what kind of autism research would you do?

By the way, have you seen this? https://research.ncl.ac.uk/adultautismspectrum/

Newcastle University has an Adult Autism Spectrum Cohort to try to understand adults with autism and those that were diagnosed late in life. 

If I were doing research into the genetics of autism, I think my main interest would be for the pursuit and advancement in scientific knowledge. I also think it will help with early diagnosis and identification. I've struggled a lot because of a late diagnosis, and if a genetic tests were available, I might have been able to access support sooner. 

I don't think it will likely be studied with eugenics in mind, as it's a relatively rare condition, compared to others where the diagnostic rate is higher. It would be more appealing to get rid of asthma, dementia, allergies, depression than autism - if anyone is doing eugenics. 

The thing about insurance companies is really unfair. People don't chose what conditions they are born with, but charing people with a higher rate because of an innate condition is really unfair. I really do not hope that the advancement of genetic knowledge will be used in insurance companies to discriminate people.

Yeah, that's true. People willing to participate in research studies might be a different population compared to those who won't show up in research.

I can relate to you about what you say about the family stuff. I think some of the people in my family view a diagnosis as a negative thing. 

Also, there are some people who prefer to remain undiagnosed (which is fine and is their choice).

So many factors will make it difficult to test every kind of autistic person. 

Yeah, I guess it'll be difficult, unless a nationwide screening for autism is carried out periodically for future generations, otherwise, even with increasing awareness there could still be people who are overlooked. The safest way to do the research might be to ask family members of people who have a diagnosis to come into the lab and have an assessment, but I guess that will be quite hard. Maybe a large-scale study on "autistic traits" might be more doable than "autism diagnosis" itself? Questionnaires like the AQ could be sent out to millions of people to complete, and we could see if families consistently score high or low together. 

I don't really believe in the MMR stuff either. The original paper on vaccines was retracted and had many problems in their research. There has now been so many papers (with very large sample sizes) showing that vaccines do not cause autism. 

I think more likely environmental factors could be like complicated births as well as drug and alcohol use during pregnancy (since these complications affecting the brain in infancy can cause a lot of developmental problems). Another environmental factor could be social, like being deprived of of social interaction during childhood, e.g., a study done on Romanian orphans showed that they had autism-like symptoms: https://www.spectrumnews.org/opinion/viewpoint/romanian-orphans-reveal-clues-origins-autism/

I guess it will be hard to tell what are exactly the factors, but it's easy to believe that both might be involved. It's really nice to hear that she is not experiencing any learning problems! That's really good. It's often the case they birth traumas can cause developmental problems like cerebral palsy. It's possible that both genetic and environmental factors could be at play (since you mentioned that there are several autistic people in the family), but the most important thing is that she is healthy and happy.

I guess it's harder to do it retrospectively, as they will need to interview lots of people to collect the information, and it will be based on memories of mothers from 40 years ago. So I guess people who are starting in the field would prefer to the research by starting from recording data in hospitals where it takes place. I remember hearing something about preterm and birth trauma studies being planned for the new Cambridge children's hospital: https://www.cam.ac.uk/research/news/cambridge-receives-ps100-million-for-major-new-childrens-hospital It's been a while back since I heard about it, so my memory is a bit fuzzy, but I think they will try to record lots of data and look at both physical and mental health in relation to lots of factors.

Yes, I really like this research, and the way it tested the double empathy model. The finding that AS/AS empathise with one another equally well compared to NT/NT is a very important one as it enhances our knowledge of these interactions, and how empathy works among AS and NT people. 

The statement from Damian Milton is interesting. If AS/AS communicates as well as AS/NT, then the social deficit that arises from AS/NT is really mind blindness on both sides, instead of from AS. It's an interesting idea. I guess that explains why people on these forums can often find so much in common and sympathise with each other.

I think it's amazing that you are keeping up with a lot of recent literature on social aspects of autism. And many thanks for sharing these. The research is definitely interesting. I also read spectrumnews sometimes as well when I'm not busy. A lot of the articles are quite insightful

And you my not dear NASty creation are cruel and criminal. You advocate violence and heroin. Yet you tell people you have been a social worker! You said you went to prison the first time at 17. Yet you claim to have diagnosed forensic psychiatric patients! For crying out loud! You probably are one. You could be holed up in Rampton. Or you could be a man. You are a NASty creation and as a single avatar have been allowed to go way beyond what is legally permitted. NAS deleted your words when I told them so, yet this poisonous avatar is still allowed to be here. How many people are inputting this rubbish over the years? 

