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

@Moonicorn

I would be careful. There was a young 8 year old boy I met who appeared so high functioning that I couldn't believe he was Autistic. Met him again at 15 and wow, his Autism is significantly impacted. Just because someone appears high functioning earlier does not mean that their Autism will not become disabling- and the other way round, just because someone appears "low functioning" earlier does not mean that they will still like that once they hit teens and adulthood. I find that some parents are lax with their "high functioning ASD kids" and don't bother to put them into specialist therapies, further support social skills etc. The ones that don't do this end up with children who become far worse in their teens and adults.

camhsprofessionals.co.uk/2021/03/31/the-autism-spectrum🌍/

That’s a simplistic explanation but more like a spectrum of abilities in different areas than linear

I think this is part of the problem, people using ‘high functioning’ and ‘low functioning’ to mean something other than it’s actual meaning i.e. whether IQ is below 70 or 70+.

I can see how it must be really demoralising to feel excluded from activities that are supposed to be targeted to people with autism. People being horrid because your child is stimming / making noise… I can’t understand why anyone would do that and I feel angry on your behalf. It’s not acceptable. Your child has as much right to see the film as anyone else and is arguably less able to access the everyday screening than my child who is sound sensitive.

As a pp said, we often find that the autism friendly sessions don’t work. They can’t meet everyone’s needs and lump all autistic people in together like that.

even in a household with several neurodivergent people, we have conflicting sensory needs. Some people needing to make loud noises and stim, others overwhelmed by that, someone triggered to meltdown by someone else’s loud meltdown etc. My child finds the autism friendly sessions too overwhelming and unpredictable precisely because some autistic people need to make noise and can behave unpredictably. My child is also very likely to scream throughout the ‘normal’ session due to overwhelm, despite being verbal and ‘high functioning’. I often feel sad seeing other families enjoying days out and it is just hard work and meltdowns for us, my autistic child hates every minute and my neurotypical child misses out.

What you are suggesting is training ‘high functioning’ autistic children to mask their autism which is far more likely to damage their mental health and cause issues later.

when my first child was diagnosed, I thought that my job was to ‘teach him social skills’. I deeply regret that I didn’t respect his perfectly good autistic ways of socialising.

I can completely see that children like the OP’s child are ‘low functioning’ on ALL areas of the spectrum. Even though it isn’t linear. They absolutely are impacted differently than my children.

Two of my children can’t access education at all. I am confined to the house sometimes because one can’t be left and leaving home triggers enormous meltdowns. All my children have hurt themselves in meltdown, one needing a&e for broken bones. We have furniture smashed. I’ve had a black eye. We have entire days that are non stop meltdown and phases where every day is like that. I’ve had to give up work.

I guess though the difference is that my children do have the cognitive ability that means there is hope this might change and there is hope for their future independence. They may be able to understand and manage their sensory needs and anxiety. They may be able to manage better in their future. I hope so. I do have massive empathy for the OP and others whose children will definitely never develop that level of understanding

Reading how people have felt about the feedback questionnaires has been hugely helpful for me if I am ever in the position of seeking feedback for anything.

I guess I would have assumed that a parent would be able to interpret the communication of a non verbal child to fill it in for them, and wouldn’t have wanted to assume they couldn’t have an opinion. I might inadvertently have made those families feel excluded. I’m glad I understand this now.

Local to us, the support groups seem to be attended by those with profoundly disabled, non verbal children. We went a couple of times but felt that we weren’t autistic enough. It seems from reading this thread that some families have had the opposite experience

If I ever get to the point where I have capacity to run a group, i will set up one which is geared towards parents of high care needs children, and do group bookings to cinemas and shows and museums and make the parents a cup of tea and lumch.
A lot of support groups are run by parent volunteers and the parents too busy caring for extreme needs havent got the mental space to organise a group. I'm not in a position to do it right now but it seems like a real need. I know statutory services are the main area for support and I will keep lobbying parliament. But much of the stuff out there is just mums that made a group up so I aim to make a group.

YANBU OP!
My son is Autistic with learning disability, non-verbal, incontinent, sensory processing difficulties which can cause meltdowns, sleep is inconsistent etc

My friend also has an autistic son. He can speak, toilet trained etc and is doing well at a Sen unit attached to a mainstream school.
She once told me that I was “so lucky” that my son is so severe as “he gets the help”. By this she meant an EHCP and special school place.

She is a nurse and works for CAMHS!

People have absolutely no idea what it’s like. The care level for many of us is akin to those exhausting newborn and toddler years with nappies, tantrums, lack of sleep or any time to ourselves - but every day for the rest of our lives.

when my first child was diagnosed, I thought that my job was to ‘teach him social skills’. I deeply regret that I didn’t respect his perfectly good autistic ways of socialising.

That's hardly a helpful comment on this thread, though, is it? I don't think the majority of children here have 'perfectly good autistic ways of socialising' which are working well for them, their parents and families. I don't think you read the room well here.

what are “perfectly good autistic ways of socialising”?

Exactly. Whether your like it or not. Whether your "high functioning ASD" or severely impacted. Autism is hard work and can be debilitating to a person's quality of life.

That’s a fair point and I apologise if that’s the case. I’m autistic so reading the room perhaps isn’t what I do well.

it wasn’t meant to be an insensitive comment or to apply to the OP’s child. It was a direct reply to the poster who said ‘some parents are lax with their high functioning autistic kids and don’t support social skills’ - apologies if it wasn’t clear that my comment wasn’t in relation to the op’s child. It clearly isn’t relevant there

Direct communication
Information giving
parallel play
Telling relatable stories
hyper focus on special interests
stimming
non-reliance on non verbal cues

just off the top of my head. Only answering because you asked btw and obviously this isn’t relevant to the OP’s child.

