In recent years, a growing number of autistic people have begun to demand a more active role in the public policy, research, service-delivery and media discussions that impact our lives. As the national conversation about autism has increased in tone and fervor, we who are the targets of this discussion have not been consulted. To those who believe in the motto of the disability rights movement — "Nothing About Us, Without Us!" — this situation has to change. Sadly, the traditional autism community has been driven by a set of priorities different from our own. Led almost exclusively by those not on the autism spectrum, it has made harmful decisions without our input. In response, this new autistic community has behaved very differently, a fact that now manifest itself in many ways. From a growing number of self-advocate run autistic social and support groups popping up across the country to larger autistic-run and mostly autistic-attended conferences like Autreat and Autscape, self-advocacy is on the rise. In some respects, new online technologies have assisted the development of this community, as nonverbal communication and geographic distance become less relevant in the world of the Internet. In other respects, however, the rise of the autistic community has been the natural result of increased awareness and diagnosis, leading to more and more autistic adults who are ready to come together to ask, "Where do we go from here?"

Advocacy has always been a big part of the autism world, and the autistic community is no different. As the founder of a prominent autistic-run organization, the Autistic Self-Advocacy Network, I have had the pleasure of overseeing extensive efforts to increase the representation of autistic people in the policymaking, research, service-delivery and media about our lives. From working to promote the inclusion of autistic people on policymaking bodies and task forces to passing state-level legislation on issues such as community integration, bullying prevention, disability history, first responder training, adult supports and other issues, the Autistic Self Advocacy Network has played an active role in the rise in influence of the autistic community. Furthermore, through our partnership with the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), 2 we are laying the groundwork for a new kind of autism research paradigm, which includes autistic people as full partners in the creation and implementation of rigorous studies on issues relating to the quality of life of autistic people. Yet, at the same time as our community has increased in relevance and influence, we have also come into conflict with more traditional autism groups on how we should approach autism advocacy and public representation of the autism spectrum. It is our belief that the traditional priorities of autism advocacy, which focus on eliminating the autism spectrum rather than pursuing quality of life, communication, and inclusion for all autistic people, need to be reset. In this essay, I shall attempt to lay out a framework for where we need to go — and what has kept us from getting there to date.

The object of autism advocacy should not be a world without autistic people — it should be a world in which autistic people can enjoy the same rights, opportunities and quality of life as any of our neurotypical peers. These words, counterintuitive though they may be to many in the autism community, represent the future that we must guide ourselves toward. In the past decade, more and more of the autism discussion has been taken up by a focus on causation research, with little to no practical implications for the lives of autistic people, even as our population has been left behind by the progress that much of the rest of the disability community has enjoyed from a vigorous civil and human rights-oriented agenda. Existing service-provision systems are doing a poor job of serving the unique needs of autistic adults in crucial fields such as employment, community living supports, transportation, disability discrimination and rights protection. Our public school system is rampant with violence and abuse against students with disabilities, with students on the spectrum subject to a particularly high risk of injury and even death (National Disability Rights Network 2009). Crucial barometers of inclusion with respect to community living and access to the general education curriculum show that to be on the autism spectrum is to be left out of many of the most important innovations of the disability rights movement of the last 20 years.

As all this has occurred, what has the response of large portions of the autism community been? By and large, one of discredited theories about vaccines, pseudoscientific treatments, and the rhetoric of pity and despair. Even a cursory glance at the magazine of the Autism Society of America reveals many such examples, with advertisements for vaccine recovery and Applied Behavioral Analysis, whose initial aversive-heavy experiments claimed to bring half of all children subjected to its methods to "indistinguishability from peers." These programs lack the research foundation they claim. For example, Ivar Lovaas' promise of recovery through ABA was based on the theory and methods used with "feminine boys" at-risk for homosexuality (Rekers & Lovaas 1974). That fact alone should give anyone pause. Meanwhile, those who peddle these pseudo-scientific treatments collect hundreds of thousands of un-reimbursable dollars from families justifiably desperate for a way to secure opportunities for their children.

