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?

One of the biggest errors we make as parents of autistic kids is trying to jolly them out of their heads like is absolutely the right thing to do with neurotypical kids. We’re all brought up to believe that fresh air, moving around and seeing other people are the answer to people feeling down or a bit depressed but this is absolutely not true of autistic kids.

In the normal run of things autistic kids need space just to exist without being perceived by anyone, they need to be able to shut off and reset. If they have this space then they can re-regulate and then be encouraged to participate in things and they’ll probably enjoy them much like other kids BUT when an autistic kid is in burnout the very last thing they need is being encouraged to do things or for people to jolly them along or tell them that they need to get out and about because it’s good for them.

As hard as it is to do as a parent, when an autistic person is in burnout the best thing you can do is step back, remove every possible demand on them, and really give them time to reset.

If one shirt is all she can wear right now let her, if she can only eat one meal let her, if she wants the lights off let her, if she doesn’t want to talk let her. It all feels wrong because it’s not what we're ‘supposed’ to do as parents but it is what a burnt out autistic person needs.

once the pressure is off and her brain begins to trust the space you’re giving her then her body and nervous system will start to recover and she will have more mental space to do things again.

Have you looked at your Local SEND provision? There are things like parent carer forums and advice and support. Having been through similar, I would say don’t push your daughter to do anything: let her eat what she wants, wear what she wants and stay in her room with the curtains closed if she needs to. It’s all part of recovery and will take time. Read up on autistic burnout and join groups on social media so that you can get some support because it is hard. Take care of yourself too.

I’m really sorry to disagree here, but my son also suffered autistic burnout at 12 and we didn’t suspect autism. It was very rapid when he transitioned from coping to not coping, but looking back he had social difficulties and difficulties with changes to routine which we’d understood as shyness / anxiousness. Anxiety runs in my family so seeing his traits through that lens made sense. We also were told that for girls and intelligent boys, masking can be second nature and they do it very effectively until they can’t anymore. The point where ‘the wheels come off the bus’ is very often start of secondary school or onset of puberty, as social pressures increase so significantly. I was surprised by the diagnosis and shell-shocked by how changed he was, but as we continue I think my lack of recognition of his autism was down to my lack of understanding of what autism is / isn’t.

But what you’re seeing in burnout isn’t an ‘unmasked’ authentic self, it’s your child with a completely overwhelmed nervous system. By the time they are burnt out they likely have an acute mental illness on top of the autism - in our case this is severe anxiety. Medication and treatment is possible for mental illness (though not in our experience through CAHMS) and as the illness is treated and they are able to rest and get appropriate supports in place, their nervous system can return to a less overwhelmed state and their behaviour can return to something more like normal for them. We aren’t there yet but medication has helped as has learning more about autism and how to support him and advocate for support through the school for him.

Can you ask for Right to Choose? My daughter was diagnosed last year. Took 5 Months from initial gp appointment to getting the diagnosis.
We were given a list of places to choose from the referral and chose the fully remote pathway.
I understand that fully remote isn't going to work for lots of ND children and that they would need to be in the room for the assessment.

Has your DD been offered any specialist support/counselling to come to terms with her diagnosis.

I worked with teens until recently and have seen a significant handful come apart when diagnosed with neurodivergence...it's like they lose all sense of who they were before the diagnosis and become the condition in its entirety.

The SEN team at school might be able to help with resources. I know the one at my former school had a booklet they used with newly diagnosed kids to help them accept the diagnosis and what it meant for them as an individual rather just a tick list of symptoms.

I'm so sorry you're in the trenches with this op.

We also had a very similar experience when our daughter was 9, huge meltdowns, burnout and school refusal. We got a diagnosis of ADHD and autism and honestly for a while felt we'd lost our girl.

She has always been prone to nosebleeds and was looking very pale and so we went to the gp who started her on a high strength iron supplement and within about 6 weeks we felt like she was back functioning again. She does need some adjustments day to day but these were a lot easier to work out when she was regulated again.

Recently we had another period of burnout and meltdowns and her bloods showed a Ferritin level of 8 (discussed with gp and despite NICE guidance an ideal for a ND child is somewhere in the region of 50 apparently) so whilst her haemoglobin was fine, her stores were very low and just not replenishing. Would definitely recommend discussing it with your gp and asking for a Ferritin and detailed iron profile* as there's quite alot of growing evidence that links these kinds of episodes with low Ferritin. (not just insta accounts)

(*appreciate this could be challenging especially if she's housebound at the moment ♥️)

Aside from that, sending love and solidarity from one mum to another. Your girl is so lucky to have you in her corner and in answer to your question, yes it does get better but it's so hard when you're in it xxxx

I am desperately frightened.

of course you are, that fear is your love for her. It’s powerful. you can start to take a tiny bit (or a lot) of comfort in that, if you allow yourself too, that your fear is merely (for want of a better word) the depth of your connection and empathy and someone with that much depth and empathy is going to come through like you always have before.

