On Respecting the Privacy of Disabled Children

This week, the parents of a preteen autistic boy took to Twitter to document his meltdown – without his consent, obviously. I will not link to the specific tweets because I don’t want to contribute to his violation. Suffice it to say, I think that there are some ways we should and shouldn’t talk about our children.

Dehumanizing Language is a No

Don’t describe your child in dehumanizing ways. Don’t talk about them being “soulless” or “inhuman”. Don’t tell the world you fear your child as you bully that child. Don’t use one of the most public avenues of social media possible to shine a spotlight on your child’s darkest moments, inviting the whole world to gawk in horror at them. Don’t talk of your child as being “gone” when they are right here.

Empathize

If your boss provoked you to tears, and then started filming you as you cried, how would you feel? If you were in the hospital and soiled yourself, would you want the nurses describing it in great detail on social media later?  How about right during? Would that make you get more upset, and maybe even act out a bit? If someone’s having a meltdown, what they need is quiet safety and understanding. Parents who film their children’s meltdowns are doing so to elicit sympathy and attention for themselves, not to make their child safer or calmer.

Don’t Share Those Videos

They aren’t some deep insight into autism and they aren’t showing you something “brave” that parents should be lauded for bringing our attention to. Those videos are abuse. The person holding the camera is abusing the child during filming. The person who uploads the video is abusing the child again. And everyone who watches and shares those videos is contributing more to that abuse, a third time. It is horrible enough that children are trapped with unsympathetic and abusive parents. Joining in with the parents to heap abuse on their children is wholly unneeded.

Remember the Golden Rule

If you wouldn’t want your boss or partner posting it about you, you probably shouldn’t post it about your kid. And honestly, ask them if they want something on the internet. “Can I share this story you wrote?” will more likely get a yes than “Can I share this humiliating video of you crying, scared and in pain?” If your child says no, or if you think they’d say no, err on the side of not being a terrible parent and don’t share it with the internet.

Have a Support Network

Often parents who engage in this kind of internet over-sharing will say their reason for doing so is that they need support and solidarity. It is your responsibility as a parent to seek out a support network to meet your needs in ways that don’t abuse your child. Period. Whether that means a mental health provider or respite care or hiring a babysitter and going out for a date or with friends or just to have quiet by yourself. Yes, there are lots of things that make that harder, but no, those things don’t excuse blaming your child’s condition for your mistreatment of your child.

Dear Jenny McCarthy

Much to the dismay of public health professionals across the nation, you’ve been given a new chance in the spotlight thanks to your new co-hosting gig on ABC’s The View. Congratulations! From MTV icon in the days when they still played some music to public menace, you’ve come a long way.

We all know you’re not a fan of vaccines; some days you blame them for your son’s autism and some days you claim you just want them “safer”, but you’ve contributed to a world where fewer children are vaccinated against preventable diseases. According to JennyMcCarthyBodyCount.com there have been 118,794 cases of vaccine preventable diseases in the United States since you started telling people vaccines were scary.

And how did you make vaccines seem so scary? Did you tell people vaccines would kill their children? No, you told them vaccines would break their children, that they would make their children defective rejects – like yours. I often get offended by the way you speak about autistic children, on behalf of my son and on behalf of my autistic friends. But the way you speak about your own son makes me weep.

Whether your son is autistic or has some other condition or is an “indigo baby” like you once claimed, dear Jenny, you speak of having him as if it were some cross you had to bear. Children listen – even non-verbal children – and they pick up on how their parents talk about them. Speak to and about him kindly now, while there is time to repair some of the damage.

Accept your son. Love him for who he is. Stop publicly flogging him for failing to meet your expectations. This may not be the child you asked for or the child you wanted, but this is the child you have and you owe it to him to love him with all your heart. You brought him into this world with the intention of parenting him. You owe it to him to see this through and to do it right. He does not owe you being a different child, the one you really wanted.

I had planned to write you an angry letter, about how your attempts to use autistic children as scare tactics makes the world a more hostile place for my son and the children and adults like him. But honestly, I just worry about your son. I worry that you having a fresh new microphone on The View will only give you more opportunities to let the world know you don’t think your son is good enough.

Please reconsider everything.

Sincerely,

Mother of an autistic son

Words of Caution

I’m a mom of an autistic boy. I don’t blog about him much, because his story is his to tell and mine is mine to tell. I sometimes blog about my family of origin. They are adults. They can largely defend themselves. They can refute what I say or disagree. They do not need my permission and supervision to use the internet. They do not rely on me for food or shelter. And, with the exception of my grandmother, I don’t use anyone’s real name.

When we blog about our children there are a few things we need to remember. First is that the internet is a forever kind of deal. Once you have published a photo or story of your child on the internet, it’s there. If you linked that story or picture with their name, that association exists and can be found someday by a prospective employer or romantic partner or landlord or enemy. It’s out there.

