Book Review: Can the World Afford Autistic Spectrum Disorder?

In discussing nonverbal communication as it pertains to autism, Digby Tantam, who is a professor at the University of Sheffield in the United Kingdom, postulates that the high level of social connectedness in the modern world has made differences in nonverbal communication both more visible and more disabling. Although the book's title seems rather off-putting in light of the historical use of cost arguments to support eugenics, Tantam promptly explains that he is not referring to monetary costs but instead is giving the word 'afford' its secondary meaning of accommodation. He points out that "many adults with Asperger Syndrome are blocked from being economically productive. Often this is not because they are unwilling, or even unable, to work but because society does not create—'afford'—the opportunity for them to do so."

Tantam discusses characteristics of autism that affect nonverbal communication, such as gaze avoidance and differences of voice and gesture, and how they lead to difficulties in perceiving and interpreting social signals. He points out that communication is a two-way process and that an Autistic person not only misunderstands others as a result of these nonverbal communication issues, but also is misunderstood by others.

Drawing an analogy between our society's complex interactions and the Internet, Tantam speculates that modern humans are linked together in an ongoing web of nonverbal communication, which he calls the 'interbrain,' and that it governs social activity on a subconscious level. In his view, an Autistic person has less connections to the 'interbrain' and thus acquires less of the social information that others seem to pick up through a subliminal process, but also is likely to have more potential for independent and original thought. Because of society's strong emphasis on conformity, the potential contributions of Autistics often have been overlooked.

Much of the disability associated with autism, Tantam opines, is the result of anxiety caused by bullying and excessive social pressure to conform, rather than being an intrinsic part of autism. Observing that "the neurotypical brain is not normal in any but the statistical sense," he suggests that our society needs more "effort and thoughtfulness" in finding effective ways to include and empower its Autistic citizens.

He specifically argues against eugenic attempts to dissuade Autistics from having children, stating that "we should not want to reduce human genetic diversity in this way because society gains, rather than loses, by the neurodiversity that results."

The cover art illustrates this message by arranging blue puzzle pieces to form a plus sign, with one orange piece occupying the central position and fitting there perfectly. There's no mistaking the nonverbal meaning in that image: Autistics should not be seen as puzzling oddities or tragic missing pieces, but as valued members of society. This is a much-needed message in a world that so often struggles to accept diversity.

Huffington Post Welcomes Ari Ne'eman

ASAN President Ari Ne'eman recently was invited to blog at the Huffington Post. His first article, entitled Health Care Reform and the Disability Community, discusses several issues of importance to the disability community that need to be addressed in developing health care reform plans. The first priority should be long-term services and supports, which are necessary to enable many people with disabilities to live in their communities but often are not available because of the institutional bias in Medicaid. Health care disparities are another serious problem requiring more attention and meaningful action. Discrimination has to be stopped in both insurance coverage and the provision of health care.

"With limited resources, Congress will need to make difficult decisions," the article states, "yet discriminating against people with disabilities in the provision of health care services should never be considered an acceptable option."

Readers of the Huffington Post have warmly welcomed Ari Ne'eman with comments that have been overwhelmingly positive. One reader, commenting under the nickname Flavor, complimented the article and then went on to say, "because of your article I went to the [ASAN] site and donated funds to continue for this type of info to continue to be posted for the people to see. Thanks a bunch."

ASAN thanks Flavor, all the people who took the time to read the article and comment on it, and the Huffington Post for being so supportive of our work and of disability rights advocacy!

Newsweek Profiles Ari Ne'eman, Raises Eugenics Issue

In an article on ASAN President Ari Ne'eman, Newsweek reporter Claudia Kalb discusses the potential eugenic implications of genetic research on autism. This is a significant disability rights issue in light of the increasing number of genetic conditions for which prenatal tests have been developed.

ASAN does not oppose genetic research, as the article makes clear. However, ASAN has raised concerns about the lack of adequate ethical safeguards to ensure that such research is conducted for the benefit of, and always with the meaningful involvement of, the Autistic population as stakeholders. A thorough review of current and proposed genetic research is necessary to implement strong ethical standards and administrative rules to prevent such work from being conducted for eugenic purposes.

