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

You don't have any kind of autism, mild or not. You have some autistic traits which is not the same as meeting the diagnostic criteria for ASD.

This was part of tge diagnostic procedure going back 30 years when my son was diagnosed. I’ve no idea if it still is because I’m not really interested in the academics of it all. My interest in autism is my son.

Yrnbu - my sister is severely autistic- as children it was extremely difficult- she rarely slept more than a couple of hours. Life was completely dominated by her and her routines. Was a weird way to grow up looking back. It got easier- now as an adult she lives in a supported living care home happily.

Has anybody here been assessed or their child assessed as level 1, 2 or 3?

I'm in American groups where people use these levels a lot and it seems like if they were used here it would make understanding the extent of people's struggles a lot easier.

theplaceforchildrenwithautism.com/diagnosing-autism/the-three-levels-of-autism

If you can read and write and post on Mumsnet you have no idea what it’s like to be severely autistic. Yes you may face difficulties and challenges and I in no way want to take away from your struggles but it’s not comparable!!! Honestly if I have to watch one more ad for some z list celeb and their struggles with late diagnosed autism I will explode. When I say my son has autism everyone seems to think he’s a mathematical genius not a boy who doesn’t have the ability to live unaided for the rest of his life. The more able are now the voice of autism, it’s not a sodding super power. It’s hard.

God.

Op and some of the other parents here need and deserve a space to talk about how utterly shit the boat they are in is.

High functioning, low functioning, moderate, aspie..... You KNOW what she's talking about though! How is it helpful to get all puffed up and arrogant with the how dare you attitude, as if OP is taking something away from you by suggesting their household is more dramatically affected by autism than the people on here typing that their own autism is very difficult thanks very much?

How many of your parents are like OPs son? How many of your parents are non verbal, doubly incontinent autistic people who are violent with little comprehension of the world around them? How many of your partners are? None. I already know it's none. How many of you with diagnoses of late autism have children and partners? How can you not see that a late autism diagnosis usually means everyone missed it, including the person being diagnosed! People like OPs son will not have been able to mask and blend. They won't have had a lifetime of participating with society, despite having some issues with doing so. They won't ever muddle along!

There's a difference and arguing that there's not and that's there's nothing helpful in categorising severity of autism is ignorant.

Changed name just for this - feel like it's identifying although I know how many of us are in this situation...

Two of my DC are autistic and I work in learning disability and autism services. I'm undecided about functioning or severity labels - as a NT person and a professional though, I don't use them.

DC 1 - What would have been called severe autism, learning disability, non verbal, doubly incontinent, extremely poor sleep, faeces smearing, biting, hitting, headbutting, hair pulling, eye gouging, absconding, complete destruction of property.

DC 2 - Not even sure how he would have been labelled back in the day, used to present very much like DC1. Can talk but still significant language and communication difficulties, uses toilet, seemingly bright but struggles to access any curriculum, 1:1 in special school, self harms, screams all day long, very very rigid.

On paper DC1 has higher needs in many respects but I worry much more about (and to be honest often find it harder to parent) DC2.

My son took part in a research project when younger and had a psychological assessment done. The report says he has “severe mental impairment” with an IQ of <50.

Agree and it’s hard because as parents we often don’t tell people , even the professionals exactly what goes on at home. Some of our closest friends know a lot but not all.

when we were going through tribunal i did a gdpr to the LA. There was an email between the social worker and psychiatrist and it basically said they felt I wasn’t being entirely truthful with the issues faced at home for fear of repercussions or making my son look bad. There were comments like “mum gives the impression of being very “chipper” whatever that means ! I read through 3000 documents and emails and there was alot of comments like that in reports.

I don’t think there are many parents that would let the mainstream media into their homes or lives so I guess they publish what they have.

Thanks OP - I have name changed for this. I am not a parent but a step parent to a teenager with developmental delay (still a toddler mentally) with ASD amongst their diagnoses. I find it’s really difficult now they’re older - activities they’re drawn to suited to v young children now aren’t suitable environments, because they also have challenging/aggressive behaviour and little awareness so they can’t be around small children and of course their size now they’re a teenager means they’re just too big (not that they realise that).

