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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Severe Autism,can we talk about it?

575 replies

That80sgirl · 24/02/2023 13:10

My son has this and i feel its not as well known about as Autism in which people are less affected. This is not a thread to argue about how less severely autistic people are still affected in other ways ,we know this!its a thread to talk about how disabling it is and how hard life is coping with it, and how little support is available for kids on the severe end of the spectrum.

My son is completely non verbal, doubly incontinent, cannot sit still,does not understand or is able to follow instructions, needs constant 2:1 care at all times,severe sleep issues(ie goes days on a few hours a night)our family life is dictated by his condition.

The system is broken in helping families like ours,the support just isn't there.ive spoken about this before. I just wanted to create a thread to talk and share with others in the same situation. A place to vent and share.

Ps @mumsnet Dont move my thread to SN i don't need help,im asking if AIBU

OP posts:
StepParent23 · 27/02/2023 16:30

AutismNameChange · 27/02/2023 14:39

One of my DC was up all night (from 11.30pm straight through) slapping us, running around the house, destroying things and making shrieking noises. This is not even that unusual, but I am so lucky to have a DH, I really, really, really don't know how the single parents do it. I am so bloody tired. Other DC woke up screaming and self injuring.

That sounds horrendous. Everything is worse when you’re exhausted so it must just set you up for a shit day the following day.

I think effective Co-parenting can be beneficial over a nuclear set up - each parent gets a good break - but only works if the non resident parent maintains contact.

AutismNameChange · 27/02/2023 16:33

StepParent23 · 27/02/2023 16:30

That sounds horrendous. Everything is worse when you’re exhausted so it must just set you up for a shit day the following day.

I think effective Co-parenting can be beneficial over a nuclear set up - each parent gets a good break - but only works if the non resident parent maintains contact.

Show quote history

@StepParent23 I genuinely considered co parenting in separate houses but I just love DH too much, I want him as my husband. Also, we're rapidly getting to the point neither of us can watch both DC for very long by ourselves.

StepParent23 · 27/02/2023 16:35

AutismNameChange · 27/02/2023 16:33

@StepParent23 I genuinely considered co parenting in separate houses but I just love DH too much, I want him as my husband. Also, we're rapidly getting to the point neither of us can watch both DC for very long by ourselves.

Show quote history

Honestly I have considered the same - we have to keep my DSC separate from our joint, small children for the majority of the time (social services recommend this too) and have to stay with family at times to accommodate this. It’s really hard living parallel lives sometimes.

AutismNameChange · 27/02/2023 16:36

StepParent23 · 27/02/2023 16:35

Honestly I have considered the same - we have to keep my DSC separate from our joint, small children for the majority of the time (social services recommend this too) and have to stay with family at times to accommodate this. It’s really hard living parallel lives sometimes.

Show quote history

I hear you :(

Snailstorm · 27/02/2023 16:39

Disagree with this I see no way they could measure my sons intelligence as you can't even get him to pay attention to anything, if you try engage with him in any way he just runs off

Snailstorm · 27/02/2023 16:40

Sorry meant to quote the person saying you can measure nonverbal child's intelligence other ways

Rainbowsandbutterflies1990 · 27/02/2023 16:44

Snailstorm · 27/02/2023 16:40

Sorry meant to quote the person saying you can measure nonverbal child's intelligence other ways

When my daughter was diagnosed the pediatrician said she wasn't going to do any cognitive assessment due to my daughter not being able to comply with tests. So there was no other opnion to assess my child's intelligence. She put on diagnosis significant learning disability. Also told me she was at severe end autism.

