter's school have been very good despite the lack of a formal diagnosis, they have done things like giving my daughter a time out card if she gets overwhelmed, she has special arrangements for oral exams and they have also asked her about the children she feels more comfortable with so they can make sure she works with them. It really helps if school is onboard.

Sleeping (or lack of) is our issue, we cannot get her to sleep at all, it was 2:30 this morning before she finally settled, her inflexibility means she isn't prepared to try new things to help her sleep! She has Phenergan to help her sleep but this can make her a bit groggy in the mornings.

Your daughter's eating must be a huge worry for you.  I have insisted my daughter eats her main meals downstairs, she won't eat at the table with us and instead wants to sit with her back to us at the breakfast bar but at least I can check what she eats. My daughter hates anyone looking at her when she eats so this was our compromise! The thing that worked for us is that my daughter hates bugs of any kind and she researched that eating in her room attracts flies and ants.  If it works, I'll take that!

Her psychatrist thinks medication will help with her depression but I am really not keen for her to start anti-depressants so young, our GP is not keen to do this either. To be honest I'm really not sure what to do for the best some days.  Today is a bit more of a positive day, the weekend less so. 

Us mums need a bit of TLC, I am so grateful for forums like this.  They keep me sane!

I could relate to your post. I too have a daughter who is reluctant to come out of her room. My daughter, who is nearly 10 hasn't officially been diagnosed with ASD but school and doctor have highlighted her many autistic types of behaviour. We were in the process of a referral but this is taking forever. She also suffers from high anxiety too and gets very territorial as soon as i enter her room. At times she is aggressive towards both me and her sister as soon as we enter.

I also feel like a failed parent and i work with learners with learning difficulties in a college. Since the lockdown i have worked from home and my children haven't gone to school so her issues have become far worse. She does not like going outside and has become reliant on her television and ipad playing games. One day it took me 1 1/2 to persuade her to go for a walk! 

I have to say that her school did not show much support during the lockdow. The lockdown has had  a detrimental affect on us all but has particularly affected children who have high anxiety. 

My daughter is also very  bright and able when it comes to maths, science and reading  but really struggles with social communication. The room situation is probably to do with the fact that they see it as a safe place to be and it has become their little haven since the coronavirus. My daughter does come out of her room for short periods and i am in the process trying to encourage her to spend more time out of her bedroom. I make sure i knock before i enter and i try to tidy a tiny little area at a time. She too also likes to eat in her bedroom but i am trying to encourage her to eat in the living room, even if its for a few minutes. Her lack of appetite might not just be to do with the medicine, as i know my daughter eats a considerably less than she usually does and she doesn't take any medication. I have been trying to give her the food she likes and a smaller portions. She is rather a fussy eater and rather thin so i do worry about her. Recently, her appetite has improved but that might be due to the fact that everything is starting to return to the new normal! The diet thing is also a control mechanism as well.

I am going to discuss these matters with the SENCO once she returns to school. 

Don't be harsh on yourself, I am sure the situation will improve in the future once routines are established again. 

Take care.

I thought I would check in and ask how everythings going?

I havent seen this facebook group but be careful joining just any facebook groups. Their not the best, I prefer this forum to the Facebook pages. Theres alot of false info and trolls

It may well be that she doesn’t know. Perhaps look into alexithymia. 

just like to reply to you as i have a son with same problems will not leave room and eats and drinks there too. i have moments when he comes down, i find it hard to get him out of house and missed school for over a year. he has left with no exams co,s he would get aggressive and angry when raise voice and pressured into anything out of room. i am still no better off too, over time it has got a little better but i just like to say hang in there and your not alone he has autistic and sensory progressive disorder  

Thank you. I am always trying to talk with her but she just says, 'I don't know'. I will speak with the psychiatrist but I think sertraline is the only drug licensed for children with autism in the UK. Definitely worth looking into though.  

Thank you, I will. 

Thank you so much, I'll take a look at the website and I didn't know there was a helpline. Thank you again. 

I'm so sorry she's not feeling great still. I think an online group would be great. Stay strong. 

Perhaps it might help to have a chat with her? Ask her why she's acting in this way. Explain why she needs to take necessary steps. Ask her what help she needs from you to achieve these goals. This can help rebuild confidence and reduce anxiety.

It would be best to discuss your daughter's appetite with your GP. Alternative medicines may be available and may not have side-effects.

We've faced something similar. It can take a while for the situation to improve and your daughter to return to her happy self. Have patience.

Good luck!

Hello, I would suggest you join the Facebook group Autism Inclusive Meets.

Here is their web site.

https://autisticinclusivemeets.org/

Here is their Facebook group.

https://www.facebook.com/autisticinclusivemeets/

All the best, Graham

Hello NA S66776

I am sorry to hear that you are struggling with your daughter's eating.There is an advice page here on the NAS site about issues around food, that you can find here - https://www.autism.org.uk/about/health/eating.aspx - which offers some advice on how to try and communicate changes in diet to children, underlying environmental, sensory and social factors that might play a role in picky eating, and different strategies to try and control portion sizes and help your child accept a more varied diet. There are also links to other resources from the NHS and books that NAS recommends on the subject. Hopefully there might be something here that will be able to help you.

In addition , you may like to contact our Autism Helpline team who can provide you with information and advice . You can contact the team via telephone on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor. Alternatively, should you prefer to send a message, you can do so via their webform:

https://www.autism.org.uk/services/helplines/main/questions.aspx

I hope you find some of this useful

Best Wishes

Lorraine Mod