By November of 2016 we had reached the point where Tony was no longer vomiting if people got too close to him, but it was still extremely challenging to get him into most public places. There are a number of reasons for that, many related to the differences in his sensory systems, but our little man also struggles a great deal with the unfamiliar. So his fabulous Hab/ABA team designed a program that would work like this: we’d pick ten stores randomly and just walk in with Tony and walk out. He got a highly prized food reward just for walking in, and the goal was to frequently rotate out the stores so that hopefully he’d come to tolerate novelty. Once he was doing well with walking in, we’d increase the time by two seconds.

Let’s just say Tony didn’t want to actually walk in on his own in the beginning. The first time, for example, that we tried to get Tony into a particular Title Boxing, he braced his feet on the door frame, then fled crawling and crying underneath my legs while I was trying to adjust my grip on him. A lady walking into the building commented that he didn’t seem to want to go in, I’m sure I agreed with her using as few words as possible, as I picked up our less then pleased son, walked in, walked out, and handed him his reinforcer.

We had gone through there a few times heading into January 2017, with everyone having been courteous about our brief visits. On our last January visit, the person manning the desk came up and asked me my name. I told him, briefly mentioning what we were doing with our little man’s therapy that day, and then I asked Tony if he could say “hi” using his device. Tony has problems with motor planning (that means he can’t always get his body to do what his brain wants), so sometimes it can take a little while for him to answer. The gentleman in question waited- actually waited- for my son to answer. If I weren’t a married woman, I would have fallen all over him with some serious hugging at that point.

So, I did the next best thing. After we got home, I wrote a note to their corporate headquarters praising the staff at that location for always being polite and cool with Tony’s therapy visits. Why did it matter so much to me that someone waited for him to finish speaking?

Tony’s had his speech device for going on three years now. Outside of a therapy clinic or school setting, this was the very first time someone in public actually waited for him to answer. The first time, and when it comes to businesses that aren’t therapy clinics, it’s also to this day one of the only times, although recently a clerk at Costco and one of our fabulous local Sprouts cashiers asked him and waited, and I was pretty over the moon about those occasions also.

As his mother, it is hard not to inhale sorrow as I watch people either not even try to wait for him to answer or give up on doing so and turn their back to start talking to other people. At this point, I can only guesstimate what it has done to Tony, but for starters he probably feels like it doesn’t matter to most people whether or not they talk to him or even what he has to say.

When I started talking about these experiences to friends at church, several people started making a concerted effort to stop and talk to Tony and wait for him to answer. And that also touched me deeply. However, as some of them have discovered, Tony’s answers are honest, but not always polite.

I read once on another mom’s blog that she likes to try and find the humor in situations relating to her kiddo’s unique circumstances. Sometimes, I struggle with that, but oftentimes Tony’s more pointed answers give me a chuckle. Once, when J.M. at church said “hi” to him, he ignored her, so I asked Tony if he could say “hi” back. He took a few seconds, and then hit the sequence of buttons on his device that produced this: “No. No. I want to play. Bye-Bye!” He then grabbed my hand and started pulling me away from her. She handled it graciously as I called out it was nothing personal.  He recently told K.H. at one of his therapy clinics the following:  “No. Let me tell you what I think. I’ve gotta go.  Bye-Bye!”

Sometimes people do get offended. When you’re chatting with an individual who has Autism, they may like you, they may love you even, but they can struggle with the social graces part, and depending on what is going on with them a single one time explanation certainly isn’t going to change that.

For Tony, we’ve been working on this for a while now (years), but a good chunk of the time he still has to be prompted to say “hi,” and anyone he’s talking to still needs to be prepared for him possibly saying something a little bit rude. The Costco clerk who recently said “hi” to Tony got totally ignored because his device was in the cart on the other side of the check out counter and he didn’t want to wave. The Sprouts cashier who wait patiently was informed: “I want to watch T.V. I want to eat a banana. Bye-bye!” She was really cool about it, I know she had previously heard me telling another customer some about Tony, and she’s been super kind to us both ever since.

My best guess is that Tony feels like if he says “hi,” that means we’re staying longer, which is rarely what he wants to do. Sometimes people see the need for a prompt with “hi” and think he doesn’t actually use this device for meaningful communication. When it comes to food, play items, movies, books, or activities he wants, Tony knows exactly what he’s asking for, to the point where he struggles to maintain his cool if you give him the wrong thing or tell him “no.”

From time to time though, I think it is safe to say he is so unenthusiastic about talking to someone, he’ll actually start playing with the different categories on his device. That can also cause some confusion for others about what he understands about communication. He also will usually ignore a request for him to answer something he’s not interested in. At this time, Tony really doesn’t see why he should comply with requests for communication about things he’s not personally interested in or wanting to do at that moment, even if you offer him treats to do so. But I still love it when people try to talk to Tony, and I am always grateful when they do. He needs all the practice, and sometimes the patience, from others he can get.

Some Thoughts On Communicating With Non-Verbal Individuals

I like the philosophy espoused by Tony’s NMT clinic about assuming competency. That being said, sometimes nonverbal individuals may not have all of the receptive communication skills typical for a child their age. I would, however, recommend treating them as if they do, because sometimes, especially for a kiddo with motor planning issues or apraxia, they understand much more then they can currently get their bodies to express. I also believe that people will rise or sink to the level of your expectations for them. However, if you need to know specifically what an individual does understand or can do and you are going to be providing care, I think asking the parents in neutral way how he/she communicates and what for is just fine.