Here are some suggested organisations that offer expert advice on SN.
Quick summary of latest research on autism(39 Posts)
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.
2. 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]
3. 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.]
4. 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.
5. 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.
6. 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
7. 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.
8. 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).
9. 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.
Fantastic amber, I love the way you put things, it is really helping me to understand my newly diagnosed son who has ASD.
I read a lot of the articles when you originally posted your link. But didn't organise it very well in my head. Thank you very very much for that lovely summary.
Still not 100% sure that I've got most of them right, but thanks. I'm thinking about taking out a subscription to that journal when it goes back to being paid-for, as it's so handy.
Thanks Amber, i am confused as to where dd2 is on the spectrum as it seems she has a high IQ but poor language/speech. Both my dd's have sensory issues and suffer from anxiety (dd1 more so).
Its shocking that other children think they can catch Autism, there is a parent at the dd's school who seems to think dd2's ASD has rubbed off on her DS .
Thank you Amberlight. That's a really helful post
Marne, it's anyone's guess re your dd, probably, until 2013 when the results are in.
If DSM V's recommendations go ahead with their current thinking, then severe sensory difficulties will add to the severity score of autism. If they split it away from autism and make it a separate category, then we're back to two main things to work out how severe autism is -
1. How severely does a child struggle to interpret people's social communication and communicate social signalling and wording correctly, so they can make and enjoy good relationships...(In adults, if they've discovered ways round the difficulty, then the question becomes 'how much effort does it take for the adult to achieve this and how exhausted do they get with that effort?)
2. Also how severely does a child need routine/predictability in their lives, and what happens if something unexpected occurs? With quiet children, this is often 'shutdown', or quiet panic, or maybe eating disorder, OCD, and other non-violent things. With more extravert children it might be meltdowns etc. The mistake originally was to say "well if the child is quietly sitting in a corner when something unexpected occurs, they can't have autism as severely as the child who is wrecking the room". Putting stress monitoring stuff on the children shows a very different result.
They reckon the speech/language stuff will be separated out so that it's given proper thought and therapies etc as a separate part of disability. That's controversial because some scientists still think language difficulties cause some sorts of autistic behaviour. And all of us on the autism spectrum use social language 'the wrong way' at times/nearly all the time, which makes it even harder to know how to define what a difficult language problem is.
I know many people with some degree of autism, a low IQ and not a lot of language, but whose ability to use smile and gesture and signing etc means they still are very 'instantly lovable' and have a lot of friends and do pretty well in life for happiness and outcomes in the end.
And I know many people on the autism spectrum with many many words and a high IQ, but who p*** people off all the time because they use too many words/the wrong social ones for the occasion etc, and end up friendless, jobless and in a hell of a state even as adults.
And there's plenty between those points too/with different combinations of tricky difficulty.
That's not any sort of answer, but it goes to show how complicated the world of autism spectrum disorders is right now.
I can identify ds with just about everything you have posted!
( and I printed off some of the social / education success research.. Because I want to push my point with school that although ds achieves averagely at school in most areas.. He needs extra help with the social stuff.. That is effecting his potential success!)
ds has a high IQ.. However he struggles so much with the social, sensory and anxiety stuff that trying to figure out the world around him pulls him back all the time.
It seems ( from an onlookers. Perception) that it is akin to trying to drive in a new city with a gps cutting in and out and the children yelling in the car! You don't drive as well as you would on a familiar route with things quiet.
Again ds has no common sense skills at all.. However.. He is the most logical person I know! Yet he just doesn't connect the commonsense bit with the logic bit.
Because he has a high IQ and because he is verbal it makes it harder for people to see he actually needs a lot of help and support... It would almost be easier for him to look more severe.
Yet his issues with dyslexia, sensory integration, implusivity, asd, attention, anxiety. Although all mildish on their own.. Together cause him to be really quite disabled... Particularly in the wrong environment.
So after waffling.. I would totally agree with your post...
Amberlight: as ever, brilliant!
Thank you for that. I can see a lot of my DS in all of that.
My son was said to have mild autism.....a term I never understood and which put him into a "not that bad, needs minimal help" category. It even caused my husband to misbelieve the diagnosis, believing instead that his condition was caused by my style of mothering. We are now divorced. He left 3 weeks after my son#s diagnosis when he was aged 4.
