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

YANBU and I’m sorry, it must be so hard.

I think there should be a change of language around it somehow; to make the different types/severities clearer. It feels akin to only being able to use the word “fruit” to describe all fruits when they are so different. None are more or less worthy but we need to be able to talk accurately.

My daughter has autism and DCD but is able to express herself and although she has difficulties we often count ourself lucky, knowing other children with more complex needs. I think you are definitely not being unreasonable, there needs to be a way to split the spectrum as the support needed is so varied and difficult to access. It's impossible to compare autistic people, like amputees, it's very different to have one amputated finger to both arms and legs and it makes a significant difference!

Most definitely, parenting someone with very severe autism and LD is very different it takes up all the parents energy. There's very little respite then as the child reaches puberty and starts to become larger it becomes more difficult. I myself have been bitten , kicked someone I know had their wrist broken , another had their nose broken and internal bleeding . Many don't sleep throughout the night , I don't understand how the parents managed for so long, they are amazing.

I don't understand why severe and mild autism are both called autism when the manifestation of the traits are so vastly different.

I think they should have different names.

YANBU

Huge respect and love to you. It must be incredibly hard. I also work with children like you describe, I still can't imagine how relentless it must be looking after them all the time. I honestly don't know how you can.

I’m honestly not arguing with you, and I’d never suggest that I know better. Genuine, 100% interested question… do you feel it is his autism or his learning disability that impacts him most?

I’m autistic as are two of my dc. My experience is that being verbal and not having learning disability doesn’t mean they don’t have high care needs. I wonder whether the difference is the learning disability and not the severity of autism?

I’m genuinely interested in your perspective on that point of view, not trying to be goady or minimise your experiences.

The lack of respite, support and what happens post 19 is appalling. The lack of proper changing places is also appalling. Obviously these issues dont just affect autustic children and their carers but also the carers and children of other very complex disabilities.

People are on their knees due to a totally hollowed out social care system. I know so many people awarded PA hours that cant recruit PAs as they dont exist. I know a few charities that are amazing, but my god son aged out whilst waiting for his respite spot.

YANBU
My dd (13) has Down's Syndrome and Autism - so a severe learning disability. The lack of sleep, meltdowns, violence and controlling OCD are very difficult. And yes, the lack of respite is criminal.

you really arent being unreasonable.

My partner kids and myself all have autism diagnosis, and although we all have our own difficulties and struggles, it is no way comparable to what you and others on this thread go through.

I also find the 'only speak in a favourable light' matra hugely insulting for those for whom it really isnt a great and amazing thing - its not 'ablist' to speak the truth that life is extremely hard for the parents, and no doubt severely hard for the person with the condition. And dont even start me on the self diagnosed wanting to join in with all the 'autism specialness'

If people's lived experiences are supposed to be believed, then why are they always trying to shut down the experiences of people that dont have it good at all. Its no reflection on me if someone else is suffering, I just feel very sad that they are not being heard

What troubles me is the way that seemingly no one is allowed to admit that it's shit, a lot of the time. It's not the done thing to focus on the horrific downsides. People refer to it being a 'superpower' and refuse for it to define the person or it be a negative thing. That is simply not everyone's experience with it

YES THIS!!

My daughter, a young adult now, is autistic. She would be classed as ‘low functioning, I suppose. I have found it helpful in explaining to others to stress that she has a profound learning disability. I don’t know how it would be possible to separate out the impact of each, though. Her LD seems to me to be part and parcel of her autism.

But we can’t pretend that some people are not ‘needier’ than others. That a person who cannot talk or in in nappies doesn’t need more care than somebody who can speak and is toilet trained and won’t seriously injure themselves if left to their own devices.

It’s fashionable now to say ‘all feelings are equal’ and ‘every emotion is relative and valid’, but I don’t feel that way. By saying the two examples above deserve ‘equal support’ you’re not caring for both people, you’re asking for something which is unrealistic. People with greater need should have greater care, that shouldn’t be controversial.

Yes, the self diagnosis is deeply insulting. My child will rely on others all her life. If I think about the future it is genuinely terrifying. Although, she has been referred to the LD Mental Health team now she is an adult, and I have found them more helpful that anything offered when she was a child.

So what was wrong with 'Aspergers' as a term to describe the verbal and high-intellect kind of Autism?

