Published on 12, July, 2020
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'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?
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.
Sorry for the delayed reply. I hadn't been on this forum over the weekends.I can relate to what you say about family not wanting to hear about it. I haven't told most of my family. I think my family also view it negatively and would prefer to not have a label.I agree with the downside of people making their own choices. I suffered a lot from undiagnosed autism. I had teachers suspect I might have ASD when I was younger, and they even told me they suspected it, but somehow I never went for a formal assessment/diagnosis. It obviously wasn't my decision since I was a child, but I guess it was either the school's decision or my parents' decision to not look into it further. I wish I could have been diagnosed earlier and have gotten more support for it at school.
I have mixed feeling about this. I've only been diagnosed for a few months but it seems that many in may family don't want to hear about it and certainly don't want to be assessed themselves.
And yes, people do have the right to make their own choices but even here I can see a downside. My own take would be that that's their choice but that sometimes the effects of this on both themselves and other family members are far from fine. My experience has been that when individuals are running into severe difficulties linked to undiagnosed autism and choose to carry on regardless, the impact of this choice radiates out and impinges on the rest of the household. Good practice, the law and indeed our better nature force us to respect an adult's autonomy, but sometimes this becomes ridiculously difficult.
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.
Jenny Butterfly said: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.