Autism, Cahms, anywhere else?

Autism, Cahms, anywhere else?

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Bullybutt

Original Poster:

184 posts

43 months

Thursday 20th April 2023
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As per the title….my 12 year old has moderate autism, now at secondary school and has high anxiety and a decent amount of anger that is a struggle to control. At school she can just about manage, although often manifests as being sick or anxiety. At home she throws, yells, swears, punches, kicks etc. I’m happy that she can control herself mostly at school and will let loose at home as she does need to decompress and let it all out i8n a safe place. My issue is that she’s been having therapy through Relate and they say they can’t do anything else for her and to pursue help through a gp referral to cahms. We all know that’s a two year waiting list and isn’t exactly the pinnacle of decent help when you are top of the queue. Does anyone have experience of this, where to go to next, what to try etc?

Bullybutt

Original Poster:

184 posts

43 months

Friday 21st April 2023
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Thankyou for the replies. She has been diagnosed for two years, although I’ve known for a lot longer. GP isn’t able to give any further help unless I want to push for medication (I absolutely don’t). She’s in Year 7 and with moving school, I fully expected things to be worse. The first term was awful, she’s more settled now apart from the anxiety. So the anxiety causes the physical nausea, feeling dizzy etc and later on, massive rage. It’s just how I can help her to vent and then calm down. I’ve tried a few places today who have basically said to stick with it and she will grow out of it….I know it changes with age but having a chair lobbed at your head makes you want it sooner!
She only really feels safe at home, but because she behaves at school, they don’t care about helping or finding help. I’m thanking of going for some help in the private sector but it’s a minefield. Children’s practitioners are scant at best. It shouldn’t be so hard to find help for your child.

Bullybutt

Original Poster:

184 posts

43 months

Saturday 22nd April 2023
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Chromegrill…

She is definitely pro at masking when at school. Not so much when generally out, shopping etc. I do limit those activities as much as possible during school term time as she is just totally overloaded and needs the weekends to decompress. She has an ECHP but it’s not much use. It allows her to leave the classroom with a pass at any time she wishes, otherwise there isn’t a lot of value. Education wise she is fine and, as you say, high functioning. As she walks out of school she always rings me and starts a barrage of swearing, shouting etc….the beginning of meltdown after coping so long. It breaks me each day as I know how much she struggles to keep a lid on it all, she should be able to be herself. Yet I know she will have to manage in later life in this way and now is a good time to start.

We do have a bulldog as a pet, she’s excellent with my daughter and is a real comfort at times. She would love a cat as well but my eldest is highly allergic. As for the OC, I honestly hadn’t heard of it in this way before. She definitely needs coping strategies in this. I’m unsure how to go about finding someone that can do this. Any ideas?

Bullybutt

Original Poster:

184 posts

43 months

Sunday 23rd April 2023
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So…. We have tried dance, kickboxing, street dance and a couple of other classes. Basically she wants to do her own thing and not really learn from a teacher, she has her own way of doing things and it isn’t always the same as the rest! She also just wants to be at home really. So we’ve just a got a swingball for the garden that she smacks the bejesus out of, plus a huge keyboard as she showed a lot of love for the one when at the in-laws. When I can get her to use these, it helps refocus and calm down. Shame they can’t be used at school, although she would probably just lamp someone with them…

ECHP is reviewed each term, although I’m no longer part of the process. At junior school I was invited in for it or discussed over the phone, now I get an email with it on and that’s it. I’m going to be reading the site you sent me and making some much more thorough notes to discuss with the senco . Letting her leave lessons when overwhelmed is good, but she’s too scared of authority/teachers to use it . The website you sent looks excellent, I appreciate the link. Google hits just take you to anecdotes and it’s not particularly relevant. Private OT this week as well.

There’s so many issues with the frustration of friendships, emotions, hormones and just working out how you actually feel..trying to help her is hard. Trying to help her see that friends are important but being taken for a tt by them is not right and to be alone and content can be good. She’s a good lass to have on your side, she’s loyal and will always stand up for her friends. Then they bog off without her or ignore her and she doesn’t understand why. The explanation that girls are bhes and make friends with boys doesn’t help…I’m ranting now, my heart breaks for her sometimes. She doesn’t really understand the world she is forced into. I get her rage and why she throws and punches.

NorthD, brown noise…I’m off to YouTube to investigate! Thankyou.

Gillette, wow. Some folk shouldn’t have kids, I guess. I’m obviously on the spectrum and had a lot of therapy before having kids as I was determined to not be cold and ignorant. I’m not good at hugs, noise, people always on and around me etc. I’ve never had a day go by where I don’t hug my kids, tell them how I love them and try my absolute best for them in whatever way they need. It’s good that your friend has other people around to help his kids sometimes. There’s no perfect parent, but you should at least try! From what I’ve seen, it’s common for the ASD to go for the first person that shows them attention.

