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?

What do you suggest, the OP picks up her daughter who is naked from the waist down and chucks her out the front door?

These type of comments are clearly not helpful to the OP who is trying to keep her daughter alive. School is a problem for another day.

Everyone saying PANDAS is missing that the girl wouldn’t have got an autism diagnosis without many earlier signs (which the parents previously dismissed as just being a sensitive child/personality etc). An NT child doesn’t end up with a random diagnosis.

I work in CAMHS and regularly do ASD assessments and to be NICE compliant, there needs to be something in the developmental history - this can sometimes be more subtle with girls, but if not present at all, I would question the diagnosis.

Did your daughter have any intense interests, intense friendships, perfectionism or black and white thinking as this is often common and not picked up as signs of being autistic, but can be related.

I’ve seen young people with a PANDAS/PANS diagnosis, but parents have often spent a lot of money chasing a cause, with little change to the outcome and long term treatment, so be cautious

It sounds like you need a team around you and wondering if you have been referred to Early Help? You need the combination of mental health, education and social care to start making some change - and definitely EHCP with possible EOTAS package to start. It is a fight, but see if your local area has someone who can advise about SEN as this can be helpful - or reach out to other parents online (local Facebook groups etc.)

And take care of yourself, it sounds tough

That is not my experience of the diagnosis process. It was length and rigorous. Based primarily on two two-hour long specific child assessments over which I had no input and wasn’t even allowed to be in the room.

i don’t think posts like this one are from people who have actually been through nhs diagnosis with their child

No we don’t have an EHCP, I’m not sure it’s worth going through the process with her being out of school. I’m not sure I have another battle in me.

It isn’t funded, I have to pay for everything, her DLA goes towards it. There is a great home education community where we are and a lot of the groups and classes are free or a minimal amount. She has tutors for core subjects, and we have a subscription to an online platform that follows the national curriculum. We are “lucky” in that my husband works from home (own business) and she is very self-led with her online learning. I work evenings and weekends while studying for my degree, due to qualify next summer but the profession I’ll be going into is shift-based so I’m hoping I can make it work.

I appreciate that home education isn’t possible for everyone, and believe me I would much rather my daughter was able to attend school and go in happily with friends, but this is the hand we’ve been dealt.

Ive sat in on around 25-30 ASD assessments over my career as the corporate parent. But of course you have the actual parent there sometimes, more often than not actually

I cant tell you how often the actual parent does not tell the truth about the lived experiences/trauma experiences of the child in the way that the courts/social care have found, minimising their own contribution to parenting of the child in negative ways.

Now of course its different perhaps because these are children who are not in the care of their parent for a variety of reasons, but this alone is enough to tell me that the certainty that people hold diagnoses in their heads, is flawed to say the least.

@likelysuspect what is a corporate parent and why is this relevant here?

Did she ever seen extremely tired after a social event, rather the energised? Eg after a play date would she take herself off to read silently for 2 hours? Or did she ever have days after school in early primary where she was explosive for the first hour after she got home eg over the wrong snack or something

I find this narrative a bit strange tbh. I don't see how a young child can mask. A 2/4/6 year old gives in to every whim and emotion. Surely it's older children/teens who would mask?

So if there really were no signs previously, then I'd wonder if there's something else going on. Vitamin/mineral deficiencies can have a surprisingly dramatic effect on behaviour. Or a traumatic event, perhaps at school, could lead to a break down. Or hormonal imbalances kickstarted by puberty.

I don't know, I'm not an expert. But I think the saying 'if you have a hammer, everything looks like a nail' might be true here. Doctors are trained professionals but they can still make mistakes. I would dig deeper, do my own googling, and get second/third opinions.

