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?

Thank you. I’m sorry you have lived this too. Can I ask how he ever went back to school? And then did he burn out again? I’m scared this is just our lives now.

I guess I don’t really understand burn out. When I say she changed from fine to very not fine I mean that. My colleague burned out due to stress but she was clearly struggling for weeks and months before she hit burnout. But there were 0 signs with my DD until she imploded. Is this normal for autistic burnout?

Oh and OP if nobody has said it see if there are any benefits you can claim to help financially now that she is diagnosed

Hi op. It’s not unusual for girls to be able to massively mask until that age and it all sort of unravels for a while. I suspect, without realising, your sensitivity for her needs have meant it’s taken this long for the wheels to fall off. She just needs space and time right now. Sounds like you all need more breathing space and room to recalibrate.

I will definitely have a look at benefits. I’m a mid -earner (c40k) and understand carer’s allowance is only available if you work max 16 hours a week and this wouldn’t be possible with my outgoings. I didn’t think we would be entitled to eg DLA but I shall explore that too. I have also read you can take a 2 month mortgage holiday. For the 99th time in my life I wish I had savings but if I had one wish it would be for her to be well again.

You are her birth mother, you grew her and you have raised her, you know her more than anyone else.
You would have known if she had autism before now.
What’s happened socially for her in the last year? Does she have a smart phone / social media? The constant information and pressure coupled with starting a new school is insanely stressful for a developing brain, no wonder kids at this age have these breakdowns.

It’s so scary that you think your child is fine and then they implode and it’s actually down to ND I totally missed. If I’d known sooner, what could /should I have done differently to stop burnout? She has/ had 2 girls in her class with autism and to my knowledge both are doing great.

I wish I had savings but if I had one wish it would be for her to be well again

She will op because she clearly has a mum who cares deeply about her and that is the single most important thing.

tears at this kindness.

My ASD DD was a happy, bubbly child until puberty hit at 11. She's 14 now and still not the same, we've spent a LOT of money on psychologists which is the only thing that seems to help much. We've had the not eating and now trans. Not much advice, sorry, just letting you know we are in the trenches too.

https://commonslibrary.parliament.uk/research-briefings/cbp-10493/

It's definitely worth doing proper research about PANS/PANDAS that's not from an advocacy organisation. It is not a widely recognised condition with consistent diagnostic criteria. It's a diagnosis of elimination and as such is almost certainly a group of challenging-to-diagnose conditions with some overlap in symptoms.

Yes, it's common for autistic people to burn out like your DD. And it's very common for parents to miss a lot of signs of ND in their own children, especially girls. All three of my DC are diagnosed autistic, and one was only diagnosed at 15. I thought she was the ND one, but in reality she scored the highest on ADOS of all of them. She was just very good a mimicry and copying to fit in. Until it all got too much and she suddenly couldn't. It did feel like a very abrupt change in her personality to me, but she articulated it completely differently.

My DD was diagnosed with ASD at age 12 but I wouldn't have ever thought she was autistic in her younger years, it was only when puberty started when she was around 10 that she started struggling. As a young child she was really confident, happy, started talking and reading early, did really well academically, no issues with friendships etc. By the time she started secondary she was like a completely different child and had 18 months out of school literally unable to set foot in the building. Now she's 14, doing GCSEs and much happier and back to "herself" a bit more. She now has an EHCP and goes to a very small independent school because state mainstream was too overwhelming for her. She also takes Sertraline which takes the edge off some of the anxiety. Her psychiatrist said "adolescence is horrendous for autistic girls without anti depressants!" I also have a 12 year old DS who is autistic with challenging mental health issues, who doesn't go to school and spent many years sitting on the sofa in his pyjamas crying and asking me to kill him. We have had a lot of support from CAMHS with him including anti psychotic medication and psychological therapy, so sometimes CAMHS do help, but the bar is quite high. You might not want social services involvement but we had Family Support when my son first stopped going to school and she helped me with things like EHCP applications, DLA application and making sure the school was doing what they were supposed to.
Definitely apply for DLA and carers allowance. Ask for an OT referral. We have local Facebooks groups for SEN parents that can give you ideas of what support is available locally to you. Ask school to apply for an EHCP and if they don't, apply yourself. My son has a tutor who comes to the house 3 times a week and also equine therapy. You should be able to access this through the school/local authority as she's unable to attend school.

I’m sorry you are too. Thank you, so much.

I’m so sorry you’ve had this too. Thank you for sharing. I would frankly welcome anybody in to help just now so I’ll reach out. The wanting to die comments hit me hardest and I feel so ill equipped to deal with them.

I totally relate to this.

