When a child is diagnosed with autism, it reminds me of a ripple, touching each person close to the child in a unique way — those nearest to the center (the child) are impacted the most, and the parents are close behind.
It’s as if everything changes in an instance and yet everything feels the same.
You can go back to your life pre-diagnosis and in many ways your life does settle down into a routine resembling life pre-diagnosis, but it’s different — for some ever so slightly, and for others it can be quite different.
I admit for me it came with mixed emotions, none right or wrong. We were relieved when we got the “official” diagnosis — ASD, level 2 with global development delay — but that doesn’t meant we didn’t feel a plethora of emotions.
It feels as if moments in your life could be categorized into two classifications: pre-diagnosis and post-diagnosis. For me, it was not hard to think of the past, the time “before.” That was easy and required little effort. I could have looked back and nitpick our past, choosing to stay stuck, or I could figure out what the new “every day” would look like.
If your friend’s child receives a diagnosis of ASD, no matter the diagnosis level — level 1, minimal support; level 2, substantial support; level 3, extensive support — it is possible they will feel as if the doctors handed them a burlap sack of emotions.
“Whenever you feel like it, just reach in and pull out an emotion,” the doctor said. “It’s the adult version of grab bag. Fun, right? And here’s half a tree of pamphlets and brochures to help you figure out what to do next.”
My husband and I were fortunate, my mommy gut had been telling me for a while there was more than just “second child syndrome.” So when it came to us, we felt relieved and happy to have a diagnosis. Yes, I mean that, we felt happy — at least I was, and still am. A diagnosis can open doors that are otherwise hard to budge, especially when it comes to certain therapies such as ABA.
My husband lets me do most of the talking about autism, he knows I’m a communicator. That doesn’t mean my husband doesn’t put his two cents about our son J’s care, he just doesn’t need to talk about it like I do. We all deal with things differently and we respect each other enough to accept those differences.
He said to me on the day J was diagnosed, holding my hand and looking into my eyes, “Well, now we have the diagnosis to get him the help he needs, but you know he’s still our boy.”
That was all I needed from him to assure me it was all going to be OK, because the journey we were embarking on could be, and still is, overwhelming.
My love language is affirmation, and that was plenty to remind me we were in this together to find and provide the best therapies for our boy and our two other wonderful kids, if they need some extra help, too.
So what can you do when your friend’s child is diagnosed? How can you hold space for your friend, especially if you don’t know their primary love language? I mean, I think I can figure out my closest friends’ love languages but what about the mom in the grocery store or that old friend from high school that’s now a dad to a child on the autism spectrum?
I don’t have definite answers, as nothing is ever black or white, but I do have a few things for you to consider, especially if you don’t have anyone close to you who has a disability.
1. At the end of the day your friend’s child is just a child, a kid who might be obsessed with lining up trains by color or who will only eat chicken nuggets shaped like dinosaurs. No matter the diagnosis, remember that child has not changed from who they were before the diagnosis. They might not yet be aware they are different in some way. They might like the same things your kid does, so treat the child exactly as you did pre-diagnosis.
2. With that said, remember we all have “quirks” and we all could use a little more compassion. For example, if you don’t like it when your food touches or the sound of a loud chewer, try picturing those sensory issues magnified.
Imagine a cup, an average size teacup — this teacup represents the amount of stimuli your central nervous system can handle in a day. Now let’s start your day. You wake up and check your phone. Pour some tea in your sensory teacup for the light on your phone, and the videos and pictures on Facebook you watch and scroll through.
Next, you put down your phone and take a shower — pour some more tea for the water and the scent of your zesty tangerine and ginseng body soap.
You’re all clean and ready to tackle the day, so you step out, dry off and go to the closet. You find something to wear but the tag on the back is a bit scratchy — pour some tea.
You slip on socks that feel a bit tight around the ankle, your shoes are worn down, making your feet uncomfortable and you haven’t even left the house. Yup, pour some more tea. You go to the bathroom to fix your hair, brush your teeth, apply deodorant — pour, pour, pour. By now, your teacup is getting pretty full. So what do you do? You do nothing, really, because it’s second nature. You take your shirt half off and cut out the itchy tag, you make yourself some coffee and grab a bagel, check the weather and traffic, you put up with the socks and shoes but decide to go shopping for new shoes this weekend. You go about your day. You are able to lower the stimuli threshold without thinking about it.
