Is there any help?

[letsfaceitwhoisnt]

DD (8) has 'high functioning' ASD. She masks all day in school and is achieving academically. She is sweet kind and loving little girl and I know how hard things are for her she is really struggling.

We get DLA which is used to pay for CBT with a therapist that specialises in regulation.

But nothing seems to help with the meltdowns.

We're currently having the most violent meltdowns multiple times a day. She's punching, kicking, biting. I am covered in bruises and scratches and last night she kicked me so hard in the throat I genuinely thought she'd done something serious damage.

We are trying everything and no the only thing that calms her is us staying calm and telling her she's safe and loved etc.

She is waking multiple times a night and every morning at 4am she is up for the day and the meltdown starts again. She's under the sleep clinic and takes melatonin be for bed.

School are great but there are no problems there so not an awful lot they can do other than movement breaks etc. no EHCP as have been told we won't get one.

What can I do to help my child and this awful situation we are all in. Me and DH are exhausted DD5 is living in fear of being attacked.

There just seems to be no help? The only service I've been offered is a parenting class which is on every Monday 10-12 whilst I'm in work?

Has anyone had anything life changing that has helped I really feel at my wits end at the moment. I'm self employed and work is also extremely full on I'm doing drop off and pick ups and then working all evening after the kids are asleep. Something needs to change as we're either working or being screamed at.

Sorry this is all a bit garbled but I'm just so exhausted this morning and fed up of living in a constant state of high alert.

School are great but there are no problems there so not an awful lot they can do other than movement breaks etc. no EHCP as have been told we won't get one.

Sadly, you have been misinformed. What you are experiencing is known as the coke bottle effect. It signifies there are unmet needs at school. If school was easier, home life would improve too. DD isn’t really fine at school. There will be signs. The school isn’t seeing them or recognising them for what they are. They can and should be providing more support. You should request an EHCNA yourself. You may have to appeal, but it is possible to get an EHCP for those who mask.

Some people find the books The Explosive Child and the Out of Sync Child helpful. Others find PDA strategies &/or non-violent resistance resources useful.

Has DD had an OT assessment?

It's not unusual for children, they have used a lot of mental energy containing themselves in school and coming home they don't have to. My daughter would scream and cry for at least 2 hours, although she didn't become physical.

We too have the issue of diagnosis and then no further support. Most Children's mental health teams (CMHT) now provide specialist support for children with autism. Make a referral for your daughter and ask your GP to also make a referral. They are multidisciplinary teams, and include psychiatrist who can prescribe meds in addition to melatonin. Clinical psychologist and occupational therapists, who will be able to support your daughter and you regarding emotional regulation and her sensitivities/ triggers.
Both my children are seen by the psychiatrist and also the clinical psychologist. Originally we paid privately for clinical psychologist for our son, and privately for counselling for my daughter.

Let them know in the referral she is harming herself and you.

The clinical psychologist works with us as a family for my son, where as my daughter sees a psychologist on her own.

If you get declined by the CMHT team because she doesn't (we did 3 times) put in a complaint to PALS.

I understand how wearing this is. Especially trying to get the right support for your daughter, whilst being exhausted yourself. Good luck!

@StrivingForSleep so sorry for delay in responding to this and thanks for replying.

The issue I have is I have no idea what needs to change. I've been in countless times and the things they recommend are movement breaks, fidget toys (she won't engage with a lot of this as she feels it makes her look weird).

The teacher has been really good and has enrolled her in with a therapy dog who comes bi-weekly. She also has started working with a counsellor to discuss emotions and the teacher does social stories with a couple of the other girls in the class who struggle with friendships. None of this is helping her home life though.

I just have no idea what will help her? I know she feels immense pressure to appear to be 'good' in school, and not appear to be different. She is also very concerned about making any mistakes. I feel like the masking is causing a huge amount of the fall out. I've asked the therapist she sees to work on unmasking with her but I don't get any feedback from the therapist about how these sessions are going due to confidentiality.

Thank you so much for this @PeanutButterCrumpet. I have spoken to CAHMS before when I felt we were at crisis point before diagnosis.

I had explained we were on the waiting list for diagnosis and she basically told me not to bother and that the diagnosis wouldn't provide any additional help.

We ended up going privately as I felt like I needed a better understanding and the waiting list was 5 years.

I've not had anyone mention a clinical psychologist before for autism so I will definitely follow up with this route. Thanks so much.

That is why it is important to request an EHCNA. Advice and information gathered as part of a needs assessments will help everyone understand DD’s needs better and the support she requires. This can include advice and information from ed psych, OT (including sensory OT), SALT, clinical psychologist…

If DD needs movement breaks but is reluctant to take them, the school can do a form of them by stealth. Not as good as a proper movement break but better than nothing. Do they do the daily mile (this can be done at a time DD clearly needs a movement break)? Do they use DD to hand out/collect in books/equipment/worksheets or use her to deliver messages to elsewhere in the school (even if the 'messages' wouldn't actually be sent unless DD needs a break)? Do they have anyone who can support Zones of Regulation work? Do they have a nurture group? Do they have a lunchtime club for those struggling with friendships?

Yes, agree. You need assessments to help identify needs and suggest provision to meet those needs.

I hope you find a clinical psychologist locally who can help.
Agree with other posters regards OT, you can check regarding paediatric OT service in your area.
They will be able to write you a letter/ report which you can submit with your request for an EHC needs assessment. You will need these to evidence your reasons for assessment.
https://www.ipsea.org.uk are really useful. As SENAR across every LA seem to be saying no at every stage.

Unfortunately be prepared to challenge. See if there is a local parent Facebook group and local parents group run by an autism charity they will be invaluable support. Your LA/ NHS should be commissioning autism specific services so check on the internet. This service usually includes group/ carers advice and workshops sessions often on line to offer guidance.

Regarding childrens mental health team, don't give up regarding referral for assessment regarding support from clinical psychologist, there may be a long waiting list. In addition to autism, anxiety and social anxiety, is a huge issue with many ASD children and it can present very much like your daughter and your family is experiencing at school and at home.

Sorry another long post.

They will be able to write you a letter/ report which you can submit with your request for an EHC needs assessment. You will need these to evidence your reasons for assessment.

Despite what some LAs claim, you do not need evidence from OT, SALT, ed psych, clinical psychologist, paed [insert any other specific professional] before requesting an EHCNA. The legal threshold for an EHCNA is relatively low. You only have to evidence the child a) has or may have SEN, and b) may need special educational provision to be made via an EHCP. You can evidence this in different ways; you don’t need specific assessments first. Any other test the LA tries to impose is unlawful. Personally, I wouldn’t be waiting for assessments before requesting an EHCNA.