Suppose you have the funding and technical skills to carry out autism research (e.g., questionnaires, qualitative interviews, MRI, EEG, behavioural experiments, virtual reality, etc). What kind of research question would you like to ask? What autism question do you think is still not well known, and what would be your solution to solving it, or extend current knowledge?
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, it is fraught with difficulties. I already have an unrelated genetic condition and any life insurance I were to take out would involve paying a premium of at least triple the usual rate. I'm not sure I'd be able to take out another mortgage either, knowing what I now know. Or pass the medical for a new job.
I feel differently about autism (it's not a progressive disease like my other condition and I see it more as relating to my identity) but when it comes to the open market of insurance my feelings are neither here nor there. That means I'd have to believe my information was held securely and for my own purposes only. Very hard to guarantee this so i would definitely have concerns.
Noneltheless, since we're now diagnosed anyway, I guess we'd have to declare it to avoid invalidating any policies. i suppose I'd also have to tell a potential employer (although i'm now convinced that if I ever work again it will be on a self-employed basis, very probably because of issues relating to autism).
It's certainly a vexed area but I still wish i'd known sooner. If an NHS blood test could have identified this, i'd have gone for it. My need to know would be too great.
Who on earth do they think advanced science and technology? To some degree they would be shooting themselves in the head.
I worry about the genetics research into autism as there is the risk that it could open the door to eugenics, also what worries me is alot of the people who are studying this in the states have firm ties with people who want to eradicate autism.
You are JennyButterfly as far as I’m concerned! The labels and diagnoses are for professionals to use to categorise a myriad of personalities and even perhaps those they think of as ‘difficult’, ‘time wasters’ and ‘heart sink patients’. I’m me. It’s my personality. Ain’t nothing going to change that, except if I make an honest mistake and someone tells me so. 
Overall I tend to agree that the emphasis on genes can take us into a very unethical direction. I can feel i might upset people on this subject and so often pull back for precisely that reason.
Unfortunately, people are so dumb that they are handing their DNA and relationship information over to 3rd party companies without realising the implications about where this information is ending up - some police forces have admitted getting access to it.
Once insurance compainies start mining the information, you might find you become uninsurable because of your likelyhood of developing an expensve medical problem.
If people don't believe your information is being sold on, then they are naive.
No nothing to do with vaccinations. It clearly states they are not a cause I was referring to this page which they updated February this year
Overall I tend to agree that the emphasis on genes can take us into a very unethical direction. I can feel i might upset people on this subject and so often pull back for precisely that reason.
But that said, if there had been a genetic test I would have been able to identify my autism much earlier and this would have helped me to access support and also gain more awareness and understanding while i was in the workplace and at an earlier stage in my parenting. I might also not now be in the position of seeing my sons flounder in life because they weren't diagnosed either and so likewise didn't receive any support relating to issues arising from autism.
As it stands decades have gone by and so any benefits associated with early identification have been lost. Can we make up for lost ground? I don't know.
Yes, this is similar to my experience. i couldn't identify autism in my sons because many of their behaviours were our "normal" and fitted right in.
I'm also wondering about personality type and I think that would definitely make another interesting thread. For years I identified more as a highly sensitive person (HSP) so am now left pondering how this differs from our brand of autism. To me this is very puzzling. I can find myself as "autistic" in the DSM, "highly sensitive" in Elaine Aron's books or INFJ-T on the Myers Briggs test ("Other interesting personality tests are also available" :) ). To which of these might I give most credence and why?
I am autistic, apparently, but I grew up surrounded by such behaviours/attitudes, so it was ‘normal’ for us. I wonder whether such an environment/situation in the early years (pre school) can further shape an already autistic type personality? To me it is a broad type of personality, not a defect at all. However, the behaviour I inadvertently seem to have mirrored in psychiatric settings, perhaps to ‘fit in’ I defininitely learned there! Perhaps that’s for another thread one day.
I think relationships require genuine research with robust high quality science and ethics. There is some unethical pseudoscience without any scientific method, with unethical ableist spin floating around and causing psychological damage to autistic people and spreading prejudice.
A robustly designed research to explore whether / why autistic people are more likely to end up in abusive co dependent relationships with narcissists and Borderline Personality Disordered spouses. When accusations are floating around, spouses need to be assessed and diagnosed as well.
There is also need for research for support - mental health, practical support, psychotherapy for families where partners and children are on the spectrum. To help the spouses and the family unit as whole to stay sane and connected. Not as a way to pull them apart in acrimonious damaging way, but as a preventative and supportive intervention, a service.
The 'total attachment' thing, families need it too.
But if your behaviour was learned, it would not be autism? You are autistic because you can't change it. Learned behaviour is deliberate, you can unlearn it and learn another behaviour, which autistic people can't.
