I’ve realised my DD 9 has mild autism and she is becoming more volatile - what now?

[BumboBaggins]

Me and my husband have come to the realisation after many months and years that our DD 9 definitely has autistic behaviours, some ADHD traits and some PDA. She would be at the mild end of the spectrum (ok at school, does have friends etc) so I’m unsure whether it’s even worth pursuing a formal assessment as she would never qualify for an ECHP?
She masks very successfully all the time at school and generally gets on ok academically and behaviourally at school. Socially she is alright ish although her need to be right / argumentative nature can mean she can struggle sometimes. After school she then tends to explode at home and her behaviour is becoming increasingly volatile as she is getting older. She has started throwing things at me, pushing me and says very spiteful things when dysregulated. Obviously I am her safe space and I do my best to help her but I don’t really know what im doing, how to manage her and am becoming worried that her behaviour is only going to worsen as she gets older / bigger. (Eg. Today I asked her to do some homework and she was angry that she had lost a game on her iPad, then angry about coming off the iPad, then angry about the homework so threw all her stationery at me, screwed up her homework book, threatened to screw up her brother’s drawing). Her predominant emotion is anger, all the time, over extremely minor inconveniences. I am the focus of any anger she experiences. She repeatedly tells me I love her brother more than her and that I don’t like her. Nothing I do is ever enough even though I bend over backwards to try and please her and keep her happy, often to the detriment of my other child. This is ignored or not noticed. I walk on eggshells constantly for fear of triggering her and yet there will always be something (praise is often not well received so I feel stuck between a rock and a hard place as to how to make her feel good).

My question really is, I don’t know where to turn or who to speak to or if there is any support at all? She doesn’t require any SEN help at school although I have made the SENCO aware and she is on the watch list, but I doubt anything will come of that as she masks very well. Can therapy or counselling help? If so, what am I asking for? Can a GP help?? Is it just a case of getting on with it and thanking our lucky stars that we don’t have it any worse? I feel like I need some strategies for dealing with her behaviours but where can I turn to for this support other than the internet or forums like this?! Sorry so long 😞

Sounds like my 11 year old. There’s no help and a diagnosis will be years away unless you pay privately

I would seek an ASD assessment. The school or GP will be able to refer. You could look at right to choose.

I think a diagnosis is important for understanding yourself and others understanding you.

DD isn’t OK in school. The school might not be seeing it, but she isn’t ’fine’ at school. What you are seeing after school is called the coke bottle effect. As sometimes called after school restraint collapse. It signifies unmet needs at school. If school life was easier, home life would improve too. Request a meeting with the SENCO. The school should be providing support. Support in schools is based on needs, not diagnosis. You can get EHCPs for DC who mask at school and explode at home.

If homework is a specific trigger, you could look at adjustments to that. For example, some DC don’t do homework, some only do some of the homework, some work for a set time then stop whether it is compelled or not, some do homework at school.

Some people find the book The Explosive Child and the Out of Sync Child helpful.

The autism spectrum isn’t linear with mild at one end and severe at the other.

So sorry to hear this it sounds really difficult. Definitely ask school senco to help you get a referral for ASD assessment.

in the meanwhile, look up “at peace parents” on Facebook or instagram. She is immensely helpful with ways to manage PDA behaviours and helps you understand/frame it as a nervous system disability. Your child can’t help but get activated into threat fight mode when she senses any loss of control, equality etc or if a demand is placed upon her (eg homework, or even praise is felt as one). Theres no easy solutions but it’s about trying to ‘-accommodate” where possible and give her control, reduce demands etc, to enable her to be activated less and thrive more. Exceptionally hard though, sending much strength xxx

You may also find the PDAsociety org uk parenting tips helpful. I’d agree though she’s not fine in school and the behaviour you’re seeing at home will eventually appear at school probably in secondary school years. Seek a right to choose assessment now for autism but do keep speaking to the school. A diagnosis doesn’t change anything but does start the process in understanding her. If your DD likes to read you and her may like to read the 4 books by Libby Scott including “Can you see me” describes the real life experiences of a young girl growing up aged 10-13 who is autistic in mainstream school initially. My DD really related to them and it helped us talk about the things she was struggling with.
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I would try and get her on the waiting list for ASD/ADHD assessment now - I know of several cases with girls where the wheels came off around age 13/14 as social and academic expecations of secondary school ramped up. You don't want to be just beginning the assessment process at that point.

Thank you everyone. I will try and get her on the wait list for an assessment in the hope that they may eventually get to her in the teenage years. It shouldn’t be like this should it. What a totally broken system (but that’s a whole other post). And thank you for the recommendations too. I will look into those.