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 anyone with autistic kids not toilet trained, my daughter was 7 when finally out of nappies. Thanks to two very experienced, lovely TAs at her autism only special school.

@Rainbowsandbutterflies1990 I found that the most confusing and frustrating thing. Nobody could tell me what the future might look like for DD1. Even now at 17, nobody admits that she's never going to live independently until I raise it. She needs virtually 1:1 in college. She can't cope with a full-time timetable. She can't be left alone at home. She didn't even leave the bathroom when it filled with smoke because 'she had never been in that situation before, so she stayed exactly where she was!' She can't go on the LA transport because she can't cope with the other kids, so I have to drive 2 hours per day to take her and drop her off.

DD1 has just, at 17 years and 2 months, been accepted as being a 'Child in Need' by Social Services. The respite is being taken through panel at the moment. Ironically, by the time it's approved, they'll start wanting to transfer her over to Adult Services and it will all start again.

I have severe adult adhd and it makes me feel good to see such a discussion and consideration.
I've had well meaning friends to 'use it as my super power' but it's mainly not like that.
I have a university degree but people think because of that I can do better than I can at everyday tasks and such like. Insert: I clawed my way through and found it very difficult to produce enough work and organise myself, but I did it.
The vast majority of people don't understand that adhd, and autism also can be quite dichotomous and not linear.
It makes sense in most people's head that I can't possibly cross the road without looking (I understand why you shouldn't) but can't maintain a job.
However, I can somewhat why people might think this.
Thanks for the validation on this thread.

I expected u to ask that. Obviously her autism and learning disability is intertwined but her behaviour is definitely relating to her autism.
No I don't belive it is. She spends 95% of her time stimming mainly running up and down room. And flapping her hands.
Her autism is also causing her being non verbal. I wouldn't think that was her learning disability Obviously it would not help but she knows lots of words and says lots of words in relation to Instant echelalia and delayed echelalia Which is again autistic traits.

Another thing to add is she has severe sensory needs. I was told by pediatrician that that is not a separate disorder it is included in the autism. So her running up and down is due to the sensory needs- which is due to her autism.

I don't think you need to be embarrassed. DS2 freely calls himself autistic because he is. He has two degrees but you would know he's markedly ND within a minute conversing with him.

I think the overwhelming nature/ severity, however you wish to categorise it, of my child’s autism IS her learning disability. I stress that she has LD so that people understand she isn’t a maths wizard, or a music prodigy, and doesn’t have a superpower.

I don't know why the quote didn't work the first time but,

Functioning and severity are 2 different things. While usually it correlates there are autistic people who are severe - high functioning or mild -low functioning

I have a young adult with Down’s syndrome-I feel eternally blessed with my lot in life. We both have attended numerous support groups for special needs. My heart truly goes out to the severely autistic children and parents we met and those we haven’t. There was one child who was non verbal and ate wood -would literally chew table legs etc. and also double incontinent - and showed no affection whatsoever to obviously devoted parents and siblings -that really is heartbreaking for all the family.

Rainbowsandbutterflies1990 thanks so much for answering my question. I’m genuinely interested in your perspective and trying to get my head around it all.

Yes, sensory processing disorder used to be a separate diagnosis but is now included in the diagnostic criteria for autism. my first child received both diagnoses, my other a few years later, just an autism diagnosis.

Sorry if this is rude but I think this is sort of "inserting" yourself into the conversation. I definitely get your general point that disorders occur on a spectrum, but it's also sort of toxic to compare yourself to someone non verbal, doubly incontinent, needs 2:1 care etc.

That's literally OP's point I think – people who are at least nominally independent (as in you don't need a carer etc) pushing her son out of the conversation. Life is pretty fucking shit for people with ADHD and ASD even if they don't need carers, but there's no shortage of places to seek social support.

I would say actually your point that "just because I can do some things on good days, or if I push myself bloody fucking hard, doesn't mean I can always do them or do other things" is a really common part of the ADHD conversation. It may not be known to people with non ADHD but it's one of the commonly expressed sentiments among people with ADHD.

Whereas OP is saying she can't ever find support within the SEN / LD community for the level of needs her son has, which objectively I don't think can be compared to yours.

Sorry to ask again but I just don’t get it. How can something be that profound but have no
pathology, not have a cause, not show on a brain scan? It’s terrifying.

Brain scans don't show a lot of things. Most brain activity is chemical or neurological, nothing to do with physical structures.

The brain is very poorly understood. It isn't so much that it can't be seen, but more that we don't know what should be looked for, I think. They seem to think that some MRI features are more common in ASD, but I think that it's probably the case that the findings aren't very specific to ASD, so can't be used as a diagnostic indicator.

My son's paediatrician used to say the brain is so complex it's a wonder it doesn't go wrong more often
And yes, before anyone jumps on me I understand there are varying interpretations of ' going wrong '...

Totally this!

@helpmedothings yes you're right, sorry OP I didn't realise I'd pushed myself in so much

I don’t think MS is a useful comparison

What? Op was responding to me in extremely bad faith. It was basically a strawman.

Not sure what you are agreeing with, nobody suggested anything that would warrant the response you are quoting.

@whatwouldAnnaDelveydo You can have severe autism where you need 24 hour care and the diagnosis is simply autism.

what do you want in an ideal world for your child and your family

i worked in the most severe cases of SEN at a private school for 5 years and we did absolutely everything we could with our resources and support from local government

please tell me what you want

My sister has a severely autistic child / teenager
It nearly broke her. There’s no respite - well 36 hours a year was the ‘maximum they would consider’
it ruined her marriage. She describes it as having a two year old / terrible twos forever. She can’t leave him alone /he’s fussy about food / will eat non food items like grass /not toilet trained /doesn’t speak / has compulsive behaviour/ meltdowns etc

and she also feels guilty ( it’s not her fault but she feels that it might be somehow)
guilty that all their lives are affected. Guilty that the marriage ended due to the strain Guilty that her younger NT child missed out on so much as there just wasn’t enough time in the day for his needs too
It’s so tough

It’s such a mystery. The only ‘preventative’ measure that seems to make any difference is folic acid in periconception and the first few weeks of pregnancy, before most people even know they’ve conceived. It seems the folic acid neutralises the harmful effects of certain chemicals which can harm a foetus. I’ll see if I can dig the research out somewhere. It’s definitely something more women need to be aware of - taking the folic acid before and during conception and not just afterwards.

@Jdjdntbhh I don’t understand your post. Are you saying we should just be grateful if our severely disabled kids can go to school? What about when they are at home? What about when they leave school? And the part about ‘with our resources…’ sort of says it all

There is definitely a genetic link to autism in my husband’s family