Autism Parents, Self-Advocates, and Shared Concerns

Shannon Des Roches Rosa

Let me tell you something that may or may not surprise you: When it comes to public discussions about autism, parent and professional voices tend to dominate, and autistic voices tend to be excluded. While that dynamic is changing, primarily due to autistic advocates’ refusal to be sidelined in stories about their own community, and in part through the many communities that encourage parents to discover, listen to, and respect the experiences of those who have lived autistic lives — autistic voices too often still get dismissed, ignored, or outright disrespected.

I’m not begrudging parents of autistic kids the right to tell their own stories from parent perspectives, obviously, being that I’m one of those parents myself. But I do find it unsettling when parent stories mention autistic perspectives only to belittle or reject them, as Anne Spence did recently in her otherwise thoughtful story When He’s Older and Doesn’t Have Autism Anymore:

“There are people in the autism community
who make parents of autistic kids feel ashamed and guilty for wishing
their child didn’t have autism. Autistic self-advocates who scream
“That means you hate us as people!” and “You hate autism? Then you hate
your kid!”

“Well, I’m calling BS.”

Believe, me, I consider it totally reasonable to have feelings about parenting a child with
disabilities (and that child’s siblings) in a society that treats those kids as special angels or pariahs, and rarely as human beings with feelings and rights. It’s totally reasonable to be pissed as hell about the difficulties our kids face every day because that society considers their needs and rights afterthoughts or annoyances — if those needs and rights are considered at all.

But it’s not acceptable to revile autistic self-advocates
as a group, given that they more than anyone else understand what it feels like when
society dismisses and mistreats someone because of their autism. Nor is it acceptable to ignore thoughtful perspectives on why saying “I hate autism” is hurtful to autistic people. It is especially not acceptable given that autistic writers so often share their life stories in the hope that today’s children will have a chance at being better understood and accepted, and be able to live comparatively happier lives. 

Nor is it fair to characterize autistic self-advocates as being in denial about autism and disability. Consider this message from the autistic author of the blog Real Social Skills, from the post You don’t have to like being disabled:

“Acceptance creates abilities. Acceptance makes it easier to be happy and
to make good decisions. But acceptance does not solve everything, and
it does not come with an obligation to love absolutely every aspect of
being disabled.”

It’s also unfair to frame self-advocates as the enemies of parents, given that the autism parent community includes autistic parents of autistic kids. Parents like Becca Lamont Jiggens, who had this reaction to Spence’s article:

as a community, are we still surprised that autistic people take
language literally and are supremely sensitive to perceiving criticism?

“As a parent, I fully understand this piece.

“As an autistic adult, I fully see the offensive spin in it.

emotional reactions of a 9 year old boy do not occur in isolation, and
are well informed by the ableist construction of society and social
expectations. It is only by comparison to what is deemed ‘normal’ that
any value judgement can take place to elicit an emotional reaction.
Significantly, too, the emotional reactions of a nine year old will
necessarily have a major impact on the emotional and psychological
development of their younger sibling which isn’t considered at all in
the piece.

would suggest an aggressive attack against a young boy for expressing
an emotional reaction. However, if that emotional reaction would hurt
someone else, a parent’s job is to help the child stop having or
displaying the hurtful emotional reaction.

analogy: If a child was happy because of a sibling’s failure, any
parent would act to teach the child that being happy about their
sibling’s failure is hurtful to their sibling, and therefore not an
acceptable emotional reaction to have or display. As parents, we take
action when our children have inappropriate, hurtful or otherwise
inappropriate emotional reactions because providing that kind of moral
and social education to our children is our job as parents!

hear the call of fellow self-advocates to NT parents to be ‘Change the
world not your child.’ So there’s something that I don’t think NT
parents grasp in the way it is intended about adult self-advocates
calling on parents to create that change in the world, and be an active
part of making the world a better and easier place for autistic people
to live in.

the current UN women’s rights campaign He for She, perhaps now is a
good time to re-frame the interaction between self-advocates and

“Something like You for Me?

people alone cannot create a world where autistic people and
non-autistic people can live well together, we NEED the help and support
of non-autistic people to create the world in which autistic children
and non-autistic children can grow up with an equal expectation that
their needs will be met and that an equal expectation that they can live
their life on their terms.

And then there’s the Wheaton’s Law aspect, as per autistic self-advocate Patricia George Zwicker:

are self advocates because no one else was there for us, does no one
get that?!?! Do you know what we have to go through to even get the
ability to rise up and advocate for ourselves. Parents have the
community of parents. What do people like me have? 45 yr old, dx in my
40’s, no kids, no resources, only my ability to use my “voice” to try
and not have another person end up like me. Adult autistic burnout kills
us. Mine manifested as a 50 minute seizure, needed to be placed in a
coma. So I fought damn hard to even be here typing this. Taking a go at
my advocacy is paving that road for autistic children as they become

to know why I self advocate? What drives me? I self advocate because if
I didn’t I’d be dead. Period. No one fought FOR me, they fought me,
still do. And no way do I want another Spectrum person to go through
what I did. I care that much. I certainly care far more than I ever get
back. That’s the life of a self advocate with no support.

“If you can’t make it better, at least don’t make it worse. Thanks for your time.”

Spence’s article appeared in The Mighty, a site about special needs founded by parents with good intentions. It’s a site that does incorporate the perspectives of people with disabilities rather than just those of parents of people with disabilities, as in Courtney Barnum’s post on Functioning Labels. My hope for The Mighty is that, in the process of learning how to turn good intentions into good resources, its staff also learns that it can only hurt a community to pit its members against each other.