Wishing you all the best.

a 6 year old would absolutely mask, less so a 2 year old
but they want to fit in and be the same as their peers at 6

Hi OP my DD is autistic, she was diagnosed age 11, and if i didn’t have experience with autism i would never have noticed the little signs when she was younger, she too had a massive personality change around that age, went from sweet and shy to throwing chairs and screaming at her teachers, refusing to go to school, massive attitude- it never became physical but she just looked at me with so much hate i could see she wanted to hit me, was heartbreaking, like you there was no help, we just had a diagnosis and was sent on our way with some leaflets, we did manage to get her into school, thankfully the high school here has an autistic unit within the school and what they called a nurture group and they slowly introduce them into the mainstream school, but there was still many arguments and tears before and after school, to be honest im not sure when/how it all changed but she slowly came back to us, she is now 16 and goes to college, mostly back to her normal sweet self just with a bit more fire, i also have an autistic DS who is 11 now and is going through the same thing- he does get physical though, has even hit his bus escort and teachers (he is more severely autistic with cognitive delay ) i honestly think its puberty, i don’t think autistic children cope with the hormones of puberty well (lets face it it is hard for NT children let alone children with mental health difficulties) i know it is hard but patience, and gentle encouragement but also some forceful encouragement is needed too, if you never get them to push past that comfort zone (staying in their room in their pjs) that will be their lives because they can’t push through it by themselves, it is hard, i have spent many days in tears, worrying because ive pushed DD to get up and get to school and i would get phone calls in the day from school with her crying down the phone saying she hates it and wants to come home, it is so so so heartbreaking but she is glad she did it because now she is doing the college course she always wanted to do and has made some good friends in college, it does get better ❤️‍🩹 its just a long hard road there.

@Blanketsandcandles
I went to see a functional doctor (who is also an NHS GP) after years of suffering from chronic fatigue, after NHS doctors couldn't find anything wrong with my blood tests.
It was costly (£1200k, 5yrs ago) but worth every penny. I'm sure some people would say functional doctors might be quacks but that certainly isn't the case. They follow an evidenced based model and often have traditional NHS doctors come to them for advice with their own health issues if traditional means haven't worked! Functional doctors are trained to look for root causes rather than just masking symptoms (which is the NHS model unfortunately).
Physical deficiencies/infections can often mimic psychiatric conditions. I would explore the functional doctor route is you can afford this? 🙏🏻 Perhaps set up a go fund me page if necessary? I'm sure between us we could help with this.
I'm so sorry OP. It's sounds horrendous. You have some good advice/support on here and hopefully we can hold your hand through this 💐🫂

They want to fit in and could attempt to mask, but my point is that a 6 year old isn't good enough at emotional/physical regulation to successfully keep masking up full time at school and at home. I don't understand how any young child can be a "master at masking".

If a 6 year old tells a lie or is trying to keep a secret or keep up any sort of pretence, they generally fail pretty quickly or have numerous 'tells'. So how can a 6 year old successfully copy others' behaviour so perfectly that even with hindsight the op can't think of any signs?

I just don't think it makes sense when considered alongside child development and what kids that age are actually capable of.

This is true - many parents just plainly do not recognise more subtle signs of autism or adhd or ocd etc.

op have you spoken to her primary school teachers from each year to find if anyone else saw signs but didn’t mention them to you?

However, I’m actually very shocked at how many people are saying their kids were diagnosed with autistic burnout, despite having zero signs, because they have burnt out/broken down. Even people who are autistic but capable of masking to this degree can have a breakdown without it being to do with autism.

Kids can have whole lives going on at school that they never tell their parents about. They can be bullied and you don’t know. They can be being SAd by a family member, and their parents don’t know. They can have a teacher humiliating them and parents don’t know (or believe them). Or they can have never dealt with the death of grandma and have death anxiety, which becomes morbid thoughts, which becomes depression. There’s so many things that can build up to cause this breaking point.

At some point this comes to a head and they break down - maybe you’re eleven and a combination of pre puberty and stress collide. Or you’re 15 and people think you’re just being a teenager then it gets bad and you end up drinking and self harming and pregnant. Or you’re 23 and you’re doing drugs and sleeping with strangers and going no contact with your parents. Assigning it to autism doesn’t address the underlying trauma or stress build up. Even if there was indeed autism being masked.

And why autism? Sensory issues don’t always equal autism. Adhd and ocd can both present as this and ocd behaviours are fiercely hidden by kids, has op been given any ACTUAL understanding of any of these conditions? How is she meant to know what she is looking back to try and find? If she has no experience of them, maybe she missed behaviours or maybe she didn’t but how would she know?

and 100pc PANDAS needs to be ruled out. And this sounds incredibly extreme and sudden. Writing it off as ohhh she was so good at masking now it’s dropped and she’s burned out is not good enough frankly.

