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Neurodiversity: A Balanced Opinion

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By Nick Dubin, PsyD
Autism Asperger’s Digest
| Online Article

Over the past decade, a fortuitous series of events have occurred that have spurred a “movement in the making.” The movement is commonly referred to as ”neurodiversity” and has been birthed in the same spirit as the civil rights movement of the 1960’s or any other campaign seeking equal rights for its members. In this case, “members” are individuals with Asperger’s Syndrome and other forms of autism who do not wish to be “cured” of their neurological conditions, which they view not as deficiencies, but differences. Information processing differences. Thinking differences. Learning differences. Social functioning differences. And, while it is consummately appro pro that computer technology became the communication hub of this movement, it was various individuals on the autism spectrum suddenly gaining notoriety that contributed to its voice taking shape. These individuals found forums for their ideas at state and national autism conferences, they began writing books, they launched self-advocacy groups, such as ASAN (Autism Self Advocacy Network) and GRASP (Global Regional Asperger Syndrome Partnership). They coined the term “Aspies” to identify themselves apart from their neurologically typical (“NT”) counterparts. And they all united in an effort to make their individual and collective voices heard.

The success of such a movement always requires societal change, and this level of change does not happen overnight. Nor does it take place without confusion, misunderstanding, anger and “sides” forming. One side views autism disorders as a problem to be eradicated in an individual, something to fix, a condition that begs a cure. The other side thinks what should be “cured” is societal intolerance towards individuals with differences in brain functioning. This movement has had and continues to experience its growing pains as people with and without Asperger’s and other forms of autism react to ideas that challenge their status quo thinking. Notwithstanding the difficulties, the movement is gaining momentum as more and more individuals are diagnosed on the autism/AS spectrum.

The Philosophy of Neurodiversity

Though there is no precise date that the neurodiversity movement commenced, much of its spirit can be traced back to a passionate plea by the well-known autistic, Jim Sinclair. In an article he wrote in 1993, “Don’t Mourn for Us,” Sinclair addressed parents of children on the autism spectrum who he felt were being insensitive to how their negative words impacted their children. He wisely recognized that many autistics, including those who are largely nonverbal, are sufficiently cognizant and able to comprehend the meaning of these words. He cautioned parents and others not to use negatively charged words that connoted judgments about autistic individuals while in their presence. Sinclair is also praised for his belief that one’s autism cannot be separated from one’s essence or being. What Sinclair did was help to inspire a generation of Aspies and autistic individuals to recognize their own dignity, self-worth and humanity. Today, the neurodiversity movement still embraces Sinclair’s initial vision of having society value the worth of every autistic person, regardless of where they happen to fall on the autism spectrum. The neurodiversity movement is pluralistic and progressive in its emphasis towards a change of societal attitudes with respect to those with different neurological wiring.

Around the time of Sinclair’s initial plea, more individuals on the autism spectrum began espousing a similar vision. Some advocates of the neurodiversity movement include Judy Singer, Kathleen Seidel, Alex Plank, Ari Ne’eman and Michael John Carley, to name but a few. Supporters number in the thousands, and hail from countries around the world.

The name of the neurodiversity movement can be attributed to an Australian mother of a child on the spectrum, Judy Singer (herself diagnosed on the spectrum). Singer’s aim in creating such a term was to do for neurologically different people what feminism and gay rights had done for their respective populations. Singer was prominently featured in New York magazine in a 2008 article about neurodiversity by the famous journalist, Andrew Solomon. Another woman, Kathleen Seidel, (also featured in that article) is an equally eloquent and feisty spokesperson for neurodiversity. She created a well known website bearing the movement’s namesake, which holds a repository of articles on the subject. Seidel’s advocacy talents are many and she has been referred to as the “Erin Brockovich of autism spectrum disorders.” Alex Plank, a strong proponent of the neurodiversity movement, is now famous for his website, Wrongplanet.net – an information site responsible for helping thousands of autistics break out of their shells in cyberspace, meet each other, and take pride in the positive qualities autism brings to their life. The same can be said for Aspies for Freedom, another pro neurodiversity website.

