Speaking and Listening:  
Establishing the Need for a Constructive Dialogue With Autism Speaks

 

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Preface:  Nov 07, 2011   - My Stance on Autism Speaks

Many people mistakenly believe that I fully endorse Autism Speaks and believe that they have done no wrong. This is not true. I believe they have done many wonderful things and made many mistakes. I do not excuse their wrongdoing, nor do I dismiss the positive things they have done. 

However, I do think it is important for us to not only criticize, but also voice approval when they make positive choices. They will respond to good press, and continue doing things which bring respect and accolades. 

They are making changes. They are sponsoring Autism Talk TV, and if you watch episode 17 you will see that they are hiring autistic individuals for important positions. 

They are funding Advancing Futures for Adults With Autism. They hired me to write an article about Hacking Autism, flew me out to San Francisco, and paid for my time and all my expenses. Why? Because they wanted the autistic perspective. Does it benefit them financially? Sure, they would be fools to consider making choices that would cause them to lose funding. 

They have supported me, helped me acquire a book contract, and given me a large platform on their website to speak freely. They have not censored me. 

I see no harm in recognizing these positive steps. I also see no harm in criticizing them if they screw up. 

 
 

I wrote this article prior to my interview with Dana Marmane, VP at Autism Speaks. My viewpoints have not changed since it was published. Paranoia, hostility, and name-calling only give this organization more press and make autistics look bad.  

Speaking and Listening: 
Establishing the Need for a Constructive Dialogue With Autism Speaks 

By John Scott Holman 

Author’s Note: I wish neither to endorse nor oppose Autism Speaks through future publication of an interview with Dana Marnane, Vice President, Awareness and Events, Autism Speaks. I aspire only to begin a dialogue with a powerful organization in an effort to benefit autistic self-advocacy. 


“She was beginning to understand that evil is not absolute, and that good is often an occasion more than a condition.” 
– Gilbert Parker, “Pierre and his People” 


“The activist is not the man who says the river is dirty. The activist is the man who cleans up the river.”   
- Ross Perot 

Autism Speaks – its voice is undeniably powerful. But is this organization a force for good or evil; are they an ally or an enemy? Is it that simple? 

Despite the efforts of many, Autism Speaks has not crumbled. At what point do we admit the futility of relentless defiance, and focus on creating a constructive dialogue? If we dismiss Autism Speaks entirely, we do ourselves a tremendous disservice, because we lose the opportunity to approach and challenge an organization with enormous resources.  Will Autism Speaks listen? Will we? 

The question is not, “Who is the enemy?” The question, rather, is “What is the solution?” 

Autism is not always a curse (as Autism Speaks has often portrayed it), nor is it entirely a cause for celebration. There are extraordinary gifts and enormous difficulties that may accompany autism.  There are those who face tremendous suffering as a result of their autism. Others are fortunate enough to lead happy and successful lives. It seems Autism Speaks is recognizing the complexity of this issue and moving towards a more accurate depiction of autism.  Does this represent genuine progress, or merely superficial damage control? Will this organization take responsibility for its failings, and if so, how might autistic self-advocates respond? 

Autism Speaks has been heavily criticized for perpetuating a negative stereotype of autism in the media in order to generate funding for an autism cure. Yet should we really be concerned that autism will one day be cured? 

"Cure" is a meaningless word in relation to autism, and one heavy with financial ambition. What kind of financial future would Autism Speaks have if it was able to cure the very condition which provides its revenue? The notion of an autism cure is nothing more than snake oil medicine; it is a profitable but empty promise. When the idea of a cure ceases to be profitable, Autism Speaks will cease to promote it. 

Is the genetic causation of autism really so simple that it might one day be identified and eliminated? Or might touches of autism be found throughout humanity’s collective genetic code, making extinction significantly less likely? If autism was scientifically proven to be, as many of us suspect, an instrumental force in human evolution, would society be more or less likely to embrace it? 

There is no more reason to fear a cure than there is to fear the boogeyman; protesting a cure is every bit as silly and futile as promoting one, because a cure can never exist. Treatment and support may result in the gradual removal of an individual’s autistic deficits, but this does not mean the individual is no longer autistic. 
     