I also hate they way some high functioning ASD adults, distinct themselves away from people who have more impacted by their Autism and give an excuse that it's because of their learning difficulties. The fact that the child can't speak, is now due to Autism, it's due to learning difficulties, the fact that the child with Autism can't understand feelings, is to do with their learning difficulties. FYI, it is down to their ASD. The fact that the child always crosses the road, even when there are cars driving past, is to do with the ASD as it impacts understanding of social rules, perspective taking. Some of these children who do experience the above challenges, do not have a co-morbid learning difficulty. It is primarily due to ASD.

@FatGirlSwim

No no FatGirlSwim it's to due with their ASD not Learning Difficulty. Sorry to disappoint.

thumpsthewastrel
Interestingly, and contrary to belief, Aspergers IS still diagnosed.

Well that is good news, but infuriating that the NHS no longer use it.

I am so angry about this. What bunch of "woke" idiots decided to take this label away "because Nazis", and not replace it with another word?!?!

My brother has Aspergers. He made an absolute fortune in computer programming and retired early. Yes, he has struggles and problems, which have caused him damage and unhappiness, but it is frankly appalling that he and the OP's family have to use the same word for diagnosis. It is so not helpful to either our family or the OP's family that we have to share the same word.

I have started to use the term 'high-intellect autism', which I think is a little more accurate than 'high-functioning', because someone can be highly intellectual (not necessarily even high IQ) and still not be functioning well in the world.

I understand the 'spiky profile' concept, that it is a multi-polar condition, but perhaps the single most important of these dimensions is the verbal/cognitive one, as that may be the one that is key to unlocking life pathways.

I hear you OP. Words are not enough, but I hear you.

I disagree with you. I wouldn’t change my autism or my child’s.

I’m not dismissing or minimising the OP’s experience or anyone else’s. I’m seeking to understand it and assimilate that with my family’s experience of autism. Which isn’t without its difficulties.

but autism is a processing difference and impacts everything about the way a person experiences the world. Including thoughts and feelings and how we feel about people we love. Personality and preferences, etc. I wouldn’t be me if I wasn’t autistic and neither would my children, so even though being autistic in a neurotypical world had it’s difficulties it isn’t a discrete thing that we could lose without losing who we are.

It undoubtedly does impact people in different ways, and for people who also have a learning disability and limited understanding of their environment, their lives and those of their families can be astronomically difficult. I’m certainly not wanting to diminish that and I would hope that speaking about sensory processing and having these conversations can only be helpful to ALL autistic people.

I think we can hear the parents of profoundly disabled children without belittling the experiences of verbal autistic people / those without learning disabilities.

Isn’t it ironic that whilst suggesting that autistic people have poor social skills, you’re the one being hurtful, rude and snarky to someone who is listening to alternative perspectives

I disagree with you. I wouldn’t change my autism or my child’s.

I actually think it's so tactless of you to post this on this particular thread, given the absolute desperation of the OPs posts relating to living with her child's autism. Just the wrong place for it.

I was about to post the same, this is a tastless comment in this situation. The fact you have posted that and you believe that shows exactly why just the term autism can not be used for the whole spectrum.

I’m not trying to distance myself from any other autistic people when I say that. It’s others saying ‘this isn’t the same condition at all’?

I don’t wish to distance myself or ‘other’ anyone. I actually hope that by articulating sensory overload, rigidity of thinking, need for certainty and control, and other differences that autistic people all have in common, that might increase society’s understanding of those things for ALL autistic people.

Some people with autism, my child and myself included with some of these, have severe anxiety, selective mutism, adhd, ocd, as comorbidities. That obviously impacts the way their autism impacts their lives. Same with learning disability. That’s all I meant.

I’m very aware that autism without a learning disability can severely impact lives. As I’ve already said, I have a child who is academically fine but can barely leave the house and can’t access education. I think dismissing that is just as bad as dismissing the op, to be honest.

we should be able to share perspectives and all develop our understanding without being unpleasant and dismissive of others.

I honestly apologise for any offence caused. Perhaps I’m not expressing myself well. But I don’t think any person can be separated from their autism.

Of course we can all wish that our children and our families didn’t have struggles.

You are also making massive assumptions about my experience which I’m not going to correct, as my posts are becoming identifying and I know have been seen by at least one family member. I need to protect my children’s privacy by not detailing our dark days on the internet.

I’m going to bow out of the thread as my intention, which is to understand and learn more as well as giving a perspective on why I do believe the term ‘autism’ should apply to all autistic people, clearly isn’t being perceived in that way.

I would hope that it possible to understand the OP without being derogatory and dismissive of other, verbal, autistic people. I don’t think that’s helpful.

OP, life sounds incredibly tough, and I’m not pretending that our experiences are the same. Families like yours are obviously being let down by the system and by society, and if I could do anything to help, then I would. I hope somehow, for you and your child, things get a little easier, and I believe that all your efforts to care for your child are worthwhile and superhuman.

@FatGirlSwim

Putting a child into speech therapy is not teaching them to mask, supporting a child to understand the different perspective of others is not teaching them to mask, putting a child into sensory integration OT who is impacted by sensory dysregulation is not masking. Therapies are all unique and different.

YANBU I don’t know why some people want to pretend that everyone with autism is effected the same amount but in different ways when it’s clear to see that isn’t the case. With any other illness or disability we are allowed to state when someone’s diagnosis is more severe but for some reason a few people have decided to police that for autism and it really doesn’t help those that are greatly effected and their caregivers. Our paediatrician said that although it was outdated he still uses mild, moderate and severe to distinguish the difference and I think that is important.