Her two bests friends were diagnosed with autism just before her, which is why she had asked for the assessment herself as they were all similar and struggling. They would arrange to go in for lunch together, she couldn’t always manage it though and the sense of failure and letting her friend/s down would cause a major meltdown. The odd lunch time then progressed to going out for a coffee afterwards and gradually occasionally at the weekends a shopping trip, charity shops and record shops, not chain stores which are often too bright, noisy and crowded. She also has a group chat with several online friends who live around the country who she has now met in person in the last year (with me there initially) and will now happily jump on a train alone to see them, unimaginable after being unable to walk to the corner shop for 2 years!

All 3 of them?!

I must read into it in depth as I didn’t even know about it until this evening. The article seems to say it’s not rare it’s just rarely diagnosed (I think it says possibly 1 in 200?) which is interesting, and scary too if even some symptoms could be made easier with treatment. I feel like her behaviours are completely bizarre, she’s refusing any clothes from the waist down, is in the dark screaming or speaking in an odd witch like voice and is oddly attached to some old rugby top.

This is so kind and supportive. Thank you. Yes bloods would be impossible just now but I’ll absolutely keep this in mind for when she can leave the House (I hope)

This is so so kind. Thank you.

All 3 of them?!

imagine my surprise upon discovering, over a small number of years, that I and most of my family and friends were autistic. Birds of a feather!

Before even reading the responses I thought of PANDAS knowing a girl in my DD’s class who has a diagnosis - it was marked behavioural changes that triggered the initial investigation into it. I’d definitely push for exploring that as a possibility!

You will 100% be eligible for DLA, it’s based on care needs not diagnosis. Definitely do it ASAP as they backdate to the application date. Two years ago I thought I’d need to quit my job to support DS, thankfully I’ve not had to, but I know that in the worst case scenario that if you have DLA and end up on job seekers with carers allowance, there isn’t an expectation to find work as you’re caring for a disabled child. so there is some breathing room. I know it’s not something to aspire to, but there is a bit of a support net there. Massive hugs, I know it’s scary to even contemplate.

Ignore the bloody InstaCrap about the miracle of SEN parenting. I love my DS, am incredibly proud of him and wouldn’t change him, but there’s nothing miraculous about still wiping his bum at almost 9 years old. Or having to support him through a meltdown that he later feels immense shame over. Or having to nag school again about meeting his EHCP. Or trying to scaffold our life so he can do nice things without getting overwhelmed. The posts about it being a sodding superpower really wind me up.

After a meltdown the other day DS told me his autism “was a curse” and I felt like posting his personal view on social media to counteract all that nonsense quite frankly!!!

Early on in our journey I remember crying hysterically that DS didn’t have a ‘proper mum’ who knew how to do all this stuff. Almost five years on I’ve got an EHCP and am the queen of paperwork and chasing shit up. You will get through this, even when it seems so shit. I’ve typed all this from DS’s bedroom floor because that’s my life. I get it. Huge unmumsnetty hugs to you!!

Hopefully this will help ...

https://www.gov.uk/disability-living-allowance-children

This was similar to us. Was just under a year for a remote assessment which I understand many don’t want for understandable reasons, but it worked for us as she’s housebound and the in person assessment wait is was 2.5 years here.

This was so grounding and warm to read. Thank you. Also on floor outside her bedroom. So glad it’s not just me that doesn’t feel that this is the making of us or my uncovered superpower. because it sodding well doesn’t feel like it.

Yes all 3 of them! And every single female friend of hers since starting college seems to be either recently diagnosed or going through the process

Exactly this!

My eldest we always thought had ADHD, very high energy, very low sleep, would up and leave enclosed baby classes etc but actually he was storming, eloping because he was stressed etc. he walked early, talked on time. Talked like a small elderly scientist and still I didn't get it. Transition from nursery to primary caused a burnout, not that we knew what to call it then. It's been year of learning about the situation and about him and low demand parenting to get him to the functioning boy he is today (yet still it's on a knife edge and 1 wrong move from disaster a lot)

The bigger surprise is my daughter, always compliant, eager to please,big upset would take herself off and steel herself. 3 weeks into primary school and I'm called in to talk about her stomping, taking herself off into isolation when stressed and absolutely incapable of asking to go to the toilet. It's been weeks of unravelling it all and SEN teacher thinks she also autistic but an expert masker. However looking back she has always had texture issues with food, been particular about clothes, if upset wouldgrt worked up and struggle come back down, loves collecting things, fears of very specific things other stuff too, basically I've had to rewrite my quiet, compliant girl who could play independently as a child who needs support to cope. Because we've parented an autistic child already she's always been parented in a way that's worked for her so it hid a lot of her issues.

