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

How is that relevant to the thread other than example of how these conversations are made more difficult by people with less needs jumping in and making it about them?

@Moonicorn but who decides? Do you get to choose my level of struggle? Or can I decide for myself? It's concerning when we start creating boxes and deciding who's worse than who. If someone can't verbalise their level of struggle what box do you put them in?

We're talking about the parents' experiences on this thread. So they can decide for themselves what level of struggling their parenting of their very disabled child is.

I'd put them in a box with a higher level for need than somebody who can describe it.

Obviously.

This is not at all controversial for any other condition.

@Hendric I was making the point about the us and them approach to autism. Maybe your right , perhaps my post is distracting from the aim of the post which really wasn't my intention.

My DD has ASD. My cousin, now deceased, also had ASD.

They are probably about as far apart as it is possible to get, and still receive the diagnosis. There are times it boggles my mind that they have the same 'condition'.

My DD would be the absolute definition of 'high-functioning'. This is not to diminish that there are real issues and that her life is impacted by these, and will continue to be, but her life and our lives with her are unrecognisable when compared to my Aunt's and my cousins.

In contrast, my cousin was 'severely' autistic. Doubly incontinent, non-verbal, no understanding of instructions etc. He absolutely dominated the household in terms of his needs, for both his parents and his siblings. How my aunt coped I will honestly never know.

Having grown up with that as my understanding of 'autistic', I never, ever dismiss what that might mean for the families. And I do, frequently feel a complete fraud as a parent of an autistic child, because there is no comparison at all.

Whilst I appreciate the 'spectrum', I honestly do think there needs to be better language for encapsulating the differences. It borders on ridiculous pretending they have the same diagnosis, and it isn't helpful in gaining support for eother level, or anyone in the middle. Honestly, in a certain sense, people like my daughter, and our family, are not good exemplars of what 'ASD' can means, and yet, by the very nature of it, she (and we) are the 'autistic' example that people are most likely to meet.

I do wish people would just bugger and off and for once just leave this kind of thread to those who are living it whilst looking after their child.

In fact I wish the would just fuck off. Bugger off is just way too polite under the circumstances. They really do need to read the room and if they aren’t able to they just need to take it on board that now isn’t their time or place.

From the OP:

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.

OP can absolutely say what her struggle is. It doesn't threaten any other autsitic person, not does it minimise their own experience. OP just wants to be heard, and for her DC's and her own struggles not to be negated by autistic adults who don't want her voice to be heard.

This is a story I'm hearing again and again from parents who no longer have a space to vent their stress or to look for support from others. They used to have those places, but now they're not welcome.

Ffs the fact you are even posting on MN able to read , write and process that information shows you are much more able than a number of people with ASD.

To slightly derail, My child does have care package with payments from our local authority, but it is nearly impossible to get appropriate Carers. The agencies I have used in the past have been woeful. I feel that, while possibly well intentioned, the onus on parent/ Carer’s to source care & support is just another stress on them, and a way to shirk responsibility by LA/ Government.

While some autistic posters on this thread have been wonderfully understanding of OP's situation, others are kind of proving the point she's making.
She can't speak out about her experience because some other autistic people take it personally.

Also, if you are reading and understanding this thread you have no idea of the struggle my daughter faces. The world is a scary and incomprehensible to her.

I've always found it odd in CSC that you can't access directly commissioned care. I presume your child is under 18?

Direct payments are basically useless in adult social care at the moment as the already small pool of PAs has dried up to basically nothing. It's causing huge issues.

Definitely
And to save money. If you can't find adequate care for the money, it's YOUR fault, not local services.

@Feefee00 thank you for highlighting my point perfectly even if that wasn't your intention. I am going to bow out as this wasn't intended to derail the original conversation but I accept it has and for that I apologise. (To the op not you feefee)

And to rely on charities for the infrastructure is awful

The irony of this is mind blowing.

My DH has ASD and I have autistic traits currently debating whether to get a DX but I don't think I will bother. Me and my DH are functioning with all our ADLs hold down good paying jobs. Manage to parent well. Our struggles compared to people with Autism and severe learning Disability is very low. We don't really struggle at all and it's disgusting to try to compare between the two
I get angry when HFA adults try to hijack everything for themselves and minimise the impact autism and severe learning Disability can have on the person and their families.

