Possible DNA link found - The Independant today
Posted by
damo73
on 10th June 2010
at 11:56
Hello Nicky,
Totlly agree about media portrayal and this is only one problem of this kind of research (how it is disseminated by the media and into public consciousness). The current and growing trend of linking autism to psychopathic violence being the most dangerous (see other strand on recent killings etc.).
I'd like to point out that this kind of genetic research into 'causes' does little for understanding how that effects lived experience or make lives easier (in fact takes funding away from research that would - instead of spending millions on genetic research, one could put some of that into researching the 'autistic voice' or the 'parent voice' on how to improve life chances - or actually 'do something' in praxis!). This research only tells us a likliehood of some genetic patterns being implicated in autism - we knew this already. If the research is eventually able to pinpoint genetic sequences (which I very much doubt given the wide variety of effects and sub-phenotypes along the spectrum) - this will tell us nothing other than who has it and who doesn't. The most likely use of this research when put to the public, is likely to be genetic screening for potential terminations (hence the 'most severe mental illness' quotes). Pinpointing genes will tell us little of how they are fully manifested in an individual and how they interact with the wider world (again, other than what we already know).
These debates are being covered at the IOE conference at the end of the month and I think they may become quite heated ones.
Damian - Community Champion
Posted by
michaelz
on 10th June 2010
at 12:58
Posted by
michaelz
on 10th June 2010
at 13:39
left click on the little boxes above for exciting surprise!
not sure why i couldn't get the pic to display - presumably HTML-incompetence.
story is also in telegraph :
Posted by
michaelz
on 10th June 2010
at 16:40
Posted by
damo73
on 11th June 2010
at 11:14
Hello Nicky,
This argument came up on the women's hour on BBC4 this morning (see other strand) - this topic was brought up, despite the guest speaker not really wanting to talk about it (I think?). Had little to do with the topic of the question, yet this kind of research has that 'sensational' factor for the wider radio audience. Anyway...
I see your point about early diagnosis and support - yet to take this point further? I don't think that early infants (unless infantile autism is present) need more additional support than other babies - therefore, the support and help that 'early diagnosis' will be for the families benefit. If it becomes possible for DNA testing (if it can be it will be fairly soon, if not, they will never be able to etc.) that truly identifies autism - than it will be possible to test this with a fetus - thus - no need to wait - therefore potential parents will be faced with this decision, without any wider cultural knowledge of what autism is (or a misguided 'tragic' perception) - thus - increase in terminations.
For me - the logic is quite simple - this does nothing for autistic people - it may help parents in the way you suggest, yet only if they have knowledge and support set up already, which I think is unlikely to happen in most cases.
This type of research however, will never quite be able to pinpoint exactly one pattern of genes for autism (although perhaps a sub-type?) - yet, it promotes the idea that there is one to be found - creating a notional 'race' category. This 'race' could be seen as 'deficient' and screened out. Looks a lot like eugenics being dressed up as 'positive research' to me!
If this happens we would lose the magic of people like my son, the oddball logic of people like me etc. + the lives of those who already exist and have a diagnosis will not be improved. As I have said before, I'd prefer a redistribution of research funding - scientists will do this stuff anyway - yet other projects are far more important.
Interestingly, many autistic people are refusing to give samples of their DNA for this kind of research - as a rebellion against it. This is all very political stuff.
Damian - Community Champion
Posted by
bumblebee
on 11th June 2010
at 15:07
Hi all,
Not sure I am as 'overjoyed' as the papers seem to think parents should or will be...I feel a bit 'grrr' about it really...what about the kids and adults who are already diagnosed? why is so much time, money and attention going on this, when services for people already diagnosed with autism are like something out of the dark ages? I can imagine that there are people who are scared that they could have an autistic child and would welcome this ''breakthrough'' as autism has been portrayed incorrectly and negatively for far too long... However, we are where we are and how about research into educating people with autism? Now thats a thought eh?!
