Knowing Neurons
Neuropolicy Paper Competition 2023Science Policy

Participation of Nonspeaking Students with Autism in Research in Neuroscience

Short Essay by Rachel Falleur

As an undergraduate student majoring in neuroscience, performing and participating in research is a key part of completion of the program. Participation in research and the connections to professors and faculty that are made provide the experience and recommendations that propel students to further their careers. Students can advance to graduate programs and ultimately conduct their own research projects. Unfortunately for students with disabilities such as nonspeaking autism these research opportunities are not as easily accessible. A lack of understanding of the disability and how to accommodate nonspeaking autistic students in the laboratory are impediments that limit participation. This type of exclusion also limits the perspectives and contributions that could be made to research by these students who live with differences in neuromotor abilities, and ultimately results in hindering career paths in neuroscience. To ensure equal representation and participation of students with nonspeaking autism in neuroscience research, new generalized policies for accommodation and inclusion related to communication, motor accommodation, laboratory procedures, and Institutional Review Board applications in the undergraduate university programs are crucial.

The key component in inclusion of nonspeakers… is to create an environment where the appropriate space and time is given for them to contribute.

Most nonspeaking autistic students who are participating in higher education at the level of performing undergraduate research can access augmentative and alternative communication in some format. Participation in post-secondary education requires the necessity of effective communication for all students. This could include technology such as text-to-speech software on a speech generating device or could be as low-tech as a printed letter board. The key component in inclusion of nonspeakers who utilize augmentative and alternative communication is to create an environment where the appropriate space and time is given for them to contribute. Delays caused by taking extra time can be circumvented in faster paced environments by preparing ahead key discussion points, questions, and ideas that need to be decided. This allows the nonspeaker to prepare responses via augmentative and alternative communication (AAC) ahead of meeting times and be prepared to add value to the research environment. Another way to accommodate a nonspeaker in this area is to designate a speaking research partner for them that can communicate messages faster if needed than a text to speech device and can also ensure that the nonspeaker does not miss important communication between researchers in the environment while taking needed time to respond using AAC. Lastly, the accommodation of making the necessary time that it takes the nonspeaker to respond live could be taken, when possible, in the research environment to aldyslow maximum live participation. 

Motor accommodations are equally as essential to the success of inclusion of nonspeaking autistic students in the research environment as communication accommodations. The neuromotor impairments that accompany nonspeaking autism, as well as the somatosensory and sensorimotor dysregulation challenges, can inhibit the student’s ability to fully participate in academic laboratory research. Praxis is generally defined as the ability to conceive of, plan, sequence, and execute novel motor actions. Research shows that people living with autism have significantly less praxis control (Dziuk, et. al, 2007). This whole body dyspraxia contributes to uncoordinated and sometimes unwanted physical movements that are difficult to control. This coupled with the characteristic sensory modulation and regulation challenges that accompany autism can create a motor profile for a nonspeaking autistic student that is unpredictable. This raises safety concerns for those conducting and participating in laboratory research. Accommodation for such motor impairments can be made to allow full inclusion. 

Training and guidance would inform university personnel and equip them to better support nonspeaking autistic students…

Much like a student with the disability of blindness, or quadriplegia, such motor accommodations exist that would allow for nonspeaking autistic students to fully participate in academic research. The coupling of motor deficits with communication difficulties provide further exclusionary factors that prevent higher education professors from exploring the possibilities. Training and guidance would inform university personnel and equip them to better support nonspeaking autistic students specifically in laboratory research. One way to include such students would be using the accommodation of self-directed motor. Using AAC to communicate the correct motor skills to a research partner, the autistic student could inform a partner what skills to perform and have a research partner perform them safely. The nonspeaking autistic student would be able to observe and record information safely. Self-directed motor would allow the student to make individualized hypotheses, perform their own experimentation, and report on results, while protecting themselves and others from the dangers that impulsivity and sensory differences impose on nonspeaking autistic students. 

Accommodation in the educational environment should leave no concern of validity or equal participation on the part of the student. Equity is the goal. Created accommodations should not modify the research tasks in ways that do not provide the nonspeaking autistic student full access to the physical research, full participation in the research analysis, or equal contribution and participation. The undergraduate science programs in today’s universities are competitive and all students want to have a fair chance at graduate studies and proving themselves to professors as well as participating in top notch research. Unfortunately for nonspeaking autistic students implicit bias is already battled in higher education and especially in the science programs. Gaining full access to participating in research as an undergraduate should be the reward of hard-earned academic goals and achievement. 

Students living with neurodiversity have much to offer research pertaining to neuroscience through lived experience and perspective.

Students pursuing careers in neuroscience will also need to conduct research projects for graduate degree programs. Accommodations for interacting with the Institutional review board, breaking through implicit biases, and providing opportunities for nonspeaking autistic students to participate in research at the undergraduate level will inform processes at the graduate level how to be equally as successfully inclusive. Institutional Review Boards can partner with researchers at the undergraduate level to analyze and apply appropriate and effective accommodations that are specified to the laboratory environment. Students living with neurodiversity have much to offer to research pertaining to neuroscience through lived experience and perspective. Through successful implementation of policy changes that include the neurodiverse population of nonspeaking autistic science loving students in research, the field of neuroscience can tap into an unreached realm of knowledge that can propel our research forward to new heights. 

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Written by Rachel Falleur
Edited by Anastasiia Gryshyna

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References

M A Dziuk, J C Gidley Larson, A Apostu, E M Mahone, M B Denckla, S H Mostofsky “Dyspraxia in autism: association with motor, social, and communicative deficits.” Developmental Medicine and Child Neurology. Volume 49, Issue 10. October 2007. Retrieved from: https://doi.org/10.1111/j.1469-8749.2007.00734.x

Author

  • Rachel Falleur

    Rachel “Grace” Falleur is a sophomore undergraduate student at Belmont University in Nashville, TN studying neuroscience, education, and journalism. Her goal is to make pathways for the neurodiverse and disabled population to have careers in science, representation, and input in scientific research. Grace’s research interests include researching the brain/body connection as it pertains to the motor aspects of speech, gross and fine motor control and visual pathways.

Rachel Falleur

Rachel “Grace” Falleur is a sophomore undergraduate student at Belmont University in Nashville, TN studying neuroscience, education, and journalism. Her goal is to make pathways for the neurodiverse and disabled population to have careers in science, representation, and input in scientific research. Grace’s research interests include researching the brain/body connection as it pertains to the motor aspects of speech, gross and fine motor control and visual pathways.