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

This is the easiest YANBU I have ever voted on. I assume those that voted YABU are the purse strings that decide the social care budget???

My 12 year old DD is what I would call severe. Non-verbal, doubly incontinent, violent and doesn't sleep. No social skills whatsoever, no friends, no desire to have friends, doesn't know what a friend is. Can't read or write. Hypermobile, ataxic. Needs help with absolutely everything from clothing, personal care, eating, going anywhere. Functions at around 2 years old without being able to talk. Her care is a full time job.

Her siblings are a little older and their lives couldn't be more different than what they should have been. Constantly being pinched and hair pulled. No holidays, exhausted parents. A sibling whose needs seem to trump everyone else's at every turn. I am lucky to have a great (exhausted) husband but have no other support locally. SS offered an hour a week at home respite and we've have various bits of paper of advice and Web links thrown at us over the years and dd has laughably had her own forms to fill in. The best she can do is scribble on her magnetic board. She certainly has no awareness that she has a disability or what a disability even is let alone being able to advocate for herself on an Internet forum or otherwise. Ever.

Hopes and dreams have all but gone. I naively thought when she was younger there'd be support for families like us. There isn't. We will just keep going until we can't anymore and she has to be taken away from us and put into God knows what care. It's an horrific thought not knowing where she'll end up. Her siblings will no doubt bear this guilt too. It's shit. So so shit.

@Leahkia nothing useful to even say, but I'm so sorry for your situation and how badly let down you are being in terms of support.

Those are all things that ‘high functioning’ autistic people also do, which I guess is why I’m having difficulty understanding why the autism is different and not just the learning disability.

But I agree that the op and others should be allowed a thread to express themselves and their experience, and so I’m keeping a low profile. However, this thread has really upset me. Not the op, but some others.

I guess one thing this thread really shows is that in general there is poor understanding of autism across all of society, including autistic people themselves. It’s just such a shame that fighting amongst ourselves detracts from addressing that. I wish there could be solidarity and understanding of all our different but equally valid experiences.

Yanbu. My son is severely autistic. He’s an adult now, in his mid twenties. We found a lovely placement for him a while ago and it’s been life changing for him and the rest of our family.

It’s really hard. Life is completely different to other families and support is minimal. No going out, no holidays etc. I would have been happy to have him at home but with no services or respite it became impossible once he had left education. I need to work and he needs to occupied. It’s frustrating though as I’d care for him at home for a fraction of what his placement costs, due to high care needs it’s in excess of £5k per week. With less than half id ge able to give up work, buy a bigger property and employ my own staff 🤷. The system is broken.

He’s happy where he is, he has a very full daily schedule and has 2:1 support at all times.

So high functioning autistic people smear poo , physically attack people resulting in broken bones because a demand cannot be met straight away ? Refuse to wear all clothing so are naked 24/7/ destroy anything in the immediate environment because it needs to be bare ?
It is different people with just LD tend to be less rigid over the environment/food and routines . I work professionally in this field. It isn't just LD that causes the behaviour.

Hope you don't mind my asking as we're a few years behind you.. Do you get any support financially for your son's placement or do you have to fund that yourself? Thank you

@Leahkia I have no words other than that I am so very sorry for your struggles and your dds. I can only hope that there will be more help available to you and your family in the near future.

I hope after reading this some of the other posters can now see the need for distinguishing wether autism it is mild, moderate or severe.

You tell me I don't understand autism when I have professional qualifications numerous years of experience and myself have ASD and it's mild. It's a spectrum disorder , some people are very severely affected and will sadly never live a life outside of hospital or care facilities. Please stop hijacking other people's experiences which is sadly becoming a huge thing in the autism community. The most vulnerable people are being forgotten about. I'm sure you do have your difficulties but I'm guessing you aren't non verbal and detained under section 3 of the MH act ?

They can, of course they can. Of course they don’t all do all those things but not all ‘low functioning’ autistic people do all of the same things either?

I’m not saying it’s ‘just’ LD causing the behaviour. Sorry if it’s coming across that way. I’m saying that LD is possibly interacting with the autism in a way that means the impact is different? Just as adhd, ocd, etc will affect the way autism manifests itself.

You’re making an assumption that I have no experience of people with autism and LD - I do. Your experience is likely more extensive.

Not currently detained under section, no, but I have been.

I’m not non verbal most of the time, obviously. Nor am I pretending to be.

I’m telling you that you clearly have things to learn, as do I. It’s dangerous to assume that we don’t. If you think ‘spectrum disorder’ means a linear spectrum from severe to mild, you clearly do lack understanding.

Yes, people are being failed. Families like the OP’s deserve all the support in the world and I don’t think I’ve ever suggested otherwise. I’m not sure where you think all this support is for ‘high functioning’ autistic people.

Nowhere have I said that I experience the same as the OP’s child, or that she is being unreasonable. She isn’t. You don’t have a right to make sweeping statements about me or my children either.

40 percent of people with Autism also have learning Disability. That indicates that yes the conditions have a connection. Well yes frustration at being unable to understand and articulate your needs would be highly distressing 40 percent of the most vulnerable people are being forgotten about and censored.

Wouldn’t it be wonderful if everyone who worked in the field had a full understanding of autism. But we all know that isn’t the case.

Sorry, I bit. It’s hard not to when others are on a wind up mission. I really am going to step away now and I wish all posters posting derogatory messages about anyone whose lives they know nothing about would do the same.

