To not cope with “newly” autistic 11 year old?

[Blanketsandcandles]

I am at a total loss today.
11 year has old been diagnosed with autism after suffering what has been diagnosed as burnout. I am still digesting this as prior to her burnout symptoms, I had no concerns. Over the last year she has deteriorated; developed auditory sensitivity, separation anxiety, broken sleep, restricted eating, became challenging in school and lost all her friends due to not managing to keep up social demands. She’s now refusing school completely and I’ve had to take a pause from work to care for her full time. This weekend has been spent with her in her room, in the dark, screaming at me when I go in. She can’t tolerate clothes anymore and lives in her cousin’s old rugby top. I wish I was exaggerating when I say I feel I’m fallen into some movie where the child is possessed. There seems to be 0 help apart from CAMHS who aren’t actually doing anything apart from suggesting books I’ve read and also don’t help with the practicalities of day to day life. I can’t stay off work forever and I’m on my own with her (dad hasn’t been in the picture since she was 2) and I most definitely do not have a “village” as I keep reading about. I read all these ND accounts who talk about the strengths that come with parenting a child with SEN but I don’t find any joy at all. Any hope this gets better?

Wow, wished I lived in your area. 3 years on the waiting list and counting for my 11yo DD.

Well that’s just downright negligent - no evidence of ND whatsoever until age 11 but they’re just going to assume she was masking? Was she ‘masking’ at 2? 3? 6? This is crazy.

Everything is being put down to autism now and they’re going to miss some very serious cases in the process

That’s really interesting about Pan and PAANDA. No one has mentioned these to me and my very quick google does make me think that could be part of it.

Are you sure there havent been little differences youve noticed since childhood and it’s all come to a head? Sometimes it’s harder for parents to see as they are also neurodivergent.
And sen parenting absolutely sucks. And there will be days of fear , guilt, resentment and acceptance. Just get her through op. These exaxt symptoms wontve forever.

I know I must admit I was surprised. She has always been a bit shy and “bookish” but never struck me as ND. maybe I just had no reason to think of it and worry I failed her. I had no idea she was masking for so long.

Bollocks. It’s a fully recognised condition in the Nordic countries.

Has your daughter had any illnesses in the last year or two?

I’ve been going over and over her childhood but I honestly can’t think of anything. She’s always been a bit shy and liked her books but I didn’t see that as anything other than her personality. She was an easy baby, talked and walked early, etc. She was always very academic and teachers talked about her being popular and sweet. I had 0 concerns.

She has always been the kid that gets everything- I’ve often wondered if she has a poor immune system as she always got every cold, bug, tonsillitis etc but GP always said if she had an immune system issue she’d end up in hospital every time she got a cold and essentially that I was overreacting.

Please investigate Pandas/pans. Make a GP appointment and print the leaflet from the PANDAS website to bring with you. Outline all the symptoms she has and how they match, and how she was never like this growing up. Try to film a few minutes of her most extreme behaviour to show them.

Goodness it does certainly read as very real, I’ve just read the Times article about it which is very recent, and a link to NHS chief exec recognising it as a devastating condition. How have I missed all this

I can’t film her, I tried this before seeing CAMHS and she grabbed my phone and smacked my face in rage. again completely out of her previously sweet character.

One of ours was always our "neurotypical" one. Diagnosed with autism at 18 after she came to us asking for an assessment. I do think the diagnosis was right.

Please don't compare yourself with what other parents post on SM. It's the tiniest snapshot not day to day in a difficult year.

Definitely apply for DLA. On their website, Cerebra has a guide to completing the form. Contact has a form filling service if that’s something you want to use.

If DD is unable to attend school, have you requested alternative provision? The LA is responsible for ensuring she still receives a suitable full-time education, or if full-time in any form isn’t in DD’s best interests for medical reasons, as much as she can manage. This should be arranged once it becomes clear 15 days will be missed. The days don’t have to have already been missed or consecutive. And provision should start by the sixth day. This provision has to be suitable. It doesn’t have to be traditional or academic provision. It can be therapeutic provision.

