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Here you'll find advice from parents and teachers on special needs education.

Could this be autistic shutdown?

13 replies

ontheedgeofwhatever · 23/10/2024 10:42

I could do with some advise please

DS is possibly autistic. (well in my opinion he is but he's undiagnosed we're waiting on it)

At school and sometimes at home he says that he suddenly finds he can't do anything. It's not that he doesn't want to but that he literally can't he just freezes and has "lots of bad thoughts and can't do anything else" He says sometimes he tries to write or type and it's as if he just can't move. I've observed that he also often physically jerks just before this happens. We sometimes (increasingly often) get work sent home from school because he's simply not done a thing.

It often happens with tests... I really don't think he's making excuses because he can easily do the work if they let him try later or he brings it home Of course he's getting lots of behaviour marks because teachers just assume he's being defiant.

(before anyone suggests it, I don't think it's absence seizures because he still seems aware of what's around him and he knows its happening)

Is this some kind of shutdown or is something else at play here? I just don't know but I'm really worried.

I'm sorry this is so confused

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ontheedgeofwhatever · 23/10/2024 10:48

Just to add he's 12 in year 8.

OP posts:
BertieBotts · 23/10/2024 13:03

Yes I think it could be? I don't know a huge amount but didn't want your thread to go unanswered.

I've been reading this book recently called Big Baffling Behaviours by Robyn Gobbel - she describes two different "pathways" that the brain can go into when it detects threat, which can happen just with build up of stress/overwhelm for ND individuals.

What you describe sounds similar to what she refers to as the "Possum Pathway" (the other is "Watchdog" where the child may display oppositional/defiant or aggressive behaviour).

It's basically a user-friendly way to describe Polyvagal Theory, with the Possum being a metaphor for the Dorsal-Vagal state and the Watchdog being a metaphor for the sympathetic nervous system.

At 12 he might find the Possum/Watchdog/Owl explanation a bit too simplistic but honestly I found it useful as an adult and easier to follow than the Polyvagal stuff - even though I have read a bit about Polyvagal theory too. Would definitely recommend the book as a good introduction, it's quite a quick and easy read too.

With the physical jerks though it probably is worth asking your GP about the possibility of seizures - I don't know if seizures always mean a lack of consciousness? But the GP can refer him for tests I think. And it would be useful to have this recorded as well just in general as it will likely add to the picture for any kind of ND or mental health assessment.

If they are not seizure related they could be tics which is also a sign of stress/overwhelm and can be related to neurodiversity.

BertieBotts · 23/10/2024 13:05

In fact the NHS description of tics said if they are accompanied by feelings of anger or depression ("bad thoughts"?) then it's definitely worth seeing a GP. And doubly so with the fact these episodes are causing him to get into trouble at school.

https://www.nhs.uk/conditions/tics/

nhs.uk

Tics

Tics are unintentional, fast and repetitive muscle movements. Find out how long they last, when to get medical advice and how they can be treated.

https://www.nhs.uk/conditions/tics

BusMumsHoliday · 23/10/2024 13:31

Whatever it is (and I think it could be autistic shutdown, yes), the approach of punishing it as bad behaviour isn't working, so school need to try something else. Have you had a meeting with the SENCO about it?

Do they offer anything else when he isn't able to work? Going to a quiet space? A movement break? I would also keep as accurate a record as possible of when they happen: which lesson, which teacher, what time of day, what type of class, what was the classroom environment like, had anything else stressful happened that day.

I agree with going to the GP, too, just in case it is neurological.

ontheedgeofwhatever · 23/10/2024 14:18

Thank you - we are meeting with the SENCO later this week to discuss a referral for an autism assessment I am certainly going to bring this up with her although I think she already knows.

Poor DS he's a lovely kind gentle boy and actually quite bright underneath it all. His last CAT score for maths was 132 , English I think 115 and his reading age is 16 and a bit but he's struggling so much it breaks my heart.

He says he's bored... but at the same time he's falling behind it's awful

Of course it's all fuel for the *** bullies (sorry didn't want to set the internet alight with obscenities they've made his life a misery and I'm sure that's making him worse)

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EndlessLight · 23/10/2024 14:49

I agree with previous posters, I would want to rule out other causes, but, yes, it could be related to autism/autistic shutdown.

What support is the school providing? They should be providing support now, not waiting for a diagnosis. Does DS have an EHCP?

ontheedgeofwhatever · 24/10/2024 18:15

It happened in 2 lessons in a row this afternoon. 2 behaviour marks and now they want him to do a detention - I'm refusing it thankfully senco backing me up He's hardly freezing up then running out the room and bursting into tears for fun is he? They can give him as many "bad attitude to learning" marks as they like but it's not going to make him better. He basically missed the whole afternoon of lessons because he was so upset and no one really understands why... even him.