I have a book called take my hand which is written my 2 mums of teenagers, one of the teenagers has cancer and the other has mental health problems. I found it extremely comforting when my now 18 year old autistic son took an overdose when he was 12.

It's so hard and there are a lot of times when you feel scared and alone.

We too were still wiping our son's bum Everytime and he had such anxiety about it, he'll be 9 at Xmas and through incentivising with a ridiculous gift from his special interest we managed to find something he wanted enough to over come the sensory horror. We told him if he could do 1 wipe each time then gradually work up so he was doing a. Full wipe by the end of the month we'd take him for this gift. It was yesterday, twice he's now done full start to finish wipe. I'm so proud of him but also so aware of how mad that sounds with an almost 9 yr old. Take heart it can potentially change.

This happend to my DD earlier this year. Around Feb time she suffered burnout, but there had been signs up to a year prior. Intrusive thoughts, OCD, problems with friendship groups. She is now in Year 11 and I worry so much for her. She's missed so much school, and I'm struggling with work. So many times I have to pick her up due to panic attacks. She had 50% attendance last year. The school was supportive, but only up to a certain level. There is still pressure to have her in. We're on the CAHMS waiting list.

Bloods came back okay, but took 6 months to get her near a needle.

Her moods are all over the place, nighttime panic attacks. I used to cry with sleep deprivation and didn't handle it well at all. Nowadays, I try to be more understanding. Breaks my heart when she apologises for keeping me up most of the night.

She sees a private psychologist, through my insurance, but nothing has changed. No formal diagnosis for autism, although thr psychologist is convinced she was masking. She also is questioning her gender, so I'm trying to go with the flow and just be supportive.

I’m sorry but this is absolutely not true. So many teens are being diagnosed where it just hasn’t been picked up by schools or parents. The transition to senior school and adolescence is a really common time for difficulties to really show and for burnout to happen.

Many parents miss signs of neurodivergence, it doesn’t mean none at all were there. So many parents say they just thought their kid was a bit quiet etc No criticism here btw it’s just reality.

If it's developed over a year it seems unlikely to be PANS/PANDAS as my understanding is that that comes on much more suddenly. That said, there's definitely no harm in further exploring whether that might be playing a role here.

I have twin boys. One was more obviously ND from an early age and was diagnosed autistic at 7. The other always seemed entirely NT - seemed to sail through primary school, great group of friends, sporty, academically able, I genuinely had no concerns about him. He started secondary school and just seemed to slowly 'shrink' (best way I can think to describe it) - by Easter of year 7 he was completely unable to attend school - panic attacks, self harming, depression, anxiety. Soon it started to impact his hobbies and sports as well, he was a shadow of his old self. Both he and I were at a complete loss to explain it. He wanted to be at school but he just couldn't physically step over the threshold. He developed all sorts of sensory difficulties he'd never had before (noise, various textures), all his friendships fell away as they couldn't understand what was wrong with him and why he couldn't go to school or hang out with them. He eventually opened up/admitted that he'd had lots of worries/anxieties and sensory issues during primary school too but he just hadn't felt able to talk about them. He asked to be assessed and mid way through year 9 was diagnosed autistic.

His diagnosis came as a relief to him I think - he was glad to have a reason for why he found school/life so hard and that was a bit of a turning point. We got an EHCP and specialist school and slowly things started to improve. He's in a much better place now although he does still have to pace himself so as not to go back into burnout.

Things which helped us - low demand/low pressure - drop everything that doesn't need to happen (I'm sure you're doing this already), anti-anxiety meds/sertraline (may need to pay a private psychiatrist), CBT (we got this via CAMHS), but more than anything else time - lots of time (he essentially missed all of years 8/9 and half year 10 of school whilst he recovered although we did get some alternative provision during that time) - burnout is tough and you just have to wait it out and let the recovery happen at its own pace.

Besides autism/PANS etc., the poor love sounds clinically depressed too. I would enquire as to the suitability of an antidepressant. It wouldn't transform her life, of course but it could be what is needed to lift the fog, so to speak. I don't believe any child is too young to have depression. Anyhow, that's just an avenue which might be worth exploring.

I wish you both all the very best.