What research would you like to see done about autism?

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YouAreNUF
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11 Jun 2021, 11:22 pm

I'm doing some research studies about autism and wanted to see if there are any correlations involving autism that you are interested in finding information about? I believe most of the data we have right now is inaccurate for several reasons including the relatively few number of autistic people who ever get a diagnosis, so feel free to suggest ideas even if there's already established statistics about it.



MrsPeel
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12 Jun 2021, 2:05 am

There are so many research topics I would love to see explored!

For example, just taking the topic of comorbid anxiety:
- Anxiety is a common comorbid, but studies show wildly varying percentage prevalence. It would be great to see studies adopting common benchmarks to get a handle on the real figures.
- Is anxiety related to difficulties autistics face in society, or is there a neurological difference that makes us prone to anxiety, or is it related to both?
- Does anxiety look different in autistics than in the general population?
- Psychotherapy is a common treatment for anxiety. Is this approach equally successful with autistics as with the general population, and should the techniques be adapted to suit autistics?



Double Retired
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12 Jun 2021, 9:00 am

(1) I suspect that how an Autistic is raised is likely to greatly affect how well they do in life.

The theoretical-best-but-impossible way to test that is to get a large number of young Autistics, raise them differently, then wait 50 years to see which upbringing factors produced the "best" results.

A possibly practical way to explore the issue would be to find a significant number of older Autistics (WP might be a place to start!), find out what you can about their upbringing and look for patterns. Do the more successful (as in coping with life) Autistics have any common factors in their childhood?

For instance, I was not diagnosed until I was 64 and I look good on paper--I coped well enough that my Autism almost escaped detection. There are a number of things from my childhood that I suspect helped me. My parents were a strongly bound couple. We never moved during my childhood. We lived in the suburbs and there were plenty of woods for me to play in. I recently learned that my parents thought I was doing "weird" things but made a conscious decision not to punish me for them because I was just like that, I wasn't really being bad. I had my own bedroom. And so forth. There are a lot of things that I suspect helped me along the way but I don't know for sure which, if any, really did help.

Screening a significant number of older Autistics (with different degrees of success in life) might identify some interesting patterns in their upbringings.

(2) Elsewhere on WP there was recent mention of a study looking at employment statistics for Autistics. But I suspect the results are skewed because not all Autistics have been identified and diagnosed. Autism in individuals with mild severity might escape detection (it was a fluke that my Autism was discovered when I was 64...for more than six decades any broad study of Autism would have thought I was NT!).

So, I think that raises the question: How many undetected Autistics are out there?

You're the researcher so you'd have to figure out how to test that. My guess is you screen a large pool of supposedly neurotypical people and figure out how many undiscovered Autistics are in that group.


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12 Jun 2021, 9:16 am

i consider Autism & it's traits genetic inheretance / carried genetic ..

similar to how people carry a gene for twins / redhair / albinoism etc.

sometimes a parent carries a gene despite not having the features of that gene.

i'm curious to how far back the line stems , and if it can be sourced back to a specific origin . do conditions during the womb process affect Autism severity ? ( excuse my lack of a better word )



IsabellaLinton
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12 Jun 2021, 9:28 am

I'd like to know more about the genetic component, and scientific neurobiology about what happens differently in our brains.

I know there are differences to our cerebellum, and the autonomic nervous system. I wish this was more clearly understood. Similarly, I'd love more research done about our difficulties with sleep and relaxation.



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12 Jun 2021, 9:43 am

I'd like to know about all of the genes that can cause autism, and what different symptoms and comorbids are associated with different genes.


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Empathy Quotient: 34/80
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Udinaas
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12 Jun 2021, 9:44 am

More about adult autism in general. The research is ridiculously skewed towards children.



Double Retired
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12 Jun 2021, 12:56 pm

HeroOfHyrule wrote:
I'd like to know about all of the genes that can cause autism, and what different symptoms and comorbids are associated with different genes.
Note: SPARK "has helped researchers discover new autism risk genes. There are now more than 150 genes known to play a role in autism and other neurodevelopmental conditions." With that many different candidate genes, apparently any one of which might cause Autism, I'd agree that genetic research should be useful. The Autism Spectrum might encompass more distinct "disorders" than suspected.


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HeroOfHyrule
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12 Jun 2021, 1:01 pm

Double Retired wrote:
HeroOfHyrule wrote:
I'd like to know about all of the genes that can cause autism, and what different symptoms and comorbids are associated with different genes.
Note: SPARK "has helped researchers discover new autism risk genes. There are now more than 150 genes known to play a role in autism and other neurodevelopmental conditions." With that many different candidate genes, apparently any one of which might cause Autism, I'd agree that genetic research should be useful. The Autism Spectrum might encompass more distinct "disorders" than suspected.

This is why I'd like more research into this. I'm interested to know how many of those genes will be confirmed as causes, and how many will end up with their own disorders. I think that'd also make treatment more helpful to different people, too.


_________________
I use he/him pronouns.

I like playing video games, watching cartoons and anime, reading, and cooking.

I have two cats, a rabbit, and a dog. I also enjoy learning + cataloguing information about different types of animals and plants.

Empathy Quotient: 34/80
Systemizing Quotient: 104/150
Friendship Quotient: 56/140
Autism Quotient: 36/80

RAADS-R: 169

CAT-Q: 153
Compensation: 57
Masking: 47
Assimilation: 49

Your broader autism cluster (Aspie) score: 144 of 200.
Your neurotypical (non-autistic) score: 63 of 200.
You are very likely on the broader autism cluster (Aspie).


Double Retired
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12 Jun 2021, 1:12 pm

HeroOfHyrule wrote:
This is why I'd like more research into this. I'm interested to know how many of those genes will be confirmed as causes, and how many will end up with their own disorders. I think that'd also make treatment more helpful to different people, too.
Agreed. I'm just hoping they produce a useful taxonomy of those different disorders so their differences can be studied properly--rather than producing a prenatal screening test used to decide which children should not be born.


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YouAreNUF
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12 Jun 2021, 4:43 pm

Just wanted to say I appreciate all of the suggestions and I promise to update you all when things progress. Please keep the thoughts and ideas coming.



ToughDiamond
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12 Jun 2021, 5:27 pm

I'd like to see more about executive disfunction, especially what happens when people with ASD try to do this or that, why they fail, and what workarounds there might be to mitigate the failures - particularly workarounds that the ASDer can apply themselves rather than asking for adjustments by others, which doesn't necessarily happen. There might already be a lot known, but I've not been able to find much myself. Not much that's expressed in terms that I can readily understand or relate to, anyway.



Dear_one
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12 Jun 2021, 8:33 pm

I'd like to see work done on how much damage, stress and loss is involved in training us to act normal. Also, as an alternative, what can be done to develop working partnerships to use the special talents we can develop, but can't market ourselves.



IsabellaLinton
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12 Jun 2021, 8:50 pm

Dear_one wrote:
I'd like to see work done on how much damage, stress and loss is involved in training us to act normal. Also, as an alternative, what can be done to develop working partnerships to use the special talents we can develop, but can't market ourselves.


Yes, and more research about autistic burnout. We all know what it is and how it feels, but there isn't much literature to validate the phenomenon or measure and explain it to others, especially health care and disability insurance providers.