How Autism Parents Can Listen to Self-Advocates

Shannon Des Roches Rosa

Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen.

Winston Churchill

You’d think we parents of kids with special needs — righteous avengers that we so often are — would be extra-invested in listening to the self-advocates who share our children’s experiences, who in many cases used to be our children. You’d think someone like me, who truly believes behavior is communication, would take more time to understand why a self-advocate would criticize something I’d written, would ask for more information before reacting, would understand that a self-advocate can both be articulate and need communication accommodation. You’d think that, knowing how many times even well-meaning people have dismissed my son’s needs or spoken to him as though he was an obedient puppy, I’d understand how self-advocates might have very little patience for parents who patronize or disregard them.

But, I often don’t get it, as I am a neurotypical parent, not a self-advocate. And when I advocate for my eleven-year-old son, I sometimes overstep advocacy boundaries, or am blithely non-inclusive — talking about “children with autism,” for instance, when I really mean “people with autism.”

If self-advocates let me know that my efforts are misguided, that is when I have a choice. I can react instantly and defend my intentions — or I
can take a step back, and try to understand why a self-advocate would
take offense at something that I worked so hard on, and meant so well
by. I can listen to what they are saying, rather than how they are saying it
(not always easy). I can try to determine exactly what I have done that
is hurtful, and ask how I can avoid doing it again. And I can remind
myself that this process, this learning does not equal total and
complete agreement (nor should it; if we are truly talking about a
meeting of minds).

It’s not easy. I am a defensive
person, I have a hard time taking criticism. I also loathe conflict and
want everyone to get along. Plus, I live on the Internet where instant
reactions are not just possible but expected. So, instead of listening
and acknowledging, instead of giving myself processing time, instead of asking questions — I too often react on my terms. According to my expectations of civil disagreement, and my expectations of trying to understand each other’s contexts.

is ironic, really, when you consider that I am most often engaging with
Autistic self-advocates. Even those not terribly familiar with autism
usually know the stereotypes of frankness, and of challenges with
understanding perspectives not personally experienced. I should know
that demanding diplomacy, and asking to understand each others’ contexts
is not exactly fair in a neurodiverse environment. As Nomatissima wrote in I’ve Earned My Anger: Policing and Dismissing Autistic Emotions:

fact that my emotions are deemed “not appropriate” for the situation
makes it all the more infuriating. It may not seem like a legitimate
response to a neurotypical, but an autistic perspective is going to take
certain things a lot more seriously, and will more rapidly notice when
something isn’t right in a situation related to disablism. It’s not
always going to be pretty, and we’re not always going to be able to sum
it up in tidy little speeches. That’s okay. It should just show how
committed we are to this, and what it means for us, how profoundly we
care about this topic. It’s not a matter of weakness, lack of manners,
or being “emotionally incontinent” (Nice imagery there, eh?)

autism stereotypes I cited above are not universal among the diverse
community of Autistic self-advocates, of course. Some folks with autism
are fully committed to civil disagreement. Others have clarified that it
is unfair for we who rely on the (problematic)
concept of theory of mind — on being able to anticipate how others
might feel and how our actions would affect them — to expect
accommodation from Autistics. As spunkykitty wrote on Rachel Cohen-Rottenberg’s Autism and Empathy project:

is this Theory of Mind really so great to have? For what good purpose,
if only to negotiate and manipulate? Frankly, I am tired of always
trying to read other people’s minds and always bending over backwards
and in every compromising position to try to be sensitive to other
people’s feelings.

