"The Autie Advantage" - 'brains different not worse'

[amberlight]

In this week's New Scientist magazine (1 May 2010) available online and in most bigger newsagents) there is a three page article about the latest on autism and our brains.

It shows that most people with autism have strengths as well as weaknesses. David Wolman, who writes the article, says that time after time research has shown that autistic children or adults have very strong skills in some things, but each time the researchers have focused only on the negative side of those skills. One quote I love in it is this:

"The flip side of an inability to 'see the wood for the trees' is being very, very good at seeing trees". In other words, autistic people may be bad at some things, but only because we're perhaps extremely good at something else and the brain is processing that instead of the other stuff.

Things we are generally very good at, they found from the research:

Memory

Musical pitch recognition

Drawing and/or mentally rotating/assembling 3-D shapes and designs

Rational rather than emotional decision-making

Attention to detail

Things we are generally not so good at:

Social skills

Social imagination & understanding what someone else is thinking

Planning complex sequences of events

Seeing the broader strategy for things

Using language in a skilled way to get key things for ourselves

I think the article is available online to the public next week (they like to keep it to subscribers only for a week, from memory)

All of this is a generalisation, of course, since each person is an individual. Some will have stronger skills in many things, some will struggle to show a strong skill in anything at all. But it's very interesting that science is now recognising core autism as a genuine difference with some definite advantages over other people, rather than just a deficit that has to be gotten rid of. I think it shows that the challenge is getting society to recognise those differences and possible strengths, and make it possible for us to live good and productive lives in ways we can handle.

Note that the article looks at 'pure' autism (those with profound social skills and need-for-routine issues) rather than at wider linked disability issues of low IQ, self-injury, ADHD, ODD, epilepsy or other things that may make quality of life for us or our carers much worse.

It sounds fascinating but I've never heard of 'pure' autism as a concept - Does that mean that according to this theory, language and learning difficulties are considered 'bolt ons' to autism rather than difficulties that form part of the dx ? It reminds me of the discussion we had on another thread about whether 'autism' is a real thing or not.

It makes sense to me amberlight, I've always felt that the only issues my DS has are linked to his Asperger's, he has no other comorbids. My OH ticks many Aspieboxes, but as a very high-level research academic that has mostly worked to his advantage.

"I think it shows that the challenge is getting society to recognise those differences and possible strengths, and make it possible for us to live good and productive lives in ways we can handle."

That's what we're working on, with some real success.

Yup, in the DSM V stuff that's due for final publication by 2013, the experts are saying that they want to redefine autism as basically two things - (forgive me putting them into my sort of English)

Social cluelessness/clumsiness

Huge need for routine and predictability and focus on detail

It mentions sensory behaviours as being common as well, so it's sort of two and a half things.

Things like learning difficulties, speech delay/absence, etc are now categorised separately.

The idea will be that each child will be assessed for all sorts of things and given a proper total diagnosis of e.g. moderate autism with moderate speech delay and high sensory issues, or profound autism with low IQ but no sensory issues, etc etc. Then they tailor proper support around it. Well, in theory.

There will be people who have 'pure autism' - the two (and maybe a half) things listed above.

It's a whole new way of looking at autism itself, as something that has benefits as well as disadvantages, but also allowing support teams and therapists and doctors to focus on other really problematic but it seems separate things, like low IQ or extreme behavioural issues etc. Very different.

ooo...and...the article says that it's no wonder so many people with autism were being given a very low IQ score (70% of us) - they were using the wrong test for us. When given the correct test, most people move out of "low IQ", because it measures our core abilities instead of our social knowledge. Interesting.

One of the issues that he's faced is that it's truly a hidden disability for him. A lot of teachers found it difficult to cope with understanding that he doesn't have dyspraxia, or other familiar comorbids and that his learning needs can often be met by very simple changes and adaptations that are immensely effective.
Perhaps a more specific focus on individual's needs will help with obtaining appropriate support and awareness. Maybe it will just be another fine mess. Let's hope it will be the former.

It does not really surprise that the issues are separated this way but it does seem (to me) to cast doubt on whether a core autism exists at all. As someone said (Lingle?) when you peel back the layers, there's nothing there. Individual assessments are needed that I definitely agree with.

Cyber I don't know a single professional now who believes in a core autism. Coming at this from the cancer field (time with macmillan) I don't see that as odd; after all cancer is just many, many separate dioseases going under one title: autism is the same. IMO.

