[Permission has been given to post this essay on autistics.org, under the condition that we preface it with a note that it is a follow-on to the author's 2003 Autreat essay (and workshop), an expanded version of which has been published as chapter 5 of Ask and Tell. Full bibliographic citations: "Building Alliances: Community Identity and the Role of Allies in Autistic Self-Advocacy", Chapter 5 in Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum, Shore, Stephen, ed. Shawnee Mission, KS: Autism Asperger Publishing Co., 2004.]

Identifying, Educating, and Empowering Allies

Phil Schwarz
Vice-President, Asperger's Association of New England
Autreat 2004
Philadelphia, Pennsylvania

Introduction: Historical Forces and the Case for Allies

In my previous Autreat presentation on allies ("Building Alliances", Autreat 2003), and in more depth in the chapter on the same topic that I contributed to the forthcoming book Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum (Shawnee Mission, KS: Autism Asperger Publishing Co., 2004), I described how the history of autism since the initial clinical definitions of Kanner and Asperger sixty years ago has been a story of two layers of misconception.

The first layer of misconception was the psychoanalytic theory of Bettelheim and others that blamed autism on cold and unloving parenting. In the 1960s and 1970s, parents of autistic children in the US, the UK and elsewhere organized and promoted research that overthrew those theories and established an organic, neurological basis for autism. But that revolution sowed the seeds of the second layer of misconception: that autism is a disease like any other organic disease, and that models for research, treatment, and equally importantly, fundraising and public awareness, that make sense for diseases like cystic fibrosis, muscular dystrophy, and even cancer, apply equally well to autism.

We who live the life know well that this is not true. Unlike these other diseases, autism is not fatal. Nor is it degenerative. Nor is it a disorder of a specific set of bodily functions, something essentially separable from the individual that the individual can be rid of with appropriate treatment and healing. It is a set of neurological differences in brain and central nervous system architecture that has pervasive effects upon cognition, sensory processing, experience and expression of emotion, communication, personality, and identity. These pervasive effects are not separable from the individual.

Nor are all of them intrinsically disordered. Although it is obvious to all observers that many of the effects of autism can produce significant distress and impairments intrinsic to the individual, there is a substantial set of effects of autism that produce handicaps not for any intrinsic reason, but rather due to lack of accommodations, flexibility, and tolerance on the part of the mainstream society.

However, the organic-disease-like-any-other model has been almost universally adopted by the major mainstream, parent-driven "establishment" autism organizations. Policymaking, fundraising and publicity are based on a characterization of autism as a monolithic "enemy", leaving no room for subtle distinctions between a "medical/pathological model" of impairment intrinsic to the individual, and a "social model" of handicap due to the inflexibility, intolerance, or lack of accommodations on the part of the surrounding society. The lion's share of attention and resources are focused on the former, at the expense of the latter. Autistic people are characterized as helpless victims at best, and frequently as burdens to their heroic parents, in an effort to leverage pity as a motivator for fundraising and legislative action. There is no room in that picture for autistic people to be self-advocates, much less for us to insist that any aspects of our way of being are valid and deserving of accommodation and acceptance by the mainstream society on diversity grounds — that a social model of disability is as necessary to understanding and responding effectively to autism as is a medical/pathological model of disability.

In this climate, our perspectives and agenda as autistic self-advocates are lost. The establishment organizations have all of the money, resources, and media attention. One might think, to paraphrase the meme that swept the Internet shortly after the 2000 elections, that All Our Base Are Belong To Them.

But there are too many open-minded individuals, scattered through the mainstream society, who by virtue of family relationship, professional contact, and just plain friendship and acquaintance, have come to know autistic people on an individual basis, well enough to see the misconceptions inherent in the establishment approach, and the truths inherent in the distinctions we make between impairment and handicap, between change that must be effected within the individual, and change that must be effected within the society.