It’s really difficult with the other children (both maternal and parental) as they dominate the household and want the attention of all adults all the time. They also want everything all the time - nobody else can speak/play/eat if they’re not minded to allow it.

The aggression has only really presented in the last few years. I didn’t see this as our future.

Obviously I’m slightly removed in being a step parent but it still has a significant impact on our home and it’s getting harder and harder.

People don’t get it and I’ve lost count of the times people have told me they must be “really good at something” they need constant supervision and can’t perform any basic tasks of self care - like taking themselves to the toilet or making a drink.

My kids say the same. They were never able to have friends round either, no family days out etc. I feel so guilty about that but they’ve grown into very compassionate young people which makes me proud. None of my other children want children of their own though which I can understand.

I'm also in American groups and see these levels ,my son would be a level three,as he needs full 1:1,full time care at a'll times ,non verbal,with very limited understanding of the world around them,will never live independently etc,
I don't think levels are used in the UK though

I also echo the not feeling welcome at some SEN groups / showings and shouted down by some very vocal autism self-advocates that I obviously don't understand my children or haven't adapted their environment enough (anyone who has seen our house knows that's nonsense but the comments really hurt).

Bloody hell ! I have 30 plus years experience of dealing with my autistic children and my head hurts from trying to follow this debate.
The original idea was to provide a listening ear and solidarity to the op and others of us dealing with children with the very extremes of challenging behaviour ( in numerous areas ) caused by their condition not to engage in a debate worthy of the Lancet.

SO ....I would like to send positive vibes to all those dealing with this in their families with little or often no support and indeed understanding of what they are going through.
OP if you are still here I hear you and send a huge hug of support. You are not alone .

Only heard of the levels recently on here. My letter from the person who assessed me says ASC / Autism spectrum condition

I usually tell people my son has a severe learning disability because them they seem to understand better how he presents and what support he might need. He is 'very autistic' in his need for routine, repetative behaviour and having major sensory difficulties but if I say he has autism I think people expect something different and are less prepared to make adjustments etc.

He was diagnosed with ASC aged 3 thirteen years ago. No levels and everyone with autism got the asc diagnosis.

We get. 2 overnights a month at overnight respite which is 60 miles away.
We have no day to day support. We get direct payments which we cannot use because there is no one with the necessary experience and training.
There are now continuing health care assessments with health and social care supposed to be working together but are clearly not.
We are lucky that he goes to an asd specialist school 40 miles away.
It's a constant battle to get support. That causes the biggest stress of all.

I just wanted to say how heartily I agree with this.

I see the predicted and inevitable arguements about how autism is hard for everyone but in different ways has taken its dominating place on a thread intended to discuss having a child like mine. Hopefully you now all feel fulfilled and better having made your points,can this space now be used as intended?To all the parents parenting a child like mine,thank you thank you for sharing your lived experiences, its made this emotionally and physically battered mother feel less alone. Please use this thread to talk about your children, your day to day struggles, your wins,the bloody injustice of it all.

@That80sgirl
Amen to that !

@That80sgirl i just wanted to say, I’m sorry your threads been hijacked by a vocal minority. Totally proved your point, certain posters should be embarrassed.
I can’t even imagine what it’s like to walk in your shoes. Your son is very lucky to have you as a mum. I am in awe of you. Take care x

Sadly I don't think this is the place to.talk about children like ours it always descends into.arguments ,
I'm in a Facebook group for people with children with severe autism and learning disabilities,it's the only space I have found where people generally get it because we are all in the same boat .

Also OP I wanted to say you are not at all unreasonable- the system is completely broken. It is shocking but not surprising that there is no support for you and your family. You are absolutely right about the severe presentation of autism and the experience for parents. ‘Awesome autism’ and other such silly catchphrases are just offensive when the family in question are facing your struggles.