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longhaul 2 hours ago

@SubiculumCode - replying as you are a researcher in this field. There is an increase in profound autism globally (I think this is the new naming to differentiate severe autism) which isn’t explained by sensitive instruments or inclusion criteria. You just don’t need them to identify profound autism, it is that obvious. Affected people need caregivers for life also causing severe mental and financial stress. It will only help your research to investigate this increase which perhaps will lead to medical breakthroughs.

SubiculumCode an hour ago | parent [-]

I agree 1000% that the full spectrum of autism must be included into autism research.

My research for the last 10 years has been dedicated to collecting and analyzing data for the Autism Phenome Project [1]. Unlike almost all autism neuroimaging research, we include the full spectrum of autism, with a third of our participants with severe intellectual disabilities, closely matching their share of the autistic population, as well as those who are non-verbal, have extreme specific phobias and anxiety, sensory sensitivities, self-injurious behaviors: the full spectrum. It still frustrates me to no end that almost every neuroimaging study you read by default excludes those with IQs less than 80, while our cohort has managed, through very hard work, managed to image individuals with IQs in the 20-60 range with regular success.

[1] https://pmc.ncbi.nlm.nih.gov/articles/PMC8801875/

amdsn 4 minutes ago | parent [-]

>It still frustrates me to no end that almost every neuroimaging study you read by default excludes those with IQs less than 80, while our cohort has managed, through very hard work, managed to image individuals with IQs in the 20-60 range with regular success.

I appreciate the effort it takes to include that group. My brother has severe/low functioning autism and he also has very limited language capability (limited vocabulary with simplified grammatical constructions, mix of ASL/SEE signs and spoken words, difficulty producing certain sounds). I've always found it odd that even studies that mainly use data gathered by imaging or other medical tests that don't rely on the subject's mental capacity to participate almost always have no subjects that resemble him at all. I've always assumed it's because it's significantly harder to manage such subjects and probably also very likely for their families to be unable to bring them in for testing in studies that span years.