If we can organize with those like-minded individuals, we have the potential to overcome the second layer of misconception, just as the parents overthrew the first layer in the 1960s and 1970s, through one-to-one winning of hearts and minds. But there are far fewer of us, with far fewer resources, in comparison to the "autism establishment", than there were for the parents of the 1960s and 1970s in comparison to the professional and clinical establishment of that time. We cannot succeed without leveraging numbers of people and resources far greater than our own.

How do we accomplish this?

Models for Organizing Allies and for Articulating Our Message

The gay community has faced the same sort of situation in its history, and responded by identifying, educating, and empowering allies in the straight population, in numbers far greater than their own. Theirs is a model for building and leveraging a network of allies that is particularly relevant for us. Regardless of one's feelings toward the gay-rights movement, it is instructive to examine the issues that the gay community identified as needing action, and how it leveraged the role of ally and developed networks of allies to address those issues.

Likewise, the Deaf community has developed a clear characterization of the distinction between impairment intrinsic to the individual, and handicap due to the inflexibility, intolerance, or lack of accommodations by the surrounding society, as that distinction applies to deafness, and a clear vision of life lived well as maximally enabled Deaf people rather than as people handicapped by a lack of hearing in a hearing world. It has done so with significant success in the face of prevailing "conventional wisdom" in the mainstream society that deafness was entirely an impairment intrinsic to the individual, reinforced by an establishment of organizations such as the Alexander Graham Bell Association driven by hearing people rather than by Deaf people. The Deaf community experience can serve as a model for us to articulate the social model of disability as it pertains to autism.

We need both kinds of model: one for how to organize and mobilize allies in numbers far greater than our own, and the other for how to articulate the message that we want those allies to help us carry and spread.

Roles for Allies to Autism Self-Advocacy

The gay community's model points the way here: the number of parallels between the roles that have evolved for straight allies to gay people, and roles that make sense for non-autistic allies to autistic people, is striking and significant.

These roles, as they pertain to autism, include:

Countering mainstream stereotypes, misconceptions, and "conventional wisdom" about the nature of autism

And about how well autistic people perceive, think, feel, and comprehend
On a person-to-person, grass-roots level

Countering intolerance of non-harmful atypical autistic behavior

And denial of the validity and meaningfulness of our sensory and socializing preferences, aesthetic sensibilities, cognitive style, & emotional processing
On a person-to-person, grass-roots level
And as a diversity issue in schools and in the workplace

Challenging, witnessing, and intervening to prevent harassment, bullying, and other forms of overt hostility.
Working to counter discrimination in housing, employment, and membership or participation in public organizations and activities.

Within corporate management & HR
Within governmental and nonprofit organizations

Providing solidarity in numbers

And ally-to-ally outreach, sometimes better than self-advocates can

Being a "safe person" for people in the process of disclosure

The parallels between coming out for gay people and disclosure for autistic people are particularly extensive and striking.

Raising one's autistic kids to be effective self-advocates
Raising one's non-autistic kids to be effective allies

This list was adapted from ally program websites at Eastern Michigan University, the University of Central Florida, Texas A&M University, Western Washington University, and the Human Rights Campaign.

Characteristics of Good Allies

Again, the gay community's model points the way here: the number of parallels between characteristics of good straight allies to gay people, and characteristics of good non-autistic allies to autistic people, is striking and significant.

But the gay community is not the only one with relevant models and experience here. In fact the following list was adapted from a women's rights organization's manual for male allies. (NY State Office for the Prevention of Domestic Violence Bulletin, What Makes a Good Male Ally?):

They are able to take direction and leadership in work as an ally from autistic people.

They understand that autistic people's empowerment is not a threat, but rather an additional strength.

They listen to autistic people and have a willingness to "call out" other non-autistic people on autistic people's issues.

They do not try to define the problems that autistic people share with them.

They are willing to take a stand on issues of discrimination and exclusion by being vocal about them.

They advance their perception of autism and autistic people by listening and talking to us and by challenging "conventional wisdom" & stereotypes about us

They model behavior for their friends and other non-autistic people by letting others see their example.