SENCO phoned me at the end of the day saying he was in her office in floods of tears and so upset she couldn't get any sense out of him. dp had to go into school and get him

Hoping this meeting tomorrow starts to get us somewhere

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ontheedgeofwhatever · 24/10/2024 18:19

He does not have an ECHP and I'm not sure about how to get him one - I asked school and they just say I can look into it... I'm sure they should be helping me... we don't know what to do

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EndlessLight · 24/10/2024 18:23

You can request an EHCNA yourself. IPSEA and SOSSEN are charities with lots of helpful information about the SEN system on their websites, including model letters you can use to request an EHCNA. The school should be supporting DS/you, but you don’t need them to agree to you requesting an EHCNA. It will also help to read the SENCOP.

At least the SENCO has seen sense over the detention. The school shouldn’t be punishing DS like that for his disability.

Make sure you follow up today’s events with an email.

ontheedgeofwhatever · 25/10/2024 09:50

Thank you @EndlessLight absolutely bamboozled by all the acronyms I can see that Google is going to be my new best friend.. why do they have to make it so complicated do t they think we have enough to battle already?

Just had a lovely email from one of his teachers saying how pleased sje is that he's gaining some confidence in her subject and even managed to do some of the last assessment and she can see how hard he's trying. Made me cry it's si lovely to have some positive feedback

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EndlessLight · 25/10/2024 10:56

Lovely to hear some of the staff understand and see the positives.

EHCNA = Education, Health and Care Needs Assessment - the assessment you first request as part of the EHCP process.
IPSEA = Independent Provider of Special Education Advice - a charity who supports parents.
SOSSEN = SOS special educational needs - another charity who supports parents.
SENCOP = Special Educational Needs and Disability Code of Practice - the government’s statutory guidance for special educational needs and disabilities.
SENCO = Special Educational Needs Co-ordinator - the teacher at school responsible for supporting pupils with special educational needs.

plipplops · 25/10/2024 13:41

DD is 15 and autistic (diagnosed a year ago). She has shutdowns just as you describe. All fell apart in Y10 (pre-diagnosis) with her doing lots of hiding in a toilet and texting us saying "I just can't".

She then crashed into burnout a year ago and her attendance slumped hugely. Got signed off completely by the GP in late June. They've now agreed to her going back doing just 3 GCSEs.

School have been pretty supportive, mostly of us just contacting the absence people every day saying "she won't be in today" or "we're bringing her in at lunch (or whatever). We got to Stage 2 of the absence procedures - once you miss a certain amount of school you get letters. They called to warn us they were coming. At stage 3 you get invited to a meeting with the local authority which we were almost looking forward to as it would give us a chance to speak to someone and ask for help? For some reason we never got the stage 3 one - her attendance was definitely bad enough to warrant it.

I applied for the EHCN assessment before the school holidays (just did it myself through the LA website) and got refused because they sad school should be able to provide a reduced timetable which at the time wasn't being offered. I think as a result of that application they then agreed to the much reduced timetable.

My number one advice is that you know your child (and you sound like you're doing a great job). Make it clear he's not going to go to detention for missing a class because he's overwhelmed. Insist that they're failing him in their duty of care as it's clear he's not coping.

We were on the NHS waiting list for an autism assessment but ended up going privately as we couldn't wait. If you can't afford that I'd recommend going down the Right To Choose pathway as it's much quicker How to request an autism assessment It will still take some months but you'll be waiting years and years otherwise.

Also, DDs school gave her support without a diagnosis (mainly access to a Regulation Room she could go to when class got too much). There were certain things that were too hard - for a bit in Y9 she just couldn't cope with PE so we told them we were going to just pick her up and take her out of school during those lessons as it was clear being there was bad for her mental health. Same for registration - we take her in for the end of registration every day.

A diagnosis helped her to understand that her brain works a bit differently (we're big fans of 'different, not broken'). In our family DH has also just received a diagnosis, and we're going privately for as assessment for DD1 (17) who was on the list for one through Right To Choose but the wheels are coming off there as well and we feel we can't wait. The journey of understanding how everyone works has been long and painful (and we're nowhere near there), but diagnoses have helped us access support (the Access Card has been amazing for DD2 to keep doing the things she wants to do, and I've applied for DLA for her because she can't get a job, and because caring for her takes additional time and money that wouldn't be a thing if it weren't for her diagnosis).

There's a lot she can't do - she gets overwhelmed easily - but understanding what's going on has allowed us to try and get a balance of getting her the support she needs (same for DH and DD1 soon).

I'm currently reapplying for an EHCN assessment, as that would allow her to stay in funded education longer. I'm trying to get an Occupational Therapy assessment and seeing if I can get the Local Authority to pay for it - if she was in a wheelchair they'd do all the necessary assessments and adjustments - I can't see why that's different just because her issues are social/sensory/neuro?

Happy to chat if you want to message me xx

How to request an autism assessment

Information about how to get a referral for an autism assessment through your GP or privately, barriers people can face, and the Right to Choose in England.

https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/before-diagnosis/how-to-request-an-autism-assessment#What%20is%20'Right%20to%20Choose'?

EndlessLight · 25/10/2024 18:39

@plipplops if the LA refuses to assess or assess but refuses to issue, you should appeal.

If DD can’t attend school full time, the LA should also be provide alternative provision. Are they?

You didn’t need to wait for a diagnosis for DLA. It is based on needs, not diagnosis. Similar for the access card.

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