Severe Autism,can we talk about it?

[That80sgirl]

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

its weird because I’m doing everything in my power to make sure my son is happy and settled before we’re gone. I’ve told my other kids that I’d like them to look out for him and make sure he’s happy but there’s absolutely no way I ever want them to care for him full time, absolutely no way. They’ve missed out on so much growing up and now he’s settled we are starting to do some of the stuff they’ve never done before.

@StepParent23 it was a really heavy burden on my shoulders growing up and beyond. My parents insisted that my brother would never leave their care and only 'family' (me) would ever be able to look after him. Mum cancelled every arrangement put in place by social services as she got older, so that when she died in her nineties he was left adrift. It could have been an absolute shit show for him. Luckily he moved to an amazing care home that he loves and they look after everything, his finances, healthcare, hospital appointments. I am literally just a sister now. It's the best change to both of our lives.

My greatest worry is for when we as parents aren't around anymore,what will happen to my son then, i just know noone will love or care for him or show him patience like we do.ive had so many people say,dont know how you do it, why don't you put him in care,what parent could make this decision so easily?thing that hurts is noone would ever say that so easily as a solution for a normal child who was difficult, but they think its an easy answer for the most vulnerable children who are without a voice or understanding to advocate even the simplest of things for themselves. My son hasnt just broken me,he has also taught me alot,patience,understanding, empathy and love in the face of extreme hardship.

I agree with you. I meant to post the exact same reply as your first line

I honest to god don't know how you do it. You are Saints. Is it wrong to believe that the decades old system of caring for children with such complex needs together in state homes was so terrible, if updated nowadays to encouraged and welcomed parental input too? ducks

I’m not going to be so brazen as to agree with you, but I do think a lot of “care in the community” is in the spirit of cost saving rather than for the families or children’s benefit.

There are plenty of ways of supporting parents of disabled children that don't involve putting our children into homes.

My dad worked at one of the last asylums when it closed in the late 80s. As much as he knew it couldn’t carry on as it had been he will still rant now about the issues caused by leaving people fend for themselves in the community where the “care” was minimal.

a proper network of supported placements which are done properly could certainly help many families wether as a long or short term option. Not back to the old “out of sight out of mind” ways but in a sense of ensuring the support is in place. But that would cost too much to ever happen to the level that everyone who needs it can access it.

Exactly. The ideal lies somewhere inbetween the two.

As a RNLD, there are so many of the people I've supported who stay in my mind for years , . I know it's not the same as a parents or family love but I am very very fond of my patients and their families.

One of my smalls has ASD, and to try and get anything from anyone is hard work.

I can’t even imagine how hard it is for those whose children have severe autism.

YANBU. I don’t have lived experience but I do have experience from work with two severely autistic children. I cannot take my eyes off them for a second because they have no sense of danger, on a bad day everything goes in their mouths, they climb fences, throw objects, kick, scream, pull hair, punch, pinch, bite. It’s hard and stressful and I only look after them 6 hours a day, I really feel for their parents who deal with the behaviours 24/7 and all on top of no sleep at night. They are lovely, beautiful children who deserve so much but are afforded so little, lovely families who also deserve so much help and and get so little. It’s an absolute scandal.

I don't judge any parent's decision and sadly the decision is taken away if things reach crisis point. Sometimes it isn't safe for the child to remain in the family home, there's people who are 6 foot 5 20 stone who lash out and there's younger siblings to safeguard. Sometimes the environment can't be changed/made safe enough to accommodate the person's needs. Many parents especially as they get older can no longer safely restrain and it's unsafe for one person to restrain.

I really don't judge or blame anyone for making these difficult decisions.

I agree with everything you’ve said @Feefee00. I think @Dancingcactus was talking in general terms because of the comment up thread:-

I honest to god don't know how you do it. You are Saints. Is it wrong to believe that the decades old system of caring for children with such complex needs together in state homes was so terrible, if updated nowadays to encouraged and welcomed parental input too? ducks

“I’m not non verbal most of the time, obviously. Nor am I pretending to be”

non verbal means you don’t/can’t/don’t have enough understanding to talk. You can’t be non verbal some of the time. If you can/do speak even some of the time then you’re not non verbal.

Some non verbal people have written books. Just because they can't talk doesn't necessarily mean don't understand or can't communicate.

And selective mutism is a thing

This is true but many don't ,and there are people in my group.that have children who maybe described as savant,in some ways and have extraordinary ability in some areas but if they can't do the basics for themselves such as toileting and personal care than they are still extremely disabled by their autism

My brother is severely autistic and have avoided commenting as the inevitable domination of severe isnt a thing infuriates me to tears but as there has been some talk of siblings i wanted to share.

My mum is single parent and only carer to my brother and i grieve continually for the life she could have had. I ended up being removed from the home at 14 and went in and out of social services and supported accommodation as the violence/smearing and other puberty behaviours ment i was only safe locked in my room.

My mum cannot bear involve carers as she cannot bear the thought of what will happen to him and is all consumed with it. This has been her life for 25 plus years and she is now so isolated from everything with her entire day consumed by my brother that i dont even know what her day would look like if she could choose what to do, god even which light switch to turn on! I know she deeply hopes he will go before her.

I never go round as he dosnt allow me in the house and at 6”4 and a mountin it isnt happening! My mum is fully aware that i wont have anything to do with him when she dies, and why would i, i have had my life torn apart it enough already. I am 28 now and made the personal choice long ago to never live with anyone or have children.

As much as I may get flamed for it, I hope he goes first, maybe then me and mum could have a coffee or go for lunch for the first time, it breaks me that something so simple is taken for granted by so many.

@Justfornow28 oh your post made me cry. I’m so sorry that’s heartbreaking to read. As a mum of a severely autistic daughter I do get a sense of where your mums coming from but her sacrifice and the terrible effect on you it’s truly awful.
Sending you a virtual hug

It's called severe - high functioning

@Justfornow28 I'm right with you. My mum used to say that she would outlive my brother. She got to over 90 looking after him before she succumbed to dementia. You live and enjoy your life x

Yes selective mutism is a thing for those that talk sometimes. Non verbal means non verbal though. Like ALL of the time.

As I said in my post, if you read it, some don’t talk because they physically can’t, some because they don’t want to, some, like my son, because he doesn’t have the receptive language to be able to use expressive language. So of course I know that some non verbal people have written books or have the ability to put their thoughts into some sort of communication device. What’s your point?

@CoffeeWithCheese wonderful, true, sensible post - applauding you 👏

I understand completely. My kids have had tines where they’ve had to lock themselves in their rooms. Had I known how my son would be as an adult I’d never have had more children. I knew when things got really bad when he was 16/17 that we’d have to find a residential placement for him. He’s mid twenties now and now he’s there life is so much better for everyone, him included. Just being able to pop to the shops or go out for dinner is such a huge thing! He’s home at the moment for a week and there’s been so much tension in the house the last couple of days with the younger ones tip toeing around so no one annoys him. Don’t get me wrong there are some nice moments too but the bad outweighs the good. All of our other kids have said they won’t have children which is quite sad for them, I definitely don’t blame them and I’m fine with not having grandchildren.

@Justfornow28 I am just so sad for you. And for your mum of course, but at this point (as he's an adult) here seems to be a degree of choice in her actions.

Siblings of those with the most negative and difficult behaviours are in such an awful position. I've always known that, but your post brought it home.