Dr Ginny Russell found earlier this year that although global estimates suggest around 50% of people with autism also have a learning disability, this group is massively under-represented in research. #LDTchat

Russell said people with learning disabilities represent a "harder to reach population" and many researchers simply don't have the time to devote to securing their involvement. #LDT

The onus then is on funders of research to make sure those things are taken into account when they fund research to start with..." #LDTchat

&#34;One of the most bizarre paradoxes in autism research is that most of the research is causation/cure oriented, ostensibly for the benefit of those who are &#34;severe&#34;/have co-occurring intellectual disability.&#34;But those aren&#39;t the people who get recruited for the studies.&#34;To be clear: I don&#39;t think causation/cure are good or useful objectives.&#34;It&#39;s just silly to be told that I don&#39;t understand the need for the research because I&#39;m not &#34;severe&#34; enough, while the same people try to get me to donate my cheek swabs, brain tissue, and time.&#34;Really, what these researchers want is subjects that don&#39;t require any special effort to get data from, but who also won&#39;t talk back or have opinions about goals and values.&#34;Miss me with that. #LDTChat&#34; @slooterman&#34;Often the most ugly research is perpetrated on people with LDs though, eg the proposed ECT study which is only recruiting people under guardianship (presumably because they know no one would ever knowingly consent)&#34; @24shaz&#34;Yes. I also suspect that, beyond funding distribution, this is one reason studies are still disproportionately focused on children. Children don&#39;t really get to make their own decisions, whether they have ID/LD or not.&#34; @slooterman&#34;Aye, indeed.&#34; @24shaz&#34;The same critique can be made of people who seek perspectives of #ActuallyAutistic people on Twitter. These surveys are self selecting if the input of parents is not welcome and valued.&#34; @EricNJager&#34;This would be a legitimate argument if Twitter actually mattered in any substantive, material way. Policy gets set by research, not internet opinions. Just block people you don’t want to listen to and move on with your life.&#34; @slooterman&#34;This is a good point. I CONSTANTLY see people pushing back against autistic adults by saying they &#39;aren&#39;t really autistic&#39; and &#39;they can&#39;t understand because THEIR child is sooo severely autistic, it&#39;s totally different.&#39; yet they&#39;re not even...studying what would work for them?&#34; @laurawritesit﻿

&#34;These barriers often not fault of researcher.&#34;Also research governance. Allowing staff time to participate in research. Not all about funding but that is a big issue too as Ginny Russell states.&#34;Most research in US some in UK. Both have higher diagnostic rates and thus lower percentages of those with LD. Global estimate thus fairly meaningless.&#34; @milton_damian

And there isn't that research on them that there really needs to be in order for the health service and social care to actually put in place the services they desperately need". #LDTchat

&#34;not at all sure they’ve been deliberately excluded per se; it’s just when constructing research questions the parameters tested have to be very defined. #Autism as a thing in itself exists; linking with #learningdisability adds in more variables which might not be the focus&#34;The bigger question is why There is a huge lack of research in &amp; around #learningdisability in many contexts inc #autism. Applied Research supposedly giving insights re autistic spectrum may even be meaningless when you add in other disabilities?&#34; @MaryOToole10&#34;This is more about inflexibility of practice.&#34; @milton_damian

&#34;#LDTChat Am not free later on, but just to say that the #MentalCapacity Act 2005 has an impact on research participation.&#34;I&#39;ve published on what this means for #autism research here. I&#39;ll put a pre-pub. copy on my website (http://voicespaces.co.uk) later: https://t.co/qz9FF1jPj3?amp=1&#34; @LoomesGill

To begin... How can being underrepresented in autism research impact the care that autistic people with learning disabilities receive? #LDTchat

&#34;To fund something you want to check it is ‘working’ so if you can’t get research to back your findings then founders won’t support. But what about those who have no voice and can’t communicate their needs? Does that mean no research means no funding and therefore no results?&#34; @GwynneMiriam

&#34;could argue that public £££ behind most #research Shd be directed at #autism with #learningdisability as the ‘condition’ has the greatest detrimental impact there? a distinction between scientific interest #autism as brain condition &amp; research needed re social impact it it?&#34;&#34;#LearningDisability research underrep everywhere; absent from very top academia apart from (non #LearningDisability) Autism at #Cambridge ( some bits elsewhere inc #Lancaster )needs to be a specialist dept at #oxbridge? #justsayin ( @sarasiobhan ?) Most research 2nd class imho&#34; @MaryOToole10

&#34;It excludes them from autism-specific services, often implicitly. It prevents LD autistics and their family carers from accessing useful information, many carets will tell you they only get vital legal / benefit information from other carers.&#34; @24shaz

#LDTchat on people with learning disabilities being excluded from autism research

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