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

To be honest I would threaten SS saying you cannot support your child's needs anymore. You are going to have to relinquish drop off at a&e as you cannot cope. (even if you don't mean it) SS only spring into action in crisis. I have worked in services for a number of years parents only tend to get help quickly when there's risk of admission under the MH act or parents are saying they will relinquish.

I had to do it to put together the team of 5 who care for my son along with family members. We’re not in the UK and I searched locally as well as internationally. It’s so difficult I have a really good bonus built into the contracts to ensure I get 6 months notice as it takes that long to sort it all out. Obviously if an emergency cropped up a person would be able to leave but so far people have liked being with us and if they’ve left they’ve done their 6 months notice. It’s nerve wracking because to even be one soul down is extremely difficult.

@autienotnaughty The fact you have the capacity to argue on an internet forum and advocate for yourself and your level of need, just proves that your autism is nothing like what the OP is describing her child. It's night and day. It's almost a different diagnosis completely.

I know ASD is not curable and it is not cancer, I am just using this analogy to illustrate the point. When someone says they have cancer, but it just so happens to be stage 2 and a type that's very easily treated, it doesn't mean they don't need support or help or treatment or even trauma from the experience. Lots of people rally around to help and are understanding. Their treatment may well cause problems throughout their life. However, it's a very different ball game to be diagnosed with stage 4 cancer and the implications that has on family life and that persons.

It is not the pain Olympics, but it doesn't help for people like the OP to not have their struggles validated and overtaken by the ASD is a superpower bandwagon. Or even the 'there's no mild autism' bandwagon. Until you're having to change an adults nappies and trying to figure out how to calm down a large non verbal male, you won't understand the frustration.

My daughter's dyslexia is so severe her language is impaired, she's had to access SALT through ASD services so I have seen quite a lot of this and it's disheartening. The rage I feel inside when I meet a parent with a child who has dyslexia, and they tell me they just got 5/10 in their spelling test. That same child will have the same extra time in exams as my DD. They can speak, read, write, most will pass their exams without a problem. My DD is the very unlucky 0.1% of cases. The amount of times she's been told about her superpower makes me so pissed off. I'm not minimising the frustration for other dyslexics but my goodness let us have a rant somewhere. I know it's not like your situation and it's not even ASD, but feel for you op, I really, really do.

@Feefee00 I could not do that to my daughter. I realise that this is what the so called care system relies on.

Re finding the carers yourself. Like everything with a disabled / SEND child. Where is the choice? You crack on because there is no choice.

Yes the care system relies on the good will/ love of parents and families so they don't have to do anything. I'm not saying you would ever do that but the threat of it is the only thing that gets them going sometimes. It's terrible , many people with LD have no family involved at all , I've seen a few people with LD living in services since the age of 2/3 years old so people living with family are very down the priority list. It's wrong

Exactly. Where I live no support means just that ‘absolutely no state support’. Families are just left to get on with it as culturally that’s what a family does.

A School did open just a few months back that’s provided by the state but it’s the first autism specific school/Centre we have. I think my son will be in his 70’s before there’s anything like assisted living.

YANBU. We have this in the family. And apart from family support they are completely alone it feels like. The child (I'm being quite vague as I don't want to identify them or myself) involved is suffering hugely as well, with some kind of unknown additional condition which seems like doctors have washed their hands of, or put down to 'anxiety'. It's disgusting. No verbal, NT child would be allowed to be in the state this one is. No matter how much the parents fight for them, they get nowhere.
Their school helps, and obviously it gives the parents some respite, but tbh the child is out more than in because of their health issues. We have no idea what the future holds, but it is terrifying no matter how we look at it because although the child may make some progress they will never be capable of even supported living arrangements.

I'm pregnant with my first child and I'll be honest, I'm terrified they might be similarly affected. When I verbalise this people are shocked, and say but you will love them all the same. Absolutely, we love the child in our family. But I wouldn't wish it on any child, or any family. I wouldn't wish it on my worry enemy. It is nothing like the autism you see on TV or in books or in wonderful look how we support neurodiversity adverts.
Not to say they don't suffer in their own way, and have major life challenges. But severe autism is terrifying, horrifying and traumatic to those involved. We love them with every essence of our being but it makes it 10x worse then knowing you can do nothing g to alleviate their suffering.

I know several people with CP who run marathons.

That's not okay. You have to push this, they can offer a DP but should also offer to arrange the care.

Email your MP. The other poster who advised about threatening A and E is not wrong either.

Another example of stuff pushed on to parents.. when my daughter was referred to CAMHS the psychologist referred to OT. Great, I thought, that could be really helpful. It turned out that I was expected to go on a course to learn OT techniques, no actual OT would be working with us. I work part time and am a carer of a profoundly disabled person. How is that in any way helpful? Cost saving and box ticking.

Ha, my DD was referred to OT following her ASD diagnosis to help with sensory issues...I had a phone call and was sent links to some YouTube videos!

@Caviarandgelatine It is laughable!

