Autism

[lolly07766]

I know there are many threads concerning this subject, I've just read one now.
I have a son with severe autism, limited communication and obvious learning disabilities, aibu to think the diagnosis/description should be changed for high functioning people, as opposed to those who have serious disabilities.

YABVU.

”High functioning” is an offensive and unhelpful label, which minimises and undermines the struggles of those considered as such.

Generally speaking, it is applied to those who are verbal. Speech =/= lack of disability.

@Shelefttheweb I wish you actually would leave the web.

Your ableist post is disgusting.

We currently can't envisage my girl being able to live independently but she was able to speak in full sentences at the age of 18 months, knew all the initial phonic sounds by 2 years and could blend CVC words by the age of 3.

Aspergers has been thrown away as a term because of the person being a Nazi. Personally I think there should be a distinction made between the different types.

I have two autistic children and both are high functioning. One attends a private Catholic school and the other is at a private special needs school. The goal is to get them to academically strong schools with excellent pastoral support.

@SimonRileysGhost 👋👋👋well said, couldn't have put it better. Well done to you for keeping on I gave up years ago, I've got no strength left my life is very limited because I'm just used to being called the freak/ oddity etc I just hide away. Good on you for being strong.

But is the reason it is a spectrum because it isn’t a single condition at all, but rather a wide range of different conditions? Each with profiles that follow more closely to others with the same condition rather than those with different ones?

Well aren't you delightful people 🙄

Don’t talk nonsense! In what way is it ableist to suggest for example fragile x and Rett’s syndrome are separate conditions not just ‘autism’? And your response is what I mean - throw out accusations of ‘ableism’ rather than consider that autism may actually be a range of conditions.

The aweful thing is the difference in help children are getting, it's inconsistent. I do think autism doesn't mean the same for everyone, but should mean they get help to support them. At school there's a very high ability child with autism who gets higher funding than the non verbal child who can't access any part of school or interaction whatsoever. That's unfair.

Yes I agree with you, but this thread will turn into a bun fight and get removed.

It makes no sense whatsoever that someone who is non verbal, doubly incontinent, self harming, with no awareness of danger whatever and who needs adult intervention 24/7 to function, somehow has the same diagnosis as someone like Chris Packham.

Aspergers has been thrown away as a term because of the person being a Nazi.
this isn’t why the scope of the diagnostic criteria changed. All German Drs working in Germany during the war were expected to join the nazi party. All would have had to follow directives. It wasn’t braver to desert your patients and run for safety.

I dislike these discussions because there is so much upset caused. I think most autistics who can make a reasonable copy of neurolotypicals fail to really appreciate how much more restricted life for those that can’t at all is. It feels minimising to them to point it out. It isn’t that I think high functioning articulation autistic people are living with huge challenges, it’s that there are people who are unable to shop, cook, eat, wash, keep themselves safe etc etc. So we keep quiet, and we accept that even speaking about it isn’t ok and the world gets smaller because there’s a group who’s are offended by not being the most limited.

yes of course - its not autism.
many children today do not have "kanners autism" it shouldn't all be lumped on a spectrum.
as others have said, a non verbal, hyper, incontinent, non eating, non sleeping child should not be in the same category as some one "who likes to tidy a lot or wash their hands lots" - for example.

of course the rates are increasing, of both the new autisms and old autisms. more diagnosis may account for some of it.

However, you can bet a non speaking, violent, non sleeping child would have been diagnosed and medically documented 50 years ago - these children were not like this, more needs to be done to identify a cause for the increasing numbers of the non functioning people.

Especially since countless children are recovering and snapping out of their unpresent state.

Why does this argument always come up for autism specifically?

It is TOTALLY NORMAL for a diagnosis or a medical condition to encompass people with a huge range of different experiences with that diagnosis or condition.

Put ten randomly-selected people with a diagnosis of multiple sclerosis or dyslexia or Ehlers-Danlos syndrome in a room, and you'll have ten very different experiences. There will be those who could very well go through life without colleagues or acquaintances ever realising they have a condition, and those whose condition could never conceivably go unnoticed.

With autism and Asperger's, while the two diagnoses were previously treated as separate things because they could appear quite different, in reality they're very difficult to cleanly distinguish from one another for a big chunk of the people concerned. In the diagnostic manuals, the only real difference between the two conditions was whether there was speech delay.

When they looked at adults, they found that there were quite a lot who had had speech delay as children who were clinically indistinguishable from those who hadn't.

And there are so many families that have members with both Kanner-type (for want of a better word) and Asperger-type autism, as well as unaffected members, that it seems likely that underneath all these different types of experience within a family, there's something similar being passed on that comes out in different ways.

