Autistic pre-teen daughter - help!

[LannaL]

My daughter is starting secondary school in September, and she has recently been diagnosed as autistic. She's very bright, and most people we know don't seem to believe she's autistic - she can mask it well.

I've wondered for a while if she might be autistic (I am neurotypical but have an autistic sibling - who is similarly good at masking), but it all came to a head this year with anxiety over moving to secondary school and increasing social complexity, and it became clear beyond a doubt, as shown by her diagnosis.

But... now what? I had honestly hoped that by getting her diagnosed (which she has embraced), and educating myself and her about autism, that this knowledge would help her to feel less anxious and stressed. I thought we could put in place strategies to help her self-regulate, and to give her more sensory breaks in the day, and that she'd be calmer and happier. But the reality is that she is now having very regular autistic meltdowns, the likes of which she didn't have before. I think this are largely autistic meltdowns, although sometimes I think these sessions also have an element of pre-teen hormonal rage too.

I tell myself (and her) that it's not a bad thing for her to express her stress and anxiety physically (she is crying, thrashing around, kicking out, etc). I'm terrified by all the warning stories I've heard about autistic teenage girls who internalise these stresses. Getting it out does seem like a better option, and she usually seems much calmer after one of these meltdowns. But at the same time, I am REALLY struggling to know how to handle the meltdowns. I have tried staying with her, but it doesn't seem to help her at all (if anything, it makes things worse), and I find it so emotionally draining. I am now trying to be nearby, but basically to let it run its course. But this isn't really working either - she makes so much noise that her little brother can't get to sleep, and she can get so violent in her thrashing around that the entire house is shaking. Then I feel I have to step in and put some boundaries in place so that she doesn't hurt herself or trash the house. But she reacts very badly to this. After each meltdown has calmed down, I try to ask myself how I could have handled it better, but I honestly don't know. And the toll it is taking on me of going through this on an almost nightly basis has me pretty close to breaking point. I don't know how to manage the situation so that she can still have a healthy release of her upset while still looking after the wellbeing of myself and the rest of the family.

I'd also really like to find more ways for her to self-regulate and to not get to this point in the first place. But I suppose that's a whole different thread!

Anyway - I'm really at my wits end, and feeling like my neurotypical brain is a massive disadvantage in knowing how to help her. But I know we need to find better ways to manage this.

Please, lovely mums of mumsnet, have any of you been through similar and have any advice for me?

It sounds like her needs aren’t being met. Have you heard of the coke bottle effect? She is holding it all in at school but the effort of doing this is too much and it all has to come out.

Her sensory needs are possibly not being met but, in addition, socially and emotionally she is possibly also struggling more and more.

Just because school don’t see anything doesn’t mean that they don’t have to do anything about it. Speak to the SENCO and also consider a EHNCA. She should not be in this level of distress every day.

I second @ApertureFraperture’s post. What support is the school providing? Do they have anyone who can offer emotional literacy support/Zones of Regulation? Do they have a nurture group or anyone running sensory circuits or drawing and talking therapy? If school was easier, home life would improve too. Definitely request an EHCNA. On their website, IPSEA has a model letter you can use.

Have you spoken to the secondary school’s SENCO? Is DD receiving an enhanced transition?

What are DD’s eating and sleeping like?

Keeping a diary to spot triggers and prevent escalation in the first place is useful. Some find sensory toys/equipment, a trampoline or punchbag helps with self regulation.

Some people find The Out of Sync Child and The Explosive Child books helpful. If it is something you are interested in, Scope offer mentoring to parents of DC recently diagnosed.

It's great that you're trying to find a way to help her process and release.

For the meltdowns I find distraction and humour can often help (if DD's not already in orbit). Sometimes as she's ramping up/'rumbling' and looking for a fight/release/trigger, I try to find something funny (not about her or me) - a stupid impression, or literally making a fart joke. She really latches on to that and maybe I have to talk in fart noises for half an hour, which is better than the meltdown. The iPad is an excellent distraction and very calming pre-meltdown.

But yes, as others have said, it would be good to look at the root of her distress, which sounds like is school. An EHCNA is a long process but will mean school has the funding to put useful things in place, but I think the EHCNA will only be valuable with really strong guidance from you on what DD needs. It was only when I had a breakdown in the office and said she'd pulled a knife on me cos she really didn't want to come in that school properly understood and kicked into action, after years of me trying to act like the wheels weren't falling off.

Definitely seek out a proactive ally in school, whether the SENCO or someone else. I find I really have to drive the whole thing by saying very clearly "this is what we experience at home, these are her triggers and sensory needs, and she will have days off when she needs it."

@ApertureFraperture is right about sensory and social needs. Did you get an OT to do a sensory assessment as part of the ASC diagnosis? We paid for it privately (about £400 I think) and it was the most useful part of the whole diagnosis.

One day at a time, you're doing great.

OP doesn’t need to know what DD needs now. The aim of the needs assessment is about understanding DD’s needs and the provision required. Provision in EHCPs is taken from the evidence anyway rather than from parents.

Thank you all for your responses - that already makes me feel less alone.

You mention EHCNAs - is the goal of those to get an EHCP? Both her current school and the psychologist who diagnosed her told me strongly that she won't get an EHCP because she does so well academically. Is that right?

School have been pretty decent, but the timing of her diagnosis makes it tricky, as primary school are nearly finished with her, and secondary don't know her yet (and I don't fully know what her challenges and triggers will be at secondary yet). I have met with the SENCO there, and she does indeed feel like a strong ally for the future. She has suggested various measures which I think will help, although my daughter is struggling with the balance of wanting things that will help her versus not wanting to stand-out / be treated differently (and she refuses to identify herself as having "special needs", although she absolutely does have them).