Funding for a cure is nothing more than funding for genetic research. The autistic population would doubtlessly benefit if funding was diverted away from genetic research to treatment, support and education. Does this mean, however, that all research into the causes of autism should be opposed? Scientific findings will never remove someone’s autism, but may inspire progress in the treatment of those with debilitating forms of autism. How might unwavering hostility towards autism causation research be beneficial? Let’s face facts; were Autism Speaks and every trace of its influence to vanish from the earth, this research would, nevertheless, continue. 

Though objections to all such research are, inevitably, in vain, self-advocating autistics can still focus on influencing the social application of future scientific findings. When autistic individuals are truly understood and valued by society, there will be no reason to fear genetic research or the possibility of prenatal testing. How can this understanding be spread? By persistently voicing objections to organizations like Autism Speaks? 

Merely attacking Autism Speaks does not promote a greater understanding or acceptance of autism, because no single organization can be held responsible for the failings of an entire society. Autism was misunderstood long before the establishment of Autism Speaks and will continue to be for years to come if all society does not come together in recognition of the value of its autistic community.   


So, shall we dismiss Autism Speaks as evil, or recognize the inflexible fact of its existence and strive to influence the impact it has on the world?   

Autism Speaks is empowered by enormous funding and the voices of many prestigious professionals, scientists, and celebrities; but will Autism Speaks listen to the voice of the autistic community? Will Autism Speaks adopt the voice of that community, and allow autistic individuals to actively participate in the creation of its policies and the disbursement of its funds? Will Autism Speaks channel a greater percentage of funding into areas where autistics need it now? 

How can we know if we do not listen as well?

 

In this groundbreaking interview, Marnane discusses 
Autism Speaks’ controversial past, the possibility of an autism cure, the future of this powerful organization, and more… 

By John Scott Holman 

How many times have members of the autistic community shouted variations of the following questions while waving picket signs? How many keyboards have been attacked by the fingers of enraged autistics hurling such questions into cyberspace? Never before has a representative of Autism Speaks offered so many answers directly to an openly hostile online community. Never… before today. 

John Elder Robison, acclaimed author of “Look Me in the Eye” and “Be Different: Adventures of a Free Range Aspergian,” expressed the necessity of this endeavor, “Autism affects us in many different ways. I feel the pain of being forever an outsider. My son is now going down that same road, as a 21-year-old with Asperger’s. Do I want to develop therapies and tools to help him have a better life? You bet. 

Would I call that a cure? Of course not. I would call that helping him learn to fit in and get by. 

Autism Speaks was founded by parents and grandparents… as the organization has matured, it has begun seeking alternate points of view from folks like you and me… it’s here to stay, and we will all achieve far more if we get together and talk. I invite you to join the conversation.” 

I wish to extend my gratitude to all the members of aspiesforfreedom.com who offered their support and suggestions throughout the undertaking of this venture. You all helped to produce something truly meaningful, the impact of which will not be easily measured. 

I am no one special. I am merely an individual who laid down my picket sign and politely demanded to be heard. Many joined me in this demand. 

We all have a voice, and together our voices are a cry for freedom and equality which cannot be ignored. 

I submitted the following questions to Dana Marnane, who promptly and enthusiastically responded. 


1. How does Autism Speaks account for the large community of self-advocating autistics who oppose their organization? Does Autism Speaks feel this population has misunderstood their message, and if so, what might you say to clarify your intentions? 

A: Autism Speaks’ mission is to improve the lives of people with autism spectrum disorders (ASD) and their families. ASD is a very heterogeneous condition and, thus, the needs of the autism community are diverse. However, a core mission at Autism Speaks is to help each individual and each family address their unique struggles and help each person with ASD live the most productive and meaningful life possible. One person with ASD might define his or her greatest challenge as the need for gainful employment and full acceptance by society, whereas another person with ASD might be most affected by severe, intractable seizures or other disabling medical problems that can often co-exist with an autism diagnosis. We believe that all of these issues deserve research and advocacy. 