As autism conferences became more easily assessable in cities across theU.S.autistic people started to understand that some amazing individuals existed in the autism community, people who became role models and catalysts for building self-esteem and feelings of self worth. A group mindset began to coalesce as autistics met and socialized with each other at these conferences. These conferences provided them with an opportunity to feel part of a group, possibly for the first time in their lives.

The neurodiversity movement’s biggest push forward has clearly been via a few important self-advocacy organizations launched by and for the Aspie and autistic populations. Ari Ne’eman, founder of the Autistic Self Advocacy Network (ASAN) has been monumentally instrumental in challenging the prevailing notion that autism needs to be cured. For a man in his young 20’s his resume is quite impressive. He has appeared on national television shows, started his own nonprofit organization, produced top-notch public services announcements and met with President Barack Obama and First Lady, Michelle. ASAN has helped countless individuals gain self-respect and basic human dignity and for that Ne’eman deserves a tremendous amount of credit. The same can be said for Michael John Carley whose organization, GRASP, reaches thousands of people each year through their aggressive outreach programs. Many major cities in theUnited Stateshave GRASP chapters where individuals on the spectrum meet and discuss issues of importance in their everyday lives. Carley serves as a true role model for people of all ages on the spectrum. His character and actions exude tolerance and respect and his efforts to serve as a bridge of understanding to those who are not on the spectrum are admirable.

Every story has two sides, and the neurodiversity movement is no exception. Not everyone agrees autistic people shouldn’t be cured, and followers of this camp include autistics as well as parents of children more severely affected by autism. Two notable individuals with autism who blog against neurodiversity are Jake Crosby and Jonathan Mitchell. These two people, along with other opponents of the neurodiversity philosophy, believe neurodiversity undermines the fact that Asperger’s and autism are true disabilities. They present a compelling argument that not all individuals on the autism spectrum are “high functioning” and that many people struggle to just exist within our socially-driven culture. They caution that minimizing the very real difficulties that Asperger’s and autism causes by not recognizing it as a true disability sends not only an inaccurate picture of the vast nature of impairment that exists on the autism spectrum, it limits an individual’s chances at receiving vital services needed, both in school and in the adult world. Opponents to the neurodiversity movement argue that if Asperger’s happens to be just a “difference” rather than a truly disabling condition, what chance do people with Asperger’s actually have in obtaining job support, help with housing or even governmental financial assistance? Neurodiverse supporters counter by saying it is society that needs to learn to recognize and accommodate these differences, without having to label them as being defective or deficient. While I do not think anyone will argue with the fact that autism and Asperger’s produces some disabling consequences for the person who has it, the hotly debated question remains: what responsibility should society shoulder for this being the case?

Neurodiversity and Me

I can state unequivocally that I have been a beneficiary of the vision put forth by neurodiversity. When I was first diagnosed with Asperger’s at the age of 27, I was despondent and terrified. I thought being on the autism spectrum only involved deficiencies and negative traits, and that I would be relegated – without my consent – to a future of things I could never hope to accomplish. After interfacing with several autistic advocacy organizations (I now serve on the board of directors of one such group) my perceptions towards Asperger’s shifted and I began to recognize and own my own strengths. This new perspective gave me the courage to write books and articles about being an adult on the spectrum, produce DVDs, and become a national speaker. My goal? To “give back” to the community who was instrumental in helping me regain my life, and help raise the self-esteem of others on the spectrum.

