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Original poster

Struggling so much with autism son

10 replies

Pointthewhats · 13/02/2022 12:45

I hate life so much and really can’t cope much more. I’m fed up pretending life is ok and no one understands what our family goes through
No friends or family support doing it all by ourselves. Friends have stopped inviting us and it hurts seeing them living ordinary lives whilst our lives are relentless

Our 10 year old son is ruining our family life and I know he cannot help it but he wants to control everything, doesn’t accept the word no, demands everything and we cannot afford his expensive taste and not fair on other children
He has meltdowns in public and at home he screams and screams till we hopefully give in
He’s swearing, thrashing around and has so much anger in him
We live in a terraced house and neighbours can hear everything and I feel like I’m walking on egg shells as they don’t like the noise
It’s affecting our other children and they act up as they cannot understand why their brother needs so much support
I’ve tried paeditrucian/ camhs but no one is interested or offers real help. I just get directed to websites which offer no real help
He has echp in school and with help he’s doing ok in school but at home he releases everything and we take the brunt
Can anyone recommend private help/ support/organizations
I’m currently in tears again in my room whilst he’s been screaming for two hours as I didn’t allow him a bag of sweets ( he’s had breakfast and biscuits before 10 and I said no as these sweets have become an obsession and he demands them every day)
I hate the weekends and so done with it all

OP posts:

Original poster

Pointthewhats · 13/02/2022 15:22

Anyone?? Even Mumsnet isn’t interested

OP posts:

Gabbiadini · 13/02/2022 15:25

@Pointthewhats

Anyone?? Even Mumsnet isn’t interested

I think Sunday afternoons can be a bit quiet on Mumsnet.

I have no advice I’m afraid but just wanted to say you are not alone and there will be others out there in a similar situation who may be able to help. Even just finding others who are dealing with the same kind of thing will hopefully be useful.

I hope you get some replies soon.

Sockpile · 13/02/2022 15:26

Have you looked on Facebook to see if there are any local online or in person groups in your area?
You could ask school if they know of any local support groups too.
It does sound really difficult and I hope you find some support.

Interested in this thread?

Then you might like threads about these subjects:

10 year olds Families

Easterbunnyiswindowshopping · 13/02/2022 15:26

I feel for you op. My ds 13 is currently at the beginning of the diagnosis stage and I am struggling already. Stealing food and impulse behaviour (smashing things) is affecting us as a family
. His younger sibling isn't always recognising him as his db lately and it's very sad..
Have you any outside support?

CardRoomGreen · 13/02/2022 15:30

You needs to talk to his teacher and SENCO. They will be able to offer you informed advice and calming strategies. It is not unusual for children to cope in school then it all blow up at home for a variety of reasons. It's called the coke bottle effect - shaken all day, then released at home.

Does he use Zones of Regulation in school? If so, then you can learn how to use it too, and if not then find out about it and start to use it all the time.

Do be aware though that it won't be easy. There is no magic wand. This is a life long condition that you need to accept and work with. Don't just think that because something is on a website it isn't good advice. This is good National Autistic Society

MaMaisey · 13/02/2022 15:31

Hi, if you have any sensory processing therapists near you I would recommend paying for an assessment. Every child is different so what worked for mine may not work for yours but they helped with many behaviour issues in my child it was worth the cost of the assessment. Also maybe call caudwell children and see if they can help. Ask your local authority for young carers support for your other children. Make sure you take time for you each day. Keep pushing for support.

harriedmum · 13/02/2022 15:35

I don't have any advice, but Its so so shit. We don't even have a diagnosis for 8 year old DD, but ASD is suspected, I could have written your post. We don't have other children, but I really empathise with what you say about dreading weekends and being fine at school. We just live Monday to Monday

Concestor · 13/02/2022 15:36

Hi, I'm sorry to hear you're struggling, it can be very hard. I'm in a Facebook group with lots of parents and you might find it helpful. You can post anonymously on it as well. It's called Gentle parenting for autistic children UK.
People will be kind with you on there, whereas some of the other groups I'm in might be a bit harsh.

Paradisaeidae · 13/02/2022 15:37

I think you (and likely your other family members) need space and respite. If you can't get it right now externally, can you and dad divide and conquer?

Have a think together, look at your week/month and carve out times that.

the adults can have a few hours peace to themselves each.
a session each where one of you takes the other kids out and one stays home.
a session each where each of you takes ds out of the house and one stays home with the others.

Are your neighbours approachable? If they are just let them know you're away of the noise and apologise.

In terms of sweets - maybe have a set day that they get a sweet from the shop. Set times they get a biscuit.

Money/expensive tastes - I curbed this by giving mine a weekly small amount of pocket money. If he wanted, say a Nintendo game, we would do a visual saving up board with a square for each pound coin.

He'd cross off each pound. Was up to him if he spent or saved. He soon got a grasp of it!

Look for local parent support groups. They're a lifeline.

Ask for an assessment of needs with your local authority. Look into direct payments for your son. They could be used to have a carer take him out for a few hours a week, or to go to a local activity group session each week for example.

MrTumblesEyebrows · 13/02/2022 15:50

I work with autistic children with severe challenging behaviour and I meet so many parents like you who are not being supported. The last few weeks I’ve had two parents on the phone to me in tears because their teenagers are causing their families so much physical and emotional pain.

Speak to your son’s school’s safeguarding lead. Is he at mainstream school or SEN? Do you have a social worker? Document every incident. Write it in his home link book so that school are aware and it’s in writing and dated. Make yourself a nuisance and make yourself heard.

My friend with a child with severe SEN didn’t get any help until she told social services she didn’t want him anymore and that she wanted him put in a residential home.

She had NO INTENTION of her son leaving her house but it was the only way she could get anyone to listen as SS didn’t want to pay for his care. It’s cheaper for a child to stay in their home.

This may be a last resort but you cannot be expected to live like this.

Have you applied for a personal budget via his EHCP? If the annual review isn’t soon, ask to arrange an emergency one and state your struggles in the meeting and use it to back up your application to social services for a personal budget. You can get a care package and/or direct payments which you can use for respite care. Carers can take him out on trips to give you a break or you can have a carer come in before/after school to support you.

You do not have to live like this.

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