Who Autism Research Leaves Out

7 minute read
Srinivasan is a Ph.D. Neuroscience Student at Vanderbilt, an alum of UC Berkeley, a PD Soros Fellow, a Public Voices Fellow of The OpEd Project, a Fellow at the Frist Center for Autism and Innovation, a non-federal member of NIH’s Interagency Autism Coordinating Committee, and on the boards/advisory boards of DREDF, ASAN, ASA, INSAR, Duke U’s ACE and The Brain Foundation

Growing up, I had always wondered if I had received the correct autism diagnosis. I was diagnosed with autism and ADHD at age 3, and for the amount of “evidence-based therapy for autism” that has consumed my entire childhood, I should have been able to navigate it many times over by now. Why was I not benefiting from the vast amount of research that is being done in the name of understanding autism better? After all, autism has been an official diagnosis since 1980.

My autism is still very visible as an adult, and my disability challenges do present significant obstacles in navigating everyday living. I am often described as a minimal speaking autistic with high support needs. But that does not even begin to describe my autism. I’ll admit that even I have not fully understood my own disability issues.

Read More: We Don't Need a Cure for Autism. We Need to Make Living With It Easier

For instance, my ability to speak can fluctuate on a daily basis. I have a lot of somatosensory and sensorimotor dysregulation challenges, OCD, mood regulation issues, social anxiety, and allergies—with of course a good dollop of that official ADHD on the side. But if I have not fully understood my own disability, it is, in part, because there has been little research to help autistics like me understand the full scope of it, as well as targeted education, medical, or therapeutic interventions that can help us navigate it.

This reality became glaringly evident during my recent attendance at meetings as a PhD neuroscience student and aspiring autism researcher. At a research meeting on autism that involved both autism researchers and stakeholders, an adult autistic individual shared her involvement in numerous autism studies throughout her life. This, in itself, contrasts with many autistics like me who are excluded from autism research due to the complexity of our issues, or because of the research methods used.  

Just as psychology research had its WEIRD (“western, educated, industrialized, rich and democratic”) sampling bias, autism research has not only a WEIRD sampling bias, but also has essentially oversampled the same, narrow band of what are considered the easily “researchable autistics,” and expected those findings (as well as the applications and interventions that resulted from them) to apply to everyone.

But the spectrum is far more diverse and heterogeneous than we realize. Sure enough, even as I review past autism research as part of my studies, I look at the autistic participant profiles and the truth is that a majority don’t represent autistics like me. Autism research participant selection is filled with implicit and explicit exclusionary criteria, such as IQ cut-offs, ability to be able to sit still, to perform tasks and engage, to respond orally and not have co-occurring or complex conditions. But why should IQ be an exclusionary criterion when it is mutable and has been historically problematic for marginalized groups? I have to then wonder how findings from studies with so many exclusionary criteria would benefit autistics like me.

Research participant selection bias is especially problematic in a disability like autism because the primary goal of research is to provide explanations. Studies also influence policy priorities, interventions, treatments, who gets access to funding, access to spaces, and even societal attitudes. Most importantly, research leads us to applications and solutions. If we are left out of research, we are left out of the solutions as well. 

It reminds me of a high school speech therapist who insisted I must be a literal thinker—as are apparently all autistics, her opinions being shaped by the research she had consumed. But how did this line up with my love of philosophy, for instance, which is very much abstract and heavily nuanced? Or of all the autistics who are poets and painters, for surely art involves a lot of imagination and abstraction. Inevitably, the teaching strategies and therapy for a literal thinker autistic would be different from the needs of a non-literal autistic. Of course, as a child you don’t have the power to challenge the “expert,” and you are left with a feeling of cognitive dissonance and mismatch that this is not quite right. 

Yet, willy-nilly, existing autism research findings, and the resultant therapies and educational strategies, have been applied across the board to all autistics. Unfortunately, a lack of success in therapies not suited for you in the first place, leads to negative downstream impacts such as being placed in low expectations classrooms, the closure of opportunities, and less than positive lifetime outcomes. I find that despite all the careers, promotions, and profits being made by thousands of autism-experts, the state of autism interventions right now is one hot mess. In reality, there still are no real “experts” in autism because there is no one-size fits all model.

While there is now acknowledgement of this narrow research bias, it has not permeated the practices of educators, service providers, and medical professionals on the ground. They continue to rely on outdated information with autistics bearing the consequences. However acknowledgement alone is insufficient; we must take action to expand the zone of researchable autistics. Only if we are all represented can we get to all the benefits and solutions of that research.

In order to increase representation of a wider profile of autistics in research, it is crucial to reconsider research methodologies and the tasks involved. Can we devise research tasks and measures that do not depend on good motor skills, the ability to sit perfectly still, fluent oral communication, or lightning-fast reaction times?

Furthermore, we should leverage advancements in Artificial Intelligence and Machine Learning to develop new technologies or repurpose existing ones used in other fields. For instance, why not explore technology that allows for movement for those with autism, similar to neuroimaging equipment used in sports injuries or movement-disorders such as Parkinson's? Could we borrow and adapt from spacesuit technology, which is durable enough to withstand gravitational reentry even while it is able to collect sophisticated biometric data and create sensory modulated environments for its wearer? Brain computer interface is already on its way to becoming non-invasive, and could be adapted for use in autistics with limited speaking ability. Additionally, given that many research tasks require binary yes or no responses, low-tech adaptations like using joysticks instead of a full, distracting keyboard or even 3D-printed covers that hide everything on the keyboard except the two or three keys, can enhance task-oriented studies and minimize distractions.

In addition to rethinking research methodologies and technology, we should explore innovative approaches like mobile labs which increase geographic reach, diversity and accessibility. Think of the participant reach we will have if the research study tasks can be done at or near the autistic participant’s home, instead of someone having to travel to a sterile lab in a university setting. By making research more accessible and accommodating, we also bridge the gap between research and the real-life experiences of autistics, leading to a more comprehensive and culturally sensitive understanding of its diverse forms.

It’s time for researchers and technologists to rethink their methodologies and technologies, and explore other innovative approaches to give all members of the autistic community the care we need. If genuine progress in autism research and the development of real solutions are to be achieved, we must expand the zone of the researchable autistic. With such a shift in mindset, we can tap into the full potential of autism research and unlock the benefits and solutions that have eluded us thus far.

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