They work to help unburden other non-autistic people of the misconception that autistic self-advocacy is about "attacking parents"

They are willing to hear autistic people's reality "full out", with the realization that there are aspects of this reality that will be foreign to them.

They are not struggling with their own identity and self-esteem, and do not need to prove that they are "normal"

They are nonjudgmental — which implies equality and respect.

They understand that autistic people know that all non-autistic people are not "the enemy".

They are working to change the culture of mainstream autism organizations so that other non-autistic people can publicly voice their support for autistic self-advocacy.

They don't assume that high-profile people in the "autism establishment" are automatically allied with us because of their credentials or positions of organizational leadership.

They have done their personal work to become aware of their own issues relating to the issues autistic people face.

They listen, but don't try to "fix" the problem by themselves.

Pseudo-Allies

Sometimes, those who claim to be allies to us are in fact not acting in our best interests. Aprille Annette of the Professional Enrichment Program, a San Francisco Bay Area organization supporting people with disabilities engaging in professional theatre work, wrote an excellent essay about pseudo-allies, from which the following material is adapted.

There are at least three varieties of pseudo-ally and pseudo-ally behavior:

The Missionary — gets points for helping us, but the problem is that they are often helping us their way. They get points; we get used.
The Vulture — exploits us, often making money off our needs, our work, or our lack of power. When a Vulture makes money off our work, it is often more money than we make off of it. The Vulture started multiplying at an incredibly fast rate after the passage of the Americans with Disabilities Act.
The Do-gooder — motivated by a conscious desire to help the less fortunate and a subconscious desire that is patronizing and condescending.

How does one tell a true ally from a pseudo-ally? Sometimes the language they use is a dead giveaway:

"Courage", "inspirational", effusive, excessive, unrealistic praise
"These people,"; "us" and "them" rather than "we"

Some true allies started out as pseudo-allies — but listened and learned and grew and re-examined their own motives and assumptions.

True allies understand the distinction, and the problem. Allies who seriously ask the question of themselves, whether they are functioning as true allies, probably are.

A key determinant is the power dynamics of the situation. Here are some points to consider and some questions to ask:

Someone who appreciates your work and leaves you feeling powerful is probably an ally (or a potential ally!)
Conversely, people who leave you feeling grateful to them may be a pseudo-ally
In an organization: is the power all in the hands of non-autistic people? Are there autistic people in non-token governance roles?
Who makes the decisions in the relationship or organization?
Do they understand the problem of pseudo-allies and can they recognize the categories, behaviors, and vocabulary of pseudo-allies?

Identifying Potential Allies

The Human Rights Campaign website describes several categories of potential ally:

Fair-Minded Allies

People who have no personal connection but are motivated by the inequity and misunderstanding and lack of a voice in decisions about us that we face.

Youth/Student Allies

Similar to fair-minded allies, but connected as classmates or schoolmates

Parents as Allies

Perhaps the people with the strongest motivation: the well being and future of their own children

Other Family Members as Allies

Grandparents
Aunts/uncles
Sibs, cousins

Allies from other disability and civil-rights groups

To which we can add:

Professional/caregiver/clinical/educator allies

Open-minded people who work with us in a professional capacity.

Workplace allies

Coworkers/managers invested in our success, for business reasons if no other.

The best sources of allies are those with the strongest motivations to become allies.

As with the gay community, family members can be strongly motivated.

But many are not, because they have bought the "cure" model. Parents of young autistic children and those of newly diagnosed children often get only that model from the "autism establishment".

The presence of parent allies in such situations — who can speak and relate to these parents on a parent-to-parent basis — could really counteract that one-sidedness and open their minds to other possibilities, in ways that even the best communication from autistic self-advocates who are not themselves parents (such as Jim Sinclair's classic essay "Don't Mourn For Us") cannot, at least until they are ready to hear it.

Many parents/family members of young autistic children, and of profoundly disabled older autistic people, see only the profoundly disabling factors, and those factors flood everything else out.

