Standing Up and Speaking Out For My Child With Autism

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Before I was Leo's mom, I would have been likely to choose defenestration over confrontation. But kids like my son, who has intense autism, require advocacy, and advocacy requires standing up and speaking out on matters that conflict with his best interests. We parents and caregivers who want real change, real results, and real information for our children with special needs have to be smarter and stronger than perhaps we ever imagined. Here are four approaches to the advocacy our kids deserve.

1) Get Informed.

Parents of children with special needs gather information about our kids' diagnoses obsessively. But how do we know if our information is legitimate? How do we know which sources to believe? I suggest modeling information procurement techniques on those of investigative journalist Amy Wallace, who gave the following advice after researching the anti-vaccine movement:

"Challenge your own assumptions and be open to all points of view. Talk to lots of people and be willing to ask dumb questions. Then, take care to get every detail -- big or small -- right in print. And when I say right, I mean it in both the micro and macro sense. Context is everything."

Thoughtful information-gathering is trickier than it might seem, especially if one relies on the unfiltered Internet. The autism spectrum disorders community is particularly overpopulated with "experts" spinning misinformation into reasonable-sounding claims, as they did with the recent National Vaccine Injury Compensation Program (VICP) award to the family of Hannah Poling. Because Hannah's family's initial suit was filed as an autism claim, the antivaccination sector of the Internet interpreted last week's award as evidence of a vaccine-autism link. Sharyl Attkisson's headline at CBSnews.com even read, "Family to Receive $1.5M+ in First-Ever Vaccine-Autism Court Award."

That headline is inaccurate (euphemism). Lucas Laurson at Nature.com actually read the Poling VICP proceedings instead of gleaning them for keywords, and determined:

"However, the payment does not acknowledge a vaccine-autism link. The payment was made for a mitochondrial disorder and encephalopathy which fall under a category of so-called “Table” injuries for which parents do not need to show proof that the vaccine aggravated the condition as long as it appeared within a certain amount of time after vaccination. The VICP, which was established in 1988 (US Court of Federal Claims), has made thousands of such payments since its establishment."

It's important to dig beyond the headlines and keywords if we are to differentiate the valid information from the skewed. It's also helpful to find a community whose information-gathering skills we respect and trust, who will bounce ideas and share information sources, and who will discuss contentious matters without resentment. And we need to avoid flocks of parrots who all squawk the same squawk -- that situation is called an echo chamber, and once the squawking gets loud enough, it could permanently damage our hearing.

2) Speak Out.

It takes chutzpah to speak out, even if our hearts are fully invested in a cause. But we need to call out those who are wrong, offensive, misinformed, or ignorant about our special needs children -- especially when our kids can't speak for themselves. It is through such advocacy that the casual pejorative "retard" has become distasteful (though apparently no one told Jennifer Aniston), and I suspect the still-widely-used "lame" will follow.

We need to speak out for our children -- loudly, and more cleverly than those with whom we disagree. Especially in prominent arenas. As Catherine Connors wrote on speaking out against hate, we can't "let those be the voices that define this kind of story in the media."

Which is why I admire Penn and Teller's (NSFW) Bullshit! episode on autism and vaccinations. Their thirty-minute exposé -- shocker to no one, trigger to many -- included a lot of profanity, as well as some satirical nudity. But along the way P&T used well-researched evidence to deconstruct autism myths, trotted out effective visuals to illustrate the critical role of vaccinations, and allowed misinformed antivaccination activists to self-impugn. It is a masterful piece of advocacy.

Note: I'm not giving you a free pass to attack anyone with whom you disagree. Speaking out requires skilled judgment, especially if your goal is to showcase solid information. That means you don't get to go on a smackdown spree because you believe your cause justifies any means necessary. You also need to train yourself to think past trigger keywords and phrases, otherwise you'll be no better than a dog who, upon being told, "We're not going to the park today," only hears and reacts to "Park!" -- if you establish yourself as a superficial thinker, no one will take you seriously. And you need to know when to disengage. As Ta-Nehisi Coates advises: "Please don't ruin an important conversation with your need to have the last word."

3) Focus on the Big Picture.

Autism Speaks is a controversial organization. They have angered and alienated many members of the autism community. But they are also powerful, entrenched, and well-funded. So, instead of waging war against Autism Speaks, "free range Aspergian" and Look Me in the Eye author John Elder Robison decided to join their board so he could effect change from within:

"There may not seem to be much common ground between the extremes of neurodiversity and those who seek a cure, but I’ll find what there is and try to build more. I hope everyone can see the potential if we can all rally together in pursuit of a common goal."

We've already seen results: Autism Speaks now funds one of my favorite autism community endeavors: Alex Plank's WrongPlanet.net YouTube channel. I can't wait to see what else Mr. Robison helps bring about.

Another admirable example of big-picture-focus is Holly Robinson Peete. Her publicly stated beliefs about the cause of her son's autism are not all that different from those held by Jenny McCarthy -- and as far as I know, Holly's position has not changed. But for the past year Holly has beenworking hard on efforts that serve the larger as well as many overlooked segments of the autism community, through her HollyRod foundation, her children's book My Brother Charlie, and other projects. She is opening doors that other advocates may not have even realized were closed. She is staying true to herself, while fighting hard for her community.

So what stance do we take on issues like Jenny McCarthy's recent San Francisco Comedy fundraiser? I was tempted to speak out against the event, because I don't agree with Ms. McCarthy on most autism issues, and find her both abrasive and inconsistent -- plus the event raised funds for her mercury-causes-autism foundation Generation Rescue. But the benefit also supported The Ryder Foundation, which though a Generation Rescue affiliate funds a number of broadly supportive autism organizations. If The Ryder Foundation can harness the power of Jenny to provide real help for our kids, is that an acceptable trade-off?

4) Know When to Choose Compassion.

Pia Prenevost is the mother of a child with special needs. She recently wrote a soul-baring post called "An Open Letter to Special Needs Professionals," in which she pleaded:

"Some of “us” parents ... the ‘special’ ones ... can be a pain in the ass. I know that. We know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

Most commenters were thankful and supportive, but Pia also received this jarring response from a special needs education professional:

"Regardless of how difficult your world is as a parent of a child with special needs, that gives you NO right to treat teachers unkindly, which MANY parents do. When you ask us to be considerate of your feelings and excuse your rude behaviors, please ask yourself this.....is it ok for me to be rude to your kids??"

Cue comment storm and outrage on Pia's behalf! But Pia herself? She chose compassion, writing:

"Compassion is not only for the good people. The likable people. The easy people. Compassion is also for… and possibly most needed by… the angry people. The difficult people. The ones who are not nice, or amiable, or positive. Compassion is needed by the people who don’t ask for it, may not appreciate it, and may not return kindness with kindness."

Pia's response is a good reminder for situations of interpersonal disagreement rather than mis- or false information, though a body might need to take a wee break from the charged atmosphere in which the disagreement or miscommunication took place, first. And it may take some practice, this compassion-choosing. It's certainly not the easiest approach to advocacy.

We expect day-to-day practical challenges in supporting our children and their special needs, this advocacy -- this is extra. And it can be stressful. But we need to put real thought into how we advocate on behalf of our children and community members -- especially when they are disrespected through ignorance, intention, or callous disregard.

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Shannon Des Roches Rosa has a fierce temper and a flaming sword of righteousness. She wields both with more finesse than she used to, on her personal blog Squidalicious.com and via co-editing The Thinking Person's Guide to Autism.

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