What do you say to a parent of a child with autism?

Several weeks ago, I was overwhelmed by the amount of positive feedback for my post on seeing autism as purple. In that short piece, I described what autism is like for Henry and, in the simplest terms, explained why autism looks so different for every child. Because that seemed so helpful for many, I thought it might also be beneficial for folks to know what parents of autistic kids need.

Let me begin by sharing these words from Melanie Fowler. Melanie has a Master's degree in special education, specializing in deaf education. She is also a certified educational diagnostician and has worked as an inclusion specialist for children on the autism spectrum who have been mainstreamed into typical classrooms. Most importantly, she is a mom. These words are from pages 15-16 in her book, Look at My Eyes:

"They [other parents] may think your child is 'misbehaving' and consequently deem you a parent unable to 'control' him. [...] 
     On the other hand, if your child behaves more like his 'typical' same-aged peers when he is in public, you might find that others are quick to brush aside your concerns or your situation altogether. Even after he was formally diagnosed, sometimes I would discuss one of William's behaviors with a mother of 'typical' children, and she would rush to assure me that, 'Oh, my son/daughter does the exact same thing; that's normal.'
     This reaction is sometimes the most difficult to deal with. After all, I realize these mothers are trying to comfort or soothe me by convincing me that my child is normal, but the fact remains that William is not typical, as much as I might wish otherwise. If he is exhibiting normal behaviors, he's doing so as a result of hours or days of intensive work and therapy. Also, I don't want pity or a handout from these women -- I am not seeking reassurance that my child is normal. It would be so much better if they responded with empathy and understanding rather than attempts to invalidate what I know to be true."

And these words are from parent Emily Willingham, documented in The Thinking Person's Guide to Autism:

"From casual acquaintances, such as parents of other children and periodically from others closer to me: 'I don't like labels.' 'He seems like a pretty normal kid to me.'

These responses set my teeth on edge. They speak to so many things: Diminishing my son's struggles. An accusation that we're magnifying his struggles, or worse, have sought and gotten the 'diagnosis du jour' of autism for a child who's merely quirky. An implication that if we just left him alone without labels, he'd be just fine.

Of course, I have to forgive these responses. Sometimes, they're just well meaning, an effort to say, 'Well, even with that difference, he's just a kid like other kids.' Sometimes, it's exactly the implied criticism I think it is. But I must forgive. They know not of what they speak. How could they?" 

There's not a mom I know who, when pregnant, says, "Gee, I really hope my child is autistic." We do not seek this. We do not high-five the professionals who confirm our suspicions. If you think we love these labels, please think again. On the other hand, and I can only speak for myself here, I do not hate the label. We have to accept what and who Henry is, because otherwise we cannot help him achieve his God-given potential and purpose on this earth. Henry has autism like I have terrible eyesight. It's kind of a nuisance sometimes, but my family doesn't love me less because of it. I didn't fail in school or in relationships because of it. Actually, I did pretty darn well. The nuisances can be overcome. With the assistance of a lot of folks, Henry will learn the skills he needs to adapt in a non-autistic world.

So, that still leaves the question of what you should say. I've given this real thought. Several months ago, I honestly don't think I would have known what to say either. Here are some suggestions:

You're a great mom for him. Keep it up.
I'm happy to know Henry.
Henry seems really happy and _____ (fill in an appropriate, positive adjective).
I'm here if you need me.
Are you and Keith ok?
Can I cook you a meal sometime?
What can I do to help?
I love you guys.

But, most of all, please know that I will forgive you if you hurt me. It might take some time, I'll admit, but I will forgive. I will extend grace to you, and I hope you will extend that same grace to my son when he is acting in a way that seems odd to you. I truly believe most of us live life the best way we know how at any given moment. So, if your words sting me, I will work through the pain on my own, and I will ultimately forgive. As Emily Willingham says, you know not of what you speak. How could you? I don't expect you to know, and I am glad you don't have to know. We'll work through this together, and if you have questions, just ask.