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

I think it is because parents see how badly their child is struggling e,g, not in school and very anxious, and think how can this be mild or moderate.
But the truth is if your child is going to at some point be able to live independently or semi-independently, then their autism is not severe.

I also find it ironic that those that usually police it are the people that themselves have autism and although they may be sensory or have anxiety they can talk and use the toilet and look after their own children ect. There’s a huge difference. Pretending you don’t see it doesn’t help.

I agree. People don't like the term 'Aspergers' and I do understand why because of the Nazi connotation. Hans Asperger was 1) of his time and 2) bike. But there is a distinction and to not replace it with a different term is stupid.

I don't think NT people on this thread are in any position to judge or pass comment on any autistic persons life experience or needs whatever their functioning level or support needs are because they have zero idea on the impact of the condition of that person. Phrases like 'mild' autism are just ableist crap and they are dismissive. 'Mild' autism is mildly impactful for the people around the autistic person not the person themselves.

Equally, despite also being an autistic person with autistic children I'm not in a position to claim that I know what the OPs life is like/how it's impacted, or the OPs child for that matter. Because despite having the same diagnosis, it's like comparing chocolate and cheese.

Some distinction is required especially in terms of support services. However, NT people leading the charge for this when really they have no clue on the realities of personally, themselves living with ANY level of autism isn't the answer.

Phrases like 'mild' autism are just ableist crap and they are dismissive

I have an autism diagnosis and have also posted that I agree my condition is mild compared to people affected like OPs child. How could it not be?

I think calling it "ableist crap" is actually very dismissive.

@thumpsthewastrel

Some of the NT mothers on this thread are parents of Autistic children and the ones who I know of readily advocate for their children's rights. So how dare you say that mothers have no understanding of the impact of their children's Autism.

I didn't say that did I. 🙄 I said they have no idea what it's like to be impacted as an autistic person. Because they are not one, so they can't.

That's not to say that their lives aren't impacted by being a parent of an autistic child. Of course they are. Don't imply meaning to my words that isn't there.

Yes the people with autism and LD their autism makes a massive impact on their quality of life. The sensory seeking only eating certain foods, becoming food motivated unable to wear any clothing , not wanting social contact ,property destruction, spinning very fast, smearing , forced vomiting and rubbing into the skin , listening to the same music on repeat or a huge incident will occur. I look after many people with LD and there's people with severe LD without Autism and they have different difficulties and needs.

Your condition is very different (as is mine!).

If you choose to call it mild in comparison to the OPs child then that's entirely up to you.

But as a generalisation, mild autism is not a thing.

I agree entirely with the need for distinction. For me, mild/severe isn't it.

@thumpsthewastrel clearly mild autism a thing just observationally! Here we are posting articulately while some people are affected to the point that they will never speak or have control of their own bodily functions.

You're also attempting to dictate your views as if they are objective facts.

In addition, I suspect what you are posting is simply confirming the point OP has made in the first place which she has found so hurtful and is struggling with.

I'm received my ASD diagnosis , I had it done privately as I don't want it on my public medical record. Diagnostic over shadowing is a huge thing. I work in the field and I've suspected for a long time, it's become my life's work studying others behaviour and learning as I didn't naturally get socialising. I dislike loud noises I'm obsessed with video games , certain music and only like particular foods. I was bullied throughout primary and secondary, I find masking exhausting. But I'm married , I have a child and I hold down a full time job. I have a good quality of life and I don't think my experiences compare to ANYTHING like the people I assess and treat.

"mild" Autism is how others see it though. Wouldn't call being so sensitive to noise, light, texture, etc and struggling with crowds to the extent that I've refused to attend small group things "mild"

In comparison to a child who has a meltdown when a person comes near them, like my daughter was around an year and half ago I would could that milder yes.

@Feefee00 aside from having a child I suspect we are similar. Of course my condition has caused me profound issues at various life stages, which I won't be detailing as I'm trying not to me-rail. But no-one could say these are remotely similar to those of someone who will never live independently, and objectively yes clearly they are far milder.

