"And you love him?"

File this under Stupid Things People Say

Yesterday my wife hosted a playdate with a couple of neighborhood kids and their nanny. It wasn't all fun and games: my wife felt the nanny's eyes on her as she changed C's diaper (yes, he still wears diapers), and when she was comforting him when he bit his lip (sometimes small things really set him off, while bigger things do not). 

The nanny also asked probing questions: does C ever play with other children? (Well, yes, his brother.) Does he speak much? (When he's comfortable, you can't stop him from talking!) Did we do genetic testing when we were pregnant? (Uh…)

But the best was this little gem: "And you love him? You really love him?"

My wife, nearly dumbstruck, answered simply, "Yes, I love him."

To which the nanny, reflective, replied, "I don't know if I could. I think I would just cry all the time."

Sigh.

This is the same nanny who often remarks how sweet C's twin brother is. It's true: M is happy, polite, and enthusiastic. He's genuinely appreciative of the littlest things. Maybe this is what happens when you love a brother whose magnificence seems small to others.

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It's Not a Phase

Google "autism denial" and you'll see there are a lot of parents of ASD kids being told by well-meaning if ill-informed friends and family that their children are just "going through a phase." To those people I'd just like to say, autism is not a phase. Sure, it's possible with help and time the ASD child may improve. Or they may get worse. I guess in that sense autism has its phases.

But autism is a lifelong condition, not a fleeting trait. It is how the brain is wired, and it informs the very nature of the autistic individual.

It's not just being shy or awkward or unique. Autism doesn't just refer to children incapable of communication. And it doesn't mean the ASD child can't be bright or happy or even funny, nor does it mean they will be a Rainman-like savant.

In fact, it is often said there are as many forms of autism as there are people with autism. I suppose this is true, but across the spectrum there are common, detectable traits that define the condition, regardless of any individual's unique personality.

I think it's worth noting that friends and family who suggest "it's not autism" mostly do so from a place of love; they have good intentions. They don't want to believe it to be true. What they may not realize is that by denying the diagnosis, they are undermining the very people they love.

Imagine if you had cancer, but everyone you loved told you it was probably something else...indigestion or stress or poor sleep habits. How would that make you feel? It would be downright maddening.

No one wants to accept the autism diagnosis, least of all the parents whose child has been so diagnosed. But once that truth has been accepted by the parents, friends and family would do best to get on board, or keep their opinions to themselves.

Should I Talk to Your Son?

It's a question I've been asked by adults a few times, so I assume it's on the minds of many more. It's a question I genuinely appreciate, since it means the person asking it wants to interact with C. So, here's my answer:

Yes, please talk to C. Please ask him questions. Please engage him in play. Yes, please treat him as you would any other child.

Be prepared: he may walk away from you while you're mid-sentence; he may not seem to notice you or be interested in you; he might even seem distant or aloof.

But know this: he's not rude. He's not trying to be hurtful. In fact, he actually does want to be able to engage with others. I know, I've seen how he lights up when it happens.

Yes, there is a little boy inside C. Please, by all means, feel free to talk with him.

On Friends Old and New

One of the more surprising aspects of being the parent of a child with special needs is the reaction — or lack thereof — of close friends: people I believed would be there for us have faded into the background. At the same time, other people — some new and some old — have come forward in remarkable and wondrous ways.

I try not to judge why some long-time friends aren't there now. Perhaps they feel awkward or uncomfortable; perhaps they feel we might need too much; perhaps they're unaware of how much a little help might mean; or perhaps they're just too busy with their own lives and don't think they can take on someone else's problems — each of which is a valid feeling.

Whatever the case, it can be hard to let go of the sting when you realize those old friends are gone, but I take great solace in the fact that some friendships have grown stronger, and some new ones have blossomed to fill any gaps. Many of these new friends get it; they're facing similar challenges. There is no need for awkwardness, since we're in the same boat.

But I would say this to those friends who have faded away: don't. We need you now more than ever. You're a crucial connection to a time before these problems. We want to laugh like we used to and, in return, we'll try our best not to burden you with our woes.