Position Statement

Neurodiversity

Neurodiversity is both a philosophical stance and a social movement. Parsing the word linguistically implies that neurodiversity refers to the belief that human beings are naturally, normally neurologically diverse and that this diversity has value that should be protected and enabled by society. This is how I choose to use the term.

Neurodiversity is also a social movement that is mostly driven by people with high-functioning autism or Asperger’s diagnoses, who want their particular forms of neurological diversity to be respected and valued. All too frequently, these self-advocacy efforts are perpetrated at the expense of other forms of neurological diversity, including those who are derogatorily referred to as neurotypicals, i.e. people with a “normal” neurology.

I believe that people are naturally, normally neurologically diverse. Our brains and our minds are unique, which means that we are all neurologically diverse. Some of us fall within norms, while some of us fall outside of norms. Most of us fall inside some norms and outside others. Our proximity to norms is not necessarily an indicator of pathology, referring to a diseased or disordered state. Neurological diversity should not be perceived as a form of pathology, but as a form of natural difference.

Autism

Autism is a development disorder diagnosed by psychologists. Autism is also a neurological disorder diagnosed by neurologists. Autism is a poorly understood set of behavioral differences that typically includes deficits in socialization, communication, sensory processing, and executive functioning. These behavioral differences are the result of poorly understood neurological differences that probably have multiple causal pathways. Autism is also a disability, because people with these deficits have significant trouble navigating the social systems that make up our society.

Let my clarify: Aches and pains are common physiological symptoms that have multiple causal pathways. It could the flu. It could be fibromyalgia. It could the aftermath of an overly strenuous workout. It could be a sign of nutritional deficiencies. It could be something far more serious. The symptoms don’t really tell you that much. You need more information—perhaps medical tests—to understand what’s going on.

Research indicates that autism is neurological in nature, meaning that it is the result of something that’s going on in the brain and the neurological differences may be physiological or structural in nature. Yet autism is best understood as a set of behaviors and behavioral treatments, i.e. autism is best understood in psychological, not neurological, terms.

Most of the autism research that I’ve been exposed to has a single, fundamental purpose in mind: Curing autism. This is the purported goal of many researchers. This goal is pursued in a way that requires gaining a better understanding of autism, but understanding autism is a secondary goal—a stepping stone, if you will, to the primary goal of curing it.

I believe this goal is problematic on two counts. One is logical: How can we logically justify developing a goal regarding something that we don’t actually understand? One is ethical: How can we morally and ethically justify changing someone’s brain in order to make them more acceptable in society, when that change will almost certainly change who the people are?

I believe science should seek to understand autism before deciding what to do about it. I believe society should treat people with autism as people, and put their rights and well-being as people above the societal concern for a standardized norm. In other words, I don’t think society has the right to cure people with autism of their autism; furthermore, I believe society has the responsibility to accommodate people with autism (and other forms of disability) so they can participate in society.

Epilepsy

Someone who has epilepsy is neurologically diverse. In order to cure epilepsy, we would have to affect the person’s brain. In these cursory ways, epilepsy is exactly like autism. So, why is it that I’m not against researching a cure for epilepsy?

Simply put, epilepsy involves having seizures. These seizures are uncomfortable, even painful, and they’re definitely debilitating. Seizures can cause brain damage. A seizure at the wrong moment could cause death. Uncontrolled seizures could result in death. These are all good reasons to support this kind of research.

But there are other also reasons that are more subtle. For one, people with epilepsy can undergo their own personality changes, indicating that epilepsy itself changes who the person is and that the cure would, hopefully, restore them to their “normal for them” selves. Furthermore, the goal of epilepsy is not to make the person more acceptable to society (which the re-phrased goal claimed by certain autism research organizations), but to give people with epilepsy more control over their own bodies.

My son was diagnosed with epilepsy. We were lucky to find a medication that controls his seizures completely. We were lucky that, before his seizures were controlled, he was only having a few petite mal seizures a day. We were lucky that he only had one grand mal seizure. Many people aren’t so lucky. Many people live with daily seizures. Some people live with 20 or more seizures a day.

I believe it is important to treat epilepsy without changing the person’s fundamental identity. I also believe there are necessary sacrifices when controlling seizures, which may involve side-effects of medications or medical procedures. Sometimes controlling the seizure is worth more than what is lost by attaining that control. It’s a choice and it should be considered carefully.

With that said, our society still has an obligation to give people with epilepsy the opportunity to go to school, to go to work, and to go out in the community. We need to be more sensitive to potential triggers, like strobe lights, and we need to be more aware of what people with epilepsy can do than we are of what we think they can’t do. People with epilepsy still benefit from social interventions, not just medical interventions. Social interventions continue to be my focus.

Bi-Polar

Autism and epilepsy are examples of neurological differences that are clearly (or becoming so) the purview of neurologists, not psychologists. Bi-polar disorder (also known as manic-depression) is still regarded as a psychological condition, and therefore subject to counseling, psycho-pharmaceutical treatments, and even institutionalization in psych wards. Furthermore, bi-polar disorder is one of those psychological conditions that are used to justify an erosion of rights in the name of public safety.

As the wife of a man diagnosed with bi-polar disorder, I can tell you that the emotional impact of this neurological difference can be very challenging for the people around the individual. More importantly, the emotional impact of this neurological difference can be very challenging for the individual. Chronic depression or chronic mania, with forays into the other side, can wreak havoc in one’s life and takes an exceptionally hard toll on one’s emotional state.

And yet it’s equally clear that the way someone with bi-polar disorder thinks is substantially different than people without bi-polar disorder. Bi-polar disorder is associated with creative and intellectual brilliance and has been notably identified in some of the biggest names of human history. At the same time, there are undoubtedly many people with bi-polar disorder who have brilliant minds, but have not made their marks on human history due to their difficulty coping with their emotional swings. Furthermore, people with bi-polar disorder face significant challenges assimilating into their cultures. This stifles opportunities to put their brilliant minds to use in the public arena.

On the one hand, I strongly advocate for accommodations and acceptance for people with bi-polar disorder—as they are, for who they are, whether they are exceptionally brilliant or not. The simple fact is that, despite our best efforts, counseling and psycho-pharmaceutical treatments can only mitigate and/or control symptoms temporarily, often with significant side effects. While I support research to help people cope with the emotional swings and interventions to help people adapt to social demands, the fact is that we really don’t know how to do this. We especially need to discover ways to do this without losing the neurological brilliance that may come with this disorder, namely not drugging people into a stupor in order to control their behaviors for the sake of social convenience. Instead of tolerating our own social and scientific failings at their expense, we need to accommodate and include people with emotional challenges and help facilitate their participation in our society.

Depression

Simply put, depression sucks. Whether the depression relates to bi-polar disorder or chronic depression without any other emotional or neurological differences, depression is an emotional (i.e. psychological) disorder that saps the joy from people’s lives and interferes with daily living. Depression is physically and emotionally draining. Like bi-polar disorder, we don’t know how to treat it effectively over the long-term.

Like all of the above, supports and accommodations could go a long way to alleviating the negative impact of depression. Unlike most of the above, there doesn’t seem to be a neurological upside to depression. Like autism, depression almost certainly has multiple causes and multiple explanations, as well as different avenues of treatment and different pros and cons for those treatment options depending on the nature of the depression.

In short, since we cannot treat depression effectively, we have an obligation to accommodate and include people with depression as they are for who they are. Furthermore, science needs to assume less that depression is one thing and research depression based on differing factors. Like bi-polar disorder, psycho-pharmaceutical treatments are inadequate and come with significant side effects. There has to be a better solution.

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