Some day your child(ren) may very well read your blog, especially if substantial portions of it are about them. The words you use about your children are words they might read. Bear that in mind.

Remember that childhood is transformative and none of us come out of our teen years or childhood years quite the same as we entered them. Try not to make dire predictions in your darkest moments. If you must, use a personal offline journal to get your feelings out and reflect on them before or instead of blogging.

When your child is exasperating you, take a moment to remember something amazing about them and post that story online. It will calm you down and help you focus on your child’s strengths and positive qualities, which in turn may help you communicate and problem solve with your child to address the cause of the exasperation.

How we talk about our children doesn’t only shape how the world views them; it shapes how our children see themselves. It’s important for them to overhear us bragging about them to our friends and peers. It lifts them up when we speak about their milestones and achievements, even when they may not seem like milestones to another child or another family. When our children know we think highly of them, they have more confidence to face challenges, resist peer temptation, and maintain healthy personal boundaries.

So blog about your children, but take care. Think about which words you want to commit to posterity and publish for the world, and which ones you will keep in a private journal of your own. Remember the power of search engines, and the potential long-term implications of what you say. Respect your children as individuals with their own side of each story to tell.

Adjusting Expectations

I’ve been doing a lot of research this past week on the (US) nation’s best-known autism organization Autism Speaks. Spoiler alert: They are not a charity, not an advocacy group, and donating to them is counterproductive to aiding quality of life for autistic people. I’ll be doing a video on them, their finances, and how much I hate them upcoming but for now I want to talk about a few other thoughts this research has stirred up in my head.

Within the “autism community” (a group at least as nebulous and diverse as the “atheist community” I frequently read about in blogs) there are two basic camps: find-a-cure and neurodiversity. Viking and I most definitely belong in the second camp. Here are our reasons:

1. Autism is not a disease like cancer or AIDS (despite what the Autism Speaks ads portray.) It is a difference in neurological processing, so finding a “cure” does not mean the same thing in this context.
2. As naturalist atheists, Viking & I both strongly believe that “who we are” is in our brains. If our son’s brain was different, if he was neurotypical, he would not be the same boy. I do not want to “cure” my son’s personality.
3. People with autism can lead full, engaging, satisfying lives with varied degrees of support services needed to accomplish this.
4. Autism has benefits. That’s right – benefits. My son has the best recall of anyone I know. He is gaining encyclopedic knowledge of dinosaurs, and every fact he learns, he retains. His intense focus and curiosity may serve him well in a variety of adult fields of study and interest.

A lot of parents take an autism diagnosis as bad news. Messages of fear are spread by the anti-vaccines crowd, who are so successful in scaring parents about autism, those same parents forget the risks of vaccine-preventable diseases like Polio and Rubella.

I think for a lot of parents the hardest part is giving up the dreams they had for their child. My dreams for my son have always been non-specific: I want him to find work he finds compelling in an environment he’s comfortable in, with enough income to pay his bills. Call it the Lower Class American Dream, but my main concerns have always been for his health and happiness, not for any specific career aspiration or personality archetype I wanted him to be.

I intentionally avoided those thoughts and projections when he was an infant, trying to find out who he really was and is, rather than mold him into my idea of the Ideal Son. Because I’ve always been more interested in finding out who he is and nurturing that, the diagnosis wasn’t a blow to me.

I had a reduced load of adjusting my expectations. Because my mother & I were both speech-delayed, because I was already expecting that to be a possibility, it was easier for me to bear the Mommy Snipe Wars at the playground, where women would compete on their toddler’s developmental progress (a game I chose not to participate in).

My son isn’t likely to be the captain of his high school football team (even if I would let him play, which I won’t) or voted Most Popular or elected Prom King, but his odds of winning a Nobel are significantly higher. And even with his social challenges, my son is incredibly charming and has wrapped every teacher he’s met around his teeny tiny fingers. I am not worried that he will be unhappy; I accept he may be made happier by different things, people, or surroundings than another child, but I know by his squeals and peals of laughter that he is joyously happy. Maybe if the find-a-cure parents got more support and help in accepting their child, they would not be so desperate to find something, anything, to blame for their child not turning out as their expectations had dictated.

I think more education is needed, on what life can be like for someone with autism, and their lifelong “prognosis” if you will. And this information needs to come from people who have Autism and Asperger’s diagnoses, not from parents. The parent experience is different; we need someone to talk to, especially when our children are very young and/or very dependent on us for basic needs, yes, absolutely. I am not implying that such parental support groups and advocacy groups aren’t helpful or needed. But when it comes to policy, when it comes to educational aids, when it comes to how we classify and treat people with autism, we need to listen to the people who experience it first-hand.

I’m still scripting my video on Autism Speaks (an organization without a single autistic person on their Board) but I hope to have it up on YouTube in the next week, and when I do, I’ll post it here as well.