According to research theres different genes involved in those diagnosed as young children to those diagnosed later in life and certainly those of us who were diagnosed as adults. The research states that theres no one cause of autism and that multiple genes are involved.
There's an article on it in todays Guardian newspaper.
The problem with selecting young white men to research on is whilst scientists may have a flatter base line to start with, this dosent' reflect the general population who are the intended recipients of the research. At least 50% of the population are left out if you exclude women, and probably another big chuck when you exclude people with other conditions, then you've got the thorny issue of minorities. When such a small sample of the population is part of the research and research samples small to begin with, then how on earth can those results be extrapolated across a wider population?
I wasn't actually pointing out the young white men in research samples as an example of sexism, but of very limited thinking on the part of researchers. If you've not read The Gendered Brain, then I highly recomend you do so, as not only is it a good example of flawed research in terms of race and gender, but how so many very small studies are used to make massive generalisations. This isn't just in autism studies, but in other medical studies.
women get excluded because of menstral cycles making things "difficult"
This is an unfortunate issue where it makes it so much harder for scientists to establish their measurements on a person who is constantly going through a cycle of hormone fluctuations, physical symptoms and, often, changes in mood.
Children, especially during puberty, are likewise harder to baseline because of changes going on in their bodies that can skew test results.
From a scientific point of view there is too much happening there when compared to the more steady state of the adult male physiology,
I don't think of it as sexism as it is simply a way to establish if their theory using the most reliable baseline they can find. It does mean that men will be more often used as guinea pigs though for the same reason.
As for the white element, 82% of the UK population is white (source https://www.ethnicity-facts-figures.service.gov.uk/uk-population-by-ethnicity/national-and-regional-populations/population-of-england-and-wales/latest/ ) so it seems reasonable that the majority of test subjects are also going to be white.
I do note from the same link that the non-white population has grown by a third in the last 10 years so this seems to indicate that there will be more "other" participants in future.
From a scientific point of view there may well be a drive to test a more homogenous group of people (same sex, ethnic origin, approx age etc) to compare results before expanding if the results look promising.
Studies are normally voluntary, so you can't study people who won't participate.
Smaple sizes in these sort of studies has always been a problem, it's one of the reasons why I like Gina Rippon's, The Gendered Brain so much, as she looks so closely at sample sizes and their make up. It's a problem with medical research in general, they always seem to end up with young white men, nobody wants to give untested drugs to children for obvious reasons, women get excluded because of menstral cycles making things "difficult", many minorities don't trust researchers not to be racially motivated. Although why they should exclude anyone who's not a young white male from studies on things like autism I really don't understand.
I concur with Cinnabar_wing limitations acknowledged - and looking at the paper with a cooler head
As the paper puts it:
"This indicates that there are several other factors that contribute to age at autism diagnosis."
As Martin points towards.
The thing that frustrates me is that the paper and the science is "good" within its limitations. For all its prior sins Nature has good current standards as far as I can tell. (or am I still being naive?)
Switching that into click bait journalism is the real problem maybe?
Lesson learned personally.
What flipping hope have we though in terms of wider public understanding tho' - sheesh...
Thanks all.
I did see this, but looked at the research paper, and what they said about sample sizes says it all. The usual suspects - 'limited size', 'mostly male' in the young group, and a lack of understanding of what the older diagnosed might have been like when they were young due to the knowledge gain over the years. It felt like another flimsy theory as unless they do a proper study of significant size and exam all factors, it felt like another false start. The problem being it's mostly pharmaceutical companies fund research if they think they can sell something at the end, and if you can't rewire brains they have no impetus to find out.
It is useful, it makes it harder for them to dismiss me, but it also makes them cross because all the BS has been exposed and if theres one thing that, that sort of person can't cope with it's being exposed as a BS merchant.
Given the numbers of older people being diagnosed it still makes me wonder how much of a minority we really are? I suspect that a higher percentage of people are ND than has previously been thought possible and that will bring social changes by itself, if 30 or 40% of people display some sort of ND then it's going to be pretty hard to call it abnormal and in need of curing.
I think you find a lot of ND people in social sub-groups, such groups tend to be more accepting than "normal" society.
I'm not surprised at what you from talking to autistic youngsters, to me it seems that many are held back from doing the things they're capable of, because provision always seems to come down to the lowest common denominator.
Thanks TheCatWoman
Please may I say that what you've written has revealed another side of you I'd not realised before on this chat site. :-)
not because I understand them, but because I can speak the language they use and disagree with them in a way that forces them to accept me as an equal.
gosh that's a useful skill!
I have had the opportunity to engage in dialogue with younger people diagnosed in childhood. Albeit a small sample and it is unfair to draw conclusions from this..
