Autistic Women Assemble! #2

[Nepmarthiturn]

Helloooo lovely people, a new thread for a us to continue to chat and connect with other autistic women (small talk and word mincing not required). 😊

As before, anybody newly stumbling upon this is very welcome to join us (even if still awaiting diagnosis). But we'd be grateful if others could leave us alone please, like the NT man we encountered in thread #1. 🤣

Agatha Christie books have no sex scenes whatsoever.
Many people have noted that very few married couples in the books actually have children.
I'd avoid Hercule Poirot's Christmas. It's a little bit gorey.

@TheShellBeach thanks! I guess because I’ve always seen them as ‘adult books’ I was concerned that they may not be appropriate!

I love Agatha Christie world, even though it was in reality class-driven and snobbish. I like the idea of bustling around a picturesque village in my tweed ‘costume’ whilst muttering and solving dreadful crimes - ones involving curates, mysterious young women and possibly covens that meet by night in the lower meadow……

More annoying posts today. Some of the NTs on MN grind my gears SO bad.

Hello all! All very quiet around here...

How are you all?

Sorry I've been AWOL for a while. Been having a horrible time, kids really struggling to cope with school. 😩

More and more I just think the world is mot designed for us and that no matter how hard we try it's like trying to swim in treacle.

If anyone has some happier recent stuff to share then please do!

Sorry to hear that @Nepmarthiturn it's so hard for them going back after 6 weeks of freedom, is it just generally having to go back or are there specific issues they are struggling with? I'm so thankful DD is out of school now, although I still have to battle the LA when it comes to providing everything in her EHCP. I got so fed up with the caseworker I ended up re-writing the entire EHCP and told her this is how we are doing things and pointed out why my version was better and voila better EHCP with appropriate outcomes etc.

DD has started her online diploma and she's doing really well, her attitude to learning has completely turned around thanks to her old specialist provision. If you'd have said 2 years ago that today she would be churning out top-quality work off her own back (without me or someone else on her case) I would not have believed it.

Now for me, I'm sure everyone remembers how much I got screwed over with my team project? Well the next project that came up I went solo, I couldn't face another team so soon! Well, my project was picked as 1 of 3 of the best out of nearly 100. So that cemented the idea that I might not be so bad at this and it was the teams bringing me down(plus I've spoken with a few others who have had similar issues with their teams). I have another opportunity coming up next week and again I have to make the choice of going solo or doing it in a team. I hated having to present my work and the thought of doing that again fills me with dread but then so does the idea of working in a team (but the advantage is that I can get someone else to present) so I'll have to mull over what to do.

@camelCase that is fantastic! It's especially great to hear that after you having such a negative experience with the last project (I do remember your posts about how stressful it was!). I do often think working in teams can be very challenging, particularly if you have very domineering people, or very lazy people, or very extroverted people who want to "catch up" constantly when there is actually nothing new to discuss, or people who don't keep to deadline, or people who are severe victims of the Dunning-Kruger effect, oooor.... 🤯 people are a nightmare in general (with a few lovely exceptions)! 🤣 So pleased this went so well for you and that has restored your confidence that it wasn't you that was the issue.

That is great to hear how we your DD is doing. That must be such a relief after seeing her struggle.

I am really at my wits end with our school. My children are still small. Both have a diagnosis and the school has recently been reviewed by Ofsted and their report stated they are particularly strong on support for SEND kids so I really don't understand what has been happening.

My older one has just started YR2 and is struggling a lot with social relationships that are getting more complex and with having to spend much more time sitting at a desk all day. They know from his diagnosis report that he needs support with these things, and we've had OT involved and they said he needs extra support with handwriting, and regular movement breaks and regular breaks each day outside the classroom because of sensory overload. But none of it has been implemented.

