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
It sounds like she has a lot of control points where she is asserting her (typical) overblown needs for control to overcome her anxiety about stress & chaos. Young girls can be particularly skillfull in the art of control & manipulation.
Autistic kids need stability and predictability because 'life' is chaotic and the constant change causes them stress.
It does appear though as if your daughter is totally controlling you and manipulating your life - but even that is not really giving her what she wants - so she's likely to add more random control points and rituals until she makes herself look like an OCD case - and your life a misery.
You need to take control and carefully reduce all these pinch points - try the bedtime one first.
This will be easiest on the weekend - take her to places she likes early in the morning and later in the afternoon - wear her out - get her to play games with you until she's absolutely knackered.
Tell her when bedtime is going to be so she has time to wind down - and then a quick cookie & small drink and then off to bed. Have a CD player in the bedroom playing gentle music very quietly (so there's always some sounds going on and you don't accidentally make a tiny noise that wakes her up) and give her lots of comics & cudldly toys in bed with her so there's always something to entertain her if she wakes up.
Tell her that mummy is really tired too and you need your bed.
If you present it all as logic and reasonable, she will probably accept it - and then see how far you can push it over the following weeks.
Your success will hinge on your ability to be firm & constant and to maybe accept a few tantrums & tears as she tries to re-assert her authority.
Be very careful about remaining calm, cheerful, unemotional and give her the understanding that this is just the way everyone else does it.
If you get a pattern of success, reward her (something small or she's get demanding) but try not to get frustrated and don't punish her if there are lapses.
Another way to break the cycle is to change the location - like going to stay with relatives where the subtle change in social rules means she's a bit off-balance so has no built in rules to follow - then assert the new Junta while there - she'll be less able to take control with a different set of people.
It's a battle of wills - and you must win for your own sanity.
Thankyou so much for your reply!
That all makes sense! I have tried something similar at bedtime before but she ended up having huge meltdowns, even attempting to jump out her bedroom window (it is locked and she has no idea where the key is)
but I will try again and start with small, subtle changes and hope they work. Thankyou
Do you think the same applies with her worrying about the weather? that she might not necessarily be scared of it but its her way of controlling it?
NAS51447 said:Do you think the same applies with her worrying about the weather? that she might not necessarily be scared of it but its her way of controlling it?
Hiya! Hope you don't mind me chiming in here. :)
Something useful to keep in mind with specific fears is that sometimes what the child can appear to be afraid of is actually only the precipitating cause of the real issue. So, for example, if I knew that other children in the playground were more likely to congregate in a specific area of the playground during a particular kind of weather and this scared me because of the changing social demands, or if other children were more likely to play a game during sunny or rainy weather and that game frightened me, I might not go out if I see that the weather is going to take a specific turn. Or, as a completely different example, if I had an item of clothing that I needed to wear during a particular type of weather and this gave me a horrible sensory experience, I might demonstrate fear of the weather rather than fear of the item of clothing itself.
Does that make any sense? Sorry if it doesn't! This might or might not relate to anything that your daughter is going through right now, but when dealing with anxieties and phobias sometimes a little deductive thinking can be required.
Is she capable of identifying and communicating in any way about the specific issues at school that are causing her anxiety?
Thankyou so much! I never thought of it that way, which makes so much more sense and I feel relates a lot to her, that when it’s windy a lot of the children probably wouldn’t play the same games that they would do normally - hence her wanting to stay in.
She doesn’t ever give a specific reason about school, just that she doesn’t like it and it can all be too much.
Her teachers have allowed everything possible for her to have in the classroom to help her feel more relaxed - which has helped a lot and at home after school she has her time alone to chill and relax.
But the anxiety just doesn’t seem to be easing up
Does she have an EHCP? Or is this something you've spoken about with the school? You know, perhaps to gain access to some more specialist support or a specialist adviser who could help identify those trigger points?
She hasn’t yet no, because they are waiting for her diagnosis from CAMHS.
she has got the EP booked soon, so hopefully we can get some help from there.
Other than that, we are stuck on where or who to turn to for help
I'm afraid I don't know much about the pathways to diagnosis through CAMHS as opposed to, say, approaching your GP to request a diagnosis (I assume the GP just feeds into CAMHS and that's how it works?)
Has she been formally identified by the school as having SEN (did you get a letter confirming SEN from the school, do you have termly SEN meetings with the teachers, etc.)?
Yes it all feeds into CAMHS, I went to the drs with her earlier this week due to a rash appearing all over her body caused from anxiety, but she said there is nothing to help anxiety at her age. Only once she has been diagnosed CAMHS will be able to offer more support.
We are hopefully close to her being diagnosed, we are on the last part of the pathway.
Yes she is under SEN at school and lots & lots of meetings!
the school are really helpful, I just wondered if there was any other therapies or similar that could help her at school.
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.")