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?

Parents
  • 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. 

  • 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. 

Reply
  • 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. 

Children
  • I am as yet undiagnosed but after discussing things with distant relatives then I know:-

    1.  Hand movements is a Paternal Family trait as well as other physical markers.

    2.  I know my father, two brothers and several sisters were probably on the spectrum (as I have some common traits).

    3.  I am also sure I have a few spectrum traits from my maternal side too.

    It is these than make us who we are - nature not nurture - whilst some environmental/development triggers may make us more prone to the outcome later in life due to the lack of knowledge and coping mechanisms.

    For me any research needs to be broken down into areas (five senses for example) and then build a questionnaire and group to survey.  Maybe from this the range for say touch (types of human contact, clothes, weight of cover, etc including environment) can be measured and some common/unique issues defined.

    I am pretty sure I have little or no triggers for touch, smell or taste with my main ones being audio-visual.  

    There also needs to be IMHO more visibility of the various subtleties within the TV/Film/Media - I know Chris Packham is someone I now have some empathy for with some common traits with me.

  • 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.

  • 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 

    www.nhs.uk/.../

  • 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.

  • 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?