Last year one child started to try to exclude him from games with their group of friends and they chased him and kicked him hard in the stomach and hit him. He is so gentle so was shocked and so upset and scared to go back to school. Somehow no staff witnessed this (although other kids did) and they didn't even check he was ok afterwards, then he broke down about it at home to me. My view is that if something would be an HR issue if it happened to me at work or a police issue if it happened to me in the street then a child should not have to tolerate it either. The excuses that were made about how it was a "game" (when they'd specifically said he couldn't play with them anyway so how is it a game?) were unreal. And some of these kids have form for punching, pinching, bruising other children, yet where was the supervision? If it was like that in YR1 then what will it be like by YR4 say, if school don't stamp it out?

And he struggles with executive function, and they set tasks and then tell the children to complete these by the end of the week. But for him this is very hard because he forgets. I have suggested a visual chart where he can mark which days he plans to do the tasks so he is still taking responsibility for it and prompt him to check it sometimes, but he needs the tools to learn how to do plan and organise himself. I mean, I am an adult with a professional job but I manage my own issues with executive functions with extensive lists, meticulous and detailed calendar reminders, and still drop the ball. How would a 5 year old with diagnosed issues with executive function be expected to magically do this? He was getting extremely distressed about it all every night saying he will never get it done because he forgets. I spoke with his teacher and she just shrugged and said "he needs to learn responsibility" which is not the issue at all: if he didn't feel responsibility he wouldn't be crying about it at bedtime! He needs to tools to help him actually do it, it's not that je doesn't care.

And other things like he struggles to eat quickly so often can't eat his lunch so is starving hungry and coming out of school distressed about that, too. I have been raising this for two years now and they still don't give him any extra time or make sure he has eaten enough. How can he learn when he's starving?

He went through a stage last year of refusing to go, shutting himself in his room and banging his head on the wall. It's so sad because he is a sponge for learning and so kind and empathetic it's unreal. He made me a little heart out of strawberries and grapes the other day and brought it to my study as a snack while I was working. But is saying he can't cope with school and wants to stay at home because they won't meet his basic needs for some breaks.

It's very frustrating because he is super smart. He is 6 now and doing lego kits for 18+ year olds, he came up with Descartes' "Meditations" on his own, and the Fermi paradox. They are not challenging him academically, not pushing him with the areas he excels at or supporting him with what he struggles with and because he isn't disruptive and is meeting academic targets they don't care if he is distressed because he masks it when there.

My daughter has just started Reception and it's a very similar story. She is summer born so I delayed her start for a year as there is no way she would have coped emotionally last year. She was only managing two days of nursery at that point. And I wanted to get her diagnosis and support in place first.

We had meetings in the summer term between me and our nanny and the school SENCO and the nursery manager to agree transition arrangements and adjustments she will need. I met with her class teacher as well to explain the adjustments. Then she has started and it hasn't been implemented. I am not asking for the moon on a stick, just regular breaks so she doesn't get overwhelmed, but they haven't done it, or given her the support aids she needs to concentrate (I offered to send these from home but they said no need to, they have them).

I spent all summer boosting her confidence and getting her excited about school. And in two weeks they have trashed it. I told them over and over again about her masking and that they cannot presume she's ok because she is acting fine. The toll of this comes later, usually with a total meltdown once home. But it's got so bad she's had a couple of meltdowns in the playground at collection time which her teacher and the Head and the SENCO have seen. Yet still they haven't implemented the adjustments! They said they wanted to "see how she does". 😡 I've gone to huge expense and spent all this time on making sure she'd have the support from the start because if she decides she hates school that will be game over. I told them this. She isn't an experiment. We know what works, it's in the diagnosis report and has been tried and tested already by me and nannies and nursery and all communicated to them. They have seen the distress it is causing, yet still do nothing.

I have spoken to the SENCO again in person and had a call with her and another call with the Head and emailed multiple times and spoken to her class teacher but they are still not meeting her needs, which again I am not asking for much. I have said either you can meet her needs so do so, or you need to say you can't and then I won't send her. What you can't do is say you can and will and then not do it and cause this level of distress. It's not ok, you have a duty of care. Her masking does not mean she is fiiiine. 🙄

It's so upsetting because she is just like me as a child and I went through school with no diagnosis or support and still suffer the mental health impact of that now and I did everything possible to prevent this happening to my children, and yet here we are. I really do not understand what they are doing. I have asked for another meeting, but we've had so many and it's all been spelled out again and again so what else can I say to them?