I am not even convinced ds1 and ds3 have the same type- ds1's is like me, my Mum, Grandad..... same issues as a core. Ds3 isn't, he is the classic kid with SN in more obvious ways than he has ASD; it takes a specilaist to notie the ASD stuff.

I don't see it as odd either but why keep using the same 'label' ? Cancers have many causes/outcomes but unless it's a cancerous cell, it's not cancer ? Well I'm not a scientist...

Cyber becuase it's a disorder or syndrome it's labelled according to rpesenting symptomology. And also- we just don't know what most asd is nyet. We will, my Prof reckons within about a decade, but certainly not yet. Plus there are big support issues with breaking it down- who gets access to the NAS, etc? It will tkae the system a long time to adjust and we don't have the guidelines yet. I think ds3's was triggerd by a fall and ds1's by birth injury, maybe some vaccine damage in there with ds3 (infant paracetamol damage? latest ressearch seems to suggest it) and no doubt a genetic basis and they have casein intolerances as well, at a severe enough level they were FTT until diagnosed. How on earth you pick that apart I have no idea, hence the over-riding ASD label.

But if 'autism' can be triggered by a fall then that's taking it to another level again - using it as an all purpose description for a condition that is not fully functioning and NT. A friend's child has brain damage due to meningtitis but does that mean she has also regressed to autism ? I don't find any of this a very useful way to look at real life situations. But that's just my opinion, I am not expecting to change the world. I do think that DS1 does not fit the expectations of the NAS as although he is not severe, he is not mainstream material either. Like a lot of people, I am wondering if I should or should not renew NAS membership.

It would mean she had autism if it met the DSM criteria: ds3 has all teh spech delay, regression, other criteria- he has Autism as it stands in definition. The fall occurred before and we suspect it triggred the ASD but do not know.

Autism isn't a medical illness or disease: it is a name for a group of presneting symtptoms and no more. If A+B stacks up with onset before 3 then you ahve autism: aetiology, at thi moment is not considered unless the symptomology can be attributed to something such as childhood schizophrenia.

I do think it's a useful term now: it's all we have, we can't break down the aetiologies yet. The NAS for me has been of immense help and ds3's autism presentation is clear but we just don't know for sure what triggred it. What would we break down ASD into otherwise? We just haven't a reliable guide yet. When we do it will make sense to use oit of course.

Ds is a big systemiser and always tries to put things into patterns. He's only 5 but I can see a scientific brain developing. He also has an incredible memory. I often say his brain works in a different way to my other two children, but in a way that shows potential for great insights into things

It's hard to unify such diverse views but again this is only my opinion but I think the term autism could just as well be scrapped, and children looked at on an individual basis - after all no one notices that Freud's ideas have disappeared from the landscape, though in their day, they were as influential and powerful as the autism thing is today.

I nopticed Cyber (but tehn I did Psych as part of my degree LOL so I would )

I think mass labels give power: we need that sheer vast size of population / cost / etc in order to get fudning and attention for the research that may actually give us enough clues. A politician might listen to 1% of kids have a dx of ASD (depending on which stats you use): they sure as hell won't listen to far, far smaller fugures by aetiology.

And large charities such as the NAS have the power to lobby and change things too. The work they do is hugely beneficial at all vlels- post dx support, residentialc are, into work schemes.

It's not ideal but I think it is a very sensible means to an end

What I like, I have to say, is some of the discussions around the whole diagnostic process which are saying that the very mild end of the autism spectrum in which there is no effect on daily life and no need for help or services will most probably no longer qualify for a diagnostic label.

Apparently a few diagnostic people were applying the criteria too liberally for adults and forgetting that there has to be an effect on life for it to be a disability diagnosis.

Anyone saying "Hey, I don't need any help or support and it has no effect on my life! Never has done, never will!" will be declaring themselves to be absolutely bloomin' 'normal'.

There is also a strong push not to label 'high functioning' as 'mild' without giving any consideration to the levels of difficulty the person actually has. A much more careful analysis will be needed.

I'm just continuing to hope that much more clarity will come out of all of this, so that people who really need services and support will get that, and fast.

Qyute Riv

and even ds1- well he's a gift to me natiurally, but HFA he mioght be but if he can't cope with a 15 minute lunchbreak then how is that a gift?

it's not.