I agree with most of your post, but PANDAS is not something that you can easily rule out, unless there was a clear infection associated with the change in behaviour. I have known a lot of parents chasing a PANDAS diagnosis and having multiple scans and spending large amounts chasing a cause, without any change to the outcome.

It is common for autistic girls to present to mental health services in early adolescence- however, to meet diagnostic criteria for ASD there has to be something in the developmental history, even if this wasn’t previously picked up by parents or school.

I think the term masking is often misleading in early childhood and it is better to be framed as they were able to cope relatively well, especially if everything is managed well by a parent who has made adjustments to meet their needs - but this falls apart as the complexities of life become increasingly difficult for the young person to manage. Modern life is one big sensory overload that relies on you being able to tolerate almost constant change and this is incredibly hard for some young people

In our experience, dd got very adept at masking as she got older. But when she was a younger child, quite often teachers and schools dismiss behaviours seen as "age appropriate" and something they'll "most likely grow out of". I well remember speaking to dd's reception teacher about some of the things we'd noticed, which she dismissed as "within the range of normal at this age". She went on to say that the only things she'd noticed were that dd liked to lead play, which sometimes caused conflict, and that she had trouble sharing because she'd witnessed her going around the play kitchen, taking all the toys and stuffing them in a suitcase which she put in the oven. I tried to explain that she had a habit of 'containing' things at home when she was anxious about something and needed to make order out of things. She looked at me like I was growing two heads, and repeated that dd struggled with friendships due to her inability to share - something she put down to lack of socialising during Covid (as a key worker, dd had been allowed to contrinue attending her childminder's during Covid, where she continued to mix with some other children). The same school's senco put my dd's inability to wear shoes and socks on some mornings (to the point where she'd prefer to walk barefoot even in the rain) was simply "she just doesn't like wearing shoes, lots of children prefer to go barefoot".

It's pretty easy for anyone who has experienced this to understand exactly why girls who are bright and otherwise appear capable get missed. The parents often feel gaslighted or turn to introspection in the false belief that their parenting is to blame.

Incidentally, the reception teacher I spoke to now has a grown up child who has changed her gender, has severe mental health problems and I strongly suspect is ND herself. Undiagnosed.

My heart goes out to you .Reading it seems like a duplicate of my DD! She too was a happy child and made friends easily .Slept a lot as a baby.Few problems to 11 when started Secondary school.She hated periods and was in a lot of pain.This seems worse in ND children . I home educated her . Also have a Son who was the opposite! loved school .excelled and lots of friends .She always wanted to see her best friend . but hasnt really got many friends now .and struggles with working . 20 years ago Autism not really acknowledged and very isolating .PP upthread saying children should be made to go ! How exactly does this work then ?

We went through a period with my DS when he wouldn't go out of the house due to anxiety and he asked us to push him under a car. He was 9.

We did as well have to make a medication change but it was basically extreme anxiety. After we got over the acute part we started using anxiety therapy measures which are largely exposure. At first we used rewards he agreed on but actually that wasn't as effective as this book:

https://www.spacetreatment.net/manual-and-books

Autistic burnout is not very well defined and a lot of researchers think it's actually a form of depression, which is totally understandable, but for which the best treatment is activity, however small at first.

With your DD I would read through the first few chapters of that book (don't make any changes at first), but for the moment just don't respond/reply when she shouts at you. Do your best to keep calm but don't engage in argument/try to talk her down.

This sounds similar to my current situation but not as extreme as daughter is still attending school. I feel like I’ve lost her, she never leaves her room, don’t recognise her anymore. When I read about autistic burnout she ticked nearly every box but I never suspected any ND before this. She is being prescribed SSRIs this week by CAMHS and I’m praying it helps as the stress of dealing with it is affecting the whole family.

Thing is 'activity' can be something that is a personal interest, like crafting - the key is to ensure it's child-driven (something they enjoy doing), however small. With dd, it was dance videos (the physical movement of dance, coupled with the creativity of editing videos). Slowly, her world began to expand again until eventually she was able to leave the house in a very controlled and manageable way. We built up from there.

Whether it's autistic burnout, depression, or trauma, the same approach tends to work because the most important thing to encourage is felt safety.