My 22 year old DD has been diagnosed with inflammatory arthritis and I could cry whenever I think of her doing cartwheels as a child. Obviously this is a very different situation to what you're going through but I still feel I'm spending every waking moment thinking about it and completely clueless as to how best to help.

I wonder if it's worth trying some written communication? Just little notes through the door saying what you've had for dinner, a comment about the weather, a silly story in the news. No pressure on her to reply but letting her know you're always there for her when she's ready.

About the rugby top

Is her skin hurting? Or is it doing any weird sensations with the clothes? What happens if she accidentally brushes against something?

Has she had a full set of blood test? Have they checked her inflammatory markers?

Sorry for all the questions. I feel like there might be another explanation here. And I think the doctor should be looking at that possibility instead of just assuming

Right. Being a SEN parent is hard. Yes we love the kids, but it’s exhausting and lonely (even when you’re a couple).

On clothes - Shein/Temu are your friends. Because they are cheap and it’s less painful when they reject something that cost £3 rather than £30. Yea people will tell you it’s evil - but I stopped caring when my DD would only wear one specific type of outfit/fabric.

On shoes - anticipate pain here too. We live in flip flops and trainers with zips. don’t fight it.

I’d keep returning to the GP. You only get help when you’re too annoying to ignore.

I am going to ignore the posts from those skeptical of masking, and won't be drawn on whether your dd really is autistic or has some other condition or trauma response instead of autism.

I came here to say that yes, I have been through this (two or three times in almost 10 year old dd's life so far) and you are not alone. I understand just how desperate you feel and have been at the rock bottom you're now experiencing. On each occasion, with our careful support and knowledge of her, she has come through it and our little girl has returned. It has taken time, patience, understanding and a collaborative effort from us as parents, and multiple professionals. But yes, things can and do get better.

I won't repeat here our own experiences, but please dm me and I'll happily share what has helped, what hasn't, and why. Our dd was agoraphobic for several months earlier this year, and we were almost at the point of reporting things to social services. She is now doing 3 mornings a week at school and increasingly engaging with education and describes herself as 8/10 recovered from her own burnout. The difference in her has been immense.

Good luck op, you are not as alone as you think you are. 💐

Yes, we got a private diagnosis of combined Autism and ADHD. They initially tried ADHD meds but it was horrific for her.

I had to push like hell but my instinct was that just lifting her anxiety a little would help, and it did.

She wasn’t able to engage with CBT and actually you’re usually told not to bother before medication, as most can’t.

The dead eyes are terrifying. Take my advice and lock away medications and sharp knives. Hide the key to the front door at night.

Yes I echo the post above. Our daughter refused school for several years I ended up home schooling with on line tutoring which luckily we could afford. She is now at College taking A levels has lots of friends and is off to University next year. It really can change and did get better for us it was incredibly hard at the time though so please know that there is hope.

You know your daughter so do look at other possible reasons for the change
If it is autism
please know that sometimes she may not demonstrate the love that she feels (beyond changes of mood of puberty).
I have autism adult diagnosed but definitely always there with sensitivity to fabrics etc.
As her strength improves encourage her to try therapies offered and help with navigating the world.

Talk to education charities and I know there are very knowledgeable SEN parents about education. (Make sure you are discussing with parents in the same country including the parts of the UK as some is devolved to Scotland, Wales etc)

I know my parents had to really argue at times. For example not attending school needs to be planned education rather than a drift into “how it is”. As an example My school did not bother to tell my parents that I was not doing PE for three years even though my plan then called Statement) covered it. I really hope that would not happen now.
edited to also add best wishes OP

I am not entirely sure….it seems to be a mix of fabric, everything looking “wrong” and an attachment like a toddler to a dummy to this top that previously held 0 meaning to her. She also refuses to wear anything at all below the waist now.

I don’t think this is a helpful line of thinking, love. You have the child you have, and autistic children may burn out. Especially girls reaching puberty and secondary.

When I look back I can see now the odd sign but I didn’t ever think to connect the disparate little dots, and she’s never gave even got a CAMHS referral based on them anyway.

I’ve just had to go private for an ADHD diagnosis for my son; the NHS waiting list is four years long. It’s an absolute national disgrace.

Thank you so much. Oh my goodness 8/10 in your daughter’s own words is so beautiful.

Just another take, and please don't freak out, but this was me at 11 - depressed, anxious, reactive, not coping at school or socially. I had been sexually abused. Is that a possibility? There is a lot in what you say that suggests trauma to me.

I actually am autistic and don't reject the possibility she's been masking, but there are other possible scenarios too, especially if the changes have happened in a short space of time with no other manifestations in the past. An autism diagnosis will require evidence of impairment from an early age.