Pre-Teen DD, new ASD Diagnosis and school refusal

[Lionfilm]

I am looking for some advice please! DD is 12 and has recently been diagnosed with ASD at the end of last year. Now I dragged my heels about getting her assessed (for a variety of reasons - all of which I have mentally beaten myself up about since her diagnosis and regretting not having done it sooner).

Now with the diagnosis at lot of her behaviors make so much sense - and whilst I have a better understanding of where they are coming from I am struggling to deal with how to put things in place to help her.

My biggest issue currently is school refusal. It was an issue for a while before the diagnosis, but hadn't made the connection. I read over the weekend that with girls and ASD school refusal can become quite common due to ASD burnout once the expectations of school starts to ramp up.

Is there anything I can do to help her with this? is there anything I can do that will prevent ASD burnout? I work from home a couple of days a month and was thinking that maybe I could allow her home on those days - and maybe get some buy in from school for a few little bits of work she can do at home? or is that a really silly idea?

Its a major struggle as I am a single parent who works full time (dropping hours is not an option financially) and getting out the door of a morning is really starting to get very stressful and I just want to be able to help her.

Any suggestions will be gratefully received!! :)

What support is school providing?

Does DD have an EHCP? If not, you should apply. If she does, ask for an early review. An EHCP can provide support such as OT, SALT, MH therapies which will help. If the school isn’t the right environment it can also fund provision at a different type of school or alternative provision or EOTAS.


If DD can’t attend school full time the LA must make suitable alternative arrangements as well as part time school/instead of school (depending on DD’s needs). This should begin once it became clear DD would miss 15 days. The days don’t need to have already been missed or consecutive.

On the financial side of things, have you applied for DLA?

We can all look back in hindsight and wish we had done certain things differently, but you did what you thought was best at that moment in time. Dwelling on regrets doesn’t help, you can’t change the past, focus on the future.

@Lionfilm In my experience the attitude of the school will make a big difference. My DD couldn't cope in her very large, high-expectation school and crashed out in Year 10 with burnout. She had several months off before choosing to find another school. Both schools are independent but this new one is small enough for the teachers to know the pupils well and they are understanding of her issues. Pastoral care is the reason why many parents choose it.

She is full time but if she just can't make it in time she goes in later and they are fine about it because she works well when she is there. If there are things she finds difficult ie group work with kids she doesn't know they are understanding and work around it. She skips Games which is last period one day and that gives her a bit more of a rest/chance to do homework. If occasionally she needs a day off, we don't make a fuss about it because she'll only ask if she needs it.
I'm sure your DD's ASD report comes with recommended accommodations, so ensure the school are fully on board with them. Unfortunately some schools are just completely uneducated with regards to ASD so be prepared to tell them exactly how it impacts on your DD.
We were lucky to find the school but it shows to us the difference in attitude that can make school a possibility.
At home, we lay off any expectations regarding chores etc and just concentrate on helping her have the energy to get to school. I don't know about the EHCP route as she doesn't need one at this school but it all depends on each child's difficulties. Lastly move on from the guilt, I went through it with two children - concentrate on supporting her now.

Our school has recently given DD some work around a including a toilet pass so that she can go when she wants, access to the disabled loos so that she doesn't have to go into the main loos when they're full, a pass so that she can leave lessons 5 minutes early so that the corridors aren't full and she can skip games too. The last one I'm not worried about because she's super fit anyway.

Have the school talked to her about which bits she's finding upsetting?

I don't know if @JustKeepBuilding can help you in this one? I don't know of a video but we started discussing other family members "quirks" and how they'd probably get assessed if they were at school now.

@PritiPatelsMaker I have already replied to the OP.

Sorry Just. I really do need to read things twice these days 🤦‍♀️

@PritiPatelsMaker you don’t need to apologise, I just didn’t want you thinking I had ignored you.

Many thanks for taking the time to reply. We are not in UK so not sure what an EHCP is (we are in Ireland so I feel sure we have our own version!).
I've had a meeting with school last week - it was an unmitigated disaster. First of all the principle said she was amazed that the bar for diagnosis was set 'so low' and that based on that 'every child would have a special need'!!!! that kind of set the tone of the meeting tbh.

DD is exhausted with school, and i am not sending her in on days she isn't up to it. School have said that academically she isn't struggling and to that end they cant 'justify' providing resource hours for her (yeah I know school is crap but she's coming to the end of 5th class and our choice of secondary school has an ASD unit and a much better understanding of ASD and all that goes with it (I know this because DS (15) is also ASD and goes to this school (and also had issues with this same primary school, though school refusal wasn't an issue for him then).

sorry I'm rambling a bit..

I am struggling with getting my head around all of this. I do understand that DD feels overwhelmed at times (often) and that causes her to shut down. I don't know how to communicate with her, about what causes this for her. Obviously I don't ask her while she is overwhelmed and try to gently ask when she appears to be in a better place/not overwhelmed. On occasions she will answer, but mostly she wont (she has always been a poor communicator and ofc now I see that this is due to her ASD), but I don't know how to help her if I don't know whats causing the overwhelming (and in turn this makes me feel like the worlds worst parent because I want to make her world less confronting but have no idea how).

We are going to see the GP next week for referral to Psychology services (she will likely be an adult by the time an appointment comes through) and we are also applying for assessment of need (but need the GP to sign off on this) to better understand what her needs exactly are.

I am also awaiting on an appointment with the employee assistance people at work because I know I am not coping with any of this!

I am also awaiting on an appointment with the employee assistance people at work because I know I am not coping with any of this

I hope that they're able to help you @Lionfilm

Your Dd does sound similar to mine. I used to think that my Dd was being awkward and refusing to tell me how she felt because she was either overwhelmed or she couldn't be bothered trying to verbalise how she felt.

I've since had a revelation. She can't actually tell me how she feels, the language and understanding of how to express herself this was is simply missing. She has been referred to SLT who can hopefully help with this.

Has your Dd been seen by SLT?

It is shocking the principal said that. In future follow up any meeting/phone call with an email so you have a paper trail of evidence.

Much of my post won’t apply then. An EHCP is a statutory document that sets out a child’s needs and the support they require. It used to be called a Statement of SEN, and that is what it is still called in NI. I don’t know whether Ireland has an equivalent version or whether there is still the duty to provide education for those out of school. I don’t know whether it is the same in Ireland, but here being academically able isn’t a lawful reason to refuse to provide SEN support.

DD may not know herself the whys or she may but may not be able to communicate that or how she thinks it’s best others communicate with her. If you could get OT and SALT assessments that would help.