My son is very verbal so people often think him "normal". His mannerisms (when not highly anxious) means that he can blend in. He's recently been diagnosed with OCD and is receiving medication for that so now, his hand wringing and ticks and flicks mean that he is very "obvious". I feel he has the advantage of a reasonably good IQ, excellent memory for the stuff he WANTS to remember and was doing quite well at school until the OCD took over. BUT and it's a BIG but, will he have the ability to form social friendships (hasn't so far) or even a relationship later in life? Hold down a job or some description? At the moment, I so doubt it and it makes me so, so upset.
ArsenicCupcake.....I think I've read your postings before and have thought there are big similarities. I feel my son has so often slipped through the net and only now, has i all become too much.
Thanks so much for this thread. It all makes perfect sense and makes me realise that though far flung, there are other kids like mine.
Wendi you probably have read my witterings.. I tend to do it quite a bit.
There has to be so many children similar to ours.. Slipping through the net.. Deemed mild end.. But there is nothing mild about the combination of problems..
I don't have any future thoughts about ds.. I try not to at the moment.. But of course it is always at the back of my mind.. And is why I push and push and work so hard with him.. Just so that he will be able to live a life when I'm no longer here... I just want him to be able to function well enough.
I do hope that the the DMV does take into account the other aspects with regard to naming severity. Because lots of bits get ignored at present.
Wendi, urk re what happened with dh
Just from what I read and my own experiences, The social friendship thing can take years and years for us to get even half way right. And it's very very important.
I truly had no clue at all until I was in my late teens/early 20s, and then I could only handle conversations with 1-2 people at most at a time, so social events were just about impossible for me. I was the silent child at school with the major stims and utter obsessions (what other child spends two solid years of their life at early secondary school creating statistics on weather and horse breeds, 18 hrs a day if allowed to?). School used to hit me if I stimmed, and the pain was so bad (sensory sensitivities)... so I learned to keep them invisible and sit real still.
(Our brains apparently re-uses the maths-rules bit of the brain to talk with people, instead of the people-centre bit of the brain. It's why we need to know the rules for where we are and what will happen, they think, and why our natural social skills don't work - it can't get to that bit of the brain.)
I spent another 25 yrs improving basic friendship skills, so very very gradually. Still learning, still getting it wrong sometimes.
Was it all worth it? Yup, but I could have done with some assistance, because there were too many times when I just wanted it to stop. Sometimes there still are, but now it's because I take on too much without thinking it through, and try too hard to communicate without the skills to handle big group discussions properly.
Even on something like this thread I've no clue who people are, and can't hold onto what more than one person has said at a time. If I go back and re-read, the info from the other person falls out of my brain instead. It's literally "one at a time!". (tip - I keep praying that no-one realises and that I don't mess up too badly each time). And I often can't remember who already knows what or who needs to know what. It's why I never work alone on things.
The 'lucky things' were having a very very structured school (primary and secondary), learning about computers so I could make a living doing something I can do, and finding the books on human behaviour so I could interpret the stuff a bit. And having no memory for "this is too hard", so trying and trying and trying to get things right.
I now have a social care team who are very practical with me and have learned to order me about if I'm being silly (which I need).
(The hardest and maybe scariest work is getting up every morning with a brain that can't remember who's a friend...and re-teaching it every day, (mine is especially rude about this stuff as I'm also faceblind). I have a list of who my friends are and a bit about them, so I can work through it and remind myself. I care very much about them, but can't find the info on them without re-training my brain each day, if that makes sense...)
What would have helped me, if I'd been diagnosed earlier? Social skills training (specialised for autism), and really good anti-bullying stuff. And a society that understands difference and disability and manages to think "OK, how do we support this family and this child, because this is a child with much to offer the world if we can help them do so" rather than "how much money can we save this week by not bothering to help them at all?"
Amberlight and Arsenic....I wish you lived near me and could have come see my MP a couple of months ago. I wanted to get across to him that there are kids who need help who are deemed "not bad enough" and who are being left.
Amberlight....I know HOW important the social skills training is but how to access it?!!
I can't be his friend. I'm his mum. I feel that his little world is getting smaller and smaller and then, when he's older he'll not have a clue HOW to do it!
That's the million-dollar question (to use a phrase). Around here, some local groups are setting up their own social skills training, because there's so little out there. Worth asking the local autism charities if they know of some/are prepared to consider setting something up.
Recent research showed that parents can do a heck of a lot in the very early years by using really big over-exaggerated gestures and expressions and very clear instructions on what to say/do and what not to say/do. The more input we get at the start with this stuff, the faster we learn to compensate for what our brains can't do naturally.
