To ask when things got easier with your autistic child?

[CosmicCoconut]

I'm at my wits end with my DS. He's 8. Diagnosed as Autistic and as having ADHD, ARFID, PDA tendencies and recently comments have been made by professionals about "something else going on but not sure what".

Life is unbearable with him. He is the kind of child that can only function on a one to one basis. As soon as you add another person, be it adult or child into the mix, he goes totally out of control dysregulated and won't stop until the person has left.
I have a 1 year old as well which as awful as it sounds was the biggest mistake I could ever have made. DS just cannot cope with another child in the house so every single minute of every day is hell on earth. Poor 1 year old is scared of him and can't even play quietly in the house without DS harassing her.
He's honestly a danger to himself, he has massive meltdowns and escapes the house and runs off streets away or punches holes in the walls and doors. He breaks everything he touches so we are left with broken toys and furniture as I've run out of money to keep replacing everything.

He doesnt sleep. Even with melatonin he still only sleeps 4-5 hours a night. He wont let the 1 year old sleep, wakes them up deliberately by being noisy or going into their room. He doesn't let me sleep.

I am exhausted. Ive not slept more than 5 hours a night for years. I can feel the impact the lack of sleep and constant stress is having on me. I can barely string a sentence together half of the time and have issues with my memory now. I can barely remember a thing from last year for example.
I dont really leave the house much as its impossible to go out in public with him and 1 year old so it means everyone is bored and frustrated stuck in the house.
Ive gained 6 stone in the last 3 years from the lack of exercise and stress eating.

Ive begged for help from professionals and I get nowhere.
They wont help. Its always a funding issue or someone who thinks they know everything based off of a 1 hour meeting.

I dont know what to do any more.
I wish I'd never had kids.

I have 0 family to help. Literally 0.

Has anyone else been through a similar experience? Does it get easier as they get older? Or worse? I'm scared of when DS becomes a teenager.

I am so sorry to read this, how absolutely awful for you. I really resonate with what you are saying. No one should ever have to beg for help like that and still be rejected time and time again. I'm glad you've gotten at least a tiny bit of respite but in the grand scheme of things it probably doesnt make things that much easier.
I had the same with my DS, every carer and one to one that was sent for him in his 3 years out of school, quit as they said they couldn't handle him.
I secretly worry too that DS will kill one of us when he is older. It sounds shocking to say but if people knew the level of the meltdowns and the way he goes out of control, factored with the impulsively and resentment he feels toward his sibling. It really does worry me sometimes.

Yes we had this too. Were told we don't meet the criteria and case marked as closed.

We had a social worker we don't now ,
We have had lots of service, s involved for specific reasons they don't stay involved

Sounds like my life 6 months ago, DS almost 9 autistic and adhd. We paid a small fortune for private medication as where we are the wait lists are hellish (been waiting since 2020 to no avail) the medication has been life changing, I was very reluctant to start but honestly our house was like a war zone, our other DCs were seriously impacted by the behaviours. We still have the odd few meltdowns but nowhere near extreme as before.

I would contact social services and say you can’t cope with him any more and want him taking into foster care.

Don't be ridiculous.

Your family needs a social worker as your family is in crisis and in danger of breaking down. Social services will want to prevent this so should offer you appropriate support. (It will not be offered on a plate.)

The other thing to consider although you will have to fight for it is residential care/ residential schooling. If the current school cannot cater for your son’s needs it will have to be considered especially as your son is still only 8.

I have been through this myself with two different children who were permanently excluded from several schools. My family did break down completely sad to say.

My son got easier between 5-9 and then harder again. I’ve found school has a massive impact on emotional regulation.
it will be different for every child i guess I’m also hopeful for some improvement!

It would only be considered in very extreme circumstances, and only as a last resort and it could ba anywhere in the country
And even then the residential school would have to agree it can meet the child's needs.

That's insane. From what it sounds like you definitely should qualify for respite. Can you try again and insist on your mental health deteriorating to the point of no return if you don't get some respite.

My DS asd 15 was at the absolutely worst between 12-13 when puberty kicked in. He became violent and hit everyone at home including his father, brother and me when he had a meltdown. Started crying uncontrollably in school and then refused to return for 2 years. His psychiatrist tried all sorts of antipsychotics which only made things worse. He was hospitalised for a week which really really helped to calm him down. He managed to contain his violence after that and just shouted swear words and hit objects.

