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

I have no life anymore, my family dont have a life, each day is a chasing survival game,chasing my son,trying to keep him safe or us safe or stop him destroying the home,we gave up the battle that is going out long ago,im covered in scratch scars,my hair has thinned,skin greyed,eyes like saucers,my other children are unintentional carers, wise beyond their years.i feel like a failure but only because we've been so miserably failed, our sons Autism is the one noone wants to talk about,the one that isn't a gift,the one the professionals and government easily ignore because its all too uncomfortable.

@That80sgirl I am so so sad to hear of your situation. How old is your son? Does he go to school? My child has challenging behaviours (as they say) but is not violent. That is hard enough. I feel for you & hope you get the help you so desperately need. It is a disgrace that you are being driven to the brink. Our children are failed and we are taken advantage of because we care for and love our children. I am thinking of you.

You are doing a good job. I know its harder than you could ever have imagined, harder than most parents could even fathom, but you're doing it.

I know it must feel very lonely. I tried taking my child to a special needs group once but we were made very aware they were uncomfortable with us being there. Too special for the special needs group, before I had my child I couldn't even conceive of that. We were that special needs parent in a room full of special needs parents.

It just sucks, it's not fair.

*Yes, sensory processing disorder used to be a separate diagnosis but is now included in the diagnostic criteria for autism. my first child received both diagnoses, my other a few years later, just an autism diagnosis.

Once upon a time, a very long time ago, it was seen to be part and parcel of autism and the DX procedure included sensory questions. But that’s the world of Autism isn’t it. The people who spend their days thinking about it in order to try and explain it are always changing their mind about it. 🙈

I make up my own labels and the one I prefer is ‘his autism is about as bad as it gets’. it says it all and Im never misunderstood.

I get you, currently awake as my son randomly processes his day until all hours and needs me to be near him at all times. I’m so worried that in two years when he leaves school there will be nothing for him. He isn’t ‘practical’ hates getting his hands dirty nor is he computer smart enough to program. It is a never ending head fuck when you get competent functioning adults complaining about no one understanding their autism and how it affects them and it makes their life so very hard when you have an adult child who can’t be left for 1 minute. I’m not diminishing your difficulties but it’s really really annoying.

I really don't think its helpful to say you can avoid MS and that's why you can't liken it to ASD.

Taking supplements and eating healthily are all well and good to reduce a risk but its mainly genetic much like ASD so its unfair to imply it can be avoided.

@NewNovember yes there is such thing as mild autism! Of course there is! It's not taking anything away from you or your kids (whoever is diagnosed with autism and still functions pretty much independently) to say there's such thing as mild autism, Asperger's, or even to re- label with types. It takes away from the people who are severely affected by autism to say there's not! It keeps them hidden and their families unsupported when people say shit like this. Sure, it's all autism, just like diabetes is all diabetes, but type one and type two (and pre diabetes) are miles apart from one another.

Honestly, it pisses me off so much when someone says "well I've got autism and you don't know how severely affected I am, it's actually very severe!" People who even have an inkling of what severe autism is will recognise the absolute irony in someone being able to bleat that sentence at you.

Mild is how you see it though. If it was mild, do you really think people would bother getting diagnosed? I almost killed myself not long before being referred for assessment.

I'm sure it effects you but on the scale of how severe autism effects the person , society and their families is entirely different. You are up posting on MN advocating for yourself, these people we are describing would never be able to do that. A person with severe autism might be incontinent, some I know can force themselves to be sick and like the sensation of rubbing the vomit in the skin causing breakdown , even got sepsis and nearly died. Some will smear feces extreme aggressive behaviour requiring 5 adults to restrain, some will live in hospital for years because sourcing a bespoke placement is extremely difficult.

Some will refuse to entirely wear clothes and can't have things in the environment so will destroy property. I'm sure you have difficulties but it is entirely different to others who have no capacity to advocate for themselves and struggle with all aspects of ADLs.

There is absolutely no such thing as “ mild autism”. You have to meet a thread hold to get a diagnosis. It impacts lives massively. Far too many people with autism end up over medicated or in hospital. It impacts lives massively which is why it is referred to as an invisible disability and protected as a disability.

Truthfully I agree they an umbrella term that can mean so much for such a range of cognitive abilities isn't really helpful.
Our son has autism along with LD, and possibly ADHD too. Attends a special school. Life is hard and at times has been really hard.

But he is sociable, capable of so much and I believe has an independent future.

I see kids who are fundamentally not able to function without 24/7 support in his school ( different classes though as based on levels and types of need ) and the same diagnosis is there.

It's really not useful or nuanced - more descriptors or scales ( even if fluid over time) are needed

My child has had repeated hospital admissions and it is impacted her life massively. That is not mild hence her having full PIP.

@SouthCountryGirl

I'm sorry you've felt that way. Nobody should have to feel unsupported and not understood. I hope that your diagnosis can help you get some support, even if that's just other people around you understanding that you may struggle with things. My daughter is autistic and she often feels despairing about how different she is to her peer group in terms of what she enjoys and how she perceives situations.