You can take part in the online discussion by following the link above and posting a comment on the article. Letters to the editor for the online magazine should be sent to webeditors@newsweek.com and, for the US print edition, letters@newsweek.com is the address.

Carol Grigg of ASPIA Responds to ASAN

In a recent petition, ASAN called upon clinical psychologists Tony Attwood and Isabelle Hénault to respond to the concerns of the Autistic and cross-disability community by disassociating themselves from groups that falsely portray Autistic partners and parents as abusive, neglectful, or the cause of depression and other illnesses in their family members. The petition cited as an example the Australian support group ASPIA, which had an article on its website that suggested there was a "potential for abuse" by Autistic adults in family relationships.

Neither Dr. Attwood nor Dr. Hénault has yet shown any willingness to take meaningful action in response to our community's concerns, and we intend to continue our efforts to impress upon them the importance of ending all support for hate groups and damaging stereotypes. However, Carol Grigg, the founder of ASPIA, has written to ASAN expressing her desire to create a more balanced website and stating that she supports the rights of all people to be judged on the basis of their actions and treated equally under the law. She has removed the offending "potential for abuse" article and states that she is in the process of reviewing her links. In addition, she wrote:

I would welcome written information or links to good website resources that provide information from the perspective of Autistic adults in relation to managing relationships and parenting, with a particular focus on the communication difficulties.

ASAN places a high priority on identifying and developing resources for use by counselors and others who seek to promote a constructive and stigma-free approach to improving family relationships, recognizing the need for both partners to share responsibility for communication problems. We hope that ASPIA will work productively with us in this endeavor, and we intend to follow up with further discussion of changes and commitments that we want to see.

We would welcome specific recommendations from the Autistic community regarding helpful resources for positive family counseling and partner support, materials that may still need to be removed from the ASPIA website, and other related issues.

A Conversation about Rights

On Friday, April 17th, 2009, ASAN President Ari Ne'eman delivered the following comments to the National Federation of the Blind's Disability Law Symposium. A recording of the speech is available here on mp3 and a link to the rest of the symposium materials can be found at: http://www.nfb.org/nfb/Law_Symposium.asp


The past half-century has seen a great proliferation in new kinds of conversation about rights. Once primarily relevant in the context of criminal justice and property disputes, rights-based discourses have expanded their scope throughout our society. We have civil rights, human rights, women’s rights, disability rights, immigrant rights, GLBT rights, commercial rights, social rights, privacy rights, animal rights, children’s rights, student rights, parental rights and countless more. Though we may not all agree on the extent or even legitimacy of them, it cannot be disputed that we have broadened our global conception of the role for this concept called rights in our social, legal, economic, policy and societal frameworks. And yet, at the same time as we have updated the role of rights-based conversations in our society, we remain with some very obsolete ideas about where rights come from. This holds us back.

We go out to the world and we tell them in so many ways that it is time for our rights to be realized. We talk about inclusion, we talk about integration, we talk about access, but when we are asked why, our answers are typically phrased in the language of either cost-benefit or desperate need. The one turns our civil rights struggle into a conversation on policy technicalities; the other evokes the very charity-oriented model of disability support that we have been trying to escape. Neither type of response brings the understanding and the knowledge necessary to communicate both the nature and the urgency of our priorities because both talk about rights without talking about where they derive. To legitimize our rights, we have to explain where they are from and so show that they do exist in the ways we talk about.

But where do rights derive? That is the question. The enlightenment political philosophy that our country was based on put forward the idea of a social contract, arrived at by individuals in a state of anarchy, determining to place some of their G-d-given natural rights into a central government for the purpose of securing the remaining ones. This theory carries with it much charm – it fits with our nation’s philosophy of government by the people, for the people, it recognizes and respects rights as inalienable, not temporal whims to be overridden by the first tyrant with a passing fancy. Unfortunately, it is anachronistic and also inaccurate. There has never been a state of nature and our modern ideas of rights go far beyond the negative right protections against government intervention that are all this model allows for. Our community would not be the only one left out by such a limited conception of rights, but we certainly would be one of the first and one of the worst served.

