I have to take a three hour class every year to continue to be Casey and Rob’s guardian. (Don’t panic if you don’t do this – I have discovered that even different counties in Ohio do things differently!) Yesterday, I sat through one about dementia. Honestly, I was interested in the topic as I have had some family members who had varying types. Sadly, I was bored out of my mind – they could have been talking about a person with autism.
Many different types – varying degrees of severity – medications might or might not help – how to advocate for the person…. isn’t that our lives? But – one thing that did stick out was one of the speakers was describing how not to talk to a person with dementia – as if they were a child, in a high-pitched, sing-song voice. (Even though that’s exactly how she seemed to be talking… but maybe I was just over the boredom and wanted to be done! 🙂 )
I can think of so many people that have no idea how to talk to Casey and Rob. Some, in particular, like to yell in their faces, because, you know – Casey and Rob are deaf. 🙁 I have repeatedly asked these people NOT to yell in their faces, but it goes in one ear and out the other. And those people wonder why my kids ignore them? Thankfully, they are rarely around those people. But still – how many people talk louder to someone who appears to not be paying any attention?
We have all done it. Maybe to get the person’s attention – maybe from our own frustration. Who knows? What I do know is if I talk loudly to either of my kids, they will shut down. Rob will get anxious because he thinks I’m mad. Casey will just make ignoring me a higher priority. So – always remember to use a calm, quiet voice. Trust me – they hear you whether they are acknowledging you or not. Yelling will cause a shutdown or worse.
Always speak slowly and clearly. Rob, especially, hears way too much. If there is a lot of background noise, it may take him a few seconds to understand what you said. Don’t talk with food in your mouth – don’t rush through what you want to say.
But don’t use too many words, either. Short and sweet. If you are giving directions, don’t list too many at once. I’ve spent many hours saying “Fold the blue shirt.” “Fold the black pants.” “Wash your face.” “Wash your arms.” and so on and on. Casey and Rob can follow 4 – 5 directions now, if they are familiar. If it is something new, be ready to break it down into one steps directions and be clear and concise about what you expect. It takes a while to build up to several directions at once. If we are having a rough day, we stick to one at a time. Every day is different so don’t be discouraged if you lose ground some days.
Never, ever talk to an adult with autism as if they were a child. I don’t care if you are talking about Elmo, The Wizard of Oz or Thomas the Tank Engine. Talk to the person just as you would any other adult. Casey and Rob hate to be “talked down to.” Casey will say they are “dults” not babies. Rob will just look at you as if you have lost your mind. I know it’s hard to do when you might be having a conversation about Bert and Ernie or Barney, but to the adult with autism, those characters are friends, not babyish. (By the way – I have perfected talking in “Elmo” and “Cookie Monster” voices. 🙂 🙂 My life is now complete!)
Explain what you are doing, even if you don’t think the adult with autism will understand. My kids know more than they will ever let on. I see bits and pieces come out and I’m always amazed. Rob loves to look up things on his iPad. He studies how things work on YouTube. He googles “squeaky brakes” or “broken fan” to see how to fix them. When we are baking cookies or cupcakes, I talk to them about each step we are doing. “The sugar makes the cookies sweet.” “The oven has to get hot first.” Many times, I don’t think they are really focused on what I’m saying, but then the next time we make cookies, one or the other will repeat something I said before.
Don’t use a high-pitched, fake happy voice. For one thing, the high pitch may be painful to the adult with autism who has sensitive ears. For another, even if the person functions at a child’s level, they know they are adults. You are insulting them by talking in a baby voice. Just stop it. Imagine how you would feel if someone talked to you like that. I would want to slap them, wouldn’t you?
Always, always give the adult with autism time to process what you said. This is really hard to do, as we are so used to the give and take of a “normal” conversation. I heard this tip when Rob was small and it really helped him. When I ask him a question, I count to 30 slowly before I repeat the question. Casey tends to answer quickly most of the time (if it is something she wants to answer… if not… she will ignore you forever!) Rob does much better when he is given the time to process your request and decide how to answer. Thirty seconds can seem like forever while you are waiting, but it does help. Don’t keep repeating the question – he will shut down.
On that note, try not to ask questions. Use statements instead. “Tell me what you want” is easier to answer than “What do you want?” Casey has an easier time with questions, but “why” and “how” questions are extremely difficult for both of them.
Many of these ideas will work if you have children with autism, too. Sometimes, with a child, you need to use a silly voice to get them to want to interact with you. Don’t be afraid to be silly with kids or adults! Any kind of interaction is so awesome! You may not be comfortable being silly, but try anyway. Life is too short to be serious all of the time. If I can say “Me want cookies” and “Elmo loves you” or “he he he that tickles” in character, then you can use a silly voice, too. 🙂