It’s a difficult topic. My daughter has autism so I do have some knowledge.

I also listen a lot to my friend about this issue as she has 3 children, 2 of who have autism. One has what many people here would call profound or severe autism, very similar to how OP describes her child.

The other would be described as more ‘high functioning’ by people here as he’s a bright lad, but has other struggles. He did attend a mainstream school for a short time when he was school age, with very low attendance, although he didn’t actually cope there at all. He can’t/won’t go out alone, sleep alone or make food due to high anxiety/sensory issues and being unable to follow instructions well. He doesn’t do any self care properly, has huge meltdowns, periods of not being able to talk, lots of sensory issues, food issues, no friends, repetitive behaviours, didn’t get any qualifications despite being academically able and looks likely he will never work.

My friend feels very sad that people want to tell her that his autism ‘better’ than her other child’s and I think as a mum that sees the reality of two very different kids with autism, she’s allowed to feel that way. She feels his autism is severe due to the effects it has on him and the whole family. She personally wishes that people wouldn’t compare.

I totally agree.
And there are always people who want to think the fact the OP is not getting the help she needs is purely because she is not aware of different sources of support. When the reality is that support is often not available. There is no point having monies for carers if there are no carers to do the work or no residential placements.

Many people with autism and learning Disability cannot verbalise or properly understand their feelings. They can live in frustration unable to understand the world , I'm sure you have your own struggles but you are able to write on MN and advocate for yourself. Many people with autism and severe learning Disability cannot do this there is no comparison between the two.

@Hendric My daughter is an adult. I use Carer’s I know personally with experience of autism/caring. However, I think the LA should be able to provide a list of appropriate agencies. It does seem that anything that is provided on the name of choice and independence is actually a way to push responsibility and care on to parents/ Carer’s. We look after our disabled children, even when adults because we love them. I feel that is taken advantage of in a cynical way.

I cant believe parents are supposed to find the carers/PAs. How is someone caring for such disabled child supposed to have the time and energy to do that.

It is hard. In fact I think it closes down the ability to talk openly about it. I have two kids who just met the diagnostic criteria and one who was diagnosed at 3. Non verbal till 7. How can i ever explain his presentation of Autism compared to his siblings? Truefully you can't without offending someone. His ASD effects him severely but I can't say he has severe ASD as it will offen someone. Imagine if if say you child has ASD and someone expects he is this geeky kid who can recite the phone book then they meet this whirlwind of caous. It's another way to feel like don't git in the NT world but you don't fit in the ND either some days. I feel very confident talking and advocating about my kids. But I would never feel comfortable advocating or talking about ASD. Our experience of ASD is all wrong. That's true fully how I feel.

Hmm I’m not sure, my dd is autistic, she has extremely challenging behaviour I struggle to take her anywhere as she runs off, has no danger awareness runs into roads, would go off with anyone and tries to. She tries to knock on doors / get into cars, she has horrific melt downs lies on the floor screaming, jumps up and down, she is physically aggressive towards people and will lash out at strangers, she won’t walk certain places for example if there is road works she won’t walk down the street she will have a melt down and demand we go another way.

She can’t be left alone at all she had a full 1:1 all day in school including at break and lunch time, she would attack teachers, she escaped the school despite having a 1:1. She is strong and took 3 members of staff to get her back in and she bit one in the process. She required 3:1 for school trips. She had no friends ever at school as she wouldn’t interact with any other children and only spent 25% of her time in the class room (rest at her work station with her 1:1) she’s significantly behind children her own age, she can speak but her speech is extremely limited and she doesn’t understand a lot of what is said to her, you can’t hold a conversation with her but she can’t answer some simple questions, but mainly uses echolalia she still has SLT.

She needs help with personal hygiene and had an intimate care plan at school and at home she needs bathing/ dressing/ teeth brushing basically help with all aspects of care. She is aggressive to her siblings and doesn’t interact with any of us. She doesn’t sleep until 1/2am But I was told she’s not “really” autistic because she can read and doesn’t wear nappies 🤷‍♀️ and apparently I have “no idea what’s it’s like to have a child with REAL autism” Which I think is pretty unfair, its not a race to the bottom like someone said.