What does that leave us? Where do rights come from? The United States Declaration of Independence says that men are “endowed by their creator with certain unalienable rights”. I believe that to be true – for both men and women, it should be noted. And yet, for our purposes, this does not help us very much. Because the very reason we seek a source for rights in the first place is to help us understand what they are. Barring a theocracy tied to a particular holy text, the belief that rights are divinely inspired does not shed much light on their nature.

You, the people here gathered today, represent some of the most important leaders of a movement devoted to securing and advancing recognition of the rights of a segment of the global population that has been denied them, perhaps more extensively and more pervasively than any other. For generations upon generations the very idea that our population was discriminated against, was deprived of rights was not even on the agenda. Disability was – and in so many senses, still is perceived – as a problem that should be solved by charity and whose persistence could be blamed only on the lack of sufficient humanitarian instincts on the part of the public and the as yet too slow progression of medical science. Disability rights were not on the agenda as far as rights crusaders were concerned – that was a province for those who ministered to the poor unfortunates of the world, the sad accidents, the there but for the grace of G-d go I angels who gave of themselves and found meaning in those tragic burdens.

Then things started to change – not so much with the world, though it is starting, slowly and not yet by any means surely, but with ourselves. We began not to conceive of our existences as mistakes, our misfortunes as G-d’s will and our utility limited to being gracious for that which hath been given us. We got activated. We got interested. We got angry. We looked out on the world and found the blame for our misfortune lied not with G-d or with medical defects but with a society that was built up for centuries upon centuries without any thought to the prospect that people like us might live in it. In that moment – and we have each found it at different points in our lives – but in that moment, we saw power abused, we saw injustice – in short, we saw wrongs and so our rights were born. In that moment – that epiphany – the world changed for us, and disability rights were born.

In my own community – that of Autistic adults and youth, a group that has been targeted with an unprecedented wave of fear and pity-mongering as of late by entities that unjustly attempt to speak on our behalf – this paradigm shift is motivated by multiple sources. At one level, the socially constructed nature of at least some of our difficulties is a simple conclusion to reach, as many of our challenges are social in nature. At another level, our community’s outrage at lack of representation in the national conversation about us brought us to the disability rights outlook. This is represented for us in the neurodiversity movement, which seeks to recognize our neurology as legitimate and change the autism conversation from one of cures and eugenics to one of quality of life and equality of opportunity. Our movement for what we desire – independent, understanding, opportunity and respect – is a response to attempts to force on us what we oppose – dependency, isolation, pity and loss of control over our own lives.

The very foundation of our legal system comes from something remarkably similar. Why do we guarantee freedom of speech, freedom of petition, freedom of assembly, much less the right to a speedy and public trial or to not have troops quartered in ones home? It is a direct outgrowth of our experiences with the British crown and it was only once we had that experience with injustice that we could properly understand what justice looked like. A quick look across history will reveal much the same thing. Our national experience with slavery imprinted us with the right to freedom from forced servitude on the basis of race. The gains of the civil rights movement were not just the result of superior organization and a superb moral cause, they were our nation’s recognition – still partial – of the legacy of lynching, segregation and racism. Anti-Semitism was driven from the country club to the conspiracy theory fringe when the knowledge of the Holocaust came into our homes. Gay rights have advanced because of public awareness of brutal hate crimes such as the torture and murder of Matthew Shepard. To quote Harvard’s Alan Dershowitz, rights come from wrongs.