The last big announcement of genetic research found there are many different unrelated genes and their interactions and genes that cause mutations that can or cannot result in some genes to cause or not to cause autism and basically they found dozens more questions and haven't answered any of the one's they asked.. basically it's so complex even scientists aren't sure what to make of their findings 
. I obviously don't understand a thing
There is a lot of genetical research going on and autistic activists and autistic scientists argue that it is disproportionate and potentially unethical. What would be the practical application of genetic research? What would be the effect on human diversity and general pull of talents and abilities if autism was genetically cleaned out?
If I recall, that reference to environmental factors got there as a node to MMR scare. It was added in full MMR histeria.
There was this case with some girl who regressed and developed 'autism like symptoms' after vaccinations. There was research and a court case where 'thimerosal' in vaccines emerged as the toxin at the centre of a controversy. Then it was demonstrated that thimerosal is not actually in modern vaccines. I didn't follow the ins and outs, but now this vaccines being the 'environmental' factor' idea is completely discredited.
Thank you Qwerty for your comments. I am just me:). Your thread is very interesting indeed.
on the other hand, since AS sometimes have trouble with cognitive empathy, or just have different traits (e.g., different sensory requirements), they might have more trouble
I think the double empathy model and this research to some extent basically bust the idea of low empathy, cognitive or not. Basically AS/AS empathise with one another equally well compared to NT/NT .
A lot of autistic people comment that NT do not empathise well if at all with autistic people. Their empathy is not in evidence. It is just assumed and perpetuated as the stereotype about autism.
I read this recently:
https://thepsychologist.bps.org.uk/me-and-monotropism-unified-theory-autism
'As someone on the spectrum myself, I dislike the pathologizing, deficit-based framing of the best-known theories of autism, and I hate the mistakes they lead to in practice: assuming we lack empathy and have no idea what’s going on in anyone else’s head; painting autistic cognition as inherently more ‘male’; expecting skills we’re slow to pick up as kids to be lacking throughout our lives.'
And this:
'[In relation to] ‘mindblindness’, ...
Here again, we see an external observation of autism, judged against neurotypical norms. Look online, in Facebook groups or under Twitter hashtags such as #actuallyautistic, and you will see social life flourishing – reciprocal, empathetic, intuitive, and ringing with emotion. You’ll find mutual support and jokes; heated debates and silly internet memes. There’s no denying that a lot of the chat centres on the pressures of everyday social life, but there’s also no mistaking that the capacity is there. The priorities are different, that’s all, and there’s a greater understanding of the need to sometimes retreat, process or ask questions. The advent of social media has transformed the ability of autistic people to seek out kindred spirits, control the tone and content of their discourse, and combat the loneliness that so many report. But it also reveals something that many neurotypical people have so far been unable to perceive.
The sociologist Damian Milton at the University of Kent argues that mindblindness goes both ways. If we see social situations as dynamically constructed between the participants, rather than defined by static, universal rules, it is impossible for one person to have a social ‘deficit’; the failure lies in the mutual creation of a social reality. Therefore, when communication fails between autistic and nonautistic people, we must surely consider whether the mindblindness is mutual. Milton calls this the ‘double empathy problem’: neither party is able to interpret the gestures, tone or pace of the other’s conversation, and so both participants leave with a sense of ‘otherness’. However, because autistic people are in a minority, in mainstream discourse – including the language of respected tomes such as the DSM – neurotypical mindblindness is invisible.'
I am probably a bit of an idealist and also undoubtedly overlooking some factors which might impact, but my feeling is that lots of information will already be there, were the research teams directing their work into this area.
Many of us already in our 40s, 50s and 60s would be able to give information about birth trauma and problems in pregnancy (for example, my own mother is in her 80s and has a very clear recollection of her pregnancy and my birth). So some data on how life was affected (or not) will already be there for those of us whose lives are already at least half lived. This might then suggest useful areas for further research in the next generations.
Within my own family I'm convinced it's largely genetic as i can see that many of us are autistic, including some born in very different times (the 1920s) or in another country away from the original family and their ongoing patterns and influences (e.g. third generation of family members in Australia).
I think families like us present a research opportunity but, of course, no researcher has ever approached us.
There are people looking in to this, but like you say it will be years before any form of data is available it also depends if autism diagnosis later is linked to previous problems. My daughter was induced pre-term and was small (4lb 8Oz) then got group b strep, pneumonia sepsis and several clots on her brain she was put in a coma and had to be repeatedly resuscitated she also had almost toxic blood gasses as her lungs struggled to cope with ventilation. Anyway she recovered and we were told she would have severe development delays learning difficulties, she was a bit slow with somethings but has no learning problems, we have no doubt she is autistic. But we also have the genetic factor as there are several autistic people in the family and we believe her dad is as well. I just wonder if that and the complications together were a factor?
Since my own diagnosis I can see quite clearly that many of them were/are autistic too
Yes - me too - I strongly suspect my (late) mum and her (long dead) dad.
I wonder whether I personally have inherited genes or learned my behaviour from my environment ie my family and psychiatric wards. Does anybody else have similar thoughts? I feel it is a mixture of both. It would be great to read a study on nature or nurture or is it both coming together in relation to Autism? Does anyone know of such research?
