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

@Justfornow28 that was such a heartfelt and heartbreaking post,must have been hard to write it,its a hard read for people that don't live this life with this severity of Autism. but i completely get it,completely. I understand it from your mums end,im like this to an extent, but also having two other children i absolutely understand its effect on my children, i know id never make them feel responsible for their brother and i know im going to have to fight with my life to get him appropriate care in a setting which will be good for him. Thank you so much for sharing, it made me cry,i feel such grief from it all and i can read that in your reply.

knew when things got really bad when he was 16/17 that

that’s the age everything started to change for my son as well and it caught me completely by surprise. I always thought that what I’d put into him as a child (I did Home Ed with him) would be the mould for his adulthood. Then one day I realized that whereas I’d been part of online communities for those with young children who were autistic they’d all quietly disappeared once the children got a bit older. Then I understood why.

Do you have an example of these books and their authors to share?

I know non verbal people who create amazing art but their parents (mums) are very heavily involved in them being able to get it anywhere, same as they would with small children

@HikingforScenery i just googled out of interest and was surprised by the results. My search was ‘books written mute autism

There was chat earlier on about young carers, please make sure doctors, school etc are aware that your child is a YC , and ask them for referrals to local charitys/YC support. There is no where the amount of support that there should be but it can help give them respite/days out/people that get it.

Hi @That80sgirl I commented on your other post before, just seen this one. Haven't read the whole thread but I agree about the autism support groups, I left all the ones I was in ages ago due to them being overtaken with autistic adults chastising parents for venting and people arguing about stupid stuff like "should you say autistic person or person with autism" and is the puzzle symbol offensive, etc.. I was like my sons banging his head off the wall and eating his own poo right now I kindof have bigger things to worry about, who cares about that stuff??

I'm diagnosed autistic myself too but I don't feel like that gives me any insight into the mind of my severely autistic son really, I have no idea what goes on in my sons mind..I can relate to him on some things like hating certain noises etc but that's about it, he is very different to me and how I was as a child too. I did just have a look on Facebook and there's a group specifically for parents of severely autistic children with 6k+ members and the rules seem pretty strict about it being for parents of severely autistic kids only, so maybe it's better. I've joined but not been accepted yet so will see. I found in person support groups useless too as my son was always the worst one there and everyone just ignored us even the group leaders.

Here is a good example of this nonsense too, look at the comments on this video.. one of the top comments is saying the title should say "child with severe autism" instead of "severely autistic child". And it has 13k likes!! Wtf? Do they really think this lady and her son give a crap about that? It's ridiculous it makes me really annoyed

Also, about people saying it's the learning disability that causes such low functioning not the autism.. my son was diagnosed with autism at 3 and severe learning disabilities at 4 but I have trouble accepted the learning disabilities diagnosis. It does seem like he has that now as he now is completely non verbal and has little interest in anything, spends all day just running around stimming and doesn't appear to understand anything said to him or what's going on around him. But as a baby and toddler he hit all his milestones early and by 2 years old he could say many words (although not to communicate), he knew colours, animals, he could count to 100, he memorised where countries were on a map, he would draw letters and numbers and people. He seemed very intelligent. He was very obviously autistic at this point, a lot of repetitive behaviour, no communication etc. He then lost all those skills he had. But I feel they are still inside somewhere, but the autism has taken over. He still learns very fast certain things (such as how to get items I've hidden so he can't get them). It is confusing and I feel like not enough is known about the brain

@Snailstorm I totally agree with you. I don't see how you can measure a severely autistic child's IQ anyway.

My child obviously doesn't learn in the same way as his peers but he has no issues 'problem solving' to get what he wants 🤣

I think even when a child definitely has a learning disability as well as autism, the autism makes the learning disability appear more severe than it is. I think children and adults with both often understand more than people think they do.
My son now 16 is non verbal, a severe learning disability and has never learnt a consistent communication method but does have intentional communication and understands a lot of speech and will follow instructions if people speak to him in the correct way.

He is also always very aware of car and walking routes and will instantly let you know if you have veered off the usual route. If we miss a junction he lets us know in seconds.

You can but you have to use non verbal measures as opposed to verbal assessments. A lot of standardised assessments are not geared to capture the strengths of non verbal children.

That must be so frustrating knowing he has that ability but it’s trapped inside somehow.

Yeah it is.. I have so many videos of him doing these things and I look back on them and feel sad. He seemed much happier back then. I feel like there must be something I can do as his mother to bring it back out but I don't know what and it makes me feel like a failure. Like maybe I didn't do enough back then to encourage it? But he was so difficult to deal with even back then. But I still had hope then that he would be ok and be able to communicate and things and now things seem so hopeless but he's only 5 so maybe it can still come back I don't know

I agree. Sibs is another good charity that supports siblings.

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.

I’m sad for you, but your mum has caused this situation, not your brothers autism. My NT kids have had to make sacrifices because of their siblings, but I would never allow it to reach this level of neglect for one of my kids.

Similar situation here, except D's had his 'regression' earlier, at about 18 months. Prior to this he could kick a ball forward and backwards, stop it with his foot, would help to unload the dishwasher, had approx 20 words and would use them to communicate eg point at a dog and say 'woof woof'. Then bang. Over a period of about a week/10 days he disappeared in front of my eyes. Akin to dementia or brain damage I can't help but feel. He had lots of medical tests and the outcome was classical autism . He's also 5, and while he's come a long way from the blank, unreachable child he became at 18 months he's still not back to where he was. Will he ever be? Regressional autism is very cruel - like a glimpse of their potential, then poof. Gone.

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.

YANBU. I have a child diagnosed autistic but he's functioning. I have had to come off some of the 'help' pages as even I"m finding them insulting and less than helpful ( I feel like my son is autistic even though school disagrees and it must be the teachers that are wrong as he's masking for 6 hrs a day, so he's self identifying as autistic etc etc)

To have a truly dependent child (and mine feels pretty dependant, so I just can't imagine) is a whole different ball game.

@AutismNameChange
that sounds horrendous . The sleep deprivation and relentless onslaught must be so exhausting for you. I know it doesn't help but I wanted to acknowledge how hard it is for you and your dh and say I take my hat off to you both.
At least my child is contained in a safe bed so cannot wreck havoc in the wee small hours for which I am extremely grateful .

It's not as straight forward but very doable

Thank you so much @flapjackfairy , means a lot.

@crackofdoom

MS is not inevitably fatal. On average it takes a little off the average life expectancy, and that gap is decreasing all the time. That's taken from here:

www.nhs.uk/conditions/multiple-sclerosis/

We are largely agreeing on the importance of truth and accuracy on this thread, so please read the link or educate yourself a bit about conditions you comment upon.