I feel like there is some sort of ideological push to deny this, for some reason, and I feel deeply sorry for people like OP and that they get a complete raw deal and are terribly excluded as a result.

"mild" Autism is how others see it though. Wouldn't call being so sensitive to noise, light, texture, etc and struggling with crowds to the extent that I've refused to attend small group things "mild"

Mild is how I see it, for myself, and I have all of the above. It just doesn't compare to the severe end of the scale and I'm sorry for using that term but literally I don't know how else to put it.

But it is mild. It does not make your struggles invalid, your struggles are real.
But you are clearly not like the severely autistic people the OP is talking about or you would not be able to participate here.

I think some need to volunteer with people with autism and complex needs to fully understand what we mean. It is hidden really from public view, like we plan for them to go out certain times of the day and venues to protect the person and the public. So it's not something the average Joe will come across much in their lives. The people with autism with high needs but average - high intelligence usually have a comorbid mental health condition OCD is the most common one.
I have seen people struggle to get dressed and will spend 6 hours doing it so have poor quality of life and need a high level of support to maintain their ADLs. The OCD controls them it's so sad.

That's a word that might help stop the arguments on here.

Can we agree that some people's autism is RELATIVELY mild compared to others? It might in itself make their lives difficult, but in the context of this OP, which is about parental load, some parents are dealing with caring for children whose autism is relatively mild compared to her child's. And some autistic adults whose condition is relatively mild need to empathise with her situation (and her child's) rather than pretend they don't exist.

It's lovely to read so many autistic posters doing just that. Only a minority here seem to resent OP having this thread as a space for her and those who understand her struggle.

Just because a child is high functioning doesn't mean they are mildly autistic though. Severe - high functioning is a thing

What does that ‘thing’ look like?

You can be high functioning and still be non-verbal, not toilet trained, display VCB, need 24/7 care, have little to no sleep… All ‘high functioning’ means in the true sense of the phrase is the person’s IQ is70+.

Functioning refers to iq, so a severe high functiong autistic could be non verbal, not able to use a toilet due to sensory issues around interoception meaning they dont know they need to go, they could stim a lot and have lack of awareness of safety issues but they could have a normal iq and use other communication methods to learn to read for instance.

I agree that it would be helpful OP. My daughter has an ASD diagnosis, she is verbal and has no learning difficulty but no social, emotional skills and poor executive function. I think an Asperger's diagnosis would have fit her perfectly. I understand why the name is no longer used but I think it should have been replaced rather than dropped entirely.

We do struggle to manage her behaviour but what we experience is totally different from you and the parents of other severely autistic children.

Different levels/names whatever can surely only be helpful to help differentiate what support they need and what management is appropriate? I don't understand why anyone would have a problem with that it's just crazy.

From the Cambridge dictionary-

High Functioning
(of someone who has a mentall healthh conditionn* or a brainn conditionn that affectss theirr developmentt) ablee to do a lot of things that other peoplee* with the conditionn* cannot do:
The most severee^ casess^ of autismm^ requiree^ lifelongg^ supportt^; other autisticc^ peoplee^ are high-functioning.

This article will also help people to understand what high functioning means in terms of autism.

senmagazine.co.uk/content/specific-needs/autism-asd/7801/what-is-high-functioning-autism/

It's not about your IQ result.

Probably what you imagine a severely autistic person to present as but with normal to profoundly gifted intelligence.

Think of a tween who can describe and demonstrate in detail the mechanics of a pin setter/ball returner and the physics of bowling but it takes months of preparation, a 3 to 1, a quite calm ally, and a harness to go bowling, and it's a win because only 1 person was harmed

‘High functioning autism’ as per the criteria before all diagnoses were merged under the umbrella of ASD was/is defined by IQ. It meant/means IQ 70+ but with a language delay as a young child (IQ of 70+ without language delay being Asperger Syndrome). Here is one study discussing that, but there are many other articles and studies stating the same. The problem comes from people using it to mean other things.