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

Oh i love this. My son, who generally doesn't 'get' affection, will sometimes smack his mouth on my cheek 🤣 ill take what I can get!

Thanks - solidarity to you too! Hair pulling is the worst!

I had this as a trainee teacher during a lesson observation, except it was legs. It creeped me out so much but he was quiet so I ploughed on 😂

Sorry for all of you going through the awful sleep issues our kids face, as you will all be aware melatonin etc becomes less effective over time.

With my son now,we actually dont bother as sometimes despite being on the highest dose hes bouncing off the walls all night.last night was the usual at our home,which goes like this
Two hour plus struggle to get my son down which starts with trying to get him upstairs to his room,this in itself is a mammothly physical task which leaves me a sweaty achey mess. Once in his room i lock the door(yes this has been approved)then i sit outside until i hear him fall asleep, usually he kicks the door in for an hour or so.he will sleep for approx 2/3hours and then hes up vocally stimming and kicking door again until i let him out then thats him awake running around non stop climbing on everything and making a hell of a mess,destroying our home while in vain i try to stop him.he may go back to bed at 6 ish for an hour or two then its waking up time for school and repeat. I try to sleep for a couple of hours after he leaves and at weekends just dont.i am unable to drive as i crashed my car through exhaustion,thankfully other than me noone was hurt.

I don't even know what to say. I get a bit trapped thinking I'm in the most extreme situation imaginable and it's quite humbling to read accounts like this.

Have your son's care team considered antipsychotics to help with his behaviours? Obviously there's a drive to reduce these kinds of meds, but sometimes it improves quality of life for everyone involved.

OP that just sounds intolerable.

I just want to acknowledge your post - but don’t have anything useful to say.

@That80sgirl

Don't know whether it would work for you but we found that a very much lower dose of melatonin works better for us. I had read something somewhere (not helpful sorry) explaining why this could be the case. We give our dc under 1ml and it seems to mostly do the job (of getting him to sleep at least).
I think we were initially prescribed 3ml and then upped to 5 or 6 ml as it wasn’t working well but these larger doses seemed to have an unpleasant effect.
Might be worth a try?

@AutismNameChange i too get trapped thinking we are living the worst ever life that has no end of suffering in sight and that no one gets it or could begin to get it.I felt like it was only my family living like this, but deep down also knew it wasnt and with this thread sought this community of almost hidden families .im truly so grateful to everyone who has shared their difficulties about life with severely autistic family members,its made me feel less alone,less helpless.
I have asked for other medications but his pediatrician hasnt been exactly supportive or forthcoming

@boobybum thank you,ill try anything for any sort of peace,tonight ill try 1mg.

I've been diagnosed with cancer, my first meeting with my oncologist is tomorrow.

I don't know wtf I'm going to do if the side effects of chemo hit me hard and I have to deal with violent meltdowns/lack of cooperation with bum changes/going in Special Needs buggy etc.

I will also have to recover from surgery on my cancerous breast, which will leave me unable to use my arm much. He loves being picked up and spun, and I also need to be able to run after him and grab him if he takes off out and about.

@LuvSmallDogs I’m sorry to read this. I’ve been where you are and got through chemo radio and surgery. Pm me if you’d like if you think it would help 💐

@LuvSmallDogs honestly that sounds so awful, so bloody unfair, i hope your meeting has gone well,i hope the bloody cancer goes as quickly as it has manifested ,you are in this strangers thoughts.xx

Interested in hearing from parents who's children have gone through special needs primary and high schools, what happens next?do the schools direct you or are you left to fight battle for provisions based on the generosity or not of local authorities?im so scared we are going to be left without anything and ill be tackling a 6ft adult with no understanding.

DD1 wouldn't be classed as severely autistic, in that she's verbal and continent, etc., but she has been in special school since age 4. She's now in a special department of a college, in a class of 9 students and 5 staff, although in reality she often requires 1:1 support through the day.

Our biggest ally has been our learning disability nurse. She advocates for DD1. We have regular meetings between the LD nurse, tutor, and me, so we can discuss strategies and progress for DD1. The LD nurse also comes to DD1's psychiatry appointments.

Social services have just accepted her as a Child in Need again (we had support when she was younger but dropped it when she was about 8) and we're waiting for funding panel. They think she might be offered 4 hours per week of direct payments.

My son is in year 8 in a special needs high school ,he's been to.special.schools since. Reception ,my understanding is he will be staying where he is until he is 19 the school.have a "sixth form" ( note it's nothing like a sixth form in mainstream he will not be undertaken any formal.exams) after " sixth form" there's is a specialist college he can attend until he's 25 ,not sure what happens after that.

Hi. Your son is entitled to education provision up to age 25. My daughter was at special/autism secondary til age 19. We did not get a place at the college I applied for, and the LA found us a place in another borough, which we would not have applied for, but are happy with. Your child has a right to a place in an educational setting up to age 25. School & LA will help you with finding the right setting to apply for. SENDIASS will help if needed, also IPSEA if you feel your child’s needs are not being accommodated. Appropriate Charities can also advise.

Now my daughter is an adult I have also found referral to Adult LD Menatl Health Team really helpful. This was through GP.

The lack of help and services for families affected by severe autism is horrifying - even since my son was diagnosed 16 years ago, more and more services have either closed or re focussed their efforts on the the high functioning. It's a toxic mix of ruthless cost cutting and misguided idealism - that everyone can just become high functioning by wishful thinking

Late to the party but I wanted to say how much I agree with OP. Family member has mild social difficulties and there was a rush to diagnos them with autism. I feel this totally detracts fron those with real needs.

Getting real help after leaving school is extremely difficult but not impossible. You need to start now being very blunt with Social Work about your expectations - full supported living in an appropriate setting. They will expect you to keep him at home with a small budget to pay for carers and services - most of which will not accept the severely autistic or will only offer very limited support for very limited hours. We are almost there, my son has a supported living place to go to but held up by guess what - the recruitment crisis ! They will try to brush you off when you ask for real help but ignore them and keep pushing on with your own agenda - build support with other professionals and get them to advocate for your son's needs.

They are still ‘real needs’ even if less severe. And that is not what this thread is about.

What age is that? My son is 18 soon. He’s still at college but I worry about what happens next for him.

DD1 is 17¼. We've been told she'll move over from CAMHS to the adult LD team at 18. Social services have said that the Independent Futures team bridges the child/adult transition and start to get involved at 17½. Apparently, the level of support might go up as an adult because things that are deemed to be 'parenting' (such as personal care) until 18 become 'care' after 18.

Thanks, I’ll speak to college tomorrow. It’s all very confusing!

@That80sgirl Please can I ask how early you knew that your child was severely affected. I feel like I know at 4 months- no babbling, no eye contact, hates being touched, doesn’t calm down when cuddled, no hunger cues, bad sleeping, very few social smiles, no preference for caregivers, poor gross motor skills, hates holding toys etc etc- every red flag you can think of, he has. I’m finding it almost impossible to do anything as he is constantly upset and only wants to be carried facing away from us. Any advice you have would be appreciated