Curing Autism vs. Improving Quality of Life

What do we really want? Is it autism prevention? Given that research has shown that the autism spectrum is predominantly genetic in origin, the most likely form of prevention would be that of eugenic abortion, similar to what we have seen with the 92 percent rate of selective abortion in the Down syndrome community (Mansfield, et. Al. 1998). Surely, there are considerable ethical problems with this course of action. Do we want normalcy, the "indistinguishability from peers," that Lovaas-style ABA promises? Or is that just a proxy for the more tangible things people desire, like the ability to communicate or the chance to hold a job and live in the community? Most of us on the autism spectrum do not wake up in the morning and wish that we had never been born. Insofar as we desire normalcy, it tends to be as a mechanism for achieving the things we cannot access in our lives due to lack of support, inaccessible environments — social and otherwise — and education and medical systems that are not responsive to our needs. It is without a doubt true that autistic people across the lifespan face much more difficulty in many spheres of life. Yet, at the same time, the autism spectrum is inclusive of more than a series of impairments; many of the traits we possess can be, in the proper contexts, strengths or at least neutral attributes. For many of us, the prospect of cure and normalization denies essential aspects of our identity. The autism spectrum is defined as "pervasive" for a reason; while it does not represent the totality of what makes us who we are, it is indeed a significant part of us, and to pursue normalization instead of quality of life forces us into a struggle against ourselves. Recent research reveals what many of us are already aware of — that autistic people possess distinct strengths with respect to rational as opposed to intuitive decision-making and systematic, categorization-oriented thinking (De Martino, Harrison, Knafo, Bird & Dolan 2008). A focus on autism elimination instead of more targeted efforts to address specific obstacles to quality of life, be they social, medical or otherwise, ignores these strengths. To quote Simon Baron-Cohen, internationally renowned autism researcher, on the issue of prenatal testing and cure: "What if such a treatment reduced…[a] baby's future ability to attend to details, and to understand systematic information like math? Caution is needed before scientists embrace prenatal testing so that we do not inadvertently repeat the history of eugenics or inadvertently 'cure' not just autism but the associated talents that are not in need of treatment" (Baron-Cohen 2009). It should be stressed: none of this is meant to deny the very real fact that autism is a disability. It is only to point out that disability is as much a social as a medical phenomenon and that the "cure" approach is not the best way forward for securing people's quality of life.

The Concept of Recovery

The oft-cited concept of "recovery" from autism is not only scientifically unsupported but also dangerous in that it removes the very supports that made progress possible for many people with autism. Moreover, by equating developmental progress with a change in the fundamental character of our brains, the recovery concept denies the natural growth and skill acquisition that occurs for all individuals, regardless of disability. It is unreasonable to assume that autistics will be the same at age 30 as at age 3. The claim that addressing the challenges and behavioral difficulties associated with the autism spectrum can result in a fundamental re-wiring of a person's brain, to the point that he or she is no longer autistic, is ridiculous. Proponents of a "recovery"-oriented philosophy ignore the myriad coping strategies and mitigating measures that many of us use in order to be successful. When a person is suddenly deemed "recovered," he or she may lose access to the very strategies and measures that allowed for progress in the first place. Families fighting school districts that attempt to justify the removal of crucial IEP services, based on a child's progress that these services made possible, are intimately familiar with this dilemma. The disability community at large struggled with this sort of perverse reasoning after numerous judicial decisions narrowed the definition of disability under the ADA, depriving those who have found ways to compensate and improve their ability to function through accommodations. Congress addressed this problem by passing the ADA Amendments Act at the behest of a broad array of disability advocacy groups (including the Autistic Self Advocacy Network). This legislation mandated that mitigating measures such as medications, assistive technology or "learned behavioral or adaptive neurological modifications" not be considered in determining whether a person has a disability under the ADA. This act recognizes the fallacy of the recovery model with respect to disability.

Addressing our Challenges

That many of us need additional support in order to accomplish the same things as neurotypicals should not invalidate the legitimacy of our existences; no human being has been entirely independent since our hunter-gatherer days. The majority of us don't farm or hunt and kill our own food. Nor are most of us personally responsible for the construction of our own shelters and modes of transportation. The society around us provides additional support in a wide variety of ways, albeit geared mostly towards the needs of the typical majority. The additional difficulty, expense, and challenge associated with securing necessary support for those of us who diverge from that majority stems from the reality that we live in a world that is geared only to a particular kind of person. As with previous civil rights movements regarding race religion, gender, and sexual orientation, we need an autism and disability advocacy that aims to change our society's institutions — from our educational system and places of public accommodation to more specialized infrastructures such as those for long-term care. We need a world that is much more inclusive of a broader range of individuals.

Does this mean that we should not be engaged in trying to ameliorate the many challenges associated with being autistic? Of course not. What it does mean is that, first, we should target our efforts towards the real challenges we face, rather than towards a broader, nebulous concept of "curing" autism that is offensive to many of the people that it aims to benefit. Second, we should in every instance consider the fact that it is often social barriers rather than disability itself that pose the problems we face. When a person faces anxiety, let us look for a method to address that challenge — but while the answer may end up being a medication or other medical solution, for many facing this challenge, social rather than medical approaches may be more effective. If the anxiety stems from trouble interacting with peers, the solution may well be education that is responsive to the social as well as academic difficulties autistics face. Often the environments in which we educate our children tend to tease and bully someone for having a different kind of mind, which is as wrong as oppressing someone having a different color skin. The same goes for problematic behavior, which for many nonspeaking autistic people is one of the only forms of communication available. By providing people with the education, assistive technology or other tools necessary to empower communication, these difficulties may be largely alleviated. Beyond that, when addressing other autistic traits such as categorization and sequencing behavior, lack of eye contact and a departure from social norms, we should give serious thought as to whether the problem lies with the behavior itself or the social stigma that surrounds it. If it is the latter, the path of previous civil rights struggles to broaden the scope of acceptable attributes may represent a more ethical solution.

