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?

This is so helpful, thank you

Who diagnosed your dd with autism @Blanketsandcandles. She has been properly diagnosed yes?

That’s a lovely idea, I shall try this. I’m so sorry about your daughter and I hope this winter is not too painful for her.

Oh it's def awful. Autism can be debilitating- especially for a teenager. I think you need to walk very slowly and not start to catastrophise about the future. I have a 16 y old autistic ds at home who was home y 8 and 9 due to burnout. He started crying hysterically first lesson and that was that. Got violent at home as well. I cried every night for almost 2 years and contemplated suicide-it was hell. But it did get better gradually and today he still got some heavy ocd but he's so much better and goes to his educational setting every day.

So take all help you can get, find time for yourself. And remember- this too shall pass. Slowly but steadily she and you will learn how to navigate hee world in a way that triggers her and exhaust her the least.

Go to occupational therapy. Immediately.

book it and pay privately.

It was a private company that specialises in ND assessments that CAMHS uses as their waiting lists are so long (so CAMHS paid but we were assessed online by this other company who then fed back to CAMHS who gave the diagnosis)

So pleased to see PANDAS suggested on here- that came to my mind too. My friends little boy was diagnosed with it a while ago, it’s such a strange thing and so little is known about it still.

good luck op, well done reaching out.

So sorry you’re having to go through this. It really is a rollercoaster. Each chapter comes with different challenges. We have found that the more we learn and the more experience we have, the easier it is to adapt. There will be a lot of challenges along the way but you will be fine. Sending love

Thank you. In my lowest moments I have thought of suicide because she talks about wanting to die and I think I would if she ever did. A year ago I’d have said this was the most unlikely thought I would have.

Sorry I don’t mean to trigger anyone.
thank you for making me feel less alone. And that there is hope.

@likelysuspect it’s a complex illness and each child is different but antibiotics for 10 days is usually a starting point to get rid of any lingering strep infection. This made a huge difference to my son. Once somewhat better, symptoms can be triggered again by any episode of illness, as it’s an autoimmune condition so antibodies to illness cross the blood brain barrier and cause inflammation in the brain. We managed these flares in symptoms, under the guidance of our consultant with ibuprofen which is an anti inflammatory and antihistamines are commonly used to manage symptoms. Other children need further medication and may need steroids or other medications. One of the trickiest parts of it is just how different the treatment requirements are from child to child. There are guidelines named the Nordic guidelines that are used in the Scandi countries and can be a great document to take to a GP.

I don't want to be the one jumping to conclusions but at her age, and a huge change in character seemingly quickly and getting worse, I would be wondering if she'd been abused or had a trauma of some sort. It could be another child or adult but can cause the most horrific change in character, eating habits, physical symptoms, school refusal, agroraphobia, anxiety, depression.

https://www.nspcc.org.uk/keeping-children-safe/effects-of-child-abuse/

It could very well be someone she trusted or has made her feel she has to keep it a secret. Has she had any therapy at all?

i feel for you.
I’m not an expert in this but to share some information/insight provided to our family. Financial struggle adds an extra layer so hopefully this can help a bit.

i have two kiddos with adhd (not the obvious hyperactive type). One had/has sensory issues since very small and autism was a fear.
I do think you’re right to push for a more complete work up. It could be that autism was camouflaged all of this time (and amplified by environment or hormones) but there is a lot of symptom overlap with ADHD, depression and even some acute disorders.

Neurodivergence of all types is amplified by a triggering event (virus, hormones, vitamin deficiency,stress). I think that it may be a key to remission efforts or at least a path forward for treatment/prevention of future burnout.

Regarding neurodivergence, our pediatrician explained:
executive functioning delays contribute to many symptoms experienced differently by everyone. But these can also cause social problems and subsequent depression issues that can appear suddenly.
you may not see prominent issues until around 10-12 because they’re blending with peers and may be a natural academic. But around this age - the learning demands ramp up, their peers are maturing differently and they may experience social consequences from less self control in relation to their peers.

For girls, the onset of hormones can be especially triggering. There is some really good research recently identifying the connection between executive functioning problems and hormone shifts.

Reduced cost assessments:
sometimes university psych departments offer psychoeducational assessments at reduced rates (overseen by the department head) and conducted by their masters students. They may even take you on for a general evaluation (not a PEA) pro bono. Its certainly worth checking out given your situation.

Treatments:
Diagnoses aside, I understand autistic burnout requires a unique protocol - there are treatment options that may be applied to adjacent conditions but sometimes off label to autism.
Neurodivergent girls may experience remission/treatment with an SSRI and/or a low dose pill (or similar) to stabilize hormones. But there are also a few OTC vitamins (as also suggested) that help calm the nervous system and lessen the effects of perception of overstimulation.

The overarching theme is that there’s extra brain sensitivity to changes: such as hormone fluctuations, vitamin insufficiencies (B6, D for example), environment, etc. So identifying and stabilizing the contributor helps while SSRI’s can reduce the brains sensitivity to the stimulus.

i saw a few posts where each of these were identified - all are valid possibilities individually or maybe even together. A comprehensive blood panel is an excellent starting place also (to rule out inflammation/infection and specific vitamin deficiencies) as trigger points.