For a child with a sensory processing disorder and/or autism, their teacup for stimuli is much smaller. Imagine those little teacup sets at the toy store for kids. Now think about how many times in just one morning you had to pour tea into your sensory cup. At this rate, the child’s cup is overflowing. Just those things alone can be too much stimuli on any given day.
This is just the example of one child, but I hope it paints a picture of what it’s like when our nervous system is wired differently. So how do they handle the overflow that you so easily thwarted? Their nervous system reacts differently, so they might resort to stimming (self-stimulation) by humming, rocking, jumping (all things our J does). They might go hide under a blanket or feel upset. The child could do other things to try to deal with their over-stimulated nervous system. The point is, their threshold might be much lower. So before you judge the women with the loud child humming in the store, or the kid who is running in circles at the playground with no regard of his surroundings, be kind. Smile and nod at the parents. If the child gets away from the parents or has a meltdown, ask how you can help. They might say nothing, feel embarrassed and leave, but it lets them know you aren’t judging their parenting. Believe me, if you think people judge you with a child without any delays of any kind, judgement seems to take on a whole other level with a child with a disability.
3. For any level of friendship, ask sincere questions. Ask what the diagnosis means. Don’t be afraid if you don’t know what they are talking about, chances are, since their child just received a diagnosis, they are also learning.
Ask, “How do you feel now that you have a diagnosis?” “What’s the therapy plan?” “What does autism mean for your kid?” Because you probably won’t meet two people who have autism (or not) with the same issues. And if you sense your friend is in an uneasy place about the diagnosis, tell them you are holding space for them and they can come to you to talk with no judgement (offer this only if you truly mean it) and you can help out in any way they need. Offer to pick up their groceries if their kid is having a bad day and they can’t leave the house. Take their dog to the vet for them. If the parents and the child feel comfortable enough with you, watch the kid for a few hours so the parents can have a date night.
So what about old Facebook friends, acquaintances? You don’t know them or their kid well but you want to offer support. You can ask the same questions and tell them they are amazing parents because they will need to hear it — often. This world might make them question many things, so any form of sincere encouragement will probably be appreciated.
And please don’t say the following, even if you have the best intentions.
“I’m sorry to hear that.”
“That’s too bad.”
“Do you think vaccines caused it?”
“Will they have to be institutionalized?”
Just be kind and open-minded. You don’t have to say anything or offer anything, you can offer support by liking a status or pictures of their wonderful child with autism. Just being seen and heard can be enough. Don’t disappear if you are remotely close. It’s OK to admit you don’t know what to say, but you still want to make it known you are here for them. They will appreciate the honesty because people will be feeding them “cures” for something that doesn’t need a cure but rather more understanding and awareness.
I, like other parents of kids on the autism spectrum, have to remember people don’t know what to say half the time because they don’t have any experience with autism. Or if they do, it might be very different from what your child is going through. I can’t be mad at someone for their questions if they have no idea what autism is, because it is hard to define.
We will do our best to provide everything J needs to thrive and become a decent human being, a well-rounded citizen in society pursuing his passions in life, but ultimately, only he will know what it means to be autistic. My husband and I are just the lucky ones who get to savor and celebrate all his victories, no matter how big or small. Like him saying the word, “delicious.” That’s a hard word for anyone to say, really, and here our J said it mimicking his older brother who had just said it about the chocolate chip cookies we made.
I’m no expert, if there is such a thing. These are merely suggestions, but I will say this strongly — don’t disappear. If you talk on a regular basis, keep that up. If you meet once a month for coffee, keep it going. Now is not the time to flea, your friend needs you. You might not think you have much to offer, but you do. I believe God put you in their life for a reason. You might not be able to see each other as much because of the child’s new therapy routine, but check in. Don’t evaporate. They need your friendship. They need you. Always.
We want to hear your story. Become a Mighty contributor here.
Thinkstock image by imtmphoto