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?

I’m so sorry you’ve gone through this too. I am glad things are getting better for you now. I have looked into sensory equipment, it’s all so expensive and she is just in her room all the time. Thank you for giving me hope.

People saying the strengths that come from being a SEN parent mean from within…. They mean you have to cope with an absolutely brutal situation and you will become more capable from it. They don’t mean life will be nicer or you’ll get help, unfortunately.

I don’t think I am strong, I’m not coping and hate my life now. I’m scared to leave her alone as she has intrusive thoughts and it’s so isolating being in all the time. I cannot fathom that a year ago she was enjoying play dates most weekends and was happy.

I’m sorry you’re dealing with this. It sounds truly horrific and must be very hard to bear. I see your struggle and fear and pain and desperation for it to go back to how it was. It’s OK to cry or scream. Take things an hour at a time. Try not to stare into the future too much.

Thank you. I really do wish we could go back. It’s like night and day.

Yes it gets better. This happened to my DD when she turned 13. With suicide attempts thrown in.

She was out of school for about a year, then kinda in kinda out. But now she’s off to college and has a part time job and is very happy. She’s on a low dose of Prozac.

Theres no help. I’m sorry but you’re right about that. Love her, take school off the table for now, be low demand with her, find ways to hang out where it might be easier to chat, go for long drives to get coffee from far away places.

It’s fucking hard and I don’t know that I’ll ever truly get over those days. But it is in the past and she is fine. Your DD will get there too.

This sounds like textbook PANS/PANDAS. Unless she was masking better than anyone else for 10 years.

I’m so sorry you went through this too. We haven’t had suicide attempts but in her worst meltdowns she screams she wants to die. It’s horrendous to hear my darling girl say this. Can I ask what changed? It must be so wonderful to see her happy, first and foremost, and also in College and working. Incredible. Thank you for sharing this.

It is so odd. If she was masking, I genuinely didn’t know. but CAMHS said girls are master maskers.

I would be very tempted to at least get a second opinion. The NHS is absolutely dire atm. I wouldn't take as gospel anything they say.

It won't be forever but it will take time. A lot.

My friend from school was just like this in the early 90s. She had a total breakdown in year 10 and disappeared from school and life generally. At the start her mum was trying all sorts of things to try to get her to reengage with her old life (which included roping me in to try to help) but it was really the wrong way to go. After some wilderness years and a lot of counselling and therapy she eventually started feeling able to build her life anew and got a place at a specialist autism school and was able to get a some qualifications but only once she was able to do it on her own terms. I didn't get to see her for years but we re-forged our friendship eventually (I'm the only person from school she has contact with, and I was also eventually diagnosed with autism decades later) and she has a functional career and a family now.

The previous life of trying to mask and try to emulate neurotypicality was too much pressure and was a horrible burden to carry. The person she was pretending to be was not her.

Your DDs current reluctance towards even the simplest things (like getting dressed) is going to be proportionate to how heavily she feels that burden so the more you can stop trying to persuade her, or even asking her if she feels able to try, and start reassuring her that she's ok and there is no requirements and no pressure, the sooner it will be that she can start to feel better.

I’m so sorry, OP, but delighted to see how many responses suggest exploring PANS/PANDAS. Many kids who have Long Covid develop PANDAS along side that, and autistic children are at greater risk for Long Covid. My kiddo is back to their usual (autistic) self after aggressive anti-inflammatory and antibiotic treatment, and tons and tons of rest. There’s every chance you’ll need to go privately to get help as GPs, CAMHS, schools, and on, don’t seem to have the same awareness of it as MN!

You sound like an amazing friend. Thank you for sharing this.

This is all new to me. I am staggered by this and so much does fit.

What is the treatment?

Hmm what changed.

We got a private diagnosis which…really meant nothing apart from now we could access medication.

The lowest doze of Prozac and three days later, my girl was back. Not back as if nothing had ever happened, but that dead look in her eyes lifted and I could see her again, you know?

She has almost no memory of that year at all.

Sorry thats not actually helpful is it! We tried counselling but she just didn’t have the emotional language to express herself properly. It was really all the Prozac, and just loving her as she was in that moment.