Regardless, much respect to your doctor for recognizing this possibility and subsequent diagnosis. Often kids are misdiagnosed with behavioural disorders - which doesn’t put them on the right treatment path.
But in your case, i think comprehensive investigation into triggers beyond environment will be helpful - especially because her age aligns with significant hormone changes.

You’re an awesome mum for pushing for a solution and you’ve clearly been very supportive - hopefully this is the hardest part.

All the best.

❤️

Another one in the same boat! My daughter was diagnosed with ADHD in primary school, managed well, social and loved school until Year 9 when it all fell apart. Diagnosed with Autism and anxiety, burnout was never mentioned and the way we were treated by school and the family support worker has left lasting damage to us both, she was unable to return to school apart from the odd lunch time, GCSE’s were out of the window. CAMHS were not any help, after 3 referrals only a course of CBT was given, they declined anti-depressents/anti-anxiety meds she asked for. Sensory issues that were minor before were hugely increased and are still quite high 3 years later. It took 2 years before she was able to socialise again and she started college in September which she says she enjoys but has begun to struggle, can’t get up in the morning and has had warnings about her attendance

I’m pouring over this, thank you so much.

I’m so sorry you are in this rocky boat too. Do you mind me asking how she got back to school and socialising? This feels unfathomable to me just now.

PANS/PANDA was my immediate thought too so I am so glad people have suggested it. I know of people who have this diagnosis for their child and have been where you are and emerged out of the other side.
My daughter is autistic and there were always signs. She is very academic but also clearly neurodivergent (certainly to me at least). Yes, she has always masked but has always imploded at home, in her safe space.

Sending a big hug, it’s a fairly typical age we found for everything to suddenly go awry if there are underlying issues.
Our eldest is now 13, when he was 10 he literally fell apart at the seams… He had always been described by teachers as ‘quirky’ and is definitely an old soul who struggles socially with his peers.
He went from seemingly coping with life to screaming, throwing objects, destroying things.
To cut a very long story short due to waiting lists we did get him seen privately, had to put it in a credit card. He was diagnosed with Autism and possible ADHD (but wouldn’t/couldn’t do some aspects of the testing.
He has always had sensory issues other clothing and does exhibit sensory seeking behaviours, that I didn’t really pay much attention to as they were fairly subtle.
The consultant explained that he was masking so much at school, trying to fit in and with the extra pressure of year 5/6 he just couldn’t cope anymore.
They gave us strategies to help him and to be fair once we realised what we were dealing with things have settled.
Secondary school has helped because there are very definite rules and expectations in place, he had found his tribe where he fits in.
The downside is that once he gets home, that’s it… he doesn’t engage with us really at all and I know better then to try and ask him anything for a good couple of hours after school when he is just quietly in his room.
No real advise but just wanted you to know or I literally cried buckets when speaking to the consultant, I couldn’t work out where I had ‘gone wrong’ and thought I had failed him as a parent, and I just wanted him to be the little boy he had been.
His school have been brilliant, really nurturing and kind which I’m sure is why apart from the odd day of school refusal he mostly attends, I certainly was pulling my hair out and found no joy in parenting him when we were in the trenches of it.

You’re frightened op, it’s palpable in your posts. You’re not only dealing with this but probably every other time you’ve felt alone and scared in your life bubbles up as well during these difficult times. Thousands upon thousands of parents have and are feeling how you are right now feeling like we are ‘walking without feet’. Please know that you’re not alone, you’re not unusual and this is an emotional journey that many of us have travelled through and out the other side safely.

PANS/PANDAS is real, but there's a cottage industry of pseudoscience around it, a bit like Lyme disease (sorry I can't think of a good example that's more common in the UK!) No doctor would dispute that Lyme disease is real, but that doesn't mean everyone claiming to have "chronic Lyme" disease has it. My hypothesis is that some parents latch onto it because they want to believe their child has a curable illness and not a lifelong mental health condition.

This doesn't sound like PANS to me. PANS is typically much more rapid in onset, and the symptoms more like OCD than autism. This does sound like autistic burnout with a useless GP/CAMHS. 11-12 is typically where children like this lose their ability to mask as both academic and social demands ramp up. I do wonder what's going on in English schools as the rate of children simply having to stop going seems much higher than the US or Canada, or if the situation is simply that the services are much less adequate.

It's also recognised by the NHS and NICE

Thank you so much. I’m so glad you got out the trenches.

Thank you so much. I am desperately frightened.

The thing is it's very very rare. But it seems to be jumped on by parents of neurodiverse children as something preferable, and they then go down the route of desperately trying to make it fit, as then the situation is treatable and will be temporary. But it very rarely is, and their behaviour is usually bizarre and not the classic symptoms of autistic burnout etc.

I don’t know the symptoms of low vitamin d but I read an article the other day when it was estimated that one in four teenage young women are severely deficient in vitamin d. Really important at this time of year when we don’t go out much and when we do are well bundled up, to make sure that vit d is accounted for in a diet or in a supplement.