I feel so let down. She feels trapped in the classroom. All the work I've done with both kids on emotional regulation etc is being undermined because they are not allowed to use their coping techniques and leave the environment before they get overwhelmed, and I am telling them X, Y, Z will happen and then it isn't in place so it's destroying their trust in the school staff, and me.

She's been telling me she is different to the other children and she's not ready to go to school and doesn't want to go anymore. So sad.

And just the same as with my son, for this 6 hours of daily distress, what is she learning? She knows all her phonics etc already and the nursery manager told them they will need to support her with sensory issues and social issues but push her academically, and she's coming home with colouring and having traced a letter over dots when she can write all of the letters already. So what is even the point of it?

But I can't home school them because I have to work. I can't afford private school with smaller classes which would probably help. I need to start the EHCP process for both and have said this to school, as their needs will only increase as social relationships get more complex and demands increase as they move further through school. At least then the school will HAVE to do what is agreed. I am so shocked that they agreed all of this but haven't done it.

I can't see either of them managing mainstream secondary, but have no idea really how any of this works and our Council are generally obstructive to any type of support. 😑 I feel terrible sending them into an environment that I know is very stressful for them and not meeting their needs socially, emotionally, sensorily or academically. But then there don't seem to be many schools for ASD kids with sensory and social support needs that also push kids academically? Even if we got EHCPs in place, I can't see what provision for their needs actually exists?

Sorry for scaring everyone off with my brain dump!

How is everyone today?

I scan read your post & all I can say is follow your instincts - my dd struggled more and more through primary kept getting told “she’s just abit anxious” by age 9 she was refusing to go to school, at 10 we got private autism diagnosis and finally at secondary school they listened and by 11 she had a EHCP. They are all bits of paper that just help you push for “reasonable adjustments” legally but the reality is mainstream big schools are just not set up for neuro diverse kids. Do have a read up on Dr Naomi Fishers blog / talks / books, she talks a lot of sense. A EHCP can - with a great deal of difficulty- unlock EOTAS - education other than at school - package of education outside mainstream if a special school isn’t the right place either. No one helps you find all this but there’s many face book groups for parents sharing advice. Good luck it’s a bumpy ride when you have fab amazing kids that don’t fit in square boxes.

First of all you didn't scare me off @Nepmarthiturn , I tackle these issues day in day out in my voluntary role, I wanted to wait until I was on my laptop so I could break things down properly.

Ofsted etc is not reliable, the mainstream college DD went to is seen as a great college, they have a whole thing about extra support for those who are ND..absolute lies. DD wasn't even there for half a term and was suicidal because they refused to follow her EHCP. We were very lucky that there is a local specialist mental health school that absolutely changed her life, I just wish they could help more kids. Also, the reason that support isn't happening for your kids is money, it always boils down to money. Even with an EHCP schools/colleges will try their best to avoid anything that will cost them money (or that they think will cost them money). Having said that I absolutely recommend starting the EHCP process now for both of your kids (you don't have to wait for the school to do it you can do it yourself). Please have a look at this link it will guide you through doing a parent request for an assessment - https://www.ipsea.org.uk/ehc-needs-assessments Also as @Wishingitcolder said an EHCP opens up a lot more education options other than just mainstream.

For evidence to go in with the assessment request, your posts are a very good start but I'm sure you can add a lot more.