Let us be clear. This does not mean that we are purchasing social goods with our victimhood. There are those who would put it in those terms – the people who claim that we are owed something not because it is objectively just for us to receive it but because of our community having been deprived something else that should justly have been ours. Many aspects of the disability policy framework built in decades past are built on that idea, the retributive model of disability. This is the concept behind much of our Social Security Disability infrastructure. The result of it has, in fact, been a form of inaccessible infrastructure unto itself, with individuals forced to swear, even as many are only just starting their lives, that they are incapable of ever working in meaningful employment in order for them to gain the government support necessary to survive. This system was built on old assumptions of dependency – it was built for the conversation about need, not for the one about rights and about justice. It is one of many examples of the kind of infrastructure we must radically alter if we hope to bring the conversation about disability into the 21st century. Another example can be found in the judicial decisions that necessitated the recently signed into law ADA Amendments Act. For what reason did the disability community have to, eighteen years after the ADA first came into effect, work to pass it once again for a considerable portion of the disability population? It is because the judges that interpreted the narrow definition of disability that the legislation sought to fix saw the ADA as a law about charity – specifically, charity for the most severely impaired – not justice for all those who are being discriminated against.

What does the idea of rights coming from wrongs imply then, if not compensation for having been victimized? It should serve to show us what direction our advocacy should take and, much more importantly, it should show the public reason why the goals our advocacy aspires to realize are important. For too long, our civil rights movement has been one by stealth. Even as we built tremendous political power and created civil rights laws and social welfare programs, we often did it not by making a credible claim that this is the way the world should be, but by playing on the idea that society should show “compassion” and “pity” for the disabled. This was not entirely our fault. We’re dealing with a media and, as a result, a general public that has not even begun to understand the nature and implications of disability rights. But regardless of why we are here, we still have to deal with the results of having won our legal and political victories while bypassing the social ones that should have come first. The consequence is that our movement and all the progress it has brought is still seen, in most circles, as one of charity or worse still as a stopgap until – be it by eugenics, euthanasia or medical cures – disability is no longer a part of the human experience. This is what Dr. tenBroek was referring to when he wrote about our “right to live in the world” and the failure of the broader community to accept that right as of yet.

This knowledge places our struggle for recognition of even our victories on the civil rights front in context. Why, almost twenty years after the ADA, do we still see such extensive discrimination and lack of access in terms of employment and places of public accommodation? Why, ten years after Olmstead, do we still see institutions and nursing homes that are near impossible for our people to escape? Why, after Deaf President Now and many similar such actions are so many disability organizations groups that speak about us, without us? Why after the MDA Labor Day Telethon and Ransom Notes and countless other examples of unethical fundraising and advertising tactics do we still see media campaigns that devalue our very personhood and cast us as less than human?

The answer is because when we come to the public with our demands of rights and speak those rights unto the world with all the passion of that aforementioned epiphany, the world only sees part of the message. They see the demand for rights but not the wrongs from which the rights were born. They look at the individual who uses a wheelchair who cannot enter an inaccessible building or the Autistic student who, like I myself have been, is excluded from his home school and what they see is not an inaccessible infrastructure but needy, pitiful dependents. And they may meet our immediate demands for laws and public programs, as charity is still seen as necessary and good and proper by so many well-meaning souls. However, the enforcement of those laws and the implementation of those programs will never be as urgent or as meaningful a priority to them as it is for the “true” civil rights movements.

To them, this is still very much a conversation about need – not injustice. This is not a petty distinction. To have a conversation about justice is to call for a civil rights movement that all members of the human community should feel a moral obligation to join and support. To have a conversation about mere need is to call only for charity conducted mostly by those who usually do not feel that need themselves and have their own ideas about the manner in which it should be fulfilled.

I am reminded, by way of example, of an experience my group, the Autistic Self Advocacy Network, had when leading a protest against offensive advertisements depicting children with disabilities as kidnap victims posted across New York City. The campaign, called “Ransom Notes”, consisted of faux ransom notes from the disabilities that had taken the normal children that were supposedly once in the bodies of now disabled young people. We mobilized thousands of Autistic people and those with other disabilities, brought support from two dozen national and regional disability rights organizations and also garnered some support from sympathetic segments of the parent and professional community. Finally, after thousands of phone calls and e-mails, our story began to hit the media – with the UPI headline, “Ads anger parents of autistic children.”

