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

As a mother of 3 young kids who I believe are all autistic. My DD was diagnosed last year , they commented during assessment that she also has learning disability.
DS1 is awaiting an assessment date and DS2 has his assessment coming up soon he’s 2.5. They are all different with different levels of support needs. We met with a neurologist in June who referred us for genetic testing.

It really doesn't help when people inside the system have these attitudes.

I am also inside the system and when I was assessing and care planning I can honestly say I tried my absolute best every time. Once I had some experience under my belt I was second to none at what I did. Many carers still were furious with the outcome. And 99% were absolutely correct in their fury.

I did my best but so did most of the crew on the Titanic. It's not their fault that the iceberg hit and its not my fault that the systems shit.

There is no point trying to make out that what I was able to offer was enough.

Just to say, my daughter’s school was amazing and supportive. I genuinely found the tone of that post baffling as nothing like my own experience.

Wow i went away and came back to a community of parents and carers just like me,living my life. This is why i made this thread,i feel so unheard, i haven't met anyone in my life who has a child like mine, who lives like we do. Theres so many of us,it makes me feel less alone but also incredibly frustrated and sad that we have all been left to manage our precious children ourselves until burnout or death.As if this isnt awful enough we then face further suffering by losing them to sections and residential places where all rights as parents are stripped from us. This happens as there is No respite services, the ones that were there and doing the minimum have mostly remained shut since Covid. WE are being ignored by the Government who think an umbrella term of Autism means the same care applies to all Autistic children and adults. Irony is there is ni care ,help or respite no matter where you are or how you are termed.
I could scream and scream out of the frustration i feel,but im scared id never stop.The system is failing,you can be as strong as you like but living like we do would break anyone, and i mean anyone.

Hans Asperger was troubling in many ways: see e.g. molecularautism.biomedcentral.com/articles/10.1186/s13229-018-0208-6 and www.bps.org.uk/psychologist/aftermath-hans-asperger-expose

Now people on the autism spectrum are referred to as such.

I hear you @That80sgirl

Maybe because there is no such thing as mild autism!

The ones that get to go to school are the lucky ones

My brother is epileptic, autistic and has a learning disability. He's in his sixties. I would describe the family's decades of looking after him (he lived at home with mum) as being exhausting. He ruled the house, had violent outbursts, set fires if left alone and mum walked on eggshells with him. Once mum died social services set about looking for somewhere for him to live. They tried placing him with several carers, but nobody could manage him, and he ended up in hospital after a fall. Eventually he was placed in a home for people with Learning Disabilities. I cannot say how much his life has been changed for the better. He has friends, is safe, has structure to his day. He is clean, fed and happy. It has been the making of him.

This is such a moving post

Thank you for caring about that mum and no doubt countless other kids like my son,made me cry thinking of her not sleeping and being alone working trying to survive and you at the school showing her compassion by knowing not to send him home. Those six hours my son is at school, i pray they don't ever phone me,its like another person said uppost,i can't relax anymore, ever,theres a deep rooted trauma from trying to survive another day knowing theres no end and no break,no mental peace.

Saraclara ive read your posts on many Autism threads,you are a good person.

Autism has a troubling history in terms of definition, Kanner, refrigerator mothers, Asperger. We do need to find a way, I think, to include everyone with a diagnosis, wherever they fall on the spectrum, perhaps by sub categorising. This would possibly need to be fluid as a person ages, and inform the care and support needed.

Or, maybe we should abandon labels and focus on need.

I don’t have a child with autism but I do have a disabled child. When talking to some other knackered, stressed parents at some activity it ended up in tears when the subject of labels came round. Needless to say we have all been told the label wasn’t important or helpful and then had to ask for support without being able to label anything. No question we loved out children and wanted the best for them but we were grabbling round in the fucking dark cause we couldn’t even google what we needed to know.
anyway my child has the kind of disability that evokes out pouring of sympathy and prayers (not that they or I want it) but to be doing all this without empathy from everyone else is a level of shit I don’t experience so am grateful.

OP I just want to say, as someone with an ASD diagnosis that would previously have been Aspergers, I completely agree with you.

I actually feel embarrassed and like I'm stealing or appropriating something the way everything is categorised together now. My struggles are what you'd expect - social problems especially during adolesence, performance and behavioural issues at work - but I have a degree, own a home and am married.