Well, i am soon off to the gas chamber of real life. It’s full of refreshing oxygen, not your odious, poisonous cow pats. I’m cured!!! I recommend a time with your group to realign any autistic! Youre a miracle worker! - except anyone who knows what the bible actually teaches knows that miracles do not happen at present. Good night. Sweet nightmares! Oh I forgot, you are one.

Thank you Rip Van Wrinkle. I appreciate your honestly in sharing with me what you think about me, I’m sure that couldn’t have been easy and it shows a level of maturity that not everybody has. As for the rest of what you said, like your previous message, I have no idea what it means. But I think that this is as far as it goes now, for you and I, so I won’t ask you what it means or try to work it out, I will simply honour your wishes and cease any further communication with you. Namaste

Not much you say makes sense either. The life you pretend to have/have had is impossible for one person. You are impossible. You are an insult to the rest of us with autism. What’s more, you represent a composite of all the negative stereotypes. If you are one real person, look around you. Accept where you are. If you can’t do that, then you are not a real person to me either. Absolute truth is just that. Truth. Empathy includes consideration for others. Stay in your cell if you want to. You don’t have to. It’s your choice.  Don’t blame anyone else for your own decision. 

People are too busy showing off on FB and completing their family tree by handing off every detail of their lives online - so all relationships and links are known - and now they're giving away their DNA - they are so naive.   

In that case any insurer or employer might ask for a blood test... and will. All your life will be affected without any control.

It is also not certain that you'll get any support, do you get anything useful now? It is in societal attitudes mostly, isn't it?

I think genetics is a huge pandora's box and society hasn't caught up yet with implications and safeguards.

Like the recent scare about disclosing to DVLA, the only control now is in keeping it off records.

I’m not sure what you mean? I have accepted who I am and I’m not sure what you mean about autism being a special badge of honour or what you mean about what honesty is but you’re clearly taking to me because you said my name, so could you please explain, I honestly have no idea what you’re talking about? I’m not sure when I’m going back to Bali, I’ve still got quite a lot to do over here although I would like to finish my recovery off over there, for several reasons, so I’m not sure yet, I usually just follow my intuition but I’m trying to be a bit more strategic this time. 

You are just BlueRay here. Get used to it. That is YOUR unique personality. Autism is nobody’s special badge of honour. Accept you are you. Forget the mumbo jumbo. And check out what the definition of absolute honesty is, PLEASE!!!! When are you jetting off to Bali? 

The diagnosis and what it’s called is less important to me, in fact, what they call it doesn’t mean much to me at all, they can call it what they want, it doesn’t change who I am.  I identify as autistic and I have very typical autistic/aspie traits, I tick all the box’s, no empathy (in the way it is mostly experienced/expressed by the majority of people in our society), I’m blunt, honest and don’t have any social filters although I have learned some over the years, I like my own company, like to do my own thing, I have no interest in relationships or friendships really, I don’t pick up on social cues etc etc, love to talk about my special interests etc etc etc.

And of course, everyone is affected by their up bringing etc but only to a point, once we get to be adults and start to make our own choices and get our own values etc we become our own people but even before that, in relatively healthy families anyway, children form their own personalities and characters even before they reach adulthood. Me and my siblings are all different and I’m the only one diagnosed with autism, which I got after I was 50 (don’t know how old I am but I know I’m more than 50). 

Not their job to consider it - they only care about risk & profit.

Indeed.  I think it's just that, since I've become aware that my personality type is listed in that great compendium of "What's wrong?", the DSM, I've paused to reflect.  

The inherent me-ness is right, so right, though, and it's not going to change.  :)   

Yes, i do believe it to be inherent and part of my wiring.  i have always been like this, and can see it in my earliest memories.  But then I've also seen estimates that personality is 50% heritable anyway so, even if autism is genetic, I still don't see this in itself as making it different from other personality types.   

There are certainly doubts around diagnosis too, not just for me personally, but more generally speaking (see the work of Sami Timimi for example).  If each iteration of the DSM involves significant changes then to my mind this reflects on the validity of the various categories.  Plus if the ASD diagnosis represents a hugely varying group (a massive spectrum no less), how can we assume that the same label is equally relevant to all? 

So...   For the first 5 decades of my life this "autism" wasn't picked up (in spite of contact with services), a few years ago it would have been "Asperger's" (this was still mentioned in a letter from the Access Service to my GP), but now that that's off the menu, it's ASD.  It does make me wonder what it'll be in a few years' time.  

Either women are unaware what a man might feel is abuse, or it is deliberate for many reasons not needed to go into here. Women can be paedophiles too. Again not needed to be expanded upon. This is the 21st century and some cultures are experiencing a huge backlash. I wouldn’t know if a man feels abused unless he tells me, or unless I recognise it as an observer. Just saying. Gender doesn’t make an angel.