2023 Update

This is a personal blog started in 2011. It is no longer active, updated, or maintained. Unfortunately, it appears that I've also irreparably broken some of the links by accident.

21 March 2012

Who gets to be an ally?

Like most words that see common use in the autism or Autistic communities, "ally" has its own share of baggage. People who call themselves "allies" have bullied, belittled, or derailed Autistic people, while other people who call themselves "allies" are guilty of overt ableism, marginalizing Autistic people, or taking over conversations where Autistic voices should be at the center.

So who gets to be an ally?

You are not an ally if you dismiss an Autistic person's experiences because of your perceptions of that person's abilities and challenges.

You are not an ally if you insist that your voice and your experiences are more important, accurate, or necessary than those of an Autistic.

You are not an ally if you refuse to acknowledge the validity of an Autistic person's opinions or ideas.

You are not an ally if you routinely attack or dismiss an Autistic person's opinions or ideas.

You are not an ally if you use repeatedly use language that an Autistic person has told you is offensive or triggering, or if you insist on using that language anyway.

You are not an ally if you patronize or talk down to an Autistic person.

You are not an ally if you insist that we or your kids are broken, diseased, or defective.

You are not an ally if you insist that an Autistic adult is "not like your child" and therefore can't speak to any of your child's experiences or perceptions.

You are not an ally if you insist that an Autistic is simply too angry or too emotional or unable to empathize.

You are not an ally if you routinely take the self-expressions of Autistic people as personal attacks on you, and make yourself the victim of hurt feelings in any conversation.

You are not an ally if you turn the focus of the conversation back to you and your feelings, especially if that was never the purpose of the conversation.

You don't get to be an ally by calling yourself one.

And you don't get to be an ally because you think you're one.

We and we alone get to determine who our allies are.

Many of our allies were anything but when they entered the world of autism. Others intuitively understood the way it is, and knew what it meant for our community to be marginalized. Some of them are parents and others are friends. Some are professionals, and some had no direct connection with autism until they met one of us -- online or in person.

Most of our true allies aren't there looking for recognition or fame for themselves. That's another marker of a good ally. We give it to them anyway in blog posts and on social media and in private discussions about who are allies are, because it's so very rare to find good allies. (In fact, in November 2011, the Autistic Self Advocacy Network awarded its first Outstanding Ally Award to Nancy Thaler, Executive Director of the National Association of State Directors of Developmental Disability Services.)

Most of our allies don't go around insisting that they are allies and shoving that word down everyone's throats. They know that they're our allies, and we know that they're our allies, and there's no need to wear a neon flashing sign that says "HELLO! I'M AN ALLY AND MY NAME IS ___." People who feel the need to advertise their self-proclaimed "ally" status probably aren't our allies. (They might be in the future, but if you feel the need to reassure yourself like that on a constant basis, you probably aren't.)

And our allies are there for us not only in the pleasant, seemingly calm times, but also when we are being attacked, de-legitimized, and silenced. Allies assert our right to be part of and leading in a conversation about us. Allies speak loudly against de-legitimization and derailing, and stand with us when the media, the public, or just about anyone else insists on devaluing our lives and experiences.

We can see who are true allies are in bad situations. The true allies stay with us. The superficial ones seize the opportunity to show their true colors.

An ally is a person who understands that the leading voices in the conversation about autism must be Autistics, who accepts that the best authorities on the Autistic experience are Autistic people, who recognizes that the balance of power has historically marginalized and excluded Autistic people, who listens before speaking, and who supports the empowerment of Autistic people in words and actions, but mostly in actions.

And an ally is a person who will be neither intimidated nor swayed by the plethora of misinformation, misconceptions, de-legitimizations, and derailing levied constantly against us.

An ally is a person outside the Autistic community -- the community of Autistic people -- who is welcomed to join with the Autistic community in celebrating our identity and working toward the creation of a world where Autistic people are accepted and respected and included in all spheres of public and private life, across the lifespan, and regardless of severity of disability or presence of co-occurring conditions.

Anyone who isn't Autistic can be an ally.

You don't have to have an Autistic family member or significant other. (But you will have Autistic friends eventually if you don't yet.)

Some of the best allies can be people with other disabilities or from other historically marginalized groups. (They can sometimes also be the worst "allies.")

Bottom line, no one gets to call themselves an ally.

The Autistic community gets to decide who are our allies, because that's what an ally is -- someone who aligns with someone else, not someone who is in control of the conversation or relationship from the start.


  1. Omg, my daughter went to a school that did so much self promotion but when push came to shove it was all talk nothing real to back it up. Being an ally can be tough work, but that is where you get to prove that you really are an ally.

    This is so true,
    Rosie c.

  2. And I still have not figured out what the autistic community actually *is*, outside of my own family who seem to all be on the spectrum. I certainly find few allies of my own, and fewer still who understand what it is to be both autistic and a parent of autistic kids.

