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.