Disease or Diversity: Learning from Autism
by Jillybeth Burgado
The following post is part of a special series emerging from Contemporary Issues in Neuroethics, a graduate-level course out of Emory University’s Center for Ethics. Jillybeth is a senior undergraduate double majoring in neuroscience and behavioral biology and religion. She hopes to pursue a PhD in neuroscience after working as a research assistant after graduation.
The idea that variation in behaviors arises through natural differences in our genome was popularized in the 1990s and termed “neurodiversity.” Led in large part by autism spectrum disorder (autism) activists, this movement challenged the established notions of autism as a disease that needed to be eradicated, championing the acceptance of a wide array of neural differences in the population. Rejecting terms such as “normal,” proponents of neurodiversity questioned common messaging and goals of research organizations (e.g. autism is not something that needs to be eradicated or “cured”). In this post, I briefly summarize the neuroethical concerns of ground-breaking neuroscience research, with particular focus on autism diagnostic research. I will then introduce a less well-known movement, Mad Pride, and discuss how we can apply some of the concepts and lessons from the autism and neurodiversity movements to understand and evaluate the claims of those involved with Mad Pride.
Autism is a developmental disorder characterized by challenges with social interactions as well as with verbal and nonverbal communication (Walsh et al., 2011). Importantly, autistic phenotypes are quite diverse, making diagnosing individuals a difficult task. Patients are typically diagnosed by psychiatrists who employ screening tools, such as the Modified Checklist of Autism in Toddler (M-CHAT), and psychological interviews and exams that evaluate the development of speech, social, and intellectual behaviors. However, advances in genetic and neurological understandings of autism may be increasing the room for more biological methods of diagnosis (Pellicano & Stears, 2011). The search for biomarkers that can be used to predict, diagnose or develop treatment and intervention programs has slowly moved forward in the past decade. Genetic variations that may explain susceptibility are an exciting but difficult area of research due to low predictive reliability and generalizability (Walsh et al., 2011). Conversely, brain scans (such as MRI) and electroencephalography (EEG) have proven to be promising techniques in predicting and/or diagnosing autism. In particular, MRI and diagnostic algorithms use structural differences in the brain associated with autism to diagnose individuals, with accuracy ranging from 80 to 90% in some studies (reviewed in Walsh et al., 2011). Similarly, EEG used in infants has been able to predict autism with 80% accuracy (Walsh et al., 2011). In the future, these techniques may be able to replace or supplement long, exhaustive interviews among psychiatrists, children and parents. Furthermore, this research may provide better and more detailed information about the neurological processes of the autistic brain and better therapeutic strategies.
This research is promising but not without significant ethical issues. Many autistic individuals and their families argue that autism is not a disorder or disability, but rather a different way of being. In particular, these advocates remind researchers and doctors that the challenges associated with the disorder are frequently paired with certain strengths, such as focus and perception, strengths that are valued in particular fields and social contexts (Pellicano & Stears, 2011; Walsh et al., 2011; PBS, 2013). More importantly, autistic personalities are viewed as part of a continuum that can eventually fit into society if we allow it to do so. Interestingly, advocates of neurodiversity also lie on a spectrum of perspectives: some individuals value neurobiological research and its interest in providing treatment and therapeutic options whereas others hold the position that autistic individuals should not be changed. The latter position stands at odds with the mission statements of governmental funding agencies. For example, the mission statement for the U.S.’s National Institute of Mental Health (NIMH) states that the organization’s purpose is “to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery, and cure” (NIMH, 2008).
Moreover, the search for biological markers of autism introduces ethical concerns because it is frequently associated with the desire to cure or fix autistic people. Earlier detection of autism is beneficial to individuals and their families because it can allow for better and more efficient treatment options. However, improved diagnostic techniques can also become the foundation for determining and treating what is wrong with the autistic brain, consequently pathologizing autism and distinguishing the normal individual from the autistic one. Importantly, some behavioral components are detrimental to the well-being of an autistic person and cause significant distress. Many argue that these characteristics should be treated by physicians or psychiatrists in order to alleviate the autistic person’s pain. Nonetheless, many autistic characteristics are only detrimental to individuals because of established social norms. If we can decrease these social stigmas and teach acceptance of “different” behaviors, then autistic individuals may be able to become more integrated members of the community. A wide array of other ethical concerns exist in the autism and neurodiversity conversation, including issues regarding preventative methods during pregnancy or early childhood and treatment options and availability (these concerns are not addressed here).