I actually think families like your have been completely failed by the current obsession with inclusion. This stretches to the language used in diagnosis. I don't know the historical background of Asperger's, I understand there are negative connotations around it but I think completely taking that away and not replacing it was wrong. I see this often on this forum when someone says their child is high functioning. They're pounced on and told there's no such thing. This narrative is not helpful, especially when looking at the context of your life and how much you're struggling. Im not saying parents of high functioning kids aren't struggling, but this is really a very different type of struggle.
Not to mention how it has minimised the really really difficult nature of the disorder and the life many families like yours lead. I get that it's a spectrum, but not having the ability to name where you or your child is on that spectrum isn't helpful.
I hope you can get more support and help.

I have a 17 yr old foster child with hydrocephalus, severe learning disabilitues and severe autism.
I also have a birth child with high functioning autism and their presentations are poles apart so yes I agree the extremes need distinguishing from each other as there is little understanding now of severe autism and what it can involve.
Thankfully our 17 yr old sleeps ok but the hardest thing for me is the meltdowns,aggression and challenging behaviour we deal with on a daily basis .

My DS has ASD with specific learning difficulties and though things can be difficult at times he is growing in independence.

Parenting a child with severe learning difficulties as part of their ASD is different to my experience and one which I imagine is much harder.

Last time I went to a parent support group a couple of the helpers described how they felt they had ASD. It was done very positively but it almost felt like they were minimising how difficult the experience could actually be for some parents.

This. I feel it's the same as when someone with cancer gets told they're strong. It's bs. So many people tell my daughter that her severe, debilitating dyslexia that has effected her speech and all functioning, is a superpower. Same with her ADHD. Her meds are a superpower. Piss off with the cuddly language. People have no idea. I'm so angry that parents of autistic kids can't have a rant on here without someone up their throat saying they should be more understanding.

This.

You can't even say "mild" or "severe" without getting yourself into trouble. I have had my head bitten off twice for saying my son has mild autism. Now I have to tie myself in knots to describe it accurately without causing offence.

It's doesn't happen with other illnesses either. People say mild/severe arthritis, asthma etc. My friend has (what she describes) as mild cerebral palsy and tells me she has never had an issue with that description.

Agree with this. My niece is severely autistic, non verbal, extremely challenging behaviour, it wore my sister and other family members out until she went into supported living in her early 20’s. But it took years of planning, appeals, worry to get her funded and to where she is now settled. Family still worry (she’s very anxious with ocd, can be v challenging in public etc) but it’s as good as can be. She can be v loving, she’s beautiful and we all love her but supported living has been best with various day services, medication to help anxiety etc. v limited diet but docs always said don’t worry it’s amazing how healthy one can actually be on three beige foods . One thing that’s hard to understand is why she is forced by law to endure periods. Painful and confusing and hard to manage, she’ll never be or want to be pregnant, but apparently her ‘right’ to have them outweighs the actual discomfort and anxiety it causes her she has no clue what is happening to her body poor thing. But I’m no expert.

@Hendric Cerebral Palsy is diagnosed in very helpful and clear severity levels. Many parents and teachers would love this model for ASD diagnosis.

I agree that the term Aspergers was helpful in distinguishing between autism and autism with learning disabilities. The issue is that Hans Asperger irrc was supposed to have collaboborated with the Nazis and the distinction presumably meant if you didn't have Aspergers you were "mentally defective" and got rid of. However, there needs to be some distinction and some terminology.

My dd presents much more with asd than ds, but I honestly couldn't unpack her learning disability from the autism: repetitive, obsessive behaviours, lack of sense of danger, violent meltdowns. A lot comes from her lack of understanding of the world and lack of executive function.

Surely you could say this about any number of conditions though? I have a colleague with Epilepsy that is very well-controlled, as long as he takes his medication he is able to live a completely normal, seizure free life. Contrast this with someone in my family who had up to 10 seizures a day, had to have a completely adapted environment, could not work, socialise or be left alone, frequent injuries and complications as a result of seizures. But oth these people have Epilepsy. Should this terminology be changed too?

The way people use learning difficulty and learning disability interchangeably is also infuriating. I've seen it on the BBC repeatedly for example. There is a huge difference between the two. To be fair I did the same until my friend (RNLD) caught me one day and gave me a lecture. Later I trained as a professional in health and social care and its shocking how often I come across it among other professionals. I understood why my friend was so annoyed about it.

Sorry I know its not directly relevant to your post but its another area where language is failing us.