For your son;

Struggles a lot with social relationships (you could summarise all of the problems he's had with the other kids) and the school is not implementing any strategies to assist him with his social skills (or tackling the nasty behaviour/violence)

Struggling to sit at a desk all day, OT report states regular breaks including movement breaks but they are not happening

Extra support with handwriting is needed but is not being offered

Struggles with executive function but is not receiving reasonable adjustments, even with cost-free suggestions(like the visual chart) from you they are not implementing anything to help him

Struggles to eat as fast as the other kids, and requires extra time, no adjustment is made for this result is that he is hungry and unable to concentrate properly

Is not being pushed academically, he is bored as they are not willing to adjust the work to his level

Point out that because his additional needs are not being met he has school refused in the past and he is at risk of this becoming a regular occurrence, especially as he grows and the demands of school life increase.

For your daughter;

Delayed start to reception due to emotional disregulation, point out that emotionally she is behind her peers and vulnerable, mention that her excitement for starting school has turned to dread and anxiety due to needs not being met. All the work you have done on emotional regulation is being undone.

Adjustments that were agreed during the transition meetings are not happening, such as regular breaks and support aids, meaning she is having even more meltdowns at home but has had them during school. Point out that she is very good at masking so for her to meltdown whilst still at school shows how much she is struggling.

School staff were told by both yourself and nursery staff that she required support with sensory and social issues but needs pushing academically as she is beyond her peers already and none of it is happening.

She feels trapped in the classroom and has no trust in staff, she is on the cusp of school refusing already.

The way the school has reacted to everything is screaming red flags to me(assuming same school for both kids?), is changing schools a possibility? See if you have a local SEN parent forum and find out from other local parents which schools actually try to help and which to avoid (same with secondary get ahead with that now).

As you have another meeting coming up over your daughter you need to get legal with them. Point out to them that they are discriminating against your kids by not making reasonable adjustments. NAS has some info and examples that may help - https://www.autism.org.uk/advice-and-guidance/topics/education/resolving-differences/england/disability-discrimination

Do go in with strategies that won't cost them anything (or hopefully take too many resources) so it's not all negative. Say you get it, it's difficult trying to accommodate 30+ kids needs with just 1 teacher, so here are things they can do that will help your child(ren) without being a drain on resources. For example things like movement breaks are such a simple one to implement They could ask your son/daughter to do things like give out/collect work books, that's a movement break that gets them out of their chair without being disruptive.

Also ask them if they are doing assess, plan, do review, if not, why not, your children have diagnosed special educational needs and that is a standard practice.

If you want anymore specific advice drop me a PM, I'm so sorry you and your kids are going through this, unfortunately, this is how the system works, they let our kids struggle and develop MH issues before they step in, all to save themselves some money. Silly thing is if they just put simple things in place from the get-go they wouldn't end up with such traumatised kids which then costs them ridiculous amounts to provide education/support.

Oh and see if you have a local SENDIASS service, just type into google your area and then sendiass. Get in touch with them they will be able to help you with all of this, they can even come to meetings with you. Schools and LA normally get their act together when sendiass get involved.

Thank you so much, this is all very helpful. I think for secondary EOTAS may be the best answer. There is no way they will thrive in that kind of environment. But for now they need to be in school and I do think with support they could manage it. I agree, I can see we will get nowhere without an EHCP for each so will start that. I'd hoped by getting their diagnoses in place already it would be taken more seriously but there is a lot of talk and no action. I have come down on this very firmly with school and stated they are not meeting the children's needs and this is not acceptable because it is causing them a great deal of unnecessary distress. I will look up SENDIASS. I definitely need help. I am totally burned out already just trying to work plus care for them alone and endless battles the last few years to get their diagnoses, with social services and CAMHS trying to get support, etc.

Also so depressing to hear that even with ECHPs in place schools/ colleges aren't complying with them! I thought at that point they would because they get extra funding to meet the needs set out? What are the consequences if they ignore an EHCP, given it is a legal requirement to follow it?

I do need to get this sorted out because it won't actually be that long before I need to get plans in place for secondary, especially as younger one started at CSA therefore I will need to apply for her in YR5 then defer again. And only 4 years away to apply for my son.

I had thought early primary would be the smoother part. I expected more problems later on socially and with increased demands and knew secondary would be a disaster in mainstream but I'd thought while they are little this part would be ok with some small adjustments, so it's very worrying for the future that it's such a struggle for them already.