It says "most" people on the autism spectrum, and is very specific about that. It doesn't say "all" and in no way means "all".

From what the DSM V is saying, things like incontinence and lack of speech can occur with autism but are not autism. They are really difficult things and deserve a huge amount of extra help.

But at present nearly 100% of autistic people are 'written off'. What it's trying to do is help some of them. I don't think that's a bad aim.

But I thought even Aspergers required some differences in use of speech to be dxd ? I would define lack of speech as being lack of speech within NT norms. DS1 has some speech but not enough to be considered fully verbal by anyone's standards, and certainly not by NAS standards. I completely accept that many ASD people have reasonable speech - I hope DS1 will improve - but getting too far away from the idea that autism is impaired sppech/communication in itself is taking 'autism' towards a definition that would have little purpose for him.

Although the "Autistic? What's his super-power then?", attitude is annoying and unhelpful I'd rather have that nonsense than people just assuming my son is useless. An in depth understanding of the real strengths in various differences might even get rid of the old Rain Man super-powers stuff. It's quite possible to have gifts and still have a rotten life with or without autism. People's struggles should be acknowledged but I think at the moment a small swing towards a more positive view of autism would be a good thing.

The DSM V consultation process is still running. I hope people consider getting hold of the key people on it and make those points to them.

The current suggested definitions indicate that it's social communication that is affected, not speech per se. They see those things as different. So, people with higher IQs may use language in complex yet utterly irrelevant or positively dangerous ways, because the social context of the language is missing.

And it's more than using words - it's about the whole of communication - eye contact, facial expressions, gesture, tone of voice, positioning of body in relation to others, the ability to process all that information at lightning speed and respond to it in equally lightning speed. That's 90% of what others do to communicate with those around them. I can't do any of it in any meaningful way. Those are the deficits in autism according to the latest thinking.

Being unable to speak in words, but yet able to use gesture, eye contact, face expressions etc to communicate with others in sociable ways and use those other elements to get others to do what you need would not be the same as autism.

There are very 'grey areas' between the two, of course. Some autistic people definitely can't speak. But many people who can't speak aren't autistic and that's why they think it's a different area of disability.

I'm not an 'Expert' or 'Professional', so this is only me relating what I read from the point of view of the work I do and from the point of view of someone on the autism spectrum.

All interesting stuff, though.

Like I often say, I value absolutely everyone at all points on the spectrum - high low or medium functioning, and with any other disabilities. I fight long and hard for proper services and proper inclusion and proper funding according to the level of need, as do many others. But we all desperately need society to see that sometimes autism is not just a disaster. Science noting this to be true in many cases doesn't belittle or deny those for whom it is a huge deficit with no sign of something positive. It's no different, I think, to researchers saying that most people who are registered Blind can actually do some useful contributing to society. As far as the researchers are concerned, it's simply a fact.

I agree Amber as long as it's not used as an excuse to insist all people can do something in terms of work etc- becuase many cannot. Most can, but a great many fall through on such things as just always fallin g foul of office politics and being the first choice out etc- have seen that happen in an endless loop for people. As someone I know put it- he said my work was great but I was a cat eprson and they were dog people.

And yes youc an get a DX of AS without any speech issues: DS1's speech was assessed pre dx as more than a decade ahead of his age (they did say there were potential abnormalities - they emant spd- but didn't allocate a SLT to identify)

But as Amber says there have to be signifdicant language issues: ds1 has a monotone style of delviery, sometimes no eye contact, minimal body languaghe, can go for days making grunts and squeaks (guinea pig fixation). He also has a processing delay which wasn't noted at dx but is signifcant for school now-n he can do it, if he is given extra time: teachers want to get through the work and clean the board before he ahs a chance so he doesn't get a chance to show what he can do until someone gives him the work opn apper and oh yes he can. Funny that LOL

Why don't they just call it disordered communication? Then parents wouldn't spend their time trying to figure out what autism "is" and whether their child has "it" only to get there and find there is no "there" there.

SanctiMA, I agree with you. If it's used as an excuse to deny access to benefits then that would be very wrong. There again, the current system denies autistic people jobs AND benefits in a huge percentage of cases, so we already have a system that is appalling for families and appalling for people on just about all parts of the Spectrum.

Sorting it out is something that desperately needs to happen, and I speak as someone who's trying to fight for help for her own family right at the moment.