Bullybutt

Original Poster:

184 posts

43 months

Wednesday 26th April 2023
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Sparky, those places look good, Thankyou. Lots of reading going on. I’d take her out of school but she’s a hermit at the best of times and she won’t sit with me and do any work at all, lockdown proved that and she won’t even attempt homework. Thankfully we haven’t got to knives and all that, it sounds like you had an incredibly tough time. School just isn’t the great time that lots of folks think it should be.
I’m looking into a punchbag that should be able to fix up in the garage rafters and give some kind of outlet. Punching pillows apparently isn’t as gratifying as smacking the crap out of something solid, so she says. Relate stopped seeing her as the counsellor said she was at the end of her expertise for anger in children. Although the anxiety and hermitude are still there and could have done with more help. Three sessions, each for 20 minutes…not quite what they advertised .

I’m very grateful to everyone who has replied and the great places to go read up and get some help/understanding.

Bullybutt

Original Poster:

184 posts

43 months

Wednesday 26th April 2023
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Tonyvid, I’m in Lincolnshire. We’ve tried online therapy and stuff but she just doesn’t seem to engage.

Madcow…good luck to you, having a diagnosis helps with exam times and how they can sit gcse etc. The anxiety is a total nightmare, she loses all coping mechanisms when in the throes.

Bullybutt

Original Poster:

184 posts

43 months

Tuesday 2nd May 2023
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We’ve just had five days of school with a bug. It seems to have coincided with some little turd being horrid to my daughter. She’s really got under her skin and she’s being pushed around. Sitting at a table of four kids and eating lunch, only to be forced to move to a table on her own so another girl could sit down in her place. Nobody from the group went with her and she told me she was sitting there just listening to them laugh and joke and then walk off , leaving her behind without even a glance. My lass spends most of the days outside classes or in the bathroom texting me, crying or holding in the tears. My heart breaks. I spent all last night awake trying to figure out how to help her, what i can do. There will always be girls that behave like this and gain enjoyment from excluding and pushing around. She wants to stand up to her but is scared, the retaliation will be rumours spread about her and boys. They know she finds the idea repulsive and so she will do whatever to avoid this.
I’ve rung school, only for noone to ring back. Standard. Although I’m not sure what they can do to help really. I’m just trying to not go wring the little witch’s neck.


Orbit123, I feel for your daughter and yourself. The fact you recognise it and can help is fab. The next school will need a good handover but it’s a good time to start afresh with new ideas from the senco.

J.R.B, food. Yep. Beige, bland, tomato sauce with everything, texture. Usually it’s a case of sensory processing disorder and the differences in food stuffs is too much for them. Hence why a bland diet of stuff that is always the same is what they go for, like chicken nuggets, pizza etc. If you get a diagnosis then you can go for food clinic help, although it might make them hyper aware of whatever they touch. Does she eat ok if she goes to a friend’s house or a grandparent? Is there a meal she will always eat without fail?


Bullybutt

Original Poster:

184 posts

43 months

Wednesday 19th June
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We aren’t doing any better. We are in the EBSA pathway, three sessions in school of two hours each. If she attends one of them I’ve done well. She’s having some therapy that works alongside the ebsa that’s done big all so far to help. She hardly leaves the house, is putting on weight, barely talks to anyone besides me or her cat, personal hygiene is always a huge task and she hates being told to go shower or that I’ve run a bath. I love her dearly, but I’m tired beyond what I ever thought was possible. Two hours sleep per night is about all I manage if she finally clocks off for a while. She won’t do work sent home, she won’t do work if she ever goes in to school. The future seems so very bleak.

Bullybutt

Original Poster:

184 posts

43 months

Thursday 20th June
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Solo2 we do get some DLA but it just about covers her therapy at the moment. I still try everyday to make her shower, dress and leave the house but it’s a fight that takes hours and hours.

Bullybutt

Original Poster:

184 posts

43 months

Yesterday (09:59)
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Fridaypassion, definitely because it’s a new place, sensory overload and her safe people aren’t there with her. We have this if we go on holiday, even if we go to a familiar place. She did utterly amazing to stay and push through that. Folk don’t realise how draining it is for the individual to cope with the emotions and being exhausted afterwards is normal and justified. The constant heightened state and emergency the brain and body feels can’t easily be described.
I always hope that once they’ve done the hard bit once they will find it easier next time but it’s not always the case. We are in a three session week, two hours at a time in school and she still is utterly panic stricken when I try and get her in. I’m looking at if I can get help with a tutor when at home but the info to wade through and where to get help is swamping me. I’d say roll on the summer holidays as I can switch that part of me off for a few weeks, but that’s not the attitude and I have to continue the fight and help. Swimming in treacle would be easier.