A previous poster has just said that there is no such thing as "mild" autism but I very much disagree. If we're all grouped in together then clearly whatever my issues are are extremely mild in comparison to being non-verbal, unable to process external data, incontinence etc. Yet it's people like me who unsurprisingly dominate the narrative - of course they do, they're the only ones who can!

I'm in my forties so got used to thinking of myself as having Aspergers and tbh I still do.

My huge sympathies to you and any other struggling parent and I'm sorry that the spaces that should be supporting you have been overtaken by the current narrative.

Yes there is 🙄

There is profoundly disabling autism that means you will never lead an independent life and always be at the mercy of others.

How do you determine levels through. My child would be considered mild. We get little support, people won't see our need for support.i haven't slept a full night's sleep in a decade due to the child needs. Every single day is stressful over Jay may happen next. I'm screamed at, bitten, kicked on a near daily basis. But the days I'm not I'm waiting for something to trigger a meltdown so on tender hook just in case.
Child is totally awar that they are different and just wants to not struggle and be like the other children. Child is on verge of a breakdown but their is no support. I fear on a daily basis that they will hurt themselves or others.

My child is already seen as mild autism or not deserving of support. But I our situation really that different?
I would see it as co mobilities.
Child a is autistic but academic
Child b is autistic, dyslexic and hyper mobility
Child c is autistic, incontinent and intellectual disabled.

All autistic but life i very different due to unique profiles

@That80sgirl thank you for your lovely comments. That's so kind of you. I loved my job and the kids. The smallest amount of progress or new communication, seeing a child open up or cope with and even enjoy a new experience...it was just so rewarding. But I was so, so aware that waving them off at the end of the school day, going home to my non-complex DDs and eventually retiring from my work, was a luxury that the parents didn't have.

A lot of what I did with the children was in a bid to a) relieve their stress and anxiety and b) make their families' lives easier and more pleasurable. Working towards a particular child coping with crowded places for instance, so that for the first time, the whole family could go to the theatre to see a pantomime. It was something his mum had expressed that she'd love to be able to do, so...

Ironically, my toddler DGD is showing signs of autism. So those parents are in my thoughts again, and I have to worry for both DGD and my DD and son in law.

A close friend of mine has a 8yr old son with severe autism who is very much like how you describe your son. He's her second and she and I both have two kids of almost exactly the same age, so have been on our parenting journey side by side. To see how much those journeys have differed since her son's condition became clear (which was early, when he was about ten months) has highlighted to me how difficult it is for parents of children with severe autism. I've known her for 30 years and these past eight have changed her beyond all recognition; both because of her son's condition but also because of how little help she and her family have had. Everything has been a struggle and a battle and she looks 20yrs older than she did a decade ago. Her older daughter is broken by it due to the fact that her whole life is dictated by her brothers condition; like you say @That80sgirl my friends son hardly sleeps so keeps the house awake. My friends marriage is on its knees, she's had to give up her job... it's changed her life beyond all recognition and she has had so little formal support. It's so sad and frustrating to watch. Sending you strength and love @That80sgirl. And to your whole family.

Severely autistic children can also be gifted

@Whatevercanbedone I think your situation would be exactly why a person’s needs should be the focus, rather than a broad label. I don’t know the answer. I only know that emphasising my own child’s LD attracts much more notice from professionals/services.

well I'm diagnosed with autistic traits and severe ADHD, so guess there is such a thing as mild autism, I would never have the arrogance to suggest that I am the same as my cousin, who requires 24 hour support and has severe LDs. That's why I try to steer clear from so-called autism activists

YES THERE FUCKING IS! And everyone on MN who beats out this BS constantly can fuck a cactus because its sickening.

It must be so all-consuming and exhausting OP. 💐

I don't have kids but have looked after someone (24/7) with challenging behaviour (aggression), faeces smearing, panic, inability to speak, delusions etc. with another condition and it consumed my life for years. The only thing that really helped in the end was getting benzodiazepines (lorazepam) prescribed but I'm sure most parents of ASD sufferers have already tried this, if benzos are licensed for the condition.

It does seem like mild autism being relabelled would enable people to understand what severe autism really is.