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

@That80sgirl you have my sympathy. I've just been woken up with a kick and a hit in the head and told to f* off. It's going to be a long day.

My daughter has been up since 2.20am and had about hour sleep at 6, so today is going to be tough My husband took over at about 6 so I was able to have few hours. I also had her shouting at top of voice around 4 so youngest daughter woke up but thankfully went back to sleep after few hours. So quiet day for us today. My youngest daughter also has been given the bear that u record all fun things u do at weekend and take photos to show class 😵‍💫

@That80sgirl sending you love and strength from a fellow mum in the deep trenches of caring for a child/ young person like your son. I too feel frustrated that other posters have used this thread to demonstrate how clever they are. Plus posters suggesting this isn’t the right space and it would be better off posting elsewhere. That to me illustrates the problem: namely most people don’t want to know or care,so we should shuffle off quietly.

My daughter has been up since 2.20am and had about hour sleep at 6, so today is going to be tough My husband took over at about 6 so I was able to have few hours. I also had her shouting at top of voice around 4 so youngest daughter woke up but thankfully went back to sleep after few hours. So quiet day for us today. My youngest daughter also has been given the bear that u record all fun things u do at weekend and take photos to show class

My child was up early too but full of smiles and cuddles(!) so I didn't mind too much. Hope you have a peaceful day !

I too have been awake since 2,my son kicks the walls,bangs his head and vocally stims until he's let out of his room,which has to be immediately so rest of family can sleep,also if left longer than 10 minutes he inevitability starts to dig into his nappy and then it turns into washing bedsheets and bath for him and scrubbing walls and anything else hes touched. i worry about the impact of it all on my other two children, its such a different childhood for them ,although ive filled it with all my love and have a constant smile plastered on my face,i know they hear the same mummy crying quietly in the toilet,or praying continuously under my breath for God to change things,to make it all easier, to make me stronger.

Asperger was a commited Nazi.

I am also incredibly worried about the impact on my youngest daughter. I can definitely relate. Also the smearing she does in phases last happened a few nights ago. I do think my younger daughter has lot of compassion and she looks out for her sister in like being an older sister. I will look at young carers in future as she is 4 so little young. But is still classed as one now. (I don't give her any carering duties but its just how they explain it) But hoping that will help her being around other siblings and will relate to others.

You are completely right.

I've worked in special schools for children with autism on and off for about 5 years now. I know how hard it is, and really feel for the parents.

Does anyone regret having more children where their disabled child is the eldest? I think that was a mistake on our part. Obviously I love the younger children but a lot of the challenges come from balancing their needs. If I’d have known the extent of the behaviour and quite how challenging it would be, to be short if they were better tempered their intellectual disabilities wouldn’t be so problematic to the rest of the family, I wouldn’t have had children with my DH.

I don't know if I should say this but I'm hoping this is a safe space. I've recently discovered I'm pregnant, very much unplanned and even if money was not an issue, I can't have another child knowing I'll be caring for my son for the rest of my life.

Me and my DH have said if we had an unplanned pregnancy we wouldn’t be able to manage. No judgment here whatever you chose.

@That80sgirl
on a practical note we have a urzone bed that is basically a tent that is zipped from the outside which contains our child. so no banging on walls etc although doesn't solve the shouting of course. He likes it and it really helps him settle but it cost a small fortune and took 3 yrs of fighting to get his local authority to fund it ( foster child) . Charities like Newlife will often fund large items so worth a look and there is a sn second hand equipment site on facebook that sometimes has tent beds available.
We also use the seenin all in one pyjamas with extra measures they can add to stop our child removing them and smearing in the night. They cost an arm and a leg but are a game changer.

I spend a lot of time researching products to try and outwit our lad.

@flapjackfairy we were going to be funded for a safe space but newlife couldn't get money together, thus was during covid, we never reapplied or pursued as we realised we actually didn't have enough space as it was(small small house) the nightwear sounds good i shall look into this. Really annoys me though that any special needs items be it clothes, toys, prams are ridiculously expensive and if you cant afford them you are stuck on waiting lists for approval.this happened for us for a pram.

@That80sgirl Have you considered applying for a disabled facilities grant in order to have the space for a Safe Space bed or similar? There are charities other than NewLife who might be able to help fund one e.g. the Steve Morgan Foundation or Elifar Foundation.

I agree it is crazy the price of everything.
Going back to the urzone it is not as big as a safespace bed. It is only the same size as a normal single bed and takes a single mattress. So it fits fine even in a small room and a lot of autistic people like the feeling of being safe and enclosed.
Heather who designed it and runs Urzone is great and would be able to discuss it all so worth a call. It has been a lifesaver for us and our child wants to go in it during the day sometimes as it helps him calm down.

