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

They’re already involved. Police have also attended several times. It won’t be long before he’s taken away in handcuffs which would be heartbreaking for everyone. It’s not his fault, he’s basically throwing a tantrum but he’s a 6’2” 15 stone toddler!

They’re is a medication called Zypraxa that can be placed under the tongue when signs of an impending meltdown are seen and they can also be used during the actual meltdown. They calm the person down anger wise within about 10-15 minutes. Can your sister ask them to be prescribed.

My son is also huge. On a good day he’s a 6 foot 4 inch version of tigger but when he’s finding the day very difficult despite our efforts to keep him comfortable he takes on the characteristics of King Kong. ❤️

This is so disingenuous.

I have never heard or seen anybody get pilloried for describing any condition as severe or mild apart from autism.

I think he was taking that one but it stopped being effective. She now has to give him diazepam which is easier said than done when he’s head butting her or trying to strangle her.

I'm so sorry they are going through this. Yes this tends to happen when the person becomes bigger. It's so sad. I hope your family have got out of hours support ? If the worst comes to the worst and he needs to be admitted I have worked in ATUs , they are extremely well staffed nowadays and the care is very good.

And nobody says parkinsons or MS is a superpower. People recognise it is a negative thing to have an illness like those.

EOTAS is bespoke to what will work for the individual. For some it looks like EHE but the LA fund it and retain responsibility.

I understand if you choose not to pursue it, but I thought I would mention it as unless parents are very rich EOTAS can provide far more than EHE can. That’s not a criticism of those who EHE but a statement of what is possible with EOTAS. DS1’s package costs well in excess of £100k pa, there’s no way we could afford that.

He has caters who take him out a couple of times a week and he goes into overnight respite care a couple of times a month so my sister does get a bit of a break but it’s nowhere near enough.

Have they looked at whether DN qualifies for CHC funding?

@Hendric so if you knew someone had MS but they worked full time would you comfortably say "oh it's only mild then? "

I personally wouldn't decide for myself any other persons condition was mild or severe it really isn't my or anyone else's place to.

It might be he has to have regular doses in the morning and evening as opposed to just PRN. I find promethazine also works well as first line. The consultant psychiatrist may need to rejig the medication, the most important thing is administering the PRN before crisis point is reached. So de escalation techniques , proactive strategies then if not working try to administer before an episode of violence . Ask the pharmacist /psychiatrist/nursing team if suitable to place the medication in yoghurt or chocolate bar. I've found people even when very distressed will take an item of food they like and eat it.

OutofEverything

Parkinson's and MS are degenerative conditions inevitably leading to death, of course there are no positives to them.

Some autistic people (me included) do find positive sides to our autism. This isn't to invalidate the experiences of those caring for children with severe autism, but you can't compare it to a terminal illness.

@OutofEverything I'm personally not a fan of the superpower ideology. I assume it's coming from a good place but I don't find it helpful.

As far as the LA are concerned there are suitable placements for him. So they won't consider EOTAS.

There aren't (for various reasons) but as far as they are concerned, there is.

I do appreciate I could fight them on it but I feel it would be an awful lot of energy for not much joy.

I did apply for a personal budget but that was rejected. The reasons for the rejection just underlined for me how little they understand.

He's a completely different boy at home and much, much calmer.

I would not say it, but I would think they were currently much less badly affected than someone who needed 24 hour care.
The difference with MS is it is often progressive.

He definitely takes meds every day in his orange juice although to be fair I don’t know what they all are. She can sometimes distract him from a meltdown but the window of opportunity seems to be getting smaller and the things that trigger him are getting greater!

What? What are you talking about?

No, that rude. Obviously. It's also entirely irrelevant. I am talking about people describing their own experiences or the experiences of loved ones.

It's not interesting, it's common sense. Autism doesn't get any worse or better. It can get worse in terms of what is complicates but not at the scale of the conditions you've listed and not in that way. Both of the conditions you quoted are conditions that deteriorate and are developed over time, and there are things you can do to help you avoid developing them. Lifestyle choices can impact likelihood of getting them in old age. No one is born with either. That's just not the case with ASD.
A much better example would be why is the cerebral palsy diagnosis, a condition children are born with, given very clear levels of severity and not ASD. The level of severity with CP directly impacts what support you receive and what professionals can be prepared to see when they are getting ready for an appointment with you but only have your paperwork in front of them.

@crackofdoom I agree they are not comparable. But the analogy was suggested by someone who is not happy to accept that autism can be mild, moderate or severe.

I agree. There are people with cerebral palsy where the impact is relatively mild. They can not go hill walking or do very physically active sports, but day to day activities are fine. And others who need help to manage daily living tasks.

There doesn't seem to be moderate Autism. We're either high functioning or low functioning. That means some of us are lumped in with people who have totally different needs

@crackofdoom good point. I just think any situation where people are deciding who's suffering and who isn't based on a perception isn't a helpful thing. It's not to say the op's and her child's experience isn't valid. And I really feel for them I just don't see how it's helpful to have a separation. Where is the line drawn? Who decides? Is my child suffering less than the op's child because he recently toilet trained? But last year he wasn't toilet trained? Or because he has the ability to speak? (Even tho he can use words he can not hold conversation inthe traditional sense)

Adults with functional and behavioural challenges are desperately underestimated in the amount of support they need by care services. Their care is massively underfunded and I really don't know how families cope.

It's disgraceful that respite is being cut. Absolutely awful!

I know that not all people with severe autism are violent, but the level of sheer hard work involved in looking after someone at this level is just isn't recognised. A friend of mine started work at a newly-built establishment funded by a local charity and after being threatened and assaulted several times at work, she felt she had no option but to quit. She couldn't risk getting injured.

A few years ago it was usual to use medication to help deal with extremely challenging behaviour, but nowadays that's very much frowned upon. I'm not advocating drugging people up routinely, but large violent adults who are agitated and dangerous to those around them can't be handled safely by a couple of carers.

The physical and mental toll on families must be unbearable.

The Diazapam can cause a the aggression or worsen it. Was your sister being prescribed the original Zypraxa or had it been changed to one of the ones that have been copied from the original. That can cause the drugs to become less effective. Also, is your DN on any daily medication to help with his frustration/aggression. Some of our loved ones are given anti-epileptics to help with it.

Im not in the UK but in the past I’ve been helped by this organization. You can just phone them.

www.challengingbehaviour.org.uk/

Im also a great believer in the Low Arousal Approach to ASD and it forms the mainstay of how we look after my boy. You can google it but Professor Andy Mc Donnell is the world expert on it and I’d read what he says about it first and foremost. I think he does courses at Studio 3. And when he wrote his first book on the subject he sent me a copy in PDF even before it was published such was the crisis my son was going through.

And just to say I understand your family situation completely. ❤️

@Hendric I agree it's rude. Yet people genuinely think it's ok to say to me "your not that autistic " or say things like "everyone is autistic these days" which dismisses the experience/struggles autistic people have.