  3. Totally and utterly behind this statement. I have "family" whom I would perpetrate violence against if they called themselves an ally in front of me. So far as I am concerned, a person attempting to speak for me who is not autistic is not my ally precisely because I am perfectly capable of speaking for myself.

    One of your statements, [...]"and there's no need to wear a neon flashing sign that says"[...], hits the nail right on the head. I was reading an article on another site that says at one point that people who really are Irish do not need to advertise the fact. I have had a long run of experiences with people who claimed to be on my side, and acted in a fashion that is anything but. And the people who did turn out to do the most for my own cause felt no need to say anything to that effect. They let me tell others that they were on my side. And that is what a true ally does by instinct.

  4. I met some folks recently who introduced themselves as , " I'm trying to learn how to be an ally." I liked that.

    1. Totally agree with this, too. Acknowledging that you need to learn something is, as the Buddhists would say, the first step on the path to enlightenment. Who are these folks you speak of, katie?

    2. I definitely appreciate folks who realize that they need to learn, and are committed to the learning process. :)

    3. A couple people said something like that to me at the Allies in Self Advocacy conference I was at recently. Or maybe it was just one person. I was so overstimulated, I don't really know.

  5. This troubles me. Allies do in fact do all of these things. Because allies are people, and people are imperfect. Even someone like your friend Kim, who has done many, many of the things on your list, is an ally-- just not a very good one.

    I would argue that good allies do not attack ASAN for objecting strongly to something like the CDC Wandering Code. They do not insist that autistic people cannot use the phrase "autistic communication" without clarifying that we are not talking about smearing excrement on the wall. They aren't okay with Autism Speaks hosting Wakefield while simultaneously attacking ASAN for working with FC people. If they do mess up and do things like that, they don't deny that they did anything wrong and demonize the autistic people who objected.

    It's fine for you to look past all that and declare Kim a good ally, as you have. It's not really fine for you to be okay with all of that from her, or other people who are your personal friends, and declare ANYONE else with good intentions "not an ally" because you happen not to know them or like them well enough to give them the benefit of the doubt.

    Purity tests KILL civil rights movements. I caution you against them.

    1. Landon,

      I don't cast judgment on people based on whether they are "personal friends" of mine or not. I am not "personal friends," in fact, with the vast majority of the people with whom I maintain correspondence or connect on social media websites. The circle of people whom I can honestly describe as "personal friends" is very small compared to the circle of people with whom I interact on a regular basis, especially online. Many people who are acquaintances OR personal friends of mine, OR relatives of mine, display very ableist attitudes, or otherwise act in ways that make it clear that they are not my allies as an Autistic person. That doesn't mean I can't choose to associate with those people (or in the cases of relatives, I have no choice but to be associated with them.)

      And my association or correspondence with a person should not be conflated with support for or agreement with everything that that person says, thinks, or does. After all, I cannot also be expected to be aware of everything that an acquaintance or a friend says, thinks, or does anyway. Some of my friends (personal friends, that is) may not know of the depth of my involvement in Autistic advocacy. I don't always know what my friends, and especially my acquaintances, are doing or thinking or saying. I think it's very unfair of you to take such a holier-than-thou attitude toward me on the basis that I associate with someone who has apparently done and said things with which I disagree or that I dislike. (I wasn't even aware of most of Kim's recent activities until maybe about yesterday.)

      There are people who are undoubtedly very good allies whom I dislike. (I'm not naming names.) And there are people whom I like very much who are awful allies, or who can't even pretend to be called allies. My consideration of a person an ally or not has absolutely nothing to do with my relationship with that person (if any) or whether I like them. It's very unfair and grossly judgmental for you to assume otherwise.

      Good intentions are nice. In many people, good intentions can be the first step toward learning how to be an ally. In other people, good intentions can be very dangerous -- such as people from the anti-vaccine movement or the "recovery" movement. I would argue to the death at the vast majority of those people are very well-intentioned, but their ideas are very dangerous and harmful.

      This post is not meant as a "purity test" of any kind. It's an expression of my response to people who have claimed to be allies while acting against the interests and desires of the Autistic community, and read in that context, I think you'll find the attitude a lot less "high-minded" than you seem to have read.

  6. Lydia, this is an awesome piece, and I find myself saying, "You go, testify!" Your list is excellent for this situation, but it's also excellent for teaching outsiders on the borders of any marginalized community some sensitivity and manners.

    In your description of what an ally is and isn't, I'm reminded of the Deaf culture, where I was once an outsider struggling to learn sign language and how to function within a closed culture. There is a fascinating tradition there, which is that you cannot create a name sign yourself; a Deaf person is the only person who can give you your name sign. I find this beautiful and also a little daunting. There are thresholds to the culture, not just linguistically, but also socially. You cannot be recognized until you are recognized.

    I am on the outside of this autism community, and trying to find a way to support and engage with individuals as I spend time studying the many issues, the many sub-communities, and the many standpoints within each community. It's deep and sensitive set of issues, and I'm treading as lightly as I can.

