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

You are not being U. My son is just like yours . I’m going on two hours sleep after last night’s “party”. Unfortunately this entire week has been like that. At least I get a break when he’s in school.
I was taking a walk with him yesterday and my neighbor stated that apart from him being non verbal he’s “completely fine” and that I baby him and he takes advantage of me. She firmly stated he’s not low functioning. I guess the school diagnostian, pediatric neurologists, child psychologists, and state appointed social workers are all wrong and his medical diagnosis of severe autism, OCD, ADHD and SPD are all wrong.

Same here, very little sleep and my ds is agoraphobic as well as ASD and ADHD. He's not left our home for 4 years. A very nosey neighbour actually asked me when will he grow out of this behaviour 🙄.

You are right. I work with severely autistic children in special schools. I always, always think of their families. It must be very tough 💐.

@MobMoll ahhhhh your neighbour needs a day and night in your shoes, i bet she'd soon change her opinion! Ive been told so many times
"He looks normal!" "Hes so handsome " as if he should be ugly and weird or have horns coming out of his head,then it would make sense!

@onwardandupwards why do these people feel the need to comment ? Sounds very tough,sending you solidarity

this is my DS too. I have had about 10 people send me the link to that new Cambridge professor and it's making my blood boil. He's the exception, not the rule.

It's so hard without support. I work with a young lad like this. He's a young teen and doesn't attend school. Mum is looking after him on her own apart from when I attend for about 4 hours per week. She's regularly exhausted.

You're not UR in the slightest.

I'm autistic (and have ADHD) and frankly I think regardless of the 'we hate functioning labels everyone is just autistic, all together' argument, that it's insulting to your child and to you (or whoever the child's carer or care team is) to consider that we're both 'just autistic together' in any way shape or form or that our life experiences as autistic people are similar.

That's not me being ableist, or thinking that I'm better in any way than any other person who has far higher support needs than me. Far from it. Functioning labels aren't the answer, and I know people also take issue with the terms Aspergers, but there IS a distinction and it shouldn't be swept away or ignored.

Anyway OP. Your child is lucky to have you. I'm sorry that life can sometimes be so bloody tough. It's a lonely space when no one understands. Have you had a look online for some support groups in your area, or even online only? Chatting to parents who 'get it' helps sometimes, whatever the challenge.

My child is autistic too, but like me, and that's hard and lonely enough. So I don't understand what your life is like. Am happy to chat anyway though. I work with and support families who have children with varying levels of different needs and disabilities, so I do have a little more insight from that than I otherwise would have.

Do you feel a different term would help people understand?

There is quite a lot of anger on here when people try to differentiate.

[Flowers] it is the lack of help and support that compounds everything

Bump
I can’t really articulate anything right now but it’s fucking relentless. Scariest part is the unknown and that’s what gets me down the most.

I also taught children with severe autism, in a special school. Some of those patents were going through hell. I think of the one whose son only slept for an hour or two, and screamed all night. Her neighbours were trying to get her evicted because of the noise (which to be fair must have grim for them too).
Basically she worked a night shift and slept when he was at school. So we never sent him home ill, and if he arrived unwell, we just cared for him somewhere where he could rest quietly, instead of moaning about parents sending ill kids to school..

I could post many many examples of how hard these parents lives were. But suffice it to say, when I hear people talk of autism as a superpower, I want to scream.

I've also heard that the autism groups that they used to attend for support, are no longer supportive. They've been taken over by more activist autistic people who really don't want to be associated with those children and parents. So they have nowhere to go.

So uyes much empathy for those of you struggling in similar ways.

YANBU.

YANBU
my dd has a diagnosis of autism but if you first met her you may not realise. Life can be hard for her at times and hard as her parent but imo it does not compare to parenting a child with severe autism 💐

You're not being unreasonable. Being the parent to an autistic child is a hard gig (I know, I am one). I Am also a Speech Patholologist with a caseload of predominantly autistic children and without a doubt there are parents that have far greater struggles raising their autistic child day to day. I cannot imagine the emotional and physical toll some of the parents I see go through, lack of sleep , their child's frustrations, violence, not being able to supper their child when they are upset or hurt, not being able to communicate wants and needs, not knowing what the future looks like for their child. I hear you. The daily toll must be huge and the lack of support draining (in Australia there is much better support systems for autistic children than the UK)

YANBU. It mystifies me if I’m honest, how can something that has such a profound effect on a person’s functioning, akin to brain damage (hope that doesn’t offend), have no ‘cause’ and not show up on a brain scan or tests? It makes no sense whatsoever. Im very sorry you and your son have been dealt this hand, it’s monstrously unfair.