Of course the story was accurately reported in other news sources and we did succeed in getting the ads withdrawn, but there is a certain sense of frustration over the lack of agency that is allowed our community. Even when every single one of the organizations doing press outreach and explaining our case to the public were consumer-controlled disability rights organizations, the only available paradigm that the media could place this in was one in which we were only passive onlookers as our parents fought on our behalf. Every disability group and most disability rights activists have similar stories.

And so even as we spend more money and more political will on disability issues than we ever have before, we are limited in what we can achieve because the conversation is not one about justice, it is not one about recognizing wrongs and rectifying the institutions that continue to commit them. It isn’t about putting power in the hands of the people who have been deprived it. It is about charity and dependency and all of those other things that infantilize and marginalize us, controlled by those who speak for us on our behalf and without our permission.

The average member of the public does not know about Buck v. Bell or the tens of thousands of Americans with disabilities or perceived to have disabilities who were involuntarily sterilized as a result of the eugenics movement. They do not know about Willowbrook or the countless Americans with disabilities who have had to live out their whole lives in institutions – much less the many Americans with disabilities who still must suffer this segregation. They don’t know about the Judge Rotenberg Center or school abuse through aversives, restraint and seclusion. The people in charge of our futures do not understand our history. They don’t see ADAPT calling out, “We Will Ride” or “Free Our People”. They don’t see Deaf President Now at Gallaudet. All they see is the Jerry Lewis MDA telethon or the Autism Speaks fear-mongering television advertisements or Jenny McCarthy and Jim Carrey promoting pseudo-scientific claims of pharmaceutical company-government conspiracies to poison their children into autism with vaccines. It isn’t just because the money and the media power is in the hands of those other groups. It’s because the public narrative about disability doesn’t know where to place groups like ASAN and the NFB and a movement like ours. The ideas about dependency run so deep, the charity and victim models are so ingrained, that the response of most reporters and members of the general public to our message is one of cognitive dissonance before pigeonholing our movement into whatever disability narrative is easiest for them to classify us into. Maybe this is why the disability movement has not yet had our Rodney King or Matthew Shepard moment – since the concept of disabled people as suffering is a natural, normal, expected thing in the eyes of the media and the public, suffering brought on from discrimination or abuse is simply placed into the same, “unfortunate but unavoidable” category as all disability-related misfortunes tend to be.

A perfect example of this can be found in the Supreme Court’s Alabama v. Garrett decision, where the court struck down Congress’s attempt to abrogate the sovereign immunity of the states from damages under ADA lawsuits on the grounds that there was insufficient evidence to “identify a pattern of irrational state discrimination in employment against the disabled." To a slim majority of the Justices of the Supreme Court, disability discrimination is not the result of having built infrastructures for only a portion of the population but a perfectly rational act that the equal protection clause cannot be expected to serve as a remedy for. To quote the Court, “the Fourteenth Amendment does not require States to make special accommodations for the disabled, so long as their actions toward such individuals are rational. They could quite hardheadedly–and perhaps hardheartedly–hold to job-qualification requirements which do not make allowance for the disabled. If special accommodations for the disabled are to be required, they have to come from positive law and not through the Equal Protection Clause.” Here, once again, disability rights are not matters of equal protection given to full citizens under the law, they are portrayed as matters of charity that good hearted people engage in.

The good news is that this does show us what our next steps should be. It explains the biggest obstacle for the disability rights movement’s ascension to the next level of rights discourse in America - placing us on par with other minority groups based on race, religion, sexual orientation and similar attributes. That obstacle is the failure to take our message to the public. I’m pleased by the progress that we’re seeing in that direction in respect to the growing Disability History movement, attempting to incorporate the history of people with disabilities and our civil rights struggle into the classroom just as the experiences of other American minority groups has been incorporated. In many ways, finding a way to cement our past into the American national narrative will be the best way to ensure we have a future. We must carry that message forward, but to succeed we need our President and Congressional representatives to join us in making that case to the American people. Furthermore, it is important for us to memorialize and to educate the public about the achievements of men such as Dr. Jacobus tenBroek as well as other disability leaders like Ed Roberts or Justin Dart not just to pay respect to those who have gone before but to show the world that we do have a history of taking control over our own lives and that there is a real and legitimate civil rights movement of, by and for people with disabilities. To quote Ed Roberts, “the greatest lesson of the civil rights movement is that the moment you let others speak for you, you lose.” Showing the world those parts of our past where we have confronted the wrongs that are being committed against us and restored agency to our community is one way for us to take back our voice.