I was not perfect and lost my shit through fear often in the early days, but I learned over time to gather myself and take deep breaths before responding to anything.

Unfortunately, 99% of this is absolute bull for the ‘gram and not real life at all. While you definitely will be able (at some point) to see their strengths, the day to day with SEN is hard.

My son’s 11 & on his second round of autistic burn out. It sounds similar.
He’s struggled a lot with leaving the house, eating, noise sensitivity. The first time round he literally spent 8 weeks sitting on the couch.

He’d get up, sit on the couch in the morning & literally not move until it was bedtime. He couldn’t even use the toilet & was completely reliant on us for everything. He was flat, unless you asked him to do anything, or I wanted to leave the house which then triggered a panic attack.
It’s been different this time. He’s been angry & destructive, although he’s still been unable to leave the house.
He was back to himself in the middle. In a new school, able to leave the house, enjoy life again.
We had to focus on recovery first before we could do anything else. We lowered demands to barely nothing. Fed him what he felt he could eat & even things like hygiene were done when he could manage them, rather than when thought he should shower etc.
I didn’t hoover for weeks as the noise was too much for him.
Support was lacking. School just wanted him back in. Cahms were bloody useless. An urgent referral in August for self harming eventually evolved into a report sent to us 23rd December. We've had to pick things up as we go along & see what works. No parenting course was useable in those moments that he was throwing things around his room.
Masking is 100% a thing from our experience & it exhausted him.
You're in the depths of it now OP, but it can get better. In the meantime, do some of your own reading, document EVERYTHING with school -follow up every call with an email
even if it’s just recapping what was said. It feels unnecessary but it isn’t.

I've been where you are (and may end up there again) and its fucking brutal. Don't add to your worries by thinking that you should find this an enriching experience, it isn't, its isolating and anxiety inducing. In our case my daughter was 10, already diagnosed and I had suspected autism from about 1 yo, but she was very much as you describe, could only tolerate one t-shirt, wanted to be in her room, eat in her room, got anxious about any thought of leaving the room even to go to grandparents who she loves, absolutely would not go to school. She went from managing relatively okay to not coping at all, I would say now that the signs might have been there, but I didn't see it coming. I don't want to tell you that it quickly turned round, it didn't, it took months and a reduced timetable at school and a lot of patience. I was advised not to make school the hard line, so basically not to say 'if you don't go to school, you can't do anything'. Try to engage her in something that she might enjoy, maybe do one activity a week, then work up from there. For the time that she was at the worst, I went with the flow, let her eat in her room, wear the one top etc. I didn't fight it, because you can't. Then we started doing a little bit more and just built on it gradually. There was a point when neither me nor the senco at her school thought that she would make it in to secondary, but she has done. It's not perfect and there have been a lot of wobbles and attendance still is not great, but its better than where we were earlier this year when she was just sitting in a dark room.
You are right that there is not much support out there, but you might find that there is a parent group. There is one for my area and sometimes it just helps to know that I'm not the only one struggling with this, when it can feel like everyone elses children just seem to be skipping off to school and having the normal problems for their age.

It is very helpful. My daughter’s eyes look dead too. It’s one of the things that scares me the most. It’s like all the light has gone. When you say a private diagnosis, do you mean for Autism? And Prozac prescribed for that? CAHMS did offer her CBT but she won’t leave the house at all and won’t come to the screen for online sessions so that ship sailed. And now it’s just her and me, 24/7 in the flat.

This is because she is currently in crisis and struggling. Of course this is painful for you who loves her to see. That does not mean it will always be like this. What support are you and she being offered?

This sounds truly awful OP. Im so sorry this is happening to your sweet girl. You need to advocate for her, you need a second opinion to explore all other possibilities aswell as autism.
I cant believe no other possibilities have been explored, considering MH or other neurological conditions.

I feel ALL of this. Thank you. What is it with this one rugby top? I don’t get it. I don’t get any of it. I fear I don’t have the patience to do this for years. I feel like she’s had an accident that I’ve somehow forgotten and has changed personality since. It’s horrific. thank you for the hope.

As toddlers? 4 year olds? I don’t believe it.

Antibiotics for the underlying infection.