One tension that exists is whether basic research on the biology of autism or studies focused on services is more deserving. We believe we need to fund both kinds of research. The basic research, including genetic and other biomedical studies, offers the best hope that we will be able to help the person with seizures or other severe medical problems. Such research may also lead to treatments that improve communication and social skills. When Autism Speaks first began, much of our funding was directed toward basic research. However, over the past few years, we have been balancing this basic research with studies that are developing new service and support programs for people at all points on the autism spectrum. We have also directed more funds toward advocacy efforts and research focused on adults with ASD. Among our six targeted research emphasis areas is a focus on understanding adult development, including issues related to successful outcomes, interventions and supports, and medical issues. As a result of our soliciting these kinds of research proposals, we are funding more and more studies that focus on issues that adults with ASD face as they seek to live fulfilling, independent and productive lives. 

2. Autism Speaks funds the Autism Genome project, described, on autismspeaks.org, as, "the largest study ever conducted to find the genes associated with inherited risk for autism." What specific benefits might this research provide the autistic community? Why might so many autistics oppose such research? 

A: We are working hard to understand the biological basis of autism as this will help us target medical treatments to the individuals who need and want them. We now know that autism isn’t one condition, but rather many conditions with many different causes and biologies. Genes are one way of helping to categorize the different autisms so that treatments can be more effective. For example, some, but not all, people with ASD have sleep problems and, in some cases, it appears to be linked to a gene involved in melatonin production (melatonin regulates our sleep cycle). By identifying individuals with that genetic variation, we can hopefully identify those people who would be most likely to respond to melatonin supplementation. This is just one example, but there are many others like it. Genes are one of the best ways of subtyping and understanding the biology of autism so we can develop interventions that can help people with medical problems, such as sleep and GI problems, seizures, food allergies, and so on. 

3. In 2007, Autism Speaks merged with Cure Autism Now. Does finding an autism cure continue to be one of your organizations primary objectives? Do you believe it is legitimately possible to "cure" autism, and if so, what exactly would such a cure entail? What characteristics would be removed from a cured individual and what characteristics would remain? 

A: Our organization has four main objectives – to raise awareness of autism, fund research into the causes, better diagnosis and more effective treatments of autism, to advocate for families (for instance – insurance coverage for validated treatments) and to providing resources for families such as the transition toolkit for adolescents who are becoming adults, community grants to expand community services, create housing and much more, as well as information on where to get assistance around the country. 

As our mission relates to “cure”, our goal is to reduce suffering associated with autism, in all its forms. Some would call that a cure. Others would call it remediation of disability. For others, it means acceptance and empowerment. 

One of the things that is so challenging about autism is the fact that there’s so much variation in the way autism is expressed in people. Some individuals can have a productive and creative life, and they aren’t looking for a cure. They’re interested in being accepted and getting access to services to help them adapt to the world with their special skills. At the other end, there are individuals severely affected who have significant medical conditions, like GI distress and have never spoken. For those individuals, the prospect of a cure for autism is really important because to that person “cure” means being able to communicate and free of pain. That results in a lot of different perspectives of where our priorities should be. 

4. A growing body of scientific research suggests that we are rapidly nearing the development of an amniocentesis test to detect autism, much like the procedure currently used to detect Down’s syndrome. Does funding provided by Autism Speaks in any way enable the development of such a test? If a prenatal test for autism was developed, does Autism Speaks believe that it should be made available to the public? 

A: Autism Speaks is not funding any research to develop a prenatal test for autism. That is not our goal. The genetic research Autism Speaks has funded is aimed at finding biological causes, as described above. 

5. It has been proposed that Autism, Asperger’s Disorder and Pervasive Developmental Disorder – Not Otherwise Specified, be replaced in the DSM-V by a general category referred to as Autism Spectrum Disorder. How might this be beneficial, and or detrimental, to the autistic community, their families, schools, the clinical practices attempting to improve their quality of life, etc…? 

A: In February, 2010, Autism Speaks published a blog on this very topic at http://blog.autismspeaks.org/2010/02/10/...r-autism/. In that post, we acknowledged that the community would have a wide range of reactions depending on one’s perspective (a recurring theme in this interview!). We pointed out that scientifically, there is no strong scientific rationale for distinguishing among autism, Asperger syndrome, and PDD-NOS. We said at that time that the changes to the DSM, scientifically, make sense. 

