Is this just a difficult age for behaviour or is this ASD/ADHD and PDA?

[pdaautismadhd]

Is 6 just a very difficult phase / age or is it due to ASD adhd and pathological demand avoidant profile (dd also has a diagnosis of ARFID).

Every day is just screaming. I’m not sure if it’s reaction after school and weekends to masking somewhat in school (although from what they tell us she is often like this in class) she gets hungry too as won’t eat there at all so maybe also that. I’m just wondering is it also just the age in general to give me some hope things may settle a bit at some point ? Or is it her conditions and this is just how it is. I’m exhausted.

Can you give some examples of what makes her scream? Have you tried any strategies for her to communicate what's wrong when she's upset? Why doesn't she eat at school?

One of mine used to get 'hangry' and I made a deal with her, when she was calm, that if I said 'eat' she had to eat whatever I put in front of her mouth, and if I said 'drink' she had to drink it.

The not eating we think is a combination of arfid but also due to adhd she just can’t seem to manage to eat as is so restless ? She’s surviving on so little it worries me. The screaming most of the time we have no idea , she is not very verbal at all. We have picture cards but it’s hit and miss if she will use them. I think it’s the PDA that is causing so much frustration as even the expectation of having to do something that is required eg if I so much as look at her coat in the morning when it’s time to go to school it’s starts . Often will wake up screaming and we don’t know why. She has also developed a habit of ‘freezing’ she will (I think when overwhelmed) just stop and stare ? Standing or sitting it’s like whenever she is when the feeling hits that she’s reached her limit she just goes like a statue.

We have referrals to CAMHS, SALT (was previously under them and discharged), waiting for educational psychologist as well but the wait for everything is months and months.

It sounds like both!
When we did our parenting course, the trainer explained asd as 'delayed and disordered development' and how different bits if development could be mismatched at any age. Children around 6 develop a lot and expectations at school increase. it could be a stressful time for her of socially, emotionally or communication wise she wasnt in that place.

In terms of food, can you take the demand away at home and just leave a grazing area of safe foods she can pick at as and when. It wont help at school. My son was 14 before he ate at school as it was to overwhelming.

6 is a difficult age, if in y1 then very different from early years and much more learning, if y 2 then that's increased too....
I work with a PDA child at school and we try to keep everything as low demand as possible and always give choice.
they don't like the overwhelm of noise and transition periods so they have the option of eating out of the lunch hall / working outside of the classroom if they want. They have access to their lunch box and can eat whenever they need and whatever they want. ADHD meds helped hugely for them.
I'm also a parent to 2 potentially adhd/ ASD kids. (14 and 16) One has a diagnosis adhd and we are waiting for the other assessments. Low demand works for us, and routine. Youngest cannot handle perceived slights / being told no - think it may be RSD. oldest is super anxious and sensitive to sensory stuff.
it is exhausting and not much fun often.
sending you a big hug because it's hard!

School does seem to be a huge trigger I think it’s just far too overwhelming. I feel selfish as I’m a sahp really I could home educate but I’m so reluctant to do that as I don’t think I’d cope. I need the break each day.

@pdaautismadhd the parent guilt can be overwhelming can't it?! You 100 percent need your downtime too, and to look after your mental health. You are doing a lot of co-regulating I imagine and it's important that you give yourself the space to recover from that - it's hard!!!

Also, work with the school to see what adjustments they can make for your child. You might need to make the suggestions yourself. I'd be delighted to take on board any suggestions that a parent thinks would help a child at school.

Is she at a mainstream school OP?

Yes and we are in the process of trying to get an EHCP but I’ve heard that can take a long time

Oh bless her, no wonder she's struggling so much! I think she would benefit hugely from being at an SEN school with much smaller classes, much more understanding of her issues, hopefully a set up where she can eat lunch etc etc Being hungry was never good for DS (ASD) when he was young. His ability to cope was always hugely reduced.

Definitely don't take her off register OP, I think she probably just needs to be somewhere much better suited for her. As you're a SAHM would it be possible for her to have lunch at home? DS did that at this age and it helped him so much as he didn't have to deal with the unstructured craziness of lunch time playtime - it would also mean she's be able to eat something.

Where are you in the EHCP process?

What support is the school providing? What have they tried that hasn’t worked? If your area still has such a service, have they asked for advice from the specialist teaching service? Has DD ever had a sensory OT assessment?

Has the school tried DD eating safe food (even if it isn’t normally allowed in school) in a quiet room away from the main lunchtime hustle and bustle?

The freezing - has she been assessed for epilepsy at all? It’s highly comorbid with autism and what you described sounds a lot like an absence seizure.

We did consider this but school were reluctant saying she will get used to it and it would confuse her. I might try it anyway as it’s not currently working at all

I hadn’t even thought of this I will ask the gp. I assumed it was overwhelm and shutdown but it’s probably worth getting an opinion as it’s a really big problem

I think it’s a shocking indictment of SEN education that you’re being left so unsupported. For a pre verbal child with behavioral issues like this to be forced into mainstream and still have no EHCP at 6 is appalling.

OP please tell me you’re claiming Carers Allowance and DLA at least.

What does her paediatrician have to say? Where are you up to with the EHCP? Have you looked at specialist provision in the area? If not, start viewing and asking questions right now. Usually you’d need an EHCP to name them as a placement but it’s within their gift to accept children if they have space and can see the EHCP on the horizon.

Also get on to the SEN team at the council and make a polite and persistent nuisance of yourself until they explain what they’re doing to provide their most basic statutory duty which is an accessible and appropriate education for a child of compulsory school age.

Youre going to have to sharpen your elbows OP, and fight hard but really, there’s no other option.

With respect, you shouldn’t have to guess and assume this stuff. I don’t know your financial situation but if you have access to private cover then get in front of a paediatrician pronto, ideally one experienced in neurological disorders.

How is she with toileting and also with other forms of communication?

DS's school weren't very keen either but it helped him massively. She might be confused at first but it will probably soon become her new routine if it's consistent. Having a break in the day refreshed DS so much.