That I have been able to accept having Asperger’s, and even view it in a positive light, makes me personally reject the need for a cure. First, I believe “curing autism” is an illusory goal, an effort to eradicate something that is not yet even remotely understood or adequately defined. Second, to advocate cure would have increased my shame in having Asperger’s to the point of paralysis. This shame would have robbed me of the courage to take certain risks that have helped me reach my potential as a human being. Since my diagnosis five years ago, I have earned a doctoral degree in Psychology. I attribute much of my recent professional and personal success to the positive qualities that can be attributed to having Asperger’s, such as persistence, determination, curiosity and intense focus. I have come to appreciate these qualities to a great extent because of the neurodiversity movement, as have hundreds of other people on the autism spectrum I’ve met who have also benefited from its positive impact on their lives. Individuals with Asperger’s who would have been isolated a decade ago are now meeting with each other online and in person, at conferences and casual social settings. None of this would have happened without the influence of the neurodiversity movement.

Reaching a Compromise

In theory, there doesn’t seem to be a chink in the armor of neurodiversity’s philosophy. Who would argue with the notion that society should take responsibility for how it treats some of its most vulnerable but creative citizens? Or that people with autism have inherent gifts and should be respected by others?

Although I am opposed to a cure for autism, I do recognize that a parent who is struggling with a child who is physically harming himself, has severe gastrointestinal issues, and is ingesting potentially life-threatening foreign objects would want to do anything in his or her power to help that child. I feel compassion and empathy for the daily struggles these parents and their children face. I know I would feel the exact same way if this were my child.

And that’s where the battle lines seem to be drawn: “High functioning” autistics versus the parents of “low functioning” autistics and various adults on the spectrum who also advocate for a cure. What’s the solution? Is there a solution? Perhaps a common ground exists, one that will reveal itself as we discover more about the condition we now label as “autism” or “Asperger’s Syndrome.” Solomon described the autism spectrum we think we understand in acutely accurate terms: “…which is not a simple range from milder to more severe symptoms but rather a three-dimensional universe of behaviors as challenging to define as the notion of human personality itself.” Perhaps we are just too new to the idea of neurodiversity for both camps to be willing to listen without judgment and compromise enough to achieve peaceful coexistence. If high functioning autistics would take the time to truly empathize with the struggles faced by parents of severely challenged children on the spectrum, and be supportive of them finding treatments to alleviate their children’s physical and emotional suffering, the resentment felt by opponents of the neurodiversity movement might just begin to subside. And if the parents of more severely challenged children with autism could view autism as the diverse spectrum it is – a continuum with vast differences even on the higher-functioning, Asperger’s end – one would hope the resentment Aspies feel would also subside. As Ari Ne’eman, founder of ASAN frequently says, being anti-cure does not mean being anti-progress. A big myth about neurodiversity is that most of its members are against safe and effective treatments for those on the spectrum. Certainly a vocal minority cringes when discussing treatments because they automatically hear the word “cure,” but most don’t feel that way. It is important that this message be amplified!

The neurodiversity movement, along with its opponents, needs to realize that this is not a competition of suffering, nor a battle to be waged until one side is victorious. “High functioning” autistics are not inherently more worthy of consideration nor are they “better” than “lower functioning” autistics. Time and time again we are reminded of the intelligence and human understanding that exists within individuals society so quickly labels as “lower functioning” because of their absence of verbal communication skills. As the self-advocate William Stillman so wisely and frequently reminds us, “Presume intellect.”

We are all in this experience together. And, neurodiversity is not just a movement within autism. It is being embraced by individuals with learning disabilities, ADD/ADHD and other disorders with neurological underpinnings. When we can celebrate diversity in all forms and value each other’s experiences as being equally valid, we will exist as a society that embraces differences, provides needed services, and supports every individual’s right to a self-fulfilled life. We reach that goal by being willing to explore that which sits outside the typical, outside what we label as “normal.” At the heart of the neurodiverity movement is just that exploration – into the vast and yet uncharted world we now call autism.

BIO
Nick Dubin has a doctoral degree in psychology and is the author of two books published by Jessica Kingsley Publishers.

Copyright © Autism Asperger’s Digest. 2011. All Rights Reserved. Distribution via print means prohibited without written permission of publisher.

 

 


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