Also didnt we already know its genetically linked? Cant they just look at a load of statistics for that? E.G... That family has x number of people diagnosed with an ASC etc....? Probably far too obvious! Damian, I dont blame people with autism not wanting to get involved...it just makes me think of cloning.....
...sorry, rant over!
Claire - Community Champion
Posted by
Leanne
on 11th June 2010
at 15:56
Hi,
I have attempted a couple of posts about this but changed my mind.. anyway I am pleased that they are doing this research.
I think it is crucial to know what causes autism.. I love my boys dearly but would I really choose this for them - no. Life is hard anyway, throw in to that the complication of speech difficulties and learning delays and the chance that my youngest may not be able to lead an independant life also the fact that my eldest will potentially face a life of being continually exploited. Autism does not define who my boys are it just makes their lives harder.. for someone like me who believes that a combination of factors causes autism I think it is vital to know what you are dealing with so that informed choices can be made.
If it is proven ,for example ,that certain children due to genetic differences are more sensitive to vaccine damage then I ,for one ,would want to know and be informed.
I don't believe that if this research wasn't happening then more money would be available.. it would just be re directed elsewhere into other research.
Leanne - Community Champion
Posted by
damo73
on 11th June 2010
at 15:56
Hello Claire,
Absolutely - the argument that it proves once and for all that it is not to do with upbringing - is a total and utter red herring and quite damaging to push out there.
Twin studies back in the seventies showed a high probability of a genetic link and nobody in academia has followed the Bettleheim psychoanalytic stuff pretty much since.
1. They are covering up the fact that psychologists trained many years ago have poor CPD (as do teachers) and that the techniques/theories used can be harmful.
2. They are covering up the fact that many psychologists really don't believe many children have Asperger's (some may think it doesn't exist) and think it is a form of reactive attention disorder (RAD) and treat people as such. This is because of the unfounded dominance within child psychology of Bowlby/Ainsworth attachment theory. This is probably what the problem is - however, this research does nothing to stop it, as people will still think 'she has eye contact, she can't be autistic' etc. - what is the likliehood of a quick and easy test that gives conclusive evidence one way or another? What if there is more than one autism - that is more than one cause of similar labelled behaviours in the eyes of NT's? Not that I wish to spuriously sub-categorise, yet it is a logical possibility.
Answer - if ASC is even a possibility - than an 'expert' should be called in - this is certainly not the run of the mill psychologist as they are trained today.
'Real' academics - in my experience are very few are far between - as a case in point, I see myself as a relative novice. Many practitioners act as if they have all the answers - often it seems to me, this is a defence mechanism and 'act', because they never seem to have many. The best academics I have met are open and honest and do not claim to have all the answers - they are explorers.
Claire - it is 'far too obvious' - this is why people squirm when asked about it and don't really want to give an answer - as whatever they do, they will be upsetting an 'interest group'.
Damian - Community Champion
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Posted by
NickyB
on 10th June 2010
at 10:20
Hello everyone :)
This article is in the Independant today :
http://www.independent.co.uk/news/science/autism-and-genetics-a-breakthrough-that-sheds-light-on-a-medical-mystery-1996221.html
It's fascinating and potentially very important for the understanding of the genetic issues around autism.
I was annoyed, though, by the description of autism as a 'disturbing behavioural disorder' !
Where he heck did they get that from - it gives the impression that all autistic people have behaviour problems, and that it is something to be scared of. OK, calming down now!!
Also there is an interview with Polly Tommey, who is quite a controvertial figure. I don't share her views about autism, and was taken aback by this bit :
'I remember going to the library and looking up a definition of autism as
"the most severe form of mental illness. Most patients, if not all, end
up institutionalised".
I'm not quite sure which library she uses!! Has anyone else come accross this definition?
Anyway, back to the main point, it seems there is still much to learn about autism and genetics, but it's a promising start.
Nicky - Community Champion