my daughter is currently on the last part of her ASD diagnosis...
But her anxiety is taking over her life, I am hoping someone might be able to point me in the right direction for help.
most recently she was so worried about going to school her whole body came out in a rash and she was scratching at her skin like mad, I took her to the drs who said this was caused from her anxiety, but given her age there is nothing they can do to help, but if I do find something she would be more than happy to help me.
She pulls her hair out on a regular basis, more so when shes worried about something
She hardly sleeps, and I have to stay with her until she falls asleep (this can be up to 3 hours!) and then I have to sleep with her, she is worried someone will come into her room at night, we have tried everything possible to help this and reassure her but nothing seems to work.
She has got fantastic at support at school with incredible teachers.
Its always a struggle to get her into school, and sometimes I physically cannot get her in.
Her teacher has to meet her at the classroom door otherwise she will not go in.
she doesn't go out at school, she is worried about the weather. her teachers do encourage her to go out but she normally will sit in, in the office on her own!
She has lego therapy at school once a week, which does help.
She was having ELSA, but because she wasn't talking, they wasn't wiling to continue.
Can anyone please help me with anything that could help? could play therapy help?
Thanks for reading
Ahh, I see, all roads lead to CAMHS!
Poor thing, she sounds like she's very frightened - you can't fake a rash, after all!
Sounds like the school really are trying their best - have they involved any outside specialists? I know you said an EP appointment is coming up. The problem is that it is difficult to find the right therapy if the root causes of the anxiety (be they social, sensory, or something else altogether) aren't identified. It's like trying to fight invisible wasps, isn't it? (Strange analogy, but you get what I mean!).
Anyway, when schools have tried their best they should involve outside specialists to try and identify what the issues could be. Hopefully the EP will be of help but if not maybe call a meeting afterwards and ask what other specialists could be called in?
Also, just as an aside: you/the school could apply for an EHCP even without a diagnosis. If the school agrees with you that she has SEN, and they have evidence of those needs, then a diagnosis is not required to ask for an assessment. I know that some parents/schools want to wait until they get a diagnosis before they ask for an assessment but you never know until you ask and it's worth keeping in mind if CAMHS have a really long waiting list.
One last thing - maybe your Local Offer website might give you some inspiration on possible therapies (just google the name of your county and Local Offer, and the government website should come up. It lists all the SEN support available in your area).
It is! and CAMHS are so over worked and understaffed the waiting time is unbelievably long. Keeping optimistic though... The end is near!
They haven't involved any outside specialists... I will ask about this next week! Thankyou - I hadn't had thought that was even an option.
I really appreciate the time you've taken to reply to me! You've helped a lot and given me a lot of bits to look into!
(Yeah, the outside specialist thing is mentioned in the SEN Code of Practice, which is a very large document, but thankfully someone made a mini guide that you can find here: www.sendgateway.org.uk/resources.the-send-code-of-practice-0-to-25-years-nasen-miniguide.html. You'll find it on page 11 of the PDF link: " Where a child continues to make little or no progress, despite well-founded support that is matched to the child’s area of need, the school should consider involving specialists, including those from outside agencies.")
Have you tried deciphering for her? Like if she thinks there is or worried about someone wanting to attack her or come into the room, maybe you could check for news updates about burglars? That’s what I used to go through when I was younger and still do. Then, perhaps you could try to make her room safer, burglary free. Just a suggestion. In the terms of weather maybe there could be a hurricane or a storm elsewhere. There are some movies that could help maybe. Obviously child friendly ones. Like, Annie. Or something that she could relate to. It’s not just about girls being in control and manipulating. If you’re saying that everything would be negative about girls with autism, then your 3 hours of no sleep would end up being 5 hours instead. Some kids both girls and boys with autism like being on their own like if they decide not to play outside it doesn’t mean they don’t want to socialise. It took me a few years to figure that out about myself. I never knew I had autism until I was 32 years old. While growing up, I was told that all the time. And if she thinks she is a dolphin or a whale just search on the news that they’re ok. There are moments when she will feel her worse but it always is when they are kids. I don’t mean it in a bad way. Just that we cannot keep saying that they are behaving negatively all the time then they will use that as an example growing up. Some boys with autism can also be controlling and manipulating too but if she’s going to grow up in a world where we tell them they are everything that’s negative then she will keep that in mind that she’s not a good person or something else like being “too over sensitive”. If she has adhd, she could something else that helps her from that like if Lego works, then she’d probably want to play with Lego everyday or if she like browsing through books like Matilda for example. I think that’s all.
Sorry if it’s not the best suggestions/opinions.
I would say that plastic and front have made some great suggestions,
Have you thought about the use of a sensory item to replace the hair pulling and scratching? That way she can still regulate her emotions without hurting herself,
The lack of sleep is probably making the anxiety worse as well,
My daughter is 8 and still awaiting assessment, she also has massive sleep problems she sleeps 3-5 hours a night and not all at once and most of the time now will only sleep with me, this has been going on since she was 3! You may have success with the clock that has been suggested but is it that she can't sleep? Or that she won't sleep? As they are two separate problems,
My daughter also has to be met at the classroom door and hates being left, her teachers have to hold her to stop her from running off but within 10 minutes she settles and sticks to her rigid idea of how she must act In school so her teachers see a perfectly behaved child and she bottles it up and blows up after school this then leads to more anxiety.
Play therapy may help, we have started using a worry book and an emotions book this gives her a place to show what is worrying her so we can work out why and the other book allows her to record things that are making her feel bad or good
I actually forgot about a sensory item! Thankyou. She used to have a leopard teddy that went on her wrist and she would fiddle with that, but the amount of times she would lose it or leave it somewhere But I will get her another one those as that could help.
Lack of sleep definitely does have an impact on anxiety and then anxiety causes lack of sleep, it’s a vicious circle.
Im not sure if it’s a case that she can’t sleep or won’t sleep... I’d say a mixture between the 2.. she will tell me she can’t sleep and sleep is a waste of time and be up for hours and up constantly throughout the night but there has been (rare) occasions where she’s so tired she’s slept all night - so she can do it.
We have a worry book, worry monster, worry dolls, but she is such a secret squirrel she keeps it bottled up.
I hope you get a diagnosis and sleep soon!
thankyou for your reply
I guess the 3 to 5 hours of no sleep is not great, but it looks like you're doing the best you can to keep your daughter safe and happy. But, I do hope you're all well and safe from the storm, that's in the news today. Sorry about everything. It's just that I experienced everything your daughter did as a child, I'm more non-verbal. But that she's only 8 years that it'll all be too much for her to take in everything all in one.
Sometimes, it'll be forever to get to sleep, she'll open up one day, as in she'll talk about it. I never have success with the clock because I've to keep on deciphering, like when I just see a Ford car wanting to hit me before going to bed then the next day a teen dies from a car accident same incident in my mind and I read, which is a coincidence, but when I read the news at the age of 8, it gave me a relief because whatever were stuck in my mind, I got to share that out.
I guess with hair pulling and scratching, only a therapist/psychologist could help about that. I wasn't criticising about your daughter, it's just that I was your daughter that age, but after several concussions since I was 5 or 6 years old, it's different for me. I didn't mean to make you upset about it.
But I know, this place isn't for me.
youve not upset or offended me :)
I just wasn’t sure what your first reply fully meant.
But Thankyou for your message :)