@Hendric I guess you have some knowledge of this. I have requested help from SS about accessing appropriate care for child paid for by DP, but have been stonewalled. What should I say to get their attention? thanks if you can advise

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

I think different LAs do provide these. However these services still have to recruit from the same pool of workers as care agencies and schools do.

The problem is lack of recognition by successive governments of the needs of the client group and the need for suitably trained and paid staff who are hugely undervalued.

@DesertRose64 thank you so much-I'll pass it all on to my sister

Our local area can’t offer sensory OT at all on the nhs. It’s not commissioned. Our amazing Ot left to go to a trust where she could use her skills - thankfully she managed to indirectly help me a lot in getting some ideas.

we are at annual review point now and I am pushing for sensory Ot to be included because Ds needs it so it will push the hands of the LA to provide as like most I can’t afford to pay privately for it

I work with severely autistic young people and I actually found descriptions in terms of functioning to be helpful. You can't just say "autistic" and know immediately what you're going to be presented with. There have to be more descriptors. And honestly, both professionally and personally, I have found the ones stamping their feet and griping about "no such thing as high/low functioning, no such thing as severely autistic" are ones whose lives are affected by what I would class as mild autism. Of course, people like my sibling, who received a diagnosis late in life would snipe "it just means YOU experience my autism mildly." But to them I would love to say "the fact that you can even say that to me and have the cognitive ability to think that through and verbalise it with emphasis and anticipate a response is an example of the point I'm trying to make."

My sibling is obviously worried that they're going to get some sort of accommodation taken away if they acknowledge that their autism doesn't prevent them from functioning independently in society and at home. They look after their children. They do their housework. They have a job. They shop and cook and socialise. They have hobbies. The young adult I am supporting 1-1 this week cannot speak, cannot feed themselves properly, has absolutely no concept of danger, cannot keep their gaze in one place, is doubly incontinent, cannot read, cannot have a calm and meaningful interaction with another person, is very aggressive, humps furniture or people if they can grab them- and they will. Their only verbalisation is screaming. It always has been. They wouldn't know what a friend was or even want one. They don't appear to have ever enjoyed anything in their life.

Their dad scarpered at around age 6 and didn't stay in contact because he couldn't cope. Their mother is so burnt out and always looks like she's five seconds away from tears. But my parents were very surprised to find out my sibling was diagnosed with autism as they hadn't noticed anything when raising them and they are their fifth child. 💁🏼‍♀️

I have a severely autistic child to the point not even allowed a school because their needs are too complex. I can't even say they are severe without someone, who has no business saying anything, telling me labels are bad 🙄

Yet those are the same people who don't understand why my child is like they are because their distant relative is mildly autistic and so presents completely different "but they're both autistic" 🤦

My son is 10 and is becoming so much more capable of communication despite being non verbal and having limited understanding. He's also toilet trained although occasionally pees in the sink.

He can be extremely challenging though and can anyone relate when I say it's nigh on impossible to have a lovely looking home!?

@AllOfThemWitches I know what you mean about impact on your home/life. Over the years we have adapted our home to some extent to accommodate our child. Also she is very particular about things being in their right place, so being tidy is not an issue, but being very controlling is. Every autistic person is different, and what we all need is more understanding of our individual issues. And more help!

It is so difficult.

I have 3 dc on the spectrum. Eldest has severe autism, with learning disabilities. We are ‘lucky’ though, as she is verbal, sleeps ok, and now having come out the other side of puberty, has relatively manageable behaviours. Younger 2 have mild/high functioning ASD (whatever the preferred term is now - dd2 was actually dc’s with Asperger’s, so no idea what she has now! Ds has, according to his dx ‘mild to moderate ASD’, which is clear as mud, quite frankly.)

There are many traits they all share, but the gap between them is actually a vast, yawning chasm.

dd1 is just about to finish school. No idea about college placement, but it’s not looking likely. We do have a good proactive social worker currently, and things are moving, but slowly.

whilst the younger 2 dont need anything like the support that dd1 needs, they do still have significant needs, but the discussion is always about dd1 (as her needs are more immediate and obvious) - there’s never enough time/energy left to make sure they are totally supported, and seemingly no professionals cares enough to ensure their needs are also included. If ever anything is organised for dd1, the kit is seen as taking enough pressure off and the younger 2 don’t need anything. Whilst I am grateful for anything we get for dd1, meeting her needs does not miraculously mean that the younger 2’s needs are also met - it does (very) occasionally mean that we get an afternoon without having to consider her first, but that doesn’t come close to addressing any issues they may have.

If your child is under 18 I can't help in terms of your specific rights. I learned at uni but have never practiced in CSC. That said emailing your MP and/or local councillor will help.

Thank you. My daughter is an adult. She has input from Adult with LD MH team, goes to college with OT SALT input as per EHCP, has Direct Payments. It just seems no joined up thinking between all agencies involved. Also, it is agreed that something is needed, but there seems to be no mechanism for that to be provid3d, or no money. I am an articulate person, able to ask for what we need, but there is such a lack of provision. I will try my local councillor. Again.

I feel that as long as a family is coping, barely, that is an excuse for no real provision. Total breakdown should not be the trigger for support.