Another thing that we must do is to begin to confront and to confront vigorously those organizations and groups that speak about us, without us. When Jerry Lewis or VOR or Autism Speaks go to the public and claim to represent the needs and perspectives of the disability community with their calls for more pity, more segregation, more eugenics and more distance from our dream of being recognized as equal citizens in this society, they perpetrate upon us an obscenity. This obscenity nevertheless has use in that teaches us about how important to the disability rights movement it is for us to take control of our own message and our own community. We must organize not just around laws but around the public conversation on disability, confronting those corporate donors and political infrastructures that give support to these repressive, fear-mongering groups that challenge our right to live in this world. To quote Dr. tenBroek himself, “there are…large and powerful agencies abroad in the land, considerable in number and vast in influence, which remain hostile to our movement in thought, in speech, and in action. Under the guise of professionalism, [they] would perpetuate colonialism. [Their] philosophy is a throwback to the age of the silent client, before the revolution in welfare and civil rights, which converted the client into an active and vocal partner in the programming and dispensing of services. In…[their]…lofty disregard of the organized blind as the voice of those to be served, [they] betray bureaucratic bias that is…[an]…image of the blind client not as a person to be served but as a defective mechanism to be serviced.” The same could be said about many similar groups that speak about us, without us in many disability communities.

Finally, in order to communicate our message to the public, we must also realize that the most effective social change comes not from activism but from individuals. For the public to understand that the disability message is a civil rights message, they must hear that message from their friends, their family members and their co-workers with disabilities. Beyond this, for us to accomplish that, we must succeed in broadening the base of the disability rights movement to encompass a broader scope of people with disabilities in general. There remain too many people with disabilities who do not yet have the chance to participate in our community. We must broaden our community and give every disabled person access to the disability culture and perspective.

I’d like to end by quoting American philosopher Henry David Thoreau, who said, “You have built castles in the clouds, now you must build the foundation underneath them.” As we talk about how to imprint the American public with the meaning and message of the disability rights movement, we talk about what must be done to build the foundations that will show that our vision is no dream. This is what we must do. This is what we can do. This is what we will do. Thank you for your time and I look forward to working with all of you to bring this hope into reality.

Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org/
732.763.5530

Not Children: Tony Attwood Still Doesn't Get It

Some people have the idea that adults with disabilities should be treated as if they were children. This demeaning attitude often manifests itself in claims that people with disabilities are unsuited for, or too immature for, marriage and relationships.

The Autistic Self Advocacy Network is seeking, by way of a petition to Dr. Tony Attwood, to bring attention to the harm done by prejudiced stereotypes that characterize people with disabilities in such terms. Dr. Attwood has a long history of associating with hate groups that spread such stereotypes. In May 2000, he made this statement:

"...if I'm talking to a mother who has say two children, one with Asperger's syndrome, and a husband who I suspect with Aspergers and she says I've got two children, I say well actually you've got three children in some areas..."

Well actually, no, Dr. Attwood, she doesn't; and such prejudices have no place in marital counseling for people on the spectrum, or for anyone else. When so-called support groups encourage people to treat their spouse or partner as childish and incapable because of a disability, and when psychologists suggest that the person with the disability is to blame for all of the problems in the relationship, this is wrong and it has to be stopped. Period.

In his response to ASAN's petition, which we received yesterday, Dr. Attwood continued to assert the baseless claim that "...stress within a relationship between an adult with Asperger’s syndrome and their partner can lead to the neurotypical partner having signs of a clinical depression."

No, Dr. Attwood, being married to an Autistic person does not make someone sick. And our community will not tolerate this libel any longer.