My point about mild and severe is just this. You are autistic. My daughter is autistic. No dispute. OPs child and the young people I look after are also autistic. No dispute. Most of them are simply diagnosed autistic. But there is such a difference. You have the capacity to type this to me. To read my response, feel a certain set of emotions about it, refer them to your situation and apply them accordingly. You were able to recognise that your difficulties and your experiences of life were potentially at odds with what your expectations or the expectations of everyone else were. This made you feel negative emotions that you were able to recognise as such. You were able to understand that there were things you could do which would be a danger to your life. You were able to understand that the absence of life was a thing and it meant an end to everything, both good and bad. And crucially, you were able to reason.

This would not be the case in someone with severe autism. Categories help. And they'd help you too. It wouldn't take anything away from you. It would help to assign services and support and have people trained and experienced in a particular level of presentation delivering that support to the service user. Someone who had only ever experienced autism like yours or my daughters would be out of their depth if they suddenly had to support OPs son.

NoFux

You are misinformed. Many people you write off as mild struggle to

“read response”
“feel a certain set of emotions about it, refer them to your situation and apply them accordingly”
”able to recognise that your difficulties and your experiences of life were potentially at odds with what your expectations or the expectations of everyone else”
“understand that there were things you could do which would be a danger to your life. You were able to understand that the absence of life was a thing and it meant an end to everything, both good and bad. And crucially, you were able to reason.”

No categories wouldn’t help as you’d get similar, minimising and dare I say it ignorant views such as that written above. Also learning disabilities are separate to autism.

Missfliss, I completely agree , my daughter attends a special school, for children with autism, and they are split into different classes . My child can access national curriculum subjects albeit roughly four years behind her age . Some children in specialist settings have no means of communication, and extremely challenging behaviour.I think it is also often forgotten, that young people who are non verbal , can also experience extreme anxiety.

This is what I think is the key.

narrowing the diagnosis into smaller boxes risks even more people falling through the net and not getting support because the nature of autism means that people won’t fit neatly into boxes.

in my dream world everyone with autism, and their families, would get the targeted support specific to their individual needs and not just the diagnosis they have.

when you have met one person with autism you have met one person with autism

But we need language to make ourselves understood, labels are to aid understanding, am umbrella term. It doesn't mean that it is a rigid diagnosis.

I don't like the term mild, but there does need to be a term to differentiate. It is disingenuous and actually offensive for those that are able to articulate their autism to demand and change the language and understanding of those that can not.

@Ca1mingC1arySag3 I have an autism diagnosis and of course it's mild compared to OPs child.
I mean here I am posting on MN as are you.
To say otherwise would be completely incorrect and also trying to appropriate someone's severe disability and for what?

From the OP:

This is not a thread to argue about how less severely autistic people are still affected in other ways ,we know this!

The theme of this thread is what caring for the most severely affected children does to parents. How every second of their life is dictated by caring for their child, often risking physical injury while doing so.

I don't know how anyone can read OP's later post...

"I have no life anymore, my family dont have a life, each day is a chasing survival game,chasing my son,trying to keep him safe or us safe or stop him destroying the home,we gave up the battle that is going out long ago,im covered in scratch scars,my hair has thinned,skin greyed,eyes like saucers,my other children are unintentional carers, wise beyond their years.i feel like a failure but only because we've been so miserably failed, our sons Autism is the one noone wants to talk about,the one that isn't a gift,the one the professionals and government easily ignore because its all too uncomfortable."

...and think that there's space here to talk about functional autism. Of course the latter is a problem, of course it can be distressing. But for once, let parents like OP have a space to talk without interruption.

@saraclara as always, articulates my frustration so much better.

also trying to appropriate someone's severe disability and for what? @FrostyFifi I agree and I don't understand it

And OP, words do shit all, but you have my thoughts, respect and love. Your posts are difficult to read, and yet you are living it. I also think it needs understanding that you don't get the choice.

Down syndrome diagnosis does not mean everyone with DS presents the same.
I have met many people with DS and some work and some will never work and need 2:1 care.

But all have diagnosis of DS.
Someone I know if you met them on a calm day you would think them delightful. Most days the family can't leave the home as the risk to others is too great. The family have bruises and cuts etc.
But that's not what we see with the DS appearing on TV.

They all have DS but how it impacts them is different. But we don't rename it at the more functional level it's still DS.

The lack of support is the issue.
We are also broken and struggling everyday. The difference is we would be your understanding of mild because of how the child presents in public. you don't see what it takes before going out, or the repercussion of that we have later.
You don't see the marks from self harm or the marks I carry from being the target for the outbursts.

Pre melatonin I maybe got 1hrs sleep a night. If child hadn't been medicated I think I would have been dead by now.

This doesn't change that OP situation is also shit. That the family need support. Support needs will not be identical, presentation of autism and support required will be different.

But attacking families like us and making us feel like our diagnosis isn't real isn't helpful.

I agree with this excellent post - from what FrostyFifi says, I am in a similar place on the spectrum.

Fundamentally acknowledging that some peoples need is even greater doesn't have to equate to denying that others have real difficulties. It doesn't have to take away from those.

Giving people a space to acknowledge that their existence is truly bleak due to the severity of disability is it saying that anyone else's experiences are therefore ok.

There does need to be recognition of impact degrees in order to create differentiated support.