@ApertureFraperture I hadn't heard of the Coke bottle analogy before, but that is EXACTLY what she's like after a day of school.

@BrumToTheRescue A trampoline could be a good plan, I had to stop her swinging because she was swinging so furiously that the climbing frame started coming apart! A trampoline might be a better way to allow big movements in a safe way! I'm also going to find out more about the Scope mentoring thing, I didn't know about this, but it might be exactly what I need!

@sleepworkmum I will try the humour approach - although I'm not sure I can keep up fart noises for half an hour! 😂Impressive!! I don't think we did get a sensory assessment - there was a section in the diagnosis about sensory issues (classed as severe in most cases), but this didn't tell us anything we didn't already know (and gave no suggestions for helping), so I wonder if the assessment you're talking about it is a different thing? Really good to hear that was so useful - I will look into this!

Thank you all again for taking the time to reply to me and share your hard-won wisdom on this. It really makes a big difference.

Yes, the goal of an EHCNA is to get an EHCP. Schools often (always?) push back in the first place on that, and your school's reasoning is faulted. She is definitely eligible for an EHCNA, there're lots of good posts on this on MN.

Two other very quick thoughts:

1 - I've found that we got much better support from SEN charities than from local authorities. Most is free, some is paid. In West Sussex we have Reaching Families and Aspens which we've used a lot and they have been GREAT.

2 - I've heard about autism specialists - not coaches but therapists or OTs - that work with you and school to get the best set up possible at home and school, maximising EHCP funding. If you DM me I can send you a link to one I've been recommended (she's pricey and local to Sussex, but a good example).

An EHCNA is the needs assessment you first request as part of the process of getting an EHCP. It is about gathering advice and information to better understand DD’s needs and the provision she requires to meet those needs.

Academically able DC can get EHCPs. They are about more than academic ability. Unfortunately, some schools incorrectly tell parents their DC won’t get or don’t need an EHCP, but the parents go on to successfully request an EHCNA themselves, even if they have to appeal. Some HCPs also don’t understand the legal tests.

Many areas no longer offer sensory OT on the NHS. If you request an EHCNA and the LA agrees (or is forced) to assess, one can be included in the needs assessment even if your ICB no longer commissions sensory OT.

Our trampolines (we have an outside one and a mini indoor one) are used daily by DSs to help them regulate. You could look for a swing specifically designed for sensory integration. They are more costly but are worth it.

You will be told all manner of things: her needs aren’t severe enough so she won’t get an EHCP, she doesn’t meet minimum criteria for us to refer you to that service, she is complaint at school and EHCPs are only given to the kids that are flipping tables, we can meet her needs etc etc. The bottom line is that the law says that the threshold for getting an EHCNA is that a child may have SEND. Your child has autism so she definitely has SEND even if she is academically able. If the LA says they won’t assess appeal. If they assess and then say they won’t issue a plan, appeal. If the plan doesn’t say what your DD needs, appeal. The law is on your side. You just have to enforce it. (Which is easier said than done at the best of times let alone when you have a child falling apart in front of you, so buckle up, it is going to be a bit of a ride.). If you can afford it you may find that private OT, SALT and EP will help. If you can only do one EP is generally the one that is recommended. If you can’t there are charities that can sometimes help.

Find the IPSEA website. It tells you how to go about all this without all the spin the LA puts on it.

If your child continues on as she is she will, in all likelihood, end up not attending school at all with very poor mental health. Push for the support now, despite what professionals may tell you, before the wheels have properly come off.

Whilst you go down the EHCP route do keep on at the school in the meantime. It is a long road, and you can stop working on all the things that could help now. Keep on good terms with the school if you can.

Hi OP,

Things I have learnt from my recent experience is:

An EHCP will only be issued if the school can’t meet her needs without one.

A mainstream primary school may have been able to meet her needs without an EHCP but it doesn’t mean a mainstream high school can due to the significant difference between the two types of settings e.g. size, number of teachers each child has, the way lessons are delivered.

In order for the school to apply they have to go through a long process of evidencing what they have already tried and tested to meet her needs. It is just quicker if you apply yourself, as you don’t need to do all of that, you just need to apply directly to the LEA (although they will of course then go to the school for that evidence but at least timescales are then in place and the school is focused).

During a meltdown the child is highly emotionally aroused, and whilst you may want to help by talking it through with them, or giving them a hug, what they may actually need is for you to be there quietly and be close to them but not touching.

I am only learning though, so this may not be accurate or applicable in your circumstances but hope it helps

In order for the school to apply they have to go through a long process of evidencing what they have already tried and tested to meet her needs.

LAs and some schools like to claim this, but they really don’t.

You can get an EHCP even if the school are meeting DC’s needs without but only because they are providing provision in excess of what would typically be ordinarily available provision in state MS.

Alongside exploring an EHCNA/EHCP and trying to work closely with the school, there have been some great recommendations on sensory needs and stress relief and you're doing a great thing in being proactive, @LannaL.

Thank you all SO much for the advice. I realise now that I had allowed myself to be fobbed off too easily on the EHCNA/EHCP front! It's so tricky when you're coming into this with no prior knowledge of the system, and you take the "official" word as gospel. I'm just starting to realise how broken the system is, and how much parents with ASD children have to battle the system to support their kids. Hats off to you all for everything you have been through already, and thanks for helping to point me in the right direction!

I think I'm going to have to get her started at her secondary school in September and see how things go and what the main problems are, and then I'll gird my loins and go into battle down the EHCNA/EHCP route. Wish me luck! 😬

Learning early that some professionals don’t always tell you the truth about matters relating to the SEN system will save you a lot of stress further down the line.

EHCP support thread no. 3 - www.mumsnet.com/talk/special_educational_needs/5077140-ehcp-support-thread-no-3 please join us here. A lot of us have been where you are.