I don't think comparisons or functioning labels do anything for anyone. You could compare all sorts of conditions or disabilities and it's just words. What really matters is the lack of support services and the lack of basic understanding from so many people (especially galling when it comes from professionals who should know better!). It's okay to acknowledge that it's hard and that its shit and that as a society we should fucking do better.

YANBU, my dd13 attends a special school , and has an ehcp , her needs are nowhere close to children in her setting who have profound autism.

This.

we need to be careful not to create a situation that’s a race to the bottom. Everyone with disabilities should be suitably supported in life.

no two families of people with a disability have the same experience but the vast majority will struggle due to the shocking lack of support systems in place

YANBU, not in the slightest.

I have two autistic children (both adults now).

One is very intelligent and articulate but experiences a great deal of anxiety, which really impacts on his daily life. He still lives at home and tbh is a pleasure to have around the house. I find his perspective on the world interesting and refreshing.

My younger son is severely autistic with learning disability, non verbal, cannot look after himself and requires 1:1 care at all times. He's a great kid with an impish sense of humour and bags of energy. But looking after him drove us into the ground as a family. His needs dominated every aspect of our lives for nearly 20 years, wrecked our house, put a strain on my marriage and meant that my older son didn't really get all the attention he needed.

He moved out to a supported living placement a couple of years ago at the age of 19 and it's been the best thing for all of us. He's happy and well looked after, and we have our lives back.

The trauma runs deep. Even now after nearly two years I sometimes have to remind myself I can now visit a friend without negotiating the time days in advance, that I don't have to lock food away, that my belongings don't keep mysteriously disappearing, that we don't have to do two or three laundry loads every.single.day. And that's before talking about the violent incidents (thankfully few and far between).

OP, no matter what age your son is, I'd encourage you to start thinking about transition to adult services sooner rather than later. Talk about it in school meetings and whenever you see a social worker and at medical reviews. Make sure that they all know what you want to happen when your son becomes an adult, whether that's support in your home or him moving out. It will help frame the conversation when he gets to that age.

Whilst it must not be a race to the bottom, the extremities of the spectrum are immense. @DistractMe explains it well. I've also seen what @saraclara says.

But have you done the more than words course? Lol

That probably means nothing to you but my son sounds exactly like your child and any time I manage to see or speak to anyone it doesn't matter what I ask I'm always told to do the more than words course. It's become a joke between me and DP and to be fair I am still on the waiting list for it so who knows it really might be as magical as they think. I'm kinda hoping it is because it really is hard isn't it. It's the sleep that gets me and I can't even risk just shutting us safely in a room and leaving him to it because I wake up to poo smeared on the walls 😞 he does give the best cuddles though

I get that people have an issue with labels, but unless we can name something it becomes very difficult to talk about.

Parents with children who have seriously incapacitating autism now feel like they have nowhere to go (especially online) because those spaces are dominated by adults who have a very different experience of autism.

YANBU, OP.

YANBU. I think additional terminology to differentiate different expressions of autism would be useful. However, I hate low/high functioning as people using it don’t often understand what it means, ‘high functioning’ doesn’t necessarily mean a bit blunt and quirky.

I have a teen DD with demand avoidant ASD who had an awful time in primary including a permanent exclusion. Doing well now with lots of support. It’s tough but not in the same ballpark as your experience OP.

I've nursed people with severe autism for a number of years. I think there's a lack of awareness from the general public about what it is. People think of Sheldon from big bang theory instead of someone refusing to wear any clothing , becoming distressed unless they have a very bare environment. Destruction of property, physical assaults , self harm , headbanging incontinence, smearing , extremely food orientated , sometimes severe epilepsy. Parents and carers definitely don't get enough support.

NHS respite is being shut down! The sad thing is if more respite and support was put in place , they would be able stay at home longer. Things reach crisis then the person ends up being admitted to assessment , treatment/MH units then finding a suitable social care placement takes a very long time.

The government talk about shutting down beds but haven't funded the extra community support and services to keep people out of hospital.
It's incredibly sad.

💐💐 OP you are doing a fantastic job, I'm in complete awe of parents and families.

Parents with children who have seriously incapacitating autism now feel like they have nowhere to go (especially online) because those spaces are dominated by adults who have a very different experience of autism.

Yes, and this troubles me greatly. When parents who are in despair and whose lives are absolutely controlled and limited by their child's disability, are actively told off for being negative, in the very spaces that are supposed to be there to support them, something needs to be done.

I do believe that there has to be a change in nomenclature between the types of autism, so that both groups of people can advocate for their needs without one group being offended that the problems of more profoundly affected people somehow reflect on them.