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

Yes, the lack of coordination is a huge issue.

If she is an adult then she is legally entitled to an assessment under the Care Act and then to have the eligible needs identified in that assessment met by the LA. You are legally entitled to arrange this support for your DC via a DP (as long as you're an "appropriate" person, which you almost certainly are).

Ring you local adult social care and ask for an assessment under the care act. This is their bread and butter, I am surprised you have had so much trouble!

@Hendric That is helpful. When the LA finance dept recently checked our DPayments it was mentioned that my daughter is still on record as under Children’s Services (although they know her DOB, and Adult LD MH team involved via GP referral). I will contact SS and ask for an assessment as an adult. Thank you. (See what I mean about no joined up services)

Sorry for slight derail

Please don't be offended by my question, I know a bit about autism, speciallly the high functioning part of the spectrum. But why do children who are non verbal and act like the OP describes are put in the same category as someone who, for example, has specific interests and doesn't understand social clues? What is the common ground? Repetitive behaviors? Stims?
I hope I'm not oversimplifying. It's just that it doesn't even sound like the same condition.
(By the way, I read an article about the man who received the first diagnosis of autism. He used to speak and have a reasonably independent life. Completely different from the OP's DS)

To go back to@That80sgirl original point, looking after someone with autism and associated LD is lonely, relentless hard work with little or no thanks. It is not just the physical needs of that person, the personal care and so on. It is the admin & paperwork, the justification required for every accommodation. It is the intrusion into your life from all the agencies required to help. It is having to trust strangers to look after your vulnerable, non verbal child. It is the heartbreak of seeing your friends’ children of the same age going to college, leaving home, cutting ties and your child is at the level of need of a small child. It is the impact on your marriage. Having to accept pity from your friends. It is fear for the future. It is accepting you will never have grandchildren. Each stage of life, however much you love your child, brings new loss. Love is all, but it is at such cost as a parent.

What I tried to say, clumsily, in my post is better shown here: how can these two people receive the same diagnosis? Why is it considered the same condition?

It's the same with everything though. I have a rare birth defect which amongst other things causes Autism. I belong to a Facebook group for people and carers of children with this condition. Some of those children are like the OPs son and some have minor issues.

In the US when they got rid of Aspergers, they started using 'levels' of autism to describe support needs.
So level 1 is someone who might have some trouble with social interactions or planning and organisation that hampers their independence and needs some support.
Level 2 is someone needing substantial support, a child who might need 1:1 at school or a special school for example.
Level 3 is someone needing support at all times, non-verbal, frequent distress etc.

Focus on support needs seems like a more useful descriptor than just having one diagnosis of autism and is possibly more objective than mild/severe descriptions.

One of these people has a learning disability and the other doesn’t. The lack of understanding comes from learning disability rather than autism.

The diagnostic criteria for assessment are the same. The two people may both have sensory needs, stim, not display reciprocal interaction, have meltdowns… the difference is that one has a learning disability.

Two people without learning disability can be very different. I have an autism diagnosis and also adhd. My ability to remember and organise is awful, things are chaotic and haphazard. A friend of mine also has an autism diagnosis and also OCD. She is obsessive about organisation, needs to know exactly what time everything is happening and will melt down if timings are out.

Other conditions impact the way autism manifests.

My trust moved over to intellectual disability instead of learning disability for this reason. I don't quite know if I prefer the terminology, but I do understand the reasons for it - but doesn't quite work when the neighbouring areas still use LD as the term!

I'm autistic, as is DD2, but obviously at what I shall no doubt incur the wrath of several keyboard warriors by referring to as the "higher functioning" end of the spectrum. I work with adults with intellectual/learning disabilities, and obviously many of my clients have multiple co-morbid conditions and autism is quite frequently one of them. How it affects me is completely different to how it affects some of my clients who have autism alongside intellectual disabilities - and, while yes, I can speak (apart from when I melt down and my speech fucks up and becomes an echolalic mess) fairly eloquently and explain that one reason that someone might be struggling to cope with mealtimes is that have they noticed the acoustics in this dining hall are horribly echoey, it's noisy as fuck and the radio station keeps drifting ever so slightly off frequency - I can't explain how anyone else fully processes the world.

I get really fucking annoyed with the self-appointed tone policers who have taken over huge swathes of the autistic community. I get fucked off when they pile onto parents who are just trying to understand how to help their child and not to try to change them or "un-autistic" them... but how to navigate something that is obviously causing distress but needs to go ahead. I get so incredibly fucked off when a useful discussion gets hijacked into 8324234 pages of respecting pronouns, or when anyone who dares suggest that people with autism suffer varying degrees of impairment/impact/superhero enhancement* from the condition... people DO. It's also incredibly hard (and not very beneficial I find) to try to unpick what is an LD and what is ASD in many cases - and unless it's going to achieve some insight and gain in daily life for someone... it's not really something to try to do - we focus very much on functionality and what someone can actually do/do with support.

*I did actually get asked what my superpower was the other week - I replied very professionally and resisted the temptation to reply that I'd requested the ability to fly along with my ADOS report.

