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.

Though you're right that it doesn't make as much difference now, I'd be wary of assuming that hyperlexia can be safely put in the past once they're old enough that they'd be expected to read anyway.

I was hyperlexic (started identifying brands and symbols at 18m, fluent reader of pretty much anything by 3, at 3½ was discovered at nursery sitting in the big chair in the story corner, reading a story out loud with several other children sat round listening, was never taught but apparently picked it up from being read to) and have talked with other adults who were hyperlexic as children, and although the broader relevance of my and their experiences is somewhat limited by the fact that I was only able to discuss it with people who can and wish to talk online about it, we identified some noticeable similarities in the way we think, and in some of our life experiences, that differed from those with ASD and no hyperlexia.

For example, despite the fact I learnt to speak largely normally, alongside learning to read, I have always experienced my word-thoughts as something more like a ticker-tape of text words than a string of mental speech. This means that when people speak to me and I speak back, I'm often translating back and forth from text to speech and vice versa, which can slow things down and makes the whole thing much harder work than it probably is for someone who thinks in sound-words. I came across several other people who'd been hyperlexic who agreed that their native thought medium was text, too.

There are also difficulties with relevant materials and unreasonable expectations — I was tested at a 14+ reading age (i.e. adult, on that test) at infant school, meaning that age-appropriate and interesting but challenging reading materials could be awkward to find, and that expectations of my abilities were too high in other areas. My urge to constantly read meant that any book I could get my hands on was fair game, and I read quite a lot of books far younger than I really should. Plus I had difficulties with coping with and accepting text with errors, and nobody likes a 5 year old correcting their apostrophes.

Some of this will be less relevant depending on the person's overall profile of difficulties and challenges, but I'd say that being hyperlexic has some (minor) lifelong effects, and isn't only relevant for preschoolers.

@Itisbetter is right in that you can view hyperlexia as an opportunity to connect and possibly to find potential routes in to communication. In my experience hyperlexics are highly, highly motivated to decode text at every opportunity, though I guess other factors affect how much you can make use of that.

cuckoo I'm more articulate and have been pro a differentiating diagnosis - I think more sophistication really. Something like LDA (which is already in use so not that) but something which provides a steer.
I've also started being anti anything which implies no disability/ it's a gift for those of us who can articulate our thinking - that would take us straight back to the little professor stereotype of Asperger's. And then for people who don't see themselves as disabled they can just swerve a diagnosis maybe? Or use divergent? I don't think society is there yet to accommodate different neurotypes etc.

@JarByTheDoor thank you for that reply. Its really interesting. My son can read, he like you said can read anything but it's impossible to know how much he understands. His recent celf 5 scores were incredibly low and those of another language assessment I can't remember the name of. He can read almost anything yet when it comes to communicating that back inc by aac app. He just can't do it/ doesn't understand why he should/ doesnt want to...I don't know why. He has significant needs with receptive and expressive lsnguage. He mainly makes requests with single words. Doesn't understand or seem to understand prepositions, tense etc. I don't know of you've seen my previous post but he's the same with other languages, he knows hundreds of nouns but doesn't use them.

@OneFrenchEgg sorry I wasn't sure on your stance and didn't want to guess at where you put yourself in the dx. I didn't mean anything. I think your spot on. I also agree about thd lda (learning disability and autism?) As not all people have it.

No apology necessary cuckoo i was just answering your question. I think that having levels doesn't work, but something recognising strengths and weaknesses which isn't a six page assessment! I also follow a lot of the 'debate' around language and terms. I liked ND initially as a concept but for me it doesn't work unless separated from autism (incl all autism) - it sort of ignores people you couldn't speak of as a different neurotype (in my thinking, which is new, and learning, and I don't want to offend anyone)

Yep have been reading your previous posts, is really interesting how this same urge/splinter skill/whatever it is turns up in different people with different types of communication difficulty. I guess that's one of the issues with the differing expressions of autism, in that all the other aspects of how ASD expresses differently will affect how one particular aspect of it is experienced, and its characteristics and consequences. But the reason that I wish there was less friction between different groups of interested parties is that some adults with good communication abilities have at least some experience of (in this case) hyperlexia that we can talk about, which might have useful aspects even though it'll be different in many ways from the experiences of people whose ASD is different.