That said the thing that I pick up is that yes, they know they are autistic from an earlier age. Sadly I am not sure that this has helped the people I have talked with tho'.
The impression I have is that they have been given a problem with at best an unsatisfactory solution.
I wonder if we are now in a lag period between defining the problem and a workable solution?
Hehe maybe that's just me projecting my life experiences onto my observations!
The bit in the article and the paper that says there's a distinct genetic variation that leads to late diagnosis may be true - however for what proportion of late diagnosed people this is I haven't learned yet. Like yourself on reflection I can see myself as being "different" since childhood. As Martin suggests maybe environmental and hormonal triggers are involved.
I figure that if I grew up and lived with only autistic people then they would just be people - ok maybe observations and analysis would find subgroups - that's what people do.
Still, do sometimes wonder what that world would be like?
Maybe a better place :-)
I remember I watched a programme about an autistic teenage boy and his single mother and the problems described there made me also wonder like "hey, it's similar to me and my problems". But his issues were more extreme and he had intellectual disability, I don't.
I only read the newspaper article, so I can't answer questions relating to it. But I do think theres much more awareness of it in children which is making parents, think 'hang on a minute, I do that too, am I autistic' and go and get tested. I remember watching a TV programe back in the 80's about autism and recognising myself in some of the behaviours, although not as extreme as shown in the programe which made me wonder if I could be a bit autistic? Not knowing any more about it or having anywhere to go and find out more, I just parked it in the back of my mind, until the 2000's when at uni and meeting people with ND made me go back and look at it again. It was still very hard for a woman to be recognised as autistic at that time, people were only just starting to recognise that not only women were autistic, but displayed it in different ways to their make counterparts.
I know I've had autism all my life, I can remember various things that looked back on now are obviously autistic. But there have been times when it's been less problematic, being on silent retreats taught me a whole new way of being with people, counselling taught me how people work. It's not easy and never has been, people who know me well forget I'm autistic, until something happens and we stub our toes on it, mostly we laugh about it, but I still get some very strange and serious looks and the words, 'No, that's really just you'. I guess I'm lucky that I'm at a time in my life where I don't have to put up with so many ignorant people and can stand up for myself when I do come across them, my counselling experience has been a great help, not because I understand them, but because I can speak the language they use and disagree with them in a way that forces them to accept me as an equal.
I do wonder what life would of been like had autism had the same recognition when I was young that it has now? Young people who've been diagnosed in childhood seem totally different, almost another culture, to me now. I'd love to have some dialogue with them, because there seems such a distance between us in our understanding and experiences.
Your energy levels and ability to recover reduce with age. So it will become harder as you age. You are not becoming more autistic, just less able to manage it without easing off a bit.
That said, you do also adapt and become better at things with age. Also fewer things are new and you have more routines to reduce pressure. So it can balance out a bit till something major happens.
My mom is (in my opinion) a bit narcissistic, it's like covert narcissism. She will do everything for people around like neighbours or relatives to be perceived as an angel in human skin, but I was always the problem she had to hide or explain away and she has never taken me seriously, till this very day. I faced a lot of gaslight from her and I would have never involved her in my diagnostic process. When I tried to explain to her, how she hurt me, she got super angry that how do I dare to have any complaints to her.
There was a lot of stigma for mothers then too. little understanding or help available 30 years plus ago. Not being diagnosed until late has given me much better understanding of both sides of things. I had to reassure my mother she had done nothing wrong the other day with all the paracetamol bs in the news.
It may reflect a difference between people who spontaneously display autistic traits and those who only display recognisable autistic traits when their abilities in coping with social pressures are exceeded. This most often happens when starting school and again when puberty hits. These differences possibly have a genetic component, but it is the environment and hormonal changes that act as triggers.
great thread TheCatWoman
So, as I see it based on the original paper (thanks againTrev ) the paper says that there is a distinct genetic difference between early diagnosis autistic and late diagnosis autistic people.
Am I right in thinking this cuts across the "more awareness of autism that's why more late diagnosis is taking place" analysis?
Personally I can look back through my life and go "oh yes - that makes sense now" so I was autistic all along...
Eventually I had exposure to a model of "autism" that I could hang my hat on metaphorically...
I got by in society until eventually my "otherness" had to be acknowledged by myself (and hopefully other people - who, guess what?, knew all along...).
Oh goodness me that's a "curve ball" into understanding what's going on!
I can't read the article as it wants me to pay, but I'm wondering if they took gene expression into account?
I remember some years ago hearing about identical twins, one who stayed slim and the other who was overweight - this was apparently because of a difference in gene expression. I think they said that the gene for being slim was switched off in the overweight twin, due to environmental factors. So perhaps some genes in older autistic people are switched off by factors such as stress (which is a common experience for autistic people)