Looking inside the brain has introduced specific ethical concerns that must be addressed by scientists, the general public, and physicians in regards to autism research. For example: What/who should be treated? What is a disorder and what is part of neurodiversity? How should advances in diagnostic methods and treatment be viewed and used by the research community and general public? Should research continue to focus on changing the affected individuals? Here, I propose that these same questions and concerns can also be applied to mental illnesses such as depression, bipolar disorder, and psychosis.
Depression, bipolar, and psychosis, like autism, are not clearly diagnosed using biomarkers and their phenotypes vary greatly in the population. Two individuals diagnosed with depression may experience very different distresses. Recent advances in neuroscience research have opened the possibility for a larger role of neurological methods in predicting, diagnosing, and treating of mental illnesses. Like advocates interested in autism, individuals with mental illnesses have also adopted the neurodiversity movement. For example, Mad Pride, a loosely organized movement in numerous countries, including the US, Canada, Australia and the UK, aims to bring awareness and acceptance of people who in the past or present classify themselves as having a mental illness. Interestingly, some individuals participating in Mad Pride argue that these categories of mental disorders are not disorders at all, rather they represent typical variation in the population. They further assert that some potential strengths are associated with mental illness, such as creativity and new perspectives.
The main question at hand is whether psychiatrists and therapists should attempt to treat, and therefore normalize, those with depression, bipolar disorder, and schizophrenia. The answer to this question will in turn influence how neurological findings are accepted by those diagnosed with mental illnesses as well as affect the way mental illness research is designed and conducted. The Mad Pride movement example provides an interesting and relatively new perspective on the “illness” component of “mental illness,” one that may continue to raise questions about neurodiversity and the distinction between disease and difference.
References:
Pellicano, E., & Stears, M. (2011). Bridging autism, science and society: Moving toward an ethically informed approach to autism research. Autism Research, 271–282. http://doi.org/10.1002/aur.201
Walsh, P., Elsabbagh, M., Bolton, P., & Singh, I. (2011). In search of biomarkers for autism: scientific, social and ethical challenges. Nature Reviews Perspectives, 12: 603-612. Retrieved from http://dx.doi.org/10.1038/nrn3113
Want to cite this post?
Burgado, J. (2015). Disease or Diversity: Learning from Autism. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2015/05/disease-or-diversity-learning-from.html
The following post is part of a special series emerging from Contemporary Issues in Neuroethics, a graduate-level course out of Emory University’s Center for Ethics. Jillybeth is a senior undergraduate double majoring in neuroscience and behavioral biology and religion. She hopes to pursue a PhD in neuroscience after working as a research assistant after graduation.
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| Chipmunka Publishing |
The idea that variation in behaviors arises through natural differences in our genome was popularized in the 1990s and termed “neurodiversity.” Led in large part by autism spectrum disorder (autism) activists, this movement challenged the established notions of autism as a disease that needed to be eradicated, championing the acceptance of a wide array of neural differences in the population. Rejecting terms such as “normal,” proponents of neurodiversity questioned common messaging and goals of research organizations (e.g. autism is not something that needs to be eradicated or “cured”). In this post, I briefly summarize the neuroethical concerns of ground-breaking neuroscience research, with particular focus on autism diagnostic research. I will then introduce a less well-known movement, Mad Pride, and discuss how we can apply some of the concepts and lessons from the autism and neurodiversity movements to understand and evaluate the claims of those involved with Mad Pride.
Autism is a developmental disorder characterized by challenges with social interactions as well as with verbal and nonverbal communication (Walsh et al., 2011). Importantly, autistic phenotypes are quite diverse, making diagnosing individuals a difficult task. Patients are typically diagnosed by psychiatrists who employ screening tools, such as the Modified Checklist of Autism in Toddler (M-CHAT), and psychological interviews and exams that evaluate the development of speech, social, and intellectual behaviors. However, advances in genetic and neurological understandings of autism may be increasing the room for more biological methods of diagnosis (Pellicano & Stears, 2011). The search for biomarkers that can be used to predict, diagnose or develop treatment and intervention programs has slowly moved forward in the past decade. Genetic variations that may explain susceptibility are an exciting but difficult area of research due to low predictive reliability and generalizability (Walsh et al., 2011). Conversely, brain scans (such as MRI) and electroencephalography (EEG) have proven to be promising techniques in predicting and/or diagnosing autism. In particular, MRI and diagnostic algorithms use structural differences in the brain associated with autism to diagnose individuals, with accuracy ranging from 80 to 90% in some studies (reviewed in Walsh et al., 2011). Similarly, EEG used in infants has been able to predict autism with 80% accuracy (Walsh et al., 2011). In the future, these techniques may be able to replace or supplement long, exhaustive interviews among psychiatrists, children and parents. Furthermore, this research may provide better and more detailed information about the neurological processes of the autistic brain and better therapeutic strategies.