Snailstorm · 27/02/2023 16:46

I'm a single mother and already my son is getting too much to manage on my own, I have no idea what I will do when he's bigger. He's nearly 6 and he's big and strong enough already that it's very difficult to force him to do anything and he does not cooperate with anything at all. When he does a poo I have to drag him into the shower and it can take ages to just get him in there without hurting him, he refuses to put clothes on, he's attacking me constantly and I have no help. He's at his dad's 2 nights a week but I'm on my own the rest of the time, can't even have 5 minutes to relax when I have him as can't leave him on his own and once he goes to bed I just go to bed myself as I'm so tired

Snailstorm · 27/02/2023 16:47

He's also not at school yet due to council fuckups that's still being sorted he should have started a year and a half ago

JustKeepBuilding · 27/02/2023 17:29

Snailstorm · 27/02/2023 16:47

He's also not at school yet due to council fuckups that's still being sorted he should have started a year and a half ago

As DS is compulsory school age the LA must provide alternative arrangements if DS isn’t in school. If they aren’t doing this email the Director of Children’s Services threatening judicial review. If the threat doesn’t work contact SOSSEN for help with a pre-action letter.

Snailstorm · 27/02/2023 17:47

JustKeepBuilding · 27/02/2023 17:29

As DS is compulsory school age the LA must provide alternative arrangements if DS isn’t in school. If they aren’t doing this email the Director of Children’s Services threatening judicial review. If the threat doesn’t work contact SOSSEN for help with a pre-action letter.

Show quote history

They have found him a school now but it's not a proper specialist school it's a mainstream school with a resource provision. He had his first day last Wednesday and I already had concerns due to none of the staff knowing about his swallowing issues when we had gone to visit a few days before, he can't have liquids he aspirates. But talked to them again before his first day and they seemed to understand. Night after his first day he came down with a 40 degree fever and was ill the next few days. I can't say if that's because of him aspirating water, the doctor didn't find anything wrong with his chest. But seems a bit weird he would get ill straight after his first day. Now we're waiting for transport to be sorted out for him to start going full time so he should be going in a couple of weeks but I'm nervous after that

Snailstorm · 27/02/2023 17:50

I messaged the council and said I had concerns about the school ability to look after him safely and they just said if I don't send him to school I'll get in trouble for attendance issues

JustKeepBuilding · 27/02/2023 18:03

@Snailstorm Ignore the LA’s threats for lack of attendance. They wouldn’t get anywhere pursuing it. If DC can’t attend, including because of their SEN, the LA must provide alternative arrangements. Although yes often need forcing to do so. If you want a a SS have you appealed the placement via SENDIST?

Snailstorm · 27/02/2023 18:06

JustKeepBuilding · 27/02/2023 18:03

@Snailstorm Ignore the LA’s threats for lack of attendance. They wouldn’t get anywhere pursuing it. If DC can’t attend, including because of their SEN, the LA must provide alternative arrangements. Although yes often need forcing to do so. If you want a a SS have you appealed the placement via SENDIST?

No was told this is the only place with a space and that he's on the list for a proper specialist place but won't be before September

PennyRa · 27/02/2023 18:10

Snailstorm · 27/02/2023 16:39

Disagree with this I see no way they could measure my sons intelligence as you can't even get him to pay attention to anything, if you try engage with him in any way he just runs off

The first thing the Dr did was ignore my child. That would be terrible for a nt child, but they knew how to handle the situation differently. They knew how to meet the child where they were at.

JustKeepBuilding · 27/02/2023 18:21

@Snailstorm Are you still within the appeal window? If so, you should appeal to SENDIST now. If not, you should request an early review to try to get the right of appeal.

Unless your preferred school is wholly independent the LA must name it unless they can prove:
-The setting is unsuitable for the age, ability, aptitude or special educational needs (“SEN”) of the child or young person; or
-The attendance of the child or young person would be incompatible with the provision of efficient education for others; or
-The attendance of the child or young person would be incompatible with the efficient use of resources.

On its own being ‘full’ is not enough of a reason to refuse to name your preference. The LA has to prove the school is so full admitting DS is incompatible. There is a point the LA can do this, but the bar is high, far higher than many LA’s claim.

Feefee00 · 27/02/2023 19:10

Moonicorn · 27/02/2023 15:18

Is learning disability more common in people with ASD? If so, why? I can’t remember the last time I heard about somebody with a LD but with no joint ASD diagnosis.

Yes 40 percent of people with autism also have LD. It's related to the brain but a lot of the brain is still a mystery and we aren't sure how it works. I know one person as a child who was fine until they had meningitis it caused brain damage and they developed asd and LD..