Hyperlexia (if that’s what this is) with language disorder is a totally different thing than without.

I don’t really subscribe to the idea of splinter skills or savant abilities. To my mind what you are looking at is not limited ability with a few extraordinary abilities but rather an extraordinary individual who can only reach over their disability in some facets.

Yes, as I said, all the other aspects of a person and their difficulties will affect the way hyperlexia is expressed and how it affects the person and their trajectory.

But given that the typical trajectory is that reading is something which doesn't happen until 4, 5, 6 or later, usually needs to be explicitly taught, and (at least in the early stages) apparently feels like work, it's interesting to me that there's this very odd and specific thing that occurs in autistic children ranging from those with no obvious language disorder to those with profound difficulties with language and communication — of being fascinated by text, and somehow picking up the ability to decode it far beyond what you'd expect from their other abilities and developmental stages. Reading isn't really a natural human skill, but one which exploits various existing human abilities to allow us to use a technology we've invented, so it's interesting that it would be something that's latched onto by (some) autistic kids with such a range of different difficulties.

It's very rare to find otherwise typically-developing 2 or 3 year olds that can read at all, let alone without instruction or drilling (and many of those who can have other similarities to ASD children, and some may have subtle signs of ASD that don't become obvious until demands increase), yet it's relatively common to find disproportionate reading ability in autistic children with wide-ranging levels of disability.

So I would suspect that underneath, it's not a "totally different thing", but a similar thing which looks very different depending on the context.

I don't really like "splinter skill" either but it was used upthread so I referred back to it.

I think it’s related to IQ particularly those with exceptional shape recognition and sequencing skills. There are usually two or three children that can read reasonably well in reception and more many more who reach adult reading levels by Y2.

By reception I'd been reading fluently for two years (according to evidence from parents, nursery school etc.) — much as I'd like to put that down to some kind of genius IQ, I don't think it's gonna fly 🤣

It’s harder to judge who’s reading in nursery because they don’t do much reading, though thinking about it there was always at least one narrator in the nativity. Why do you think it isn’t intelligence? Can you recite the alphabet backwards without too much effort?

Were you reading adult fiction at two?

I think it was easy enough for them to judge if I was reading when they came across me on the big chair in the reading corner of the nursery, reading a new story book to the other nursery children gathered round me.

Yes, I can recite the alphabet backwards, but that's because my mum thought it would be fun to teach me that when I was little. It did come in useful once at a party when I volunteered to perform it on behalf of another child who'd received it as their challenge/forfeit in a pass the parcel game (pass the parcel was harder back then! or maybe that was just my town…)

At two I don't know, at three I certainly could have but doubt I'd have understood it.

It sounds like you and your mum are very clever.

I didn’t mean nursery wouldn’t notice you could read,I meant it wasn’t obvious to me if other children could read or not at nursery.

I suspect it’s more remarkable if your language is delayed because people don’t expect it.

From what I can make out it's an abnormal developmental trajectory that's qualitatively different from a very bright child being taught to read quite young (the "two or three children that can read reasonably well in reception"), and results not from intelligence but from a particular type of thinking around symbols and patterns and an almost obsessive urge to read. I've come across lots of very clever children and adults, and learning to read without instruction at 2 or 3 is not really a usual thing that results from intelligence, nor is it particularly desirable. I've come across a good few autistic adults who did, though.

I don't actually remember it, you understand — I can only go by what my parents, siblings and relatives say, old school reports, the odd bit of physical evidence like photos… I'm told you could put any text in front of the three-year-old me and I'd happily read it either to myself or aloud, maybe occasionally checking how to correctly say an ambiguously-pronounced word. I doubt I'd have understood very much of adult books and newspapers because I was three but decoding, no problem apparently.

