Richard Dawkins ruffled more than my own feathers recently. The world's most famous atheist suggested that when it comes to birthing a child with Down Syndrome, there is no ethical dilemma. His advice was simple:
Immoral? I get that Dawkins is a Darwinist, but basing a person's worth solely on his contribution to society—well, that's where all manner of immoral behavior starts and finishes. What defines us as useful? Being able to hold a job, a conversation? And who is Dawkins to decide what is useful, anyway? As the saying goes (and the irony is wholly intentional in this case): who died and made you God?
When asked at what point would Dawkins draw the line—what about autism, say—he carefully retreated:
Not enhanced? Forgive me, I thought we were talking about human beings here, not cyborgs. Or maybe they are one and the same in Dawkins' world. On this last point, he is guilty of the all-too-common misconception that all Autistics are savants. I have news for him. Not all people on the spectrum are "enhanced," to use his phrasing.
What would he see done with those who remain non-verbal all their lives? And many of those autistics with the high-functioning label can't live alone or get a job. So what should be done with them? If such arguments sound familiar, you need only cast your mind back to Nazi Germany. The Sterilization Law aimed to 'improve' the human race through controlled breeding. Only "enhanced" specimens deserved to live...
For those of us who see intrinsic worth in human life, Dawkins' comments were painful to read. Ask the mother of a child with Down's syndrome or any other disability whether she'd do it all over again. Ask a father what he feels when his child smiles or laughs.
Raising a child with extra needs isn't an amble in the park, far from it. But does having a disabled child diminish the deep, incredible love we feel for them? Does that make their life any less worthwhile?
Human beings are more than the sum of their chromosomes, Richard Dawkins. If we open you up, does your heart still beat? Well, guess what, you should take look inside a person with Down Syndrome. You might be surprised by what you see.
As a rule, I don’t read anymore—books about autism, I mean. Initially, like any parent reeling at their child's diagnosis, I devoured everything I could get my hands on. But the books were either too academic or too preachy or, let's face it, too bleak. Then a recent title caught my eye: The Don't Freak Out Guide to Parenting Kids with Asperger's, by Sharon Fuentes and Neil McNerney.
Here was a book like none I’d picked up before—the textual equivalent of sitting down for a coffee with a mom-friend who just so happened to have been down the same road. A mom-friend who happened to be witty and wise without being trite or patronizing. (Because parents with special needs kids are burned out enough without being discouraged or lectured to in our ‘spare’ time.) And the fact that Fuentes draws on personal anecdotes from her son, Jay, lends her an air of credibility that many authors lack.
Did you know there are different 'types' of Aspies? Neither did I, and in fact, my son wears all of these personas at different times. So it’s useful to know as a parent what kind of approach is most effective whether he’s anxious or analytical, a downer or a rule stickler.
Fuentes' struggles—financial and emotional and otherwise—are instantly relatable to parents with kids on the spectrum. From the ‘mommy guilt’ and the judgment that many of us face almost daily, she (only half jokingly) toys with the idea of handing out this sign to strangers: “My son has autism. He is not intentionally being naughty or rude, but you are!” One mantra I will take away from The Guide is this: “Those that matter don’t mind, and those that mind don’t matter!”
Among the excellent tips in the book is the suggestion to create a 'one-pager'—a cheat sheet of information sheet for already bombarded teachers to help them get to know (and hopefully grow to love) your child. In an ideal world, educators and parents are working toward the same end goal (helping a child be his/her best), not at odds with one another.
With so much focus on the child with Asperger’s, it’s refreshing to devote attention and chapters to strengthening parental and sibling relationships. When it comes to love and marriage, Fuentes reminds us to pick our battles and our words with care. Moms in particular should bear in mind that there is no such thing as a mind reader. Ain't that the truth.
Siblings almost always get the short end of the straw when it comes to autism. My son is an only child, yet many Aspies are not. It’s crucial to nurture the sibling relationship to avoid lasting resentments.
The authors give the floor to adult Aspies who speak directly of their own experiences. The Guide may be short, but it's the kind of book I know I’ll go back to it again and again. Asperger’s is a difference, not a disease. By learning the best ways to relate to our children, we give them hope for the future. It’s not about changing their stripes, but about helping them adapt to the jungle—and or rather, helping the jungle adapt to them, just as they are.
And we're giving away a signed copy of The Don't Freak Out Guide to Parenting Kids with Asperger's! To enter, all you have to do is leave a comment below and tell me what freaks you out most about having a child with autism. You have until 22 August, 2014 to enter. You must be a YMC member and please be sure you've registered your email address in our commenting system so we can contact you if you win.
Yummy Rules and Regs: You must be a YummyMummyClub.ca member to win. Click to sign up! It's free and filled with perks. One comment per member. Entries accepted until August 22nd, 2014. Contest open to Canadian residents (excluding Quebec). Winners will be picked using www.random.org. See full contest rules.
If you liked this, you might also like "Don't Fix Me: I'm Different, Not Broken," or "Tips To Help Your Child Cope With Anger and Frustration."