I would agree that there are probably several conditions that we currently diagnose as autism that actually have distinct underlying mechanisms and causes, and hopefully at some point enough research will be done to distinguish all of these and determine if anything should be done differently depending on the underlying reason, but there doesn't at the moment seem to be a good medical reason to split autism back out into separate conditions along the lines of Asperger's syndrome and autism.

People just don't argue this for other conditions as regularly as they do for autism — that people with the same condition or diagnosis as their children, but whose difficulties are less obvious, should be given a different diagnosis. It's considered quite normal in most conditions that the same diagnosis can apply to people whose conditions affect them very differently.

Is it backlash against vocal adult autistic (or sometimes dubiously self-diagnosed) online advocates and activists?

I can understand both sides as I have 2 DC with asd, one very verbal and one non verbal with gdd. Both very young at present but both unlikely to live 'normal' independent lives as adults. I'm not sure which one I worry about more tbh. The non verbal DC will likely need 24/7 care as an adult which has its obvious concerns. However, even now at their young ages, it is harder when out and about and even with medical professionals as the verbal DC appears at first glance to be 'normal' and therefore age related expectations are there but given his asd he does not meet them if that makes sense? The non verbal one is clearly disabled, and the general public and doctors etc are much kinder (at least at the moment) towards them. I think one of the biggest challenges is that public awareness of asd is more at the 'high functioning' level - 'what is their superpower?' Whereas the 'lower functioning' one is less known about. Obviously there are reasons for this, in large part being that they don't have a 'voice' other than through their care givers. I do understand higher functioning autistic people only wanting to talk/hear about lived experiences of fellow autistic people but this has the outcome of silencing the struggle of the non verbal autistic community. This is what the care givers of the lower functioning autistic people find upsetting.

It does seem odd that very disparate outcomes are labelled the same thing. I still see twats still saying "everyone is on the autistic spectrum" too 🙄

I haven’t seen one of these threads for at least a couple of weeks. My bingo card is filling up nicely.

YES, YABU. What a silly person you are. Offensive, ignorant. You know fuck all about my child’s life with autism or anyone else’s.

This is all I’ll say, you don’t even deserve the minute of my time this has taken.

Don’t feed the.....

Do you think it's odd that someone who occasionally feels a bit tight-chested when they run has the same diagnosis as someone who often struggles to breathe and regularly ends up being rushed to hospital for lifesaving treatment to stop their lungs closing up altogether?

I mean, yeah, people use modifiers for asthma like "mild" or "brittle", but then a DSM diagnosis of autism spectrum disorder will be specified as level 1, 2 or 3 to quantify support needs.

I think your reply is a bit unfair. The OP has a child whose asd and comorbidities means their ability to participate in every day life are a huge challenge. This does not take anything away from struggles your own DC have?

As I said, I have 2 DC with asd and yes they both struggle with every day life. But I can see why people whose DC cannot communicate, even basic needs, would find it difficult to understand how autistic people who can access aspects of life that they could only dream of for their DC might feel that that one umbrella of asd doesn't begin to convey the difficulties of their DC.

I'm not sure it's accurate or fair to say this. The people I suspect you're talking about are probably struggling with understanding their DC 's needs. Not everyone has insight into autism or they may be an undiagnosed autistic person themselves. You sound like you don't understand the wider issues, which is a shame as it's an extremely complex topic and the behaviour of children with autism is misunderstood and badly managed. Mostly through lack of understanding around what the child is communicating through their behaviour.

@JarByTheDoor I can see your point. However evels are not given in the UK. The argument being that it implies that those with the 'mildest' level (for wont of a better word) have less difficulty/need less support. Whilst true in one way, as has been pointed out on this thread it really only means that these autistic people have less of an impact on those around them. I think this is one of the big issues tbh, that these autistic people are deemed to be less affected yet often struggle horrendously in private.

Interesting challenge. It doesn't seem that ridiculous to me, in that a range of presentations is normal with a medical diagnosis. MS can be relentless and debilitating or someone can live with it for 50 years and stay mobile and living independently into their 90s. I think some kinds of cancers are so low grade that they are not even always treated. Most patients are put on "watch and wait" for years. Others kill nearly everyone within a few months. No one says they can't both be cancer. Lots of genetic syndromes have a huge variation in impact, particularly in terms of learning difficulty.

However I absolutely agree that we need some language around subtypes or something. Levels 1-3 don't work for me, and I am positive DS would be categorised differently at different ages, and when he has different levels of support in place.

Also by definition autistic people have varying levels of communication difficulties, and it is very problematic that the non-verbal and less verbal get sidelined in discussions because there are others who are also autistic but are far more fluent and take up more of the conversation space, including online.

Considering you actually live with an autistic person and then say about those seemingly living a normal life is hurtful tbh...I got good at masking years and years of bullying at school so bad the teachers eventually suggested to my parents maybe I should be home taught. Years of judgement and alone time at uni, years of being segregated at work etc. Oh I got good masking while dying inside