Mines the youngest and I feel guilty that his care will be his sibling's responsibility one day.

Mines the oldest but I wish she had been the youngest, it would have made things a lot easier

@AllOfThemWitches my son is the youngest of a large family but even if he’d been the first I’d never had had another child. I won’t be judging you and I suspect there are women here who will have made the same decision you’re facing.

My parents had me with the expressed intention that my life would be to look after my severely disabled brother when I grew up. I found an old will written when I was 5 in which my father stated this. I did resent it for many years but now that my brother is in a care home and the day to day care and responsibilities don't fall to me I see him in a different light and actually enjoy visiting him.

Hi OP, another one here in the same boat as you. He's only 5 at the moment but dictates every moment of my life - when I can go to sleep, when I have to get up. It truly is relentless. I just wanted to say, I have been following this thread, and thought you were brave to post it. We all knew there would be derailment, though I have to say the vast vast majority of posters do get your point and have been empathetic. This thread has been enlightening actually as to how many of us are in your situation.

I'm sorry to hear of ur experience, the guilt I feel to know my youngest daughter will effectively be her primary carer for my older daughter when me and her dad have died is overwhelming to be honest at times. I just hope she isn't angry me for it. I was 8 months pregnant with her when I found out my oldest daughter was disabled. So the choice was taken out of my hands. I'm not sure if that luckily or unluckily. I hope she understands.

That must have been really difficult to digest. Did you feel that was obvious growing up?

I selfishly hope my children aren’t burdened with the care or admin for their brother. Who manages their finances etc when they’re in a residential home?

Again it's the tone policing and topic dictation which really really fucking pisses me off whenever autism is mentioned.

Me having a meltdown and needing a darkened room to regulate back down after a sensory-challenging day is in no way the same level of difficulty experienced by someone as the parent or carer or a child with severe ID and also an autism diagnosis (or indeed the level of difficulty of the child when the world is being particularly puzzling, overloading and just not feeling "right").

I can understand why my brain is freaking out on me and I've got the experience and insight to know how to support myself in the best way to get back on a more even keel... I'm in an incredibly lucky position that I'm not relying upon someone else to observe a tiny change in my behaviour and know that something's not right, that I might be in pain from a tooth, or constipated or anything else and work through a list of multiple possibilities, be actually believed by professionals that something is amiss and be listened to about it. Even DD2's ongoing issues with soiling and continence being still hit and miss aged 10... it's nowhere near in the same league as those who have children who smear, or eat it, or those who can vomit food and try to eat it again, or have pica meaning parents are permanently pre-empting them zoning in on the slightest speck of fluff on the floor to stop that being ingested.

Utmost respect to those who do that day in and out, not because they're angels and "god sends special angels to those who can cope" (boak), but because it's their child (even when they're a 6 foot tall fully physically grown man).

Personally I think there needs to be some form of classification of the level autism impacts functional ability in terms of activities of daily living - although it's always going to be flawed because people do function better on some days than others (like I say - get me on a day where I'm "together" and you'd never notice anything amiss - especially if I'm paying attention to mask, which I do much less these days; but get me on a day where I'm overloaded and I do lose a significant chunk of my communication fluency - which is a bugger when you're a SALT for a living!) and people are always going to argue about where lines are drawn. There'd also be issues with making sure that any classification wasn't just drawn from that old fashioned very male-dominated stereotype of autism, and I think we'd end up arguing around in circles - but the current situation just cuts out a huge chunk of autistic individuals and their families (and again, I know that there's quite a nasty view among some about "autism moms" which pisses me off), amplifies the views of a very vociferous contingent and pisses off a huge chunk of muddling along middle grounders as well - it works for no one. People working with autistic individuals NEED to be able to understand the way that autism affects that individual - if I'm going out on a visit to someone, I'll make sure to try to have an initial feeling for the level of communication they tend to have, how routine-dependent they are, what they're likely to be able to cope with in terms of engaging with an unfamiliar person etc - it just helps me narrow down where to initially pitch things, and to step it up or down from there - plus it reduces the amount of resources I'm carting around a bit (the rest stays in the car boot!)

I don’t regret having them however had I known how my son would be as an adult I wouldn’t have had more. At 7/8 years old though, when they were born he was “easy”. Despite his difficulties he was very well behaved. It was puberty when life became intolerable.

Yes that’s probably a better way to put it, we were the same. My DSC has moderate LD and ASD (and other diagnoses I won’t list) but life wasn’t especially difficult when they were younger. it was quite abrupt but at one time it all just went downhill.