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 have a friend whose daughter has Autosomal Dominant Hypocalcemia. It presented as severe OCD to start with. After treatment the OCD cleared up.

Another teenager I know had intense anxiety and all sorts of weird symptoms, including crawling sensations in her skin- all of it turned out to be caused by coeliac disease.

In both cases the kids were fobbed off for years with mental health or SEN diagnoses.

Every word of this. You essentially have to re-train their nervous system not to experience everything as fight, flight or feeeze. That takes time, and having reduced demands for some time to enable them to recover sufficiently, you also have to be adept at knowing when and how to gradually increase them again once they have sufficiently recovered. By experiencing success again, in baby steps, and experiencing feeling safe again, their nervous system slowly learns to 'recalibrate'.

@Blanketsandcandles it is so overwhelming and terrifying. We have been in a similar situation and I want to just send you love and strength. Take it one step, one day at a time.

This is my opinion, based on observations, working with SN children and not medical fact.
I think part of an issue is there is inflammation that is causing systemic stress responses within the body/brain.

It’s why I think a focus on a low carb/ non processed food diet, a fish oil supplement, drinking water can help calm the inflammation down. Alongside a focus on nervous system regulation can help: eg swimming, weighted blanket time after school, breathing exercises, jumping on a mini trampoline for 10 mins before school - can help soothe a dysregulated nervous system.

I haven't read the whole thread, but I'm another one whose autistic daughter didn't start displaying any significant issues until age 11. However, we were already on the (private) diagnostic pathway and once she was diagnosed, so much about her earlier life (her quirks, challenges with friendships, etc) made sense.

But, while it wasn't a massive surprise to get a diagnosis, what was a surprise was the extent to which the wheels came off at 11. She started having nightly melt downs (having never had a tantrum in her life), became disregulated to the point that she often said she wanted to die. It was pretty awful and took me to the brink.

For her, it was the combination of starting secondary and puberty. She's 13 now and things are much, much better.

I've found the autistic girls network on facebook very helpful.

and yes, bollocks to that 'strength' thing about sen parents. It's very hard, especially when you're in the early stages of it. But it does get easier, I promise x

And just to add, the community on the autistic girls network really helped me understand the importance of 'low demand' and that what is regulating for an autistic person may be very different to neurotypicals. DH is endlessly trying to get DD to 'get some fresh air' and really doesn't understand that she needs days on weekends/ holidays to just hole up inside, not having to engage with the world, so that she can recharge.

If it's burnout she will need rest with few demands. Does she have any hobbies or special interests? It's good to keep those up.
Hormones, secondary school and the constant demands can be overwhelming for autistic kids.
Keep on at CAMHS and if needs be get the school and doctor to get on to them.
Get an EHCP with School so she can have alternative provision if required.
She will get better as time goes on.

I was going to suggest reading about Pandas too

I'm another one with an autistic daughter who is now nearly 15. This is actually a very common scenario, particularly in girls and intelligent boys.

My Son was diagnosed with ASD when he was 15 and even knowing this, I completely failed to spot the signs in my daughter. The first sign was probably extreme anxiety in year 6 about the transition to secondary school. She's now in year 10 - last year her attendance probably wasn't quite 60%.

She hasn't ever completely burned out, but has come very close to it. I can now tell when she's very overwhelmed and needs all demands removing - I've kind of learned to read her signals. She can completely shut down and become almost catatonic - is unable to speak even, but can sometimes type me a message on her phone. The sensory issues are definitely worse when she's overwhelmed.

It's actually very obvious that she's autistic now, but I completely missed it until she turned 11.

Your daughter will get better - just remove all demands, look after her and love her and she will slowly start to come back to you.

As others have mentioned, the LA are obliged to provide her with an education when she is unable to attend school - she actually sounds too unwell for this at the moment, but it's definitely worth considering as she starts to get better.

Good luck and I hope your daughter comes back to you soon

PANS but from Lymes disease - any tick bite history, have you been to high tick risk areas, you can easily and relatively cheaply buy a test online for lymes disease, might be less stressful then the GP if they aren't being particularly helpful.

Look into PIP too

Hang in there op, it's not forever. I was in the same boat as a teen, not leaving the house or going to school due to autistic burnout, but now I am an adult and am able to live alone, have a dog, don't need anyone to take care of me. Autistic burnout is just a bitch, just give it time and it will pass.

No one noticed any signs I was autistic either until adulthood, it's not even necessarily due to masking, it's because if a child doesn't have any behavioural issues and is smart, their autistic traits gets classed as "quirks".

I don't know about the Pandas side of things but in terms of mental health support if Camhs have offered CBT and your daughter is too anxious/depressed to engage then if you would consider medication with an anti anxiety or antidepressant I would ask them for an appointment with a Camhs psychiatrist ( from our experience they can only be prescribed by a psychiatrist for under 18s). We found that the medication allowed things to subside just enough to make therapy possible. I don't think I would just write this off as autistic burnout. Although it's a difficult one because depression and autistic burnout have similar characteristics but burnout needs low pressure and time where as depression may respond to medication and therapy.