Where is everybody? 🤣

I think we all went AWOL at the same time. I hope not a mass burnout. 😐

Hi Nep! I'm still here.
Going mad today and brain totally scrambled
I had to buy a new phone. When I phone people on the old phone, they cannot hear me.
But I'm going out of my head, trying to work things out on the new phone. I'm having a rare meltdown, actually. Tears, and needing a glass of sherry already.
Send help. I am distraught.

I've been super busy trying to get applications sent off, including ones with multiple long-winded steps that are really annoying me. I seem to have had never-ending meetings as well. Some absolutely enraged me as it was clearly a box-ticking exercise (local authority wanting advice about re-structuring part of their local offer and MH site) others were actually really useful (tech one yesterday evening). I have another tech one later today (and have to decide whether to do the next project solo or in a team) and then the rest of the week should be a bit calmer.

Did you reach out to sendiass @Nepmarthiturn ? They will be able to help you and hopefully it will be enough to give the school a kick up the butt. How are the little ones doing now?

Unfortunately, there is no comeback on schools/colleges for not following EHCP's, I found this out the hard way. Our caseworker at the time(the only one who was decent) was horrified and completely stumped. I had to get the senior manager of the SEND team involved and all that happened was DD was given the go-ahead for the super-expensive SEMH school. The mainstream college had no consequences, this is something I'm battling for everytime I'm in meetings with the senior people at our LA because if schools had to face consequences for their (in)actions then I think they would be more open to supporting our kids.

Also, schools have to pay around the first 6k(I can't remember the exact figure) out of their own budgets for any support. Hence why they are reluctant for EHCP's(legally binding) and try to downplay anything that might be needed in case it depletes their funds.

And I sent that message from the old phone. BT promised me the old number would appear on the new phone but it hasn't.

Oh no, this sounds horrible. Why do these things never come with instructions?!

Sherry is a good idea. 🥂

@camelCase that sounds so busy. I hope the rest of your week is calmer! Do you think you'll go for a solo project again - after such a better experience with that last time - or another team one?

I haven't contacted SENDIASS yet, but will. I am waiting to speak to SENCO later this week (she is part time which does not help). I spoke to the Head. I have said I want to start EHCPs. That is appalling about the schools having to pay the first £6k with no extra funding. Where are they meant to magic that up from, when the total basic funding per pupil per year in primary school is less than that? The cynic in my thinks it has been set up that way on purpose to discourage schools from supporting pupils applying for the support they need.

The whole thing is rotten to the core. And I totally agree with you re. comeback. A law is pointless if it is not enforceable, and with no consequences of course it won't be enforceable. Ironic that schools say parents should ensure children understand consequences for behaviour yet they are happy to exploit a situation where they can behave appallingly because there are no consequences. That certainly needs to be changed, with schools and local authorities fined very large amounts of money for breaches which is then distributed to charities supporting disabled children, every time an EHCP is breached. Ditto "children's services" and their complete refusal to comply with statutory obligations.

So, six hours later, I have figured it out, but it has taken years off my life.

I'm so sorry you're having this never-ending EHCP trouble.
I gave up trying to get one for DS.
It was many years ago now, and even more difficult then, I think.
Two of my DC weren't diagnosed until adulthood.

Hahaa! Glad you got it figured out! I hate technology malfunctions. I have been trying to figure out s problem with my children's tablets not saving things to their SD cards then saying they have no memory when the SD cards are correctly installed, formatted and empty. 🤯 This kind of thing causes soooo much stress and all instructions for electronics seem to be videos (that I don't want to watch) or random diagrams with arrows and symbols, like people have forgotten that words were invented because they enabled better communications than cave paintings! What's wrong with writing it in actual, intelligible sentences?

Thank you. It seems like a never-ending battle to get any help for them at all, even very basic stuff. It is exhausting. I'm sorry you had the same experience: it seems like things have not really changed much. 😕

How is everybody? TGIF!