ASD…. Should there be another name for a more ‘severe’ version.

[iminvestednow]

Please forgive me as I’m new to this, I have a son with Autism. This is his only diagnosis. He is a beautiful, kind and wonderful son.

DS struggles greatly, although we have made fantastic progress in so many areas he will still never lead a ‘normal life’. He has no concept of friends, money or any social convention, he will need help to get by forever, he is extremely vulnerable.

I’ve noticed recently (great that people are more accepting) a lot of people saying, I’ve been recently diagnosed with autism aged 40 and it’s helped me so much. I think it’s great that people are getting support but does it dilute what severe autism is? Most of these people are competent fully functioning members of society and will never need the kind of help my son does. Should there another term to differentiate?

There is no need to differentiate. Every case is different and treated according to comorbity need. You don’t get anything for just being autistic. Massive struggles with mental
health and crippling anxiety are just as deserving as learning difficulties.

Autism affects everyone differently and can also evolve and change as a child grows up and experiences different environments, expectations and levels of pressure.

And some autistic people, like my relative, will reach adulthood still nonverbal, and still requiring full-time intensive care. In a few years, when his parents die, he will be permantly institutionalised for the rest of his life. And at no point in time will he be online discussing the minutae of his traits or illustrating his stuggles via colourful diagrams.

Of course there’s a need to differentiate that’s why we categorise MH conditions, so the right diagnosis can be made and the right help given. There is no other condition in which the people living with it have NO overlapping features and it’s all done on an individual basis. It defeats the point and renders the word meaningless. I have OCD, I share traits with other people suffering with OCD. They don’t call all MH conditions ‘OCD’ then just say ‘well it affects every person differently’.

It's not about being deserving..having different labels ensures everyone get what they need.
My 'High' functioning daughter is catered for more than my profoundly autistic daughter in the majority of settings.
They both have the same diagnosis buy massively different needs.There is not enough training in education and health care or information for the general public for the umbrella term to be used.

I have taken to describing our son as "autistic with severe learning disabilities" as it is not his autistic traits that impact his life but rather his low level of interllectual capability. It works to defelct those comments of "oh so-and-so has an autistic son who is a genius at maths" - our son doesn't know what a number actually is.

I am pretty sure that DS couldn't learn to mask if his life depended on it (and in former days, with the attitude that aggression could be beaten out of a child, it might well have done; people with ADHD are also more likely to suffer accidental injuries, and he can't mask "lack of awareness of danger" and "impulsivity" though I gather some people with ADHD can mask impulsivity some of the time).
Are you lucky that you can mask? I'm not sure.

Can people with autism who can't ever talk, can't do any self care, or possibly even feed themselves, able to mask those difficulties? No.

So it may possibly come down to the proportion of time you can do things for yourself (ranging from "never" to "almost always").

I guess some will see it as lucky.. and in a way it has afforded me some safety. But it comes at a cost which bumbe up the risk to other things.

Also just because I can mask some things .. doesn't mean I don't find my self in dangoures situations and taking risky actions .. ethier due to imposivity, not actually seeing danger... Or from being taken advantage from due to not being able to read people or understand situations.

I see what you mean by the proportional if time it effects you... But that can change daily to... Some days I can't do anything but sit in my bed, staring at a wall willing myself to get up and do something. To go toilet or feed myself but I won't.

But again.. that will be some one else constant. .. though I am sure every one has good and bad days of any condition they have.

I don't know what the answer is but minimising some one struggles because they aren't as sever or the same as some one else's is not the way to go.

Thesmallthings
So what your saying is don't learn to mask your struggles then you can get help.

I learnt to mask by being builled by children ,teachers, shouted at and punished into "normallsy" my family.. by near every one in my environment.
And by mask I mean making my self small and invisible so no one took notice of me.
But fuck us right.b

I am pretty sure that DS couldn't learn to mask if his life depended on it (and in former days, with the attitude that aggression could be beaten out of a child, it might well have done; people with ADHD are also more likely to suffer accidental injuries, and he can't mask "lack of awareness of danger" and "impulsivity" though I gather some people with ADHD can mask impulsivity some of the time).
Are you lucky that you can mask? I'm not sure.

Can people with autism who can't ever talk, can't do any self care, or possibly even feed themselves, able to mask those difficulties? No.

So it may possibly come down to the proportion of time you can do things for yourself (ranging from "never" to "almost always").

Bloody hell @drspouse what an appalling way to speak to someone who has suffered so much and lived through bullying and abuse.

Research shows that masking does huge damage to mental health. No, it is not "lucky.

You should be so ashamed of these comments. This is one reason so many autistic people feel cut off from what little support is available: many support groups have been completely taken over by NT parents of autistic children who don't really grasp the different presentations of autism and what is underlying them, especially if their own child doesn't mask, and then start telling autistic people about their non-professional judgement on that autistic person's experience rather than listening them to get some insight into what it can be like to actually be autistic.

Though it used to be people with less severe autism were quirky or a little eccentric

And if you actually spoke to many of those diagnosed very late, you'd realise how traumatising and isolating this was for many people.