In many instances, the answers are not yet apparent for us, particularly in realms like communication, which poses one of the most pressing and important areas of challenge for our community. However, our existing autism advocacy and research agendas have not placed finding solutions to these issues high on their agendas, preferring to focus on environmental or genetic research aimed at providing for "cure" or "recovery," If we make the effort, we are likely to find ourselves surprised by what a true civil rights struggle will yield for us. Only a few short decades ago, it was assumed that three out of every four autistic people had a co-existing intellectual disability (mental retardation was the term at that time) and that autism was caused by "refrigerator mothers." Today, we know that neither is the case, in part because of those individuals and groups whose priorities have been responsive to the true needs of autistic individuals. At one point, it was assumed that the inevitable future for the vast majority of people with developmental disabilities was institutionalization. Today, we have new legal and social services infrastructures that are creating a new reality oriented around community living supports. If we set as our goal the full realizations of rights, opportunities, and quality of life for all autistic people regardless of age, ability or place in life, and if we then follow up with vigorous advocacy and research, we will no doubt face future pleasant surprises as well. It is only by undertaking this as our priority that we can succeed in creating a world that accepts and supports neurological diversity just as it has come to accept and support a wide array of other diversities across our society.

Autism Heroes

Finally, we need to recognize that there has been a problem with our old guides. The heroes that have been put forward to the autism community have not measured up to their billing. Better ones are available. Should we admire Bernie Rimland, who mocked community integration as a pipedream and peddled a steady diet of quack cures to desperate parents forced to shell out thousands? Should we admire Jenny McCarthy, who has tried to revitalize a sagging career by plunging the autism community further into a discredited obsession with vaccines? Should we continue to support Autism Speaks, which uses corporate and celebrity influence to milk dry the autism community while returning only a tiny fraction of the money it raises for services in the communities from which it was raised?

Better exemplars exist, such as Justin Dart, who laid out and fought for a dream of inclusion for people with disabilities that led to the Americans with Disabilities Act. Let us instead turn to people like Judy Heumann, who fought discrimination against those who would sideline her because of her disability, and eventually rose to become Assistant Secretary for Special Education in the Clinton Administration, or Ed Roberts, who fought discrimination to get equal access to a college education, and then created a network of over 400 Centers for Independent Living (CILs) across the nation. It is a stark and clear choice — between pity, quackery and financial exploitation and civil rights advocacy, hope, and the prospect that disability and quality of life don't have to be mutually exclusive propositions.

The Cure agenda has failed us, as a goal and as a guiding philosophy. We can do better — we owe it to ourselves and to those for whom we long to build a better future, predicated on the idea that there is more than one way to get what we want and that we don't have to focus on making everyone the same for us all to have a chance to be happy.

Works Cited

  • Baron-Cohen, Simon. "Autism Test 'Could Hit Maths Skills'." BBC News. 7 Jan. 2009. 25 May 2009 < http://news.bbc.co.uk/2/hi/health/7736196.stm>
  • De Martino, Benedetto, Neil A. Harrison, Steven Knafo, Geoff Bird, and Raymond J. Dolan. "Explaining Enhanced Logical Consistency During Decision Making in Autism." Journal of Neuroscience 28.42 (2008): 10746-10750.
  • Mansfield, Caroline, Suellen Hopfer, and Theresa M. Marteau. "Termination Rates After Prenatal Diagnosis of Down Syndrome, Spina bifida, Anencephaly, and Turner and Klinefelter Syndromes: A Systematic Literature Review." Prenatal Diagnosis 19.9 (1999): 808-812.
  • Reikers, George A., and O. Ivar Lovaas. "Behavioral Treatments of Deviant Sex- Role Behaviors in a Male Child." Journal of Applied Behavioral Analysis 7.2 (1974): 173-190.
  • School is not Supposed to Hurt: An Investigative Report on Restraint and Seclusion in Schools. Washington, DC: National Disability Rights Network, 2009. Print.

Endnotes

  1. This piece was solicited by The Advocate, which then declined to publish it.


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  2. http://www.aaspireproject.org
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Copyright (c) 2010 Ari Ne'eman



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