This research is promising but not without significant ethical issues. Many autistic individuals and their families argue that autism is not a disorder or disability, but rather a different way of being. In particular, these advocates remind researchers and doctors that the challenges associated with the disorder are frequently paired with certain strengths, such as focus and perception, strengths that are valued in particular fields and social contexts (Pellicano & Stears, 2011; Walsh et al., 2011; PBS, 2013). More importantly, autistic personalities are viewed as part of a continuum that can eventually fit into society if we allow it to do so. Interestingly, advocates of neurodiversity also lie on a spectrum of perspectives: some individuals value neurobiological research and its interest in providing treatment and therapeutic options whereas others hold the position that autistic individuals should not be changed. The latter position stands at odds with the mission statements of governmental funding agencies. For example, the mission statement for the U.S.’s National Institute of Mental Health (NIMH) states that the organization’s purpose is “to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery, and cure” (NIMH, 2008).
Moreover, the search for biological markers of autism introduces ethical concerns because it is frequently associated with the desire to cure or fix autistic people. Earlier detection of autism is beneficial to individuals and their families because it can allow for better and more efficient treatment options. However, improved diagnostic techniques can also become the foundation for determining and treating what is wrong with the autistic brain, consequently pathologizing autism and distinguishing the normal individual from the autistic one. Importantly, some behavioral components are detrimental to the well-being of an autistic person and cause significant distress. Many argue that these characteristics should be treated by physicians or psychiatrists in order to alleviate the autistic person’s pain. Nonetheless, many autistic characteristics are only detrimental to individuals because of established social norms. If we can decrease these social stigmas and teach acceptance of “different” behaviors, then autistic individuals may be able to become more integrated members of the community. A wide array of other ethical concerns exist in the autism and neurodiversity conversation, including issues regarding preventative methods during pregnancy or early childhood and treatment options and availability (these concerns are not addressed here).
Looking inside the brain has introduced specific ethical concerns that must be addressed by scientists, the general public, and physicians in regards to autism research. For example: What/who should be treated? What is a disorder and what is part of neurodiversity? How should advances in diagnostic methods and treatment be viewed and used by the research community and general public? Should research continue to focus on changing the affected individuals? Here, I propose that these same questions and concerns can also be applied to mental illnesses such as depression, bipolar disorder, and psychosis.
Depression, bipolar, and psychosis, like autism, are not clearly diagnosed using biomarkers and their phenotypes vary greatly in the population. Two individuals diagnosed with depression may experience very different distresses. Recent advances in neuroscience research have opened the possibility for a larger role of neurological methods in predicting, diagnosing, and treating of mental illnesses. Like advocates interested in autism, individuals with mental illnesses have also adopted the neurodiversity movement. For example, Mad Pride, a loosely organized movement in numerous countries, including the US, Canada, Australia and the UK, aims to bring awareness and acceptance of people who in the past or present classify themselves as having a mental illness. Interestingly, some individuals participating in Mad Pride argue that these categories of mental disorders are not disorders at all, rather they represent typical variation in the population. They further assert that some potential strengths are associated with mental illness, such as creativity and new perspectives.
The main question at hand is whether psychiatrists and therapists should attempt to treat, and therefore normalize, those with depression, bipolar disorder, and schizophrenia. The answer to this question will in turn influence how neurological findings are accepted by those diagnosed with mental illnesses as well as affect the way mental illness research is designed and conducted. The Mad Pride movement example provides an interesting and relatively new perspective on the “illness” component of “mental illness,” one that may continue to raise questions about neurodiversity and the distinction between disease and difference.
References:
Pellicano, E., & Stears, M. (2011). Bridging autism, science and society: Moving toward an ethically informed approach to autism research. Autism Research, 271–282. http://doi.org/10.1002/aur.201
Walsh, P., Elsabbagh, M., Bolton, P., & Singh, I. (2011). In search of biomarkers for autism: scientific, social and ethical challenges. Nature Reviews Perspectives, 12: 603-612. Retrieved from http://dx.doi.org/10.1038/nrn3113
Want to cite this post?
Burgado, J. (2015). Disease or Diversity: Learning from Autism. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2015/05/disease-or-diversity-learning-from.html
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