I think it’s less spontaneous learning and more that the learning is so quick effortless (comparatively) and accurate, that it appears spontaneous. People always like to minimise positive difference. Why wouldn’t it be intelligence? Why would we think that?

I was dithering over whether to phrase that as "not through intelligence [alone]", as obviously anyone needs at least some intelligence to learn anything. I didn't go with that because it's awkward discussing the intelligence aspect when you're partially talking about yourself, and you don't want to look like you think you're a genius because of some freaky party trick you had as a kid 🤣 (I have qualms about intelligence as a broad concept and how it tends to be used in these circumstances anyway.) I don't remember describing it as spontaneous but that would fit in some ways, mostly the aspect of the word that implies a lack of external stimulus — of course, the written word has to be around, and being read to will help, but hyperlexics don't need to be taught or encouraged to read.

Even startlingly intelligent children don't tend to develop disproportionately advanced reading skills; those who do often have at least some autism-like characteristics, though these can become less obvious with time.

This is why I suspect there's something going on that's common to the hyperlexic types who are more like me (verbal, lower support needs), and the children with more profound difficulties with communication and interaction who have impressive reading skills.

It’s fine to be who you are, so LD or High IQ, neither is shameful. There’s nothing wrong with having a high IQ.

Even startlingly intelligent children don't tend to develop disproportionately advanced reading skills; those who do often have at least some autism-like characteristics, though these can become less obvious with time. well if they’re already recognised as highly intelligent it won’t be seen as disproportionate even if you read “early”.

This is why I suspect there's something going on that's common to the hyperlexic types who are more like me (verbal, lower support needs), and the children with more profound difficulties with communication and interaction who have impressive reading skills. what’s “going on” is they have deficits you don’t. You have lower support needs because you have less to contend with.

I'm not ashamed of whatever my IQ might be, I just don't want to sound like a twat 🤣

I've met a lot of very smart people with very smart kids. They don't read at 2 or 3. That's pretty much always disproportionate. 4? Yeah, quite a few do, especially if encouraged.

I'm not sure what your last paragraph means exactly… I'm saying that if a significant percentage of children with ASD and lower support needs learn to read extremely young without being taught (and they do, compared to typical kids), and a significant percentage of children with ASD and higher support needs have impressive abilities in reading well beyond what you'd predict given their ability to demonstrate skills in other areas (and they do), then it's kind of suggestive of a link or a commonality of some kind. Reading is an artificial skill, and a very specific one.

I'm not sure, but you seem to be very keen to deny any similarity in any way between people with ASD who have very different needs. Even those people who want to re-divide the diagnosis so that those with profound difficulties receive a separate diagnosis don't tend to argue that there are no common features at all.

I’m not sure why you think that but as I said I don’t agree that early reading is separate from high iq. I understand that non- verbal or severely language disordered is seen as having lower IQ by many but I just dispute that fact. I think the previous criteria and descriptors were more useful.

You wouldn’t sound like a twat, and I think that’s the shame talking.

It's not shame 😂 It's just not true. Hyperlexia doesn't require supreme intelligence, and the highly intelligent are very rarely hyperlexic. I'd look like a right pillock if I tried to claim an autism-related quirk as evidence of my genius.

I too have issues with the assumption that non-speaking and language-disordered is automatically going to mean low IQ, and the confusion around "low functioning", and disagree with the categorisation of autistic people primarily by IQ anyway (though of course any learning disability should be recognised). I don't think IQ tests are that meaningful or accurate for a lot of autistic people. For some it would be like IQ-testing a Cantonese speaker with an English test, and when people's brains work very differently to the average, the tests are going to be measuring the wrong things in the wrong way. I understand the need for some cognitive testing in some circumstances but IQ is a blunt and not always very appropriate instrument. And often, it's things other than IQ (or combined with) that have the biggest impact. I've met people with a learning disability who manage life pretty well with the right supports.