To just accept it and stay in for the rest of summer?

[NoSummers]

Cut a long story short, my oldest is autistic and prone to aggression and lashing out. I’ve tried and tried to take her out, but it’s getting too much for me and I genuinely don’t feel I can cope with taking her out anymore.
The problem is that it can happen completely out of nowhere. There doesn’t necessarily have to be anything that sets her off.
For example, the last time we were on the bus, she was sitting in her seat and absolutely nothing had happened. She suddenly stood up and started screaming and shouting. I went over to her and told her to calm down and that we would get off at the next stop, but she then started jumping up and down, screaming and lashing out.
There was a woman with a pram nearby and I was really worried she was going to hurt someone. Obviously, the bus was moving, so we couldn’t just get off immediately. We had to wait until it stopped and then get off.
There was genuinely no build-up to it. Nothing had happened immediately beforehand. She can just become extremely dysregulated very suddenly, which makes taking her out incredibly difficult because I never know when it’s going to happen.
I’m now at the point where I don’t want to take her out for the rest of the summer. I’m honestly scared that one day something will happen in public and someone will call the police.
I have other children as well, and I can’t constantly be dealing with a situation where this keeps happening with little to no build up.
I feel awful saying it, but I genuinely don’t know what the alternative is anymore. If it means we all have to stay in for the rest of the summer because I can’t safely take her out, then I don’t know what else I’m supposed to do.
Should we just accept this is it now and stay in for the rest of the summer? Shes at an age now where someone will call the police and I don’t want to be dealing with that.

No unfortunately im not working as im her full time carer and driving lessons are £40 an hour here. I considered a wheelchair but shes still scream her head off and we’d have to go home. I think this is it for us 😔

Has her anxiety been assessed? Is there some form of anti anxiety meds that would help? You need to get back on to social care, they need to give you more help even if there’s waiting lists. Has her adhd medication been prescribed? How much funding were you given for the PAs that cancelled - the council must have authorised that so ask what is happening with that money. Get young carers assessments for your other children, this can in some areas open up respite for them also.

What happens if you let her scream and just stand nearby and keep her safe but dont go home. So basically just wait till she stops and then go to the park? Or is there any way you could avoid the pharmacy and do park first then pharmacy? I think you said you have to go past the pharmacy to get there?

She sounds like a very clever young lady who is telling you that she likes going to the shops and pharmacy but doesnt like the park.

It’s opposite the park unfortunately. I have tried to just stand there but she will walk/ run off

I don’t know the LA arranged it. No one will assess her anxiety because camhs refused to see her and said it’s just autism related and she doesn’t need mental health help. GP won’t prescribe anything without a psychiatrist due to her age.

It can't be it because your other children need a childhood. This is absolutely not said in judgement as I 100% know you can't wave a magic wand to transform significant SEND needs but your younger children absolutely need time out the house.

You need to fight all the way for respite and additional support. Contact the right people daily if you have to clearly explaining that your younger children are not getting access to a childhood.

In the meantime, while support is arranged, can your younger children go to holiday clubs to give them some time to socialise and time away from sibling? Sadly it's highly likely that they grow up to massively resent the childhood that their sister led them to have. Again absolutely not said in judgement as you're clearly doing such a lot in really tricky circumstances. Just one to be really aware of as your fighting your corner for support.

Worth looking at charity support for the younger ones perhaps.

No holiday clubs Space now available locally as the free ones are booked up, I didn’t book them in advance as they didn’t want to go to them, they don’t really like them but
now i will for next time as it’s better than being stuck in. I’ve made a request for respite and waiting to hear back.

They are already resenting it my son said he hates his sister.

Public transport can be extremely dysregulating for people with ASD. There's a trait called "fear of being perceived" where you simply dislike being in the same space as other people or just the state of being perceived by strangers requires more mental energy to cope with and can sometimes lead to meltdown.

Many do better inside a car where it feels like an extension of your private home space. Unfortunately this may not be a practical solution right now, but it's definitely something worth considering if the alternative is that the entire family cannot leave the house.

A car is arguably not a luxury but a necessity since you can't put a price on the emotional damage siblings may ensure if one child cannot cope with public transport.

I can’t afford lessons unfortunately its definitely a luxury for me living in London.
it would help a lot but not something I can change right now

I would consider myself very high functioning ND but I absolutely despise public transport! It's exactly what you described, it's the "vibe" and overall feeling of being surrounded by people and having to arrive at a destination (a station or bus stop) and your journey is still not over. I think it's a combination of fear of being perceived and the energy required in making endless transitions. As soon as I got my drivers license I never stepped foot into a single form of public transport again. I only do it out of sheer necessity when in a foreign country which seems ok since that's counterbalanced by the novelty of being on holiday. But I've only taken local public transport less than 10 times in the past 20 years.

MH support can be included in the EHCP. Is it? Was it part of the appeal?

What therapies are included in the EHCP and does it include time to work indirectly with you/professionals?

If DD runs off, have you tried a harness?

She doesn’t just run off she lashes out at people around her so it wouldn’t be safe to keep her out when she is overwhelmed , shes better at not running off now but if I refused to go home im sure she would just run back but we usually just go straight home so that stops it usually, just have no choice but it. Yes it does mention her health anxiety in her ehcp but there isn’t any therapy related to it, she sees a speech and language therapist through school and occupational therapist.

Is there no MH therapies in the EHCP? Was that part of the appeal? All needs should have corresponding provision.

Does the SALT and OT include any indirect provision?

I didn’t mean a harness to keep DD out when overwhelmed. I meant to ensure she stays safe in the meantime. The fact she lashes out is even more of a reason.

No and I would be worried they’d try to push her down the SEMH route when her primary need is autism and I didn’t want her in a SEMH school. Maybe people will disagree with that but I have my reason and her primary need is autism.

The SALT and OT is not indirect and she was discharged from both services once she got her school place.

We had tickets for the zoo booked for today I booked them weeks ago as I still try to take her places despite the difficulties but now we won’t be able to go so thats that money gone! She said we’d go “after you take me to hospital”

Having therapies in the EHCP doesn’t mean the child’s primary need is SEMH. That grossly misunderstands both therapies and SEMH. Many DC whose primary need is autism have therapies in their EHCPs.

At the next AR I would aim to improve the SALT and OT provision. It needs to be in F and it needs to be direct and indirect provision.

They were already trying to use her behaviour to push her down the PRU route, I told them that wasn’t happening and she was not being place in a PRU.

SEMH and autism go hand in hand a lot of the time though

But merely having therapies in the EHCP doesn’t change a child’s primary need.

I wanted a special school not a SEMH school though they are different schools. Special schools won’t take children whose primary need is SEMH they will say you need a SEMH school.

But perhaps her primary need is SEMH? You know her better than us but I'd stay open minded to an SEHM school as it sounds like she does have significant SEMH needs

SEMH schools are special schools. They are different to e.g. a generic SS or an ASD SS but they are still special schools.

In the vast majority of cases, an autistic child’s SEMH needs are secondary to their ASD so, for most autistic DC, their primary need is not SEMH. Although that doesn’t mean there can’t be therapies in their EHCP.

Educational psychologist didnt agree and said her
primary need is autism.
Anyway she has her school now and I Will not send her to a SEMH school.

Thats why im not getting anywhere with CAMHS they say it’s autism related and the letter stated that it relates to her autism hence not being able to help, they said as she isn’t suicidal or self harming it’s not their remit.