An analogy:

When we say "autism isn't all bad, isn't just disability", these parents say: "You're telling me the sky isn't blue?! Autism is as surely a 100% bad thing, as surely as the sky is blue!"

The truth is — the sky is really black and starry. It only looks blue during the day, because the sun floods everything else out. But when the sun is gone from the sky, the stars become visible, and a whole 'nother universe opens up before us...

As outcomes improve and profoundly disabling factors are mitigated, the differences that aren't intrinsically disabling begin to be noticed.

Parental motivations change as personal goals move up the Maslovian pyramid: now it becomes a matter of rights and access.

It is easier to find allies among parents of kids whose issues now revolve around access to education, employment that truly leverages their abilities, stable and safe living situations, and so on. They have begun to understand the battles we are fighting; they have begun to fight the same battles themselves.

Where parents of kids whose issues are at a more basic developmental level are not receptive to our message, they may be more receptive to the voices of other parents — particularly as they look towards the future and seek out other parents who have "been there" before them and worked through the challenges they have as parents. This is another situation where parent allies may be more effective than even we can be, at getting our message heard and spread.

In a similar vein, those professionals, clinicians, and others working with autistic people whose agenda involves maximizing their presence and effectiveness in dealing with the mainstream society are likely to be the most motivated to become allies.

This raises a concern however: Where does this leave autistic people for whom such an agenda is not realistic (at least at present)? The key here is educating the allies we get from the "more able" sector, that what applies to the "more able", in terms of rights, equity, and respect, applies to all of us.

The more of us who can articulate the sensory, cognitive, communicative experience of being autistic can be heard, the more the mainstream "conventional wisdom" about autism will become based in the realities we experience and less in the prevailing alienizing myths (created almost exclusively by non-autistic people).

And that will ultimately force change in how even non-allies deal with us.

Allies — even those from the "more able" sector — can help by helping us be heard and by validating what we say. Sometimes this is the best counter-measure against those who seek to invalidate what we say and who we are.

Dena Gassner, an Aspie woman from the Cincinnati area who gives presentations to parent groups, has a picture in the section of her presentation material on how parents and family of autistic people can get involved, of a lunch counter sit-in from the era of the struggle for civil rights for African-Americans in the US South in the 1960s. She asks the audience if they can tell why she included that picture at that point in the presentation. The answer is that there are white kids — volunteer civil-rights activists — sitting with the black folks at the whites-only lunch counter. And it is when the white kids got involved with the demonstrations that the news media came in with their cameras rolling.

Sometimes it is the presence of allies who on the face of it don't need to be there, who are not themselves marginalized in the way we are, that attracts the attention of the mainstream — and gets our message conveyed.

Education of Allies: Talking Points

Even highly motivated allies who are truly on-point with our perspectives and agenda face an uphill battle. At present, the "conventional wisdom" about autism is still overwhelmingly steeped in the medical/pathological model of disability.

Our allies need support and preparation, to anticipate and deal with the opposition they are likely to encounter.

They will encounter opposition from those who benefit (or who think they benefit) from the status quo. Those people are invested in maintaining that status quo. They include many professionals, clinicians, educators, administrators, employers, and parents — though the parents are often in the category of those who think they benefit from the status quo more than they truly do. There is a great deal of zero-sum thinking on their part, a conviction based on years of fighting for resources that they need to do whatever is necessary to maintain their share of a finite pie.

Our allies need to understand the motivations and rationalizations of those who oppose our message. They need talking points with which to counter the usual attempts to discredit our message and us.

The following is a list of some of the tactics used by those invested in excluding us from power, and ways that allies can respond.

It is adapted from an article written by Frank Klein on his Autistic Advocacy website (ABA Proponents Attack Autistics) in defense of Canadian autistic activist Michelle Dawson, who came under attack for her essay "The Misbehaviour of Behaviourists" challenging the premises under which Applied Behavior Analysis (ABA) is sold to parents and school administrators by some of its proponents as "medically necessary intervention" for young children diagnosed with autism.