There are not "most typical profiles". That's the point.

Masking only benefits the people who come into contact with the person masking not the person themselves, or those who have to help with the fall out.

ds masking at school the past couple of weeks is what has led to him being in complete shut down today.

My DD is autistic . She has no learning disability, highly verbal and articulate and ‘appears normal’ to most people who can’t believe she is diagnosed .I have. Nephew who is also autistic with a learning disability, delayed speech, lots of sensory issues and who people can tell has some kind of disability. When my DD was diagnosed she was a bit confused as her autism doesn’t look like her cousin’s. We found a book explaining Asperger’s in child format and language and she really identified with the book. We explained that the term Asperger’s is no longer used and why. Her autism can be severe though in certain situations which trigger anxiety attacks. She rarely presents with these in public and like may girls she masks a lot and was diagnosed quite late on. She does have sensory issues but most people wouldn’t notice - she wears in ear type ear defenders or air pods rather than obvious over the head ones. We buy clothes we know she likes - lots in the same style. But we have had meltdowns in the home which have gone on for 6 or so hours that people outside our home would never see. I’m hoping she will go to college possibly uni and get a decent job but I do worry about how she will manage independently when she gets older. She doesn’t need full time care but she needs a lot of guidance and support in smaller bursts. But other than low rate DLA we don’t get offered additional support at home or school as she coped with reasonable adjustments.

I can see why the labels were taken away. But when I tell people (new teachers or groups she starts attending) that she’s autistic they look at me in slight horror until I back it up with - no learning disability and usually no behaviours issues outside of the home. But then I have to remind clubs about her being autistic when she comes home distraught about things such as timetable changes, group changes, room changes etc which haven’t been communicated in advance. They don’t see her reaction to those changes but we get it when we get home. Then the anxiety builds up about going again the next week.

When my DD was diagnosed she was a bit confused as her autism doesn’t look like her cousin’s.

The learning disability is massively relevant here.

@ohioriver you asked what an "ASD school" is. Well my daughter attends a local authority SEN School which specialises in Autism. All the children there have autism but obviously all very different 'levels'.
Some of the other SEN schools we looked at are for children with many different disabilities. Some of these schools are just for children with PMLD (Profound and Multiple Learning Disabilities). Some are a mix.
But basically a ASD school is a school for children who are autistic.

I have one autistic child and one child with ADHD, both have more of the positives attributes of these diagnosis than the negatives (obvs there are some) I think we need better terms.

People tend to question my DCs diagnosis and the perfectly reasonable adjustments that they need. (Wider family being the worst for this). Thankfully their school is fantastic.

Thank you for this. I couldn't find the words to express it. Also, could I please have a link to that diagram?

Do not be ashamed at all @drspouse.

You are completely right. The fact that listening to actually autistics means that they have thd ability not only to communicate but to articulate already shows that this group of people likely have very little idea of what someone with profound autism is like, what their life is like, what it's like to care for them or how autism impacts them.

A partial group of people cannot advocate effectively for all people with autism especially when some of those people cannot communicate . Parents and carers of this group in particular are best placed to advocate for them.

onlinelibrary.wiley.com/doi/full/10.1002/aur.2876

The above linked article explains this very clearly.

So better not to take an interest, try to understand, try to find out how we can help or offer support.

Right you are

@TheHappyDaze I said I wasn't sure if someone was lucky if they could mask, did you read what I said.

I genuinely think that DS would have been severely abused if not killed by some parents in some former times, given the prevalence of physical punishment, due to his inability to mask. For him, it might have been life-saving to be able to mask his aggression. In case you didn't know, he's adopted, and his birth parents both exhibited DV and I have no doubt at all that his birth dad would have abused him (as he did birth mum) had he been as defiant and aggressive as he is, in his birth family.
Children who have a disability are at greater risk of abuse. Being able to mask may reduce that risk especially if the parent is struggling to cope/has similar issues themselves.

(Also, I'm pretty sure being angry all the time and taking that out on family members and teachers isn't any better for DS mental health than being angry all the time and hiding it. Ideally, we'd help him work out what is making him angry and he'd be able to express it without hurting someone, and it would be JUST FINE for him to hurt DD every single day without her growing slowly to be afraid of him and not want to spend time with him, but we don't live in an ideal world, and I won't apologise for telling him it's not OK to hurt her - or us - when he's angry).

But no one's doing that. It seems to just be supposed high functioning adults being told we don't need support. And how because we talk, there can't be much wrong.

Yanbu I'm not sure what it would look like, as I think there would have to be several levels. But I do think this would be helpful.
Also not including self diagnosed people in various stats.

@Hardpillow thank you!

Reduces me to tears when people who can articulate themselves try and talk on behalf of a non verbal doubly incontinent person in nappies, needing 24/7 supervision when awake and restraint in the public with zero danger awareness

Nobody on this thread is saying that though? People are talking about differing needs and how acknowledging them can lead to the right support for each individual.