Thank you all so much. I’m reading each comment and they mean a lot to me. Struggling to reply as she is very upset and angry so keep having to pop my phone down.

I'd 100% recommend looking into PANS/PANDAS as others have suggested! Not to say it couldn't be autism and burnout, but it sounds like she's really struggling and I think it makes sense to rule out something more immediately treatable. I know there's some debate over the existence of PANS/PANDAS, but it seems to be more accepted as a condition now than it used to be and even as a staunch pseudoscience sceptic, I've always thought it sounds more plausible than many other disputed conditions.

That said, this is a very typical age for girls to fall apart when it comes to autism. I experienced similar, though I never quite reached the point you describe with your daughter I went from a pretty well-regulated childhood to an absolutely abysmal adolescence. I don't think I had a proper full-on violent meltdown until my early teens and I was beset by comorbid conditions; I believe it was partly hormonal and partly because of the transition to secondary. I didn't really "recover" from that phase until my late teens, when I dropped any organised hobbies to reduce expectations and pressure, went on study leave for my GCSEs, and began hormonal birth control. I was later helped by being able to sleep on my own schedule, antidepressants, and DBT/mixed approach therapy. CAMHS only offered CBT at the time, which unless specially adapted is notoriously useless for autistic girls.

I'm not suggesting or recommending any particular treatment here; just saying that I did eventually make it out of that truly awful burnout and into an enjoyable and much more stable young adulthood. Though my mother had first suspected autism at the age of 4, the doctor disagreed and I didn't get diagnosed until referred by the school at 15 for poor attendance. Starting at 11 I hope your DD has more time to figure out herself and her limits, and though it's incredibly hard to get much help I would try to keep pushing with the GP and CAMHS, and maybe some charities who might be able to make some recommendations such as the NAS. I hope both you and your DD can begin to see the light at the end of the tunnel sooner rather than later, OP- you sound like a great mother trying your absolute hardest for your DD, and I cannot stress how much difference that alone makes. I wish you both the best of luck!

(Also, I don't mean to say that no autistic girls find CBT helpful- I am sure there are those that do! And I expect CBT therapists are far more aware than they used to be about the potential pitfalls. Also, as a PP has said, it's not unusual to need an antidepressant to get to the point of being able to engage with any therapy properly. It's just worth remembering that if it isn't especially helpful to try not to let that put either of you off therapy in general. DBT, and mixed-approach therapy including DBT techniques, absolutely changed my life.)

That’s so kind, thank you. I feel like I’m failing her as I can’t fix it. It’s good to know I’m not.

No way I don’t buy this masking for 11 years story for one minute. She’s evidently intensely distressed, I hope you both get the help you need.

Not to break your bubble OP, but I was diagnosed with autism in my 40s, after seeing a bit of myself in my ND sons and being a master masker growing up. I was a very easy baby and a model “A” student until high school, when I struggled terribly with burnout and anxiety. I loved books (eventually became a librarian) but took time off school, distanced myself from my few friends, and worried my parents up until my mid twenties. I was lost. I’m now approaching 60, married 30 years, raised two children and live mortgage free. And I had a great career (recently retired).
Your DD won’t always be like this. She’s just in a crisis right now that is temporary. With support, things will get better. 🌸

Are you sure she hasn’t experienced something traumatic that’s triggered this? A friend’s DD went mute and refused to leave her room after a really awful bullying and blackmail incident that only came out in the open during therapy a few months later. If kids in her class have mobile phones, they can be a horrible tool for bullying.

How long have you known that she’s autistic? Sorry - just realised that it’s literally now!

PANDAS was the first thing that came to mind for me as well tbh.

I am no expert but I believe that masking is something that happens outside of the home and the effort of masking results in meltdowns and exhaustion at home when the child feels safe. It isn’t something that happens at home. Normally the struggle for parents is getting teachers etc who only see the child masking to believe that there is a different presentation at home.

My nephew has been diagnosed with PANS PANDAS and I thought of that too. I don’t think it is pseudoscience, though it is a new condition that is still being researched.

My daughter completely fell apart at age 9. I had suspected ASD, but that is because of her father and me. We were able to access private services and I am not going to lie, that did help. Getting her to a child psychiatrist that could prescribe anxiety medication had the biggest impact.

There have been hard times. It has been difficult and definitely more work than parenting a NT child or the same age.

she is now 17, doing extremely well in school, doing volunteer work, driving, and leaving for university in the fall.

highly intelligent girls with ASD have a pattern of no longer being able to hold it together in this age range. They also tend to recover and do well. You just have to get through this period and get her back on track.

I am also much like my daughter and I had absolutely no support. It was a different time. I still managed to succeed as an adult. If your daughter has your support, the odds are high she will be fine.

Totally normal and typical for this age. My AuDHD now15 yr old has had continous burnout since secondary.
Look at the https://www.facebook.com/share/g/19YUnGtHjK/

I have an 11 year old girl with SEN, whose traits were picked up at 2. It’ll be hormones, change and not wanting to grow up. Plus check screen time/ special interests taking over. Have you looked into starting the EHCP process? Sorry it’s all very overwhelming for you right now.