PennyRa · 27/02/2023 19:42

Feefee00 · 27/02/2023 19:10

Yes 40 percent of people with autism also have LD. It's related to the brain but a lot of the brain is still a mystery and we aren't sure how it works. I know one person as a child who was fine until they had meningitis it caused brain damage and they developed asd and LD..

Show quote history

Are you sure it wasn't PANS?

Corsica2023 · 27/02/2023 19:45

My brother was fine until he had meningitis as a 2 year old. His autism, brain damage and epilepsy began after then.

AllOfThemWitches · 27/02/2023 20:20

Some autistic people (me included) do find positive sides to our autism. This isn't to invalidate the experiences of those caring for children with severe autism, but you can't compare it to a terminal illness.

Yeah I actually find that quite offensive. I get a lot of joy out of spending time with my child. It's fucking hard work and I am worried 100% of the time for various reasons but it's not all doom and gloom for me. Plus, he's happy most of the time.

x2boys · 27/02/2023 20:52

AllOfThemWitches · 27/02/2023 20:20

Some autistic people (me included) do find positive sides to our autism. This isn't to invalidate the experiences of those caring for children with severe autism, but you can't compare it to a terminal illness.

Yeah I actually find that quite offensive. I get a lot of joy out of spending time with my child. It's fucking hard work and I am worried 100% of the time for various reasons but it's not all doom and gloom for me. Plus, he's happy most of the time.

My boy is too ,he makes me laugh everyday even though you have ti.have eyes. In the back.of your head ,but in main he's a pleasure to be around

DesertRose64 · 28/02/2023 05:04

My son is great fun. He’s also affectionate in his own way - he shows it by sitting beside you and sniffing your elbow, the wrinklier the better, but sometimes he’ll just come and sit beside us and give us a look that says ok, I’m here and this is our time. He’ll then occasionally rock back and forward and make his happy noise and it’s beautiful. If he wants to have a belly laugh he’ll find the scariest monster pictures he can on his iPad then come and show them to you. And of course you really have to ham it up when it comes to how scared the pictures made you and he loves it. His party piece however is to run into a room and shout F*k you before running out laughing when we then reply ‘and f*k you to Ds.

CoffeeWithCheese · 28/02/2023 09:05

DesertRose64 · 28/02/2023 05:04

My son is great fun. He’s also affectionate in his own way - he shows it by sitting beside you and sniffing your elbow, the wrinklier the better, but sometimes he’ll just come and sit beside us and give us a look that says ok, I’m here and this is our time. He’ll then occasionally rock back and forward and make his happy noise and it’s beautiful. If he wants to have a belly laugh he’ll find the scariest monster pictures he can on his iPad then come and show them to you. And of course you really have to ham it up when it comes to how scared the pictures made you and he loves it. His party piece however is to run into a room and shout F*k you before running out laughing when we then reply ‘and f*k you to Ds.

I was giggling so much when I went out to visit a guy who has a bit of a thing for bare arms a few months ago. I wasn't aware of his bare arms "thing" and had gone out, bare below the elbow - and got greeted with "SHE'S GOT BARE ARMS" and then had him stroking them like a cat for the entire time I was there... it was soooooo sickly and I was trying to look professional and competent but everyone in the room just ended up in fits of laughter as it spread around the room.

CoffeeWithCheese · 28/02/2023 09:05

tickly - damn you auto carrot!

ForTheLoveOfSleep · 28/02/2023 10:12

AutismNameChange · 27/02/2023 14:39

One of my DC was up all night (from 11.30pm straight through) slapping us, running around the house, destroying things and making shrieking noises. This is not even that unusual, but I am so lucky to have a DH, I really, really, really don't know how the single parents do it. I am so bloody tired. Other DC woke up screaming and self injuring.

Just a message of solidarity. After hours of screaming, and me now missing a huge clump of hair, my daughter finally fell asleep at 4:30am this morning. I have to get up at 6am for my other children so I haven't yet had any sleep myself as it take me atleast 2hrs to actually fall asleep. The night before I got 4 hours which is the usual.