Can someone reassure me that it gets better?

[onlytuesday]

My DD is 13, recently diagnosed autistic. Her behaviour is so volatile and unpredictable it affects the whole fmaily and I often feel at a loss what to do with her. My OH says we need to discipline the bad behaviour (in our house that means taking away priviliges like her phone, computer time etc), and I agree but it's so hard to know what is autistic behaviour and what is teen strop that we should be disciplining. I'm so conscious I don't want to discipline her for something she cannot help that I tend to avoid doing so.

I had an occupational health appointment at work this week because I often am late for work if she's refusing school or have to dip out in the midddle of the day to deal with an incident at school. The nurse was really understanding and kind but she said to me teenage autistic girls are hard work and we would be in for a rough ride over the next few years. That sent me into a bit of a spiral that maybe it's going to get worse before it gets better.

I feel quite alone with it as apart from my OH no one really knows what she is like at home and how challenging it is. What keeps me going is thinking that it will get better and we are doing everything we can for her in terms of getting her the right support. But I just don't know how much longer I can keep going juggling work and the rest of the family with her needs as well and I worry I may need to give up work completely if this doesn't get better

It has definitely got better for us. My DD was diagnosed when she was just 16 and at that point she seemed to get so
much worse.

She’d always found school difficult and would ring/text me 50,000 times a day to stress out at me about school/someone sniffing in the class/someone eating noisily/friends annoying her blah blah blah. The diagnosis seemed to make her more autistic. She was all of a sudden unbearable to live with. Hypersensitive to things she previously managed okay. It was awful, we felt like we were walking on eggshells all the time, she dropped out of college, it was awful.
Anyways, we took every bit of pressure off her, no college, no job, she learned to crochet and basically spent 4 months in her bedroom.

It’s hard to say whether it was this total nothingness is what helped, or her starting to take sertraline for her anxiety, but she’s different girl now. She still has the occasional meltdown but is far more reasonable than she ever was. She now has an EHCP and is going back to college in September to start with just one A Level.
I really feel for you. We cut out unnecessary stress at school for her things like PE. I still don’t know whether forcing her to go was the right thing to do. She passed her GCSEs but probably at the expense of her mental health.
Sorry for such a long reply. Be assured that in our case, things have definitely got better beyond all recognition x

Things can improve, especially with the right support.

What support is DD receiving? Does she have an EHCP? How often can’t DD attend school?

The diagnosis seemed to make her more autistic.

Or she felt she no longer had to mask or was unable to continue masking due to burnout.

Thanks for the replies. We have struggled to get the right support in place at school, she is now on the SEN register tho and they are implementing a package of adaptations. It won't be until September really that we see if any of it helps and she's always a nightmare going back after the holidays so I don't think it'll get better straight away.

No EHCP as yet but I went to an NAS meet up a few weeks ago and a couple of parents told me to just go for it as it's worth it in the long run? I'm hesitant though as it looks like you need to gather a huge amount of information and there's no guarantee that the school will actually implement it?

Do request an EHCNA. The initial threshold you need to focus on is relatively low - a) has or may have SEN, and b) may need SEN provision to be made via an EHCP.

If the EHCP is written correctly it must be provided. If it isn’t you can enforce it.

You can the EHCP yourself. School doesn’t have to do it. I was lucky. I have a fantastic friend who used to work in SEN department at school. She was used to reports EHCPs and she helped me. SENDIAS are brilliant and they can help you too. They have a standard letter template that you can use to request a EHCP.

Be careful with SENDIASS. Some are good, but too many repeat the LA’s unlawful policies.

You have a diagnosis - that’s good because your DD can now get some much needed help.
The thing that worried me reading your post is that (as my parents did when my DS was diagnosed) you’re kind of dividing your DD’s ‘autistic self’ and non-autistic self. Your DD is autistic. Her behaviours will all be because of her presentation of autism/her personality…..just as your DH’s and your behaviours are because of your personality.

You can’t separate her into naughty behaviour and autistic behaviour!
The ‘teen strop’ will have happened because her autistic needs are not being met. Try to see your DD’s behaviour as coming from a place that is either supported or not supported. If she ‘acts up’ (how you would see that as acting up), think about how her autistic needs can be better supported.

Read up on Zero Demand Parenting - and get your DH in on it too - although it will be hard to get to start with. It means that you won’t ask her to do things that will seem to her like a demand. Lots of parents have had great success parenting their autistic kiddos in this way - it can really help reduce the child’s stress.

Punishing her by taking her technology will probably not work. If they are things she uses for relaxation and stimming it will be like chopping her arm off.

Autistic children don’t need punishing - they need understanding and different ways of parenting.

@onlytuesday I very much agree with @verbena17.
If anything like my daughter she has got to come to terms with her diagnosis and also process a lot of the trauma she's already experienced especially from school. It's not bad behaviour, it is more likely to be her way of saying she isn't coping. I'm glad you have a package of accommodations negotiated with school for September.
My DD was diagnosed age 13 and it was clear she didn't really understand what she was feeling, never mind able to tell us what the problem was. Unfortunately my DD ended up leaving school for 6 months in order to have some time out (we also overlapped with the pandemic which didn't help). I would say to read up on autism for girls, try to understand what her triggers are and accommodate them rather than punish her. Perhaps try to find a counsellor who actually understands autism and what she is going through. She need to accept the diagnosis (my daughter didn't want to) and understand herself better. We moved our DD to a much smaller school with better pastoral care but even now it is still difficult. My autistic son however absolutely thrived when he went to uni (despite a breakdown when 16) because he was much more in charge of his life. School can be terribly difficult - mine both found there were too many rules they found difficult to follow.

Thanks @Verbena17 and @VMJ1 for your thoughts. I have come across zero demand parenting and I can see how it might work. I need to understand a bit more about it though. My OH struggles more with her behaviour as he thinks she's being rude or disobedient, which on the face of it she is. He therefore feels that she needs to know there are consequences to her behaviour as you would with an NT child. I'm more willing to let the little things go but I think he is coming round to the understanding that punishing her doesn't work, indeed has never worked, and we need a different approach

Literally, as soon as we stopped treating melt downs and bad language etc as ‘bad behaviour’, it all stopped. And I mean all of it!

He was and is still suffering from very high anxiety but we know exactly how to limit his anxiety now and know that the majority of his ‘behaviours’ were simply due to being unregulated, anxious and simply not able to verbalise how he felt.

Zero demand parenting really does need the entire family on board and whilst it’s really hard to begin with, you have to stick with it. It won’t be long before your DD realises you’re working with her, not against her.