Who Autism Research Leaves Out

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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.

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.

et, 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.

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.

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.

Agree with most of the article research is a mess probably due to science lack of understanding of the brain.

They only completed mapping of the human genome 20 years ago

The genetic map is likely irrelevant. The much more useful information is what they've been getting from brain scans that trace out what parts of the brain are firing in response to what stimuli. That's where the actual information about what treatment and accommodations might be applicable is going to come from. The brain is incredibly adaptable, and knowing what's not firing normally gives a lot of hints about treatment.

Genetic maps are mainly useful in a cure that likely won't ever happen, or at least not for many decades, and it's plausible that we'll have adequate treatment and accommodation decades before that happens.

Timothy syndrome (a fatal condition) usually includes autism
15q11.2 deletion usually includes autism
fragile x syndrome usually includes autism
Angelman syndrome usually includes autism
On and On & On including an unknown number of conditions some genetic others maybe auto immune

To be fair, not all these conditions are convincingly associated with autism. Fragile X may be associated via pleiotropy but Angelman just appears to have the same cough, so to speak.

. Angelman syndrome has a high comorbidity with autism and shares a common genetic basis with some forms of autism

Autism is a symptom of multiple conditions, dozens maybe hundreds, all these conditions converge on a venn diagram to have autism in common.

Timothy syndrome (a fatal condition) usually includes autism
15q11.2 deletion usually includes autism
fragile x syndrome usually includes autism
Angelman syndrome usually includes autism
On and On & On including an unknown number of conditions some genetic others maybe auto immune

You can spend hours finding these neurological conditions, some rare that usually have autism as a symptom.

The problem up to now is they put the cart before the horse trying to create a one size fits all treatment / cure, when the future will be in individual treatments & preventions.

Its like trying to cure coughs in people, someone with lung cancer will not respond to covid treatment & chemotherapy wont do much for a cold or covid.

At the moment much of the time is spent mapping the individual disorders and the genes / causes involved and maybe later develop ways to deal with those

Autism is a symptom of multiple conditions, dozens maybe hundreds, all these conditions converge on a venn diagram to have autism in common.

Timothy syndrome (a fatal condition) usually includes autism

The problem up to now is they put the cart before the horse trying to create a one size fits all treatment / cure, when the future will be in individual treatments & preventions.