However we also acknowledged that people in the community living with autism may have a very different view of the change. In particular, “Many individuals personally identify with the diagnostic label they have been given and grown up with. They may participate in support or advocacy groups that identify with a specific label: for example “Aspies.” Thus, although the scientific and professional communities may institute a change in the diagnostic criteria, many may choose to use the original labels despite the changes in the DSM. And there is nothing wrong with this. In fact, there is precedent for this. For example, “sensory integration disorder” and “nonverbal learning disability” are examples of labels that have been used by the clinical community, but are not specifically part of the DSM. 

One benefit of the change is that it may help increase access to services for those individuals with Asperger Syndrome and PDD-NOS who were previously denied access to autism-related services.” 

Interestingly, the reaction to that blog and other articles was mixed, mirroring the very conflicts across our community. 

6. Hans Asperger said, "It seems that for success in science and art, a dash of autism is essential." Does Autism Speaks believe that certain valuable human characteristics might be lost if autism was to be eradicated from the species? 

A: Autism Speaks does not and never has sought to eradicate autism. We wish to celebrate the valuable human characteristics of autism, as you say, by helping each person with autism use those characteristics in the most successful and rewarding way possible. At the same time, we hope to eliminate the frequent co-occurring medical issues that negatively impact quality of life for many of those on the spectrum. We want compassion for those who need it and help for those who want it. For the individual who cannot communicate – we want to help them find a voice. For the individual who is self-injurious and cannot function, we want to ease that suffering with whatever treatments will help. For those who are self-advocates and just want to be accepted for who they are – we salute you and we would never try to change you. In fact, we desperately need your voice to help bring even more awareness, understanding and compassion to those who are not touched by autism. 

7. How does Autism Speaks feel about speculation that certain important figures in human history, such as Einstein and Mozart, had High Functioning Autism, or Asperger Syndrome? Does Autism Speaks believe that individuals with HFA or AS have greater societal value than those with lower functioning forms of autism? 

A: We believe that everyone with autism has special gifts – it’s up to families and the community to help them discover those qualities. We do not speculate on who may or may not have had Asperger Syndrome in history. 

8. Would someone on the autism spectrum be capable of attaining a well-paid and influential position within Autism Speaks? 

A: Absolutely. We post all open positions on multiple job sites and encourage anyone who meets the qualifications to apply. Autism Speaks does not discriminate in its hiring practices. People with autism are employed at Autism Speaks and are also appointed to several boards and committees, such as the Scientific Advisory Board and Treatment Advisory Board, both of which review and evaluate our research grant proposals. So people on the autism spectrum are shaping what we fund. We also have many family members at Autism Speaks, both as employees and board/committee members. 

9. Many of Autism Speaks’ promotional strategies have been heavily criticized. Are there any specific marketing choices that Autism Speaks has come to regret? If so, what would Autism Speaks say to those who were offended by the way they have chosen to depict autism, and what corrective action is being taken? 

A: We are a young organization and we learn as we grow. Without a doubt we have made mistakes – and to those we may have offended we are truly sorry. We never set out to offend. We are sincerely trying to help all those struggling with ASD. The autism spectrum is just that – a broad spectrum – and we respect that there are many different points of view. What touches someone can offend another. What we ask of this community is to also respect that others don’t think or feel the way they do – that doesn’t mean their opinions and thoughts are wrong. We all need to learn to be respectful and compassionate. 

10. What primary goal does Autism Speaks wish to reach within the next decade? 

A: Like we said earlier, our organization has four main objectives – to raise awareness of autism, fund research into the causes, better diagnosis and more effective treatments of autism, to advocate for families and provide resources for families and individuals. Our main goals moving forward are: 
• Federal legislation to cover autism insurance – in the meantime we will continue going state-to-state. 
• Reauthorization of the Combating Autism Act to provide critical government funds for research and services for autism. 
• Discovering and developing more effective ways of detecting autism and providing effective interventions and supports for people on the spectrum throughout their lifespan. 
• Increasing access to high-quality services and supports for people with ASD throughout the world. 
• Creating a more compassionate world for all those with an autism spectrum disorder.