For me, the scariest people are the ones whose faces barely change expression. I can see really big facial expressions but otherwise it's like sitting amongst those shop mannequins - people just appear totally expressionless. It makes it so hard to guess what they may be thinking and guess what to say or do, unless they use clear words or those big expressions. Bit like being nearly-blind in a way.
Getting children to find friends 'their way' is also very important. Generalising throughout this next bit... we play alongside people so we don't accidentally have to cope with eye contact, for example. It can look like we're ignoring the other children when we're not. But the other children may need to be taught that. And others need to be taught to be really clear about saying yes/no/stop/'I'm feeling sad and need you to do X to help me feel better' etc. Others are so used to using 95% non-verbal stuff to communicate meaning (eye contact, voice tone, body position, face expression...), but we are blind/deaf to just about all of it.
And other children need to realise that we're having to use the 'maths-rules' bit of our brain to enable us to be friends with them, so we may need to ask about rules for what to say or do.
Plus the people-bit in our brain is used as a data zone for info on our stuff....so if they go moving our stuff or throwing it about, it feels to us like they're throwing our own baby about. Imagine if a stranger came up to you in the street, picked your baby out of the pram and started throwing it to someone else - you'd go bezerk. Watch what happens if someone does that to our things. It's often the same.
It's part of why we panic if they touch our things in a rough way or move them somewhere unexpected. Friends need to learn to ask if it's ok to touch our things, and show care for them around us. It's not selfishness from us, it's just the way our brain is pre-wiredand having to use the 'wrong' bits.
We also have to cope with the sensory input around us. A quiet room with one person is a heck of a lot easier than a room filled with others, because of the deafening noise and chaos and pain from being jostled in a crowd. Friendships often need to start somewhere quiet, focusing on a shared hobby.
We're normally really great friends - loyal, honest, constant, trustworthy...but people need to understand those few things before we make sense to them. I see my friends in ones rather than groups, if I can, somewhere quiet and familiar. And I learned to listen and take turns...over many years.
We get there, if people are prepared to either wait a good long while or prepared to help us find quicker answers.
Amber, thank you so much for doing that summary and for the link.
I would really like to read the first study you summarised:
"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."
Do you know which study it was on the site?
I have tried searching (still free access today) but havent been able to find it yet.
That one's called
"Anxiety Disorders and Sensory Over-Responsivity in Children with Autism Spectrum Disorders: Is There a Causal Relationship?"
Shulamite A. Green and Ayelet Ben-Sasson
Should let you search for it that way, both through that journal and other people's thoughts on the paper.
It links with research on brain areas and which does what - will try to find that too.
Wendi.. What we do and have done for ages is to completely over exagerate facial expressions and body language and if that's still not clear to ds2 we just tell him straight!
Sometimes it may mean saying.. " look at my body/ face .. This means x,y or z"
with social learning as such I actually have quite a large family.. And those with some very close friends and their children .. We all over exagerate and prompt for ds when needed.. So that he doesn't just learn with me.
Ds1 basically cares for ds2 when they go to their dads.. Telling him, helping him etc.. Because they don't regard any of ds2 issues at all.. And are the least social people with the least obvious facial expressions going! ( Im very very certain that there is a couple of undx cases of asd going on there).
And ds2 really struggleswith it.
I think that when ds is older he will naturally choose people who will understand and help him out.. Rather than being forced in to trying to cope socially at school with a huge group of people and sensory stuff going on.
Although ds1 enjoys his own social life.. He naturally just tells his friends ( who are all lovely teenage lads).. About ds2s issues ( including the face blindness etc).. They now all keep an eye out for ds2 when at school.. And if ds1 isn't about they have taken it on to learn how to calm ds2 down, and help him out! They have also involved their own younger siblings in their own efforts!
Ot shouldn't be down to ds1 at school to do this.. However he and his friends have been so lovely!.. One friend sat with ds2 and rocked with him when he was totally overwhelmed at school and ds1 was having a right go at the silly idiots who had got ds2 into that state!
But this is what we are fighting for at school at the moment.. Trained adults and peer mentors to help ds2 .. Rather than the small group of 15/16 year olds who see the need ... Understand and do something amaising!
Thanks very much, I was able to read it just before free access ended.
Well, when I did the AQ test thing I got 41. But I honestly would not say I have close to severe autism. But this is just myself.
I can relate very much to the shutdown and quiet panic scenario with myself. Unfortunately this leads people to presume everything is fine.
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