Discrediting the messenger:

"[Self-advocates] are not really autistic."
Allies saying "Oh yes they are" may be taken more seriously than we are.

"[They] are nothing like my child, so [they] can't speak for him."
Allies pointing out the fallacies may be taken more seriously than we are:

Applies-and-oranges: you can't compare a child to an adult.
Defining autism to exclude all those who can advocate is a pernicious catch-22 that creates a permanently disenfranchised underclass.

Strawmen and false dichotomies:

"If you don't support cure, you are therefore advocating neglect."
"Why [do you] want to deprive my kids of a chance of having a life?
Parent allies may best be able to silence such false claims, by counterexample.

Exaggeration and all-or-nothing thinking:

"Autistics are trying to tell us that helping our kids is a form of child abuse!"
Parent allies may best be able to expose the faulty logic here and separate approaches used appropriately to help their kids mitigate specific problems, from interventions intended to make a kid "look more normal".

Investment in a cure model:

Belief that there is a "normal" kid inside.
Best counter-measure may be strength in numbers, to dispel current mainstream "conventional wisdom" at a grass-roots level, one-to-one.
Much like dispelling the notion that homosexuality is just a choice, and not a pervasive, identity-determining organic characteristic.

Pessimism about the potential for effecting societal change.

Ally voices are particularly important here: the white kids at the lunch counter is what brought the media with their cameras rolling.

Investment in their own "normalcy"

Our analogue to the gay-community archetype of the virulent homophobe who is so homophobic because deep down inside he's afraid he's a bit gay himself.
NT allies can lead here by example, by being publicly and visibly unafraid of diversity.
Cousin allies perhaps even more so, by standing up and being counted, and challenging and throwing off the implicit stigma of being different.

Where Do We Go From Here?

The ally-development process is an ongoing, evolving one. My Autreat presentation last year represented just the very beginning of a definition of the role of non-autistic allies within the autism self-advocacy movement.

In the year since, in the course of contributing to Ask and Tell, and in the course of further presentations and discussions, I compiled or adapted the various lists and materials presented in this article. Together they could form the beginnings of a more formal training manual for allies. Contacting and working with one or more organizations from the gay community or elsewhere that train allies would be helpful too, in developing such training materials.

My original Autreat presentation from last year has grown to become a more comprehensive introductory presentation to parents and other populations of potential allies, about the role and function of non-autistic allies within the autism self-advocacy movement. The chapter on allies in Ask and Tell serves the same function in book format.

What is needed now, is to take these materials, and others like them, on the road, in outreach to parent groups and other groups of potential allies.

Here is what I envision as an action plan from this point forward:

Continue the process of defining ally roles.

Something we can do as a community, through ANI-L and ANI-ACT.

Develop means of outreach to broader potential ally populations.

Identify opportunities to present to potentially receptive populations.

Develop ally-to-potential-ally outreach.

Work with the parents out there who already "get it".

Develop training materials for potential allies.

This essay touches on the points to begin with.

Start leading replicable training sessions within local autism organizations and communities sympathetic to our approach.

...A concrete role for a re-activated, re-energized ANI speakers' bureau! Only for this particularly effort, speakers who are not formally diagnosed autistic, but are themselves allies, have validity and legitimate standing.

Continue publicizing the concepts through speaking engagements and online outreach.
Respond to and work with motivated self-starters within the potential ally population.

They're the real gems.

Develop training materials and replicable training sessions for parent allies to teach their AC kids how to become effective self-advocates.

Begin with the work of Valerie Paradiž and Kassiane Sibley — Valerie is developing self-esteem and self-advocacy curriculum for the ASPIE school she directs in Woodstock, New York, and Kassi wrote another of the chapters in Ask and Tell, specifically on how to teach self-advocacy skills at all points along the developmental lifespan.

I think it's time to start moving ahead on these items.