Has an EHCNA been requested? If not, on their website, IPSEA has a model letter you can use.

I would also check how the school is recording DD’s absences. They should be coded as I which is authorised.

Has DD been referred to an OT? This can help with adaptations, aids and equipment around the house.

Have you had social care assessments? A carer’s assessment for you and an assessment by the children with disabilities team for DD. If not, Contact has model letters you can use to request these.

There are grants you could apply for. For example, Family Fund. Lots of charity grants are for specific items rather than just money in general.

Has she just moved to secondary school?

Thank you. Do you mind me asking if she “changed” or burned out? I am still in shock I think as she is utterly miserable and I don’t know how to help.

Im willing to bet my bottom dollar this is not ‘just autism’. Please get her assessed by somebody willing to take it seriously asap.

https://www.thetimes.com/uk/society/article/he-screamed-let-me-die-the-syndrome-changing-children-overnight-3dvwgxjrd

No she’s been unable to start it, she’s completely housebound refusing to go out and frankly couldn’t as she will only wear this specific old rugby top.

https://www.bbc.co.uk/programmes/articles/5KRm8Yw1w6lmkTKbdPvTnBB/what-is-pandas-and-how-do-i-spot-it-in-my-child

Its convenient for CAMHS to consider that a young persons behaviour is caused by ND, because ASD is not treatable as such(ADHD can have medication prescribed by CAMHS psychiatrists but they only see you for medication reviews), ND conditions are not MH conditions and they can (and do in many areas) withdraw services as there isnt a role for them apart from sign posting, they'll cite the problems are 'behavioural', not caused by a condition as such.

Thank you so much. I shall look into all this. School have so far been supportive and absences are authorised (so far).

Please look into PANDAS and ignore the poster who advised that it’s not real. It’s recognised by the World Health Organisation under code 8E4A.0.

However there are currently no NICE guidelines for treatment so recognition on the NHS is patchy and treatment on the NHS is difficult due to the complexity of the condition but awareness is improving. It’s recently been discussed in parliament and NHS guidelines for treatment are in the pipeline.

PANDAS can often be mistaken for autism so it’s vital to explore this. The charity linked by another poster above are wonderful and have helped us so much. I’m a mum to a little boy with PANDAS who was diagnosed three years ago and he’s back to living normally again, pretty much as he was before the onset but he was so unwell before diagnosis. The longer it goes untreated the harder it is to treat. You’re very welcome to inbox me if you have any questions.

It’s so hard when it seems to come out of nowhere. I have an older son who is autistic and a 12 year old girl who was diagnosed autistic this year. Even up till 2 years ago I described her as my NT child - I didn’t see any signs, she’s nothing like my son at all. Then little things started happening - mainly sensory and emotional regulation, then puberty hit and everything went wrong. When I look back on age 4-9 all the signs were there for a highly masking, intelligent girl but at the time I didn’t see it. She is like a different girl but we seem to be coming through the worst - similar to yours, in a dark room, soft clothes, not coping with anything. We seem to be turning a corner by addressing her sensory needs (eg clothing, lighting) and finding regulating activities that work eg weighted blankets, spinning / rocking, some craft activities. It’s really hard but you will get through
it, look for parent support groups in your area for someone to talk to.

Oh gosh this is giving me hope. I can’t believe there may be another explanation for this. It is so terrifying watching your child disappear in front of your eyes. I have been losing all hope and wondering how much more we can both take.

@Nopenott0day please check your facts before posting. It’s really damaging to share incorrect information on a post like this. PANDAS is recognised by the World Health Organisation and the NHS and NICE guidelines for treatment are currently under construction. As a parent of a child who is diagnosed with PANDAS I wouldn’t wish this condition on my worst enemy but it can get much better with treatment.