I am the opposite of
not considerate and not empathic. I am self-destructively considerate
and empathic — but where has that landed me? I spend 80% of my
emotional thought-life trying to figure out other people’s intentions
and hidden meanings, and trying to be caring, loving, gentle,
considerate. But I do not even command half as much space in their minds
or hearts. Not even with their supposed adeptness at Theory of Mind
would they bother to try to understand my feelings, my thoughts, and my
desires. That is the truth. Painful? Yes, but truth is truth.

we parents say that we want to have conversations with self-advocates,
then we need to do the human thing, and truly listen, try to come into
self-advocates’ spaces, rather than always expecting them to come into
ours. And then try to ask the right questions! As Lynne Soraya wrote about her fourth grade teacher,
whose overzealous attempts at forced social inclusion made Lynne
miserable, and who wished her teacher would have just asked her why she was rejecting her social overtures, or tried to understand why she was behaving the way she did:

My best teachers did ask
why. Better yet, they often read between the lines and came up with the
answers themselves. It’s sad for me to see that despite all the education
and awareness, so many have not learned to do the same. The unfortunate
truth is that sometimes, what masquerades as compassion and empathy is
really just judgment, in disguise.

It’s hard for me
not to get defensive when self-advocates are critical. Because I mean
well! But why should self-advocates think I’m any different, if their
experience has largely been that people in my position discount their experience, and if I’m still talking, not listening?

Some of the most difficult exchanges happen when self-advocates criticize parents, and parents respond that self-advocates are not like their kids
and cannot speak for them. This make my conflict-averse head spin.
Because here’s the thing: on the small scale, the personal experiences
within the disability community may differ, but on the larger scale, and
in terms of advocacy needs, our kids and self-advocates have more in
common than not. Making comparisons isn’t helpful, not when both
experiences are legitimate — and especially when those comparisons are
tangents, irrelevant to the argument that triggered them in the first

We parents like to think of ourselves as
good people, and hopefully, mostly, we are. But do our actions back up
those good intentions? We get filled with righteous indignation while
watching movies about objectification by the dominant culture, films
like Temple Grandin, Boys Don’t Cry, or My Fair Lady. We are outraged by
stories of middle school Aspergian torture.
We believe, in our souls, that we would never behave so badly toward
another human being. We believe that, were we ever in those situations,
we would act differently. Right? Let’s try to prove it.

try to demonstrate that we are aware of our privilege as neurotypicals,
of being outside the disability community. As was reinforced for me
last August during BlogHer11’s Immigration panel featuring Jose Antonio Vargas,
when we’re part of the dominant culture, we can’t claim we aren’t
privileged. We are. And it doesn’t matter that we didn’t ask for the
privilege — we have to make choices about what to do with that privilege. And self-advocates do not have to be nice to us about it, though I think many have demonstrated exceptional patience with me.

Personally, I am trying to listen, really listen, to self-advocates like Corina Becker, who wrote in What I Want People to Know:

want you to understand, that from my point of view, I did not suffer
from autism. That is, autism does not cause me pain. It creates
struggles and challenges, yes, that can be disabling, but the pain and
suffering that I went through happened because of two things: being
undiagnosed and not having the knowledge for supports and

I know I’ll fail a lot, probably
badly. I know some self-advocates will be really honest with me when I
fail. I know some self-advocates don’t care what I do, as they’re
working on strengthening their own community, into which parents and
caregivers do not factor.

I’ll keep trying to listen,
and trying to act accordingly, because I want the best life possible
for my son and his community-mates of all ages. As Ari Ne’eman said at the 2011 Syracuse University Neurodiversity Symposium in regards to the parent and self-advocate communities,

the end of the day, we want the same things. At the end of the day,
we’re hoping for the same better world. It’s just that we who actually
live this life, we who actually experience these challenges, are in a
position to tell the world that there is not just one way to accomplish

At the end of my day, I want a world that
treats my son with dignity and respect, takes him seriously, and gives
him the accommodations he needs — regardless of whether but especially
if he asks for them — without patronizing or infantilizing him. And if I of all people do
not treat my son’s possible future selves — today’s self-advocates —
the way I hope he will be treated, they way everyone deserves to be
treated, the way no one should ever have to ask to be treated, then how could I ever demand anyone treat my son better?


 A version of this essay was previously published at