Quick summary of latest research on autism

[amberlight]

www.springer.com/psychology/child+%26+school+psychology/journal/10803

This research journal is still free to access until Dec 31st.

I've been working through some of the research from the last few months and trying to summarise what the articles say. Well worth tracking down the original articles to check that you agree with my summary, since I'm not a scientist. I can point people to the right ones if needed.

(all generalising of course since there will be exceptions to each rule. We're all individuals...but many things seem to be true of most of us. I've tried to put in words like "usually" and "often", but may have missed some).

1. Autistic people with big sensory problems also usually have big anxiety problems because of the same missing brain wiring bit. Most people's brains have an off switch for anxiety and sensory pain. Ours is missing the off switch, it seems.

1. There's probably no meaningful difference between autism and asperger syndrome. It's one disability, though half have a milder version of it. (Of the (say) 750,000 people in the country with it, about half milder, 40% moderate, 10% are severe). [Mild does not mean "no need for assistance/life is easy" - it's just the way it's scored]

1. The AQ test.... A score above 42/50 with the other diagnostic things generally means 'severe autism'. [People traditionally mistook 'ability to speak' or "high IQ" for 'mild'. And they mistook "can't speak and low IQ" as "autism". They're other disabilities that can occur with autism - people with autism can be blind or deaf or wheelchair users or have arthritis or dyspraxia or dyslexia or be face blind or

any other disability/combination that adds to the difficulties they may have.]

1. IQ and common sense are also usually completely unrelated for us. Our IQ or other specialised skills are usually fairly useless to us, even if IQ is hugely high: we can't use it as a tool to achieve things with, without external guidance from others or without good social skills to persuade others to work with us or use our skills: We normally have to work in a caring team to achieve good life outcomes.

1. The main thing that makes a difference to our quality of life outcomes is our social skills, they've discovered. Not IQ . Not specialist skills. Not language. If we can't master social skills fairly well at some point in life, generally no other talent enables us to succeed. This is very different to most other people where IQ is very important indeed. Their social skills allow them to use that IQ.

1. Our co-ordination is often fairly awful because of general brain development delays. So we may drop things and fall off things and may be generally pretty bad at practical life skills, and get into big danger fairly fast if we're not thinking clearly

1. We can usually see big main emotions like happy, sad, scared, if people are really clear, with big expressions on their faces. We can't usually see many of the other emotions. We mostly live in a world where things have to be defined by the ones we see. And the bit in our brain that controls 'who's who and are they are an enemy/acquaintance/friend/best friends in the whole world" often isn't wired up properly either. So we may tend to either fear everyone... or love everyone.

1. If we're laughed at (rather than laughed with), our brain auto-panics and cannot stop itself. This has fascinated the scientists, because they thought it was some neuroticism but it isn't...it's a standard feature of autism and is far, far more severe than in any other disability or even the mental health conditions. (Probably totally overloads the tiny and badly wired social-centre in our brains by asking it to calculate why laughing suddenly doesn't equal friendship and fun?and whether people laughing are going to be scary predators).

1. Gender identity differences are ten times more likely for people on the autism spectrum

10. (In schools in one large study, only half the pupils from years 6-8 have even heard of autism. Many think you can catch it from people. No wonder so many children on the autism spectrum end up alone...)

11. We can sort of understand irony...we can guess that someone is saying something untrue. But we don't often realise that it's also funny. (We often can't understand more than one concept at a time)

12. If you show us a picture of a room and say "there was a burglary here earlier", most people would think there was a link between that statement and the picture...and would look for evidence of burglary. We mostly don't. We look for things in the room that are interesting to us. If people want us to look for evidence of burglary, they have to say so. Then we're often ten times better at spotting the detail than they are. But our memory for events we've witnessed is as good as that of other people.

13. We can often read fast, but our comprehension skills may be terrible, unless it's facts and/or things that are very easy to visualise. This isn't true for all on the autism spectrum - some have extraordinary word comprehension abilities and recall.

14.We usually can't generalise from one situation to the next. Even the slightest difference between situation A and situation B makes it a whole new situation for us. No previous knowledge applies.

15. We often don't really understand time very well at all. We tend to think of "a moment ago...now...very soon". It explains a lot about why we may need really clear predictable visual timetables etc, otherwise we get 'lost in time'. And why a few days can feel like a whole lifetime and get us panicked for what seems like no reason. A few days may feel like forever, to us.

As I say, each person is different, so not all of these things will apply to each one of us, but science is uncovering so many really interesting things about many of us.

thanks

Thanks for sharing Amber, that is really interesting reading.

Bllimey, I've just found the price for that journal - nearly 2 grand! Well, there goes that idea.
Why do they make it that expensive when so few families or volunteers have that money, I wonder?

This is really interestng, thank you to all of you, esp amber. My ds is no where near the level of some of yours, (minimal speech), but it is really fascinating to hear how over exagerating helps,

ds signs and will often sign to tell me someone is 'sad', (or occasionally 'happy'). he has also started to stroke his dad when he (dh) falls over, (which happens a lot) I think he is starting to 'get' emotions because BSL/SSE is so visual and emphasis, esp of emotion, is easy to see and recognise.
from face and body.

Makes sense, signandsing. I was reading another article recently that said many of us can manage empathy etc just fine if we can see/hear the problem in the first place.

I guess the brain's "empahty muscles" aren't ever exercised in the same way as other people's are. We often can't see the signals of distress in faces, we often can't hear distressed tone in voices...so it's like someone trying to be empathetic to a cardboard cutout of a person with a blank expression on their face. "Guess the emotion" is how we often spend our lives...

I have to tell dh how I'm feeling as there is no way he can see it, or hear it in my voice. His brain literally can't. But if I tell him, he's fantastic at being supportive.

Brains can be gradually rewired to adapt to stuff. Maybe never to as good a standard as people with these things built in from birth, but we can often learn/adapt over years and decades.

Thanks, I think i get fed up with people saying, oh he shouldn't be able to do that
if he's got ASD.... (cue implication does he really have it from some 'friends/family')

your descriptions and analysis are always really useful to help me see from his point of view, a glimpse into his world, which is only fair, as he is expected to live in ours!

signandsing..... this gets on my nerves too. IT IS A VERY BROAD SPECTRUM.

I have a friend who is a grown man, a GP actually who has a wife and young family. He has so-called mild autism. No, he cannot be compared to people with severe disability but, he's on it, all the same.

My ten yr old son can hold an articulate conversation with you, on his given subject and others too, if he wishes. He has all the "usual" social difficulties though and is utterly friendless. He is uber repetative and has all the ticks, flicks and odd gait etc that highlight his condition.

I say again.....IT IS A VERY BROAD SPECTRUM and it's the "not too bad" ones that get little assistance slip through the net.

Wendi ds sounds the same as yours.. You know I have half wondered if it would be nice for all our friendless dc's to have a thread on here.. Where they can all chat together and we can all keep an eye on them.

Great idea Arsenic!. My ds (10) sounds really like your ds and Wendi's too. He has no friends and is really about it. Has a new laptop so would love to 'chat' with other dc's who would maybe understand how he feels.

Shall we pop up a new thread about it and sort out some saftey rules?

Yes that would be good. Presumably I give ds a new user name?

I was thinking to link ds in with my name... Something like arsenicsDS .. That way we can grab any parent if we need to :)

Sounds good. My ds is VERY young though. Still in Cars the movie (loves all the numbers) and Pac-man games.

Would be good if we could set up the safety side.