No it’s funded 100% by NHS continuing healthcare. If he loses his nhs funding, which is a possibility as it’s reviewed yearly, then it will be funded by SS. It was a bit of a fight though I won’t lie. They came up with several other placements which were of course much cheaper.

Is there any chance of a truce from FeeFee and Fatgirlswim or shall their posts continue to dominate the thread and take it off course?

I think this is why support needs should be the focus rather than the functioning labels which are pointless.

ds (13) would be classed as high functioning. He can’t eat enough to sustain him so is primarily tube fed. He has massive sensory issues. He can’t clean himself or do more than very basic self care. He is verbal but can’t express himself and will go mute due to anxiety. He can’t be left alone and has full time 1-1 in school. Etc etc.

he is a fantastic young man but realistically he will never be able to live independently and will always need high levels of support.

it’s not a race to the bottom and everyone should be supported but we need a system which properly looks at what support is actually Needed and doesn’t make assumptions based on a label. That doesn’t help anyone as for those who are labeled as “low functioning” if can often lead to assumptions being made about what they can’t do so them not being supported/pushed to be the best version of themselves. At the other end people assume that “high functioning” individuals are just fine and a bit quirky so again they don’t offer the support needed or think it’s exaggerated because they “don’t look autistic”

I'm not going to carry this on but I myself have ASD and I would say I'm not severely affected compared to others with the condition. Anyway OP I support you and I sympathise with what you say.

That’s fine. I’m not telling you that your perception of yourself is wrong, so please don’t tell others that either. Nor am I disbelieving parents who know their child best who say it is the autism and not the LD that is severely impacting their child. I don’t get to say that or speak for them and i have never said that I know someone’s life better than they do. Just please afford me and others the same respect.

I am struggling to understand why it isn’t the LD that is making a difference. I actually want to understand that. It’s just a pity that aggressive posters get in the way of genuine parents of children with LD and autism who may be able to increase my understanding.

I’m no fan of the autism community either. I think people can be very exclusionary and it’s detrimental to all.

Maybe it would be good if parents of LD and autism children had a support thread for venting and mutual understanding where the rest of us just don’t butt in?

I also support and sympathise, OP and all others who have answered my genuine questions without being derogatory or picking a fight.

@Rainbowdrops2021
@FrostyFifi
& @Pearsandclocks

Thank you x

I hear you op loud and clear. My 21 year old daughter needs constant care and supervision. She has minimal speech, no reliable sense of danger and has a wide array of extremely challenging behaviour which means that we are often prisoners in our own home.
My daughters disability has almost destroyed our family, her brothers have been impacted massively. Even when I was having chemotherapy we didn’t receive help. Apart from my heroic sister. And no one wants to listen or help.
Amongst professionals there’s been a lot of talk but they just seem to have meetings about meetings nothing concrete is offered
Too much talk which results in zero meaningful support for my dd or her family
I’m sorry to read so many others in similar positions but I’m not surprised

YANBU, my dd is significantly disabled by her autism.

Anyone that has worked or been good friends enough with us to provide their help, knows exactly how difficult it is. In a way I feel most to society do not see.

I completely agree, and I hope I didnt come across as saying that because you work you aren’t struggling, I just was trying to convey that profiles can be crazily spiky and so a person can be relatively functional in some
areas but completely dysfunctional in others.

Autism hours and screenings are a great idea and I fully support them, but yes as you say they don’t work for everyone. My son thrives in loud chaotic places, he’s a sensory seeker and the louder the better for him. So quiet, dim lights aren’t for him. They are great for me though 😂

I am an autistic woman with two autistic children.

1 barely sleeps needs 2-1 when out with the house and 1-1 in it. They struggle with aggressive behaviours, run away if you don't have a hold of their hand, help to go to the bathroom. They are more like a 1 year old than 12 year old. They will need lifetime care.
The sibling who I was identical to as a child and the reason we found out I was can go out to clubs, school etc and will be able to work have a family if they so wish etc they are not on par at all.

In any medical diagnosis there are levels why has autism got to be different.

I have my own coping mechanisms for mine to function in this world yes I struggle with some things like my anxiety about new places but it's very different to the struggles my 12 year old has.

It's absolutely horrible seeing any child/adult struggling. Parents who have children with much higher needs than others need be allowed to chat about it or are we meant to hide away as for decades children like ours were hidden away from society and look what good that did, none!

I am struggling to understand why it isn’t the LD that is making a difference

Having a learning disability affects learning overall and it ranges from mild to severe. Most Autistic's have a mild disability than profound. So some children/adults with a learning disability may take a while to learn new concepts, some may present as immature, difficulties acquiring/using language (but not all cases as some children may have apraxia of speech or a language disorder which is different than having a learning disability) and some have difficulties with life skills in general. Most people with learning difficulties (without ASD) are very sociable but vulnerable - but not always.

Children with ASD and LD have difficulties or take a long time acquiring and learning new skills. This does not affect anxiety (which is commonly associated with Autism) self-injuries behaviour (associated with autism), having rules and routines that need to adhered to (associated with autism), having sensory differences or difficulties (associated with autism), emotional regulation/social understanding and poor pragmatic skills (associated with Autism) and executive functioning skills (to ensure honest, affects all different needs- inc ADHD, Dyslexia, Dyspraxia). But my point still stands, learning difficulties affect learning/acquiring new skills solely. Autism is the prime culprit of the other areas of needs I mentioned above- not the learning difficulties.

Another point I should make that it is very difficult to separate the two, they are all intertwined together.

Well your article states over that over time, it’s become used to define how a person functions, generally.
Ive not come across a single professional who uses Hf to describe an autistic person because of their IQ.