what kind of autism research would you do?

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?

  • I'm enormously interested too.

    However, I think it's currently very difficult to know much about the likelihood of, say, being in a relationship, or a job or anything much as long as the samples used in the research only represent a portion of the community.  If a large proportion of autistic people remain undiagnosed, the results of any research will be very skewed and unrepresentative.  

    As an example, my own, very large family won't show up in any research.  I have lots of aunts and uncles, some now quite elderly, some deceased, and lots of cousins too.  Since my own diagnosis I can see quite clearly that many of them were/are autistic too and that this has affected their lives in many ways (some of which indicate that they weren't really "high functioning" at all).  I can see it spanning at least 3 generations.  I wonder how many families show a similar pattern.

  • I think both of these topics would be very valuable!

    I think looking into the wider family would be very helpful. It's likely that there might be other people in the family with autism, but hadn't been identified, and it would be useful to have that information or opportunity to find out about themselves. Another thing is that in some cases, family members who don't have autism might often be overlooked, all the attention goes to the one with autism.

    I really like the idea of doing research on older generations as well as people who were diagnosed very late, and those who had been previously overlooked and unsupported. I think it would not only be valuable to the older generation living now, but I believe even in the future, there still could be people who are overlooked, and they might feel even more left out if diagnosis is becoming more common.

  • I think it will be difficult because so many adults were never diagnosed - and practically no grandparents.  

    It will, however, be a growing area of research in the next few decades.

  • That's an interesting question. There have been studies showing for example siblings are more likely to have autism if another one already has autism. They are also studies showing that parents, relatives, and siblings of autistic people who don't have the diagnosis still show more autistic traits. I do wonder as well how genes like these are passed on if autistic people are less likely to be in relationships. I have been wondering, if autism might be passed through multiple gene inheritance (https://en.wikipedia.org/wiki/Polygene), such that many genes interact additively to influence a phenotypic trait. So one example might be height, i.e., tall people are more likely to have tall children, but the exact height of the child would be hard to calculate. Suppose some criteria (like autism) classifies people over a certain height e.g., 2 metres, to have a disability (not being able to walk through doors without bending over), parents who are 1.8 metres, could possibly have 2 metre children. They are also more likely to do so than 1.5 tall parents. But they themselves might not meet the criteria, even though they have traits. Not sure how much this has been studies in autism, but it would be an interesting topic.

  • What I've heard form most people is that it's an interaction of both genetic and environmental factors. But, yes, it would be very useful to know exactly what those factors are. I think there are some teams that are looking into difficult births, birth trauma, and preterm birth and the effects they have in future life, but it requires establishing a very large database, and waiting for those children to grow up to be able to track them as they develop, so maybe we will know more several years later as these studies become more available and give new insights. 

  • Thanks for sharing this new research, Tinyexplorer! This does sound interesting. I have been wondering for quite a while whether AS/AS work well together or not. On the one hand, AS/AS might understand each other's difficulties better, or have shared common interests on some topic; 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 in understanding each other. I started a thread a short while back on a hypothetical question "what if everyone in the world had Aspergers": https://community.autism.org.uk/f/miscellaneous-and-chat/15041/what-if-everyone-in-the-world-had-aspergers There are some interesting comments by many people.

    Thanks for sharing the link about the DART project! It's really interesting that they've found that information sharing in AS/NT is lower than AS/AS and NT/NT. I really like the idea, and it's very new and interesting. 

    I also agree it would be very interesting to see exactly which signals are malfunctioning in AS/NT. Which signals they both miss and how to tune into them. There's some really interesting work in Princeton looking at how synchronised two brains are when e.g., they are watching the same movie, or communicating in a speaker-listener relationship: https://www.hassonlab.com/brain-to-brain-communication I think they've mostly just used NT/NT interactions, but I think it would be interesting to compare AS/AS, NT/NT, and AS/NT. Not really sure what will come out, but maybe it will shed some insight into how people exchange information and what signals are malfunctioning in AS/NT. 

    It's really nice to read your post and hearing your insights! You seem very knowledgable Slight smile

  • I would do research into the patterns of autism and its effects (direct or indirect) within families, i.e. through the generations and within the wider family once one family member is identified.  This would be with a view to providing more effective information and support that doesn't stop with the individual.

    i would also do research into the older generations of autistic people - what happened, what helped, what harmed etc - in order to build information and support for people with a very late diagnosis who have previously been overlooked and unsupported.  

  • I'd be interested in the genetics of autism and following it through family trees. 

    Especially when autistic people are less likely to be in relationships so less likely to pass their genes on.

    Is it just the high-functioning auties passing on the baton?

  • possibly research in children with autism

  • Alot of autistic adults that I have spoken to believe that you are born with autism as it occurs as the brain develops in the womb, however the NHS and many other places state that environmental factors play a part as well as health at birth. 

    I would like to see further research into children who have had severe birth trauma or early onset sepsis and possible link between this and autism. 

  • There is brand new research showing that  AS/AS work well together, exchange information, as well as NT/NT, but ASC/NT do  not work as well. Basically a qualitative confirmation of double empathy problem and prediction that autistic people would interact well.

    http://dart.ed.ac.uk/research/nd-iq/

    What would be interesting is to see exactly which signals are malfunctioning in AS/NT. Which signals they both miss and how to tune into them.

    It would also be interesting to know what triggers bullying, in terms of those signals, what signals do people pick up and react to when they start bullying autistic people. This not necessarily uniquely in relation to autistic people. Just human condition - spell it out.