@ForTheLoveOfSleep DD1 & DD2 both find periods quite distressing. DD1 can't cope with them at all - I used to have to put her pads in her pants or remind her to change her modibodis, etc. They both use the combined pill and run the packs together until they have a breakthrough bleed every 4-5 months. Then they have a short period, and we start again. We time their periods for a school holiday, so that we can manage it more easily.

@CoffeeWithCheese hear hear. I'm not supposed to say 'my disabled/autistic son' according to some because I mustn't define him by his disability. Even though his autism is a core aspect of him as a person.

Thank you to the poster who answered my earlier question.

I’m hesitating to post any further as I definitely don’t want to derail or minimise the OP’s or others’ experiences.

I think what I’m struggling with is the assumption that autistic children without learning difficulties have lower support needs. There’s an assumption here that these children, like my child, don’t have explosive, uncontrollable, violent meltdowns, that they can attend school, make friendships, verbalise their needs, that their parents can leave the house, that they can attend holiday clubs and childcare settings, that they are continent…. None of that is the case for my child. Even though they are academically able.

There are no support resources here for us either.

Thanks for the explanation, it does make sense.

@ChildminderMum that does sound a good descriptor. I was going to say they use a Ras score for Short Breaks/Social Care, not specifically for autism but for levels of support.

To try to answer the query about it all being autism, I think it's to do with similar traits. So the "triad of impairments" eg difficulties with imaginative play/social imagination, social interaction, social communication measured in diagnosis. Also difficulties with executive function, central cohesiveness (seeing the bigger picture) and theory of mind. So, I imagine you can have these without a learning disability.

I've said before though, that I'm glad my son is not 'high functioning' because I would worry about him trying to navigate the world much more than I do knowing he needs round the clock supervision.

It makes me sad to hear some people’s experience that verbal autistic people don’t want to be associated with the non verbal autistic people with learning disabilities.

I also don’t know anyone with an autism diagnosis who describes it as a superpower. I don’t see being autistic as a negative thing, but I think of the ‘superpower’ narrative as an annoying misconception amongst non autistic people.

The difficulty with functioning labels for me is that functioning fluctuates so much friending on levels of sensory overload, speed of processing etc.

I may come across as being able to advocate for myself here but at other times I will be non verbal and barely able to respond. At those times I am in no way able to interact or advocate for myself.

Also people can function really well in one area and not in another.

This is why I feel that my son's Severe Learning Disabilities diagnosis is more useful than his ASD diagnosis. He was diagnosed with severe ASD aged 2, and I later asked for the SLD diagnosis (maybe age 6).

He is 15 now with extreme challenging behaviour and complex needs. Our family is controlled by his needs, and my youngest child is terrified of him. He gets a very good respite package, but it is still not enough. He has just had funding approved for a residential setting as I know I cannot keep up this pace much longer and he needs specialist care and 2:1 support.

What about the children/adults who cannot function is any area?

My child is non verbal and unable to advocate for herself ever. She is Doesn't have days when she can and days when she cannot. That is a clear difference is it not?

If anybody's meltdown prone child became calmer/easier to manage during adolescence, I'd love to hear about it ;) my boy has improved in so many ways since he was little. I'd love for that to continue 😄

It can be quite complicated. DD1 is 17. She had 1:1 in preschool, then special school until 16, now college in a class with a 5:9 ratio. She was diagnosed as having 'Moderate learning disability' when she was young, and got her ASD diagnosis at 15. She didn't seem to need one until then, because the MLD diagnosis overarched it. But the trouble is that she doesn't present as MLD is many of her behaviours.

She can use quite complex words (such as 'iridescent') but has a severe receptive and expressive language disorder, so can only understand at sentence level - when people try to talk in 'paragraphs' she is completely flummoxed. She talks in the third person, especially when stressed. She has a very limited sense of danger. She is impulsive and can't forsee consequences of her actions. She can't cope with being in a room with her peers, so has been removed from her course because she isn't making enough progress. She spends most of the day in the 'quiet room'. She needs assistance and prompting with personal care. She can be challenging in her behaviour and staff find it hard to manage her.

The trouble is, her superficial verbal ability means that people think she is able. They always assume she is able, then they realise that she's not. Then we have to go through the rigmarole of proving it. She's having a full cognitive profile done next week, so hopefully we will have evidence of her abilities.

It's the one thing I've struggled with since my daughter diagnosis at 2 she is now 6, she has diagnosis of non verbal, autistic and significant learning disability. If she continues as she is she will not be independent when older. I have to do everything for her including nappies.
Me and my friend were talking she has child with genetic disorder who is in wheel chair. She really struggles with physically moving him around. Life is difficult for her. She doesn't have anyone commenting on her struggle. And life is "allowed" to be difficult. Autism is such a spectrum and their are clearly children who needs are less. But to say u have child with severe autism or autistic is somehow seen negatively. I've been told by people that I shouldn't be voice for my non verbal child and they are more of voice because they have been diagnosed. Which was ridiculous comment. I honestly wish she had a different disorder if she had to have one , one that it felt acceptable to say life crap at times and that's ok. And the fact people who do say its wrong to say severe and who are writing a post on here to tell parents of severely autistic children quite ironic .

Oh yes, definitely. It is a difference. Is that because she has a learning disability though, rather than because her autism is different?

Functioning and severity are 2 different things. While usually it correlates there are autistic people who are severe - high functioning or mild -low functioning