    I am on the outside of this community as an empath; as the proto-empath, actually, and I'm working to challenge the slander that Autistic people are not empathic. I do not call myself an Autism ally, because no one has given me my name yet. And that's okay; I haven't earned it.

    However, I respect Landon's point about purity tests, because becoming an ally seems to be very conditional and doesn't seem to be the same as receiving a name sign. You only need to receive your name sign once, from one Deaf person, and there is no mechanism for taking it back. In Deaf culture, I will always have my name. If I behave like a fool in a Deaf setting; if I break rules; if I use the wrong sign and offend someone, I still have a name; I still exist.

    And though I respect your writing, your intent, your intensity, your advocacy, and your humanity, I do wonder (and this is a real question): If I receive my name as an ally in this community and then blunder into a really stupid behavior, or back the wrong person in a conflict, or say something idiotic because I don't have all the background information, will I lose my name?

    I'm wondering if it even matters, what happens to me, in the larger scheme of the everyday dehumanization Autistic people face?

    1. Being an ally is not the same as having a name, and it's not the same kind of an identity as being autistic or Deaf. In fact, making being an ally your identity gets very dangerous very fast, because then when you do screw up--and you will, it's inevitable, you're a human, right?--attempts to point this out will be felt as personal attacks, and you will lash out and wind up hurting the community you were originally trying to support.

      So, yes, your last paragraph is more or less on the right track. Being an ally means that *you* personally don't matter to the conversation. It's not about you at all. It's about the people you are supporting.

      I think that's what makes being an ally so hard. People from x privileged group are used to taking up space. Being an ally means, sometimes, taking up less. Kicking yourself out of the center of things.

      That's what Lydia's post is about. I'm going to quote from it, because the words really do speak for themselves.

      "You are not an ally if you turn the focus of the conversation back to you and your feelings, especially if that was never the purpose of the conversation."

      "People who feel the need to advertise their self-proclaimed "ally" status probably aren't our allies. (They might be in the future, but if you feel the need to reassure yourself like that on a constant basis, you probably aren't.)"

      "The Autistic community gets to decide who are our allies, because that's what an ally is -- someone who aligns with someone else, not someone who is in control of the conversation or relationship from the start."

    2. Thanks Julia, yeah, I'm definitely looking at the absolute certainty of the screwup potential. And it does remind me of my time in the Deaf culture, where, even though I had a name sign, I would always be a "hepe," or a hearing person (with no Deaf relatives), and therefore never a member of the community. I was a teen and desperate to belong (wherever, anywhere), but I could also read the obvious body language and ASL directed at me. So I was very hesitant, yet my ASL teacher made community membership a part of my grade; yow. If there had been a grade for the extent of cultural screwups, I would have been valedictorian. Of despair.

  7. "You are not an ally if you refuse to acknowledge the validity of an Autistic person's opinions or ideas.

    "You are not an ally if you routinely attack or dismiss an Autistic person's opinions or ideas."

    I hope this means "...on the basis of that person being Autistic, rather than on the merit of the ideas themselves."

    Because being Autistic (or not) doesn't confer immunity against having bad ideas. Autistic people are fully capable of having bad ideas, even when it comes to autism; I'd cite aspie-elitism/aspie-supremacism as an example. Attack mode is something I try to stay far away from, but there are ideas that need challenging, whether they come from Autistic people, allies, both or neither.


  8. You can live your whole life, and never be regarded as an ally of any group. All that matters is how you live your life, and how you treat others, especially the ones you love. The rest is political, I think.

    I adore my son. I'll do what I think is right for him, because, in his behavior towards me or I towards him, we will communicate that to each other. Life is so much simpler than we try to make it.

  9. Love this ... "You are not an ally if you insist that we or your kids are broken, diseased, or defective."

    My number one "fight" against others while protecting my son (Autism spectrum - NLD) is trying to explain that he isn't broken or defective. He is a unique individual that sees the world so much different than we do, and has SO MUCH value to add to everyone he meets. IF ONLY they would see him for who he is, instead of a lesser person. I've had other mothers tell me "oh how hard for you". No. My son is not "difficult". He is DIFFERENT. And honestly, he is MUCH MORE well behaved than a "normal" kid or even his "normal" sister. I have no interest in looking for a "cure", but rather embracing who he is and what he can do that.

  10. Hi, short bio here: School bus assistant for special needs students for 16 years and I have seen the gamut of so called allies. When I discovered my own autism after reading Rudy Simone's book "Aspergirls", I quit my job because, well, my worlds began to collide in interesting and life changing ways. Suffice to say: my anger at children being dosed with "meds" at increasingly younger ages (and I know what they did to me in my 30's when they tried to FIX me!!!) Drugs to keep them "compliant". Cocktails of drugs. And so few teachers who really really GOT what it means to be different and don't get me started on those who even had autistics in their own families and still did NOT get it. I am still outraged. But since my own self diagnosis it all began to make "sense" to me. And it's been hard. A lot to unpack. Thank you for listening.


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