I give him Cyamemazine every evening (that's when he's worst) which makes him calm down and go to bed early and sleep all night. It's respite for the whole family including himself. Can you ask your psychiatrist if there is something soothing rather than stimulant to give him because you can't continue living like this. And puberty can be a very dangerous period since he's already violent. This needs to be prepared for by his psychiatrist.

I wish you all the best. Life can be really tough sometimes. I wanted to just end things when it was at It's worst. Things are not great today but much much better. So there is hope ❤️

So I do have a good package of respite now but my son is 15 we had an early help meeting at school [ my son is at a special school for children with severe and profound learning disabilities and autism) and were referred to social services for an assessment of needs ,A social worker came out and did ask assessment which included the whole family, and made recommendations, it went to panel and ee got two overnights a month every other Saturday 10 -3 at a holiday club and a couple of days a week in the school holidays at the same club
It wssent automatic though and it took nearly a year from being granted it to accessing it due to waiting lists.

Hi I'm in a similar situation I've got an almost 8 year old severely autistic son and a 10 month old. Same issue with him waking her up sometimes deliberately that really drives me nuts, she's not scared of him though so far in fact she is always trying to play with him, he mostly ignores her and I have to watch them very closely but there's been a few nice moments between them.

i also struggle with taking both kids out in public at the same time I don't really take them anywhere except the local park and that can be a bit risky. My son has a special needs pushchair and I used to take him out in that but now I have the baby I can't push 2 chairs at once so if we go out I've got baby in pushchair and my son on his harness but if he decides to act up I can't really control him. I was hoping I'd be able to have baby on me in a carrier while I have him in his pushchair but that hasn't worked out because I've got problems with my back since the pregnancy so can't carry her for long. But this problem hopefully will get easier in a couple of years once the baby can walk and be a bit more independant and he can go back in his chair.

Same with the stress eating, weight gain, tiredness and memory problems . Sleep has improved recently though because son has started taking clonidine which his paediatrician prescribed and it is really helping him to sleep longer, he takes melatonin too which helps him fall asleep but he used to wake really early or often wake in the night around 2am and not go back to sleep.

I'm scared of the teenage years too although I've heard it can go either way and sometimes they actually calm down as they get older so I'm hoping for that.. is your son verbal or has any way of communicating?

Contact your social care department at the Local authority and ask for a section 17 assessment and a parent career needs assessment. Some are shite and will offer nothing, if you don't get adequate support do a formal complaint to the LA and then take it to the local government and social care ombudsman. When you next have an EHCP review you can appeal the social care section as long as you also appeal something in the education section.

unfortunately you have to really fight for support. Also have a look at these links. I hope you get some support x

https://contact.org.uk/help-for-families/information-advice-services/social-care/

https://contact.org.uk/wp-content/uploads/2021/03/Services-and-support-from-your-local-authority.pdf

https://drive.google.com/file/d/1T29XgbBLcfdt9WTtLa0AhT13ez-yZeKH/view?pli=1

I would record those meltdowns, and keep a record of frequency. In fact, I think I’d install a camera in the main living space and hand over a week of footage to social work, possibly with notes on the sections of recordings to fast forward to. But give them everything, so they can’t claim you’ve edited it at all. It sounds horrific.

I've been in same position (though I can't share details online). I know you have tried medication but I would try again - Risperidone was a game changer.

The medication my DS tried was Methylphenidate and it seemed to calm him down a little bit but once the dose went up he started becoming very aggressive and sometimes violent and it got to a point that things were even more unsafe than usual.

I've not heard of the other medications mentioned so I will contact his paediatrician again to discuss again as maybe we will have a miracle and something will work.
His paediatrician says she's not sure how much of his behaviour is caused by the autism rather than the ADHD which means medication may not work at all.

All I know is that DS is very different to the other autistic children ive encountered over the years. I know every autistic person is different and all present differently but I think the professionals get used to seeing a certain type and gear all the help and support towards that so the ones that present like my son fall through the cracks in terms of support.

I agree with what a PP said about people being funny about the benefits we receive to be carers. Ive lost count of times people have begrudgingly said to me "but you dont have to work! You're living the dream" ... whereas I feel like I'm trapped in my own personal hell and would love more than anything to go back to the mundane life at work.